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

DustyKat

Super Moderator
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. :)
 

DustyKat

Super Moderator
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
 
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.
 
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

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

:mademyday:
Dusty. :)
 
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

Super Moderator
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

Super Moderator


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
 
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

Super Moderator
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
 
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

To save time...Ask Dusty!
Location
Kentucky
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

Super Moderator
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
 
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

Super Moderator
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:
 
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

Moderator
@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

Super Moderator
@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:
 

DustyKat

Super Moderator
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

Moderator
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~
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
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

Super Moderator
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
 

AZMOM

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

Keep us posted......

Love you....
 
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

Super Moderator
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
 
Will keep them crossed for you too.

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

Moderator
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

Super Moderator
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

Moderator
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:
 
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

Super Moderator
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

Moderator
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

Moderator
Staff member
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:
 
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

To save time...Ask Dusty!
Location
Kentucky
Every single day, every hour, every minute!! I hope he's feeling better this morning! Good luck T, sorry!!
 

DustyKat

Super Moderator
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
 
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!
 

Crohn's Mom

Moderator
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 ?? :)
 

DustyKat

Super Moderator
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

Moderator
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 :)
 
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

To save time...Ask Dusty!
Location
Kentucky
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

Moderator
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

Moderator
Staff member
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

Super Moderator
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
 

Jessi

Moderator
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

Super Moderator
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
 
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

Super Moderator
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

Moderator
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

Moderator
Staff member
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:
 
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

Moderator
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?
 
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

Moderator
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*
 
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

Moderator
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!
 
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.
 
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

Super Moderator
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

To save time...Ask Dusty!
Location
Kentucky
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

Location
Michigan
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!
 
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

Moderator
Staff member
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

Super Moderator
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:
 
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

Moderator
"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:
 
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

Moderator
Staff member
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

To save time...Ask Dusty!
Location
Kentucky
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!!
 
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
 
Location
NY
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

Super Moderator
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

To save time...Ask Dusty!
Location
Kentucky
Yay Sarah!!

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

Crohn's Mom

Moderator
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:
 
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

Moderator
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

Super Moderator
Hey Zoodles,

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

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
 
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.
 
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

Super Moderator
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
 
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

Moderator
Staff member
: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:
 
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

Moderator
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:
 
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

Super Moderator
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.
 
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:
 
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