# The Worried Mum's/Dad's/Carer's Club!



## DustyKat

I thought I would start this thread as a place where you can put down your worries and fears about your kids. It doesn't have to be IBD related, it can be about any issues you are having with kids no matter how small. 

I think at times we stew over things but don't feel they warrant a thread of their own. Also you may have problems with your non IBD children and just need a friendly ear.

Okay, so I will start this off.............

Roo emailed me this morning and said when she was out at a concert last night she had really intense pain in her side. When I questioned her about it she said she hadn't had this sort of pain since she was 14! :eek2:. It is nowhere near as bad this morning and she has no other symptoms, if it persists she will go and have it checked out. 

I'm worried!!!

Dusty.


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## Guest

try not to worry... the fact that it's subsided, and there's no other symptoms, are good signs... she possibly pulled a muscle singing/dancing at the concert, or even sent one into spasm, which can be really painful. or it could be mid-cycle pain, if the pain was more towards the tummy on one side, just inside of the hip bone.

she sounds a sensible girl, and i'm sure she will see the doc if it persists, but i bet it just calms down on its own.


good thread idea, by the way.


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## Crohn's Mom

Dusty, try not to worry too much 
Easier said than done right ?!?
I can't even imagine how I am going to feel when Gab leaves for school and I can't "see" her for myself. It's bad enough when she's standing in front of me and says, mom my "alien baby" hurts and I try to keep that straight face and just simply ask, "what do you need?"
It's nice to know that Roo still lets you know when she's feeling things that aren't quite right tho! 
I'm quite sure you live on pins and needles wondering ...what next 
Argghh...this damn disease !


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## Crohn's Mom

btw...for the record....Gab calls her "mass" her alien baby LOL....

I told her we will have a funeral for the little alien after her surgery 

Keep laughing ! It's healthy for the soul !


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## DustyKat

Thanks ding and Tracey......:hug::hug::hug:

I think it helps just putting out there, I know you guys know what I mean. 

I have been thinking, shock/horror!, and I wonder if it does settle if it could have been a partial obstruction?? She would have to have some sort of narrowing at the anastomosis. Anyway, thinking happy, non Doomsday thoughts. :ylol:

Ahahaha, love the alien baby! Do we get to give it a name?

Thanks, 
Dusty


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## Crohn's Mom

Did they remove Roo's appendix during her surgery? (I'm sorry, I did read ALL your previous threads...but just can't remember that for some reason) I am assuming they did...but, was just thinking that if they didn't maybe it's just an inflammation there ? 
I have chronic appendicitis for 9 years now and they have yet to remove it....it's an awful pain now and then. (esp the last 3 days! ouchy) I think it's about to calm soon tho...I can feel it 

And, Gab couldn't think of a proper name so she just refers to it as "alien baby".  Every single time she says it I can't help but smile a little hehe.


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## DustyKat

You know Tracey, Dex once said something to me....................

*"The worst thing that happened in my life didn't happen to me".*

I reckon we can all relate to that and it sums it up nicely. Yeah, we will keep on laughing and cherishing the good times! 

Dusty.


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## DustyKat

Oops...........too slow! :lol:

Yeah, they did remove it. They actually thought they going in for a simple appendectomy and look around, hmmmmm didn't quite work out that way! 

Good on Gabs, what a wonderful attitude! It will get her a long way in life. 

Dusty.


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## Dexky

God knows I'm a member of this club!!


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## Astra

Hiya Dusty

Roo will be ok, she is so sensible and knows the score.
And the fact that her symptoms have died down indicates that she'll be ok.

I'm a lot worried and concerned about Jessica (19) she's away in Leeds at Uni.
But she's ill, and I can't tell you what with at the mo, I'm too upset, I've confided in Pen tho. I feel so hopeless, cos she's so far away. All I can do is reassure her over the phone that she'll be fine, but I know she won't.
We're getting thro this, our GP has been fantastic. He gave her a few scripts to take back with her should she flare up again. 
And no, it's not an IBD


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## AndiGirl

I feel for you parents with sick kids.  We are in limbo with Alex.  I sincerely hope that he does not have an IBD.  If he does, I know it won't be the end of the world.  I'll be frequenting the parent section more.  It's easier to be the one with the disease than to see your child suffering.


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## DustyKat

Hey Joan,

Thanks hun. I have been thinking about her pain a lot, back, hip, thigh and right abdominal and the fact that it came on suddenly and severely with no signs of CD flare preceding it. I am strongly leaning toward her having a kidney stone. I know with her ileum involvement and SBS she will be very prone to stone formation. It is early Monday morning here and I haven't heard anything from her since last night so I am assuming she has had a good night. Fingers crossed! 

Sending loads of squishy (((HUGS))) to you and Jess and I hope things settle soon hun. :hug::hug::hug:

Hey Andi,

I too hope that Alex doesn't have IBD, I don't want to have to see you hanging around in this forum but it is lovely to see you none the less! :hug:

Dusty.


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## AZMOM

I'm IN.  Count me in!!!

You know Tracey, Dex once said something to me....................

"The worst thing that happened in my life didn't happen to me".

Not sure how to make that look like a quote, Dusty, but I don't know that Dex has ever uttered wiser words.   

My day today?  Telling Claire she had to make her "coconuts" in the hat from the doctor so I could take a sample to the lab.  Some of you may call that stool, BM, doo-doo, poop, etc.  but at our house, periodically Claire changes the words for things that bother her.  So, sports fans, today it is "coconuts".  We took the coconuts to the lab, had her blood drawn, listened to her tell the phlebotomist to "do it right the first time because I don't want you to dig around".  I LOVE that she is so mature but HATE that she is so mature at 7.  It broke my heart today for some reason.  

The 11 year old's newfound wheezing was terrible this weekend.  We spent a lot of time outdoors because the weather was so nice.  He got panicked and was looking for the inhaler.  Then he went in and sat while his friends were outside tearing around.  I could have just cried.

Now is any of this life threatening?  Heck no.  Am I blessed?  Heck yes.  But do I worry?  Well.....you know the answer to that.....every day!

I love all of you all and am thankful that you are here.  Thanks for listening.

J.


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## Zoodles

Another club member.  We're in a good spot right now but I have to do the renewal for Humira through insurance company.   Dreading the process

Thanks for the new thread.  We refer to crohn's as the little brother.


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## DustyKat

Hi Julie,

Godammit J, Claire is such a little trooper! Even through all the crap she must make your heart sing, . 

I think watching what your kids *can't* do, the simple things like running in the yard, is one of the most heartbreaking things a parent experiences. I hope your boy's meds kick in real soon and he can soon be out there tearing around with this mates. 


Hey Zoodles!

Welcome to the club, :biggrin:

So great to hear that all is going well, YAY!!! Hoping all goes smoothly with the renewal, I will be keeping my fingers and toes crossed...........

:goodluck:     hun!

Dusty. :hug:


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## DustyKat

Well Roo woke up with pain yesterday, about a 5/6, and it didn't abate all day, so she took herself off to emergency yesterday evening. This is the first time she has been unwell like this since moving to Sydney and being 600kms away was really doing my head in. Talk about being torn, wanting to jump on a plane and be there with her but then I have Matt at home, doing okay but far from out of the woods and needing flushes and dressings done twice a day, @#%*!!!

Of course Roo handled everything just fine and she was kept in the ER until early this morning. Her inflammatory markers are normal, she has no kidney stones (ultrasound), no palpable abdominal masses, no urinary infection and still no other Crohns symptoms. Strangely enough I am clinging to the fact that her bloods are grossly normal, those of you that know Roo's story will see the irony in that! :ylol:

They don't know why she developed the pain but she responded well to Endone in the ER so they released her with a script for the same and orders to return in 48hrs if the pain doesn't settle. She has just emailed me and said she took a tablet at 11am and now she feels drunk, hmmmm, I think 1/2 a tablet might be enough for a slip of a thing like Roo! :biggrin:

Hoping, hoping, hoping that the whole episode settles and becomes a bad but faded memory! :voodoo:

Dusty.


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## AZMOM

Me too, Dusty, me too..........

If not, fly over the pond, come see me and we'll just do this :ybatty: :ybatty: :ybatty: until we can't remember our own names.  LOL

J.


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## DustyKat

Ahahahaha, sounds like a plan to me! 

Dusty.


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## Crohn's Mom

Dusty, 
Just curious ...it's been 48 hours...how is Roo doing with her pain >?


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## DustyKat

Hey T!

When I spoke with her yesterday morning she said it was a 3 and she was feeling better. I haven't had the chance to speak with her today, I don't want to ring and chance waking her up, but either she will be coming home today to do some election stuff or heading back to the hospital! I so hope it's the former. Keeping my fingers and toes crossed! 

Lots a love, :hug:
Dusty


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## radchic

Mine are crossed too Dusty!


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## Crohn's Mom

I"ll cross my eyes too for extra luck !!:hug:


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## DustyKat

Thanks Rachel! Must have worked 'cause she has just emailed me and said she is a little sore but will be heading home about lunchtime! YAY! 

Now all that's left for me to do is worry until I know she is home safe and sound! And then let the spoiling begin! :ybiggrin:

Dusty. :hug:


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## DustyKat

T! I'm too slow again! Thanks hun. :hug:

Dusty.


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## JenEdwards

Dusty, Hope Roo is feeling better today.  

Julie,  The thought of "coconuts" made me smile.  Sounds like something my 6 yr old would come up with.  One day she told me hers were pickles lol.  

Things are going pretty well for us here.  K goes for her bloodwork tomorrow.  Hopefully what she is on has been working otherwise she is going to be put on a new med.  Polllen season is starting here so chances are the next couple weeks we will all be sneezing and my youngest will go around with her asthma/allergy cough.


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## MomofIBD's

:ghug:Group Hugs to ALL the Wonderful Parents!!!!  Seeing our Kids go through so much just to be a Kid.... then add to that this Hideous disease! WE WILL WORRY!!!  It lurks in my mind all the time.....every little ache & pain he brings to me! 

Dusty thanks for starting this Topic!  I so hope Roo is feeling better & nothing much comes of all this.


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## DustyKat

@ Jen. Keeping my fingers and toes crossed that K's blood work is normal! Keep us posted! Hayfever season......blah. :hug;

@ Mom. Hope all is well in your camp! Worry, worry, worry, worry.....................it's sure what I do best! :ylol:

It's so good to see Roo in person! I don't think there is anything better than being able to eyeball your kids so you have a better idea of what is going on. She had a bit of a sore back yesterday from the long drive but has woken up this morning in no pain! YAY! 

I asked her last night if she was going to take an Endone before bed and she said she didn't bring them with her. When I asked her why she said "I'd feel a bit strange carrying that sort of stuff around!" :lol: 

Dusty.


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## radchic

YIPPEE!!  Commence spoiling!


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## DustyKat

Haha, thanks Rachel! The spoiling has indeed begun! :wink:


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## MomofIBD's

Dusty....It's funny you should mention "CAMP" that's exactly what I am worrying about! In our public school district in the US where I live. The 6th graders go to camp for 4 nights & 5 days. It's educational with lots of fun! Daniel is doing a lot better but is finding that he can only eat certain things like a bland meat, rice, potato diet. But no milk or cheese. A tiny bit of lactose free milk added for cooking is ok but that's about it. It is helping keeping his frequent flyer miles down to 2-5 times a day. About every other week he is catching what ever is going around resulting in missing more school because of high fever for a day here & there. I think he has missed over 30 days this year. Well the tricky part to camp is that they hold it at a Jewish camp (only one big enough to hold all the kids at once & very very nice)! They will work with the kids diets too but one day is milk meals & one day is meat meals! Not sure what to have them feed my child? We are still feeling our way through all this diet stuff! 
We are off to the GI Dr. today (more school missed, a day & 1/2 this week missed)! 
My 21 year old son is off at College, he had emergency surgery & DX with IBS 2 years ago. I totally understand that whole seeing your kid in person....I always get the "MOM I am fine....everythings OK....BLAH BLAH BLAH...."! But when I see him I know he is not taking care of himself like he should.....Sighhhhh but he is an adult! 

:bigwave:
Waving to ALL & Hoping what ever is going on in your neck of the woods is gently passing bye! 
Julie, MOM, Rachel, Jen, Mark, Joan, AndiGirl, & Angel:bigwave:


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## DustyKat

Hey Mom!

The whole camp thing is a bit of an obstacle course ay? I don't imagine there will be too much R&R for Mom while Daniel is away! :eek2: You'll have to visit the Worry Club instead!

When is the camp? 

Dusty.


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## Astra

:bigwave:  back atcha Mom!
hope all's well with you and your happy brood!

Dusty, so glad to hear that Sarah is on the mend, and I'm happy to report, so is Jess!
She's coming home 1st April for a month, and yes it's so good to 'see our kids in person!!'

Everyone stay well
xxx


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## Crohn's Mom

I definitely feel part of this "worry club" today...:angry-banghead: <<that's how I feel !

Our morning of pre-op started out to be good.  All of Gab's blood work came back looking good with no signs of infection.  And then....her urinalysis came back showing she has a UTI, then we had to go back to the lab for a repeat collection to see if there's anything growing. So they have added an additional antibiotic to her long list of meds for that.  It does explain all of her extra lower back pain this last couple of weeks tho.

Meanwhile, we met with the urological team that will be assisting in her surgery.  I knew there may be "something" going on with her kidney, but really didn't know the extent.  They are about 90% sure they will be inserting a permanent stint into her uretra; and she possibly has some kidney damage due to swelling of the kidney (hydroureteronephrosis). (THIS DAMNED DISEASE ! :ymad  He said he's doesn't think there is according to her blood work, but they won't be sure until they get in there and see for themselves. There are 3 urological surgeons that will be in the operating room with her ! 3??? What's with that ????

Then to top things off I requested a copy of her MR enterography report from January....I shouldn't have read it.  I wish I hadn't.

I'm just going to write one sentence out of it here and I'm sure you can get an idea of just how bad my poor girl has this disease....

"The terminal ileum, ileocecal valve, cecum, and proximal ascending colon are *unrecognizable*, caught up in an inflammatory mass of clumped bowel, inflamed fat, and lymph nodes in the lower right quadrant."...

And then the topper....we had to go for an ostomy consult.  They taught her all about the illestomy that supposedly she won't need.  If that's the case then why did they "mark" her so the surgeon knows exactly where to put it and then insist that if those marks come off before Monday to make damned sure they know it so they can put them back before the surgery ?!!!???

I just want to cry....I'm sorry...I probably should have put this on the "vent" away thread huh :duh: 

Im sure I'll jump right off my pity me horse quickly and get back to little ms positive shortly :ywow::ywow: 
It's just been one of those days.....I am so thankful that her surgery is on Monday though! Can't come a second too soon !!


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## Astra

Aw Tracy!
I've just posted in another thread about Gab's good news, I'm so sorry this has happened since.
It's ok to vent, cry or whatever hun
We're all here for you.
Fingers crossed for Monday, hope it's a good outcome.
Have a stress free peaceful weekend
xxx


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## DustyKat

Oh T,  . I wish I could be there with you now. :hug:

I reckon it's a good thing they will have 3 urological surgeons in the OT. I think maybe they are doing that because of Gab's age and in their own words......we won't know for sure until we get in there. They won't want to make any definite decisions about treatment without consulting with someone else (3 heads are better than one), they want the best possible outcomes for Gab's. I can't say for sure T but I know Roo's problems with her kidney were long standing and she certainly had Hydroureteronephrosis and the renal ultrasound 3 months post op showed everything was back to normal. I just hope this may give some glimmer of hope to you. 



> "The terminal ileum, ileocecal valve, cecum, and proximal ascending colon are unrecognizable, caught up in an inflammatory mass of clumped bowel, inflamed fat, and lymph nodes in the lower right quadrant."...


This is where Sarah's disease was located. Perhaps Gab's has a little more ascending colon affected but I think Sarah had a more ileum. I know it's bloody hard T but try to focus on the word *proximal * ascending colon, to me that indicates it affects only the first part. 

I just don't know about the ileostomy T. Are they preparing for the fact that there may be too much inflammation present? I know that if this is the case they will do it so they can preserve as much bowel as possible. Godammit T this is my biggest fear with Matt as well, they still haven't ruled it out with him. 

I would be crying T, hell everyday I do Matt's flush and dressing and look at his tummy I just about cry at the thought of them cutting into my baby!!!

:hang:  Mom! You are doing a fab job! 

It's so bloody hard and unfair but we are all here for you and Gab's T. 

Sending you mega loads of (((HUGS))).....:hug::hug::hug:
Dusty xxxxxxxx


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## Crohn's Mom

..."Inflammation extends cephalad from here to contact the proximal transverse colon, probably a fistula.  There is also extension to at least one, but probably two more proximal ileal segments."
(_that's more of the "findings"_)

Are the transverse and ascending colon the same thing ?


and btw...that "alien baby" is what is obstructing the ureter and causing the hydoureteronephrosis.  It does ease my mind a tad bit to know that Roo's kidney was involved as well and she is ok.  Maybe there's hope?  I know Roo went undiagnosed for a long time; Gab may as well have seeing as how none of the treatments have fazed this damn thing yet ! 

*What a mess !!*  :grumpy:

Dusty..I can not even imagine what you are going through with Matt ! You have been through hell and back with Roo and now watching a second child go through this...and still...not_ knowing _ !!

Sending the hugs right back for you !! (all of you! ):hug::hug::hug:


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## MomofIBD's

Oh MOM.G....Gentle Hugs Girl! You have every right to Worry, Vent & let your feelings free here! Dusty is right 3 Urologists are better than 1!  

In answer to your ?. The TRANSVERSE colon is the part above the belly button that goes across your abdomen. If you follow that from your left side to your right side & continue down the right side towards your appendix this is the ASCENDING colon. At the end of the ASCENDING colon is the cecum, appendix, & where the small intestine or ILEUM meets up with the colon.  I hope this helps. 

Dusty yes I will worry ..... but not as much as my DH will get to see him twice during the week. My husband is a DJ on the side & they will have a dance for the kids during the week. Also they have country line dancing another time & he will help out that DJ. So he will be able to see for himself how he is. As for the Dr.s appt. today....(minor grumble) I felt like I was at a fast food drive through. Daniel is doing good & the Dr. was rushed so in & out we were. Minor are his issues compared to so many here. But he all in all he is pleased with how he is doing. He wants us to keep a close eye on him as the C-Diff could have caused progression & that 70% of kids his age end up on Imuran in the first year of DX. His problems with C-Diff, Strep, Stomach Bug, & other sicknesses has masked how his Crohn's is really doing. At least the blood levels are good. We don't go back till the end of June. 

Joan....The Brood is good. BTW I love your name! It was my mom's & my middle name!

Gotta cut this short I am off to work. Work nights & it's my weekend! 

Many Hugs to you ALL! Night Night!


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## Crohn's Mom

Thank you so much for that explanation! I was literally putting my finger on my tummy and tracing the Transverse around to the Ascending, etc..LOL .  Makes perfect sense to me now...Trans = across; Ascend = down; whoopie ! 
At least this nasty disease hasn't gone around the full loop yet ! 
Trying to stay positive ...trying...tryi...tr...:yfaint:


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## Dexky

T, I'm glad to see you in such good hands!  I know how frightening those medical reports can be.  They sound so cold and indifferent like they are describing some inanimate object.  Hey, that's your baby they're talking about!!!  Come Monday, it'll be alright....


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## Crohn's Mom

Thank you Mark 
Sometimes those black and white words can get ya where it hurts.  I guess it was really no surprise when I read it; It just makes it more real.  
Having the urologist show us the scans of her kidney, and how swollen it is...and then telling us, uh OH, there's a UTI here's some more medicine...it scared me into thinking that not only has the bowel trouble been getting worse since the scan, but also the kidney? 
I will keep busy getting things ready for our stay on Monday, try and spend a little quality time with my 2 sons before I don't see them for a week, and try and breath ! (just a little)

Everythings going to work out....I just have to keep that in mind ! Afterall, I'm of no use to her if I go completely insane right ??:ylol:


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## DustyKat

@T,

How are you today hun? Well aside from worried as hell! :lol:

Are you far from the hospital? 

I'm sitting here today thinking this will be me in two weeks! Yikes! 

Thinking about you guys and sending loads of healing (((THOUGHTS))) and (((HUGS)))......:wub::wub::wub:

@Mom,

It is so great to hear that Daniel is doing well, nothing better than good news! YAY! And even better that DH will be able to see Daniel at the camp! I so hope all continues to go well with your brood..........:ghug::ghug::ghug:...........hugs for all the brood. 

Dusty.


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## Crohn's Mom

I'm doing ok today...thanks Dusty !! 

Just been busy trying to keep my mind busy....I recently bought a new computer so I have been busy trying to clean out the old one and reset it to factory setting so I can pass it along to my brother who doesn't have one :tongue:

I have been thinking about Matt's surgery as well and how close it is to Gab's :ghug: April 7th right ? 

I can't believe it's time for her surgery already ! Tomorrow should go by quickly, I hope.  We are about an hour away from the hospital.  I reserved a nice suite for us to hang in tomorrow so she can have a little privacy; Im sure the prep will be YUCK !! Then we are only about 5 mins away from the hospital the next morning.

I was going to pack everything today but I just couldn't wrap my mind around it.  I should write a list, but my brain isn't functioning long enough to do that ! haha...I will forget quite a bit I am sure and regret not having things :lol:  At least I know I will have my handy dandy lap top and charger ! Most important ! :lol:

I will be sure and update as soon as I know anything on Monday...or before if needed :tongue:

Thanks to everyone for your thoughts, and kind words and consideration !! 
I know my girl's gonna pull through this with flying colors ... and then it's Matt's turn and so will he !! They are FIGHTERS !! :voodoo::voodoo:


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## DustyKat

Awww, that will be so lovely to spend time alone with Gabs before her surgery. :wub:

Haha I'm anal, I have started putting things aside now 'cause I know in 2 weeks time I will be useless!! Airline tickets booked....check, X-Rays.....check, paperwork.....check, magazines......check.....:rof: Bet I still forget something though! :ybatty:

Yep, Matt's surgery is the 7th of April. We fly down to Sydney on the 4th for Matt to attend all his pre-op work up on the 5th. 

Sending you and Gabs all the luck in the world for a wonderful outcome and very uneventful and speedy recovery.....................

:goodluck::goodluck::goodluck:

Loads of love, :hug::hug::hug:
Dusty

PS. I'll be like a cat on a hot tin roof waiting to hear how things go but of course there will be far more important things on your mind!!! :wink:


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## radchic

Oh T.  I am so sorry for all of this.  That is some scary stuff when they go as far as putting the marks on.  That is my battle right now, trying to prevent an ostomy.  Lucas, poor kid, can't even touch his stomach without me jumping all over him.lol  Wishing you and Gab the best of luck tomorrow.  Hopefully, this will all be a distant memory soon and Gab has many years of good health.  Sending healing prayers to Gab and strength prayers to Mom.  FINGERS CROSSED( hey it worked for Dusty).


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## AZMOM

T - Gab's gonna do GREAT.  I just know it.  We'll be waiting for the update!!!!

Love you all - 

J.


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## Zoodles

Tuesday we repeat blood work and find out how well things are going.  It's amazing how a little piece of paper can burst your bubble.

Hugs to Dusty and T who need them.


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## MomofIBD's

Mom.....I've been thinking of You & Gab all day! Sending lots of positive thoughts your way! It's good to know you got the most important things ready to go! That there PUTER! :biggrin:  All kidding aside Know their are Many Across the WORLD Thinking & Sending Positive Thoughts for a very boring Surgery!


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## Crohn's Mom

Thanks everyone ! :Karl:

just a little update :

We had a pretty rough day today, but she has made it through and is now sleeping.  The poor girl had so many medications to put in her little body, I don't know how she did it ! She managed to keep everything down until about an hour a go...then she vomited a bit. (thankfully, it was just a little acidy stuff and not the meds).
She is resting peacefully now.

It's so funny how our children can become "adults" and yet they will never stop being our babies.  I just honestly wanted to swaddle her in a blanky tonight and rock her and hold her and tell her it's all going to be ok :ghug:
Or maybe I just wanted my mommy to do that for me .... 

I am so happy to have found this forum, and just in time ! I can't tell you all what it means to me to have such support, and love and kindness in my life right now.  

Hopefully, after Gab's surgery, when she is *COMPLETELY HEALTHY*, I too can give some advice, and support, and love right back to everyone.  I have tried where I can, and don't feel as if I am "intruding".  I am sure I will get more comfortable as I go along and then you all will be telling me to SHUT IT! :yrolleyes::lol2:

I have found myself logging on here today for words of comfort...not just for me...for anyone...just to read someone else's stories.  Reading these brings a strange calm over me and my anxiety about the surgery tomorrow...so thank you for that !

I will be sure to update ASAP tomorrow! I can't wait to tell everyone the great news !!! 
(see...lil ms positive is creeping back):hug:

Much love and respect to you all !!


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## DustyKat

Hey T and Gabs, :bigwave:

You probably won't see this before Gabs op and I will most likely be asleep when the op is happening. 

I just wanted to wish you both one final good luck and tell you that I am wishing, hoping and praying for the best possible outcome for your baby. I feel your pain and worry T and I want you to know that this will be a turning point in Gabs life, a turning point for the better. These times are the most difficult, your thoughts and emotions are like a roller coaster. One minute you know that this is the best thing for her and the next thing you know you are doubting yourself all over again. 

Roo has only gone from strength to strength after her surgery and I am hoping and do believe that it will be the same for Matt. I also believe it will be the same for Gabs. So here's to good health and joyful times ahead for you both as you rejoice in her new found vigour, strength and happiness. 

:goodluck::goodluck::goodluck:

Lots of love, :wub:
Dusty


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## Dexky

Hey Tracy, we've not experienced any surgeries but I've marveled at the success stories on here.  Tomorrow's gonna be a brighter day for Gabs!  I can't wait to see your happy update!!  I hope you have someone there today to hold your hand, if not, imagine we're all there with you.


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## DustyKat

> Dusty, so glad to hear that Sarah is on the mend, and I'm happy to report, so is Jess!
> She's coming home 1st April for a month, and yes it's so good to 'see our kids in person!!'


I am so happy to hear this Joan! :banana::banana::banana:
Bet you're counting down the days............not long now! YAY! I know you will have a fab time together........:hug:




> Tuesday we repeat blood work and find out how well things are going. It's amazing how a little piece of paper can burst your bubble.


I hope the blood work is all good Zoodles! Fingers and toes crossed! How did the Humira renewal go?

Thanks for the hugs! Sending loads of luck your way for positive results and easy renewals............:goodluck:


Dusty. :ghug:


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## Zoodles

First of all happy vibes out to everyone.

Quick question.  How many parents in the US have a 504 on file (at school)  for their child?  My son's teachers are all working with us but the band director is being an irrational jerk.  My son is crying himself to sleep over his first year in band.  I think the director has found somebody that he thinks is an "motivational example" for other students and this nonsense will stop.  Have requested conference.  Just dumbfounded that something that is supposed to be fun and enriching is a source of extreme stress.

Renewal going as expected- still trying to find the correct phone number for preapproval.  Dealing with the inner rings of insurance hell right now.


----------



## MomofIBD's

Waving to You ALL! 

((((((Gab & MOM))))))) Just a quick note to let you know the first time you see her after surgery will be tough because of the tubes & stuff. But as the days go by & her strength returns & the tubes are removed. All will be a distant memory!  We are in your back pocket today & as the days to come pass Cheering you all on with Warm Hearts of Healing!!! 

ZOODLES......... I am seeing steam on your behalf!!!! :mad2: What a _ _ _ !!! It just makes me so mad. I wonder how he would feel taking the strongest laxative 24/7 for a few weeks & sit in class turning green with pain & what not!!!  :voodoo: This stress is so not good for him at all! Go to that conference loaded for Bear...but do it with class & sweetness gets you farther ! We don't have a 504 as we have a group a teachers & school administrators that are very understanding. That's not to say we won't ever need it though. Daniel has missed over 30 days this school year. We did however get medical assistance through the state. I carry the insurance for the family & it's good but the deductible is through the roof. The state insurance is great & covers all the deductibles, copay's with meds & office visits. It has been a god send. There is no way we could take him to the Dr's or do all the meds he has had to go to & take! The DX in my state at least is I believe an automatic reason to get the Medical Assistance. Not sure to what degree of MA you get with what ever your income might be though? Look into it though! It's a lot of red tape but for us it's worth it! I hope this helps!

Dusty Counting down the days with you too! I guess it doesn't matter whether it's the first time or child....we still worry! It's our middle name! LOL!  

Off to sleep .... only to wake & hear some news!:ghug:

:moon: This guy is sleeping with me for the afternoon! Enjoy your day Everyone!


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## Zoodles

I never thought we would need a 504.  His core teachers have been amazing and this is still mind boggling.  5th grade band??  I am on the board that awards teachers grants so this should be an interesting meeting.

We're working through the state disability insurance- it's currently under review.  I hope to hear something about it's status within next month or so.  How long did it take to get it processed in PA?


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## DustyKat

@Zoodles, That is so awful! What the hell is wrong with that guy! Good luck with the conference and let us know how things go. :hug:

I feel for you guys and the insurance system. Still keeping my fingers and toes crossed that it is all sorted soon. 

@Mom, ahahaha.......counting, worry, counting, worry. Sure helps having you guys along for the ride! Thanks so much.......:hug:

Have a good day sleep!

Dusty. :wub:


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## MomofIBD's

Zoodles I can't remember exactly but he was DX the last days of September & by the middle of November we had access cards. The insurance cards arrived in the very beginning of December & activated the middle of December. I know they went back retroactive for 3 months on unpaid bills. They started to pay for copays for everything as soon as we got the access cards. I am thinking a little over a month. Our 14 year old son the only one that doesn't have an IBD or IBS has ADHD. We applied for him at the same time & he also got it too. Wish we had done it years ago for him! keep plugging & I hope it comes through real soon. As for being on the board....mmmm Poetic Justice as the Band needs a lot of Grants. I am not so sure how things will go when we get in the High School. We may need one then. We had some issues in past with an older son who had another health issue in High School.

Dusty a Super Dooper Loop ride or Sudden Drop ride? Lol!!! It 'twas  a good sleep. Now it's off to to be a "mom" & then to work!!! BTW has anyone heard anything on Gab? I will go read for a few & see!


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## Crohn's Mom

Update: surgeon just called down and said "going good. Another 1-2 more hours." 
Anticipation is killing me... Were going on 6 hours now! 

Will update more soon


----------



## DustyKat

Hi T!

We're all hanging in there with you! So great to hear that everything is "going good". Thinking of you and Gabs. :hug:

Dusty. :wub:


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## radchic

Thinking of you guys.   I like the "going good" part.


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## Crohn's Mom

I'm so sorry I'm not goin to write much. She pulled through and is in recovery. 
She has an illeostomy (6 mos min. W a 50% chance of reversal) 
Doctor said he's never seen anything like what he saw in there! 
Over 100cm of intestine removed. 

I am spent.  

Thank you all for your prayers! It means so much! 
I will update more when the flood stops....


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## Dexky

Sorry for Gabs T!!  I know it isn't the result you were hoping for but she should at least have a long break from the pain.  I hope she doesn't have much trouble adjusting to the bag.  I know it'll be hard for someone so young to accept.  Bless both of your hearts!!  Hang in there!


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## DustyKat

Oh Tracy, my heart goes out to you and Gabs. I so wish we weren't so far apart. 

I know well the feeling of not wanting to talk, when the emotion is so overwhelming and raw. Just know that we are all here for you both, that we understand and you don't need to say anything. 

You are both in our thoughts and prayers and we will be here waiting for you when you are ready. You are not alone T..........

:hug::hug::hug::hug::hug::hug::hug::hug:

:hang:  All my love to you and Gabs, :wub:

Dusty.

We will talk later. xxxxxx


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## Guest

Crohn's Mom said:


> I'm so sorry I'm not goin to write much. She pulled through and is in recovery.
> She has an illeostomy (6 mos min. W a 50% chance of reversal)
> Doctor said he's never seen anything like what he saw in there!
> Over 100cm of intestine removed.
> 
> I am spent.
> 
> Thank you all for your prayers! It means so much!
> I will update more when the flood stops....



hi Crohn's Mom... i've just spent a few minutes updating on everything leading up to Gab's surgery. my apologies for not popping in here before now, there seems to be just so many new threads and posts to get through every day!

i just wanted to offer some words of encouragement and support... i'm glad that your daughter has finally had the surgery, by the sounds of it, all that nasty stuff had to come out, and her body now has the chance to recover and give her a good quality of life back, and you a lot less worry..

i know you & Gabs weren't really expecting the ileostomy, and in this kind of situation it is hard to accept at first, but speaking from experience, it can be the most amazingly positive step when someone has been so ill previously. you'll both be on a learning curve for a little while, so if there's anything you need to know, either shout out in the stoma subforum, or if you like you can pm me privately - if i can help, i will.

try not to dwell on the amount of intestine she's had removed - i lost all my colon in one operation, and i'm still here to tell the tale.

wishing Gabs a complete and speedy recovery, and i hope you can calm down a little now and relax. it's a been a bumpy ride for you too.


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## AZMOM

OH Tracey!!!!!!!!  What a day!!!!!!!!!!!  My goodness...............

I know this isn't what you were hoping for and you can grieve for the lost centimeters all you need to!  You can deal with anything when you know what it is.......I usually like to add to that.......you can deal with it but you do NOT have to like it.  No one wants a day like that for their child and I'm so sorry you have been through it.  

Like you, I'm always looking for the silver lining.  So here's a little of the one I see.........that ol' nasty, jacked up, made your baby feel bad, piece of bowel is GONE.  This could be the best thing that has happened to her even though it doesn't feel like it at the moment.  I mean it!!

I have a dear friend in AZ who's son was NEVER in remission.  From the age of 10 until he was 18, they fought having surgery.  He finally had it and that kid is SO happy.  He has never felt so good.  And you would NEVER know unless he chose to tell you.  

Okay, enough sunshine, you go love your baby.  Try to take care of yourself.  She's gonna need you big time.  And I'm gonna take some time to pray for you both - specifically, that today is the first day of Gab's new start with healthy insides and for the strength you need to be the great Mom we know you are!  

Big hugs - wish I could give them to you in person.

J.


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## MomofIBD's

Oh dearest MOM!!!!! I can't say it any better than what everyone else has said it!!! 
Extra Special Hugs of Healing & Suport!!! Go ahead & let it all out!!! We are here!!! 
(((((((MOM)))))))  (((((((((GAB)))))))))


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## Astra

From one Mum to another, I can't imagine what you're thinking, or feeling but I think I know!
I wish Gab a speedy recovery, and a happy, very long, healthy life without the diseased
piece of crap that has kept you both so distressed for far too long!
Oh happy day!
Lotsa hugs!
xxxx


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## radchic

Oh Tracey.  There are really no words to describe what you are both going through.  But rest assured there are many who have gone down this road before and they are a wealth of knowledge and support for the both of you.  Sending big hugs and strength to you.  Stay strong, you are doing an amazing job for your daughter.


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## Crohn's Mom

Thank you everyone ! 

I posted a "new thread" because I wrote a long one LOL.

It's  "Our Surgery Journey", in the Parent's section

I figured I should probably stop hijacking Dustys worry thread....other peeps need some space to worry too ! hehe


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## Zoodles

Well my issue is resolved.   I felt a bit like Cartman "respect mah authoritah" but they are backing down and doing positive reinforcement for all students.

Worried that my son is a little type A and need to teach him when to not sweat the little stuff.


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## Dexky

Zoodles said:


> Worried that my son is a little type A and need to teach him when to not sweat the little stuff.


When you finish with him, could you teach me too Z??

Glad the insurance and school worked out for you!!


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## JenEdwards

So anyone want to take a guess on how long it takes to get bloodwork results?  K had hers done last Thurs afternoon and I haven't heard anything back yet.  I am anxious to know what her levels are and if the meds are working for her.  I hate the waiting game.


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## DustyKat

We get all the run of the mill tests back the next day at the latest. Matt had bloods done yesterday morning (Thursday) and I will get the results this morning. 

Don't wait, give 'em a ring! 

Dusty.


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## AZMOM

Jen - They are done.  Most the same day they are drawn.  If you can, just go to the hospital and pick up a copy!  That's what I do every time!  (I'm more than a little crazy though - lol)

J.


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## MomofIBD's

Jen The waiting is so annoying! A lot of times we have to wait for the Dr. to review them before WE get the results. Not just with the GI Dr.s but with any of the Dr.s ....mine, my DH's, EVERYONES! It's very frustrating! One thing that I have had to do is get a Back Bone a few years ago when going through some testing for something for myself a few years ago. I find calm & level headed gets me farther....even when you don't feel any way near that! 

Zoodles I am glad you got things smoothed over! The other is easier said than done!


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## AZMOM

Well today I'm officially glad the scopes are scheduled. I had my "weekend viewing" of Claires stool.  By the way, it is no longer "coconuts", we've moved on to "guava". "coconuts" is so passé. 

It is completely unformed and plenty of bright red bleeding and mucus. Not enough to make the water red but enough that had we not already been scheduled for something, I would have been making the phone call!

I think she's not feeling as good as she normally does but her answer is always "fine" because....well.....she's Claire. 

I hate Crohn's but love you all-

J.


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## DustyKat

Dammit J, . I guess you're feeling mighty P@#$%* at the moment!!! I hate the whole lookin' and feelin' good one minute and then BAM!

It's good to know the scopes are already booked and I will be waiting right along with you! Do you think they will move them forward?

Awww Claire is such a trooper, I wish I was there to give her a big squishy hug.........:hug:

:hang: in there J, you're doing a brilliant job!

Dusty. :wub:


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## DustyKat

Zoodles said:


> Well my issue is resolved.   I felt a bit like Cartman "respect mah authoritah" but they are backing down and doing positive reinforcement for all students.
> 
> Worried that my son is a little type A and need to teach him when to not sweat the little stuff.


Sorry I missed this Zoodles! 

Go Cartman! :ylol:. It is so great to hear the issue has resolved. Keep us posted on how things are going!

Dusty.


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## Zoodles

Has anybody's child has stress fractures?  We are suspecting another foot stress fracture- I don't know if it is related to my son being on steroids (no significant calcium sources or supplements at the time) Humira or bum genetics.

Well- bum genetics covers so many things in this forum never really thought about it.


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## Crohn's Mom

AZMOM said:


> I had my "weekend viewing" of Claires stool.  By the way, it is no longer "coconuts", we've moved on to "guava". "coconuts" is so passé.


*LOVE THIS* !! :ylol::ylol:


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## MomofIBD's

Julie...I love Claire's descriptions! Guava & she is "6"!!!  I didn't know what the stuff was till a few years ago! LOL!  She's got the Brains!!!  As for feeling good one moment then beyond YUK the next! Well we all know this disease SUCKS!!!! But it feels good to repeat it!!!! 

Zoodles....mmmmm now that I think about it. My oldest son John was DX in college about 4 years before in High School he had a stress fracture in his foot from playing on the Soccer team. But now that I think about it. He was having stomach problems then but wasn't saying much to us as he just thought he had the "Family" stomach problem (eat something & then end up in the bathroom within an hour). I think he was learning to cut some foods then that bugged his stomach one being milk & he never was a milk drinker. It makes me wonder just how long he had it. He was DX 5 days after his emergency surgery for 2 abscesses where they removed 7 in. of colon, the appendix area, ileum-cecum valve, & 7 inches of the ileum. That's were a lot of nutrients are absorbed & coupled with his lack of milk! It could be. Dare I say "FOOD" for thought! :study:


Sometimes I wish "CROHN'S" had a brain! Then it could understand when I tell it to .....  :kissgrits:!!!!


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## MomofIBD's

As well as having 2 son's with CD.  My oldest son with CD his wife was DX with UC a month after their son was born. That was 2 1/2 years ago & it looks like she is gonna have her colon removed. The remicade is not working but they are doubling her dose & giving it to her every month now as a last ditch effort.  Today she had a sigmiodoscopy (sp) & the surgeon told her "Your colon looks like some one picked it up and pulled it across the parking lot."!  Yep that's how bad it was! Dr's sure have a way with words! The surgeon also told her that they will have to do 3 surgeries to get the job done. Because she has been on too many steriods & there is so much damage! I worry all the time but know they will get through it! 
Needed to vent & let the worry out!!!!!!!!


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## DustyKat

Hey Mom!

Whoa, that sure is a lot to deal with both for you and your son and DIL! I hope all goes well with the surgeries. Keep us posted Mom, do you know when all this is going to happen? 

Sending loads of love, :hug:
Dusty


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## JenEdwards

Ok what's on my mind today fits in this thread.  Kailynn has a sore throat and for the last two days her temp is 96.2.  She's just feeling crummy and I'm not sure what to do with her.  Any suggestions?  I just find it odd that her temp is so low


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## MomofIBD's

Jen there can be many causes to the low temp like anemia, hypothyroidism, & infection. Since she has a sore throat I would get her checked out. Recently Daniel had strep throat but his symptoms showed up like CD, major diarrhea & nausea. No sore red throat or swollen glands. We thought it was a flare & almost missed the strep. I'm not sure what your daughter is taking for her CD but my son seems to get a nasty bug every few weeks. Better to be safe & get things checked. The meds our kids take are powerful drugs & many have major effects on their immune systems. Good luck & let us know how things go. 

Dusty there is no set date yet. She had her first dose of the max you can have of Remicade yesterday. The Dr's want to see how long it helps & go from there. She will get it every month if it works good. The sad & frustrating part is she just graduated from nursing school & can't get a job cuz she is too sick! Besides this always at the back of my mind is the grandson having both parents with IBD! He already has eczema.... Since he was a few months old. Some days the head spins with it all!

Hugs to all the other worry warts out there!!!  Sending a smile in hopes it will get rid of few of the warts to All!!!


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## JenEdwards

Thanks for the thoughts MomofIBD.  I set up an appt this afternoon for her.  The pollen is really bad here so it could just be allergies but I'd rather be safe.  I'm going to take her and her younger sister who's asthma is acting up thanks to the pollen....poor baby coughs all night long.


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## ChampsMom

Zoodles said:


> First of all happy vibes out to everyone.
> 
> Quick question.  How many parents in the US have a 504 on file (at school)  for their child?  My son's teachers are all working with us but the band director is being an irrational jerk.  My son is crying himself to sleep over his first year in band.  I think the director has found somebody that he thinks is an "motivational example" for other students and this nonsense will stop.  Have requested conference.  Just dumbfounded that something that is supposed to be fun and enriching is a source of extreme stress.


Hey Zoodles,

I did a 504 plan with my son's school this year.  I downloaded what they had at the ccfa website, deleted what didn't apply to my son, add what did and took it in to the schools guidance office.  He was not in school for the 3rd and 4th quarter  last year, missed over 6 weeks of work due to a guidance counselor who didn't know how to do his job and heading into 8th grade (with the same guidance counselor) I knew if I didn't do something no one would.  Funny when I walked in with it he asked who put it together.  I told him it was put together by my attornies, some doctors and psychologists.  He said, "Well, you might need to bring your attorney with you if you want a 504 meeting."  I told him, "I'll bring mine, if you'll bring yours.  Then we can swap notes about how well you've been handling my son's education."  Needless to say, I got the meeting and the plan approved - as is without any changes.  

BUT, we had a teacher who was a jerk... Made NO sense whatsoever why she did what she did... Alex' sat next to the door in every class and no longer needed a bathroom pass (most of the teachers hand out 2-3 passes and once you use your passes for that class, you CAN NOT go to the loo in the class for the remainder of the quarter - crazy eh??)... though not required Alex would still raise his hand to let the teachers know he was leaving.  The stinker teacher - has a visual impairment where she can't see peripheral - when Alex would raise his hand to let her know he was leaving, she'd give this huge sigh... and a "sigh... geez yes Alex" or "whatever Alex" or something equally unnecessary.

Finally, I said to her... "You shared with my son and the class that you have a visual impairment yes?"  (Yes, she said.)  I said, "Well how would you feel if every time you tripped, dropped something and couldn't find it, bumped into a door, missed a handshake or someone waving to you I said to you.. 'Geez... didn't you see that.' 'Man... you're kidding, trip again??'  'Whoa, can't you do something about that??'"   She cried.

Now I wasn't trying to make her cry... but I was sick and tired of her making my son cry, which makes me cry.

In the end, I've had enough with the schools and their inability to be kind, caring, edifying and educational... So in talking to our pediatrician (whom I LOVE!!), she wrote a letter asking him to be home schooled.  The county is still required to educate him, so they provide the tutors.  We are out for the remainder of the year (hopefully) and then High School... will see then.

Mean people suck.


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## DustyKat

@Mom, I sure hope the Remicade helps for a long time! It would be hard not to think about your grandson and what the future holds. Huggin' ya and smilin' all at the same time Mom!......:hug:

@Jen, Good luck with the appointment and keep us posted!......:hug:

@Shell, Way to go Mum!!! Just a bugger that you have to go through all that shit in the first place!......:hug:

Dusty.


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## AZMOM

3 CHEERS FOR SHELL!  

Zoodles - I have a 504 in place for Claire.  It is a GREAT way to keep everyone on the same page.  I say do it, do it, do it.  The first time you have a less than empathetic teacher, you'll be so glad.

Hugs,

J.

PS I'm late on this conversation and trying to catch up so if this is a stupid response, just ignore it!  :ywow:


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## Dexky

Haha Shell!!  The only thing that could have made that better is if you'd punched the %^&* in the face!!  OK, not really but still there was a glimmer of hope!!


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## JenEdwards

This is a question off the posting by Shell.  At what point is it a good idea to get a 504 put into place?


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## AZMOM

Jen - We got ours in place at diagnosis.  This was the recommendation from the parents in the pediatric support group.  I was a little lost at the time.  But just a couple of short months later, I was glad I had done it!

J.


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## Crohn's Mom

In my opinion...I would say as soon as you start thinking you may need a 504 plan...then just start the process then.  Better sooner than too late


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## Zoodles

My son's physician gave us the 504 template from the CCFA after he was diagnosed.  I never filed it.  Just couldn't emotionally handle that this was a permanent life changing event.

Talked to the principal, nurse and teachers.  I know we need to make a change for next year and get it filed.


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## AZMOM

Yes, and Zoodles, it doesn't have to be as long as the CCFA one!!!  Ours is a single page.  

Hugs, J.


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## Zoodles

Great, right now all I have in place with the school is a statement from the doctor about missing days and reporting unusual infectious diseases.  

Got results of bloodwork last night and this was the first normal panel in a year and half.  I'm feeling great.  Hope my good luck spreads throughout the thread


----------



## MomofIBD's

I AM MAD!!!!!!   Worried too! It looks like I spoke too soon about being on good grounds with the school! Daniel missed a day of school 2 weeks ago because of a sinus infection. The Peds put him on bactrum & 2 pills caused vomiting & 30 trips to the Loo! Took him off the med & within a day he was almost  back to normal! Crohn's normal! Well we just found out that day was unexcused because school/state policy/law/rule says he has missed 22 days of non consecutive days & thus now has to have a Dr's written excuse stating WHY & FROM WHEN to WHEN..... And must have indication of debilitating need for! This is for EVERY absence & also tardy!!!!! So if Daniel is on the Loo & he can't get off I gotta take him Loo & all to school!!! Or get charged $300 per Day or Tardy!!!!!!   So will the 504 cover my "Rear Bumper" for this?????  If it does......I almost have a meaning to download the WHOLE CCFA's 504 & whistle dixy as they play my tune!!! Sorry but can you tell I am peeved. It's just that I have asked several times & have given many Dr's excuses to cover that BUMPER only to be told all is ok not to worry & now WHAM!!!  It just smarts & I have been on the up & up with them!  In 6 previous school years 
he has only ever missed maybe 10 days total in all those years put together! 
Also if it weren't for his imune system being shot to HE?? from the steroids he
 wouldn't have missed 1/2 those days or been as many late! Sorry I just had 
to vent...I knew the other shoe was gonna drop I just didn't imagine that the 
sucker could end up being worth $300!!!

I will keep my cool & be the utmost of politeness ........ But would so love to turn around & show them the BUMPER & tell them.....
:kissgrits:

:hug: To All as I am gonna try & sleep so I can work tonight!


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## FLMom

Post


----------



## DustyKat

@Zoodles, Woohoo, great news!!! May it keep on keeping on!!! :banana::banana::banana:

@Mom, Holy cow, I'm gobsmacked!!! Sending (((HUGE))) hugs your way.......:ghug::ghug::ghug:

@Carol, I'm with you hun, get that 504 underway! :eek2:

Sorry guys I can't offer any advice on this one but by the sounds of it I reckon all you Mum's and Dad's in the US should get one of those 504's and shove it down the school's throat or up their a***! 

Dusty.


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## AZMOM

Carol - It is fluid.  You have to have  "formal" review and revision at least annually.  In Claire's it says "or more often as needed".  They welcome me to call and change things anytime!!!

Let me know if I can help you.  It is a good thing to have in place just to ensure everyone is on the same page.

Hugs,


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## vcp420

*glad to join you all*

Been reading some of the thread. This is like free psychotherapy for me. My son was diagnosed last July. He usa 16yo junior in high school.  The year has gone ok and he is only on pentasa right now.  A recent flu made him drop 5 lbs but doctor doesn't want to start anything new. That's ok with me because I am majorly into nutritional management. I don't believe a low residue diet can be good for anyone.  I cook a bunch of stuff with almond and coconut flour that tastes pretty decent. That and "naked fruit" drinks seem to do as much or more than the pentasa. My constant worry is the ridiculous work load today's high school junior has.  He has worked so hard for so long. Without this problem he could probably go to an Ivy league college if he wanted to but now we question will he be able to go away from home at all. I would love to here about anyone's college experiences.


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## DustyKat

Holy cow vcp, I gave a lengthy response to this last night and now it's appears to be lost in the bowels of cyberspace!!! ARGH!!! I will reply again when I get the chance.

Dusty.


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## DustyKat

Okay, lets try again!

I think one of the hardest things with Crohns is that everybody seems to respond differently to treatments whether they be medication, diet, supplements or alternate therapies. There are many here that find a low residue diet very beneficial when they are flaring. If what you are doing works for your son then that's brilliant! 

I would imagine that the final years of school here would be similar to what children experience where you are. My daughter was diagnosed in Grade 9 and although the operation that led to that diagnosis has put her into remission for the last 5 years she was left with short bowel syndrome. This has impacted her life significantly and I think the pressures of not only that but her final year of school caused her to go off the rails throughout that time (2009). Having said that she still did quite well and at the beginning of last year moved away to university. To say I was concerned would be an understatement! I just didn't know how she was going to handle it after the previous year. Well the change in her was nothing less than astounding, she has developed a new sense of belief in herself that I didn't think was possible and she has taken her health into her own hands and is far more in tune with it and her responsibilities than she ever was at home. She has just commenced her second year of study and has achieved things I never thought possible 5 years ago. 

I often wonder where she would be now if she didn't have Crohns and I honestly believe that she wouldn't have achieved even a fraction what she has in the last 12 months. Her drive, commitment and passion has increased immensely.

My son has just commenced his final year at school and is also at university. He was diagnosed with CD at the beginning of December and has not had an easy road of it since. He has had to drop two university units this semester due to his health but is determined to get back on track ASAP. He will find his new groove and he will make it work.

Your son will find his new normal and he will achieve, have no fear of that, He will go to college and he will do very well. There may be the odd detour along the way but I think that only makes our kids stronger and more determined than before!

Good luck and welcome aboard! The ride may be bumpy at times but most of all remember you are not alone, we are all riding along with you!

Take care, :hug:
Dusty


----------



## vcp420

Thanks for the info. The" my glass is half full,not half empty" attitude will certainly take your children far.  I have a seizure disorder myself since childhood. Ironically this has helped my son see that this is not the end of the world and you need not be held back by a chronic illness.  We are fortunate in that we can pay for as many years of college as it will take.   I encourage anyone reading these posts to think of one thing.  There are countless" normal" kids with alcohol and drug problems.  I am greatful my kid has Crohn's instead.


----------



## Zoodles

We finally got our insurance accepted by the state!!!  So, I now have main insurance and his supplemental insurance.  Lord how I hate the word handicapped.  I'm as politically incorrect as they come but it galls  me.

If they pay some bills I can get over it!!

Took Brendan to my internist.  It went really well and I'm feeling better about immediate care.  Doctor is a great guy and reminded us to call or text his cell whenever we have problems.  Versus the pediatrician who is unreachable.  So, I'm getting into a comfy spot again.


----------



## DustyKat

Woohoo, great news Zoodles! So happy to hear that things are working out......:ybiggrin:

:mademyday:
Dusty.


----------



## MomofIBD's

Oh the worry monster has reared it's ugly head again! Daniel went to camp & had a good week. He was actually "Normal" for the week. No major tummy issues. Got home & with in days frequency has reared it's ugly head. This past week/weekend majorly so! At camp there was no fast food...he was very cautious of what he ate .... but then he went with out food if he was worried that it would effect his tummy so he didn't have to run for a bathroom through the woods. So is this the Easter Bunny basket causing problems? Although he isn't eating it like in past years by any means! Yeah maybe but what about days before Easter? Last night was an all nighter....but he still wanted to go to school today. Going to the Peds Dr. today. I guess he is in for another round of tests again. 

I guess the ? I have is can IBS which the Peds GI suspects he may have on top of the CD .... cause enough problems to have a flare? I know Daniel eats stuff that he knows will make him pay for but mostly Chicken & mashed potatoes are his NON problematic foods! Last night he cried that he doesn't want to go on IMURAN! He's scared what the next step will be! So am I as meds really mess with him & make me wonder sometimes which is worse the disease or the !!!!CURE!!!! (saying that loosely as I know there is none)!  
Just needed to let it out in the open!


----------



## DustyKat

Oh Julz, I'm so sorry to hear this. :hug:

I don't really know the answer to your question but thinking about I would have to say that I can see how it may well be possible. If you are having issues with IBS then the frequent trips to the toilet and discomfort cause you distress and upset so you become stressed, and as many, many people on this forum attest to, stress causes them to flare. I don't know, maybe I am drawing a long bow. 

Good luck with the appointment today hun and keep us posted on how things go. I will be thinking about you!

Much love, :Karl:
Dusty. xxxxxxxx


----------



## DustyKat

There are so many here at present that have your precious children facing difficult and uncertain times. They are having tests, surgery, new treatments, new and unknown symptoms and old symptoms that just won't go away. 

I light this candle in the hope that all our children can find relief, good health, their childhood and the ability to lead a full and *normal* unhindered life. 

Dusty. xxx​


----------



## MomofIBD's

Thanks so much Dusty! Well it's not a CD issue.  Daniel has Strep throat again!!!! I did kinda wonder but as it's an easy fix in the realm of things. I just hope so as nothing is as it seams with Daniel!  The drug of voice for him is Clindamiacin as everything else that treats strep he is allergic to. BUT..... It can cause C-diff which we just finished taking 4 months of Vanco for.  So he is on Zithro a double dose & a recheck in a week as it's not the choice to treat but can get the job done some of the time. It worked the last time just hoping it does this time! Strep 2xs in 4 months & he has no tonsils. Also he had no sore throat either just the tummy problems. First order from now on is a strep test if tummy issues arise! Go figure! 

Keeping the prayers & warm thoughts alive for everyone as mine was asimpler fix & so know that others are not having it that way!!! Gentle hugs to All!


----------



## DustyKat

So good to know that it isn't Crohns related Julz! 

I hope the meds knock the infection on the head and Daniel is soon on top of things and feeling goooood! Poor luv. 

Good luck to the young fella hun......

:goodluck::goodluck::goodluck:

Let us know how he goes with the treatment. 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## MomofIBD's

I just found out my Daughter in law was admitted to Hershey because she has Pancreatitis again! I am so worried she almost died the last time with it! Her name is Sarah. 
I am off to work & must go with a very heavy heart!


----------



## Dexky

Man oh man Julz, you've got health issues hitting you from every conceivable angle!  Hang in there is so inadequate but what else can you do. I hope it gets better for you and yours!!


----------



## DustyKat

Holy cow Julz! 

I so hope Sarah is okay and it isn't as serious as last time. Let us know how she is going when you get the chance. 

Sending mega loads of (((HUGS))) and positive (((THOUGHTS))) your way......

:hug::hug::hug::hug::hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## M2M

well I had to kind of laugh when I saw that saying
"The worst thing that happened in my life didn't happen to me".
b/c that is exactly how I feel. When my 23 yr old got diagnosed this past Feb. She had 2 bad reactions to Pentasa & 6MP. 
now dr is taking her off the antibiotics and leaving her just on Entocort but wants to start her on Remicide after June appt. he said it would put her in a better remission; although when she was tested back in Feb all she had was inflammation; no restrictions or scar tissue. 
All I have to say is I; she is the last thing I think about at night and the 1st thing i think about int he morning.
From what I am reading some of you parents have more than 1 child that is sick.  God Bless you .. and my prayers will be with you all. I know this isn't cancer but it still really does suck to see your babies go thru this.


----------



## DustyKat

Hey M2M, :bigwave:

I hate that you found your way here but welcome to the club! :ybiggrin: 

Yeah, a lot of docs go with the newer way of thinking, which is the step down approach...hit it hard straight up. I personally can see the sense in tackling things this way. 



> she is the last thing I think about at night and the 1st thing i think about int he morning.


So true hun and well said, this is certainly one of the things we all have in common. 



> I know this isn't cancer but it still really does suck to see your babies go thru this.


You know, I think this is one of the hardest things to come to terms with. Maybe I'm alone in thinking this, I don't know. I sure as hell never want to hear that my kids have cancer but, how do I say or even think this 'cause it just sounds so wrong in many ways and it probably is. BUT I have found myself at times thinking that at least cancer can have a cure, Crohns doesn't. Maybe it's because many people say to me, when I say Sarah is coming up to 5 years with CD and is remission (is it this word that is the problem?)......"Oh, so she will be okay then? The disease will be gone?" Then again maybe it's just me making excuses for thinking like that in the first place. 

Yikes! Enough verbal diarrhoea and bad thoughts! 

Dusty. :hug:


----------



## MomofIBD's

Good Morning All! I got a slight bit of info through my son by text last night. It seems some blood work was done & what ever her levels were elevated at was enough to warrant Hospitalizing her. She had some strange pain but that's all I know now. But as I remember the last time when I believe it was the Imuran that caused it. She couldn't keep anything down for a week.  In fact it was a anifalactic reaction to a anti nausea drug that was a close call.  A lot of blood loss & "D" too. I think she was in the hospital for 5 days. 
I must get some sleep (if I can) so I can take Daniel in for his recheck. With in a day he was feeling much better. In fact yesterday he was happy that he hadn't had to visit the thrown once in school!!! It's amazing that all it takes to make my crown prince happy is by not having to visit the thrown! (Sarcasticly intended but true)!   LOL!  :yfaint:

P.S....Humor is the way I have always used to get through tough times!!! So heads up I make cracks at me & what's in my life! Sometimes the tougher the times sometimes the more bizarre the humor or just down right "groaners" as I call em!


----------



## Crohn's Mom

@Mom....oh yes, Laughter is THE best medicine !!:rof:
Some of the things that come out of our mouths in our house would send the strongest stomachs running for cover ! LOL

@M2M...I'm right there with you with





> All I have to say is I; she is the last thing I think about at night and the 1st thing i think about int he morning.


  Lately, the two run together so I think way too much ! :lol:

@Dusty...I think we all have those thoughts! I was reviewing our life insurance policy with our agent just yesterday because Gab has turned 18 and we weren't sure what to do.  We talked a lot about Gab and what she has gone through, and then he shared with me about his brother.  He said he became "uninsurable" as a senior in high school due to Leukemia.  I said, you know what Mark, that is how Gab finally got her diagnosis.  We were sent to a Ped Oncologist for a bone marrow biopsy because they thought she had Leukemia; and looking back now sometimes I find myself wondering if that would have been a better diagnosis than this ! He understood where I was coming from.  And I understand where you are coming from.  We hear sooo many stories now about how may people are cured from their cancer.  It's a twisted road, and we're allowed to have a bit of twisted thinking.  And  your right, people just don't get it !  There is not enough awareness about IBD out there, and the only one's who talk about it are the sick ones, or care takers of them. :ghug:
My rant's over...almost....btw...My family is walking on Saturday in the Take Steps, Be Heard fund raiser...so I get to preach about not enough awareness at least until it's over and I find a new one to get involved with! :rof::rof:


----------



## DustyKat

> @Mom....oh yes, Laughter is THE best medicine !!


Ditto T and and Julz! So good to hear that Daniel is feeling better, YAY! and I hope things are going well for Sarah too!. :hug:

@T, well thank god for that! I was hoping I wasn't the only...:devil:...around here! :ybiggrin:

Dusty. :sun:


----------



## AZMOM

We love you, Dusty and I'm pretty sure we're all hell on wheels.    And we're good at it!

J.


----------



## DustyKat

I hate this, I hate this, I hate this f&%#ing disease and the way it consumes your thoughts, feelings and every other bloody thing! 

Matt woke up this morning with back pain and now vomiting...OMG...is it Crohns?...is it nothing?...why now?...I'm fed up..pissed off...and worried...I know you all know how I feel...and now I wait and watch...

Thanks for listening guys...:hug:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Awe Dusty .... I'm sorry sweetie! 
This does F*#%^ng Suck !

Are you thinking it could be a blockage ?
Man I hope not ! This can't happen to him!! 
:ghug::ghug::ghug:

All around you !!

much much love !
~T~


----------



## radchic

Dusty,
Fingers and toes crossed!  And I'll start prayin'!


----------



## Dexky

What a waste of breath telling you not to worry would be but please try to stay positive!  Sometimes a bug is just a bug!!  Hoping so on this end my friend!!


----------



## DustyKat

Thanks guys...:hug:

I don't know what's going on so I will just keep hoping, wishing and praying that it is a passing anomaly and that's it!

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Zoodles

Will add my well wishes and prayers into the mix.  Hope it's just a bug.


----------



## AZMOM

Oh Dusty............:ybatty: :ybatty: :ybatty:
:ymad: :ymad: :ymad: :ymad:

Keep us posted......

Love you....


----------



## MomofIBD's

Aww ((((((((((Dusty))))))))))....I am with ALL the rest! I am hoping it's just some bug! It is scary! Know we are with you in thoughts & positive vibes for the run of the mill gunk!


----------



## DustyKat

Awww, thanks guys, 

He's finally asleep on the lounge!(it's midday here) YAY! With any luck when he wakes up it will all be a bad memory....

Everything crossed! 
Dusty. xxxxxxxx


----------



## Zoodles

Will keep them crossed for you too.  

Sometimes, I wish there was a definite sign that yes it's crohns- instead of constantly worrying.


----------



## M2M

Our prayers are with you; it is the worst thing to watch your child go thru this; we are thinking of you.. keep your chin up   we will pray...it may be a reaction to one of the meds.  that has happened several times with my baby.  
let us know how he is


----------



## Crohn's Mom

Fingers, toes, legs, eyes, ... everything crossed !
I hope he wakes up feeling like a bright ray of sunshine and ready to tackle the world!

much love Dusty!
~T~


----------



## DustyKat

Thanks again guys!

Well he woke up yesterday in no pain and with no further vomiting. Started eating and it was like nothing had happened. I did go to a parent/teacher thing yesterday afternoon and they told me there was a gastro bug going around. Still not sure if that was the case here, I'm thinking the lower back pain, but as long as it's gone and stays gone I don't give a toss! :lol: 

He is still asleep this morning so that's gotta be good and I had the doc fax the blood request straight to the lab so he will take himself there this morning when he wakes up. I'm getting crippled up with keeping everything crossed!

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

I am glad to hear the vomiting has stopped, and that he is resting at least.
I'm sure you will continue to keep that eagle's eye on the lower back pain!
If you figure it out let me know...we STILL can't figure out Gab's! :ylol:
I hope he continues to get better and better !
best of luck !!
:ghug::ghug:


----------



## MomofIBD's

Ahhh Dusty! I am glad he is feeling better! I will say that it is amazing how the regular bugs can make them so sick! Daniel with the strep really freaked me out. It never seemed like strep with all the bad nausea & "D". The last time was 30 times in 24 hours! I hope it ends up being some run of the mill junk! Not that I wish any of it! 

I hear a nice long soak & a massage will help that crippled thing!!!!:wink:


----------



## DustyKat

Yicketty Yikes guys, spoke too soon and we are back to square one! Have updated my other thread so I don't hog this one! :lol:

Dusty. xxx


----------



## Crohn's Mom

So I decided to revive this lovely thread today....looks like it's been a long while since anyone has used it.  Does this mean I am the only worrier left ? :ylol::ylol:  Ya right, I doubt that one !! 

I'm worried about JJ today 
He was fine this morning when we took him to his grandpas to help out with some things he needed.  He was only gone a couple of hours, and just helped some of the senior citizens in their community with their neighborhood rummage sale.  Grandpa said he acted fine, but seemed to be in a rush to come home (which is unusual for JJ) and refused any food.  Well, we are used to JJ not eating much lately quite frankly because this has for some reason become his new "norm".
Anyhow, JJ wasn't home but about 10 mins when he disappeared to his room and we didn't see him for hours.  I checked on him but he was sleeping.  When he woke up he took his own temperature and it was 101.3 F and he just said  he had a headache, a stomach ache and just didn't feel good.  Well my first reaction, because there are several children around our area that are sick, was that he has the flu.
Now, this evening, I am just not so sure.  His fever breaks with Tylenol, but he hasn't eaten all day and is not vomiting, but has been in such pain in his lower abdomen that it brings him to tears.  He had his appendix removed in emergency surgery just over a year a go, so I know that can't be the problem.  However, this is just about exactly how he ended up with that surgery last year...
I hate that every time any of my kids get the slightest stomach ache the first thing I think of is..oh is it Crohn's ??  It wasn't my first thought this afternoon when he first said he didn't feel well...my first thought was "it's the flu coming because that's what everyone else has"...but now, here it is...12:30 a.m. and I'm back to wondering what if ?? 
Ughhh...I just hope he wakes up tomorrow and it's all magically gone 
sorry for the rant, I'm just really hating this disease lately and how I am forced to think about it every single day of my life.


----------



## Tesscorm

Never saw this thread before...   You are definitely not the ONLY worrier!  :lol:  Gosh, now that I've found this place, I'll probably just move in! :eek2:

I'll hope along with you that all is well or, at least, on the mend for JJ by tomorrow!

It's so hard to not always think 'is it Crohns?'; I do it constantly with Stephen and with my daughter.  I suppose that worry will always be lurking.  :yfrown:

Sending wishes that JJ's feeling a bit better by morning!  :ghug:


----------



## ChampsMom

So sorry to hear he's not feeling well!  Keeping my fingers crossed and I just said a quick prayer for you all that this is just a passing bug and nothing serious.  My son has had a couple of days recently where he wasn't really into eating also, and was napping.  I was a bit worried and immediately thought - it's a Crohn's-thing!, but alas, I watched him make a s HUGE bowl of rice and dump 1/2 of my remaining stew on top  of it after a hockey scrimmage tonight.

I think their bodies just need extra rest sometimes.  It's one of the blessings having Alex home schooled now.  He gets up at 5:00 am every day, attends Seminary (a scripture study program for the high schoolers in our Church), comes home and takes a nap on many days... I don't complain too much about the naps as long as he keeps up.  

God Bless!!


----------



## Dexky

Every single day, every hour, every minute!!  I hope he's feeling better this morning!  Good luck T, sorry!!


----------



## DustyKat

I never worry about my kids! :rof: 

Ah hell T...boo! 

I so hope this is just a neighbourhood thing and will soon magically pass! I have absolutely everything, and I mean everything!, crossed hun. You are in my thoughts, prayers and wishes mate...:hug:

:getwell:   JJ!!!

Much love, :heart:
Dusty. xxxxxxxx


----------



## kimmidwife

Crohn'sMom I am there with you and everyone else! I worry about my daughter constantly. Every time she has any aches or pains I worry about it. I hope your son is getting better fast. Keep us updated!


----------



## dannysmom

I am worried with you Tracy!  (Do not like the fever and stomach ache combination) Hope JJ is feeling better today.


----------



## Crohn's Mom

Just an update....JJ's fever has almost broke.  It's staying around 99 F, but I don't give him Tylenol to help with the fever unless it's 101 or over.  I am of the belief that our bodies need to fight on their own as much as possible.  So although, I am happy that his temperature is down, he's still not all better.   He still has a headache and a stomach ache, and this morning he came to me and said his urine is very, very dark.  I've been pushing lots of fluids on him since then, but strangely he's not peeing very often (nothing since this morning) and his lower back hurts now too.  I hope he's just a bit dehydrated from not feeling well, but I'm concerned something else is going on with him still. 
I kept him home from school today which is a good thing because of the urine and he's extremely fatigued even after sleeping 14 hours last night.  Poor kid.. wish I could take it all away for him.
Thanks everyone for your kind thoughts and words ! At least I know now since it's been 3 days that I wasn't wrong to worry  I may call the doctor and take him in if he doesn't start peeing in the next hour or two.  Any thoughts on this ??


----------



## dannysmom

A phone call to the doctor sounds like a good idea to me. (I am glad the fever is down but wish he felt better)


----------



## DustyKat

Hey T,

Personally I would give tylenol but of course that is your choice.  

As to the urine, he will most likely be dehydrated so look not so much as to how often he is going but that he is going and as he consumes more water if his urine is becoming lighter. If he is drinking reasonable amounts and has no vomiting or diarrhoea and the urine remains dark then definitely go to the doctor. 

There also remains the question of what dark is. Is it the darkness of concentrated urine or is it a different kind of dark. If you don't think it is concentrated urine then also get him to the doctor. 

Lastly T, trust your gut, if anything at all is not sitting right with you then make call, if it turns out to be nothing then your peace of mind is well worth it, if it does turn out to be something, well you know the score... :hug:

Thinking of you mate, :heart:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Thanks Dusty 

YEAH ! All that water I forced on him finally came through..and clear !! 
Whoo...scared me for a bit LOL.
His fever has finally broke as well ..
He's just resting up and hoping that his headache goes away...although, I doubt it will since he's had one daily for several months now   I'll probably give him a Tylenol before bed to help him rest now that his fever is broken.
Thanks so much for talking me off the ledge everyone! LOL
much love to you all


----------



## ChampsMom

Great news!  Can he handle G2?  Not sure if that's in the liquids your pushing...  

I think we need a "like" button (smile).


----------



## Tesscorm

Glad to hear he's doing better! :thumright:


----------



## kimmidwife

I am so glad he is doing better. I was worried when I read about the dark urine and I could not reply because I have not figured out how to reply from my phone and just finally got on the computer at home.


----------



## Dexky

Sounds like things are on the mend T  I wish you'd get a long stretch where no one's health has to be constantly on your mind.  Including your own!


----------



## Crohn's Mom

Welp...so much for thinking he was getting better 
We have an appointment to see his pediatrician at 2:30 today; I'd rather be safe, than sorry and stuck until Monday because they're closed for the holidays.
JJ's in a lot of stomach pain today and basically refused his breakfast because it hurts too much. His temperature has started to rise again as well...just a tad...but a tad none the less...
I'm still hoping it's the "flu"...:ybatty:


----------



## Tesscorm

Oh, I hope it's just the flu and he's feeling better within a day or two!!  So you can all enjoy the long weekend! :ghug:


----------



## DustyKat

Ah hell T...:hug:

I hope it's just the flu too!!! 

You are all in my thoughts hun. Good luck with the appointment!...:goodluck:

Much love, :heart:
Dusty. xxxxxxxx


----------



## kimmidwife

Good luck! keep us posted!


----------



## Jessi

My 11 year old daughter (Aspyn in my avatar picture) has me concerned. She has been going on 2 years of stomach pains, associated with constipation, diarrhea, and gas. It alternates a bit. But she ALWAYS feels sick. We've seen the doctor (pediatric GP), and we've tried eliminating certain foods. Nothing seems to make a difference. I can't pinpoint any problem foods at all! Plus ~ she is super picky about what she eats, if I can get her to eat in the first place.

The military doctors seem well-intending and educated, but they seem to go at a seriously slow rate of getting to the bottom of things. Maybe I'm just a bit impatient, because my own diagnosis was quick. I'm frustrated.

She also has suffered from frequent headaches. We're not sure if they're chronic aches or migraines or whatever. I just hate to see her suffering so much. 

Aspyn has had skin problems (eczema or psoriasis) for about 5 or 6 years. She is very short - shortest child in all the 6th grade and even shorter than most of the younger kids in 5th grade. My family is pretty tall, so she is the same height as her 7 year old brother. She also has trouble with her vision and her ears. It just seems like too much is hand in hand with IBD and the common extra-intestinal problems. 

Do you think I'm paranoid or does this concern sound justifiable?


----------



## DustyKat

As much as I hate to say it Jessi, it sounds more than justifiable to me.

I don't think you are being at impatient hun, after all you have watching this for 2 years now. 
I think an appointment with a paediatric GI is well within order and I guess that's what you are thinking too...:hug:

Outside of the abdominal issues Sarah didn't suffer with skin complaints but she did have the frequent headaches and eye issues. 

Just an observation, from my side of things, about the eating. Matt had a very limited diet too, a few foods that he always seemed to prefer over all others and I often wonder if his body was telling him something that he wasn't consciously aware of. Interestingly enough most of those foods fit into what is recommended in the low residue diet! 

Thinking of you, :heart:
Dusty. xxxxxxxx


----------



## ChampsMom

Holding my breath!  Alex had his first cramp in about 6 months today! We were at the funeral of his Goalie coach from last year (stressful day) - I *pray* it was just a "hiccup" (ugh...)

Crohn's *sucks*!


----------



## DustyKat

Oh my goodness Shell, that's gotta be tough...:hug:

I'm praying right along with you! 

Thinking of you guys, :heart:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Oh my gosh Jessi ~ your daughter sounds like she could be JJ's clone ! 
:shifty-t:

You are not out of line at all for worrying...I agree with Dusty, 2 years is a long enough "watch and wait" and I would get her to a ped GI just in case 

I'm still shaking my head at how you described her...the similarities with her and JJ are mind boggling to me !
Speaking of...I'm going to go back to updating in the "Undiagnosed Kids" thread again about him because of the interesting turn of events today !
I need to get a bite to eat first as we have been gone since 2 today (its now after 7).. we thought we were just running out for a quick check in with the doctor...wow ! My head is spinning now and I have some more research to do! 

Champsmom...I'll hold my breath with you and hope it's just the stress of a very hard day giving him a pang :shifty-t:  Fingers crossed !!

Thinking of you all 
xoxoxox


----------



## Tesscorm

Jessi - Wow, I don't think you're being impatient at all!   It took 2-3 months of tests and on/off again symptoms, going to the local hospital and getting nowhere with his pediatrician before we finally took my son to Toronto's children's hospital and he was tentatively diagnosed with Crohn's within hours and confirmed in a few days after an endoscopy and colonoscopy.  But, if I had listened to his doctor, she had wanted to wait ANOTHER month just to see if the weight loss (had already lost 20 lbs), fevers, diarrhea, anemia and fatigue continued and then would consider other tests to run!  I knew something was wrong and didn't need another month of symptoms to prove it to me.  You know your child, I know the nurses/doctors sometimes think I'm paranoid but _'whatever'_...  it's my child!  We're lucky in that we have a large children's hospital nearby but, I think you should trust your instincts and persist in asking for a referral if necessary.  Good luck! :ghug:

Champs Mom - must have been a rough day for Alex!  Hopefully, all is better by tomorrow.  Stephen sometimes has a random symptom and I know, all I think is that 'oh no, it's starting again!' and, so far, it's always been something that has cleared up quickly.  Hope you find the same with Alex!!:ghug:


----------



## ChampsMom

Hey Jessi - I agree with everyone - 2 years - it's time to see someone else.  My son still gets the headaches even when everything else seems normal.  Sometimes I wonder if it is a hydration thing?  I'll give Alex tylenol for headaches, but I also tell to add extra fluids when they come on.  Seems to help.  If she's super picky, is she equally picky at drinking fluids?  

The vision part (as sad as it sounds, but I've got to find my laughs where I can get them!) makes me laugh!   Alex used to complain about not being able to see in the classroom, so I took him to get his eyes tested and he sees 20/15!!  Not 3 months later, he complains again, so I take him back 20/15!  I told him if he wants cool fashion frames with plain "glass" he'd had to pay for himself and I wasn't going to get his eyes checked again for a year!  Not 6 months later we were in the hospital and they tell me one of the signs of Crohn's is the occasional blurry vision (ouch! laughs...)  Grateful Alex also has a bit of quirky sense of humor!


----------



## Crohn's Mom

just curious Champsmom....when Alex complained of vision issues, and you took him to get his eyes checked, did you allow them to dilate his eyes at the exams?


----------



## ChampsMom

Crohn's Mom said:


> just curious Champsmom....when Alex complained of vision issues, and you took him to get his eyes checked, did you allow them to dilate his eyes at the exams?


Trying to remember, but looking back, I think they just did a regular eye exam (for eye glasses).  Almost everyone in my family wear glasses (eventually), including my siblings, neices, nephews, etc... so I don't recall them doing anything like that.

Is that something you've had done and if so what does it reveal?  

Thanks for asking me!


----------



## Jessi

Thanks everyone for caring and understanding. :hug: This is an extremely difficult thing for me. I love my baby girl and don't want her sick. Don't we all feel that way about our little angels?! Alex, JJ, etc... 

Aspyn is kinda picky about fluids, but not nearly as bad as she is with solids. Sometimes I wonder if I should get her onto a liquid diet, but I'm so confused. I don't know what's best for my own child anymore. 

The toughest part of all this is that I can't get to a pediatric GI without a referral from her military GP... I can't afford to get private care, so I need to stick with the military route. I'm just tired of being on their back burner. 

*rant over*


----------



## ChampsMom

Hey Jessi, I'm so sorry to hear it's so rough... My dad was in AF growing up so I only ever saw military doctors... Be persistent with them - you *are* the best advocate for your daughter!!  Heavenly Father put her with you because HE knew that you would be able to help and support her!!  

The liquids are not going to solve the problems, but I feel strong that they will help her skin.  My second son has a tendency to dehydrate really easy!  He's been hospitalized 3 times for it!  He's a great "drinker", but come the hot season I just have to stay on him, or if he gets a stomach flu, he's quick to go down hill.  Everytime he starts to dehydrate he gets spots of eczema/psoriasis.  Once his hydration is up, his skin clears up - oddest thing!

Never think (and don't let anyone convince you otherwise) that you're being pushy when it comes to the health of your children.  

You go girl!  (Follow that Spirit that's prompting you!)


----------



## Jessi

You're so right, Shell. I just sometimes have these "down" moments where I doubt my worth and ability. But she loves and trusts me. I'm the one she comes to. :hug:

She handled our Thanksgiving meal really well. She didn't get sick at all.  Plus, she was in the kitchen with me almost the entire day!


----------



## ChampsMom

Jessi said:


> You're so right, Shell. I just sometimes have these "down" moments where I doubt my worth and ability. But she loves and trusts me. I'm the one she comes to. :hug:
> 
> She handled our Thanksgiving meal really well. She didn't get sick at all.  Plus, she was in the kitchen with me almost the entire day!



Oy!  Made me tear!! (So testifies the Spirit!)  Love it!  Glad yah'll had a good day with it.


----------



## k'smom

*New Mom*

My daughter, who is 16, was just diagnosed 2 months ago.  She has tried 6MP with no luck and the steroid isn't holding her much either.  She is due to try Remicade and is a bit scared.  Any advice.  By the way, how do you parents handle when your child is so angry and emotional?  I feel sorry for her, so I have sort of let it go, but I don't know if this is the best thing.


----------



## DustyKat

Hi k'smom and :welcome: 

I'm so sorry to hear about your daughter...  :hug: ...It's early days yet for you both so I'm not surprised she is scared, bless her. Both of my children were diagnosed in their teens and it is such a difficult time. My daughter struggled quite a bit emotionally in her last year of school and I guess what I learn't over time was to choose your battles and don't stress the small stuff. Sure, I have no doubt in my mind that Sarah got away with things that under other circumstances she probably wouldn't but that's where choosing your battle comes into it. I would walk away from a confrontation and only go back to it once I had time to think about what is was about and if I really needed to do or say anything about it. It doesn't mean I let het get away with things as such but I felt at times there were far more important things to expend my energy on. 
I also subcribe a bit to the idea that home and family are their comfort zone. A place to say and do things they wouldn't anywhere else. I think our kids need that, a place to let out their frustrations and disappointments and often it is aimed at us. I think you will know deep down what is acceptable and what isn't and there is no right or wrong with the decisions you come to, just what is right for you and your child.  

My children haven't been on Remicade but there are other parents here with children on it and we also have a Remicade forum here that would be helpful for you to have a browse and maybe ask some questions there as well...

http://www.crohnsforum.com/forumdisplay.php?f=58

I know it's hard right now Mum but things will settle over time, it does get better! Good luck hun and I hope you stay around cause this is a great place for support, info and laughs! 

Dusty. xxx


----------



## Dexky

Welcome K's mom!  I'm a little surprised they'd be so quick to give up on 6mp.  It can take up to six months to become effective.  When my son was on it, it took 4 months to reach therapeutic levels.  I haven't heard anyone say it became effective at two months.  I'm not suggesting she shouldn't take the Remi.  Perhaps her GI would have preferred Remi to begin with?  If so, imho, they shouldn't have started her on 6mp if they weren't going to give it the requisite time.


----------



## Kat

Hi K's Mom.....  My daughter was diagnosed a year ago when she was 14 years old.  (she will be 15 tomorrow) and has been on Remicade since January.  It has been a "miracle drug"!  She went into remission almost immediately.  After the intial ramp up, she was going every 8 weeks for her infusion.  After about 9 months, we had to move it up to every 6 weeks as she was showing symptoms.  She does great every time we go and she feels great afterwards - no problems at all.  She has no side effects.  

As far as the anger and emotions, I agree with DustyKat - my dughter went throught the same thing when she was on Prednisone.  It was beyond awful, I just picked my battles and she probabley got away with much more then she would have.  But she is back to being a "happy" teenager now.  

Hope all works out with your daughter, it has been a roller coaster year for us looking forward to a new 2012!  Merry Christmas!


----------



## M2M

k'smom
1st of all I am so sorry that you & your daughter are having to deal with this. My daughter was diagnosed in Feb of this year (2011).  the 1st few months were horrible.
I found a dr we really trusted a specialist in crohns.  I like that we can discuss different treatments with him.  My daughter was put on Pentasa right a way; and then Entocort and the 2 normal antibiotics they treat inflammation with: cipro & flax. 
she had a BAD reaction to the Pentasa so she got off that; and was only on 6MP for a few weeks and was throwing up for days; so had to go off that.
Remicade was the next discussion for us too.  Now as you probalby have figured out just about every single one is different with this disease; depending on when it was diagnosed to how severe it is.   we did the whole round of Entorcort from FEb to tapering off.. and being off it totally by October.  The antibiotics; she was on for about 8 - 10 weeks I believe.  Now she is totally off any prescribed meds.  from the 1st month I started giving her Omega 3's; an excellent multi vitamin; granular mixed w/water for good absorption; OPC 3 (Marketamerica supplement) and Boswellia (Standard Process). I am happy to say that right now she is doing great.
I am only telling you this b/c there are automatic ways the doctors like to treat Crohn's. If my daughter never had a reaction to the Pentasa and 6MP; she would be on that even now.. and we would be thinking those maintenance drugs are working.  but she is doing good right now without them.  we are constantly knocking on wood when we say that.

Just do your research; you have to be your daughter's advocate.  Watch what she eats and keep the food diary.  

If remicade ends up being the answer for her; then I always am thankful we have these drugs now to help us.  
this forum was my saving grace esp the 1st few months.  
You know you are not alone
I hope you can enjoy your holiday season and I wish we all have a better 2012
K


----------



## Tesscorm

Hi K's mom,

I, too, am sorry that your daughter is suffering with Crohns.  My son was diagnosed in May, he was 16 (17 now).  

Just thought I would share our experience in treating Crohns.  At the time of diagnosis, my son was given antibiotics by IV (I believe Flagyl as he'd previously reacted to Cipro) and then started on an enteral nutrition therapy.  For six weeks, he was allowed no food (with exceptions of broth, jello, clear fluids/juices), he ingested the formula overnight through an NG tube (there are drinkable versions of the formula).  After the six weeks, he reintroduced all foods over the course of approx. 3 weeks.  He continues with the enteral nutrition on a maintenance treatment - 1/2 dose, 5 nights per week.  Other than Nexium (antacid) he has not taken any other medications.

His most recent MRE showed most inflammation is gone (some mild inflammation remains in his TI) and he has had only some random symptoms (which have either resolved on their own or with simple home treatments, i.e. prune juice for constipation).

It's not an easy treatment for the initial six weeks, however, the success rate at inducing remission is comparable to steroids.  Unfortunately, it is not as successful at maintaining long term remission as are other medications.  But, while it works, it has no side effects and is supplementing his nutritional needs.

If you'd like more info, you can find a thread called Enteral nutrition in the Parents of Kids w/IBD subforum and there is another subforum in the Treatment section.

I hope your daughter is feeling better soon and throughout the holidays!


----------



## DustyKat

Worry, worry, worry, worry...

Well it is the start of the academic year here and Sarah has hit the ground running. Work all last week, political conference over the weekend and now back to classes and full time study. She is in her third year now, boy where did that go! 

Well the appetite, or lack thereof, and weight loss has reared its ugly head again,  . She acknowledges she is stressed and of course I go into worry overdrive at the fear it will bring on a flare! :eek2: She says she hasn't lost much weight but even so doesn't wish to lose more and the thought of it just stirs her up more. 

You know, I love her fierce drive and independence and I know full well without it she wouldn't be where she is now, but sometimes, just sometimes I wish she would pull back and take stock, (sigh). Of course any suggestion of that is met with..."I'll be fine." Well I won't be! :lol: I will just continue to rock in the corner and worry, worry, worry, worry! 

God I hate this disease, I think I may have recently reminded you all of that! :lol: 

Thanks guys, just needed to get that off my chest. 

Dusty. :heart:


----------



## M2M

Oh DustyKat.. you are one of the strongest Mom's I see on this forum.. Worry is our middle name..  but you hang in there.. and know you have the support of all of us other mom's!  I get that from my daughter alot too "I will be fine"..  haha! I guess we can be as supportive as we can.. and be there when they need our hugs..


----------



## Crohn's Mom

> "I'll be fine." Well I won't be!


Why o why don't these girls of ours understand this !! :rof::rof:

I remember (i think last year about this time ?) when she was on overdrive with classes, politics, AND trying to move and find an apartment.  She certainly is a go getter, and while that is so wonderful that she makes things happen for herself, it is just so hard to sit back and watch :eek2: 

Thankfully, Sarah seems to be very in tune with her own body and I don't believe she will "over do it" (well her idea of "over doing" anyhow!)

:ghug::ghug::ghug:
I know this worries you so much, but as always, we're all here for you as you are always here for us !
Try not to pluck out ALL of your eyelashes...maybe just a few of the bottom ones and you can cover that with a little eyeliner ! :lol::lol:


----------



## kimmidwife

Dusty kat,
I know it is hard not to worry after all that is what us moms are for. Sounds like she has good head on her shoulders though and hopefully will not overdo it.


----------



## Tesscorm

Oh Dusty 

I hate when Stephen says 'I know what I'm doing, I'll be fine, stop worrying'!!!   I've told him that if he actually did know what he was doing, he'd be making the right decisions (to REST), then I wouldn't worrying!  :ybatty: (Translation:  just do what your mother says!)

But, seriously, I know as moms we can't help but worry but from everything I've read, Sarah seems to be very mature and very much aware of how she's feeling.  I'm sure that she will take a rest if she's really feeling she's getting run down.  Is she coming home any time soon?  Or can you take a weekend to visit?  I'm sure you'll feel a bit better if you can just see her for yourself.

:heart: :Karl: :heart:


----------



## Dexky

Sarah did the same at the start of school last year if I recall.  She's right, she will be fine!   Go knit her a sweater and ease your mind!!


----------



## monkey

I love reading about how Mums feel . . . my Mum never tells me, she never tells me to rest or to back off, she just picks up the pieces when disaster strikes!
As a daughter tho, we definately do appreciate mums and know we can always go home for cuddles when we push ourselves too far!
Hurrah to all the AMAZING mums on here 
xxx


----------



## dannysmom

Dexky said:


> Sarah did the same at the start of school last year if I recall.  She's right, she will be fine!   Go knit her a sweater and ease your mind!!


Dusty - Thanks for always sharing your emotions and for all of your support. I do hope Sarah will "be fine".

Dex/Dusty - Your banter always makes me LOL. THANKS!!


----------



## DustyKat

Awwwww, thanks guys. :hug:

Sarah sent me a lovely note today saying she knows how much I worry about her and telling me really is fine.  Have I stopped worrying? Nah, but I am breathing a little easier. :wink: 

Oh and Tess, I will be seeing her in a couple weeks.  I will be going to Sydney for my Mum and Dad's 60th wedding anniversary. :kiss: Hmmmm, that's a milestone I'll never reach! :lol2:

Now on a side note, who is a fashionista? Well not me! more of a fashion tragic actually. :ylol: Well anyway, Sarah was saying to me how her favourite designer is Marc Jacobs and blah, blah, blah and then said she had just been reading Vogue and there was a feature article on him and it turns out he has UC. He spoke about how he was flaring in 2008 and they wanted to remove his colon. He went to a nutritionist and he changed his diet and started exercising and he was able to avoid the surgery. Since this is the path Sarah has been going down, plus him having IBD, means she is even more cuffed with him! :lol: 

Dusty. :heart:


----------



## Dexky

Yay Sarah!!

Is cuffed the same as chuffed??  Just wondering if I need to add an entry to my Australian to English dictionary?


----------



## DustyKat

No it's not! Because the bloody computer auto corrected! :ylol:


----------



## Crohn's Mom

So happy to hear that she at least attempted to reassure you! I'm sure she knows that's next to impossible to have you "not" worry! :rof:

I'm glad she's doing well ! :ghug::ghug:


----------



## Zoodles

I didn't want to start another thread- so forgive me for bumping an older one.  In our house Humira has been a blessing.  Weight gain- quality of life and no pain.  

It's time to renew our insurance authorization.  I'm the one with the upset stomach from dealing with the specialty pharmacy, doctor's office and insurance company :yfrown:  It really shouldn't be this difficult.

Just wanted to vent, everybody around me tells me not to worry.  But, I am worried.


----------



## Crohn's Mom

Hi Zoodles 
No worries on the bump ~ that's what this thread is for ! 

So sorry you're getting the run around with insurance 
You are right, it really shouldn't be difficult ! Like we parents don't have enough to worry about...
Hang in there ! 
big hugs


----------



## DustyKat

Hey Zoodles,

Wow! It is so fab to hear all is going so well! anda:anda:anda: 

Oh hun, I don't blame you for being worried, I would be too...:hug:...you don't need glitch system now! :eek2: I don't know how you guys do it, as T said...as if you don't already have enough to worry about. 

Sending you mega loads of luck that it is all plain sailing...:goodluck: 

Dusty. xxx


----------



## Zoodles

Three hours on the phone today trying to get the script approved.  I can call Abbott and get in their charity program quickly.  There must be some unwritten Three Stooges clause between the insurance company and the specialty pharmacy.  Frustrating but I'll deal with them to keep the medicine flowing.

I keep thinking there is a business for somebody who has the patience to deal with the run around.  I would be willing to pay somebody to get it all done.

Anyhow, things are good. I've made it to the acceptance stage of all the crohns being a part of our life.  Brendan is growing and feeling good.  We've had some bumps but nothing major.  Sending lucky vibes out to everyone else.


----------



## MicroByte

I can relate to everyone with insurance/pharmacy/Dr bill issues, it's the least of my worries, but it's such a pain to have to deal with in the mean time.  Not enough that we worry about our children, but have to also deal with all of the rules on things, ugh.


----------



## DustyKat

I don't think I will ever get use to the highs and lows I experience since I first heard that word Crohn's :voodoo: and how quickly I can switch between the two! 

Kids doing well = a high so high I am just about in orbit! :lol:

One mention of being unwell = me free falling to the depths of despair! Ugh! 

Sarah's migraines have returned for the first time in about 4 years. She had a moderate one last week and now a horrendous one this morning. I do think they are migraines and that alone but of course the evil thought outdoes the good thought and comes crashing to the fore because of course these were a symptom when she undiagnosed. Mind you, the tyranny of distance doesn't help. 
This is also her *bad* time of year, end of year exams approaching, but in the past it has been weight loss that was the problem so not sure if these headaches are related or not. 

I wonder if she will take my advice and go to the doctor? I'm not taking bets on that though, I'll likely lose! 

Worried Dusty. xxx


----------



## Farmwife

Sorry to hear about the migraines.
Has she ever been to a massage therapist?
Maybe if around some stressful advent she could have a couple massages to help lessen stress?


----------



## Tesscorm

:hug:  Thinking of you Dusty!!! :hug:  It is so hard to always have these worries ready to burst :ymad:  As you said, it is a difficult time of year, lots of stress, etc.   

I know she's not nearby but is she staying at your cousins' place (or another relative???) - thought I remembered reading that's where she'd moved to...  Maybe they can be your spies, oops meant 'eyes', for a bit! :lol:  Is she looking well? Eating well? 

:ghug:


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## poppets mum

I think worry medicine is called for. I prescribe a glass or two of wine and a good chocolate bar. :wink:


----------



## LilyRose

I'd definitely would go the chocolate!!

And I think everyone would agree - the ups and downs are the hardest thing. When things are going well, you are never sure how long it will last!

Your daughter sounds very sensible and no doubt she remembers what it is like to feel really unwell, so hopefully if she suspects something is not right she will get a check up. 

Take care of yourself - both because you deserve to look after yourself, but also because it models to your daughter that self-care is important.

take care,
LilyRose


----------



## Crohn's Mom

Oh goodness Dusty ~ I remember very well how you said that they diagnosed her with "abdominal migraines" pre-diagnosis ! argghhh ! :shifty-t:

Hopefully it is the stress of this time of year and nothing more. :rosette2:

xoxoxoxox
Don't go too far in to that corner ~ save your hair ! :ylol:


----------



## crohnsinct

As if migraines on their own aren't bad enough now th poor pumpkin I am sure is worried about what this might mean.  

I am praying that they are just migraines. 

I am with poppetsmom...I think this calls for some smore's!


----------



## DustyKat

Thanks guys...:hug:...you are the best!  

Well after much questioning I satisfied myself that it was a migraine and migraine only but I was concerned that it came so hard and fast after 4 years. As it turns out, after speaking with her and nutting things out, it coincided with the ceasing of a medication a week before. I won't go into the nitty gritty but suffice it to say it was needed to control hormones. :wink: 

And guess what!?!?! She did go to the doctors! :yfaint: but I think that had more to do with getting a certificate so she could get an extension on an assignment than anything else. Anyway, he felt that she was likely over the worst of it but should they continue she is to go back. Fingers toes and everything else crossed they have shot through like a Bondi tram! She is back to feeling 100% again and I am as happy as a pig in shit! 

See? Up and down like a honeymooner's nightie! :lol2:

Dusty.


----------



## Sascot

Glad she is doing ok - wow, off to the doctors on her own - you must have trained her well!!  I am dreading the day I have to leave it to my kiddies to get themselves there - maybe I can buy a house near both of them to make sure :hallo3:


----------



## Farmwife

Glad to hear the update.


----------



## poppets mum

:ylol2: good to hear all is well for now.


----------



## jmckinley

Glad to hear that things are well. OH, I feel for her. I have migraines from the same type meds. I don't take any of them for that reason. I am glad that you got it all straightened out!


----------



## DustyKat

Bumping! See? I stand by my threats Dutch. :lol: 

Now you all can see how quickly I react (worry) at the slightest provocation! :biggrin: 

Dusty.


----------



## Hope345

Good thread.  I am glad you brought it back to life. 
I worry about  WAY TOO MUCH some days.


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## DustyKat

Then welcome to the club Julie! :wink: 

You can check in anytime you like but you can never leave! :voodoo: :lol: 

Dusty. :heart:


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## Zoodles

I started putting money in a special jar whenever the Crohn's worries kicked in.  I have a never ending pot of money for Legos, wine and chocolate


----------



## vcp420

Great idea. I will soon have lots of extra cash. My son (dx at 15) is now off to college and doing well. Remicade has been amazing for him. He has made it through most of Freshman year asymptomatic. He is great about his diet and the almond flour cookies that he bakes are a big hit in the dorm. He even asked to take the yogurt maker back to school last time he was home. Of course no family's struggle with Crohn's has a happy ending. My 12 year old daughter has been having suspicious symptoms. She also has frequent migraines, often with abdominal complaints. Just yesterday she complained of cramps while running, the same complaint that led to her brother's diagnosis. No stool complaints for now. It won't take much more for me to bring her to GI for eval. I hate to worry her, but I don't want to delay diagnosis if that is the problem. At least she can look at her brother's life and see that it can be close to "normal", whatever that is. Remicade scares me to death, but it has made a huge difference. I don't relish the thought of possibly having two kids on it. I do yoga daily to help balance the highs and lows. I would give anything to have to deal with this for myself instead of for kids, but that is not the hand I was dealt. My son and I talked about some of the positive changes in our lives with his diagnosis when he was having to write college application essays and that was helpful to both of us. This forum is great for hearing someone's good story or relating to their bad story. I have a little bit of both to share for now.


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## Jmrogers4

Zoodles said:


> I started putting money in a special jar whenever the Crohn's worries kicked in.  I have a never ending pot of money for Legos, wine and chocolate


Great idea, I don't know if I have enough money to put in it though. It would probably consume my entire paycheck.

You can't even have normal worries because it all ties into Crohn's even the normal worries circle back to is this going to have an effect on his disease.


----------



## Henrietta78

So true that everything circles back to how will this affect IBD?

Currently concerened b/c fecal calprotectin is still high (mid 300's), and hemoglobin is low (11.3). GI doc prescribed vit D and iron (yuck).  Day after seeing GI doc he got a fever of 106(!!!) and was diagnosed with pneumonia.  Now, on amoxicillian, so I haven't added in the iron and vitamin D so I feel guilty about that, and I worry that the antibiotics will mess with him.


----------



## Jmrogers4

That is so rough Henrietta, seems like a lot of kids are dealing with pneumonia this year.  Hope he gets to feeling better soon.


----------



## my little penguin

Add me to the club...:tongue:

Currently having
Migraines again, stomach aches, nausea fatigue etc....:voodoo:
Remicade was working but now what ...:eek2:
I have a kid in tears upstairs now .:ybatty:


----------



## upsetmom

:ghug:..MLP i'm so sorry to hear that.


----------



## Farmwife

MLP, I'm soooooo sorry to hear this.
Whens his next appointment? When were labs done?
I'm sorry I might have missed all this.

HUGS


----------



## Niks

Am in this club too!

MLP, sorry to hear you guys are having problems too :yfrown:


----------



## Jmrogers4

Sorry MLP, that is no good.  Hope it all gets sorted out quickly.


----------



## Aniuko

Replying to the post as I need to belong to worried parents group. I am so constantly worrying...I am worrying (you see...) that when I start writing why bothers me, I would never stop...Today just one - worrying about both of my kids as we are probably moving to another country, so many unknowns, so many things to take of, so many good-buys, so many people to cheer up instead them cheering us up...oh my...

Ania


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## Aniuko

MLP, I am so sorry to hear that. I'll be thinking about you while worrying about my stuff too. Hugs.

Ania


----------



## vcp420

sorry to hear about the pneumonia. this won't help immediately, but have you read about Manuka honey? My son takes it daily and so far he hasn't seemed to catch any more colds or have any worse colds than his classmates. He caught the flu last April when about half of his high school had it and missed fewer days than his friends. it was recommended to me by a friend whose 2 sons have Crohn's also. It may not be doing anything, but you certainly couldn't talk my son into stopping it to find out. hope this helps.


----------



## Henrietta78

VCP420- how does he take the honey?  Certainly looks like it couldn't hurt to try it.


----------



## jmckinley

Sorry MLP that he is not feeling well. Hugs!!!

Worry Queen here too! When things bad..."oh no!"...when things are good..."what's coming?"


----------



## S mom

I am an amazing worrier too!  And Crohns drives me nuts 'cause every little thing that happens could be a possible complication... 

You know, it would be so much easier if Crohns just showed up as a crazy third arm that grew out of the belly and then we could look for it and say 'oh, there's that Crohns acting up again' or, when we didn't see it, we could say 'oh look, no Crohns going on here, things are fine, I can relax'.
But instead, we are always guessing and worrying, afraid that each little symptom is a problem.  

I wish I knew when I was over reacting and could 'chill' (as my son says!).


----------



## Tesscorm

MLP - just catching up here, I hope things are better today! :hug:

Another worrier here... :redface:


----------



## my little penguin

Skin on his feet peeling
Blood tinged mucus
No zofran today
I just need sleep


----------



## vcp420

henrietta 78- he takes a tablespoon each morning. he likes to spread it on some spelt flour bread and then sprinkle some ground flax seed on top. I take it also and like to mix the tablespoon in a serving of plain yogurt. it has a really smooth taste so it is easy to also have straight off the spoon. I get it from amazon, but it is also at whole foods.


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## Tesscorm

MLP - hope today's better! :hug:


----------



## Jmrogers4

S mom said:


> You know, it would be so much easier if Crohns just showed up as a crazy third arm that grew out of the belly and then we could look for it and say 'oh, there's that Crohns acting up again' or, when we didn't see it, we could say 'oh look, no Crohns going on here, things are fine, I can relax'.


Or like those stick on thermomentor that go from green to red.  Put one on the belly - green is good  Red - hospital   No more guessing/2nd guessing yourself.

MLP - Hope DS is feeling better today


----------



## my little penguin

So far so good but Rheumo spent a while on his hands ????
He sees Gi next week
Glad I don't work :lmao:


----------



## dawn89

Hi, I am new today to this forum, hope I am starting in the right place.  I have a 12 year old son with Colitis and Crohn's.  His troubles are mainly very low colon, lot's of inflammation right now.  We are trying Prednisone for the first time - day 3 and then we are to try Methotrexate.  He has been on Apriso, but it hasn't seemed to do much over the past year.  I have also requested the doctor to give him enemas.   He doesn't get a lot of tummy pain, just some bleeding.  I am excited to be on here!


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## Tesscorm

Welcome to the forum!  

I hope the pred works for him!!  You'll find lots of great parents here with tons of experience and knowledge to share, and always ready to offer their support. :ghug:

Feel free to ask questions about the meds; there are quite a few kids here who have used both pred and methotrexate.

Have a look through all the subforums - lots of info in the various sections.  

I'm sure there will be lots of other parents along to welcome you...


----------



## Jmrogers4

Welcome Dawn
My son was on methotrexate for a few months - worked fantastic for controlling his crohn's symptoms unfortunately he had a reaction to it and could no longer take it.  Jack also took Apriso along with Imuran.  I agree with you we did not see much of a difference with the Apriso and it was expensive.


----------



## Farmwife

Hi and welcome,
My girl is on pred and EEN. I'm glad you were able to find us (sorry for your son) and welcome aboard.


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## CarolinAlaska

Welcome Dawn!  You'll love it here.  I'm pretty new myself.


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## dawn89

Thanks to you all!  I don't understand why the doc wants to keep him on the Apriso, if he said it has done anything?? He had some slight inflammation up higher and a little gurd, but that is all healed.  He may think the Apriso healed that, but I think diet and supplements are more likely since the lower got so much worse.  Many have said the lowest part of the colon is hardest to heal and you have to use enemas.:duh:


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## Dexky

Welcome Dawn!  No experience with Apriso or Metho but just wanted to say hi!


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## Crohn's Mom

Hi Dawn and welcome ! :hug: 

My daughter tried Apriso as well, and it didn't help her a bit either.

Feel free to start your own thread here and tell your story so we can all get to know you better !!
Hope to "see" you around more


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## Hope345

worried again.
B seemed to be doing pretty well, but now she hasnt really pooed in 4-5 days so we started Miralax.  Nothing too much yet.  bloated.  she is irritable, find her in bed under covers, but always says she is fine.      I will give her a better laxative tomorrow if nothing happens...  it is always hard on  her body, but needs to happen.

It is *always* something.  I feel like the poor girl has not had one normal week since she was diagnosed last year in January.    
I am so hopeful starting Kefir next week will help her.   
*Have any of you had luck with milk kefir?*
thanks for letting me vent.


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## Jmrogers4

Poor B  Hope the miralax goes to work.  I always get the "fine" as well even though you know that it is not really


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## CarolinAlaska

Yeah, we have to dig here to get a report.  I keep a record of symptoms so every night I go through the "how many poops did you have today?  what was it like?  did you have any abdominal pain?  did you take your vitamin D?" etc.  My husband will comment in conversation about how well she's doing, and I'll be like, "no, I don't think she's in remission, she's still having abdominal pain, but it is good that her poops are formed now..."  We go to the doctor's for her weight checks and we try to describe to her how Jaedyn's doing and we argue.  Tim downplays her symptoms, but I think it is because he doesn't ask.  It used to be that she had a lot worse pain, but daily pain is daily pain, isn't it?  I'm just preparing myself that when we see the GI next week at 5 weeks into EEN she's going to say we need to do prednisone because she hasn't gotten well fast enough...  But maybe in one more week she'll be pain free.  After all we've only been on the NG tube and the peptide formula for the past 10 days now, so maybe by 2 weeks it will be a different story...  Okay, I'm rambling, but maybe someone can recognize my worried pattern of thought and make some sense out of it


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## Dexky

Hope, I've never heard of milk kefir?  What is it?

Carol, If the GI wanted pred to begin with, you know she'll use continued pain to push it after 5 weeks.  We've never done EN so I don't know what the expectation is there.  I understand your reluctance to start pred, I hope she gets better soon!!


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## dawn89

My son is on his 4th day of Prednisone 60mg, (he weighs 75lbs) he looks like he is addicted to an illegal drug. I am so worried, supposed to do this for 2 wks!  Why can't they lower the dose and use a steroid enema too???


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## Hope345

Dawn,
I am so sorry about your daughter.  There is a good chance the Prednisone  will stop all of his symptoms for a while.  It is also common for the GI to start other long term meds that will take longer to take effect at this time too.

If the symptoms return when tapering off of the Prednisone, then the enema/foam or cream could be started then.

thinking of you both

Carol, It sounds like she is doing really well on the tube feedings.  You are right that the pain does mean there is probably some inflammation still.  the GI might add in an antibiotic, put probably not Prednisone.   Maybe by then the pain will be gone.      

Keep us the great work mom and  Jaedyn  is such a trooper!! glad she is feeling better.


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## CarolinAlaska

Thanks Dex and Julie for the encouragement.    Overall I'm in a much better place emotionally than I was when we started the EEN and got the Crohn's diagnosis.


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## zab

Thank you for sharing your story here. I am new to the forum as of tonight. My son is 13 and was diagnosed in February 2012. His background is somewhat similar to your daughter's, with the exception that he continued to grow taller while his BMI dropped from 75th percentile to 1%. He had always been sick, and was on antibiotics constantly for years. We knew the GI was also an issue, but there was always something acute that seemed more important that needed to be addressed. (chronic debilitating sinus infections, adnoidectomy, tonsilectomy, sweat tests, Seizure tests,  apearance suddenly of "benign" bone tumors, school issues, ADHD. ) Months of living on ensure to gain weight ( before diagnosis)
Your daughter is very wise and brave to be able to discuss with you what her options are. I also sense you are an exptremely good avocate/parent for your child. My doctors in a major metropolitan area with all the resources available to them, have not moved half as fast as yours or offered nearly as many sensible options over the past year. It is very difficult to get them to return phone calls to discuss treatment.  
It took us 6 months to get my  son weaned off of Budesonide, (he was only on it fofr about 6 weekks initially but he had absolutely horrible side effects for him) this experience has left him extremely wary of making any changes to his regimin of Pentasa ( 1000mg 2x/day)and risling any other new drugs. 
  He is worse off now than he was a year ago. Tires very easily, has so much diffculty concentrating it is difficult to get him to do any school work. He is also at home, and is in bed 90% of the time. Counting a year in second grade he has likely missed almost 4 years of school at this point.  It has been a tough winter for us. He wants to do so the Specific Carbohydrate Diet and argues over going to the doctor. Having a preteen with crohns os no picnic. 
I am extremely grateful that he has such a resilient personality, tht his friends still coem over to play with him and are exited when he can last 5 minutes longer than he did last time when they play quick football scrimages in the back yard. Well just wanted to introduce myself. I am liz. my journey with sammy is not how I would have chosen it. the challenges are not ones I would wish for any child or parent. I am grateful to have found this group as I sort out what our next move is to help give him the strength he needs to be able heal so that he can get out and play wiht his friends and leave his room , and concentrate on school. Thanks for your strength and your story of pumpkin. I love that she colored the ENN tube bandage. That just says so much about her. She will bring so much strength from this forward in her life. I pray things will get easier for her and your family soon.  WIth you in spirit as I navigate this last bit of winter. ~liz


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## Dexky

Welcome Liz!  I think you should seek a new GI.  Sammy has too low a quality of life to spend another day without a solid treatment plan!  Good luck!


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## CarolinAlaska

zab said:


> Thank you for sharing your story here. I am new to the forum as of tonight. My son is 13 and was diagnosed in February 2012. His background is somewhat similar to your daughter's, with the exception that he continued to grow taller while his BMI dropped from 75th percentile to 1%. He had always been sick, and was on antibiotics constantly for years. We knew the GI was also an issue, but there was always something acute that seemed more important that needed to be addressed. (chronic debilitating sinus infections, adnoidectomy, tonsilectomy, sweat tests, Seizure tests,  apearance suddenly of "benign" bone tumors, school issues, ADHD. ) Months of living on ensure to gain weight ( before diagnosis)
> Your daughter is very wise and brave to be able to discuss with you what her options are. I also sense you are an exptremely good avocate/parent for your child. My doctors in a major metropolitan area with all the resources available to them, have not moved half as fast as yours or offered nearly as many sensible options over the past year. It is very difficult to get them to return phone calls to discuss treatment.
> It took us 6 months to get my  son weaned off of Budesonide, (he was only on it fofr about 6 weekks initially but he had absolutely horrible side effects for him) this experience has left him extremely wary of making any changes to his regimin of Pentasa ( 1000mg 2x/day)and risling any other new drugs.
> He is worse off now than he was a year ago. Tires very easily, has so much diffculty concentrating it is difficult to get him to do any school work. He is also at home, and is in bed 90% of the time. Counting a year in second grade he has likely missed almost 4 years of school at this point.  It has been a tough winter for us. He wants to do so the Specific Carbohydrate Diet and argues over going to the doctor. Having a preteen with crohns os no picnic.
> I am extremely grateful that he has such a resilient personality, tht his friends still coem over to play with him and are exited when he can last 5 minutes longer than he did last time when they play quick football scrimages in the back yard. Well just wanted to introduce myself. I am liz. my journey with sammy is not how I would have chosen it. the challenges are not ones I would wish for any child or parent. I am grateful to have found this group as I sort out what our next move is to help give him the strength he needs to be able heal so that he can get out and play wiht his friends and leave his room , and concentrate on school. Thanks for your strength and your story of pumpkin. I love that she colored the ENN tube bandage. That just says so much about her. She will bring so much strength from this forward in her life. I pray things will get easier for her and your family soon.  WIth you in spirit as I navigate this last bit of winter. ~liz


Hi Liz.  Thanks for your post.  I'm so glad Jae's blog was helpful and encouraging to you.  It is a rollercoaster life, and I find blogging about it helps me keep it all straight.  I think right now Jaedyn is at the best place she's been in years.  She's off her seizure meds without seizures, she is tolerating her new med without side effects (6 MP, only three doses so far), no diarrhea, no abdominal pain, cheerful, doing her schoolwork.  Of course I realize that her good times are usually cyclic, and don't last more than a week or two, but I'm hoping those cycles will get longer and longer until even her bad days are short and not much.  She is still having some joint pain with activity and isn't gaining as much weight as I'd hoped (yet gaining!)...  I do talk with her about what we want to do, because I need this to be something she wants.  Last fall she decided that she was sick of being sick and was willing to do whatever it takes to get better.  That led to a bunch of testing, a Crohn's diagnosis and now 7.5 weeks of complete enteric nutrition, but she is feeling better!  I'm hoping we're on our way out of this cave of darkness and disease!

Let me know if there is any way we can be of encouragement to you and your son.:hug:


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## my little penguin

Hugs ....
I agree you need a Gi and you need a good plan for your son 
Before the damage gets too bad that it can't be fixed.
Treatment should not be optional thing .
It is great to have your child's by in on things
But for a while longer they are still a child whose is getting sicker by the day.
I really hope a new Gi or second opinion can get your child to that good place.


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## ChampsMom

Hey Liz,

I also live in the DC Metropolitan area (Southern Maryland) and my son was diagnosed with Crohn's in April 2010 shortly after turning 13.  Sorry to hear about Sammy - Crohn's sucks.  

We have had a ton of good fortune with our doctors, so I thought I would share to see if you were being seen by the folks at Children's Hospital?  There are 2 doctors that we have seen from the get go - Dr. Wolfe and Dr. Sehgal (both females).  They have offices in a variety of places (pretty much any where there is a Children's Hospital Out Patient Center (Annapolis, Upper Marlboro, Laurel, Montgomery County).  

When Alex first became ill we spent a few days shy of 6 weeks in Children's Hospital.  After that he was on 1500 mgs of Pentasa per day, but continued to have some inflammation issues and they raised his pentasa to 3500 mgs per day - (knock on wood) since then he's been good.  We just had an appointment a week ago and everything is normal except his Vitamin D - so we are back on supplements.

Alex is on Home and Hospital through our County (you mentioned Sammy being home now - is the County coming into school him?).  I have found it to be the BEST medicine.  Zero stress = healthier, happier child.  We tried staying in school, but missing 1 to 3 days per week made his grades suffer and stressed him out.  So by the middle of 8th grade I pulled him and our pediatrician is great about keeping him home (as long as he's involved with other activities).  He's now a sophomore and it's been a blessing!  As a County Homeschooled child he can still participate in school activities (if he so desires), attends awards ceremonies, has played ice hockey for his HS team and will graduate with a HS diploma (which if I had pulled him to teach him myself, Maryland Law - Homeschoolers do not get HS diplomas unless they attend Maryland schools).  

Trying to think if there is anything else that might help... Keep posting questions and venting - the Forum is GREAT for both   And you and Sammy will be in my thoughts and prayers.

God bless..
 Shell


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## zab

Thank you Shell, Champs Mom,my little penguin,Carolin, &Dexky,
I know you are right about the doctor. I appreciate your input. I had a different doctor at Childrens Hospital and got waylaid with some other specialists (oncology, for bone tumors, and immunodeficiency, and infectious diseases dept. they passed us around so much and never offered anything conclusive since he had varying symptoms in so many areas. ( 2005-2007)When I tried to switch GI docs to one that would be near us (they had recently opened the Laurel office) They wouldn't let me switch. Been to Childrens hospital gargantuan mega center too many times and it now gives him such angst. I am headed to check out Johns Hopkins Med center in Balt. and Fredreick. Have some good leads on excellent PEds there. so hope to be setting up appointment today. My fear is that he has had such bad experience with the other drugs and the ones that are left seem to have potential for such bad side effects. At a seminar from Hopkins I went to last weekend a woman stood up to ask how often they see side effects with Humira. Her daughter was in the hospital for her neurological reaction which triggered a rare syndrome and she was now having to be treated for that which was worse than the Crohns has risk of death and is also now a lifelong issue. the speakers poo pood her a bit and said only a small percent of people have extreme reactions and that for many people it is a life changer and worth the small risk. 
I am in a bad place because, at this point , given my sons history of being in the 1% and having bad reactions to just about every drug he has tried,( for other things tooantibiotisc, shots etc) it is hard for me to (yet again) take the "partyLine" of oh this one is different this one works for most people" and risk that we would be in a situation (like his woman who spoke) of then being in a situation of treating lifelong neurological damage in addition to Crohns. As a parent, how could I ever face him if I told him i thought we should try Humira or Imuran  and he ended up worse off?
A bit worried that when I go to the doctor I will somehow get pressured into these drugs. My son would rather try the fecal transplant, ( not sure anyone does this for kids yet though, and certainly no one does it around here for anyone) and i am going to look into seeing if there are any Dr Shrader physicians in our area to do the LDA therapy which I read about on this site. I may opt to traveling with him for that treatment if it seems worthwhile. Anyone have any experience with this? Or other ideas. I know I do have to do something fast. He is not getting any better really on the Pentasa. 
Will keep you all posted. getting used to this site. So will figure out where the best place is to follow up with where we are. I so much appreciate your input and support.


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## dawn89

Hi, my son is 12 and we currently go to UMMC in Baltimore, but have an appt with Dr Laurie Conklin in Montgomery Co. which is also apart of Children's hospital in DC. He was on Apriso 1500mg a day and got much worse, so now ummc wants to start mtx. They never suggested increasing the Apriso(mesalamines). Maybe they didn't try increasing the dosage, because it didn't help at all, only got much worse?


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## ChampsMom

@ Dawn:  We met Dr. Conklin while inpatient at Children's she was great with us - but not our regular GI.  

@ Liz:  I too was (am) opposed to Humira and other like drugs because of the "possible" side effects.  My son was seen in oncology for 6 months due to inflammed lymph-nodes in his abdomin and my Dad had CLL (chronic lymphocyte leukemia) and it was just too much of a possibility for me.  However, I know there are folks on this site where Humira (mp3) was a life changing (positive) drug.  Though my son's doctor *really* wanted us to try it - I opposed and she didn't argue.  It was moreso a "Okay - we'll keep going, BUT IF what we are doing doesn't stablize him, then I need to consider other options, including tube feeding."   It was helpful that he bought into his recovery (he wanted to get back on the ice).  Has Sammy met any other kids with Crohn's?  Someone he can talk to about what he is going through?  I think that is a huge help.  Alex also goes to therapy weekly... just a thought (takes a wee bit of pressure off of you also if he has someone else to talk to about what he's going through and have them help him through the emotions...)

Shell


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## acc929

Hi everyone! I am not a mom yet, but I was a pediatric Crohn's patient (dx 2001, age 11). I'm 22 now. I just wanted to pop over and say that you guys are champions. Because I don't have children, I can't imagine what it must be like to worry so much about your child, but after my most recent hospitalization it really hit me how much my mom has done for me and how hard she works to take care of me when I'm sick. She is my rock and I would not manage my illness nearly half as well if I hadn't had her unwavering support. As much as we kids might not have gotten super lucky with our health, we certainly did with our parents. I gave mine quite a bit of grief when I was young and sick (still a pisser even when malnourished!), hopefully your tots are better behaved, but I just wanted to say that you're all amazing and strong and wonderful parents .


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## Marni's mom

acc929 said:


> Hi everyone! I am not a mom yet, but I was a pediatric Crohn's patient (dx 2001, age 11). I'm 22 now. I just wanted to pop over and say that you guys are champions. Because I don't have children, I can't imagine what it must be like to worry so much about your child, but after my most recent hospitalization it really hit me how much my mom has done for me and how hard she works to take care of me when I'm sick. She is my rock and I would not manage my illness nearly half as well if I hadn't had her unwavering support. As much as we kids might not have gotten super lucky with our health, we certainly did with our parents. I gave mine quite a bit of grief when I was young and sick (still a pisser even when malnourished!), hopefully your tots are better behaved, but I just wanted to say that you're all amazing and strong and wonderful parents .


ACC, thank you.  Your post made me cry.  If you ask the others here who know me, they'll know why.  I'm a raw nerve right now because my daughter, who is 10, is in a MAJOR flare.  The biggest one in the six years since she was dxed.  It IS hard to watch our kids suffer, and painful.  And, if we cuold, we'd take that pain away and endure it ourselves.  There's nothing worse than having your child look to you for help or relief, and not be able to give it.

And, to the rest of you....I FOUND YOU!  LOL   I didn't know about support groups til I noticed Carol has it listed under her avatar.


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## dawn89

Thx acc929


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## acc929

Sorry for making you cry marni's mom! My heart goes out to you and your daughter - 4 is so very young to be diagnosed! I hope she starts to feel better soon, you iron ladies will be in my thoughts!


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## rehopeh

Hey everyone, :sign0144:

Okay, so here's my worry:

Hubby's been diagnosed with Crohn's since 2008, when he was 18-19 years old. It's progressed to being a rather severe case of Crohn's today at 22 years old. I know that, generally speaking, IBD doesn't get easily diagnosed until the later teen years, but I'm really concerned about our son. He's only 1 1/2, but I'm so worried that he's gonna get his daddy's IBD. When I was pregnant with him, someone told me that IBDs are more readily passed down through the mother, and so (since I don't have an IBD) my kid would, more likely than not, be okay. I don't know if this person was just saying that to ease my worries though....

So, here's the question: When was your child diagnosed with IBD? Were there early warning signs? Does your child have a family history of IBD? Which side(s) of the family do they get it from?


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## dawn89

Feed him very healthy and organic! Lots if veggies and low grains and lots of low sugar Greek yogurt! Low sugar always!


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## rehopeh

Good thing he does love his veggies!! That, and I did breastfeed him until he was 11 months old. I've heard that breastfed children are less likely to become immuno-compromised. I hope so!


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## ChampsMom

When was your child diagnosed with IBD?  Age 13

Were there early warning signs? Not really.  He had situation when he went running for the bathroom at age 11 and didn't make it (explosive).  Nothing had happened before or after that gave us an indication there was an issue.

Does your child have a family history of IBD? None.

Some other info (I'm curious to read from others if you'll add it to your answers:

My son:

37 weeks gestational, natural birth - low birth weight 5'10", LOW water in delivery, and SHORT cord (only about 12 inches!).  Anyone else similar?


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## dawn89

When was your child diagnosed with IBD? Symptoms began at age 9 dx at 10
Were there early warning signs? Only a little blood in bm's
Does your child have a family history of IBD? None on either side
Which side(s) of the family do they get it from? 
Normal term and delivery - did get extra fluid in his tummy, but was pumped

Had a lot of antibiotics as a baby for ear infections and then again at age 8 and 9 for strep throat!


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## Jmrogers4

When was your child diagnosed with IBD? Symptoms began at age 9 dx at 10
Were there early warning signs? awful constipation as a baby, don't know if this was early warning or not, just prior to dx, fatigue, weight loss, lack of growth, anemia, constipation for a couple of days, then diarrhea
Does your child have a family history of IBD? Dad has Crohn's
Which side(s) of the family do they get it from?  - Not sure my side is lactose intolerant, dad is adopted so don't know of any family members besides him.
Normal term and delivery - 9.3 lbs, born on his due date.  He was induced. He was so big (and I was so tiny at the time) he was sitting on a nerve in my leg and it would cause my leg to go numb and I would topple over - not very safe


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## ChampsMom

Breastfed - 22 months. :/


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## Jenn

Seems a total crapshoot, rehopeh ... sorry, pun intended.... There is a genetic component - susceptibility - but there is also some environmental aspects and triggers. I think my son's Crohns was triggered from a strep infection. He was on antibiotics nearly constantly as a baby for ear infections and tonsilitis. I would use antibiotics sparingly, knowing your child's genetic history. And maybe be more strict about a healthy diet, we weren't. We had no one in the family, found out an adult first cousin of my husband was diagnosed just about a year before my son was. Also, stay on track with yearly pediatrician checkups to more closely monitor height/weight gain stays on the growth curve.

When was your child diagnosed with IBD? officially age 8, Sep 2010.
Were there early warning signs? No, but slow growth was missed, normal bathroom habits, non-healing abscess near bottom with surgery revealing fistula, led to GI and bloodwork and endoscopy/colonoscopy and dx. 
Does your child have a family history of IBD? Which side(s) of the family do they get it from? No, but apparently husband's side.
Alex was full-term, week-late, C-section


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## rehopeh

Thanks everyone, for all of your responses.  I think you're right, Jenn: it does seem like a complete crapshoot (lol).  Husband has Crohn's, in-laws have lactose intolerance. He was induced 3 days early, since both sides of our family has a history of birthing big babies, and he was no exception: 9lbs 10oz at birth. Normal, healthy pregnancy, no complications.  So far, we've only had occasion to use antibiotics once in his 1 1/2 years, for an ear infection he got.  But, we've tried to keep him on a healthy diet, sticking to organic as much as possible with our budget, and limiting the amounts of junk food and sweets he has.  We did have issues with him not gaining weight appropriately when he was about 6 months old, but he caught up quick once he turned 1.  He's now back to being my "Chubba Bubba", weighing about 35lbs at 1 1/2 years old 

So far, he seems pretty healthy and happy to me.  Some seasonal allergies, but other than that not much to really worry about.  I just wanted to have some idea of what to watch out for, if anything, in the future.


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## Maree.

Liam undiagnosed (seems like only time will tell if he has IBD but as it seems possible I'm trying to modify diet in ways that might help).

Full term breastfed <6 weeks -- he couldn't tolerate breast milk, flowed straight through him (12+ dirty nappies per day & not able to gain weight appropriately) 

Family history: Crohn's on my side family.  UC on my husbands.
Healthy between 1 & 10 but his weight starting dropping away from the percentile line it was tracking aged 6.  Now 10, no weight gain to speak of this year, despite growing 8 cm, plus has had symptoms on and off all year (severe stomach ache/ acid reflux / mouth ulcers).  

Personally I'd keep a close eye on how your son is tracking against his growth chart lines as from what I've read here it seems that not growing as normal rate seems to be an early indicator for many kids.


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## Hope345

Welcome to the forum and I am glad you have such great questions.

I highly recommend probiotics.  With yogurt, kefir milk or tablets.  This will always keep his good bacteria strong.   Do lots of research on this however, because even some of the good bacteria can take over too much and his body size would only need a small amount.        It is a strong theory that "bad" bacteria play a huge role in IBD and many other diseases.

Daughter diagnosed: age 13
First symptoms: Age 12
Was constipated as a baby, hardly ever used antibiotics.  
Family History:  cousin diagnosed with exact type of Crohns (Crohns colitis 20 years ago at her age)  Her dad and I have no stomach issues.  Some acid reflux runs on other side of family.

You probably already know not to ever give him ibuprofen, aspirin, aleve, or anyother anti inflammatory.

Keep his immune system strong.

I have read that the percentage of a child getting it with only one parent having IBD is VERY slim.

This is a great site for you and your husband to find info and support for his IBD.
Take care and best to your family.


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## Farmwife

Hi rehopeh,
Oh I love chubba bubba babies. Grace has so chunky, I could just eat her up, my son as beautiful as he was...was always and still is a bean pole. Grace at four weighs 40lbs and that took quite a journey to get her to gain that.
My Grace had constipation/belly pains/ reflux/joint pains/eye pains/rash since she was very young.
Hugs I hope your boy never faces this and I hope your hubby gets feeling better soon. You both look so darn cute in your avatar. I like seeing happy couples! HUGS


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## jmckinley

Welcome Liz. I am sorry your son is having such a hard time and I agree with Dexky, you might look for another GI. Your son's past sounds very familiar. I have a 15 yr old with Crohn's. Pre-dx he had ear infections, sinus, allergy, bronchitis, asthma, pneumonia,....always something! Tons of antibiotics as an infant and toddler. At 3 years old, his old school pediatrician told me that something was "weird" about his immune system, but he couldn't put a finger on it. He also said it would show up later in life... In hindsight, boy was I an idiot for not taking that seriously! Ryan has also gone up in height and down on the weight chart in the process.

It is so hard to watch our kids suffer with something, especially when it interferes with them having the life we envisioned for them. But it sounds like he has a great Mom and some friends that are really sticking by him in this. 

I hope that things are looking better soon. HUGS!!


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## Indy Paula

Hi all.  I just joined today and was reading everyone's stories about helping their children though this.  My A was diagnosed in Sept 2012 at age of 10.  Thankfully the doctors got it right the first time and didnt have to spend days on end in tests.  We go to Riley Hospital here in Indy and have one of the top GI doctors in the states.  She is also Lactose intollarent so that adds some issues when figuring out what she could eat at first.  She started out on the Prednisone for 3 months and got added the 6MP at 50 MGs then started Remicade in November just before Thanksgiving.  After the initial infusions she was to go every 8 weeks,  but after the fifth week started to get symptoms again so they adjusted us to every 6 weeks for the Remicade.  Now they have adjusted her 6MP from 50mgs to 75mgs per day.  It seems that the medicines are not staying in her system like they want but the drugs are working.  She still has some of the Prednisone weight on her and finding ways to get that off with the increased meds is challenging since her metabolism has increased so has her appetite.  Any suggestions on how to help with that i am open to.  She does eat healthy but our schedules just dont make for a normal workout routine with her.


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## Penny123

Hi!  I am new to this.  I am frustrated because my 14 year old has been having left upper abdominal pain on and off.  She also has sensitivity to smell...especially to a child with strong body odor.  She says she starts to gag when she has to sit near her.  Does anyone else have sensitivity to smells and upper left abdominal pain?  I always hear of


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## Mylittlesunshine

Hi rehopeh
My Lucy is 3 and was only recent diagnoised
With crohns.
She had early signs of tummy pain, diarrhea, weight loss
From a early age.
Lucy only weighs 11kg
I hope your hubby feels better.


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## Indy Paula

Hi Penny.  My A does gag when she smells something new.  This started with her symptoms.  She just trys to get away from it asap but sometimes that doesnt happen and she spits up.  We try to make sure that we enter a mall at a main entrance instead of a store entrance where the perfumes set her off.  If she cant get away from the person try to see if she can carry something small that she likes the smell of, my daughter likes ground coffee, and have her sniff it to help.


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## Penny123

Thanks!  I really hadn't thought of carrying around something that smells to cover it up.  I will let tell her to try to use gum or get something else like lotion or some perfume to use.


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## CarolinAlaska

When was your child diagnosed with IBD? 1-13 (age 13)
Were there early warning signs? Failure to thrive as a toddler after a bad case of Rotavirus, never recovered.  Diarrhea most of her childhood, that was controled with a gluten-free diet for the most part (not Celiac)
Does your child have a family history of IBD? None on either side, but my side of family has a problem with gluten tolerance and other GI issues.
Which side(s) of the family do they get it from? N/A
Normal term and delivery.
Had several rounds of antibiotics as a baby for sinus infection (ended up being a foreign body lodged in her sinuses that she finally sneezed out!) and in preteen years had ongoing sore throats with swollen glands...


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## Penny123

Jennifer was actually diagnosed at age 7 but I know she had it for several years.  Really she had symptoms at age 3.  When she was at preschool she would have diarrhea and have bowel movements 4 times a day.  The doctors always said she must lick her lips.  When she was born her face was real red with dry patches (ezema).  It wasn't until they started 6 MP that it finally cleared up just like the doctor said it would.  She had tried allergy shots at age 5 or 6 but she seemed to get worse.  Our pediatrician said he always trust a mom's intuition so we stopped them and she did get better.  Delivery was normal.  My sister has ulcerative colitis but the genetic mutation which is also found to have bowel issues is from my husband.  Jennifer had numerous ear infections as a child and had been on numerous antibiotics with ear tubes placed. 

Sorry have to pick up a daughter.  will catch you later.


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## Kristy5959

My 9 year old has only been diagnosed for a little over a month. We have been doing weekly shots of methotrexate and prednisone pills daily. It worked for 2 weeks, now he is losing weight again and his joint pain is back. The Dr. wants to discuss Remicade...any advice on questions I should be asking the Dr? Or advice on how to deal with this new treatment?


----------



## CarolinAlaska

Remicade is a territory I haven't had to travel.  Sorry your son is not doing as well as hoped.


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## dawn89

Kristy5959 - How long is your son been on MTX?  I know it takes a few weeks to building up in his system.  My son is on his 3rd week and not helping yet, at all.  He is also tapering Prednisone.


----------



## Kristy5959

dawn89 said:


> Kristy5959 - How long is your son been on MTX?  I know it takes a few weeks to building up in his system.  My son is on his 3rd week and not helping yet, at all.  He is also tapering Prednisone.


He has been on it for 5 weeks. He started his Prednisone taper and when we were on 5mg every other day is when the symptoms came back. So we went back up to 10 mg every day. Been doing that for a week and it is not getting any better


----------



## dawn89

So sorry Kristy, I totally understand.  My son is down to 30mg, was down to 25, having alot of bleeding (he started at 60mg this time).  We are starting Vancomycin tonight, which worked last year beautifully - it's for gi bacteria. He can take it for 3 weeks, giving the mtx time to kick in.


----------



## Kristy5959

dawn89 said:


> So sorry Kristy, I totally understand.  My son is down to 30mg, was down to 25, having alot of bleeding (he started at 60mg this time).  We are starting Vancomycin tonight, which worked last year beautifully - it's for gi bacteria. He can take it for 3 weeks, giving the mtx time to kick in.


Good to know. I am sure the Dr. will give us a few options...I just know Remicade will be one of them. Just trying to know what are the right questions to ask before starting something new.


----------



## dawn89

I would ask if that is long enough for the mtx to fully do it's job, maybe give it a few more weeks? Have you tried any diet changes?  My son wasn't as bad as he is now, before the Prednisone.  Like why use something that is impossible to get off of?


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## my little penguin

Most kids become steroid dependent - typically the younger the child at dx ( anything less than 15 is very young btw) the more severe the disease course.
IBD can also be very aggressive so you may have mild symptoms that you can "see" even though damage has been going on for a long time on the inside. Hence the suddenly doing worse.

As far as MTX. It can take from 6-12 weeks to become effective.
DS tried it last summer. Every time we tried to wean down the pred things got worse. WE also increased the dose - this didn't help.

He ended up starting remicade at the end of August.
Once started not problems weaning pred and I got my kid back.

Remicade does take time to work as well. but most see improvement after the third loading dose if not before.
It is given by IV. Your child will need a TB test. It does need to be done at an nfusion clinic.
DS had his at the children's hospital where his gi is located with lots of other kids.
He actually enjoyed his time there - movies, games tons of food and nurses getting him warm blankets.
SOme docs pretreat with antihistamine and steroids some only antihistamines.
There have been some studies that show staying on MTX and Remicade decrease the risk of building anitbodies to remicade. But sometimes the meds still stop working anyways without antibodies or the child reacts anyways.

DS had two minor reactions to remicade late int he game (infusion 6 and 7) .
So given that pre treating with steroids did not stop him from having a reaction the decision was made to stop the remicade and try humira.
Hypersensitivty can happen but it is rare. Once it does happen if steroids do not prevent it then the odds of it getting worse each time are good.

I will say remicade was the best thing that happened to DS - it is like he is not sick anymore most day.


----------



## my little penguin

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002580/

paper which may help you

look more at this link for more papers on remicade-
http://www.crohnsforum.com/showthread.php?t=43002


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## habbymomma

My son will have his second remicade infusion this week. He was diagnosed and had surgery in October 2012. Our GI recommended remicade as the best chance to stay in remission after surgery. We had to battle insurance though, because it is typically only approved for use w/ fistulizing Crohn's or when other meds do not help. It can't hurt to start the conversation about using it and get the ball rolling as far as insurance. It took us 5 months to get approval. 

Have heard from others that remicade has made a huge difference for them.

Best wishes!


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## Kristy5959

dawn89 said:


> I would ask if that is long enough for the mtx to fully do it's job, maybe give it a few more weeks? Have you tried any diet changes?  My son wasn't as bad as he is now, before the Prednisone.  Like why use something that is impossible to get off of?


We have done a tone of diet changes. But nothing seems to make any difference. Just this morning I tried to get him to drink Almond breeze milk and the smell of it made him throw up. He had already taken his meds...blah! The part I am worried about is that he is have blood in his stool about 6 times a day. He is losing weight and he can't go to school because he spends so much time in the bathroom. He is miserable all of the time. A 9 year old shouldn't act like this  I am just hoping we can find him (and me some relief.


----------



## Kristy5959

my little penguin said:


> Most kids become steroid dependent - typically the younger the child at dx ( anything less than 15 is very young btw) the more severe the disease course.
> IBD can also be very aggressive so you may have mild symptoms that you can "see" even though damage has been going on for a long time on the inside. Hence the suddenly doing worse.
> 
> As far as MTX. It can take from 6-12 weeks to become effective.
> DS tried it last summer. Every time we tried to wean down the pred things got worse. WE also increased the dose - this didn't help.
> 
> He ended up starting remicade at the end of August.
> Once started not problems weaning pred and I got my kid back.
> 
> Remicade does take time to work as well. but most see improvement after the third loading dose if not before.
> It is given by IV. Your child will need a TB test. It does need to be done at an nfusion clinic.
> DS had his at the children's hospital where his gi is located with lots of other kids.
> He actually enjoyed his time there - movies, games tons of food and nurses getting him warm blankets.
> SOme docs pretreat with antihistamine and steroids some only antihistamines.
> There have been some studies that show staying on MTX and Remicade decrease the risk of building anitbodies to remicade. But sometimes the meds still stop working anyways without antibodies or the child reacts anyways.
> 
> DS had two minor reactions to remicade late int he game (infusion 6 and 7) .
> So given that pre treating with steroids did not stop him from having a reaction the decision was made to stop the remicade and try humira.
> Hypersensitivty can happen but it is rare. Once it does happen if steroids do not prevent it then the odds of it getting worse each time are good.
> 
> I will say remicade was the best thing that happened to DS - it is like he is not sick anymore most day.


Thank you, this gave me some good insight and some things to ask the Dr. tomorrow


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## CarolinAlaska

Kristy5959 said:


> We have done a tone of diet changes. But nothing seems to make any difference. Just this morning I tried to get him to drink Almond breeze milk and the smell of it made him throw up. He had already taken his meds...blah! The part I am worried about is that he is have blood in his stool about 6 times a day. He is losing weight and he can't go to school because he spends so much time in the bathroom. He is miserable all of the time. A 9 year old shouldn't act like this  I am just hoping we can find him (and me some relief.


You are right.  A 9 year old shouldn't have to go through this.  I'm sorry you and he do have to go through this.  We totally understand.  Don't worry, you and your doctor will find a solution.


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## Camsmom

Hello Im knew to all this support group stuff but Im not sure who else to ask this question. I have a 12 yr old son who has been dealing with Crohns for about a yr now and Im glad to say that he is doing very well. He has always wanted to join the military, he talks about it all the time and in the past few days I have found out that he cant. Im hoping theres a parent out there that has some advice on how and when to brake this news to him. Should I tell him now or do I wait? I know hes going to crushed. Thank you to anyone that can help!


----------



## Maree.

Welcome Camsmom that must be really difficult.

I'm not a huge fan of delaying bad news however if I was in your shoes I think I'd want to go into the discussion armed with lots of ideas (and material for him to read and look at) about alternatives careers to help try to emphasis that there are still lots of great options available to him.  

If your school has a careers councillor perhaps they could help you come up with options that fit his interests and apptitudes.


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## Artisan105

The Remicade process usually takes 3-5 hours depending on the dose and how fast it is given. They will give him some Benedryal and Tylenol before the infusion. This will make him sleepy so make sure he is comfortable. If you notice any reactions like rashes, coughing, or restless leg or hands, make sure to inform the nurse about it. They will make a note of it to give to the doctor. Oh, after the infusion, the day of and the day after, he is not going to feel good. He is going to be bed ridden for a day or so. He is not trying to be lazy. He just feels like poo. 

Remember, Remicade is an auto-immune suppressant drug. This means infection from anything is high! Like pink-eye from someone at the hospital or at school. A cold or flu. Just make sure he washes his hands properly. Keep him away from other children or sick people until a day or so. Give his body time to recover. 

There is a lot of positive benefits from Remicade. If it doesn't help your son, ask your doctor for Humira. It is similar to Remicade but created out of human hemoglobin. But talk to the doctor about the negatives about Remicade also. Remicade is actually classified as a cancer treatment type of drug but it benefits Crohn's patients as well. There have been some instances of people developing cancer from it. Others get severe rashes. It all depends on the person. 

I tried every medicine out there for Crohn's. 6-mp, Metho, Imuran( Made me stop breathing!), now I am on Remicade. I been on it for 3 years now and it has worked wonders for me. My doctor is keeping Humira as a last resort trump card, so most doctors won't just use Humira first until they have tried other meds first. 

Just remember everyone is different. Not all medicine works for everyone. Keep a journal of your son's medicine- his reactions to them- good or bad. 

Oh what is really important is the meals you give your child. Make sure to go to the diet forum and read all the foods that help people/ harm people. Make a journal on what works for your son. Most processed foods are a no no. High acidic fruits like OJ is a no no. Raw vegetables typically are not good for us: Boil them or cook them. Milk is not good for us. Gluten is not good for us. No fast food. No take out food. No soda. etc. 

Ask your doctor if he can do a vitamin test. It shows what your body is lacking. Don't give your son just solid vitamin pills. Get the gel cap liquid ones. Get soft iron pills. Get flaxseed oil gel-caps. All of these things will help him out tons. Try to use sugar alternatives- like honey or agave. Normal sugar is not good for us nor does it absorb properly. 

I hope all of this helps you out. Praying for you.


----------



## Hope345

My daughter just received her 8th dose of Remicade, which was doubled the last two doses.   she has NOW had one month of no symptoms.  

I do believe the Remicade or whatever each parent/person decides to use to get this disease under control is an important step, for moderate to severe IBD.  Nothing else was working for our daughter, and we even have to do the Cortifoam each night still.  But now all is GREAT!!!

Each person is different as to how they respond to Remicade.  They will monitor your son very closely each treatment.  They will give him an antihistimine before the treatment starts and take his vitals every 15 minutes to make sure all is well.   Our daughter never had a reaction and the treatments have always gone very well.

As with any medication like this, you are doing it because it is what he needs right now to stop this disease.  With some people/kids they respond within the first-4th treatment, but we really didnt see a whole lot of change until recently.  

We were very nervous about starting this medication,

1.  Because of the possibility of not being able to fight off infections.   However, she has never been sick with a virus since we started her on it.

2. Because once you start, you dont want to stop unless you have a reaction.   Once you stop taking it, you can build up antibodies against it.

3.  Long term possible effects: cancer.      This one still bothers me.   But the percentage of people who get cancer is very small.

4.  Scar tissue.   Remicade can cause scar tissue where there is a lot of inflammation which often leads to surgery down the road.

None of these have happened to our daughter and she is doing great like I said.   
But like you, we had to make a decision on how to get her diesease under control quickly and long term use of Prednisone is not an option.

(you had mentioned earlier about your son being angry/aggressive, it is a side effect of Prednisone.)

I wish your son the very best and hope this is what helps to get his Crohns under control.          

I hope I didnt say too much, but I know your head is spinning trying to take in all the information.    You are doing so well and your son is so blessed to have you helping to make him better.


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## Mehita

I'm a worried mom. Worried I'm going to make the wrong decision and possibly not decide soon enough.

Lukas had his small bowel resection three months ago now. Prior MRE showed no Crohn's any where else except the stricture and his surgeon said he didn't see anything either during surgery. Since surgery Lukas has only been on Pentasa, which his GI says doesn't do much.

I've read the studies and know he should probably be on 6MP or, better yet post-surgery, Remicade. We are waiting until his June appt simply because I want to wait until school is out to work through any side effects. His TPMT test was in the intermediate range and I just have a gut feeling that 6MP isn't going to work for him. Absolutely no basis for that other than my gut! Completely rational, right? Ha!

As of right now, he's doing great and his last labs in February were the best they've ever been. His GI said if he continues to do great clinically and endoscopically we could just do nothing... but after everything he's been through, that really scares me. His GI is also very open to both 6MP or Remicade as well, but quite honestly, I'm not sure he knows which direction to go either. It's like we're waiting for something (presumably bad) to happen to point us in a direction.

So... I'm worried because I have no idea what to do re: maintenance meds. I know I need more info (labs, scopes) before I can truly make an educated guess on what to do next. Maybe that's my problem? When he was sick, I got used to labs being run every couple of weeks so I knew where we stood. Now? No clue. 

Isn't there a Crohn's manual or something??? I so wish there was! I'm also bummed that we're not enjoying and appreciating remission right now because of the big ? in front of us.


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## Hope345

Mehita,

I am glad everything went so well with your sons surgery.  
It is good to enjoy life now.....            maybe he will not need medication.    At least smile and breath for a week or two and forget about Crohns.      As a mother, I know that is not possible... but you both deserve a break.

You are doing everything you can and he is blessed to have you.


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## CarolinAlaska

Breathe and enjoy your son,yes. But I'd also be giving 6MP a try.  I didn't push for it, but now Jae is not feeling as good as she might be in a couple more months...  It has had absolutely no side effects.  I would encourage you to get it started.  If you wait and your son does start developing symptoms, your option to do the 6MP will be forfeit as it takes to long to start working.  Anyway, it's easy for me to say now that I finally made the plunge and got it started...  wasn't easy to take that step though.


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## my little penguin

Yeah that ^^^^
Out of all things 6-mp is pretty mild and can keep thins at bay for most.
You wouldn't want to lose what you gained by surgery /removal.
Plus if he shows signs again then you will need at a minimum pred to keep things under control AGAIN until 6-mp starts to work ( 3-6 months)
Is there a reason for waiting???
DS had no real side effects . Just elevated ast alt numbers which the docs took care of but nothing he could "feel" that would stop him from doing anything.


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## my little penguin

I thought there was more than one study on 6-mp use reducing the need for a second surgery.
Google it


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## Dexky

Mehita said:


> Isn't there a Crohn's manual or something??? I so wish there was! I'm also bummed that we're not enjoying and appreciating remission right now because of the big ? in front of us.


I think you're reading it!  Well, not right this second but the rest of the forum  I'm sure you've seen Dusty's kids' success stories post-op with Imuran.  Sarah is 7ish years now in remission and Matt is going on two.  My son was on 6mp for over a year w/o side effects.  If it will work for him, I'd go for the 6mp.  Just a pill a day as opposed to visits to the hospital for the remi infusions.


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## Catherine

Also if 6mp works for him it would allow for easier travel than remicade.


----------



## Mehita

Hmmm...okay, thanks guys. If I call the GI and say we want to start 6MP, can someone tell me how this would play out? Would we need to go in for base labs before starting or would the Feb labs be good enough? Then labs weekly for a bit?

The reason we were waiting until June is 1) he is doing well right now (aside from a head cold) and 2) we're trying to avoid missing more school and tennis practice w/appts and labs. He gets pretty stressed when he misses school no matter how much I or his teachers tell him otherwise.

Would they start him on 6MP with this cold/virus going on? He sounds horrible but says he feels ok. Two BM's that were between 6 and 7 on the stool chart, presumably from the virus. 

Maybe I waited too long already...?


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## my little penguin

We took 6-mp through plenty of colds. Only fever was an issue.
Your tmpt level should be good from feb. just ask your Gi for their thouhhts
It really shouldn't add any new infections.
As for DS he caught the same number of colds etc ...
And he was in 2nd grade so exposure to yucky kid germs was high.


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## ChampsMom

Mehita said:


> Since surgery Lukas has only been on Pentasa, which his GI says doesn't do much.
> 
> As of right now, he's doing great and his last labs in February were the best they've ever been. His GI said if he continues to do great clinically and endoscopically we could just do nothing... but after everything he's been through, that really scares me. His GI is also very open to both 6MP or Remicade as well, but quite honestly, I'm not sure he knows which direction to go either. It's like we're waiting for something (presumably bad) to happen to point us in a direction.



Hey Mehita...

I'm a little bit at odds with the GIs statement that Pentasa doesn't do much.  My son has been on Pentasa since diagnoses and is doing *great*!  That was 3 years ago in March (side note -I can not believe it has been 3 years!!)

Anyhoo... At one point early on his GI was looking at his labs and though they were not high by any means, they were not "normal" and she said, we might want to consider a Level 2 med - 6MP.  I was opposed to go stronger at that time because his labs were not *bad* and I instead asked if we could up his Pentasa doseage - and she said yes we could try and see what happens.  He was clinically doing great hence he wasn't in any danger (I think that is really important to know - as there are some kids who are in DANGER if they don't move on immediately to a stronger med).  

You said your son is doing great... then why introduce a drug that he may not need yet?  My Mum has always taught us - not to borrow trouble where there is none...  

Talking to your GI is a great idea - but (and this is JUST me and my opinion!) I wouldn't want to give a med that may not be needed yet.

I hope that makes sense.  I read this and walked away and then felt prompted to respond.  

I pray he continues to do GREAT!


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## my little penguin

Shell-
 I think her GI was going by all the studies for crohn's - since in general most crohn's ( not UC) folks ( including kids) just don't get enough from the ASA meds when used alone.
Again not all as your child is evident but that was probably what they were basing that statement on.


----------



## my little penguin

http://books.google.com/books?id=hO...onepage&q=6-mp surgery resection rate&f=false


read above - that is why you want to add it

and this

http://www.practicalgastro.com/pdf/May11/CollinsArticle.pdf

this last one should really help you discuss with your go what to do-
It goes through risk factors etc....


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## Mehita

ChampsMom - Thanks for your input. I really do appreciate it! Believe me, it's crossed my mind to not rock the boat and my husband is currently in that camp. 

I don't think Pentasa is the best med for Lukas since he had a stricture that only got worse due to off and on inflammation over the course of a year while on it. While the stricture has been removed and he's doing better now, just having had the surgery puts him in a whole new ball game and after reading up on post-surgical maintenance meds (thanks to MLP & our GI) I think we need to do something. I just don't know what exactly. All I know is that we don't want to have surgery again for a good oh... 100 years or so. 

I think I've come to the conclusion that I need more info and that will be the MRE at 6 months post-op. For now, we just need to ride the high we're on... and I need to find a hobby that has nothing to do with Crohn's!


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## CarolinAlaska

So if you have had the pre-test, then after starting meds you do a lab at 2 weeks and then a month after that.  No sweat.


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## habbymomma

Mehita said:


> I'm a worried mom. Worried I'm going to make the wrong decision and possibly not decide soon enough.
> 
> Lukas had his small bowel resection three months ago now. Prior MRE showed no Crohn's any where else except the stricture and his surgeon said he didn't see anything either during surgery. Since surgery Lukas has only been on Pentasa, which his GI says doesn't do much.


Hi Mehita!

My son had a small bowel resection this past October. He has been symptom-free with good labs since then. But our GI showed us research showing that for kids who have had surgery, remicade is the best chance to keep them in remission. We battled insurance for five months until they finally agreed to cover it. Tomorrow he gets his second infusion. I know it is scary to think about giving them such powerful stuff, but I truly believe it is the best thing for him. Our GI is one of the best in the country and our Children's hospital is in the top 3, so I think we are getting good advice. 

I read this book when he was diagnosed in 10/12 and found it helpful: 

IBD self-management : the AGA guide to Crohn's disease and ulcerative colitis / Sunanda V. Kane

Best wishes!


----------



## DustyKat

Camsmom said:


> Hello Im knew to all this support group stuff but Im not sure who else to ask this question. I have a 12 yr old son who has been dealing with Crohns for about a yr now and Im glad to say that he is doing very well. He has always wanted to join the military, he talks about it all the time and in the past few days I have found out that he cant. Im hoping theres a parent out there that has some advice on how and when to brake this news to him. Should I tell him now or do I wait? I know hes going to crushed. Thank you to anyone that can help!


As hard as it is I would tell him now rather than have him continue to believe in a path in life that he can't take. I know he will be devastated, bless him, but he will push through it and find another passion...

My daughter also wanted to join the armed forces. I was unaware at the time of her starting university that this was her ultimate aim and she had chosen her course, psychology, with that in mind. Near the end of her first year she found out she was unable to join due to her Crohn's, she was absolutely heartbroken but she rallied round and changed her studies. I imagine that she has moments when she still wishes that she could follow her original dream but she has moved on and is happy with the choices she has made.  

Good luck Camsmom, you are in my thoughts. :ghug: 

Dusty. xxx


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## DustyKat

@Mehita: 

As Dexky has said, for us Imuran has worked very well. Both kids have been on since their ileal resections and have maintained remission. Sarah will be seven years on the 10th July and Matt was two years on the 7th April. 

Good luck hun, there surely is nothing harder than making these decisions on behalf of the ones we hold so very dear. :heart:

Dusty. xxx


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## Lisa

Done!!


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## Kristy5959

I am just throwing this out there for everyone to chime in on...how do you get your child to stick to any sort of IBD or Crohn's diet without making them feel left out? My 9 year old seems to go into the "oh poor me" mode every time one of the other kids eats something we have put on his no-no list. Any suggestions will be appreciated


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## ChampsMom

Hey Kristy,

I did a couple of things with that issue.

1)  For everything on his no-no list we went looking for some sort of substitution - and it was a bit of an adventure game.  First he had to decide, was it the taste or texture he missed.  

With pop-corn (which was a biggy) he said he missed the taste, but really missed the crunch (seemed like he was eating soft food *forever*!)  We tried the hull-less popcorn - but it wasn't the right texture.  After a few misses, he settled on Corn Pops (yep, the cereal!).  

With ice cream - we tried a few different kinds:  frozen yogurt, tofu ice cream, soy ice cream and lactose free ice cream.  He preferred the lactose free.

For nuts - he settled on honey-nut scooters (like cheerios).

For pizza - he pulls back the cheese and adds toppings.

Then we tried to turn things around to a positive.  

For example - because he can't eat 3 big meals (GI recommended him to eat small meals all day long so his body wasn't trying to digest large portions of food) he carrys a small cooler around *every-where-he-goes* (it's a laugh)... So he can eat anywhere!!  When he was attending public school he was the only kid who could eat during class (we knew there were kids in other classes with diabetes and other issues who were also permitted, but in his classes he was the only one). 

When we went to Disney World all we had to do was tell a Manager that he was on a restricted diet and they would make him anything he wanted and they'd make it especially for him 

Last thing (that I can think of right now anyways..) is initially I changed everyone's diet in the whole house by eliminating things that he couldn't eat... but as he adapted and became comfortable with his personal needs, we started adding more - I think he enjoys the fact that regardless of what I'm serving for dinner - he knows he'll have something he likes (laughs..).  And at the end of the day, regardless of what other people are eating, he knows what doesn't agree with him and what does - and the latter is better!  

Is your son going to Scout Camp this year?  If so - it is something to start thinking about - FOOD!!  

Good luck!


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## Hope345

What great ideas all of you have to help with diets.   We also changed the family diet for a while when our daughter was in a flare.

My concern now is that she is doing so well at this time, but her eating habits are awful.  She is 14 and we go round and around......it is literally every meal, every cup of tea, every food choice she is making has way too much sugar, way too many carbs, no vegetables.       I am trying to find an app that she can download that educates her as to what food groups she is missing each day but cant find one yet that she can use on her Android.   anyone know of one?                            i know she will eventually understand how important all of this is, but I need to help her get a handle on it right now!!!                                          

taking helpful ideas for stubborn, hungry teens...


----------



## my little penguin

My fitness pal
Will calculate everything for either weight gain or loss or fitness .
Plus its free


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## Hope345

thanks MLP, I will have her try it tonight.


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## Mehita

We LOVE My Fitness Pal! We used it to track calorie intake and fiber when DS wasn't doing so well. He was able to see how many calories he was short or if he was close to getting too much fiber. The best part is the huge database of food that is already set up for you to choose from (even GF food). We printed reports for his GI so he could see calorie intake and that we really were trying to stick to the GF, low res, low fiber diet.

It's a wonderful app and is available for Android.


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## Hope345

I just told her about it, but my concern is not the calories but the type of food and that she gets a well balanced diet.   For instance, if she eats all carbs/sugars/fruits and no protein or veggies....      we will see if it fits.        If it does great, if not we will find one!!!      thanks again...  cant wait to see if it works for her.  At this age, it needs to be her idea and she has to put the effort into wanting to do it.


----------



## Kristy5959

ChampsMom said:


> Hey Kristy,
> 
> I did a couple of things with that issue.
> 
> 1)  For everything on his no-no list we went looking for some sort of substitution - and it was a bit of an adventure game.  First he had to decide, was it the taste or texture he missed.
> 
> With pop-corn (which was a biggy) he said he missed the taste, but really missed the crunch (seemed like he was eating soft food *forever*!)  We tried the hull-less popcorn - but it wasn't the right texture.  After a few misses, he settled on Corn Pops (yep, the cereal!).
> 
> With ice cream - we tried a few different kinds:  frozen yogurt, tofu ice cream, soy ice cream and lactose free ice cream.  He preferred the lactose free.
> 
> For nuts - he settled on honey-nut scooters (like cheerios).
> 
> For pizza - he pulls back the cheese and adds toppings.
> 
> Then we tried to turn things around to a positive.
> 
> For example - because he can't eat 3 big meals (GI recommended him to eat small meals all day long so his body wasn't trying to digest large portions of food) he carrys a small cooler around *every-where-he-goes* (it's a laugh)... So he can eat anywhere!!  When he was attending public school he was the only kid who could eat during class (we knew there were kids in other classes with diabetes and other issues who were also permitted, but in his classes he was the only one).
> 
> When we went to Disney World all we had to do was tell a Manager that he was on a restricted diet and they would make him anything he wanted and they'd make it especially for him
> 
> Last thing (that I can think of right now anyways..) is initially I changed everyone's diet in the whole house by eliminating things that he couldn't eat... but as he adapted and became comfortable with his personal needs, we started adding more - I think he enjoys the fact that regardless of what I'm serving for dinner - he knows he'll have something he likes (laughs..).  And at the end of the day, regardless of what other people are eating, he knows what doesn't agree with him and what does - and the latter is better!
> 
> Is your son going to Scout Camp this year?  If so - it is something to start thinking about - FOOD!!
> 
> Good luck!


So many great ideas..thank you. He is going to scout camp, but it is only day camp and they make them take their own lunches, so we are all good in that department. He just gets frustrated with not being able to eat the same things his friends do. I know this is the early stages for us, he has only been doing this for a little over a month. But at school he will grab a milk to drink because he just really wants it. We have milk on the no-no list. He said he only drank 2 swallows...but his tummy hurt afterwards haha. I think sooner or later he will learn it isn't worth the pain. But right now I am trying to find good encouraging ways to keep those no-no foods at bay.


----------



## my little penguin

CAn you pack his lunch at school for a while ( less tempting that way)
We let DS pick "fun things he likes that are safe as well as good things to go in his lunch.
IF other are having brand xyz of chip then I find some other bag he can eat.
the point being taking him shopping with you alot and he will help you find things he would be willing to try that also taste good.

What is he actively avoiding?

DS was free of corn, milk, eggs, soy, peanuts, tree nuts, fish, shellfish, oats, barley, rye, and wheat one point....not any more thank goodness
So if I can pack a lunch for him...anything is possible.


----------



## Kristy5959

my little penguin said:


> CAn you pack his lunch at school for a while ( less tempting that way)
> We let DS pick "fun things he likes that are safe as well as good things to go in his lunch.
> IF other are having brand xyz of chip then I find some other bag he can eat.
> the point being taking him shopping with you alot and he will help you find things he would be willing to try that also taste good.
> 
> What is he actively avoiding?
> 
> DS was free of corn, milk, eggs, soy, peanuts, tree nuts, fish, shellfish, oats, barley, rye, and wheat one point....not any more thank goodness
> So if I can pack a lunch for him...anything is possible.


That is part of the problem...we keep learning new trigger foods, seriously almost 1 every other day. I get so overwhelmed when we decide another food is causing a problem. I am not even sure where to start when deciding what he can and can't eat. We started a food journal, that worked great until he had a flare...then everything hurt his stomach. Any advice on how to officially decide if it goes on the no-no list?


----------



## ChampsMom

Kristy5959 said:


> That is part of the problem...we keep learning new trigger foods, seriously almost 1 every other day. I get so overwhelmed when we decide another food is causing a problem. I am not even sure where to start when deciding what he can and can't eat. We started a food journal, that worked great until he had a flare...then everything hurt his stomach. Any advice on how to officially decide if it goes on the no-no list?


What you are doing is spot-on - food journal!  There are some things that seem to show up on a ton of lists (but as always, what might be a no-no on one persons list is okay on anothers, sigh...)

Trial and error seems to be the best (worst) only? approach.  :confused2:

Good luck!


----------



## my little penguin

The other thing to keep in mind- until his inflammation is down- and he is done flaring- IT may be hard to pin point what is a truly a trigger food and what is "just" crohn's not under control.

remember most foods do not cause a flare but can make a flare seem worse.

We let ds lead the way on what he wanted to eat for the most part ( outside of nuts/raw veggies/seeds/popcorn)
for the most part he knew after a bit that food x made him feel worse.

but to know that he need to be feeling good first kwim.

I wouldnt eliminate any food at first just track for a few weeks then see if a pattern emerges- the results should be reproducible.


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## Dexky

my little penguin said:


> We let ds lead the way on what he wanted to eat for the most part ( outside of nuts/raw veggies/seeds/popcorn)
> for the most part he knew after a bit that food x made him feel worse.


Ditto!  It's amazing how quickly they tune-in to their bodies!


----------



## Mehita

I was up at 2:00 am last night wide awake with worry and crying. I feel like I'm prednisone right along with DS sometimes. All the worst case scenarios were just rolling through my head. What if the Aza doesn't work? What if he's one of the 4 in 10,000. Unlikely, yes, but there are four people in this world who, statistically, will be those four unlucky souls. Why did he flare so fast? What if GI #3 is no better than 1 & 2? Why DS? Why not me instead? Why is there not a cure yet? Are we going to make its through the school year? What if they say no to my 504 changes? Should I have let DS eat that slice of pizza? Or will he pay for it in a couple hours? What if Remicade and Humira don't work? Will he get his high school diploma from a hospital bed? 

And on, and on, and on. How do you turn it off? Someone please tell me I'm not the only one who has moments like this...?


----------



## Maree.

When I'm way too stressed I find nothing sooths my brain like repetitive movement.  Generally I'll knit or something like that, some how keeping my hands occupied, keeps my brain distracted enough from the whirling thoughts that I find them easier to handle.

I also find thought monitoring helpful.  In my pain CBT course we we're taught to write down all those damaging thoughts and beneath each of them write, "Is it realistic? / Is it helpful?"  Then write an alternative that better met those two criteria, which we'd then write out repeatedly.


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## Farmwife

No you not the only one!

My big thing is.....I can't believe I have the girl that can't eat. When did this happen? How did we get here?

For me like Maree I try to take my mind off of it. Whether by sewing or thinking about the following Sunday school lesson. Sometimes that works and sometimes it doesn't.
HUGS, we've all been there and I'm sure we'll make visits again.


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## xmdmom

I'm a worrier too and have found mindfulness to be very helpful.  I have also found it useful to try to distance myself from the worries, thinking "I notice I am worrying about..."  

[[[HUGS]]]


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## CarolinAlaska

I get that way whenever Jaedyn is in a flare or we have to make a decision on what changes to make.  Hang in there - it is the high drop of a roller coaster - scary, but you'll come through it all right.


----------



## Josephine

Crap drinking wine, need crying because what my genetic cause my daughter to ill.


----------



## DustyKat

Mehita said:


> I was up at 2:00 am last night wide awake with worry and crying. I feel like I'm prednisone right along with DS sometimes. All the worst case scenarios were just rolling through my head. What if the Aza doesn't work? What if he's one of the 4 in 10,000. Unlikely, yes, but there are four people in this world who, statistically, will be those four unlucky souls. Why did he flare so fast? What if GI #3 is no better than 1 & 2? Why DS? Why not me instead? Why is there not a cure yet? Are we going to make its through the school year? What if they say no to my 504 changes? Should I have let DS eat that slice of pizza? Or will he pay for it in a couple hours? What if Remicade and Humira don't work? Will he get his high school diploma from a hospital bed?
> 
> And on, and on, and on. How do you turn it off? Someone please tell me I'm not the only one who has moments like this...?


You are not the only by a looooooooooooooong shot Mehita. :hug::hug::hug: 

I have always found night time the hardest. The days are the time when you are busy and put up the brave front so your baby doesn't see the fear and uncertainty in your eyes. BUT come the night, when all is quiet and the darkness hides your face...that is when the front comes tumbling down. It can be a good thing Mehita, you need to release the anger, dread, frustration, ache and uncertainty, it helps to recharge the batteries and face the morning with renewed resolve when you see your dear son. 

Can this go night after night? no it can't and more often than not it doesn't so it doesn't become all consuming. I didn't have the night after night problem with Sarah but finding that I had two children with Crohn's was utterly devastating and I couldn't sleep. I couldn't function like that so what did I do? I took a sleeping tablet every now and then until I was over the worst of it. For me that was the only way I could switch off and be any use to anyone the next day. 

Dusty. :heart:


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## zab

Hi Mums & Dads, 
I just posted on the LDA support group, but wanted to repost here. Mainly because I am so extremely hopeful that LDA treatments we just started and LDN (medication we just started- new on the scene for kids as of Sept 2012-FAD approved and very few side effects!) will be making a difference for us here soon.  I will continue to let you know how things go, but wanted to get the word out fo these methods since so far for us  everything else we have tried ( incluing pentasa-adds to lethargy) has done more harm than good. For what its worth here is my long winded update.  Best to all you Moms and Dads out there. My heart is with you I hope this might be helpful to someone.  

 My son went to see our local LDA doc here in MD. Dr. Layton in Towson. He is so thorough and took his time with us. He had seen us back in 2008 but we thought we couldn't afford the treatments for (at the time) recurrent strep infections, severe ADHD, gluten sensitivity, allergies, and sensory integration issues. Now five years later after two surgeries(adnoid tonsil), colonoscopy, Crohns Dx, malnutrition, 2 years of not being able to attend school outside of home, and failed medication after failed medication we returned to seek help with him again. 
Hind sight is 20/20, but needless to say I wish we had not been so skittish about it not being FDA approved, costing $ and being slightly painful. We would have saved a ton of heartache, pain and money. 
He has only had his first round of treatment last week. We did 4 shots one for environment (mold trees, pollen, dust etc) one for chemicals and plastics, and medications and one for common food sensitivities, and one specifically for bacteria associated with Crohns.
The doctor warned him as he took blood samples that the LDA would be much more painful. He was totally honest and gained my sons trust. It was extremely painful esp. after just having blood taken but he has been sick for so long and was so brave. He held my hand, and when I told him to squeeze it hard if it hurt he said he didn't want to hurt me and he just closed his eyes hard. The next day he was tired and his arm still hurt a lot. But he is on board completely with the treatments which is huge! He is a teenager and had previously announced he would refuse to take the next level of meds after our horrible (HORRIBLE!) experience with steroids. 
I cant give a complete scientific cause and result effect here because he also started taking LDN the same week we started LDA. He has been pretty tired, but not more than his usual ( bed ridden for the most part) He has been engaging much more in conversation and family games and even went for a bike ride with his friends (the next day he regretted it though was wiped) 
Honestly I cant believe it has only been a week since he had the treatment. I am so encouraged. Though he has complained every day about how awful he feels, (unusual for him) and his appetite comes and goes, he seems more alert than I have seen him in a long time. He wants to start the specific Carbohydrate diet today (suggested to him by Dr Layton) He knows what it is like so he put it off for a week. So today I have to get organised and plan ahead for that. (Easy SCD ideas and snack thoughts welcome!) I find it hard to keep it diverse enough for him to want to stay on it. I usually get stuck on just serving meat, salad and nuts. He craves his potato chips, (but this is for another section of the support forum~I digress) 
Will keep you posted on his progress with LDA. Love our Doc! He is so amazing! Best bedside manner and he reads every report and really cares to do the right thing. He helped my son to see that he was settling for the life of an old man when he has his whole life ahead of him, and while he cant guarantee it he has helped so many he would be surprise if he didn't feel better after the treatments.His goal is to get him back to feeling good. The doc asked my son "when was the last time you remember having energy and feeling good?" His reply was that he remembered the feeling of running strong once when he was maybe 8.( more likely 6 I am thinking) My son doesn't even have much of in idea of what it feels like to feel good and the doc drove this point home to him so he would have incentive to get better and a baseline of reference for where he is now, and how he is feeling when he goes back for his next treatment in 2 months. His running memory will be a 9 on his scale with his current state will be the 3-4 marker. ( he said 4- Dr Layton & I both thought more like 3)
So, thats where we are just thought I would share a bit of our progress here. Yet again, hoping for the best. Cant tell you how many times that has stung me in the end, but here I am again. Fingers crossed, prayers good vibes and kind thoughts welcome.  oh and SCD hints too! Thanks for being out there and sharing your stories. Particularly Scottchopchop, yours inspired me to go back to our LDA doc. thanks. :] will try to keep you posted. 
~liz
__________________


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## ChampsMom

Zab - what is an LDA doctor?  Sorry, I'm not familiar with it or having a brain-cramp... either way, unsure.


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## Farmwife

Brain-cramp as well! LDA?????


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## Jmrogers4

Low dose antigne/allergy treatment.  Here is a paper explaining
http://cemmed.com/wp-content/uploads/2011/05/LDA-information.pdf or this one
http://drneubrander.com/blog/2011/10/what-is-low-dose-antigen-therapy-lda/
It is supposed to work in place of immunomodulators but I have not read much on it and don't really know a lot.


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## Kristy5959

Does anyone have any great tricks for helping with joint pain associated with Crohns? My 9 year old has had hip and knee pain before, the steroids helped...but we are off those now and hope not to need them again any time soon. Any suggestions will help


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## Jmrogers4

We've used heating pad, essential oils.  Even used sports wrap and wrapped up ankles and wrists when it got bad.
Sorry he is still having joint pain.  Have you seen a rheumo as well?  I know there are quite a few who regularly see them for joint pain.  We have not but if Jack starts having joint pain again we definitely will, I just never thought of it and had not found this site yet when he was really having issues with it.


----------



## ChampsMom

Hey Kristy, 

We treated my son's joint aches with ice, Tylenol (for pain) and for a solid year he took omega 3 supplements.  Hope that helps.  

Shell


----------



## Kristy5959

ChampsMom said:


> Hey Kristy,
> 
> We treated my son's joint aches with ice, Tylenol (for pain) and for a solid year he took omega 3 supplements.  Hope that helps.
> 
> Shell


How much omega 3? We have been doing the ice and Tylenol but never tried the omega 3. He weighs about 54 lbs, so I don't know how much to give him.


----------



## ChampsMom

Ugh... I wish I could remember.  I can tell you that we used the Nutrilite brand (my go to brand for all vitamins and supplements) and they have changed their joint supplement to Glucosamine 7 (based on what I read is better than just the omega 3s - but is *not *recommended for kids under the age of 12).  I would check with your local health store they tend to be knowledgeable about how much per weight.  IF he can eat salmon - you could also add that to his diet (loaded Omega 3s).  

I remember when Alex would get out of the car to walk into school and I thought, "He looks like an old man walking..."  I would bawl as soon as I got out of the parking lot - he was so stiff and just kept pushing through...  Sorry I'm not  more help 

I had him take a lot of supplements early on... At one point he was taking 23 pills a day and half of them were supplements.  Now he's down to 11 with only 4 supplements (daily, vitamin c, calcium w/magnesium and a flintstone - laughs).


----------



## Kristy5959

ChampsMom said:


> Ugh... I wish I could remember.  I can tell you that we used the Nutrilite brand (my go to brand for all vitamins and supplements) and they have changed their joint supplement to Glucosamine 7 (based on what I read is better than just the omega 3s - but is *not *recommended for kids under the age of 12).  I would check with your local health store they tend to be knowledgeable about how much per weight.  IF he can eat salmon - you could also add that to his diet (loaded Omega 3s).
> 
> I remember when Alex would get out of the car to walk into school and I thought, "He looks like an old man walking..."  I would bawl as soon as I got out of the parking lot - he was so stiff and just kept pushing through...  Sorry I'm not  more help
> 
> I had him take a lot of supplements early on... At one point he was taking 23 pills a day and half of them were supplements.  Now he's down to 11 with only 4 supplements (daily, vitamin c, calcium w/magnesium and a flintstone - laughs).


That is exactly how I feel, I see him try to walk up the stairs and it takes him forever. At church on Sunday someone said he looked like an old man walking...and the good sport he is, he started to talk like an old man and used a pen and pretended it was a walking stick  At least he tries to find the humor in all of this. I am going to ask his Dr. if there are some supplements he recommends. He is doing folic acid right now and 2 multi vitamins and that is all. Thanks for the advice


----------



## CarolinAlaska

Jaedyn uses lemongrass, geranium or other essential oils and has had good luck with them, but I don't think her joints were ever as bad as that.


----------



## Kimberly27

Reed likes tight, hot compression.  I've been thinking of trying Kinesio tape since it works so well for my sport injuries.  http://www.kinesiotaping.com/

Kimberly


----------



## Kristy5959

So my 9 year old has been off of steroids for a good month yet he is still having troubles sleeping. He is taking 6mg of melatonin about 30 minutes before bed time, but it doesn't seem to be helping. It's not like he is getting up in the middle of the night and using the bathroom...he just can't seem to sleep. It is not fun for anyone at our house. Have any ideas to help him???


----------



## kimmidwife

That is so hard. A few suggestions. Make sure he has no caffeinated beverages after 2pm if he drinks any. (We don't allow them at all but I know every family is different.) turn off tv and computer one hour prior to bed. Have him take a warm bath then a warm drink and then lie down with a book quietly for half an hour until lights out.


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## Mehita

Is he physically active in sports at all? On days that my son gets some exercise, he sleeps well. On days when he sits around watching TV all day are the times he can't fall asleep. Just a thought.


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## DustyKat

Once he is asleep does he stay asleep? 

If he does get off to sleep at what time is that? 

Dusty. xxx


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## Dexky

Did he have trouble sleeping before steroids?


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## Kristy5959

kimmidwife said:


> That is so hard. A few suggestions. Make sure he has no caffeinated beverages after 2pm if he drinks any. (We don't allow them at all but I know every family is different.) turn off tv and computer one hour prior to bed. Have him take a warm bath then a warm drink and then lie down with a book quietly for half an hour until lights out.


He isn't allowed to have any pop...the bubbles hurt his tummy. So that isn't part of the problem. He reads for 30 minutes before he actually is suppose to go to sleep. But the bath might be a good thing to try. About 2 hours after he is suppose to be asleep he gets out of bed crying saying he has just been laying there and can't sleep. He will get up 3-5 times during the night...it's almost like having an infant in the house :'(


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## Kristy5959

Mehita said:


> Is he physically active in sports at all? On days that my son gets some exercise, he sleeps well. On days when he sits around watching TV all day are the times he can't fall asleep. Just a thought.


This a good idea... now that it is summer and too hot to play outside he does spend a lot of time infront of the computer and tv. I am going to try to make him get some form of exercise in about 2 hours before bed time, and see if that helps. Thanks for the idea.


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## DanceMom

What about swimming? My girls are always exhausted after a day at the pool!


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## Kristy5959

DustyKat said:


> Once he is asleep does he stay asleep?
> 
> If he does get off to sleep at what time is that?
> 
> Dusty. xxx


His bed time is 8:00, but he reads for 30 minutes then is suppose to go to sleep at 8:30. He will get up on and off until midnight. Once he finally goes so sleep he stays there for a couple of hours then wakes up again and he says " I just lay there mom, I don't go back to sleep". He will get up 3-5 times a night.


----------



## Kristy5959

Dexky said:


> Did he have trouble sleeping before steroids?


He has always been a sleep walker...but when he first got sick he was waking up lots just to go to the bathroom. I sometimes wonder if it is a mental thing now, because he just wakes up and doesn't use the bathroom at all. The steroids seemed to make a mess of his sleeping patterns. I am just at a loss and I feel like I am being mean to him when I have no ideas other than "keep trying" "just close your eyes" "think of good fun things". I just want to help him and I don't know how.


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## Kristy5959

DanceMom said:


> What about swimming? My girls are always exhausted after a day at the pool!


I will have to give that one a try too. Thanks


----------



## Mehita

Also, when my kids can't sleep, I tell them just to stay in bed and read. I don't care if they read for hours. They're at least resting (and I'm sleeping!) and eventually they fall asleep at some point.

Is he tired during the day when he doesn't sleep well? Our GI was pretty concerned when DS wasn't sleeping well since that is the body's natural time to heal and recover.


----------



## Kristy5959

Mehita said:


> Also, when my kids can't sleep, I tell them just to stay in bed and read. I don't care if they read for hours. They're at least resting (and I'm sleeping!) and eventually they fall asleep at some point.
> 
> Is he tired during the day when he doesn't sleep well? Our GI was pretty concerned when DS wasn't sleeping well since that is the body's natural time to heal and recover.


He doesn't really act tired during the day...but then again he will sleep until 8:00 am. which will not work once school starts up again. I have been telling him to go ahead and turn his desk lamp on and just read, as long as he stays in bed. But we only started that rule this week and he still came to my room in the middle of the night at least 3 times this week. I am just wondering if this is something I should be calling his Dr. about or is it just another side effect of Crohns...we are still newbies at this.


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## DustyKat

Is pain still an issue for him? 

Is something worrying him? 

or both? 

I know with my son I have to ask very specific questions of him to get the answers I need.

Dusty. xxx


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## zab

My son has difficulty with sleep too. If you give a bath put Epsom salts in it, that really helps! and also pulls out excess toxins and adds magnesium to his system. I have been giving my son 200-400 mg of magnesium caps (Kirkmans) at night for several many, it helps with anxiety, (also helps with his constipation, but this may not be advantageous to you). There is a drink mix at the health food stores or online called "Kid Calm" which is primarily magnesium. It really helps if he is short on magnesium, or has any anxiety or difficulty unwinding. they also make "Mama Clam" which helps me when I get overly stressed, essentially the same formula different flavor. 
ALso you say you are giving him 6mg of melatonin, not sure if that has worked for him in the past, but i can tell you that my son has been taking 1mg for the past 5 years and within 30 minutes he is drowsy, However if he has 2mg or more he is wired and has difficulty going to sleep! Sort of like benadrill for some people too much can make them wired. 
So maybe try a small dose of magnesium after an Epsom salt bath and add some magnesium to his nightly regimen.  If I run out of either the magnesium or the melatonin he sometimes cant settle down. I use only "Source Naturals" melatonin as over the years i have found it consistently to work best for my son. when it is not hot out i give my kids a stuffed animal filled with flax seed that has been heated in the microwave for a couple of minutes, it gives them a toasty friend to hold onto and feel safe and cozy. Can be good for joint pain or stomach pain, like holding a little warm animal friend. We call ours heat up bunnies.  good for the spirits whenever extra care is needed. 
 I hope this helps. good luck. I remember how hard it was before I got this regimen down for my son, hours every night trying to get them to sleep can be really nerve wracking. all my best to you and yours. I hope this helps.


----------



## zab

The steroids seemed to make a mess of his sleeping patterns. I am just at a loss and I feel like I am being mean to him when I have no ideas other than "keep trying" "just close your eyes" "think of good fun things". I just want to help him and I don't know how.[/QUOTE]

I didnt see that he was on steroids before, we had a tough time coming off those. I recommend giving   "Drenamin" a try (an over the counter adrenal support supplement) recommended by our pediatrician and purchased online after we tried to wean off steroids with difficulties. My son was really having a tough time for six months after being on steroids only for a couple of months, once he was on the drenamin for awhile he returned to his old self.  he has stayed on it now, about 7 months. I leave him on it because he has low stamina and i think it helps him deal with stress, but it definitely helped with his adjustment off the steroids. 
Other ideas for what to do at bed time you probably already know, having a routine at bedtime can help induce sleep because the routine becomes associated with sleep and then helps to trigger it, so no matter what you decide try to make it the same routine as often as possible and be sure to avoid any screen time for at least 1 and half hours before attempting sleep( studies show this is how it takes your brain to change rythems after screen time)
My son loved to listen to books on tape or CD to fall asleep , we went through just about every one in the library.
  If he is still recovering, rubbing his back for a few minutes could help wind him down and be soothing, but then make sure you have a consistent exit time so you don't get stuck in there for hours maybe leave on some classical music that is the same every night and will help trigger the signal to sleep eventually. 
Can you tell i have been in your shoes before? hope it helps some.


----------



## zab

ChampsMom said:


> Zab - what is an LDA doctor?  Sorry, I'm not familiar with it or having a brain-cramp... either way, unsure.


Sorry i didnt see this question sooner. I think it was answered already, just wanted to say my son is now on his second LDA treatment.( our doc does one treatment every 2 months) he had 6 weeks of great improvement in his ability to get up and be more mobile before he got lethargic again.  The shots are very painful, but worth it, this last time my son was ready before I was to go to the doctors appointment! I usually have to track him down and beg him to go to other doctors. He doesn't mind going in for the LDA shots because they seem to be really helping him. They work to strengthen his bodies ability to cope with immune system malfunctions.   I am so grateful! 
He also started LDN (a new drug for crohns approved for kids in Sept 2012)at the same time,  So I dont know for sure which is helping more. they both have great track records and with LDN there are reports of actual healing of the gut, so I am really hoping for some good changes in a few more months. So far he is steadily improving after being pretty much bedridden for the last few years. its hard not to get too carried away hoping for a miracle but afraid to believe it.  i have been burned before so I am waiting, trying to wait patiently. Nine years of damage doesn't heal over night I am told.  and he is slowly improving. Able to do more and laughing and engaging with the family more. inch by inch. Healing takes time.


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## Kristy5959

zab said:


> Sorry i didnt see this question sooner. I think it was answered already, just wanted to say my son is now on his second LDA treatment.( our doc does one treatment every 2 months) he had 6 weeks of great improvement in his ability to get up and be more mobile before he got lethargic again.  The shots are very painful, but worth it, this last time my son was ready before I was to go to the doctors appointment! I usually have to track him down and beg him to go to other doctors. He doesn't mind going in for the LDA shots because they seem to be really helping him. They work to strengthen his bodies ability to cope with immune system malfunctions.   I am so grateful!
> He also started LDN (a new drug for crohns approved for kids in Sept 2012)at the same time,  So I dont know for sure which is helping more. they both have great track records and with LDN there are reports of actual healing of the gut, so I am really hoping for some good changes in a few more months. So far he is steadily improving after being pretty much bedridden for the last few years. its hard not to get too carried away hoping for a miracle but afraid to believe it.  i have been burned before so I am waiting, trying to wait patiently. Nine years of damage doesn't heal over night I am told.  and he is slowly improving. Able to do more and laughing and engaging with the family more. inch by inch. Healing takes time.


Thank you so much!!! I am going to give a few of these ideas a try. At this point I am willing to try anything. We have been on vacation and it is summer time so his sleep routine has not been really consisant...but this all gives me hope that we will all be able to sleep again...soon  Thanks again!


----------



## Dexky

Kristy5959 said:


> We have been on vacation and it is summer time so his sleep routine has not been really consisant.. Thanks again!


I think that may play into it quite a bit!  My kids are all up at odd hours in the summer.  They pay for it the first few days of school though


----------



## kerrbear1030

Help Please,
   My daughter is 14yrs old and she has been suffering since she was little with stomach pains, diarrhea, vomiting, sores in her mouth, joint pain, had trouble gaining wt, very tried. I have had her to a lot of drs who said it was either in her head, she was faking, or some children just have stomach pains. Her new pediatrician sent her to a GI dr who deals with crohns. She said that my daughter is showing sign of crohns. The dr ran blood test and it showed that my daughter does have an autoimmune disease. My daughter is going in the hospital tomorrow because she is now not able to go to the bathroom and we have tried everything. On thursday she will be having and colonospy  and they are sending down a capsule. She will be going to see a rheu dr in sept. Help I so scared and confused


----------



## Kimberly27

Kerrbear1030,

First of all, here is a virtual <<hug>>.

I'm so sorry for you and your daughter.  I hope the GI will lead you towards a resolution soon.  It sounds like the tests are on target, but maybe others can chime in on that.  I'm still pretty new to this also.

Regardless of whether or not this is Crohn's, the ambiguous days of not having a diagnosis are really scary for everyone.  I'm really glad you found this site because there are wonderful and kind people who are extremely knowledgable and will be able to answer some of the technical questions you will have.

You should start a new thread about your daughter under your name.  

Many kids who are diagnosed find good, working solutions with certain medications.  I know everyone is different, but try not to get too hung up on the extreme cases.  Take one day at a time.

Hugs.

Kimberly


----------



## Mehita

Kerrbear... Just breathe. You're on the right path now by seeing a GI. It's overwhelming and scary initially, but it gets better, especially once you get an official dx. 

Get copies of everything for yourself so you can look things up and ask questions here. 

Make sure they take biopsies w the colonoscopy. A pill cam is a good way to see what's going on in the small intestine.

I'd also ask them to test her for Celiac Disease. It has many of the same symptoms as Crohn's, yet easier to manage. 

Good luck Thursday and let us know how it goes. Feel free to start a new thread with all your questions an concerns. You'll get a better response with a new thread.


----------



## CarolinAlaska

Hi KerrBear.  It sounds like your daughter has a lot of symptoms our daughter had.  How is she doing?  What did the tests show?


----------



## Marni's mom

Kerrbear,
Welcome to the Forum.  This is a place where you will get a feeling of community among parents of children who are going through the same things yours has.  On any given day, when you come here, you will find someone going through the same thing you are and others who just came out of it.

It sounds like Crohn's for sure based on all of the symptoms you described, but of course, you won't know for certain until all the tests are run, and even then, maybe not right away.  It could be a long process, so get ready.  

On the other hand, it sounds like your daughter, and of course you, have been through hell already over the years based on what you described.  So, maybe this hospitalization will give you validation that this is NOT in her head, nor is she making it up despite what has been suggested by certain idiots along the way.  

As suggested by Kimberly, I believe, you should start a new thread in the "Parents of Kids with Crohn's" under your own name so we can follow your progress and offer you support along the way.  

I'd also like to suggest, if you haven't done it already, that you read other threads by parents to see what their experiences have been like.  I think it will give you a sense  that you are definitely NOT alone.

I wish you my best as you go through this process, and don't hesitate to advocate for your daughter as strongly and loudly as you need to if you feel like you're not being listened to or being disregarded.  We're here for you!

Stacey


----------



## Kristy5959

I am looking for members that might live in or around Salt Lake City, Utah. I have been trying to find some kind of support group for my 9 year old. I think it would really help if he could make friends with kids his own age that are dealing with the same Crohns issues he is. I feel like this forum has helped me to connect with a lot of parents that are going through the same things we are, and I want him to feel like he has that same kind of opportunity. I have looked all over and can't seem to find one. Any suggestions would be appreciated


----------



## Jmrogers4

Have you checked with the local CCFA?  His Ped GI office? I know we don't have a support group around here.  Jack often feels as if he is the only one in town.  We head your way a couple of times a year for skiing or Lagoon even though Jack is a bit older he would be happy to meet/have lunch or whatever.
A couple years ago they had an article in the paper about a local baseball pitcher at one of the high schools that was dealing with Crohn's and through some friends we were able to contact his coach who set up a lunch for them.  It was fantastic and even though the boy is now in college he will still occassionally check in with Jack to see how he is doing and it is great for Jack to see someone who is  a few years older playing ball and going to college and just enjoying life.


----------



## Kristy5959

Jmrogers4 said:


> Have you checked with the local CCFA?  His Ped GI office? I know we don't have a support group around here.  Jack often feels as if he is the only one in town.  We head your way a couple of times a year for skiing or Lagoon even though Jack is a bit older he would be happy to meet/have lunch or whatever.
> A couple years ago they had an article in the paper about a local baseball pitcher at one of the high schools that was dealing with Crohn's and through some friends we were able to contact his coach who set up a lunch for them.  It was fantastic and even though the boy is now in college he will still occassionally check in with Jack to see how he is doing and it is great for Jack to see someone who is  a few years older playing ball and going to college and just enjoying life.


 That is a good idea to talk to his GI dr. The only CCFA we seem to find is the national one...they really didn't seem to have anything local. I mean we have Primary Children's Medical Center here you would think there would be a huge need for something like this, but so far we haven't been able to find a group for him. Maybe we get to start one


----------



## DanceMom

Kristy, I would encourage you to contact someone local from the CCFA.  I recently signed up for the Take Steps Walk through CCFA and was immediately contacted by a local representative.  We've kept in contact through emails, phone calls, and even met one morning for coffee.  She's not only helped with our fundraising efforts, but also gave me information about local support groups and gatherings for kids with IBD (that were not on the CCFA website).  There are parents in our area that hold informal gatherings for the kids/families throughout the year in addition to the more formal groups.  Perhaps there is something like that in your area.  If not, someone from CCFA should be able to help you get a group started if you'd like to do so.  I've found them to be very friendly and helpful.


----------



## Kristy5959

DanceMom said:


> Kristy, I would encourage you to contact someone local from the CCFA.  I recently signed up for the Take Steps Walk through CCFA and was immediately contacted by a local representative.  We've kept in contact through emails, phone calls, and even met one morning for coffee.  She's not only helped with our fundraising efforts, but also gave me information about local support groups and gatherings for kids with IBD (that were not on the CCFA website).  There are parents in our area that hold informal gatherings for the kids/families throughout the year in addition to the more formal groups.  Perhaps there is something like that in your area.  If not, someone from CCFA should be able to help you get a group started if you'd like to do so.  I've found them to be very friendly and helpful.


Thank you I will do that


----------



## Tesscorm

Non-crohns related question (wasn't sure if I should post here or "Much ado" thread???) but wondering if anyone has any experience...  

My daughter often has really itchy skin (can happen anywhere - arms, legs, back, underarms, etc.) - sometimes there's a bit of a raised rough rash, other times there are little bumps (not rough, more like tiny hives), sometimes red patch, sometimes there's nothing but an itch. But, when she scratches, she literally ends up with rows of raised white welts (the welts almost look like hives but in 'rows' from her fingers).

A couple of years ago, we did find that stress seemed to trigger itchiness (ie she gets itchy all over when studying for a tough exam) - doctor once told her it's an allergic reaction to stress. But, it's been happening more frequently lately with no real stress and at random times, ie sitting at dinner last night her thighs got itchy. Also, happens at home or out.

She's used benedryl anti-itch cream and it helps sometimes, not always. If she ignores it (but it is really bothersome!), the itchiness eventually goes away.

I've told her to go to the doctor but, she's working now and doesn't want to take time off work (she has her annual in Oct so, if not before, will see Dr then).

Anyone have any ideas??? I know allergies can develop at any time so, could allergies have random episodes like this? And, would an allergic reaction just stop itching after a short time (ie 10-15 minutes) and then start up again in a different spot an hour or so later? And the raised welts from scratching are also really bizarre?? It's really odd to me and I don't know what to suggest to her...


----------



## Farmwife

YES!
I get them too. My mom says their from a weed outside but I always notice them when I'm overworked/stressed/sweeting.

My went away for a few years but now have come back with a vengeance.
I now take an allergy med with Cetirizine in it. It's a cheap over the counter med and doesn't cost a lot but works like a charm.


----------



## Tesscorm

When you say you get it when you're overworked/stressed/sweating, do you get it immediately? Or just at some time that 'day', ie overworked in the daytime but the itch comes in the evening?

Because I am thinking it is some sort of allergic reaction but its randomness in time and presentation is confusing me. :ywow:

Also, just to clarify, sometimes the itching is in multiple areas (her words 'I'm itchy all over')... :ybatty:


----------



## Farmwife

Tesscorm said:


> When you say you get it when you're overworked/stressed/sweating, do you get it immediately? Or just at some time that 'day', ie overworked in the daytime but the itch comes in the evening?
> 
> Because I am thinking it is some sort of allergic reaction but its randomness in time and presentation is confusing me. :ywow:
> 
> Also, just to clarify, sometimes the itching is in multiple areas (her words 'I'm itchy all over')... :ybatty:


Mine show up right away or latter.:tongue: Both I guess. The older I get the worse it has gotten. I remember being itchy a lot and not always having hives. 
Now it's at the same time. Since starting the med I don't get it at all.
Oh, my hives seem to leave during winter BUT might show up once or twice in the winter months. Confused yet??? Welcome to allergies!:ybatty:


----------



## CarolinAlaska

It may be urticaria, or just stress.  I think certirizine (generic Zyrtec) is a great place to start.  Hydroxyzine would be good for night-time relief, but it makes one tired...


----------



## Tesscorm

Thanks CarolinAlaska!   The welts from scratching really closely resemble images and descriptions of dermatographic urticaria.  And, from what I read, the first outbreak of urticaria can cause outbreaks in other parts of the body even if they haven't been directly touched or scratched.  Seems to fit in with the raised welts from scratching and the fact that they will disappear after a little bit but then another spot appears.

She hasn't seen her doctor but might be easier once school starts as her dr. is minutes away from her school.


----------



## upsetmom

Not IBD related.

Today l have been so stressed.

At 3am l got a call from my son saying that he'd smashed the car. 
When l got there l couldn't believe what l saw. 

Apparently a fox had run out in front of the car and instead of breaking he accelerated and tried to swerve. He hit a metal barrier and the car spun around. The car is a write off but luckily no one was hurt. 

I know it was an accident but l keep wondering was he speeding and what were they doing driving around when he was only supposed to be dropping off his friends after a night of watching soccer at our place.

I suppose l'll never know the truth.


----------



## Tesscorm

Thankfully no one was hurt!  But, poor you!  I can imagine how frightening it must have been!!  I always worry about my kids driving, whether it be their perceived invincibility or simply lack of experience.   I'm just glad he's okay!  :ghug:


----------



## DustyKat

Oh no upsetmom! What an awful scare for you! :ghug::ghug::ghug: 

Thank goodness everyone was okay.  Hopefully if he wasn't quite doing the right thing he will realise how lucky he was and learn from it. 

Thinking of you! :heart:
Dusty. xxx


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## upsetmom

And my daughter thinks she's going for her Learners Permit in 2 weeks..:yfaint:


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## DustyKat

Poor girl will probably never get her hours up now! :eek2: :lol: 

Poor mum! :ghug:

Dusty. xxx


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## Jmrogers4

Glad everyone is safe upsetmom. How scary.


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## Jessie's mom

I know first hand how scary a car accident is, I lost my 18 year old daughter to a car accident almost 5 years ago...glad your son is ok:hug:


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## upsetmom

Jessies's mom l'm so sorry to hear this...:ghug::ghug::ghug:


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## Jessie's mom

Thank you,miss her dearly...


----------



## Jessie's mom

Jessie went for her tb test today so I am assuming the remicade will begin sometime next two weeks..


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## DustyKat

Oh Jessie's mom, my heart goes out to you. :ghug::ghug::ghug: 

I hope all goes well for Jessie and Remicade works wonderfully well for her. :heart: 

Dusty. xxx


----------



## ChampsMom

So glad everyone is okay... We live in an area with lots of deer on the roads so it is something that is covered significantly in training classes...  Alex has not been anxious about driving and thus far I've been okay about it... but I know the day will come..

So, so glad he's okay and no one was hurt!  Cars can be replaced.

Jessie's Mom - I am so very sorry to hear about your loss...


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## Jessie's mom

Thank you for your warm thoughts miss her dearly....Jessie is scheduled for sept 10 for first dose fingers crossed


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## Jessie's mom

So Jessie stopped her mp6 med so she can start remicade on the 10th,with her colitis she doesn't go to the bathroom much,but has many ulcers,that's why they are trying the remicade.somdr took her off mp6,it has been almost 4weeks now and she was going to the bathroom more and more and today she started with diarrhea and I am so scared its gonna just get worse before Tuesday,any advice would be helpfull.


----------



## Patricia56

I'm sorry to hear she's feeling bad so quickly after stopping the 6-MP.

I suggest going to an exclusive liquid diet of Boost or Ensure and see if that helps calm things down for the next 5 days at least. You may need to keep her on that until the 2nd or 3rd Remicade treatment since it doesn't always kick in with the first treatment.

You should consult her doctor about this and I would be sure to let them know her symptoms are returning very rapidly. They may have some other advice for you like using Imodium. but you shouldn't use that without them telling you to do so.

I don't know how old she is but if she's fairly young or extremely malnourished you should keep an eye on the number of bouts of diarrhea she has in a day. You want to make sure she stays hydrated - drinks water (not juice or soda) and small amounts of gatorade-type drinks.

If she has 10+ bouts in a day (less if she's very young) I would call the GI or her primary care doctor as you may not be able to keep her hydrated at home with that number of BMs.

I hope the remicade works great and right away.


----------



## Jessie's mom

She is 17 but also has partial trisomy 16 which is a genetic condition that not much medical is known.for her she is mentally a 4-8year old and very small,she has a very high pain threshold which makes this worse the dr often tells me he can't believe she don't complain because of what he sees in her scopes which is the only way to monitor her,this whole thing just sucks


----------



## Jessie's mom

Well it did get worse we have been in hospital since Friday,fever high heart rate diarrheah ,vomiting this has been a awful week. Today finally doctor feels it is a bad flare and started her on steroids, once she is fever free we will proceed with the remicade .today she looks a bit better still receiving Iv  wont drink anything for me and has no control of bowels at all. Praying the fever don't come back she has been fever free for about 12 hrs now had one dose of steroids about 7 hrs ago.she has been lucky I guess since she has not have a flare since she first got ulcertive colitis in 2006. Hoping the remicade heals these ulcers because they seem to be more and more


----------



## Jessie's mom

Jessie is doing better only 4 BM today and last one was not in her pants,she had her first remicade tonite with no reactions,seems ok,hoping we get out of the hospital sooner then later.just wish her dr would come in and not resident doctors.i will for sure be having a chat at her next dr visit,this week has been horrible and felt he should of been here more than 2 times in 6 days..does anyone see effects of remicade in following days or are they just during infusions


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## CarolinAlaska

I'm glad she is improving.  I hope she continues to get better.  Sorry, we haven't done Remicade at this point.  If you post your own post on the Parents of Kids with IBD page, I am sure you'll get more traffic and more people with experience with that can pipe in.


----------



## Jo Ann

Alysa, my grand daughter, has had her 2nd infusion of Remicade.  She is also on her second full week of school.  Seems to be working for her at this time.  Hopefully this will be what others have talked about, and put her in remission for some time.  The medications she was taken have for the most part been taken away with just a few of them now that she still takes every day. I wish the best for all of you!  Just wanted to give an update!:ghug:


----------



## M2M

I am happy to hear shes doing good.  My daughter begins remicade on the 22nd.  We are praying it works good with minimal side affects.


----------



## Jo Ann

Keeping you and her in our prayers!  Remember it is the second dose that you need to watch.


----------



## M2M

Oh okay thats in November.. thanks


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## Hope345

Well, I am sad to say we are back.    With our daughter being in remission for 6 months, we were keeping busy and hoping all would be well.   I thought of all of you during that time and would look at the site from time to time and try to offer support to the many sufferers of this disease.

A few days ago, Crohns symtoms came back with a vengeance.      Our GI thinks that it could all go away in a month and that this is not uncommon.  A virus still can trigger an inflammation but go away soon with the Remicade treatments she continues to get.

I can feel myself locking up and getting worried, but hope to keep positive and know it will work out.


----------



## DustyKat

Hey Julie...:ghug:

I am so sorry to hear that your girl is not doing so well, bless her. :heart: 

How has she been getting on? 

In my thoughts. 

Dusty. xxx


----------



## holly and charlie

Hi there, I am so worried that my 9 month old has crohns... I have it myself and so does my mum...Anyway hes been having recurrent constipation and for the past 2 weeks been screaming at night in pain and very windy. He did a few months ago have blood in his poo on 3 occasions.

can anyone share their experiences or what symptoms to look out for on a baby xx


----------



## Farmwife

Hi holly and Charlie,
Welcome to the forum. Given your history and mom's I think getting in touch with a pead. GI would be wise. I'm not saying he's has Crohn's. My Grace is 4 and much like your guy has suffered since birth. Constipation, belly pains, vomiting and blood in the stool has been some of her symptoms. BUT there's other bowel problems that a baby can have.  A GI would be able to help figure out the mystery.

HUGS


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## Jo Ann

My Grand daughter has been doing extremely well with the remicade.  I just want to wish everyone a happy, healthy Holiday Season!


----------



## Farmwife

Thanks, great to hear.
Merry Christmas.


----------



## JulieB

Hi,
  I think this is the place I need to be.  My daughter Grace was diagnosed with Crohns a year ago and after Pred and Pentasa was doing well until a liver biopsy 2 weeks ago confirmed she has PSC/AIH (he's not 100% which at the moment but thinks its an overlap syndrome of the two).  The DR wants to start her on Imuran and another course of Pred.  When I asked how long he said the Imuran would be forever.  We haven't even told her yet because we know she will totally freak out.  Even a blood test sends her into a panic attack and ends with us chasing her around the room and holding her down. What a strange and unwanted journey for us all this is!  We are Australians living in Orlando, US if anyone knows of a support group here or who are the best Drs etc. I would be forever grateful.  Has anyone used Vancomycin therapy instead of Imuran with a positive outcome?
Thanks Julie


----------



## DanceMom

We use Nemours Hospital in Orlando. Love it there!


----------



## JulieB

Hi, Thanks for the info regarding Nemours.  We would love to use there as we've heard such great things but our insurance isn't covered there unfortunately.  They said they would be covered by UnitedHealth in the next two years so fingers crossed.  Hope your daughter is doing well.
Thanks
Julie


----------



## Hope345

We are headed to Montana Sunday to meet a new GI, have another colososcopy and MRE.  We will be starting the anti M.A.P treatment.      
I am  worried about the colonscopy because she will only have the "twilight meds" and I am worried because she is emotionally shutting down.   Being 15 is hard enough but she is almost giving up.          
I have come back to our Crohns Forum to ask for support but to also know the best way to support her right now.  I know i cant fix it all, I actually cant fix any of it, but she has all of my love and support.
thanks for listening


----------



## DustyKat

Hey Julie :ghug:

The twilight meds they use for scoping shouldn’t be a problem. For the vast majority of people they are more than sufficient to put you under enough that you have no memory of the procedure being done. 

It is such difficult age, bless her, not to mention the fact that the area the bowel is hardly the easiest area to talk about having issues with.  

Would your daughter be open to making contact with other teens with Crohn’s? 
Perhaps through the parents here, joining this or another forum herself, through CCFA, camps, Facebook, etc. 

Sarah went through a very difficult period at around 17. It was nigh impossible to speak with her about anything let alone Crohn’s. She was angry, fed up and rebellious. It did pass but at the time the only way I found to handle it was to just listen to her venting without interruption, hold her if she would let me and above all else tell her I loved her and would always be there whenever she needed me no matter what. I didn’t pretend to understand what she was going through but did validate what she was feeling. it wasn’t an easy time and I did ask that the school psychologist start seeing her. The school organised it and although Sarah would say to me it made no difference I saw that it did. 

Independent of the psychologist the GP was onto me big time about Sarah needing to speak to someone about her Crohn’s. I actually had a falling out with GP about it, I could well see where he was coming from but I knew Sarah better than he did and in our case I felt it was far better not to risk letting what lines of communication we still had open shut down. I made the decision that I would rather sacrifice the small stuff to ensure she would still come to me with the big stuff and it did work out that way thank goodness! Again that was our experience and may not work for others. 

I so hope all goes with the appointment and your daughter is soon feeling good about things again. :ghug: Safe travels and good luck! 

Dusty. xxx


----------



## Hope345

Dusty
You sre so thoughtful.    She will not reach out to others with crohns either.  but somehow one young lady reached out to her.  I am hoping it will be just what she needs.  so glad to hear a good story in regsrds to the twilight meds.  i read about it and almost called it off....     I hope you and your family are doing well. thank you so much.         Julie


----------



## Tesscorm

I can't add to the advice Dusty gave.   But just wanted to reassure you re the scopes - Stephen had his first scope with general anesthesia and his last scope with only 'twilight' - he was a bit nervous re the twilight but found that he had no problem at all - no pain, no memory, etc.  Good luck!


----------



## DustyKat

Twilight does have many advantages over a GA Julie, not the least of which is less risk and a significantly faster recovery time. I don’t know how things work in the US but here it is administered by an anaesthetist. 

Dusty. xxx


----------



## james's mum

Hi Hope345,
just wanted to find out what you knew about the Anti MAP treatment. We took our son to a doctor here in Sydney Australia and he wanted to start him on it. We decided against it at the time but I would be interested in finding out if it was the same procedures over in the states. Our son is 12 years old.

Hope everything went ok with your daughter.

James mum.


----------



## Goofychicken

Add me to the list.... We're doing ok right now and my worry level is probably at its lowest since she was diagnosed.. That said, I can't help but look at her like a ticking time bomb. I know she's going to flare again, and it bothers me not knowing how long the good times will last. Is it going to be tomorrow? A week from now? A year from now? Will she never flare again? (ha!). For the longest time, bedtime caused me a lot of anxiety. We'd spend half the evening listening for her to cry or wimper or get p to use the toilet. We have since bought another baby monitor (after getting rid of ours nearly two years ago!), and I find it gives me a LOT of peace of mind knowing that I don't have to discern between a shifting house, or DS getting up to pee or her crying or whatever.


----------



## DustyKat

Yeah, it’s hard not to wait for the other shoe to drop. Bloody Crohn’s! :voodoo: 

We are in a very blessed state indeed back here but I still feel like we are living on borrowed time. 

When Sarah was the only one diagnosed a lady told me about her sister’s story and it was identical to Sarah’s. Emergency surgery at 14 for an undiagnosed condition. Same area of the bowel too. As it is her sister is now in her 50’s and has never had a relapse! I grabbed hold of that hope and ran with it big time, hell I still do! But then…

My son was diagnosed. My kids mirror image each other with disease location and outcomes but I figure what are the chances of both my kids being as lucky as that lady? Suffice it to say I have visions of Lady Luck taking off down the road so fast that I can’t see her for the dust! :lol: 

Good to hear that the monitor is easing the nights a little for you, good idea mum. :thumleft: 

Dusty. xxx


----------



## Coneheadis

Hi. Our 12 year old daughter was diagnosed yesterday. Just trying to absorb what it means but I think I'll need you guys to help over the next while as we'll have a ton of questions and not many avenues to turn down. Thanks for being here!!


----------



## Emily's mom

Hi Coneheadis,

I'm sorry for the Crohn's diagnosis for your daughter. It is overwhelming, especially if you know very little about the disease like my husband and I. The Crohn's Forum has allowed me to gather a wealth of info from real people living with disease. My best advice is to do much research on your own and don't be afraid to get a second opinion.

Knowing where your daughter's disease is located and the severity will help determine a treatment approach. My daughter was diagnosied in March and she was seven years old. Her disease was located in multiple areas after much thought and discussion we decided to do Remicade. That is a biologic therapy which you go to a medical center and the medicine is infused through an IV. (Side note: Potential side effects will scare you.)Yesterday was her third round and so far she is doing wonderfully. We go back in eight weeks for her fourth infusion as well as a colonoscopy. The hope is that her body is responding and healing internally. 

My daughter got sick on Dec 21, 2013 with the type A flu and from there her health never improved. She had a fever every day for three months and our lives were turned upside down trying to find an explanation for her illness. Fast forward six moths later and she has improved greatly! She is back to " a normal active eight year old." I have no idea what we have in store for the future as this disease isn't curable, but for now life is pretty good! 

I wish your daughter all the best, stay encouraged, and take it one day at a time. 

Sincerly,
~J


----------



## kimmidwife

Hi Coneheadis,
Welcome to our forum. Sorry you had to find us but so glad you did. You should start a new thread introducing yourself and your daughter. I highly reccomend going over to the treatments section on the front page and looking at the different treatments used and getting familiar with them. That way you will be familiar with them when you speak to the doctor about options and what to expect. Keep us posted.
Kim


----------



## atlantisfreak

I am new here.  My 18 year old daughter has Crohn's and has been trying different treatments which have worked for awhile then stopped.  Her doctor is now going to put her on  Imuran and I am freaking out.  Possible side effects are blood cancer?  We seem to have no choice here.  When your child tells you "I don't want to die" what can I say.

The doctor says it is only a very small chance i.e. 1 in 30,000 and to my daughter I am trying to be positive.  Anybody have a positive experience with this drug who can reassure me.  I know they test the blood frequently and are closely  monitored.


----------



## Chester31

Hi, we are in a similar position. My son is 15 and was diagnosed just over a year ago. He's been managing ok with EN and penatasa but his bloods are still not quite as they should be. He is starting Azathioprine when we get back from holiday in a couple of weeks and I've had a few sleepless nights thinking about it. My son is finding it hard to accept that he needs to take anything more as he looks and feels well at the moment. We saw our IBD nurse a couple of weeks ago and she explained to him that it's a bit of a balancing act. Yes there are risks, such as pancreatitis and cancer, with Aza/Imuran but he will be closely monitored. If he doesn't take it then he's still at risk due to the ongoing inflammation which could possibly lead to bowel cancer in the future. There are many really helpful people on this forum who have experience with these drugs - I'm sure they'll be along soon.


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## Clash

The majority of kids here have been on one of the immunosuppressive meds, such as 6 MP, Imuran or Methotrexate. This risks are very small, the risks are much greater for fatal car accidents. Have you looked at the side effects for Tylenol? Seriously frightening but also very rare and no one mentions those.

My son has been on remicade and mtx. He has severe disease and it has progresses so now surgery is being discussed. I would give anything for remicade and/or mtx to have been his miracle drugs. Surgery is a hard pill to swallow especially since my son has no outward symptoms beyond the ability to gain weight. But the simmering inflammation left untreated or under treated can be extremely damaging and have serious implications such as bowel cancer in the future, which no one really talks about.


----------



## nani0126

Unfortunately imuran isnt working for my son but I have 2 friends who have beenon imuran for years and it works great for them I believe theyve been on it for years. Theyve had crohns for about 12 yrs and are doing great! My cousin has had it since she was 10 and is now 39. She goes through some troubles but lives a normal life. tell your daughter as soon as she finds a treatment that works well for her she can also live a pretty normal life. My son is newly diagnosed and also is scared of side effects. We all are. But the % is very low and the postives outway the negatives I think. My son starts remicade today. First one :/ im nervous about side effects also but trying whats necessary to see him as normal as possible again. Hugs♡ just take it one day at a time. Its all a learning process and takes time.


----------



## SupportiveMom

Atlantis - welcome to the forum. My daughter, 13, started Imuran 2 months ago. We have/or are on every drug available here for kids. Imuran was the only drug for Crohn's we hadn't tried and honestly chose it in hopes for a miracle to avoid surgery. I was worried a lot, & still am. I will say though out of all the drugs this is the only one that has given her some life back. Before Imuran she was going 10-15x a day, sometimes with blood. Since starting she is now 5-8x per day. The benefits for her are way outweighing the potential.


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## my little penguin

Ds was on 6-mp , Mtx , then remicade , then humira and now humira plus Mtx ( due to crohn's plus juvenike spodylarthritis).
6-mp numbers for risk are very low.
Things we do everyday that can kill us
Death risk for those under 14 in US
By car 1 in 250
By drowning 1 in 1000.
The list goes on and on 
We do these things because no one is pointing out the risk to you .
But it's still there and it improves quailty of life to do these things.
Remember docs recommend things where the benefits of the drugs outweigh the risks of taking them .
Getting to a place where things are mostly normal lets you focus less on the risks and more on life which is as it should be .
DS has stable crohn's due to humira nothing but biologics seemed to help him.
Risky yes but watching your kid not be able to play go to school etc...
Was not the life I wanted for him .

Big hugs but it will get better just realize the GI drugs take months to start working so its better to start them now .

Fwiw DS stopped 6-mp due to elevated liver enzymes .
They really do watch very closely .
Blood was drawn around 3 and gi was on the phone telling us to stop the med before 5.
Because the numbers tripled normal .


----------



## Jmrogers4

Welcome atlantisfreak, many have had great success with imuran. My hubby has been on it for about 13 years and had maintained remission. My son was on it for several years but in the end it just want strong enough but we had no side effects from it.


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## Ywiggan48

I wanted to post here because of my son who is 19 years old with very severe Crohn's disease as well as being disabled with cerebral palsy as well.  As his mum I have had Crohn's disease for 29 years no bother to me with no complications and no operations, however my son has now inherited the crohns far worse than me, he has a mass in his tummy 7cm, this has cause him to fistula, Remicade was started in Nov 2014, along with Azathioprine 25mg, he cannot have surgery as the mass is too compact and close to all vital organs, I have been advised that once the above treatments stop keeping him stable then the mass will bursts, hence death, his organs will be poison by the mass and toxins.  The whole situation is so sad, it's like living with an time bomb, am lucky that my team at homerton hospital in london all so good they have look after me for many years with a lot of success, they cannot understand why my crohns hasn't needed surgery they call me there miracle patient, but all that aside my son is on 19 it's just so worrying.


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## Farmwife

I'm so sorry to hear this. No wonder your so worried. I pray the Remicade can work wonders to shrink the mass.

HUGS


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## DustyKat

Hugs to you Ywiggan48. :ghug: 

I am so very sorry to hear about son  what an awful situation to be in, and that’s an understatement! 

This mass, is it inflamed bowel or an abscess and where in the bowel/abdomen is it located? 

Dusty. xxx


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## Marni's mom

Hi everyone.  I haven't been here in almost two years, but it's nice to see some familiar names still here and posting.  It's like going home in a way.  How has everyone's kids been doing?  Marni was very sick and in and out of the hospital when I was last here.  She was in the Spring Semester of her 4th grade year.  She missed about 3 months of school.  Then we had a pretty good run.  Not fantastic, but better than lousy.  I know you all understand what I mean.  But she's back in a flare again and has been almost three months.  She's back on homebound school, too, and missing much of her 1st year of middle school.  I'm now experiencing what so many of you described about your teenagers not complying with meds and feeds and doctor's orders.  It's a whole new dimension of dealing with a kid with Crohn's disease, and it sucks!  Fill me in on what you've all been up to and how your kids are doing.
Stacey


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## DustyKat

Wow! 2 years, where has that time gone?! Welcome back Stacey. :bigwave: 

I am so very sorry to hear about Marni, bless her.  And it surely does suck in all ways. :ghug: 

What treatment is she now on? 

No change with my two hun, they are still doing well. I count my blessings everyday for that and just wish it was the same for you all. :heart: 

Dusty. xxx


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## Farmwife

I'm with Dusty (shocking) on it being two years already.
I'm sorry to hear about your girls current flare. 

As for Grace she's now dx with severe Juvenile Arthritis (runs independent) with her IBD.
We're still trying to get her out of the flares.
But still she smiles and is a tough kid.  

Hugs, its good to hear an update.


----------



## Marni's mom

She still has her mickey button, which I still highly recommend to those of you who have kids on EN and NG tubes, but this time around she refuses ro follow dr's protocol and take the EN or allow me to give her mx injections every week (dr changed her from pills to shots a month ago). We now have $1200.00 worth of methotrexate auto injection pens sitting in our house for which we paid $200 in copay and insurance paid $1000 that we wont be using because she refuses to let me give it to her saying the shots hurt way too much.  What a waste!  So, this past Friday at her follow up appointment he changed her back to mx pills and put her on 40mg daily of prednisone to try to induce remission.  Now she's mad because she's going to puff up and the boys at school will make fun of her.  I pointed out that 1. it was her choice to stay on bowel rest and do it like she is supposed to, or take the easy way and go on prednisone again.  She didn't like either option. And 2. She isn't in school right now anyway.
I also had a consult with a new psychologist who will be seeing her to help her with coping and depression related to her chronic pain.
Meds at this juncture are: azacol, folic acid, humira, prednisone, metronidazole, amytriptylin, and I'm sure I forgot one or two.
What a difference it is now that she's 12 and has a teenager's attitude!  Lord help me!


----------



## my little penguin

Hugs
Ds now has juvenile spondyloarthritis .

Not sure why the auto injectors for Mtx?????
Auto injectors hurt from the force of the spring mechanism -they use them for epipen as well.
Mtx in a vial plus syringe is really cheap -1-2 dollars.

That said I have one teenage kiddo (non Ibd ) and reasoning out consequences is not a strong suit .

Going my Ds who is 11 stays compliant .


----------



## Marni's mom

Omigosh Farmwife, your post came in as I was typing that last one.  Thanks for your update. I'm sorry to hear about the arthritis.   I assume it's not rheumatoid since you said it's unrelated.  This all just sucks so much for our kids.  I read the posts from adults with IBD on the Crohns and colitis facebook support page, and it scares me to think about that kind of future for my daughter where they are unable to work, or get fired for missing work so much and are in depression and facing lonely days alone at home while everyone else is out in the world being productive.  Even though she's only 12 now, I try to talk to her about interests she might have in careers that allow her flexibility to work from home when she's in a flare, but she can't see that far into the future at her age.


----------



## Marni's mom

Re: the mx injection pens...it's not yhe actual shot she says hurts, it's after the shot when the bolus of mx liquiod is in her thigh.  She says that part burns and hurts.  After 2 weeks of shots (2 injections), she refused to let me give her another.  I asked to try in her torso, but she LOUDLY refused that suggestion.

So, both you, MLP and Dusty are dealing with arthritis now, too?  Just keep piling it on, right?


----------



## my little penguin

Back of the arm can also be used less pain that way.
Compared to Humira Ds says Mtx is a piece of cake
But he is on pills now .
Is there a reason she is not on biologics if she keeps flaring so bad for so long ...?
Or has she already failed those ?
Enytio(vedo) and stelera are new and working for some here


----------



## crohnsinct

Hi!  Glad to hear from you again but so sorry it is under these circumstances 

A Flare is bad enough but mix it with the preteen hormones and whoa nelly!  

I have issues with getting O to take some meds but luckily it is just vitamin d or calcium.  Not that they make her feel bad, I think it is just a teen thing to try to exert control over something.  This is why I hold on to Remicade for dear life.  If I had to rely on a self administered med I am sure I would find myself in your same position. 

Please try to remember that a vast majority of the people on these forums are the ones experiencing difficulties and are often the extreme cases.  The healthy ones are off living their life.  For every bad story you hear there are dozens of good ones that you aren't hearing.  This is why I try to stick around here as much as possible.  O is thee years out from dx and 2 1/2 years in clinical remission. I say clinical because she hasn't had a scope since dx.  She is having scopes in March and I fully expect those to reflect full mucosal healing! She is 15.  She has grown 8 inches and gained 30 pounds.  She is healthy as an ox, on dean's list, runs on track team 2 hours a day and then swims on a competitive club team 2 hours a day.   

My youngest daughter was also just dx'd with Crohn's.  She is 11.  We are waiting for MRE to decide on treatment.  

Good luck and do keep us posted. :ghug:


----------



## Maya142

I just wanted to chime in and say my older daughter tried the MTX autoinject pen. She said it did hurt more than the syringe and promptly switched back (much cheaper for our insurance!) within a month. She says the syringe doesn't hurt at all. Have you tried icing the area? She uses her belly or thighs.


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## DustyKat

Marni's mom said:


> So, both you, MLP and Dusty are dealing with arthritis now, too?  Just keep piling it on, right?


Hey Stacey, 

No, there isn’t any arthritis with my two. 

Dusty. xxx


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## Jmrogers4

Hi Stacey, welcome back. Sorry to hear she is going through a flare.  We hit remission about a year ago thanks to remicade and have been growing like crazy.  He is 15 1/2 now.


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## SAHM

:dance:  Reviving this thread too by joining... I'm having a heck of a time.  I have Crohn's, but it's harder to deal with my 13 yr old son's Crohn's than my own.  The good news is, I know that I HAVE to take care of myself so I don't get sick too.  I worry so much about him. Today, I called the insurance company about coverage for counseling, and I'm not sure whether I'm ready to drag him to a counselor, but I am trying to find one in our area for me (easier said than done), so that I can process all of this.  I guess I'm trying to hopelessly fix something that can't be fixed.  I want my kid to be healthy and go to school and feel "normal" again.  Just when things seem to get back to normal, he has a flare.  My sister thinks he is stressing himself out so that he doesn't have to face his fears, thus triggering a flare.  Or maybe it's his diet, or he's doing too much, or not enough. Or it's everything. Or, I just need to put him on the heavy meds and throw up my hands.  Thanks for letting me vent.:heart:


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## Marni's mom

The GI group our doctor belongs to which is part of the larger pediatric specialist group now has counselors in the group to help kids dealing with their medical issues.  It's a long time coming.


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## CarolinAlaska

SAHM said:


> :dance:  Reviving this thread too by joining... I'm having a heck of a time.  I have Crohn's, but it's harder to deal with my 13 yr old son's Crohn's than my own.  The good news is, I know that I HAVE to take care of myself so I don't get sick too.  I worry so much about him. Today, I called the insurance company about coverage for counseling, and I'm not sure whether I'm ready to drag him to a counselor, but I am trying to find one in our area for me (easier said than done), so that I can process all of this.  I guess I'm trying to hopelessly fix something that can't be fixed.  I want my kid to be healthy and go to school and feel "normal" again.  Just when things seem to get back to normal, he has a flare.  My sister thinks he is stressing himself out so that he doesn't have to face his fears, thus triggering a flare.  Or maybe it's his diet, or he's doing too much, or not enough. Or it's everything. Or, I just need to put him on the heavy meds and throw up my hands.  Thanks for letting me vent.:heart:


SAHM, let me encourage you that counseling can be a good thing.  I think it helped my daughter's anxiety over her Crohn's and helped me to understand the source of her fears so I could stop playing my part in creating the environment of fear, or something like that.  I hope you both can find healing and normalcy and peace.


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## Hope345

Counseling sounds like a good idea to help the whole family.

carol:  please expand on your comment about eliminating fear.  It may help all of us mother's with children IBD.


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## Clash

SAHM, if he sees a GI in a large group or affiliated with a children's hospital they sometimes have councelors that specialize in kids and chronic illness if you do decide for him to see a therapist. I think if you take that route for him finding someone who specializes in that would be the best.


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## CarolinAlaska

Hope345 said:


> Counseling sounds like a good idea to help the whole family.
> 
> carol:  please expand on your comment about eliminating fear.  It may help all of us mother's with children IBD.


Hope, A lot of Jaedyn's fear at the time centered around having to have a G-tube. I was so stressed at the time about her health and frustrated with her not eating. I would use that as a threat to try to motivate her, but in reality it was making her more anxious, and the anxiety made her symptoms worse. Her counselor pretty much said making her get it G-tube would be something like abuse because she was so afraid of it . This opened up a lot of conversation over the G-tube, and we took it off the table as an option. I started working on finding positive ways to motivate her and a lot of her anxiety about her crohns improved.


----------



## upsetmom

I have a question and don't really want to start a new thread, so l'm hoping someone will be able to help me.

My daughter's knees have been hurting a lot the last few weeks and its come to the point where she can no longer bend them without being in a lot of pain. We've mentioned this to the GI many times but he keeps telling her to take Panadol, which doesn't help at all. I've given up on contacting the GI so l've made an appointment with our GP next week. My question is will an xray show anything or will we have to see a rheumatologist to figure out what's happening?

Thanks.


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## Maya142

You probably need to see a rheumatologist. M's first joints affected were her knees. Her x-rays were normal but an MRI showed a lot of inflammation and fluid in her right knee.


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## my little penguin

Rheumo would really be your best bet 
They can mri her knee and sometimes just by feelings and bending tell you what is going on
JSPA does occur a lot with crohns so make sure to ask if the Rheumo ruled that out 
Juvenile spondylarthritis 

Good luck


----------



## Maya142

^ Absolutely true - she won't necessarily need to have an MRI. M's right knee was very swollen and we were actually worried about an injury (even though her dad and sister have AS...wishful thinking!).

I wish I had solutions for pain relief in the mean time but all I can think of is heat and ice. We tried some over the counter creams like Bengay that didn't help much. NSAIDs did help but most kids with IBD are not allowed to take them (M's GI has allowed her to take them since her arthritis is so bad). Your GI might be ok with Voltaren gel though, since it is less likely to hurt the stomach. It's by prescription here but I believe it is over the counter in other countries. M's GP prescribed it for her initially - you may be able to get it before seeing a rheumatologist. 

 M had a knee brace for a right knee but it sounds like that might her knee hurt more if she is having trouble bending it (incidentally, M couldn't fully straighten it, but bending it was fine!).


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## upsetmom

Thanks Maya and MLP....I do have some Voltaren gel at home, so we'll give that a go.


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## DustyKat

Where is she at with her Crohn’s upsetmom? 

Large joint pain runs parallel to intestinal inflammation. 

Dusty. xxx


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## CarolinAlaska

I vote for peds rheumatologist.


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## upsetmom

DustyKat said:


> Where is she at with her Crohn’s upsetmom?
> 
> Large joint pain runs parallel to intestinal inflammation.
> 
> Dusty. xxx


After a recent course of flagyl she has started flaring again. Never been in remission.  We're looking at moving on to an adult GI soon as her GI doesn't want to change her medication.


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## DustyKat

Poor girl.  I hope you can get onto a new GI soon upsetmom. :ghug: 

Dusty. xxx


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## Momoftwo

New new mum to all this, daughter dx last year 16. On humira 40mg after a year on 20 and only a few months of feel descent. After 4 bi weekly shots it seems the 40mg may just be starting to help. Anemia, and in the ileum. Any advice? On anything I should maybe try or be helpful with. Thanks in advance.


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## vcp420

My son was facing an increase in his Remicade dose 2.5 years ago. In the weeks before the next infusion with a higher dose, he tried the specific carbohydrate diet. His symptoms improved massively, his labwork became normal, and he never needed the higher dose of Remicade. Now his doctor has given him the OK to go off the Remicade. Don't overlook the potential contribution that a dietary change can make. My son would never be where he is today without having changed his diet.


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## Momoftwo

I was wondering about having daughter food allergy tested. Is that something that anyone as done before starting a certain way of eating? Thanks


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## DustyKat

@Momoftwo: 

With disease in the ileum have bloods been done recently for B12, Iron Studies, Folate, Vit D, Magnesium and Zinc?


----------



## Momoftwo

Every three months blood work done, only showed low in protein this last time. Not sure what is really checked on other than iron. Still new to all this and thought maybe the allergy food test would help? She Was told to eat anything and everything per GI to gain weight, but if she does t take Miralax everyday we run into lots and lots of pain and gas, so maybe it's the food?


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## DustyKat

It wouldn’t hurt to have allergy testing done. 

Unfortunately diet is like everything else with this disease, highly individual. By all means try whatever you think may provide relief but you will find there is a lot of trial error. Also keep a food and symptoms journal so you track if there are some foods that proving more problematic than others. 

When was her last scope?


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## my little penguin

Do not do IGg testing - this is not a food allergy - some nauropaths suggest it is but your body is suppose to produce IGg to food and other things .
True food allergies cause reactions can be determine with IGE testing and skin testing by a board certified allergist. But randomly testing for food allergies is not recommended since your blood can test positive but not be allergic 
Only with known history of reaction and positive Ige blood tests or skin tests are you considered allergic


Food intolerances are a different story there isn't a good test for those 
Elimination diets are the only way to figure those out and introduce see a delayed reaction and then repeat to see if a delayed reaction is seen again 

Ds has true food allergies to tree nuts , fish , and sesame . These he carries and epi pen for and avoids at all costs .

He has food intolerances we found by the crohns exclusive diet to chicken and beans and wheat . These cause Gi distress but will not kill him big difference .

Remicade is not recommended to be stopped EVER .
Unless it stops working 
Or you have a reaction


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## buchanaj

Why oh why do I have to travel for work just a few days after DD's scopes and starting treatment. I know my DH is capable of caring for her but it's just not the same. She wants me there and I can't be. DH isn't as patient and they will argue. She doesn't need to be stressed out.


----------



## Momoftwo

so sorry @buchanaj it's so hard to not be able to be there for them at those times, my dd  wants me there as well, dads great but sometimes you just want mom.


----------



## vcp420

“Kaplan-Meier analysis of the proportion of patients with sustained clinical benefit demonstrated that 50% relapsed within 477 days after infliximab discontinuance. In contrast, 35% of patients remained well, and without clinical relapse, up to the end of the nearly 7-year follow-up.”


This study demonstrates that up to 67% of patients with IBD in deep remission at the time of cessation of TNF-alpha blocking therapy remained in clinical remission during the 12-month follow-up. The majority of patients (85%) in clinical remission also remained in endoscopic remission.” Retreatment with anti-TNF therapy after a patient relapsed was effective in 94% of patients.


----------



## topperdoy

Hi, I am mom of two adult children with Crohn's Disease. Lately, a friend's daughter died of Leukemia from being on an immune suppression drug for an organ transplant. Got me to worrying about the incidence of cancer for Crohn's patients taking immune suppression.


----------



## Maya142

Hi and welcome! What medication are your children on? The incidence of cancer varies depending on the medication. For example, 6MP/Imuran would be the highest risk - they are associated with Lymphoma and non-melanoma skin cancer. There have also been some cases of hepatosplenic T-cell Lymphoma, mostly in young adult/adolescent males who have been on 6MP/Imuran and Remicade. However, that is very, VERY rare.

But many pediatric GIs have stopped using 6MP and Imuran for that reason. MTX is considered safer, so that is being used more and more as an immunosuppressant for Crohn's, instead of 6MP and Imuran. Biologics are also considered safer.

Remember that inflammation itself puts you at a higher risk for cancer. So treatment is very important to control the inflammation.

I'll tag my little penguin because she knows the statistics.


----------



## crohnsinct

I also want to add hat I think the doses they use for organ transplant may be  way higher.  IDK if that would be a factor but maybe?


----------



## Catherine

topperdoy said:


> Hi, I am mom of two adult children with Crohn's Disease. Lately, a friend's daughter died of Leukemia from being on an immune suppression drug for an organ transplant. Got me to worrying about the incidence of cancer for Crohn's patients taking immune suppression.


I know of one child who died from leukaemia following a dx Crohn's but that child was miss dx with Crohn's disease when it was leukaemia along.

This a number of years ago.


----------



## Leed2713

Hi all my son has been suffering faecal loading since last march and had manual evacuation with scopes last Thursday. He is on 8 laxido, 20ml sodium picosulphate, 2 senna tablets and bisocodyl suppostitory daily from November. Last Thursday the gastroenterologist said that faecal loading was higher up the colon than he had expected and had flushed him out with litre of saline solution. The scopes did not note any inflammation which is great. He is also in humira bi weekly. He has been in constant pain daily for months now. His faecal calprotectin is normal as all bloods. So crohns appears to be well controlled. He is sleeping at night and taking painkillers which he said is not helping. He cant get out of bed everyday and is having to be wakened at my mothers after 2 every afternoon. He is 14 and missing a lot of school. He has had breakdowns about this constant pain. can anyone suggest what this can be ? the gastro team feel its not crohns or medication related. Gabapentin has been mentioned in the past but it along with other stronger pain relief meds have the side effect of constipation so would not help with his impaction issues. I really am at a loss as he should now be cleared after last weeks procedure but the pain is still very much here and the severe fatigue. any advice or help would be so appreciated thank u xo


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## my little penguin

You said he is on painkillers 
Those will cause the gut to stop 
Tagging farmwife Maya142 
Is there a pediatric amplified pain clinic near you ?
Will the doc let you stop the painkiller meds ?
How does his body do on een (formula only)?
Is he a liquid in liquid out sorta kiddo or constipation kiddo on all formula ?

Sometime they get in a cycle
Gut slows down for whatever reason 
This hurts horribly 
They give painkillers
This slows or stops the gut completely 
That hurts more so more painkillers 
And the cycle repeats 


Two years ago Ds gut would not move after a week bout of constant hospitalized diarrhea we switched so many things around no one knew what was causing what problem 
In the end we reduced his formula intake 
He had been on 100% amino acid based (elemental formula )
And added 50% food instead 
We also increased miralax considerable 

But higher miralax while he was on all formula did nothing 
Until food was added 

This was months of misery 

Nothing was wrong other than his body got into a very bad loop 

It didn’t fix over night 
But he was able to get back to normal after a lot of changes

Now we don’t let him not go for more than two days 

Now that he is cleaned out 
Is he have 1-2 soft bm a day ?
Big hugs 
Slow motility is horrid


----------



## Leed2713

Hi the painkillers are just paracetamol but he has been refusing them as he said they don't help with pain at all. Im not sure about paediatric amplified pain clinics must look into that im in Ireland. The pain killers as I say are just when he will take them but has been refusing as he said isn't touching the pain at all. He has been on een 3 times since diagnosis and it does work well with him. They haven't suggested it this time as they have said it is not the crohns. Hes on the constipated side and is loading at his transverse colon and descending. He had impaction closer to rectum in xrays in December but since having few phosphate enemas it has been higher up. My son is going some days with overflow but other than that could be few days with nothing. even with the high dose laxatives. God help your son glad he got some relief it really is heart breaking. I don't know what to do as my son is sleeping his life away and when not sleeping he is in constant pain. All bloods are normal though and scopes didn't see any inflammation. im not sure if any biopsies have been taken.


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## my little penguin

My suggestion for een was purely to loosen stool if he was s the type of kiddo who when on een switches from constipation to diarrhea 
Mine used to when she was on semi elemental 

One thing they told use woth chronic pain
They need to be at school 
Be up exercising 
These things lessen how the body processes pain
It seems cruel but it does help 
30 minutes of exercise a day 
We started with just walking slowly in the pool
School is a necessary distraction

Not napping during the day 
So he gets woken up early 7-8 am even if he tired 
Then has to move
Sleeping constantly and not moving makes pain worse
Since they focus on pain 
Do not ask about the pain
Let him tell you 
Acknowledge it 
Assign a number 1-10 and move on 
Heat -heating pads helped Ds
Hand held massager put on his belly moving in a circle to move things along
Tens unit 

Keep a good diary 
Have a nutritionist look it over 


Moving especially walking is key 
Regular walking hurt Ds too much
So the pool was a big help 


Hugs


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## Leed2713

yeah he has been going to school except this week and end of last week with the scopes. He hasn't lasted full days though. He has been using the computer as a distraction and seen clinical psychologist few weeks ago. In a months time this will be a year from all this started. that was when we found out he had developed antibodies to infliximab and started humira. His brother had taken him around the local racing track for walks before he started to get worse. I think your right he would need to be doing this everyday. Im just concerned as im being told its not Crohn's related but its still his stomach this is in pain and he is so tired all the time. It could be being a teenager too I suppose. It was disheartening for him last week as he thought pain was going to leave on Thursday after they attempted the clear out during the scope. He also has aspergers syndrome and generally has a high pain threshold. Im hoping everyday that this will pass soon. There are people on here in a lot worse positions so I need to be grateful. Just very hard to see him in constant pain. xoxo


----------



## Leed2713

My little penguin - I like the idea of the swimming pool definitely going to give it a try xo


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## crohnsinct

Ongoing pain can really tire a person out. 

No activity can make the constipation worse.  Exercise is a big component on alleviating constipation.  It wakes up the bowels and gets them moving.  My non Crohn's daughter suffered terribly from constipation as a kid. Even got to the point of rectal prolapse.  We had to have her drink a lot of water.  Most teens don't drink nearly enough water.  She also was a swimmer and we found that swimming helped move her bowels.  It was something about the exercise but more the water.  Maybe the kicking motion?  The relaxation that comes from the repetitiveness of doing laps etc.  

Good Luck.  It is so hard to deal with somewhat normal kid things when they have Crohn's.  We are always wondering what is causing what.  Hugs!


----------



## Maya142

Yes, I agree with what my little penguin said.  It sounds awful and cruel to make a child in pain get up and get moving and go to school, but it really helps.

There is a great book called "Conquering your Child's Chronic Pain" - you can get it on Amazon. It talks about amplified pain and how it is treated. Amplified pain is essentially over-active nerves that are sending pain signals to the brain when they shouldn't be. It can be triggered by inflammation or even something like constipation - his nerves are so used to sending pain signals because of the constipation that even when it's gone, they continue to send them.

That is pretty simplistic but that's how it was explained to us .

The idea is to live as normally as possible. The kiddo is supposed to go to school, extracurriculars and just keep themselves busy. Parents are not supposed to ask "How are you feeling?" constantly because it draws attention to the pain. Instead, if the child says he is in pain, suggest a distraction - whether it is going for a walk or reading a book or even watching TV.

The goal is to get the kiddo functioning as normally as possible. Over time, the pain will reduce. You can try meds like Gabapentin - they are used for this kind of pain. Opioids are a bad idea because like you said, they will worsen constipation.

Start small - whether it is 10 minutes in the pool or a 10 minute walk. Exercise really helps, so daily exercise is a must. My daughter tries to walk or bike for 20-30 minutes daily. When she is home (she is at college now) she also swims.

If he can't do full days at first, do a week of half days, then try full days. Tell him he can go to the nurse if he needs to, but being in school is really important. His brain will be busy focusing on school work and not on the pain.

Physical therapy can help. The pediatric pain programs they have the in US are amazing - I would see if there is an equivalent in the UK. My daughter did one and it really taught us to think about pain very differently.

Seeing a psychologist to learn different ways to cope with chronic pain is also very helpful. Meditation, imagery, breathing can all help.


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## Leed2713

crohnsinct said:


> Ongoing pain can really tire a person out.
> 
> No activity can make the constipation worse.  Exercise is a big component on alleviating constipation.  It wakes up the bowels and gets them moving.  My non Crohn's daughter suffered terribly from constipation as a kid. Even got to the point of rectal prolapse.  We had to have her drink a lot of water.  Most teens don't drink nearly enough water.  She also was a swimmer and we found that swimming helped move her bowels.  It was something about the exercise but more the water.  Maybe the kicking motion?  The relaxation that comes from the repetitiveness of doing laps etc.
> 
> Good Luck.  It is so hard to deal with somewhat normal kid things when they have Crohn's.  We are always wondering what is causing what.  Hugs!


Yeah swimming is definitely something I am going to try. Exactly I was even researching EDS as I seen parents talk about it on here and thought is this a possible explantion as the fatigue and impaction are not being attributed to the crohns at all. We have been keeping the water intake up as it was recommended especially with the high dose of laxido that he is on daily. You are so right crohns does make dealing with everyday kids things harder. I suppose everyday is a learning day with it xo


----------



## Leed2713

Maya142 said:


> Yes, I agree with what my little penguin said.  It sounds awful and cruel to make a child in pain get up and get moving and go to school, but it really helps.
> 
> There is a great book called "Conquering your Child's Chronic Pain" - you can get it on Amazon. It talks about amplified pain and how it is treated. Amplified pain is essentially over-active nerves that are sending pain signals to the brain when they shouldn't be. It can be triggered by inflammation or even something like constipation - his nerves are so used to sending pain signals because of the constipation that even when it's gone, they continue to send them.
> 
> That is pretty simplistic but that's how it was explained to us .
> 
> The idea is to live as normally as possible. The kiddo is supposed to go to school, extracurriculars and just keep themselves busy. Parents are not supposed to ask "How are you feeling?" constantly because it draws attention to the pain. Instead, if the child says he is in pain, suggest a distraction - whether it is going for a walk or reading a book or even watching TV.
> 
> The goal is to get the kiddo functioning as normally as possible. Over time, the pain will reduce. You can try meds like Gabapentin - they are used for this kind of pain. Opioids are a bad idea because like you said, they will worsen constipation.
> 
> Start small - whether it is 10 minutes in the pool or a 10 minute walk. Exercise really helps, so daily exercise is a must. My daughter tries to walk or bike for 20-30 minutes daily. When she is home (she is at college now) she also swims.
> 
> If he can't do full days at first, do a week of half days, then try full days. Tell him he can go to the nurse if he needs to, but being in school is really important. His brain will be busy focusing on school work and not on the pain.
> 
> Physical therapy can help. The pediatric pain programs they have the in US are amazing - I would see if there is an equivalent in the UK. My daughter did one and it really taught us to think about pain very differently.
> 
> Seeing a psychologist to learn different ways to cope with chronic pain is also very helpful. Meditation, imagery, breathing can all help.


I will definitely be making a purchase from amazon of that book thanks so much for recommendation. I will try anything. I took him around the track and told him we will be doing that each evening once I finish work and also pool at least once per week. It really has consumed his life for the last year. Sometimes it feels like you jump one hurdle nad another makes its presence known. I have been researching what causes loading in transverse and ascending colon but not really coming up with anything. It may just be something he will have to live with. I also am not sure if taking all of the laxitives and meds at the moment are going to make him dependant completely on them for a bowel movement. He is really just having overflow whenever he has a motion. 
Your so right everyone is always asking how he is feeling so I must stop this too. I never thought of it that way but it is drawing attention to the pain. The psychologist was happy with his distraction techniques but possible breathing techniques could be explored better. 
Gabapentin was mentioned last year but I thought a side effect of it could be constipation. There was another amitriptyline I think it was called. Do you have any experience with it ?
The physical therapy sounds great too. I need to look into it. I need to think more positively as I keep thinking must be something else as he is always such a bad colour, in pain and so tired all the time. We have tried a lot of things in last year but need to be more consistant xo


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## Maya142

My daughters have tried both Gabapentin and Amitriptyline. The younger one is on Gabapentin. She is not sure if it is helping with pain, but it is certainly helping her with sleep. Sleep is one of her big issues - she wakes up a lot from pain - so having something that helps is great. No side effects besides sleepiness.

But she does need Miralax daily because she is on other pain meds due to joint damage from her arthritis.

Older one tried Amitriptyline years ago. Now I can't remember if it worked or not! I do know it can cause constipation.

Has he seen a motility specialist to figure out why this is happening? Would it be possible for you to see one?


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## Leed2713

Maya142 said:


> My daughters have tried both Gabapentin and Amitriptyline. The younger one is on Gabapentin. She is not sure if it is helping with pain, but it is certainly helping her with sleep. Sleep is one of her big issues - she wakes up a lot from pain - so having something that helps is great. No side effects besides sleepiness.
> 
> But she does need Miralax daily because she is on other pain meds due to joint damage from her arthritis.
> 
> Older one tried Amitriptyline years ago. Now I can't remember if it worked or not! I do know it can cause constipation.
> 
> Has he seen a motility specialist to figure out why this is happening? Would it be possible for you to see one?


Sounds like gabapentin really would be worth a try. God love your girls dealing with crohns and arthritis warriors they are.

There has been no mention of a motility specialist to figure out why this is happening. I would be delighted if it was suggested as I would like to know what the cause is. The nhs is really stretched her and getting appointments can have a long waiting time. I must check with the gastro nurse if there are any motility specialists here that I can take him to. Do you know what could cause this ? xo


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## Maya142

I honestly don't know. My daughter has a different motility issue - Gastroparesis - and that is why we saw a motility specialist. I was just wondering if the motility meds used for Gastroparesis, might work in his case but I really don't know what is normally done for fecal loading.

But it's at least worth asking about, if there is a motility specialist you can see.


----------



## Leed2713

Maya142 said:


> I honestly don't know. My daughter has a different motility issue - Gastroparesis - and that is why we saw a motility specialist. I was just wondering if the motility meds used for Gastroparesis, might work in his case but I really don't know what is normally done for fecal loading.
> 
> But it's at least worth asking about, if there is a motility specialist you can see.


Gastroparesis has never really been mentioned. He actually had a barium swallow I think test was called last year when this all started. After it they actually commented on how fast it went from stomach through small intestine. He did have a narrowing from surgery resection site but was getting through fine. It seems to be after this that it slows down. I really will be finding out about a motility specialist as no one is suggesting what is causing this. I know ibs may cause this but surely then it would have always been an issue and not just started xo

Im so glad to hear that they are able to help your daughter with motility meds for the gastroparesis xo


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## crohnsinct

Just going to throw a couple other thoughts out there.  Dairy is known to be a common food intolerance that can cause constipation.  Perhaps there are other food intolerances that may be causing this.  

Also, IBS does cause constipation and many IBDers have an IBS overlay.  My older Crohnie was dx'd with IBS by her last GI, emphasis on last.  It wasn't IBS, it was a flare, but her new GI also said he thinks she has SIBO (small intestinal bacteria overgrowth).  It is very common in IBD patients and especially happens around flares and in patients who have had previous surgery.  It is very, very often misdiagnosed as IBS because it produces many of the same symptoms.  Diarrhea is more usual but it can produce constipation.  The test for it is an easy in office breath test.  

I am assuming he was checked for Celiac at scopes but Celiac could also cause constipation. 

Ugh!  The gut is so cloudy!


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## Maya142

If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.

https://aboutconstipation.org/colonic-inertia.html


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## Leed2713

Maya142 said:


> If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.
> 
> https://aboutconstipation.org/colonic-inertia.html


Yeah that's what I was thinking that it wasn't the same but had been trying to find other possible causes for slowing down when it got to the large intestine. I have been reading the book I got from amazon and it has made me so interested in the pain management clinics mentioned. However none in Ireland or uk I can find. Its interesting too as aspergers syndrome is mentioned as well IBD. He also has aspergers syndrome. His school has contacted me today to say that he is so unhappy at school and they want a meeting.


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## Leed2713

crohnsinct said:


> Just going to throw a couple other thoughts out there.  Dairy is known to be a common food intolerance that can cause constipation.  Perhaps there are other food intolerances that may be causing this.
> 
> Also, IBS does cause constipation and many IBDers have an IBS overlay.  My older Crohnie was dx'd with IBS by her last GI, emphasis on last.  It wasn't IBS, it was a flare, but her new GI also said he thinks she has SIBO (small intestinal bacteria overgrowth).  It is very common in IBD patients and especially happens around flares and in patients who have had previous surgery.  It is very, very often misdiagnosed as IBS because it produces many of the same symptoms.  Diarrhea is more usual but it can produce constipation.  The test for it is an easy in office breath test.
> 
> I am assuming he was checked for Celiac at scopes but Celiac could also cause constipation.
> 
> Ugh!  The gut is so cloudy!


Oh it really is I wish I could help him as its really affecting his life now to the point that his school has just rang and want to meet with me. He is miserable all the time and says he just feels horrible all the time. Last year he was given some treatment for bacterial overgrowth as it was a suggested possibility. It didn't make any difference though. That is interesting about the celiac I am unsure if he was ever tested but will be asking the question xo


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## Leed2713

Maya142 said:


> If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.
> 
> https://aboutconstipation.org/colonic-inertia.html


Thank u for the link also Maya142 xo I am going to take him to my GP as his consultant is so busy and see if they know where he can get transit test carried out


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## susangrant

My 17 year old son was diagnosed with probable UC/ but can't rule out Crohn's yet- so they are calling it unspecified. Its been a tough year with many meds, 
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response. 
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods. 

How long do people give remicade a chance? How soon should we see a response?

it sucks being worried all the time.


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## Jmrogers4

Some people have relief immediately and some can take 6 months to a year to see full results.  My son saw immediate relief but took a full year to reach full remission. 
Even with remicade it can take messing with the dosage and timing to see results.  
It's so hard because we all want that immediate fix for our kiddos and waiting is tough!


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## crohnsinct

Antibiotics can really mess up the gut and so that might be clouding things right now.  Give it a little time.  It took my daughter 6 months to get a full response to Remade.  Lots of tweaking doses and schedule etc. 

If symptoms persist I would mention them to GI and see what they say.


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## Maya142

I would say that you have to wait till the CDiff is cleared up. Then you will see if he is responding to the Remicade or whether he needs the dose or frequency increased. My daughter started out at 5 mg/kg but eventually needed 7.5 mg/kg and then 10 mg/kg every 5 weeks or so, before she went into remission. The good part about Remicade is that you have a lot of room to play with the dose and frequency, which is not the case with other biologics.

It took 3-4 months before my daughter felt GOOD on Remicade.

She also has had CDiff - twice - and it really is the absolute worst. Since you say he has had recurrent CDiff, are they treating him with Vancomycin? And has a fecal transplant been brought up?


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## susangrant

thank you for the quick responses. I'm so glad of all your supports- We have felt so alone. 


He had one c-diff episode last month- treated 10 days of vanco., it came back and now they are using metronidazole for another 10 days. We are not yet at the fecal transplant step. 

thanks for the remicade info... I need to be patient I guess, but its so hard...


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## Maya142

We used Vancomycin both times - we were told that in IBD patients the recommendation is to skip Flagyl and to use Vanco. The guidelines for adult IBD patients also state that Vancomycin should be used....I'd bring it up if Flagyl does not work for him.

We were told my daughter would need to have CDiff 3 times to have a fecal transplant - so we aren't there yet either (and I hope we don't get there!!).

Hang in there. CDiff is really tough - I'd focus on keeping him hydrated and once he is done with the abx, wait and see how he does on the Remicade. 

There is a lot of "wait and see" in the IBD world - I think it's one of the hardest parts!!


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## Jo-mom

Hi, not sure how this works, I just joined - I am a mother of a son who was diagnosed with crohns July 2018.  Prior to finding this news, we learned that he had advanced arthritis in his hips, and then his Si joint.  Arthritis exhibited symptoms before Crohns which was pretty silently doing it's thing in the background.  Really surprised that he was even told to visit GI specialist and then learned about Crohns.  Seems like as soon as we learned this, it got worse.  He has been on remicade for 3 1/2 months and doing well, however, there wa a set back after his 3rd infusion and we had to speedily to another one 3 weeks before his 4th infusion.  It appears he is metabolising quicky so doc wants to put him on 4 week schedule, and he is currently reloading.  Has anyone heard of re-loading remicade.  I have read many messages and haven't read anything about loading doses for the 2nd time.  I too understand what you are all going through.  Even when he is well, I am always worried that it won't last, and it's causing me anxiety!  He was diagnosed at 19 and is currently 20, is pretty thin but has gained some weight since started Remicade.  I am glad I found this thread.  I think we would all trade places with our kids if we could.


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## my little penguin

Welcome
Tagging
Maya142
Crohnsinct
Pdx
Peanutbutterlovesjelly 

You can add calories with formula in addition to food 

Ensure or boost both work well for adults 
Some need semi elemental (peptamen)

Een can boost remission (exclusive enteral nutrition-formula only )
No solid food 

Does nothing for his ankylosing SpondyloArthritis though 

Sometimes remicade needs een plus mtx to get things under control 

Ds was dx at age 7 
Now is 15 
Ds is a high metabolizer as well 
He is currently on Stelara every 4 weeks 
He was on remicade and humira over the past 7 years


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## Jo-mom

Thank you for your reply.  L probably had arthritis for a few years, although Crohns wasn't obvious, but the signs were not obvious - thought it was just how he walked, and even the chiropractor and family doctor didn't catch on right away.  Anyway, this is all pretty new.  How is your child doing with Stelara?  Is Stelara good for both IBD and AS?  :ywow::ywow:


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## my little penguin

Ds has juvenile SpondyloArthritis ( not AS - no spinal involvement yet)
But is his b27 positive so watching him closely 
Stelara at high frequency(every 4 weeks)  has helped both his arthritis and his Crohns 
But still needs mtx and Celebrex for his arthritis as well


Humira also helped both but had to add mtx 
Remicade he wasn’t dx with arthritis yet (so it may have been helping ..,)


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## Maya142

Stelara is NOT good for AS. In fact, it failed in phase III trials and the study was terminated early.

Stelara does seem to work for peripheral arthritis but not for spinal (axial) involvement, which includes the SI joints. It's used in psoriatic arthritis but most rheumatologists will tell you that it's not very effective for that either.

To actually have an official diagnosis of Ankylosing Spondylitis, there has to be damage to the SI joints that shows up on x-ray. However, damage takes quite a while to show up - it can take 8-10 years, so it's rare to see it in kids/teens. 

If there is no damage visible on x-ray but inflammation is visible on MRI, that means your son has juvenile axial spondyloarthritis (SpA). It has not yet progressed to AS and the goal of treatment is to prevent that progression.

My husband and daughters all have AS. Initially though, my girls were diagnosed with juvenile SpA. My older daughter progressed to AS in 5 years. My younger one took only 3. My husband has pretty severe AS - he also developed severe hip arthritis in his 20s. He has had 5 hip replacements, starting at age 30, fused SI joints, a damaged ankle and some spinal fusion.

Anti-TNFs are the best option for patients with both axial SpA and IBD. Typically Remicade or Humira. You want to treat aggressively, to prevent further damage to his hips and SI joints. My girls have been on anti-TNFs for years and my older daughter did great on them.

My younger one has severe AS - pretty much every joint of hers is involved, from her toes to her jaw. We made the mistake of not treating her aggressively enough when she was younger and only had a few joints involved, and she is paying the price. 

She is 22 and it is looking like this year she will need a jaw replacement. She has very stubborn AS - we tried everything: Humira, Remicade, Simponi, Cimzia, Enbrel, Methotrexate, Arava, Imuran, Sulfasalazine and so on. We finally moved on to IL-17 inhibitors - Cosentyx and Taltz - and those have REALLY helped her. However, they can cause a Crohn's flare and aren't meant to be used in AS patients who also have IBD. But because my daughter's AS is SO much worse than her IBD, we chose to risk that. 

Her IBD has been mild. Her Crohn's diagnosis was a surprise too - her only symptoms were lower right abdominal pain, some weight loss and occasional constipation. But her Crohn's has responded very well to anti-TNFs, thankfully. 



> Has anyone heard of re-loading remicade. I have read many messages and haven't read anything about loading doses for the 2nd time. I too understand what you are all going through. Even when he is well, I am always worried that it won't last, and it's causing me anxiety! He was diagnosed at 19 and is currently 20, is pretty thin but has gained some weight since started Remicade. I am glad I found this thread. I think we would all trade places with our kids if we could.


I have heard of reloading with Remicade. Usually it's done when there's been a break in treatment, but it makes sense to do it in your son's case, since there was no Remicade in his body and you're essentially starting from scratch.

There is also high dose Remicade - they can go up to 20 mg/kg every 4 weeks. My younger daughter tried that and it worked for a while. But she doesn't respond well to anti-TNFs in general. My older daughter does. She has had an easier time than her sister, thankfully. She has hip, SI joint, jaw, knee, ankle involvement. But anti-TNFs controlled her arthritis well (mostly) and she has been able to live a pretty normal life.

For juvenile spondyloarthritis, it is not uncommon to get Remicade every 4 weeks. The FDA approved dose for AS is 5 mg/kg every 6 weeks. For Crohn's it's started off at 5 mg/kg every 8 weeks and the dose/frequency is changed if necessary. Both my girls had infusions at every 4-5 weeks when they were on Remicade.


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## my little penguin

Maya142
What was the dose and frequency of the AS trials with Stelara?
If it was the PsA dose of 45 mg every 12 weeks vs the Crohns dose of 90 mg every 4-8 weeks 
That’s a big difference.
I haven’t seen the study recently


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## my little penguin

> In this prospective, open-label, single-arm, proof-of-concept clinical trial (ClinicalTrials.gov identifier NCT01330901), ustekinumab in a dose of 90 mg was administered subcutaneously at baseline, week 4 and week 16 in 20 patients with active AS. Eligible patients were required to have a diagnosis of AS according to the modified New York criteria and an active disease defined as a Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) score of ≥4 despite previous non-steroidal anti-inflammatory drug (NSAID) treatment. The primary study endpoint was the proportion of patients reached the Assessment of SpondyloArthritis International Society 40 (ASAS40) response at week 24.
> 
> RESULTS: At week 24, ASAS40 response was reached by 65% of the patients. ASAS20, ASAS5/6 and ASAS partial remission were observed in 75%, 50% and 30% of the patients, respectively. A ≥50% improvement of the BASDAI (BASDAI50) occurred in 55% of the patients. A total of 50% and 20% of the patients achieved the AS Disease Activity Score (ASDAS) clinically important improvement and major improvement, respectively. At week 24, 35% of the patients had an ASDAS inactive disease (ASDAS <1.3). Significant improvement of other patient-reported outcome parameters and active inflammation as detected by MRI as well as significant reduction of NSAIDs intake occurred during the treatment. Clinical response correlated with reduction of active inflammation on MRI and of serum C reactive protein level. Overall, ustekinumab was well tolerated.
> 
> CONCLUSIONS: In this prospective, open-label, proof-of-concept clinical trial, ustekinumab treatment was associated with a reduction of signs and symptoms in active AS and was well tolerated.


From

https://www.ncbi.nlm.nih.gov/m/pubmed/24389297/


Found this study from 2013
But no Crohns loading dose was used 
And they waited 12 weeks from 2nd to 3rd shot


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## my little penguin

> Rheumatology key messages
> 
> 20–40% of patients with AS do not respond to TNF inhibitor therapy.
> Secukinumab is the first IL-17A inhibitor approved for active AS.
> Both Janus kinases and IL-12/IL-23 inhibition show promise as targets in AS patients.


This one from 2018
Says it shows promise as well

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6238222/

*
Therapies in ankylosing spondylitis—from clinical trials to clinical practice

Hasan Tahir
*


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## my little penguin

> Data from TOPAS prompted the initiation of a multicentre phase 3 trial programme. The first of two randomized phase 3 trials investigated the efficacy of ustekinumab compared with placebo in patients with AS, following an inadequate response or intolerance to TNFi therapy (TNFi-IR) [34, 35]. Patients received ustekinumab 45 or 90 mg s.c. at weeks 0 and 4, and then every 12 weeks to week 52. Patients in the placebo group received s.c. placebo injections at weeks 0, 4 and 16 before being re-randomized to ustekinumab 45 or 90 mg, with s.c. injections at weeks 24 and 28 and every 12 weeks thereafter [34]. The second phase 3 trial included patients with non-radiographic axial spondyloarthritis, and compared ustekinumab (45 or 90 mg) with placebo. Up to week 52, ustekinumab was administered according to the same schedule as that described for the phase 3 study in AS. Placebo was administered every 4 weeks until week 24, when patients were switched to ustekinumab [35]. These studies have been terminated since ustekinumab did not achieve key endpoints in a related study [34, 35].



From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6238222/


Found it 
So basically given the PSA dose at 45 mg to 90 mg EVERY 12 WEEKS

If it’s only given every 12 
I can say from what I have seen with ds alone 
The drug is NOT effective at all for arthritis even at every 8 
Let alone at every 12 
Once he switched to every 4 things improved

My point is they may see different results of the dose was higher and given more frequently 
Vs using the lower PsA dosing which is not going to be effective at all


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## Maya142

Oh absolutely - I think if rheumatologists could prescribe a higher dose, it MAY work. But the fact is that most patients with a rheumatic condition aren't going to get more than 45 mg every 12 weeks or if they're over a certain weight 90 mg every 12 weeks.

90 mg every 4 weeks may have worked but there are no trials to support it. In the early study, yes it did seem to work. That was a proof-of-concept study though and a very small study - 20 patients!!

But until there are studies done again in AS, we cannot say it works. Most patients with AS do not have IBD and so they would get the PsA dose - 45 mg every 12 weeks. At most, 90 mg every 12 weeks. 

We have been following Stelara for years - since 2012. We have talked to several top AS researchers all over the country whom study AS. All have used Stelara and none have had good results. ALL told us not to bother trying it, that it was unlikely to work for my daughter with severe axial and peripheral arthritis. We asked rheumatologist after rheumatologist and every single one said that in their experience, it did not work for AS or spinal disease in axial SpA.

Unless the pharmaceutical company is willing to fund trials with a higher dose - like 90 mg every 4 weeks, we just don't know. It may work for certain patients, but so far the evidence shows that it does not work - the study was terminated for axial SpA/AS.

JAK inhibitors and IL 17A and IL 17F inhibitors are what's coming next for AS - they are seeing very good results. IL-23 inhibitors also failed for axial disease, which is why I think Stelara is unlikely to work for most AS patients.


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## Jo-mom

OMG you are really informative and thank you so much for this information.  My son had MRI on all his spine and the Si joint shows some erosion, and both hips have arthritis.  He has been going to physio 3 x a week for 7 months now and that has helped, however, when he started Remicade late September, he instantly was walking much more easily.  The rheumatologist didn't actually indicate he has AS, but she did say that we caught it early enough to treat it from getting worse, but it would have been better to get it earlier, or course.  We lost almost 2 years with first the chiropractor, and then waiting for neurologist appts as the family doctor thought it might be neurological.  It was only because he could no longer walk and tore his groin muscle that we found at at emergency via xrays that he had arthritis of both hips.  It was daunting, and then the crohns which he had mostly asymptomatically for years - probably 5 years at least as he never went through the stage of eating a lot, and never had a very huge appetite.  Remicade has been helping.  I can't believe what you must be going through having your family with AS and IBD.  You are very knowledgeable and thank you for sharing.


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## Jo-mom

Oh, as well, my son was negative for b27 and the rheumatologist indicated that it was the IBD that was probably first and then came the arthritis, although the arthritis presented itself first. I have read on enteropathic arthritis and often this is the case.  I applaud you on all your knowledge and thank you again for sharing.


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## pdx

Hi Jo-mom. Sorry to hear that it took your son so long to be diagnosed. That's common with kids and teens, unfortunately. 

My daughter also started Remicade right away after her Crohn's diagnosis, and, like your son, the initial dosing wasn't enough for her. Her doctor reduced the dosing interval from 8 down to 6 weeks, and also added budesonide (an oral steroid) and methotrexate. My daughter was also already on EEN at that point, and she continued on that. With all those changes, my daughter started to do better, and after a few months, she was able to drop the budesonide and EEN. She still takes methotrexate, and she has needed an increased dose of Remicade several more times over the years, but it's still working for her 4 years later. 

I've never heard of repeating the loading sequence, but I think it's likely to help in your son's case. Hope the new dose works well for him.


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## Jelly loves Peanut butter

Welcome Jo-Mom my son is 12, he wa diagnosed with crohns age 9 and juvenile spondyloarthritis age 10.  He started on 6 mp initially then switched to remicade and methotrexate because of the JSpA diagnosis.  After the crohns diagnosis he continued to have elevated sed rate and joint pains for months.  GI doc kept saying it was arthritis due to crohns but he wasn’t having GI issues at the time.  Maya and MLP really encouraged me to get a rheumatologist consult which was the best decision ever. His MRI also showed erosions on bilateral SI joints.   Looking back, we noticed him walking different and wanting to rest a lot during soccer.  He said his legs bothered him but we thought it was just growing pains. So I’m not sure if he had arthritis or crohns first but not sure if that matters too much.  After only a couple remicade infusions his sed rate normalized and joint pains disappeared!  It was like a miracle!  After loading dosing he received remicade every 4 weeks and weekly methotrexate.    After being symptom free and normal sed rate for a few months then remicade was decreased to every 8 weeks and we continued weekly methotrexate.

He has only had one set back in sept2018 had a ruptured appendix and so after surgery needs to be off his meds.  He was off remicade for 11 weeks and started to get the achy legs again and sed rate was back up in the 50s. He just had remi end of December and next infusion is February so I am hoping to see that sed rate come down.

How often does your son receive remicade? Maybe he needs it more frequently.  Does he take any other medications for crohns or arthritis?

Sorry your son is going through thisI’m glad you joined the forum.


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## Maya142

Please ask your rheumatologist before seeing a chiropractor!!! They are NOT recommended for people with AS or axial spondyloarthritis. They can really hurt patients because they are typically not well-educated on AS (patients have inflexible or less flexible spines and often low bone density) and they can cause a lot of harm.

As for what came first, honestly, it's hard to know. It's a chicken and egg situation. I used to think that my daughter's arthritis came first but now I'm not so sure - she always gut problems - had trouble gaining weight, had diarrhea on and off. Her symptoms were mild and on and off, so her pediatrician always said it was a virus.

My girls are HLA B27+ though.


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## Jo-mom

Thank you for your replies!  My son will now be on 4 week infusions with remicade and is also taking 3 mg of budesonide as well.  He is doing well now, and my son was also walking funny into his teens but we thought it was just how he walked, and also would mention that his one leg hurt, and it wasn't consistent and we too thought it was growing pains.  Wow!  If only we knew what we knew now.  He is pretty happy now because he is able to crouch again and climb stairs and walk normally. He was struggling walking last year and attending university is difficult if you can't walk around campus.  Things are much better.  The dosage for remicade is still being figured out.  He had 3 loading doses, and couldn't make it to his first maintenance dose - had a major flare (he never had one before) - and ended up doing infusion 3 weeks earllier.  Blood test revealed remicade was almost gone from his blood so doctor now ordered new loading doses, and then 4 week intervals.  I believe it will be at same dose for now.  Nothing makes me happier than knowing he is happy.


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## LpWhite1001

Hello, Jo-mom!  I'm afraid I don't have great info like the rest of this learned group  but I just wanted to let you know you are not alone out there!  My son is 22 and was dx with Crohn's in summer of 2017.  It is such a daunting disease and so hard on the sufferer AND the family!  He also is on Remicade (ever since his diagnosis) and according to his doctor is in remission but he still is in moderate pain every day.  

His doctor put him on 2 different rounds of steroids...wish I would have known how nasty that stuff is!  He's been off of them for almost a year and he is still overweight from them!  Which is ridiculous because he is able to eat only one meal a day usually.  

So just wanted to warn you about the steroids!

Yes, if I could trade places with him, I sure would.  

Take care!


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## Maya142

I would also caution you about steroids. Budesonide isn't treated like a "real" steroid by GIs but it is one! Our GI used Entocort as a maintenance med. Additionally, my daughter was on low doses of Prednisone and Medrol over 5-6 years (one long course of steroids per year pretty much) and at the time, was on 9 mg Entocort and 12.5 mg Prednisone.

She developed Cushing's syndrome - rapid weight gain, puffy moon face, stretch marks etc. In addition, she developed adrenal insufficiency which can be fatal. We saw many endocrinologists and had to rush to the hospital several times to get her IV steroids to prevent an adrenal crisis. Our endocrinologist said most rheumatologists and GIs use steroids too liberally and do not taper slowly enough.

I wish I had known about adrenal insufficiency as a risk of steroids, but I don't know if we could have avoided steroids anyway -not without risking more joint damage.

Jo-mom, the other important thing with AS is exercise. It's really important that your son stretch daily and do some aerobic exercise. It can be low impact - swimming is great. Biking or using an elliptical are good options. Strong muscles support joints better which equals less pain. Physical therapy can really help if he does the exercises regularly. It helps to start with someone helping you and then transition to doing the exercises on your own.

One rheumatologist summarized it to my girls: "Use it or fuse it."


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## Jo-mom

Thank you Maya - yes my son now goes to a physiotherapist regularly - no more chiropractor.  I also read that they are not recommended with AS.  And I hear you - chicken or the egg.


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## Jo-mom

I read up on steroids and adrenal insufficiency.  My son is on only 3 mg of Entocort (steroid) and I am hoping that he can get off that once his remicade levels are better.  Interesting, we tried tapering him from one a day to one every other day, and he noticed right away that his bm's changed, and instead of things getting back to normal, at the same time, remicade levels were leaving his body sooner than normal, and he went into a flare.  We thought it was because he tapered his budesonide, however, learned later it was the remicade levels.  I couldn't wrap my head around why tapering so slowly would be so drastic.  We definitely learn through these experiences.  



I also learned about how important stretching and exercises are for AS.  My son goes to physio 3 x a week where they do exercises, and he does stretches at home on most of the days he doesn't go, however, he could be a little more active!  He is an adult (20) and you can only nag so much.  At least he is doing something and is walking more.  



You must have many days of anxiety with your two daughters.  How are they doing these days?


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## Jo-mom

I want to thank all of you for being so supportive.  You are all such a wonderful group.  This forum is far the best I have come across!  It sounds like you are all moms here...  No dads?


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## Jo-mom

I have a question - for those of you who have children who were successful on Remicade, was the success always consistent, or were there sometimes small setbacks, or slight symptoms or increase in bm's, appetite loss, the usual stuff at any time even while doing well on Remicade overall?  I realize sometimes frequency and dosages can be changed, but I am asking for those who were on a set schedule that seemed to work - if there were sometimes setbacks, mini flares.  Just like to learn as much as possible.  Thanks


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## crohnsinct

Yep!  Bodies change.  Remicade is a large molecule drug and our GI explains that it changes a little over time.  Lots of bobbing and weaving here for both my girls with a total of 11 years on Remicade.


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## Maya142

I think it depends on how often symptoms are occurring. If out of the blue, your kiddo has two days of belly pain and or two days of diarrhea, I would watch and wait. If it gets better by itself, I wouldn't worry. We'd call it a "mini-flare" or blip and move on.

If the kiddo continues to have symptoms then we update the GI. 

If it's hard to tell because symptoms come and go, then keep a record of them. If it's happening consistently, it could mean your son needs a higher dose of Remicade or an increase in frequency. 

But generally I'd a couple bad days here and there aren't too concerning. As long as there isn't fever or bleeding, I'd watch.

This is a good question for your GI because the instructions on when to call/email depends on the kiddo's situation. For example, my younger daughter is on two biologics so we are extra cautious if we think she has an infection - I'd take her to Urgent Care or the ER a lot faster than I would for my older daughter on one biologic.

So I would ask your GI about this.


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## Jo-mom

My son has infusion this Friday and had his last dose almost two weeks ago. His appetite is good but I noticed he's using the bathroom more. I don't want to pry and ask him what's going on as he seems to be well, but I just thought to ask you experts.  It could be as simple as him having a little more fibre yesterday, but you know how it goes, you start over-thinking.  I guess I am thinking ahead and wondering if he will make it to 4 weeks after this Friday's infusion.  I shouldn't get ahead of myself. One day at a time.  



I didn't realize that you could be on two biologics at one time.


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## Maya142

It's still pretty unusual- doctors try not to use them unless you have failed everything else. My daughter had failed everything available that treated both her Crohn's and arthritis. Her arthritis is fairly severe (she will have a joint replacement this year at 22), so we switched to a biologic with a different mechanism to treat the arthritis and then added an anti-TNF for Crohn's.

But she had really no other options - she had failed everything else. Luckily, the combination of two biologics seems to be working for her - to some extent, anyway.


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## crohnsinct

Yeah, I think the "two biologic" use is really more to treat two different conditions if one is not responding well.  My older daughter might try two biologics because her psoriasis is just not responding at all to Remicade, as a matter of fact there is a theory that Remicade caused it.  

We totally get the paranoia when things pop up.  Stomach issues are very common in the general population so it could be anything.  We generally just watch and note.  Does he get labs at every infusion?  Fecal calprotectin?  Is there a lab that correlates well with inflammation for him?  For both my daughters blood labs aren't that telling but fecal calprotectin is pretty reliable.  So if that goes up, then we know something is going on.  They get fecal cal with every infusion.


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## my little penguin

Same here 
Two biologics but completely different conditions 
Not both for Crohns 
Ds has a very rare condition which requires its own biological med since the pathway is so different from the pathway for Stelara 

Lots of “blips” here for a day or two 
Also since he just started every 4 weeks it will take a while to build up and stay on top of things (as in a couple of infusions )


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## Maya142

I have seen trials of two biologics for refractory Crohn's and colitis - usually Entyvio with something else (Humira, Remicade). I don't know if there are results yet though.

I know for severe RA, dual biologics have been studied. Using two biologics at once ups the risk for a "severe adverse event" - like a serious infection. And in RA, the benefit of using two at once is not clear. 

It will be intersting to see results in IBD.


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## Jo-mom

Hi my fellow parents - just sitting at Tim Hortons (big in Canada) waiting for my son who is getting his remicade infusion - another loading dose .  He is slowly gaining weight and maybe one day will weigh more than me.  I weigh under 127 lbs by the way!  He is 20 and has never weighed more than me but I think he is getting very close finally.  Let's hope this continues.  He started Remicade weighing 108 lbs. (3 1/2 months ago).
So I am always a little anxious on the day of his infusions (it's getting better) - I think I read too many negative forums where people posted their reactions, but I have to remember that people who do well don't usually vent or post.
I have no questions, just filling my time with people who have been there, done that.... You guys are experts and have gone through so much with your children.  I can't imagine having more than one child with a chronic illness.  I am not normally a worry wart but I have become the biggest and ugliest wart ever!  He's an adult but I feel like I am back at when he was a newborn.  I am certain my middle-age anxiety will subside...."worry" - is such a wasted emotion.  :shifty:
Thank you for listening my fellow carers of people they love.:heart:


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## my little penguin

One thing that really helps is “shakes “ in addition to food even on remicade 
These can be diet shakes etc...
It’s just extra calories that’s easy to absorb 
Tesscom “child” is in his 20 and used shakes

Some adults use boost or ensure 
Just gets the extra nutrients in plus food to gain weight 
Between biologics and neocate jr/peptamen jr my kiddo has gained 
Over 110 lbs (now 155 lbs at age 15 ) and grown close to 12 inches (he was dx at age 7 only weighed 50 lbs for close to two years prior ) 

So big fans  of biologics here 
Plus “shakes”


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## pdx

Hope the infusion went well! (I often check the forum during infusions too!) 

My daughter has gained 60 pounds since diagnosis, while on Remicade, so I hope that your son has similar success. She was never able to drink shakes, but she used formula through an ng-tube for 5 months at the beginning, and it really helped with her weight gain.


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## Jo-mom

Yes the infusion went well and I dropped L at university right after.  He has gained about 17 lbs in the last 3 1/2 months so is doing well.  The fridge does have ENSURE plus but he doesn't want to drink them because he claims he is eating and drinking enough (which is true).  Found out that he yet has another loading dose in 2 weeks and then every 4 weeks after that.  I guess the GI doc wants to ensure he gets enough Remicade in his system.   I will let you know when he finally weighs more than me!  LOL!
Glad to hear that all your kiddies have done really well on this medication. :ybiggrin:


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## Tesscorm

Glad it all went well!

Another idea for extra calories...  if you google Boost Recipes, their site has a number of recipes using Boost shakes (I'm sure you can use Ensure).  I haven't made any, so can't really vouch for them but, from what I remember, most were baked goods (muffins, etc.)


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## crohnsinct

Just a word of caution with weight gain and Remade.  Remade is dosed based on weight i.e.: 5mg/kg all the way up to 10mg/kg. However, the GI's order the total amount and usually round up or down to make a complete vial. 

So with a good deal of weight gain and no change in total med dosing, you could actually end up getting less drug than what you are supposed to.  It has happened to quite a few of us where the kids gain, gain, gain and the GI's forget to change the total amount ordered.  Easy enough to monitor by asking the nurse what the total dose is and then down the math.


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## Jo-mom

Thank you - so far, L is weighed right before his infusion and the calculate the amount based on his present weight so I believe they are giving him exactly what is needed.  I appreciate your post.  
You guys all rock!!!!:heart:


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## my little penguin

They calculate the amount and weigh prior as standard procedure 

But ... then based on the weight the Gi rounds up to the next vial 
Or down to only one vial .
So they don’t waste meds 
There is a window of weight where this happens 
Abive that your at two vials vs one vial if that makes sense 
You need to ask how many grams he is actually getting 
And his weight in kg


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## Jo-mom

Thank you - I will ask about this.  I'm learning a little more every day.


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## crohnsinct

Just wanted to add that typically the weight the day of the infusion is usually too late for the orders to the pharmacy unless the nurse or med assistant who weighs him, then contacts the GI and then GI writes up orders and sends to pharmacy.  

The orders are usually written up and sent to the pharmacy before you even step foot in the center.  

Perhaps the nurses double check weight against what was ordered and if it causes the mg/kg to go down they call the GI and alert them but usually this isn't the case.


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## my little penguin

When ds was on remicade 
The orders were not entered and sent until after the weighed the kiddo 
And you had to wait on the pharmacy to create the Iv bag 
Took a lot long but ....
Weight was day of infusion to determine vi 
Did the same thing for other infused drugs as well


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## crohnsinct

You were spoiled!  We have been to 4 different hospitals and none of them ordered based on weight day of.  The closest we came to "day of" was at our current hospital and they just didn't call pharmacy and request meds to be sent down until you actually walked through the door (just in case you didn't show up. guess) and even that takes FOREVER!  This hospital does rapid (1 hour) infusion.  Still takes 3+ hours start to finish and they don't even have to wait for Doc to enter the orders!  In CT, they had the drug waiting for us, no rapid infusion and we were in and out faster than the rapid centers!


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## Maya142

At our hospital, the way it was ordered was using the weight from the child's last visit - which is not always accurate! My daughter once lost a significant amount of weight between infusions. She was on 10 mg/kg of Remicade and due to CDiff. she lost like 8 lbs very quickly. So if they had used the weight from the past visit, she would have gotten more than she should have. It wouldn't have hurt her, but we did inform the nurse, who had to get a new order from her GI which took forever...

I have no idea on how many vials were used - I always assumed kids got the dose prescribed by the doctor. So if my daughter is 43 kg, would she get 430 kg or 400 kg if you round down?

I don't know what the system is now since she has been off infusions for several years. But I would hope it's better than using the previous visit's weight since most kids only see their GI 3-4x per year and some can even just see their GI every 6 months. And of course, kids are growing machines, so a kiddo who has a growth spurt could easily gain 20 lbs in a year.

Wanted to add - my daughter has a long and complex history regarding weight loss and was severely underweight for a while. We added tube feeds and they made a world of difference! She said she had way more energy and she slowly started gaining back the weight she had lost. She even continued tube feeds into college and her roommates were very supportive. 

She was a teenager when she started tube feeds - I think about 17. She absolutely refused to and let her weight drop further and further. Her story is on the forum somewhere, but anyway, it led to 1 new diagnosis (Gastroparesis or delayed gastric emptying), 3 hospitalizations, and every kind of feeding tube that exist (I think) - starting with a NG tube, NJ (naso-jejunal), GJ (gastric jejunal) and then finally separate G and J tubes, which were surgically placed in her stomach/ jejunum (middle of the small bowel).

She was very sick by the time she finally started tube feeds, and they made a HUGE difference very quickly - she felt better getting nutrients she needed and even just getting more calories. She had more energy, became stronger and slowly gained the weight back.


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## pdx

When we used to go to the children's hospital for infusions, E's prescription was written in mg/kg, and they would weigh her right as she arrived and then use that weight to determine the day's dosage. It took a while (maybe 45 minutes) to get the Remicade due to that. Also, they would round to the nearest quarter vial (or 25 mg), which was great. I assume that they would use the rest of the vial for other patients that day, rather than just tossing the rest, but I don't know.

We moved to the adult outpatient infusion center once E turned 13, and their procedure is different. Her Remicade prescription in the pharmacy isn't actually weight based there--it's just a total. Her GI sets a total dosage (which she does calculate based on her weight), and that's what E gets no matter what her weight on the day of infusion. As she has gained weight, or flared, her doctor sets a higher total dose. We see her doctor every 4 months, so it hasn't been a problem to keep the dose appropriate to her weight. When we first started there 3 years ago, they had just started serving kids, and the pharmacy would only round to the nearest 100 mg. The pediatric GI's requested more control over the dose, and now they will do 50 mg intervals. I don't know what happens to the other half vials--if they are tossed or used for other patients.


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## Jo-mom

Hi everyone - warning - this will be long.... I want your opinion on this one.  I called the GI's office twice and sent two emails and hopefully I will get an answer or an appt although this is not an urgent matter.  

My son is currently reloading with remicade - due for last reloading January 28 (these reloads were closer together - 2 weeks apart) and then he will be on a 4 week cycle.  Currently he is taking 3 mg (one capsule) of Entocort as well.  Here is some history - when he started with remicade, he was on 2 caps (6 mg) Entocort.  About 10 days after his 2nd infusion of remicade (end of October) - he dropped from 2 caps to one cap and one day later, he immediately noticed the difference with his BMs (looser and more often) - however, it seemed to get better a few days later, and then things got worse. We didn't know it at the time, but he was beginning to flare, however, his 3rd loading dose of remicade was going to happen and as soon as that happened, everything was good again.
So at this point, he is on one cap of entocort only, and now it was time to drop it and since he reacted the last time he tapered, I called the pharmacist and he advised one every other day would be a good idea this time.  So this was 2 weeks after his 3rd infusion.  Again, 24 hours later, L noticed BM change, nothing major, but things didn't get better, they got worse, and we kept thinking it was because his adrenals had to re-adjust, and didn't realize at the time that he was metabolising the remicade too quickly..  So we are now just over 4 weeks away from his 4th infusion (at this point he was scheduled for 8 week interval) - and symptoms were getting worse. This is went we called the GI who was in Pakistan for a month, but through his support staff, his infusion was moved 3 weeks earlier, and the blood test revealed hardly any remicade in his blood.  

Let me point out that the GI ordered him to go back on full dose of entocort just before he went in for that emergency infusion, however, we told him that L never did well with the full dose (3 caps) - and basically L went back to only one cap instead of one every other day.
So now he has reloaded a few more times, going in on January 28 - and not sure if he should taper off that last capsule of Entcort. Things are going so well at this time.  I will try contacting GI again but thought I would ask you guys.
He has been on Entocort for 4 1/2 months total - one cap for the last two months.  My thoughts are since he has infusion on January 28, perhaps taper to one ever other day a week before that infusion, or should I just wait for GI's instructions. He never did say how long to continue taking it.  Am I worrying too much - will a few weeks more of one cap daily really be that harmful?  I really don't want a repeat of what happened last time.  Should we wait for his first 4 week cycle (7 weeks away) - when he gets blood test to see how much remi is in his blood?  I would assume the GI would have instructed us by then.

What are your thoughts?  Again, L is doing great right now.  I will call GI later today - they seem to be lax in getting back and that is frustrating!:rof:


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## Maya142

> My thoughts are since he has infusion on January 28, perhaps taper to one ever other day a week before that infusion, or should I just wait for GI's instructions. He never did say how long to continue taking it. Am I worrying too much - will a few weeks more of one cap daily really be that harmful? I really don't want a repeat of what happened last time. Should we wait for his first 4 week cycle (7 weeks away) - when he gets blood test to see how much remi is in his blood? I would assume the GI would have instructed us by then.


I doubt a few more weeks will hurt. It's really when you use steroids for the long-term when it's an issue. I know there are some GIs that use Entocort as a maintenance medication and we did do that too with my daughter. However, for reasons I explained earlier (she developed Cushing's and adrenal insufficiency, which can be fatal and low bone density), it's not a good idea. Any endocrinologist will tell you that it's certainly better than using long-term Prednisone but at the end of the day, Entocort is still a steroid.

I would much more concerned if your GI was planning to use Entocort in the long-term - like for years. But 7-8 weeks more probably won't make a difference in terms of adrenal insufficiency. 

I would check with your GI on what he wants you to do, but to me it makes sense to taper only after he's had the infusion and it has kicked in.


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## Jo-mom

Thanks Maya - I was thinking the same thing.  Actually his first infusion after Jan 28 is not 7 weeks away but 5 weeks away from today.  I think it's best to wait for GI's instructions on this one.  



:dance: I love these emoticons - I feel like a super banana mom!


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## crohnsinct

I agree with Maya!


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## Jo-mom

Thought I would update you on what the GI said.  We just came back from seeing him today.  He told my son to stop taking Entocort now.  He also said that L's bloodtest revealed almost no remicade in his blood and he  believes that because his colon was very inflamed, that the remicade was being used more quickly.  As mentioned before, he is reloading and the final one is on Monday, and then every 4 weeks.  We will continue with the 4 week cycle at regular dose and hopefully that will continue to work.  The GI will check levels of Remicade again in 6 months to see if changes need to be made.  



Fingers crossed the dropping of Entocort goes smoothly, and fingers crossed that he can last the ful 4 week cycle without any reoccurrence of symptoms.  He is doing really well at this time.  Thanks for listening.


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## Maya142

I'm glad they are trying more frequent infusions - fingers crossed!! I hope he is able to get off the Entorcort soon!


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## Jo-mom

Yes, tomorrow is the first day without taking Entocort.... I just hope that it goes well -- timing for infusion is good as it is on Monday so his body will have full force remicade and I guess dropping Entocort right now is good timing.  We'll know more in time.  Hopefully his insides have been healing since that horrible setback in early December.  :thumright::rosette1::ybiggrin::ybiggrin::ybiggrin::ybiggrin::ybiggrin::dusty::dusty::dusty:


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## Jo-mom

So I am sitting at Tim Horton's again waiting for L to finish his infusion before dropping him off at his university.  He stopped taking Entocort yesterday and I noticed he had a few trips to the bathroom early this morning.  He didn't want to share anything with me when I asked - he wasn't in the best of mood - but said he was "fine" - that word never means "fine" when people use it.  Anyway, he is getting a fresh dose of Remicade and hopefully the withdrawal symptoms from the Entocort will subside quickly.  Everytime he has dropped it down, he has this very same reaction, so hoping his body needs to readjust for a few days.  At least we know that he has enough Remicade in his body as it is happening now.  Next infusion is 4 weeks.  I hope that he can have a good 4 weeks.  Has anyone any experiences with withdrawal of Entocort?  I tried searching on this forum but for some reason, it isn't working.


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## pdx

My daughter has been on entocort twice, both times for about 3 months. She tapered off slowly and never had any symptoms as she tapered. I hope that your son's Remicade infusion today will help with any symptoms that he's experiencing.


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## my little penguin

Some are more sensitive to steroids than others 
Entocort withdrawal can be the same as prednisone withdrawal 
Sometimes a day or two is needed 
Other times only one dose of steroids and adrenal insufficiency 

Ds gets headaches body aches stiff joints(he has arthritis )
Crohns symptoms /sweets syndrome symptoms 
And it’s not pretty for two days 
Third day he is improved and day four things level out 
This anytime we lower the taper dose of steroids
We call it the steroid toddler temper tantrum 
His body wants to stay at the level of steroids 

He does have adrenal insufficiency but during his last big wean we didn’t know that part 
He does much better now with weans since we wean the prednisone then wean to a stress dose of hydrocortisone for 3 days then off
Far less side effects


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## Jo-mom

PDX, how slowly was the taper?  L was only on 3 mg Entocort.  Let's see what the next few days bring.  His adrenal glands need to re-adjust.  I don't like steroids. 



Thanks guys!:thumleft:


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## Tesscorm

I hope it goes well!  Fingers crossed! :ghug:


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## pdx

Jo-mom, she actually tapered faster than your son. She was on 9mg for about 3 months, and then went to 6mg for 2 weeks, and then 3mg for 2 weeks, and then done. One thing that might have helped her with her first taper is that she had just done a course of EEN, which can also do a great job of reducing inflammation. 

Her second course of entocort was used during a flare, but she was in much better shape that time compared to when she was diagnosed, so that might have made that one easier for her too. 

I am no expert on steroid withdrawal, but I think there can be 2 different things going on during a taper. One is actual withdrawal, where your body has reduced its own production of cortisol due to the presence of the steroids that you're taking, and you need to give your adrenal glands a chance to ramp back up. The other is just when your intestines are still not healed, so when you go off the steroids (which were reducing inflammation), you get Crohn's symptoms again. If your son is just experiencing more bathroom trips, it might be the latter. 

If it is the latter, he may want to give EEN a try, because--like steroids--that can reduce inflammation in the short term while you wait for Remicade to kick in.


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## Maya142

You can taper slowly with Entocort. My daughter was on it for a long time and when we tapered, we did 3 mg per month. For the last 3 mg, she went from taking it daily, to every other for a little while. Then we stopped.

But you can go even slower than - you could do every other day for 2 weeks, then every 3 day for two weeks and so on. 

My daughter developed adrenal insufficiency after being on Prednisone on and off for 6 years and Entocort for over a year. It can be very serious, so if he continues to feel "off," his GI needs to know. Adrenal insufficiency is hard to identify sometimes because the symptoms overlap with Crohn's symptoms. My daughter's symptoms were severe fatigue, diarrhea, nausea etc.

She now tapers from any steroids on to hydrocortisone and then tapers off that. Her cortisol levels and ACTH are monitored carefully.

But before she was diagnosed, and we tapered more quickly, she did have withdrawal symptoms. They typically they lasted 2-3 days and then she stabilized. Each time we went down, she would have symptoms, but as long as she stabilized after a few days, we continued with the taper.


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## Jo-mom

Thank you both - the GI said just to stop taking it completely as he was already taking 3 mg for awhile.  We will see how it goes...since he had his Remicade infusion today, I'm hoping he will settle in his normal in a couple of days.


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## crohnsinct

I would keep an eye or rather ear (since he is distant from you) on him.  Bathroom symptoms caused by adrenal insufficiency will not resolve with Remicade.  My daughter has also had some issues with tapers that were too sudden or quick but like the others have said if it is just a day or two the it is fine.  Any longer or more severe and I would ask him to get in to be seen for possible adrenal insufficiency.


----------



## Jo-mom

Thank you - today was a good day, and for sure, I wouldn't want to let too much time go by if things weren't okay.  Let's hope the good days continue......forever!!!!


----------



## Jo-mom

So my son had his last remicade infusion 3 weeks ago and is due for another in one week.  This would be his first 4 week cycle after his re-induction of remicade.  He couldn't make it to his first maintenance dose of 8 weeks and had a rushed infusion at 5 weeks after a major flare.  He had re-induction - 0, 2, 4 and now at 4 week cycle.  A couple days ago, he told me his appetite is still good but isn't feeling as hungry, and that his bm's have changed a bit - still formed but starts off watery and then formed.  I was planning on moving his infusion to this Friday as he is on Reading Week and won't have to miss school.

 He just told me now that there was a little blood in his bm - just a little he said.  My heart sank.  I will call GI tomorrow and I am hoping they can test his remicade levels again.  When they checked last time (before his re-induction) - I wasn't told the number but they said he hardly had any remicade in his system.

 So, L is feeling good - still eating well - not having many bathroom runs - but obviously things aren't 100% (change of BM's and one blood in stool incident) and I'm really worried.  He is no longer on Entocort and currently on 5 mg/kg Remicade every 4 weeks - although we haven't even gotten to the first 4 weeks.

 Remicade is really helping him - he has gained almost 20 lbs and it has really helped his arthritis tremendously.  I believe his dosage needs to be increased.  I know things still can be tweaked, and medication added.  This is the kind of thing that will really affect a good night's sleep!


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## pdx

Try not to worry too much yet--it is still very possible that Remicade will work well for your son, once his intestines finally are healed. I know I sound like a broken record, but EEN is something that can really help to jumpstart healing, and then Remicade can take over. I know that EEN is easier for a kid than an adult like your son, but have you talked to him about it? 

Another thing that might help is adding methotrexate. Has his doctor talked about the possibility of combination therapy? And, as you mentioned, increasing his Remicade dose could also help. 5 mg/kg is the lower end of dosing--that could go up to 7.5 or even 10 mg/kg. 

I hope the infusion this week helps!


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## Jo-mom

I will try to get hold of GI today although it's always a challenge.  He never mentioned combination treatment.  I am hoping they can test his blood levels so he can go from there.  



How does the EEN work?  I have read many forums where it is mentioned.  I really don't like L taking steroids, and he only has been exposed to Entocort and even that was not something we were comfortable with.  I am worried that steroids could harm his osteoarthritis hips further.  



Today is Calprotectin test sample day (never has had one before) - the GI ordered that when we saw him a  few weeks ago and suggested doing it closer to the infusion date.  How did you parents do this for so many years - I know it's easier.....:ybatty:


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## my little penguin

Een
Is formula only 
No solid food
GI can give you samples of formula 
Then they write a script for x number of cans per day to meet nutritional needs 
Some kids drink it all by mouth 
Others use an ng tube at night and pull the tube in the morning 

Most with crohns need semi elemental (peptamen or peptide )
Vs elemental (neocate jr ,vionex(adult) or elecare )
Elemental tastes beyond foul most need a tube 
Ds drinks neocate jr orally as supplemental 50% calories plus food daily 
But has switched over to een with it more than once 

Een typically is 6-8 weeks no food 
Then 90/10 as maintenance (90% formula -10% food) 
When no other drug is used


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## Tesscorm

Jo, hope you were able to move aptmt!  And that L is holding up, ie no more symptoms!

EEN is not easy to do...  not discouraging it's use at all, I think it's a great treatment option but, in some ways, I do think it's easier with children as we have more control over their environments.

S did do it at 16/17 years old.  He inserted the NG tube each nite, ingested all the formula overnight and removed tube upon waking.  During the day, he was allowed clear fluids - would take broth to school in thermos to 'eat' with friends and school kept freezies for him in their freezer.  In the evening, he had more broth for 'dinner'.  He doesn't like jello but was allowed to have that as well.  But very tough to manage around social situations.  And, he was hungry by early evening - distraction (or more broth  were the only options).  No one ever suggested it but, perhaps a semi-elemental shake to offset the hunger would be allowed??


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## Jo-mom

Update - L does have infusion this Friday - was able to move it with no problem as I think you can go a few days either way - it made sense for more than one reason.  His symptoms have not gotten worse, if anything, he was very hungry yesterday, and he doesn't appear to be going to the bathroom more than usual - all good (although I think things are little off when he goes).  I did call the GI office yesterday to discuss running a blood test before his infusion.  The staff there said to call back on Thursday (tomorrow) as the GI will be in the office and I can easily pass a message to him.  

 I do think he is doing better at this time frame than when he reached this point of time before.  

 Yesterday we dropped off cal-protectin test so we'll see what the numbers are like on that.  He's never done that test before.

 So things aren't too bad.  We'll see if I can get in contact with GI before the infusion.  I'm not as worried right now.  I guess knowing that infusion is only a couple days away and seeing that he is feeling and doing rather well makes the difference.

 Thank you.


----------



## my little penguin

Ds did his first een it was semi elemental 
No tube 
He drank two peptamen jr for breakfast. Took two to school for lunch in a thermos 
One after school 
Two for dinner 
And one at bed 
So in his case he wasn’t hungry at all during the day 
Chewed ice and had dumdum lollipops 
Pure sugar on crushed ice to chew as well 

That’s it 
Still hard 
He was only 7 so he didn’t think he had a choice 
This last time he was 13 so he spoke to Gi 
And agreed to calm his gut with een for 2 weeks 
And then add bits of food 
So way different for teens and young adults


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## Jo-mom

Thought I would update you on my son. I really dislike how this disease changes your life.  I've become a little anxious since L's diagnosis because things can be going along well and then something changes quickly.  L is currently on 5 mg/kg Remicade every 4 weeks.  I have now noticed a pattern.  He does well for 3 weeks, and then I can see how his appetite decreases and his bathroom visits change.  Once he gets his infusion, he is back on track, and then it happens again.  last month, I called a few days before his infusion to let the GI know - asking perhaps for a blood test to check his levels.  He also had a fecal cal protectin test done but never heard back from GI on that so I am assuming it wasn't terrible, but who knows?  What's with these doctors.  So yesterday I called the GI doctor again, and the staff told me to send an email to their clinic and they would forward it to the doctor.  I am wondering if he actually got the last message when i called last month.  In the email, I suggested that L might need a higher dose - perhaps 7.5 mg/kg would do the trick for the 4 weeks.  I think so.  I always get anxious when that 3rd week approaches, and L shouldn't have to go through symptoms although he said he can tolerate it.  So hopefully something happens.  Overall, he is doing better but not 100% and tomorrow is the infusion and it can't come soon enough.  Last time, I had it moved up 3 days because he was off school, but this time it wasn't  Those extra days make all the difference.  So I just needed to share because I had one of those nights of tossing and turning.  He was tired earlier the last two nights and everything worries me these days.  This is why I joined this thread - appropriately named.


The infusions are also helping with his arthritis and that continues no matter how it doesn't always work 100% for his crohn's.  I really do think that an increase in his dose will take care of that.  Let's hope the GI does too.  So frustrating that I can't just talk to him easily.  I feel like I am disturbing the office when I call although they don't make me feel that way.  



Thanks for listening.


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## Tesscorm

7.5 mg/kg certainly isn't unreasonable.  Lots of kids and adults are at 7.5 or even 10.  Hopefully, the GI agrees.

As far as emailing his GI...  personally, I think this is great!  This is how I've communicated with S's GIs (both ped and adult).  I've always believed (although I can't verify 100%) that any communication, such as an email, must be included in the patient's file.  As such, I've always felt assured that the GI would see any message I sent.  Plus, I don't go through the stress feeling that I'm being a pain in the butt everytime I call the office.  Communicating through email has worked very well for me.

Glad his infusion is tomorrow!


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## crohnsinct

Since he is good after infusion and then gets worse right before it definitely sounds like he just needs more med.  That is an easy fix.  Good for you detective mama.  

I also NEVER call the office.  Messages are too easy to forget, lose etc.  We always email.  The doc gave us his email and his nurse.  We usually email the nurse so if it is something easy she can ask him as he passes and just email us back.  If it isn't easy, she forwards it to him for his response.  At our new office they ask us to correspond through my chart so everything is automatically in the chart.  It is also just as easy.  

Would be nice if you could get that infusion amount bumped up for this one but you might have to wait a bit.  

I am not very familiar with your son's story but another way to deal with burning through the med too fast is to add Methotrexate.  It could slow down the rate at which the body metabolizes Remicade, help prevent antibodies from building up and treats the Crohn's and rheumy or skin issues.  That said, both my girls were on it and it didn't help them.


----------



## Jo-mom

Yes I do feel like a Detective Mama!  I am acutely aware of what is going on - sometimes too much so.  Thanks Tess and Crohnsinct.  I have been following your posts on your daughter Crohnsinct and really feel for what your daughter is going through and for what you are going through.  I certainly hope that she starts feeling better soon.  In a perfect world, young people should never have to deal with stuff like this!


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## Jelly loves Peanut butter

If I remember I think 5mg/kg is the lowest dose.   My son started at 8mg/kg every 4 weeks then moved to every 8 weeks and is doing well with that.  I think there is room for adjustment with your son just keep at it with the docs because sometimes they want to “wait and see” how things are.   Hugs to you and your son


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## my little penguin

Lowest dose is 5 mg /kg every 8 weeks 
Highest “normal “ crohns dose is 10 mg/kg every 4 weeks 
So he can go up easily in dose within standard dosing .
That said a lot of docs prefer to wait to see if the higher new dose takes effect 

Each time we raise Ds dose (remicade /humira and now Stelara)
It doesn’t last the full time at first 
But over time it slowly starts to last longer 
It’s weird 
Talking months of dosing 
It’s a balance 
How many dosing at the new for him higher dosing has he had ?
5 or more ?
Or only 1-3 ?
Good luck woth the Gi


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## Jo-mom

Interesting as L never made it to the full 4 weeks even when he was in the induction phase.  In the induction phase, dose 1 and 2, he was doing great - although he barely made it to the 4 weeks even then, and then when it was time to wait 8 weeks, this is when he flared at about week 4 (but symptoms began coming back in week 3) and he was pushed to an infusion 3 weeks early.  This is when blood test revealed he hardly had any remi in his system, so GI did re-induction again, but this time it was 2 weeks, 2 weeks later, and then again 2 weeks later, and then at 4 weeks.  That was last month and by 3rd week, some symptoms returned so because he was on Reading Week, it was in his best interest to move his infusion to Friday instead of Monday (3 days earlier) which probably made a difference.  I did contact GI office last month and passed message but never heard back.  This month, same thing, week 3, and the couple extra days that he has waited, there has been an increase in his symptoms.  We are about to leave for infusion in half hour.  He has already used washroom 2-3 times.  Seems that he goes most in the mornings.  I don't always want to ask what's going on, but I pretty well know.  So since I didn't hear back from GI again (sent him email) - I will be going to his office while L is getting infusion as it is only about a 10 min drive from infusion site and I have a couple hours to wait anyway.  I do really think that 7.5 mg/kg will make the difference.  I didn't realize that it takes a bit of time for new dosing to take effect.  

 Thank you my little penguin and jelly loves peanut butter.  I have to say that you mothers/fathers - although I think there are mostly mothers here, are a great source of information with all your experiences you have had with your kids.  I really do appreciate it.


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## Jo-mom

So much for my idea of visiting GI office while L was being infused.  I told him my plan and he felt strongly against it, so as he is an adult, I will respect his wishes.  So I am sitting at a coffee shop now.  L started experiencing nausea last  night - I'm certain he was starting a flare and thankfully infusion is happening now.   I think I will reach out to our remicade coordinator and see if she can get things rolling for next time.  The squeaky wheel gets the grease.


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## crohnsinct

Who said it is a parent's job to raise strong, independent adults....I say take that chapter out of what to expect when....and while you are at it put the midnight toilet diving chapter in or how about tips and tricks to get your kid to drink disgusting stuff (prep, MRE's, formulas etc). 

Crossing our fingers here that Remicade kicks in soon or that your son sees things your way.  Maybe if you have a chat with him and he agrees then he can send the email and will feel more like he is in control and it was his idea all along?


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## Jo-mom

You made me laugh!  As you know, L had his infusion this morning.  When I picked him up to drive him to university, he said that he can instantly feel it in his gut as soon as the infusion starts, so he pretty well feels better instantly.  That is always a relief but I will not put this task to rest.  I actually did suggest that he contact the GI himself via phone or email this morning, so reading your suggestion put a smile on my face.  Of course, you're a mom and know all the tricks.  I should sleep better for now.  Let's see how interested my son is with dinner tonight. :ylol:


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## Jo-mom

Okay, I guess the GI didn't ignore my email although timing could have been better.  The BioAdvance Coordinator (Remicade) -who I reached out to yesterday via email, emailed me today and said that the doctor ordered blood test to check remi levels at the next infusion.  That's 4 weeks away!  I wanted this done last infusion (Feb) and now we have to wait for April and then hopefully dosages change for May.  I emailed coordinator asking if it was possible to get blood test a week before next infusion so that if dosages need to be adjusted, that he can have the new higher does next infusion.  



Although L is feeling better, it's like he was starting into a flare a day before the infusion and his guts are recoooperating right now.  It is likely to settle in a couple days.  I reallly don't like this rollercoaster ride.  At least something is being done about it.  He noticed that I was typing away and asked what I was doing.  When I told him I belonged to a support group of parents with kids with IBD, he shook his head like I was a little cookoo.  I assured him that he was anonymous.


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## crohnsinct

LMAO!  Just wait until you tell him who your friends are....my kids think it is hilarious:  Dustykat, My Little Penguin, Maya142....sounds like we are secret agents. 

Well, I am glad they are taking notice although not as fast as we mama's would like.  The really good news is that he is responding and it looks like just a tweak is needed.  

I forget if we mentioned this here or not but inflammation sops up the drug like crazy and this is why at the beginning a lot of kids need to be infused more frequently.  As their insides heal you will find that you can start moving infusions farther apart or gradually lowering does a little.  Then if inflammation creeps back in you make a move.  My girls have been so all over the board with regard to dosage and interval that I have been known on occasion to forget the interval and had to have them check her chart.  Perhaps the GI is hoping that there is enough healing going on that he will make it to 4 weeks this time?  It sounds kinda early to me but I have to keep reminding myself that they are the ones with the degrees, fellowship training and years of experience with hundreds of patients.  :voodoo:


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## Jo-mom

OMG you made me laugh - those names do sound like spy names!  Jo-mom is the newest spy.


Yes the GI's are the ones that have the education and medical training and experience but they don't live with the daily ins and outs.  My gut is telling me that he metabolised the drug quickly right from the start - but I guess we can't tell a specialist that our motherly intuition knows more than they do!  ha ha


Let's hope he has a better appetite at dinner. When that comes back, I know he is better.  



Oh I should have invested in Royale or Cottenelle stocks.  I recently started buying the huge 400plus  sheets at Costco.  Did you go through a lot of toilet paper with your girls?  :rosette1:


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## crohnsinct

LOL!  Did and DO!  I have an Amazon automatic shipment of toilet paper delivered to O on the reg! 

O recently had a friend visit her from another university and this girl is under investigation for IBD...O said, "I better pick up some extra toilet paper".  

I also happen to know where every public restroom is in NYC, SF, Atlanta and LA...and we may or may not have stopped at constuction site porta potties after hours and given store clerks a lesson or two in Crohn's so they would open their darned locked bathrooms.  

When you need some levity go check out the Much Ado thread here in the parents section...pretty sure there is a "you know you are an IBD parent when" string of posts.


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## Jo-mom

Thanks for making me laugh and putting a smile on my face. I'm having one of those days where I feel so powerless and L's situation isn't even that dire, it's just so hard when things aren't "normal".  I know you understand this and have had many years of experience, as all your other "spy friends" do.


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## Jo-mom

Okay so I'm a tad confused.  What is the difference between metabolizing through a biologic quickly and building up antibodies? Are these two different scenarios or are they the same?  I thought that building up antibodies meant some sort of bad reaction - hives, lupus, etc, whereas metabolosing it more quickly meant just that your body needs more.   Enlighten me if possible peeps.


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## Scipio

Jo-mom said:


> Okay so I'm a tad confused.  What is the difference between metabolizing through a biologic quickly and building up antibodies? Are these two different scenarios or are they the same?  I thought that building up antibodies meant some sort of bad reaction - hives, lupus, etc, whereas metabolosing it more quickly meant just that your body needs more.   Enlighten me if possible peeps.


Both result in low drug levels but they operate by different mechanisms.

Metabolizing the drug, as it's name suggests, consists of the drug being broken down and/or excreted through normal metabolic mechanisms - usually broken down by the liver or leaked out into the large bowel and excreted in the stool, or some combination of both.

In the case of the formation of antibodies, the drug is being attacked by the patient's immune system as though it were a foreign invader.  The biologic drugs are large proteins and thus if perceived as "foreign" by the immune system they will stimulate the production of antibodies that bind specifically with the drug and inactivate it.  

This can get a little confusing because the biologic drugs themselves are antibodies, grown in culture outside the body, that are directed at some part of the immune system (such as TNF or integrin) with the goal of tamping down the overactive Crohn's immune response that is wrecking the gut.  So the anti-drug antibodies are actually one antibody that specifically binds with another antibody.  

The biologic drugs are usually either mouse antibodies and that have been "humanized" by recombinant DNA techniques or fully human antibodies.  Either way they still tend retain subtle characteristics that are slightly different from the patient's own proteins and thus might be detected as "foreign" by the immune system, stimulating the formation of anti-drug antibodies.   Keeping the drug concentrations in the blood high enough can often swamp out this relatively weak immune response and prevent the anti-drug antibodies from getting the upper hand. Similarly, adding azathioprine of methotrexate can also help prevent the formation of anti-drug antibodies by further tamping down the patient's immune system.   

Build up of anti-drug antibodies can result in hives or more severe adverse reactions in some of the more serious cases, but often anti-drug antibodies can quietly go about their business of inactivating the drug and clearing it from the blood with no noticeable effects.  Thus, often the only way to detect and measure these anti-drug antibodies is with a laboratory test.


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## Jo-mom

And here I am again - L is flaring.  His next infusion is on Tuesday where he will be given a blood test to check remicade levels.  He started feeling a bit off just two weeks and a day after his last infusion, but it was the same day he was studying for one of his final exams (which was the following day) - he felt a little nausea, and didn't have much of an appetite.  I chalked it up to anxiety/stress of the upcoming exam.  The following day, had his exam, and his appetite was better, although not 100%.  So this was Saturday - on Sunday, he is back to studying for a Monday exam - same thing - decreased appetite - he said his bms were still solid.  After his Monday exam, his appetite seem better but again not 100%. His next exam is next Monday, so I was hoping he would get back on track.  On Tuesday, he seemed to be better, but by Tuesday evening, I could tell by how he ate dinner, he wasn't back on track, and since then has eaten very little, has had nausea, and the past couple nights, bathroom trips.  He said that he is having formed stools and sometimes he goes, and it's just liquid.  He appeared to have some sort of virus as well these past few days, so I am really unsure if it's everything.  In the past, he always starts getting symptoms around the 3rd week.  

 Last night, after he got up to go to the bathroom and claimed it was a solid bm, I could hear him vomiting at the same time, although he had nothing to vomit.  He had a major night sweat. Is this a normal thing for crohn's people?  I am wondering if he had a virus and that major sweat was the last of it.  

 I will know soon when he wakes up how it's going.  I don't know if I should bother calling the GI as his infusion is on Tuesday anyway and he already ordered the bloodtests.  L has had more toilet trips than usual but nothing outstandingly high at this time.

 Poor kid, he was admiring his body, and now he is definitely losing a few pounds through these last few days.

 I am considering perhaps moving the infusion one day earlier, after his Monday exam (if he can be accommodated).  

 How do you mothers/dads do this?  I am a constant roller coaster of worry.  I'm so glad I am retired and don't have to wake up early because I certainly wouldn't be able to do that.

 Just need to let this out.


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## crohnsinct

Aw man!  The thing I hate most about Crohn's is that the symptoms of IBD overlap the symptoms of hundreds of other things so it is so hard to tell if it is definitively Crohn's. All the symptoms you describe could definitely be Crohn's but hard for us to tell.  You just have to know your kid's symptoms.  Are all of those his usual symptoms?  

It definitely could be nerves from exams.  I know my girls always get looser bowels when they are nervous.  

It could be IBS from the nerves.  IBS does swing from, solid to loose and could cause nausea.  

It could be a virus, lots of that going on around here.  

I think the thing that makes me think Crohn's is that he is good for awhile and then get bad, rinse repeat.  

I love that he is scheduled for infusion so soon.  I would definitely write the GI and describe what you are seeing.  This way when all his blood labs come back they can interpret them with a full picture of what is going on.  For example if inflammation indicators are up but not over the level without your description of what is going on they may not act but with the full picture it might sound some alarms.  

How do we do it?  Experience I guess.  I will send you a pm in a few.


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## Jo-mom

Thanks crohnsinct - good news is that he woke up hungry and no nausea but that can change. He did just drink  a smoothie and it seemed to go well.  I think I will do that.  I will email the GI at least with what's going on.  I did send him an email last month and as a result of that, he ordered the blood test.  I am so glad that the infusion is only days away.  
 His symptoms are a little different than in the past but with some similarity (if that makes sense) - he also did have a bit of minor cold symptoms and the chills a couple days ago, but they went away, so this is why I'm not sure what to think. 
 Oh well, let's hope for a good day ahead.


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## Maya142

Is he registered with the Office of Disabilities on campus? If not, he really should be. They can arrange stop-the-clock testing, so he doesn't lose testing time if he has to go to the bathroom a lot. That may help decrease his anxiety about exams (if he doesn't already have those accommodations).

They can also help reschedule exams, if he is unable to leave the bathroom or is just not feeling well enough. 

His symptoms could be anxiety due to the exams, but to be on the safe side, I'd tell his GI. The lack of appetite, nausea, vomiting, the bathroom trips at night could also all be due to a flare. The night sweats too - my daughter always has those when she is flaring.

Those two symptoms - night sweats and BMs at night - tend to be red flags for IBD. Has he had a Fecal Calprotectin test done recently? If not, that might be another thing to ask his GI about.


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## crohnsinct

^ ah yes!  Good one Maya142.  Fecal calprotectin will help you flesh out where there is inflammation or if this is just a nerves thing.


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## Jo-mom

He had Fecal Cal-protectin test done a couple months ago and we never received the results from the GI.  



I will have to send him an email right now.  We'll see how he feels comes his next exam- and take it from there.  It's a delicate topic.....


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## Lizzyg

Hi Jo-mom sorry to read things are tough at the moment. I am afraid I can't give much advice being a newish diagnosed mum too. I do know that I react in the same way when my daughter has any kind of niggle crohns related or not.  I think these hiccups are something we will need to get used to and we will eventually.  When that time comes it will feel more part of our life and we may not panic so much,it's all so new to us.  One thing to be sure of is that the GI team will do everything they can to keep our kids well. I would imagine with L doing exams at the moment it has played a big part with how he has been feeling.  It does sound like things are looking a bit better for him and I hope that still stands. Our Consultant is very much for stool testing to know where things are heading.  He checks my daughters every 3 months to keep a check on things, I would imagine that's the norm with everyone.

Remember look after yourself to keep strong.  Do something nice just for you. This worrying time is normal for a newly diagnosed mum but with time it will become easier to deal with.


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## Jo-mom

Thought I would update you on the latest. I contacted the GI regarding L's test for Remicade levels and found out through the BioAdvance coordinator that GI ordered L to reload once again with Remicade as his levels were sub-therapeutic.  He hasn't ordered an increase of dosage however and I'm not sure why (he is already on the 4 week cycle).  And I'm not sure what sub-therapeutic actually means in terms of numbers, however, I am glad that we will continue with Remicade and hopefully after the reloading doses, L will be back on track.  

 In the meantime, L is done with university for now and is very happy to get a part-time job for the summer.  So I'm glad the stress of classes/exams are done with for 4 months.

 Thanks for all your support.


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## crohnsinct

Oh man!  You just knew it didn't you?  :stinks:

Remind me what dose is he on?  My daughter went to 10mg and was actually prescribed 15 mg every 4 weeks for a bit.  Remind me (yeah I am old) he is on Mtx or Aza for joints right?  Those are supposed to help slow drug clearance.  No antibodies?  

I have never heard of reloading three times but hopefully it works.:goodluck:


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## my little penguin

Three times ??
Never heard of that 
Why not a higher dose or different med ?


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## Jo-mom

L is on regular dose 5mg/kg every 4 weeks- nothing else.  Remicade seems to be really helping his arthritis even when his crohn's starts acting up around week 3.  I haven't read anywhere about a third reloading either but I am no expert.  I have suspected for months that L needs an increase in dose....but I'm no expert (yes I said this twice)  Let's see where this goes. Now wouldn't it be nice to actually have a conversation with the GI about all of this?  Seems like it's not that easy to do.  He had last infusion just over two weeks ago and will start his reloading again in a couple days.  All I know is that he is doing well at the moment, and I'll take that.  So I am guessing that his trough levels were low with no antibodies or low antibodies but perhaps better than the last time he was tested in December. I am guessing that GI is trying this reloading to see if L can maintain at 5 mg/kg.  And my last guess is if he cannot, then an increase in dosage?  Who knows - it's time to play what will the GI do next?


Sorry to hear about what your daughter is going through.


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## my little penguin

Only 5 mg/kg 
Why not just bump the dose ?


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## Jo-mom

This is what I have asked and wondered.  I really don't know why dosage isn't being increased either.  I have emailed GI twice asking for a blood levels test and finally that happened two weeks ago, and suggested that I thought L needed an increase in dose.  I really don't know what his reasoning is, but I plan to find out.  When I learn, I will share with you all.


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## crohnsinct

I vote increase dose! Or add Methotrexate.  

What was his level?  Just curious.  The Remicade prescribing literature says 4-7 is the goal but  many, many ped docs have found out that over 7 is needed for most of their patients.  At around a level of 12, O was golden.


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## Jo-mom

I have been voting for an increase to dosage as well but I guess I have no electoral power!  I wasn't given any numbers at all.  The BioAdvance Coordinator (who is the go between with GI and myself and who organizes the treatment) advised me they were sub-therapeautic.  I did email her asking if she had numbers but I will also email GI asking for more specifics and inquiring if increase of dosage is in the cards.  The last time L had levels test, the coordinator advised he had almost no remicade in his levels - so I am assuming (boy we do a lot of that) - that levels were lower last time.  Once I learn more, I will share with you so that we can all learn together.


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## pdx

Yeah, I've never heard of repeating the reloading doses either--hope it helps, though. Sorry that it's so hard to communicate with your son's GI. I wonder if it's because he's an adult. Has your son given you official authorization to get info from the doctor?

Glad the school year is over for him!


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## Maya142

That's odd - I've never ever heard them redoing the loading dose 3 times! Especially without increasing the dose - his body has shown that he clearly needs more medication. If you've already tried reloading once and that failed, then you definitely need to increase  the dose.

The third reloading may give him a "boost" but I really doubt it'll keep his disease under control - his levels will just go back down again in a couple months. It seems clear that he is metabolizing the medication too quickly, so why not just increase the dose to make sure he's getting a therapeutic amount?? Without doing so, reloading doesn't really make sense.

Have you considered a second opinion?


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## Jo-mom

I have to get some answers from the GI.  After the 2nd reloading, he did move the dose frequency to 4 weeks, but clearly now the dosage is questionable.  Definitely need to see if his intentions are to increase dosage after the reloading.  :ywow: We have a few weeks to sort this out....


Now that L is finished with school, I will suggest for him to be more proactive with reaching out to GI.   Ya right.


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## Jo-mom

The GI office actually contacted us today and the GI would like to see L on Saturday. Let's see what the plan of action is. L had infusion today. He really wants to remain on Remicade so hopefully it's as easy as GI recommending dose increase moving forward. I sure hope so. Every time we have any specialist app't, my heart sinks a little bit with dreaded worry, but it goes away after I have a logical conversation with myself. The app't is a good thing.


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## crohnsinct

I am so glad there will be some conversation.  Pointer:  write down your questions/concerns etc.  Go through them one by one.  Too often we go in and the GI motions something we didn't think of and we get derailed and if we didn't write down our questions we leave having not asked half of them.  

5 mg is really a low dose for kids.  Our GI said that about 85% of kids can't control disease with 5 mg regards of interval.  You have a lot of room to make dose adjustments so I really don't think your son has to worry right now.  I also don't think that the GI would be trying reloading for a third time if he was thinking of abandoning Remicade.  But in the words of Jo-mom, "what do I know".  

Good Luck Saturday and make sure to let us know what happens in this round of Outguess the GI.


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## Jo-mom

Really appreciate your comments - I agree - I don't think he would have ordered more Remicade if he was thinking off dropping it. 
Thanks for the tip of writing down questions/concerns.  I will definitely fill you in on how the app't went.  

How's O?  I will check the other thread you have been updating us on.  I believe she had app't yesterday?


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## Maya142

Yes! We always give the doc a typed short summary of her condition in the last 3 or  6 months - usually just bullet points. And at the end of the summary, M lists questions and concerns, such as "My symptoms return 3.5 weeks after Remicade - the diarrhea comes back, and I'm having 10 BMs per day and I have a lot of abdominal pain, which is making me miserable. What would be the next step?" 

That way both you and the doctor have something to look at while M is talking and nothing is missed or overlooked.

She is very organized but this has really helped her take charge of her own medical care -if she is not flustered and worried about forgetting questions, that lets her really talk to the doctor and helps her make informed decisions.


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## Jo-mom

Warning long rant.
Okay, L had GI appointment yesterday. Appt was set for 1:30 pm and we saw him at 3:45 PM. 
L had Fecal Calprotectin done in Feb, a few days prior to his infusion. He was starting to flare when he had it done. Just found out yesterday that it was 1800. L has never had this test done before so we have no clue where things were at before. Remember that he was mostly crohn's asymptomatic for years and had inflammation in the background. 

So we spoke about Remicade levels and how they were below 1 (blood test completed a few weeks ago). L is at 5 mg/kg every 4 weeks at present. When I suggested 10 mg/kg every 4 weeks, he said that this isn't something happens as L is already on double dose. I actually used you guys as reference indicating that many young adults/teens end up getting 10 mg/kg every 4 weeks. The GI was open about this but explained that he doesn't think the drug company will approve it but will put in the paperwork for the 10 mg/kg every 4 weeks.

He did suggest possibly adding MTX or Imuran. L explained that he feels good for close to 3 weeks after the infusion and then it slides down and he gets symptoms (loss of appetite, nausea, blood in stools, whole nine yards). 

When I told the GI about your experiences with the increase of dosage, he actually said if I knew the names of the GI, he would be happy to refer L to a new GI who might be more familiar with this regime. Unfortunately, most of your aren't in Canada, specifically general Toronto area. If anyone has any suggestions, please let me know. Now I understand why he ordered another reloading. Now it's wait and see if the drug company will approve. Not sure why they wouldn't? 

So I left office with mixed feelings. L will continue with Remicade and hopefully we can get the 10 mg/kg. 

GI suggested Stelara if Remicade ends up being off the shelf. I asked if it would also help AS. He said it was approved for rheumatoid arthritis but wasn't sure about AS and would be letting L's rheumatologist know. I did some research and Stelara doesn't seem to be the best choice for AS.  I would think Humira would be a better choice.  But I don't want to get too ahead of this as right now let's just wait and see if we will get the increase of dosage for Remicade.

I have read different threads re: calprotectin levels. I am surprised that L had such a high reading as 3 out of 4 weeks, he is doing well, but I believe his body never had enough fuel to get rid of the inflammation. 

Any input would be very much appreciated. :sign0085:


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## pdx

I think that adding methotrexate would be a good thing to try next. It can be an effective Crohn's med on its own, and it also often has the effect of increasing Remicade levels when used in combination with Remicade. Just like with Remicade, it can take a while to work, so your son might not get immediate relief, but I think it might help a lot in the long run. 

If he does start taking it, let us know. It can cause nausea in some people, but there are things he can do to minimize it and we can give you suggestions.

As for Remicade, 10 mg/kg every 4 weeks is a very high dose, and perhaps more than what he actually needs. If insurance doesn't approve it, there are in between doses that your doctor could ask for. He could try 7.5 mg/kg every 4 weeks, or 10 mg/kg every 6 weeks.


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## my little penguin

20 mg/kg every 4 weeks is high dose on remicade 
10 mg/kg every 4 weeks is at the higher end 

Stelara failed trials for AS 
It is not effective in any arthritis on the spine 
Granted that was at the PsA dosing (45 mg every 12 weeks )
And not the crohns dose 90 mg every 4-8 weeks)

Ds has crohns and JSpA however his has not been found in his spine yet 
They keep looking 
He needed to take high dose Stelara (90 mg every 4 weeks) to even touch his arthritis 
He also takes mtx which helps peripheral arthritis and boost the Stelara 
Mtx does not help Axial arthritis 

Going to tag tesscorm she is in Canada not sure exactly where so she might have ideas on Gi 
Her Ds is and adult so she may not get this 

In the US it’s tough to get insurance approval for 10 mg/kg 
Or any biologic for that matter 

Humira might help 
Unfortunately the best meds for AS 
Cosentrx and Taltz are not good choices for crohns 
They can in some cases make crohns worse 
And don’t treat crohns


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## Maya142

Stelara does NOT help axial arthritis in axial SpA or AS. 

So if his MRI showed SI joint inflammation, then it's not the best option. Untreated axial inflammation will over time lead to more erosions, more sclerosis and then finally ankylosis  (fusion). Both my girls have fusing SI joints and have progressed from axial SpA to a full blown AS diagnosis (an AS diagnosis requires damage to SI joints that shows up on x-ray, not just MRI). 

Based on what your profile says, it sounds like he so far has axial SpA (visible inflammation and slight damage on MRI, but none on x-rays). If he is HLA B27+ he has a higher chance of progressing to AS.

Regardless, Stelara does not work for axial SpA OR AS. Any spinal disease (including SI joints) and it failed in axial SpA trials.

And we were told those trials were done with 90 mg every 8 weeks - so not the regular Psoriatic dose (which is 45 mg every 12 weeks).  But I'm not 100% sure about that.

Unfortunately, we ran into a similar situation, where my daughter's AS did not respond to anti-TNFs. So eventually we went with Cosentyx, but as MLP explained, it's an IL-17 inhibitor and actually made Crohn's worse in trials.

M has severe AS but mild Crohn's and we felt we had to take the risk of trying Cosentyx because her joints were just getting worse and worse, pain was unbearable, she wasn't able to sit, sleep, walk etc. At the time, her Crohn's was well controlled on Simponi, before she switched to Cosentyx (her Crohn's responds very well to anti-TNFs like Remicade, Humira but her AS most definitely does NOT).

So we tried it, and within 3 months, her Crohn's flared. Added Imuran and played with the dosing for a year, but it caused too many infections. So eventually we got a second biologic approved - Cimzia (which is an anti-TNF). The combination worked for  her.

So since your son has moderate Crohn's at the very least, not sure Cosentyx is an option.

But in the US, we were able to 10 mg/kg of Remicade approved - every 4 weeks. I'm shocked your GI says that it's not commonly covered - we had no issue at all. We did 10  mg/kg every 4 weeks for quite a while. And then we did high dose Remicade - it has been studied for juvenile idiopathic arthritis, so we figured it was worth trying for my daughter's AS.

We first did 15 mg/kg every 4 weeks, then upped to 18 mg/kg and then 20 mg/kg. NO issues with insurance approval, but that's probably because M had tried and failed several other drugs (Humira, Enbrel, Remicade at a lower dose etc).

We are in the US, so can't help with names. But I feel like I have seen Canadian patients on this forum (both adult and pediatric) on higher doses of Remicade...Tesscorm's son was on a higher dose of Remicade (I think), so  perhaps she can help.

Going to tag Pilgrim -  I know Pilgrim's daughter is on a double dose of Humira (weekly vs. biweekly). She is also in Canada.


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## Jo-mom

L does not have HLB 27 gene and has mild erosion of Si joint at this time - MRI on rest of his spine was negative.  He has mild severity osteoarthritis in both hips.  Remicade has helped immensely with his arthritis - although he has also been going to physio 3 x a week for almost a year now, so I'm sure that is helping.  He does have moderate to severe crohn's.  The GI doc made it seem that the drug company might not approve 10 mg/kg every 4 weeks but he didn't say anything about the insurance company.  I am hoping to find out in a few days what happens on that front.  



Tesscorm's son is on 5mg/kg every 6 weeks, but I will reach out to her to see if she might have a referral.  



Thank you Maya142.


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## crohnsinct

Well I wouldn't say that 10 mg/kg every 4 weeks is the usual but it does happen.  The fact that this GI is so surprised by that has me concerned.  It was Tesscorm's son's GI who said he likes to see he levels over 10 and S may have been on a higher dose at one time.  

10mg/kg every 4 weeks is usually used until the kids get into some sort of remission.  Then when inflammation is down and is not interfering with drug levels so much you can start moving infusions out and dose down.  

I am not familiar with the Canadian medical system but it seems weird to me that he doesn't think the drug company will approve that dose.  Does he mean the payor?  If so, that makes sense.  Here in the US some insurers will require you to try 7.5 mg/kg first before going to 10.  Especially since it is really just that last week that is giving him trouble.  maybe the 7.5 will work. 

Good luck!  I really hope they sort this out quickly and you can move forward with a new treatment plan.


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## Tesscorm

Hi Jo,

Sorry, bit rushed just now... crazy day at work today...

S is at 5mg/kg every 6 weeks (was initially at 8 weeks but has never been higher than 5mg/kg).  At his last test, his serum level was at 11 or 12, I asked his GI if we could extend his infusions out to 7 weeks as he was above the 5-8 target level but his GI did not feel 12 was too high.  Said the 5-8 is only a rule of thumb and not necessarily a 'solid' target.  He also said he had patients as high as 20 and he was comfortable with this as it gave a bit of a cushion should an infusion be delayed.

As far as covering cost...  have you spoken with your BioAdvance Coordinator?  Ours has been really helpful in assisting/guiding for cost coverage.  While S was in school, he was covered under my insurance as a dependent.  There was a period when I wasn't working and before S was working full time, he was covered first under Janssen's compassionate care for a little bit and then coverage was transferred to Ontario Health (when they instated free meds for those under 25).  Recently, Ontario Health sent us notification saying that they would no longer cover S as those under 25 who have private insurance (ie through work) now need to have their own insurance cover their med costs.  So, we just switched over to S's insurance.  That was a HUGE battle!  Not because they didn't want to cover but because we had very little time between Ontario health's notification and his next infusion, so approval had to be done quickly.

Your BioAdvance coordinator should be able to help you navigate between your insurance, compassionate care and Ontario Health.

I'll send you a private PM a bit later with contact info for S's dr...


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## Maya142

> L does not have HLB 27 gene and has mild erosion of Si joint at this time - MRI on rest of his spine was negative. He has mild severity osteoarthritis in both hips. Remicade has helped immensely with his arthritis - although he has also been going to physio 3 x a week for almost a year now, so I'm sure that is helping. He does have moderate to severe crohn's. The GI doc made it seem that the drug company might not approve 10 mg/kg every 4 weeks but he didn't say anything about the insurance company. I am hoping to find out in a few days what happens on that front.


I'm a bit suspicious of the osteoarthritis in his hips - it sounds like he has mild arthritic damage to his hips. Hip involvement is extremely common in axial SpA, not sure why it wasn't attributed to that. Both my daughters have some hip damage due to their axial SpA. My husband also has AS and developed very severe hip damage by age 30. That is when he had his first hip replacements (he's had 5 replacements).

I only bring this up because hip damage can progress quickly in AS and hip replacements are quite common with AS. So it's something to keep an eye on.

Very glad to hear his spine MRI was clean. Was that hip damage found on an MRI or x-ray?

It sounds like due to the severity of his Crohn's, he definitely needs more than 5  mg/kg every 4 weeks. I think crohnsinct's idea of 7.5 mg/kg is also a good idea - it's very possible that it will work and it's also possible that insurance might cover it more easily.

That said, I'm really not familiar with the healthcare system in Canada.


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## Jo-mom

The rheumatologist suggested that the crohn's was probably the cause of the arthritis.  Xrays were done on hips.  We also did MRI but we never got the results of those - we will find out in July when he has next app't with rheumatologist.
We haven't been given a "no" for the increase of remicade. It was just the GI's comments.  I will actually reach out to my BioAdvance coordinator and will find out if coverage is an issue and to see if the GI has sent in the necessary paperwork, etc to get this thing going.  GI seems to take awhile to get things rolling.  I wonder if I wasn't an advocate for L, just exactly how little would be happening in terms of treatment right now!  

Thank you all.


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## Maya142

> The rheumatologist suggested that the crohn's was probably the cause of the arthritis.


Yes - axial SpA is associated with Crohn's. Sometimes it's called IBD related arthritis or enteropathic arthritis -  all different names for essentially the same disease. Those results suggest to me that he likely has arthritis in both hips and SI joints - but of course, no one but your rheumatologist can tell you that for sure.


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## my little penguin

Would like to add DS has juvenile spondyloarthritis associated with IBD as well 
But it’s important to note whether the arthritis activity is dependent on Gi flaring 
Or indept(flares on its own as well)
For ds his arthritis can flare independent of the Gi tract 
So even if his Gi tract is all good his joints may not he


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## Jo-mom

L's arthritis seems to be independent of this flaring. When his crohn's is bad, he seems to be doing well with arthritis. Definitely will keep an eye on everything. We see rheumy in July and will find out more about the MRI on his hips. Definitely he has arthritis in his hips as xrays show that but MRI is always a better diagnostic tool.  First time I heard doctor refer to his hips as osteoarthritic was at the Emergency when he had groin pull and couldn't walk. I might have just kept that term in my brain.  I don't even know if the Rheumatologist referred to them as osteoarthritis.  I think a light bulb has just gone on in my brain.

  Remicade has really helped - giving him more fluidity to his movements - he can crouch, do stairs, and walk easily now whereas before it was a struggle. 

Thank you my little penguin and maya142. It really is terrible to have these kids inflicted with two pretty bad conditions.


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## Jo-mom

Hi everyone - thought I would share some good news.  L has been approved for the increase of 10mg/kg every 4 weeks.  We're lucky to have such a great BioAdvance Coordinator.

 Thanks for your input and support.  I will let you know how that goes in the future.  
 :dusty::thumleft:


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## my little penguin

Love it
Great !!!
:dance:


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## crohnsinct

This calls for some dancing poop!


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## Pilgrim

Great News!


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## Maya142

That's wonderful! I hope he starts feeling better soon.


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## pdx

Really hope the dose increase helps!


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## Tesscorm

Great news!! 

Hope this does it for him!


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## Jo-mom

Since you guys have so much experience with all the testing that goes on with crohn's, can you enlighten me why the GI might want to have L's albumin levels tested.  Received phone call today by staff to pick up requisition for test.  I don't think it has ever been tested.  When I checked the website re low or high levels of albumin, he doesn't have symptoms that are obvious.  Is this a routine testing if someone has been on Remicade?  Is this something that might be done prior to giving methotrexate?  



If you guys can share your experiences/knowledge/wisdom, it would be appreciated.  It obvious wasn't anything urgent as they (GI office) called on Monday and didn't leave a message and called again today about requisition for blood test.


Still learning here. 

:shifty-t:


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## crohnsinct

It's a routine test for someone who has IBD.  Especially on biologics and immunomodulators.  

In addition to flagging some liver issues albumin is watch because when it goes low it could signal IBD inflammation.


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## my little penguin

Albumin is standard test moot crohns kids
Ds has it checked as part of routine labs at least 1-2 times a year every year 
Some years every three months woth std labs 
Never had an issue with it


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## crohnsinct

Waned to add that it alone doesn't mean damage to liver.  There are other tests as well AST and ALT and even then those numbers can be a little off and it is nothing.


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## Jo-mom

Hi guys - just wanted to share that I am waiting for L while he is getting his infusion.  He made it to 4 weeks for the first time without symptoms.  The increase in dosage seems to be helping.  Noticed that his appetite remained good throughout and no other obvious crohn's symptoms.  Thought I would share some good news.  Thanks for your insight.  Oh and he has gained about 5 lbs since last weigh-in 4 weeks ago.  
Do you guys know how long it takes to build up trough levels?


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## pdx

That is great news--thanks for sharing!


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## crohnsinct

Woohoo!  The committee was right again!  Good for you for advocating for your boy ummm man?  Long may it continue!  

Trough levels?  2-3 maybe.


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## Jo-mom

Ya he's a boy-man.  He says he's an adult when I "nag" him but then he wants his mommy for other things.  Boy-man is about right.  Oh and another thing.  I told L to make sure that he was getting the right dose yesterday and sure enough, the nurse was going to administer the 5 mg instead of the 10 mg/kg dosage.  He corrected that mistake..  I wonder how often that happens and this is one time where I am glad my mommy intuition worked out favourably.


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## crohnsinct

OMGosh!  Thank goodness we are paranoid buttinsky's!  So glad you were there to backstop.  You make the control freak in me so very proud!


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## Jo-mom

Control freak, mommy intuition - same thing! LOL!


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## Maya142

Jo-mom, so glad to hear your "man boy" is feeling better   and the higher dose seems to be working!!


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