# I feel like the worst mom ever today...



## izzi'smom

Izz got her ng tube and has been crying since 3:30. She is finally asleep (8:30) and now it is my turn to cry. 
I swear she has been in the bathroom twenty times today, plus she has vomited three times. Her belly hurts, she has an awful rash on her backside, and her throat is sore. She vomited up the 20 ml of peptamen I gave her...I feel so awful!!! She said today "Why do *I* have to always do this stuff" 

So I am hoping against hope that her rash will be clear, her throat will feel better, and the Prevacid will work against her nausea in the am. A better day, right?! I feel like it can hardly get worse. 

Plus my parents, after telling them it wasn't a good night for a visit, *had* to pop in for a visit. I love them to pieces but I truly had my hands full and Izzi was just beside herself crying. They brought her some lovely flowers and me a beautiful ring for my birthday but AARRGGHH! Plus I had to put my pj's on and say goodnight three times to get them out the door.:angry-banghead:

Thanks for listening, and anyone doing EN have vomiting problems? We are doing 5-7 cans a day via gravity feed instead of night feedings per our doc's preference.


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## Dexky

Oh sorry Ang!  I don't know anything about the EN but I do know how heartbreaking it is to see your child so ill.  I hope things are better for her tomorrow!


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## izzi'smom

Now if I could quit feeling sorry for her and go to bed! I'm on a second glass of wine and considering a third  Tomorrow won't be great for either of us if I don't get to bed soon lol!


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## Crohn's Mom

Awe Angie, I'm sorry for Izz...and you! 
I know this is breaking your heart 
Tomorrow will be a better day right ! 
I can totally empathize with the o so caring grandparent scenario as well.....they mean well I guess right ? lol
Go on...have the 3rd lol...and then REST honey  You deserve a good nights sleep!
big hugs !
~T~


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## Tesscorm

Oh, I am so sorry today was so difficult!   I feel partly to blame for Izzi's suffering (and yours!) for encouraging you to try the ng tube.  :frown:  I can just imagine that you felt all her pain 100 times over!  I truly hope tomorrow is better.

Stephen's never had the formula through the gravity feed; we've only used the pump.  However, they were quite strict at the hospital in starting Stephen off very slowly with the formula rate.  He started off at 25 or 50 (sorry, I've forgotten...) ml per hour and over two days gradually increased the rate to 200 ml/hr.  This was to make sure that he could tolerate the formula.  Perhaps slowing down the rate that Izzi is getting her 20 ml would help alleviate the nausea.  They also told us to only feed our formula when it was at room temperature.

What happened to the tube when Izzi vomited?  I'm only asking because while this has never happened to Stephen, others here have mentioned it...   the tube can be brought up when she vomits.  It would then have to be pulled back through.  Did your doctor mention this (ours didn't...)?  If she's still nauseated tomorrow, maybe call your doctor and ask what you should do if this happens.  Hopefully, you'll be prepared to react before she even has a chance to realize what's happened.

Is her throat sore from the tube?  Stephen didn't have a sore throat but he did find the sensation of the tube annoying the first day.  By the second day, I think it only bothered him when he thought about it.  Is she allowed freezies?  If not, just ice frozen in popsicle moulds.  Maybe that would help her throat or distract her a bit.

Sending lots of wishes that tomorrow is better for both of you! :ghug:


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## AZMOM

I'm with T, Ang. Love your heart.....love Izzis..... I could so join you on that 3rd glass!!

Now you know what a difference a day can make.....praying for a brighter tomorrow. 

J.


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## NancyP

No suggestions, just prayers for you and your sweet girl.  What a brave girl to go through all this.  Hoping tomorrow is a bright new day, and things go much more smoothly.


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## tiloah

You are definitely NOT the worst mom! I will keep you and your kiddo in my thoughts. I hope tomorrow is much improved. You both deserve to feel better. *big hugs*


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## littlemissh

Off course you are not the worst mum, you feel bad because she feels bad and that makes you a great, but sad mum. I hope the enteral nutrition works well for Izzy. Its worked really well for me on 2 occasions. One via ng tube the other orally and I know its been a big success with others on here particularly the little ones.
Hope you get a good sleep and your Izzy gets some relief soon. You need to look afetr yourself so that you can look afetr Izzy


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## DustyKat

Oh Angie...MEGA HUGS...:hug:

Poor you and poor Izzi......I feel your pain hun and so hope that today is better for you both. Good luck Mum and keep us posted on how things are going. 

:hang:  You're are doing fab mate. 
Dusty. xxxxxxxx


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## vness1208

my thoughts & prayers are w/ you & izzi. I hope she starts to feel better soon  hang in there..


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## guest837

Hi Angie!
I know how she feels! i am 15 years old and have had an NG tube in since end of feb this year!
the first day i just cried and didn't speak to anyone, because my throat was so sore, didn't believe all the doctors that said "it will get better!" but it did!
Took a day or two but once i had got used to it, it was fine - felt just like a pair of glasses 

since going on the EN feeding, my weight has gone from 29kg to 49kg - so it isn't all bad!!

Have also been back at school (full time) for the last two weeks - and the kids at school don't even notice it anymore!

Hope i've put your mind at ease and if you've got any other questions feel free to ask me 

Josh


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## Silvermoon

Both my brother and I had NG tubes... well my brother did - I couldn't handle it and they ended up putting in a J-tube - which goes directly into the stomach from the outside of the abdominal wall raher than down the nose/throat.

It sucked, but it did help.  I found, though, that I did get nauseated if the food went in to fast.  My brother could handle jsut dumping it in and letting it feed through, but mine ran in very slowly - took about 16 hours through the night.  I also had to prop the head of my bed up or I puked.

So maybe flowing slower over a longer period of time would help.  It sucks at the time, but in the long run it is infinitely beter for your girl to continue... she will gain weight and feel better in the long run... hang in there.

Big squishy hugs from The Moon.


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## Brian'sMom

Angie,
Wow! I'm so sorry its not going well right now. You're a good mom!! Hang in there. You're mom and dad probably are wanting to help 'you' and can't stay away, but I understand when 'company' (even tho its mom & Dad) is like adding to the already chaotic day. Hope and pray tonight goes better.
Sorry I don't have any EN advice to give.


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## dannysmom

Hi Angie. I hope things were better today for both of you!!


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## Crohns08

Hey Angie, you are definitely not the worst Mom ever! You're doing what you have to to help your child, in my books that makes you a good mom. I can speak from experience, sometimes things have to get a little rough and maybe even bad before they get better. But remember, however long the night, the dawn will break. =]


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## Aaron1333

I feel truly sorry for you and Izzy to have to go through all of this! I have only just had my NG tube taken out so i've just been through everything Izzy is about to go through. Trust me i was exactly the same, the first 3 days and nights were horrible! I wouldn't stop vomiting and running to the toilet, however as the days go by it does start to get better!  I will say, since having my NG tube out my nose get's quite bloody sometimes  Good Luck with everything and i hope it all goes well! xx


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## izzi'smom

I was away yesterday for surgery...feel really bad for Izzi's dad for having to put up with the chaos all by himself yesterday (plus dropping me off/picking me up). 
Izz has stopped vomiting (she is on Prilosec now)...HOORAY!
She is still having a lot of d...we are keeping her home for this reason. 
She is also still complaining that her throat hurts-but won't take cough drops/chloraseptic. She will drink water and occasionally have an italian ice. 
Tim and I figured out that it will take us 10 hours to get 5 cans into her via gravity feed (they are having us hold a syringe) and ideally her doc wants 7 cans. We are looking into getting a pump. I was a bit reluctant as it is not covered by insurance, but I don't have 10 + hours a day to sit next to my daughter, as much as I <3 her lol!
Her doc wants to admit her (we got less than a can into her yesterday) but I said that is a work in progress (we had to go slow to avoid vomiting and are working on getting a pump). He also wants to CT her but if it won't change her course of treatment I don't see a reason to radiate her. Since the vomiting has subsided since the Prilosec, it won't make a difference if she has disease in her upper GI tract...it's being treated. The treatment for the disease in her large intestine isn't working...I am not sure it matters how bad it is...we will continue to try different treatments until we find what works.  
Thanks for all of the kind thoughts...and thanks for listening!!


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## DustyKat

Thanks for the update Angie.

It's good to hear that things are starting to settle a little. I hope you can get a pump without too much problem. Good luck with everything hun and let us know how things are going. 

Thinking of you, :hug:
Dusty. xxxxxxxx


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## DustyKat

Oh, I just saw your pic! What an absolute angel! Bless her...:hug:

Dusty. :heart:


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## Kelly2

I am so sorry to hear about Izz, and all that she has been going through.  I know how tough it is for you and her dad too.  My child was diagnosed at age 11, and started NG tube feeding around age 13, and it was absolutely unbeliveable how much it helped her.  I cannot believe your insurance company does not cover the rental of a pump!  Is it perhaps because they need a prescription from her doctor in order to send one out - or do they flatly just not cover it?  In other words, if he changed the prescription to being ng tube fed via a pump, rather than by gravity, would they send one out?  Do you know that you can rent these pumps?


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## Tesscorm

Hope she's feeling a bit more comfortable with the tube. And that the vomiting has stopped!!

Re the d - May be different for Izzi, but when Stephen was on the formula only, his dietitien told us not to be surprised if he had diarrhea throughout the six weeks as 'what's going in is liquid, what's coming out will be liquid'.  This made me a bit nervous as d had been one of his few symptoms - so wasn't sure if it was working, wasn't working???  Anyway, this was the case for him (altho I have read that others did not have the same experience) but there was no sense of urgency, blood, etc.  BMs went back to normal as soon as he started eating solid food.

I hope you start to see improvement really soon!  And that each day is a bit easier!


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## littlemissh

I agree with kelly. When i had the pump it was just lent through nutricia who provided training, the rental of the pump and the backpack as it was a little portable pump. This meant that it could be run overnight and more slowly. They made their money as their products were used.
 In the uk it depends what area youare as to which company they use, it may be similar in the states.
Will your insurance not cover the rental or is it the package of home support etc that they will not cover. Life would be so much easier for you with a pump.


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## izzi'smom

Thanks for that, Tesscorm. She's still having urgency, accidents, and blood...but it is only day 2, really, and yesterday she didn't even have a whole can. I have faith for the future!!
The pump just isn't covered, nor are the supplies. We have to pay $75 for a months worth of formula, which is fine...I'd probably spend that to feed her for a month anyway. Our insurance is strange...but at least we have insurance! 
Her dad managed to get a while can in her, plus I did 60ml earlier...and the pump should be delivered in about an hour...HOORAY!


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## Dexky

Good luck Ang!  Hope the pump came and is working out!


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## AZMOM

Ang....she'll get there......she has to!

Hugs (and pinot noir )

J.


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## Tesscorm

Just saw her picture!  OMG, she is a beautiful little girl! :queen:


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## Entchen

Dear kind, beautiful mom to Izzi, you are doing a fantastic job helping Izzi get used to having an NG tube; the effort that you and family are putting forth just shines through this entire thread (and other posts -- I rarely comment due to no experience with childhood Crohn's, but I do read and send warm thoughts).


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## izzi'smom

Pump is here...I am *loving* it! :dance:  Still quite a bit of fussing (y'know, compared to eating) and backpack has a few kinks to work out (bag tends to fold and stop flow) BUT I don't mind using the pole as I hate having her up and wasting calories at this point. She *still* has AWFUL d...up 10 times in the night last night  and still c/o pain, throat and belly. We're getting there, though!  Thank you so much for all of the support...it SOOO helps.:rosette2:


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## DustyKat

Thanks for the update Angie! 

I am hoping, wishing and praying that this does the trick for your gorgeous baby...:hug:...I know as each day passes things will be become easier and more comfortable for you both.  Sending you all the luck in the world Mum! 

Dusty. xxx


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## muppet

I'm really sorry that you're going through this. I feel lucky that we've never had to deal with much medical "apparatus" when we're home, we usually leave that stuff behind at the hospital. I can't imagine how difficult that has to be.

We'll be thinking about you.


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## Zoodles

Hope that the pump is the solution to all of your needs.  I'm still trying to talk with Brendan's care manager about their youngest Humira patient.


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## izzi'smom

5 cans today...
:dance::dance::dance:
Which means 1250 calories (I am fairly certain healthy 4 year olds need 1200) plus some crackers, italian ice, and juice...looking forward to her weigh in tomorrow so I can tell the doc (who was SUPPOSED to call me today which is why I carried 2 phones in my pocket all day...ARGH) that she is gaining...YAY!


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## muppet

:thumleft::thumleft::thumleft::thumleft::thumleft::thumleft:


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## DustyKat

Woohoo, that is fabulous! Well done Mum and bravo Izzi! :award2:


:mademyday:

Dusty. xxx


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## AZMOM

Great!!!!!!!!!!!


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## Brian'sMom

Angie, Izzi's picture of her sleeping is ADORABLE!!!


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## Dexky

That's awesome Ang!!....and I'm the worst mom ever!!  I'm so bad at it, my kids call me daddy


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## izzi'smom

Dexky:rof::rof::rof:you crack me up...thanks, i needed that!


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## rmk

Hey Angie I know what you mean about feeling like the worst Mom, but it's not true, Izzi is absolutely gorgeous, my son Tadhg is 11 so he drinks the feeds like a shake or juice for now, so no info on the NG. I hope it gets a little easier after today for you all, every time we try something new i get so scared for him too. Wish you all the best, Rachel


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## tannersmom

praying your little girl feels better, she is beautiful!!!


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## izzi'smom

Not much to update, but...
We tried for 6 cans today...but she vomited at 5 so I let her off the hook. I *think* she is a few ounces heavier, though YAY! She did eat a few things. 
Her doc called today (2 days later...glad I didn't hold my breath) to tell me he wants to hospitalize her to try "IV fluids and steroids, which I know wasn't helpful last time" ??? OK. He is also pushing for an enterogram because of the vomiting. He wants to hear back from me Wednesday regarding her weight...and we'll go from there


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## Tesscorm

Hope she's becoming more accustomed to the ng tube and that she is beginning to gain weight!  

Good luck to you and Izzi - hope she doesn't have to go back to the hospital!


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## AZMOM

Just wanted to say thinking of you all.......  Let us know what you do about the hospital......

J.

PS Dex.......can't live with him, can't live without him....:rof:


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## Dexky

Ah well, I gladly sacrifice myself to be every mom's punching bag!  

Let us know how she does today Ang!  Are you going to try to break the 5 can threshold again?  Good luck to you an Izzi!!


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## izzi'smom

Hmmm...not sure, Dex. We are working on #4 and 5 right now. Her dad and I discussed it and he think it's when she gets excited (we were playing/laughing one day, running/having fun trick or treating yesterday...etc) that she vomits. I don't know. 
I know she isn't getting enough sleep...there was no school today and she took a 3 1/2 hour nap. (she goes to bed at 7:30 and wakes between 6:30 and 8). I feel awful about it but her brother usually wakes her up in the am despite keeping him on a separate floor  I am certain she wouldn't sleep in the hospital, either, though (Last time a nurse insisted on waking her to assess her during the 11-7 shift, besides being woken by the IV and vitals and bathroom trips.) 
Just going on and on again. Ack. Sorry!
Tomorrow's another day


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## Dexky

I'd say that's a likely possibility Ang!  Excitement for a child is probably similar to stress for an adult.  What do you think you'll tell the doc tomorrow??


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## izzi'smom

I'm gonna tell him to shove it.  She was at 54# tonight, up from a low of 52# the 27th. I did 5 1/2 cans today. (For good measure I'll give her a can before weighing her tomorrow [insert evil grin])
If he wants to do an MRI enterogram I think I'll allow it, though. It must be frustrating for him to wonder about the degree of her disease, and although if she doesn't have surgery for a while I know they will need to repeat it I can see why he wants to know the degree of her disease.


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## hbonsky

You're definately not the worst mom ever!!  I have felt this way several times.  Zachary had the tube for a while and got used to it.  He is so spoiled rotten because of my guilt over him being so sick all the time.  It will get better


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## kimmidwife

Hi Angie,
   I am also feeling like the worst Mother ever. Caitlyn is so unhappy and wants to eat so badly. I am letting her have broth since I saw in the EN thread that one of the Mother's posted that her doctor let her child have any clear fluids. She wants to know if she can have pudding? I am going to go buy her some ice pops to suck on. She did admit to me that her stomach has not hurt in 2 days. Yay I hope it keeps up and maybe she will not have to stay on the EN for to long.


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## izzi'smom

is caitlin getting her feeds at night? Izzi is not hungry, which may be partly her crohns but we feed her during the day instead of at night. 
Our doc said she can eat. When she wants to I let her (not often). We try to stick to low fiber low fAt low residue foods. He want 90% of her calories to be from the formula, which leaves her about 100-150 calories.


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## DustyKat

Hey Angie,

How did you go with the doc? 

I hope things are continuing to go well for Izzi and she is gaining weight! 

I wish your gorgeous baby loads of love and luck...:goodluck:

Dusty. xxx


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## kimmidwife

Hi Angie,
I am also wondering how it went? The MRI's are not bad Caitlyn has had several and they are quite helpful. Caitlyn only got 3 cans of formula down today. She is drinking her's so it is only during the day. She is supposed to do 7 per day. She also had a bowl of broth and some gatorade. I will make her drink one more can at least before bed. She also said her stools have become very loose but I know others here have said that is normal from drinking only liquids.


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## izzi'smom

i only spoke to the nurse, who will set up the MRI and bloodwork, which we haven't had for a while (we get it done at our Remi appts). She is still holding her own as far as weight goes. 
Izz's stools have become looser/lighter also. she's still having blood, though...hoping it will subside soon but doubtful.
I'm sure Caitlyn doesn't want to hear that if she drinks all 7 cans it's unlikely that she will be hungry, but it's probably the HABIT of eating that is tough to kick. We're lucky we don't have that problem right now...

My 20 month old has croup so when it rains, it pours...just managing to keep it together lol! I took him to the ER for a breathing treatment yesterday afternoon...it hits him hard and fast and I HATE it when he can't breathe. Figures it was 65 out yesterday (unusually warm) so I couldn't take him outside to alleviate his symptoms.


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## Crohn's Mom

Oh goodness...a baby with croup AND a daughter with an NG tube ! You're one amazing mommy and I hope you have some hair left ! LOL

Thinking about you 
I hope the bloodwork and MRE give you all some answers !


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## AndiGirl

I just wanted to send my love and concern.  I sure hope that your baby is doing better.


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## social me

Angie I am sorry you and your daughter are struggling so badly. I know how  it feels as a mom to see your child so ill and yet you can't do a thing to help them. How hard it is to see you children wheeled away as you stand there thinking. This can't be real? You are a wonderful and strong mother try to stay positive and take one hour at a time. We will pray for your family. God be with you.


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## QueenGothel

Hey I am catching up on izzy.  Sorry I have not been present just got over a 10 day stay at children's and a blood transfusion.  I really need to post what is going on with my DD too.  I hope Izzys is doing better I have a lot more to read to find that out.  Hugs momma!


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## izzi'smom

10 days...UGH!! I'll be watching for your post...hope everything is going okay!


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## QueenGothel

Well I played catch up I think.  I read they upped her dose, and I would have been ticked about that nurse as well. I probably would have turned into a total phsyco.  How has she been doing now that she has had sometime for the meds to work?  Does she still have the tube?  How was the holiday?  How are you doing?  Holding up momma?


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## izzi'smom

Ahhh...the tube was doing fine but they tried to advance it during her MRI and it came out of her mouth. I decided not to replace it (insertion was pretty traumatic-she cried for a week). Shortly after her last Remi dose she was syptom free x 2 weeks so  am eagerly awaiting her dose Thursday to see if it happens again. If not we will look into staring Tacrolimus. 
Our Christmas was WONDERFUL <3 I am so lucky!
I am holding up fine...sleep deprived and haven't worked out in months but I'll get there...


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## Dexky

That's the first time I've heard of Tacrolimus.  Is it like Cimzia?  How is it administered and how often??

I hope the remi works but you don't sound confident Angie.  Good luck Izzi!!


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## LilyRose

Hello Angie, I have been reading your posts, and i just wanted to say that you are doing a wnderful job. You are a wonderful advocate for Izzy and Izzy is doing a great job too. I hope the next does of Remi helps again.

I have a little boy (6) who has crohns - although mostly well at the moment. I know it is hard to see little ones so upset, and wanting to make it all better.

Take care,
LilyRose


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## izzi'smom

It's an anti organ rejection drug, taken daily orally, although it can be administered via IV. It's main SE is neurotoxicity, and blood levels need to be monitored, as too much doesn't work and too little isn't effective either. (So labs daily/every other day in the beginning). It's been studied a lot in fistulizing Crohn's, but our doc in Boston has used it regularly to treat refractory and steroid dependent cases also.
Thanks Lilyrose


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## Tesscorm

Good luck on Thursday!!  I hope you see a noticeable improvement very soon after!


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## kimmidwife

Angie,
I had never heard of that drug either. Is it safer then the biologics? (remicade, cimzia etc)


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## Brian'sMom

Angie,
I might've missed a different thread...but how is Izzi doing? DId the Remicade dose on 1/5 help?


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## Gabismommy

I am so sorry to hear about this. You are doing great. I will keep you and your darling girl in my prayers.


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## Mountaingem

:hug: I just wanted to commend you for being such an great advocate for your daughter! It must be so unbelievably difficult to go through this with your child. I was at the GI today and I could hear a little one in the next room crying through some procedure, and it made me want to cry...you Crohn's Moms and Dads are warriors! I hope your beautiful girl gets some relief soon!


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## izzi'smom

awww...thanks for asking-it means the world (((HUGS))). The increased dose didn't touch her this time, and she had a terrible night last night between incontinence and a cold she is coming down with. I kept her home from school so she could nap ( and so her cold doesn't get terribly worse) I called today for an appointment...we go in Tuesday to discuss if we are going to continue with remi 
I have been lurking...reading but not posting much. It feels like I have no new news...can't wait to share something good someday!


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## DustyKat

Your time will come Angie, I know it will...:hug: 

Good luck for Tuesday! 

:hang: Mum, you are doing fab.  

Dusty. :heart:


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## Dexky

Sorry Angie!  That's all we want for any of them, good news!  Have you and the GI discussed what's next options?  Changes or combos?


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## LilyRose

I hope you have a really productive meeting with your doctor tomorrow. Let us know how it goes.

Best wishes,
LilyRose


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## izzi'smom

Sooo...he wants to try Humira. After I research more (and talk to her dad), that is lol!
Remi really isn't working. She has had a few super urgent trips to the restroom, and 2 bad accidents (one at night, one at school, which she didn't tell her teachers about and waited an hour to get home )
He has promised to read up on LDN while I am re-researching Humira (it's been a while)
We are also getting some more in-depth testing done, and he would like to repeat her colonoscopy within the next couple of months, as he claims some kids don't have great inflammation markers in their bloodwork. 
He has ordered the Remi antibody test...anyone have it done? I realize it has to go to California but his nurse claims we can ONLY get in done in Syracuse, where there are *5* labs that will draw it "for free" (she claims otherwise we will have to pay $500 oop). I think this translates to "we don't have to get insurance preapproval if you get it done here". (Our  doc is in Syracuse, but I usually plan bloodwork ahead of time...she was tired/cranky at the end of our appointment, and I had already promised her no needles today). 
My poor son is sick with a fever and burping/vomiting phlegm...the back of my mind is spinning with "what if he has IBD"...make it stop LOL!
Enough of my mental wandering tonight...off to bed for me!


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## Tesscorm

Angie, I'm so sorry Izzi hasn't responded well to the remi.   Poor little girl, she certainly deserves to get some relief soon!!!

I hope you ALL have some better days just around the corner! :rosette2:


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## DustyKat

I'm so sorry to hear this Angie...:hug:...I so feel for Izzi, poor love...:ghug: 

I hope your little guy is feeling better very soon, :heart: 

Sending love and healing thoughts to you all, :wub:
Dusty. xxxxxxxx


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## Dexky

Wow, you got your hands full Angie!  Whatever decision you guys make, I pray it gives little Izzi a looooong vacation from crohns!  I know your minds buzzing with what-ifs about your son.  Is there a stomach bug known to be going around?  Good luck!


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## Brian'sMom

Angie,
So sorry to hear all the trouble you are dealing with. 
My son had the antibody test done with Remicade after he had the big allergic response on infusion #3 and it came back positive.

A question I'd ask the doc, doesn't Remicade and Humira work the same? Binding up the TNF. I think I heard somewhere that some crohn's kids don't have the big TNF problem, but I could be soooo wrong. I just remember our GI mentioning that since Brian originally responded really well to Remicade (Dose #1) that he'd also do well on Humira. They said his only problem with Remicade was that his body fought the ingredients of it(antibodies)
If this is helpful: After 1st infusion Brian was almost immediately 'cured' of his cramping and diarrhea. He was so happy. Then he came down with strep throat. They went ahead and gave him infusion #2. After that one Brian would say, 'I think Remicade is only kinda working'. By #3, terrible allergic reaction. Not sure if him being sick ruined everything or not. Infusion nurses were shocked that the GI doc went ahead with 2nd dose when he tested positive for strep the day before!! 
All behind us now, for what its worth, I like Humira better. I like that its all human and that its given at home. (Every 2 weeks sucks, but its fast and then over).


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## kimmidwife

Oh I am so sorry the remicade is not working! It is so hard to see our kids going through all this!


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## izzi'smom

IDK about a bug, Dex. I mentioned to his dad about taking him to the doc today as he was vomiting and his dad thinks it's a waste of time. But he's had a fever since Saturday...aww heck I'm just worried. He's had d off and on a few months, and the fevers/coughs come and go, but the vomiting is new. 
We are getting a HACA level tomorrow to check for antibodies for Remi...while we will probably try Humira regardless it may factor in to how much of a chance we give it. (Remi may have worked/may not have...she got really healthy for  2-3 weeks following the second to last infusion-but it may have been a coincidence).


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## Johnnysmom

Angie,

I know there is a nasty stomach bug going around my kids school.  A mom was telling me yesterday they were sick with it for days and the D was around for 2 weeks.  Hoping your son is feeling better soon!  ((((Hugs)))) I know this is the last thing you need right now.  Hope all goes well with the Humira. 

Tiffany


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## Dexky

izzi'smom said:


> He's had d off and on a few months


With Izzy's history, I can't believe your husband would think getting him looked at by a GI would be a waste of time!  Somehow, I think you'll win that argument


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## izzi'smom

Dexky said:


> With Izzy's history, I can't believe your husband would think getting him looked at by a GI would be a waste of time!  Somehow, I think you'll win that argument


Just to be clear...ex-husband to be lol!  We have been separated for about 2 years now but get along really well considering. 

He actually is usually on board with every hare brained idea I come up with lol!

Xavier has a checkup in a month and they have to take blood for lead levels...I will see if I can persuade his doc to pull an IBD panel also. ) At the very least it will put my mind at ease while being minimally invasive considering he already will be getting bloodwork.


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## QueenGothel

Sorry Angie that the remi didn't work.  This whole IBD world is hard on all of us.  I pray for your little girl when I pray for Rowan.  They really need to figure out why IBD is such a growing disease and find a cure.


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## izzi'smom

Poor kid was so worked up about bloodwork she threw up after  It didn't help that we had to drive 30 minutes to a lab that does the HACA for Remi levels...she had the whole trip to stew about it. Really interested to get the results and see if she has built up resistance or not...


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## DustyKat

Awww bless her...:hug:

I will be interested to hear!...:goodluck:

Dusty. xxx


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## Brian'sMom

Angie, I'll be interested too. Sweet Izzi...and so brave.

Mary, I agree about your statement about this being a growing disease. And with really young kids! I used to think I noticed it more because my son has it,but I think its on the rise. I already recently found out about 4 kids in my area...all under the age of 11 that are in the beginning stage of being diagnosed and doing the 'guessing medicine game' we all have to endure!!


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## izzi'smom

I remember telling our gi that I was shocked there was enough kids for four peds gi docs (we see our doc in a. Small city in upstate ny)...he said there was enough work for a fifth...ibd is increasing in the young ones (5-6 and under) and early teens according to him.
I *do* wish they'd figure out why as well as focusing on a cure...let's stop kids from *getting* this diseaase in the first place! I want all of our kidsto feel better but I *really* don't want to see any other kids suffering either. I have been looking into ways to fundraise for the ccfa this year...
Sorry for typos...its my phone!


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## Brian'sMom

Do you think its antibiotics? My son had bronchitis. It took 2 rounds on antibiotics to get him well. (They used 2 different ones)...immediately after...9 months of diarrhea. Then this diagnosis. The GI even said that 'triggered' it. After the fact, our pediatrician said that some illnesses go away in time and some antibiotics are over prescribed. 

Or do you think its all the over processed food? In some countries crohn's isn't on the rise.


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## Tesscorm

I think its a combination of all of the above...  'progress' brings lots of good and bad.  It's great that we have antibiotics and other meds but, what damage are they causing?   All the antibacterial agents we use (hand sanitizers, cleaners, etc.), they are creating a 'cleaner' environment, perhaps, but how does that affect us, both in regards to our immune system not developing properly and the chemicals themselves.  

I also think that doctors have so many drugs at their disposal now, that it's now common practice to just prescribe the quick fix, they've lost the motivation, knowledge and predisposition to consider diet, environment, etc.  Not blaming doctors here, just saying it's been a gradual shift in society.  When I was 5-7 years (going back to the 1960's), I had juvenile osteoporosis.  It reached the point that I couldn't walk.  I remember taking 'pills' (could've been vitamins though, or aspirins for what I remember now :lol, however, in the end, my main treatment was physiotherapy. AND, being Portuguese, my doctors told that my parents that I would gain big benefits from a trip to Portugal for an extended period to build up vitamin d from the sun and ocean.  My parents arranged this and I stayed with family for over two months.  I've seen, from home movies, the progress in my ability to walk before, during and after the trip.  Doctors, at that time, had fewer drugs to offer, I think they were forced to be more innovative in using what was at their disposal - diet, exercise, etc.

Sorry...  a bit of rambling here...


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## izzi'smom

Hmmm...Izz was on some topical antibiotics for thrush at about 1, but not anything else. She was a super healthy kid before this (didn't visit the doc except well child visits between 2 and 4 years). I even refused antibiotics after my c-section with her because I was breastfeeding. (I often joke that I did everything "right"...she ate organic, no refined sugar until 2, etc and look what happened! My son now eats candy for breakfast just so he won't get Crohns lol (kidding)) 
My doc has also talked about anti-bacterial stuff being a factor...I didn't use these products when I was pregnant with her but they are hard to avoid (most of the newer hand soaps, for example, are antibac). I still avoid them but you have to wonder...we survived for years without disinfecting every surface...
I also believe that the drug companies are in the docs faces, pushing their products. Unless we are there to advocate on our kids behalf to ask for "alternate therapies" (enteral nutrition, even LDN as it is a drug but not commonly used yet, and I was just reading about fecal transplant for c-diff and colitis), it isn't mainstream. I think for a long time many parents were fine with drugs (often I hear that docs prescribe antibiotics because the parent wanted the kid on meds, and it was easier to prescribe than argue), but we are a new generation of parents...look out! lol. 
Oh, dear, I think I've caught the rambling bug also


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## DustyKat

I have thought about why for so very long now and since Matt was diagnosed I have made endless comparisons. 

The things I can say with certainty are: Neither of my children had antibiotics until they diagnosed, none. They were both breast fed for lengthy periods of time. They had little take away food and a lot of the food they had was home grown. Neither drank soft drink to any great degree, in fact, Sarah none at all as she has never liked it. They drank milk but not huge amounts. The thing they drank and still do to the greatest degree is water. They had occasional chocolates and lollies, they were never the best examples of a perfect diet but they were far removed from the worst. They weren't raised in a sterile environment, the house has always been clean but not excessively or obsessively so. They have had pets and they have had regular exposure to farm life...sheep, cattle, chickens, shooting, riding horses. 

I eventually had to stop asking myself why and stop the comparisons and console myself with the fact that in our case the biggest piece of the puzzle was genetic. When Matt was in hospital in January last year he was reviewed by a couple of Crohn's specialists and one of them said he had only had one other patient that had their Crohn's exactly mirrored in another family member...a mother and her two daughters. So it is genetic then! As I said, I consoled myself with that and still do and guess what? I still question myself at times...I will read something on here and wonder if I am just using that as a convenient excuse so I can absolve myself that of any wrong doing I may done when they were growing up. 

(((Sigh))) I don't imagine the thoughts and what ifs will ever end until there is cure! 

Dusty. :heart:


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## Mountaingem

:hug: Poor Baby! Hoping things are improving for the little one!


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## Brian'sMom

I think I'd have to agree about genetic. I also was a mom who didn't even like to give tylenol...even down to not giving much soda. The only other family member is my husband's sister. I guess the other 'environmental' things are just the triggers, maybe maybe not.


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## izzi'smom

Agreed that it is genetic, although what makes it psoriasis (my grandfather and I) or Crohns (dd) or Graves disease (my niece)? Maybe that is another environmental link?
When the ped was trying to diagnose Izz EVERYONE asked about Crohns or colitis in our family but no one really asked about other autoimmunes.  
Heck, I know it doesn't really matter, for us anyway...still rambling!


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## DustyKat

I personally think there is a link between the autoimmunes...just as there is a link between asthma, eczema, allergies, bronchitis, hay fever and now they think migraine. As a parent you may have asthma but your child has eczema and yet another child may have hay fever and so on. Although asthma is not officially classified as autoimmune by some it is looked upon as one. I think they are all linked by some type of allergic response by the body which in turn elicits a flawed inflammatory response. 

In my way of thinking, which is likely flawed! :lol:, I can see that the autoimmune disorders may have a similar connection, a common gene or response perhaps, from which the autoimmunes are born and then each individuals journey has the potential to put them onto the path of one or more of those disorders. A parent may have fibromyalgia and a child Crohn's. 

Just my two cents worth!
Dusty.


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## izzi'smom

Dusty, our doc in boston told us this very thing...when I said we didn't have a famial tendancy for crohns he asked aboutother ai disorders. I mentioned my psoraisis and he went on to list a bunch, a few of which I recognized.


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## Johnnysmom

Agree on the genetics.  I had an autoimmune response (transverse myelitis) last February.  Johnny was diagnosed just 8 months later so I think we might have even had the same trigger.                                    I would also say that Johnny has a strong immune system.  He never had fevers as a child and was rarely sick.  I wonder if a strong immune system makes crohns worse or develop at a younger age.  I think about this stuff constantly but I know I am not going to figure out an answer.  I do thinks researchers will someday.  What a wonderful day that will be!


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## Tesscorm

I've wondered about the 'strong' immune system as well.  Stephen was rarely sick before Crohns, even compared to my daughter who seemed more likely to catch whatever was going around.  And, I've read so many parents here say that 'my child was never sick before being diagnosed with Crohns'.  Makes me wonder if their immune system has always been running at a higher level and then one day, a more vulnerable system in their body just gave in to the inflammation, be it the intestinal system, joints, lungs, etc.  And, perhaps what determines the more 'vulnerable' system is no different than what determines if someone is better at math or english - we each have our strengths and weaknesses.


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## DustyKat

That's an interesting though about a strong immune system...

Both of my children slotted into that mould. Never had antibiotics, had many a year at school where they didn't have one day absent, Matt didn't miss one soccer game or training for 9 years and I could count on the fingers of one hand, between the two of them, that they vomited. I well remember parent's talking about their children having a night of vomiting and me saying that my kids weren't vomity kids. Whoa, didn't that change! 

Dusty. xxx


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## izzi'smom

Interesting...makes me sort of glad my son has been sick for weeks (never thought I'd say that lol!) 
I'll have to ask other parents...wonder if there *is* a ink...


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## Tesscorm

Sad that, in hindsight, being a very healthy kid may have been an indication of trouble ahead! :ybatty:

And, while the idea that a strong immune system is interesting, we're all still left with the same questions...:ywow:  Why do some people have stronger immune systems, why would some people's systems be 'overloaded' and give in to inflammation when very young and others much older, what causes the overload or trigger, etc.  :yfaint: :ybatty:


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## Brian'sMom

I never thought about the autoimmune link! I also just asked family members about IBD. Never thought about all the others...We do have asthma, allergies in our families, my husband has mild sclerderma morphia brought on by stress. (Also an autoimmune that topical steroids creams get under control, etc. I learn so much here


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## izzi'smom

Got the ball rolling for Humira today...working on getting insurance approval. Still waiting on bloodwork results. 
I'm looking into getting on Humira myself for my psoriasis also...has a high rate of "cleared skin" and a great "improved" rate also. Steroid creams aren't cutting it for me these days (I have been using them for 10 years). It is SO much easier to make a drug decision for myself than for Izz! (I have held off on stronger drugs for 8+ years...since a doc prescribed methotrexate and its list of side effects scared  me off. Metho STILL scares me, for myself or her!)
Maybe we can give each other our shots lol!


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## Jenn

Wow, we are the complete opposite. I am the laid-back mom, Alex ate all kinds of junk food, fast food, candy, it's still what he prefers! I feel SO guilty all the time. He goes on food jags, like, as a toddler ate store chicken nuggets and broccoli for lunch every day for like a year. He's the pickiest eater in both texture and trying new things. He will eat healthy, but comes undone when he has to drink an Ensure. He hates carbonation, so no soda ever, nor fruit juice, only water and some milk. 

He was always sick and on antibiotics a ton and was in daycare.  I had them when very first pregnant with him for a sinus infection, then again after his C-section. Then he had them once/month his first full year for horrible ear infections. Ear tubes helped, but then it was tonsils and adenoids out for sleep apnea and constant inflammation. Then it was asthma. Each time, it seemed necessary, but now I wonder if I couldn't have done something differently. Seemed to be a strep infection of his bottom that finally triggered Crohn's. What is interesting to me is that once his immune system finally kicked in, it went into overdrive, he has hardly been sick at all since before his first fistula - his first sign of Crohn's.

Definitely genetic. No other family history of IBD, but IBS, yes, diabetes, migraine, seborrheia, eczema, asthma. sigh...


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## izzi'smom

So it seems to *really* not matter how you raise 'em...izz ate a ton of fruit, had very few processed foods and nofast food until she was 3.
When is alex starting humira? We are waiting for insurance approval.
 I suffer from ibs too...darn stress!


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## Eve_L

Oh my, your daughter is so beautiful.  My heart goes out to any child that has to deal with such a horrific illness.  I'm sure I speak for most people when I say this is hard enough to cope with as an adult.

I wish you all the love and luck in the world xxxxxxxxxxxxxxxxxxx


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## QueenGothel

My mother has raynauds, I have hashimotos, my sister has graves, sister in law has RA... Lots of autoimmune diseases in my gene pool.  hoping my youngest whom suffers from eczema and is lactose intolerant doesn't have other issues.  Angie didn't you say you had your son tested for IBD? Was it just a blood test? Did you take him to a GI or just his ped?


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## QueenGothel

Sorry two comments playing catchup.  Rowan is in the hospital and they cannot explain the elevated WBC or the fevers.  They told me today that her immune system elevates when she becomes inflamed. that is what they think as of now bc they keep taking cultures and cannot get her to grow anything but have her on both flagyl and IV antibiotics. No reason just put her on them. Just in case.  She has taken amoxicillin once since she was born and it was not even a whole dose.  I remember getting a call from the pharmacist saying they were waiting on the doctors call bc it was not even a high enough dose to do anything.  I think they just gave it to me then to shut me up thinking I wanted it but I didn't I just brought her in bc of the fever lasting more than 3 days.  Stupid.  They really need to figure out what is causing all this auto immune stuff.


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## kimmidwife

I am so sorry to hear about Rowan. I hope they figure out what is going on soon!


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## QueenGothel

Well the reason I meantioned it is they were talking about having a crazy strong immune system. They are completely baffled about all her negative tests and fevers.  They are thinking it is her immune system in overdrive.  I really think you all are on to something with this conversation.


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## izzi'smom

Thanks Eve!
Mary, he doesn't go until the beginning of March...and it's just his well child check up but I am hoping they will draw an IBD panel for me along with his lead levels. He actually had a normal bm today for the first time in a month, which makes me feel a bit better, but still...a few extra tubes of blood wont hurt him and will help to put my mind at ease at any rate. 

Izzi's WBC was elevated when she was flaring...(our ped originally thought it was an infection). I remember the hopeless feeling of her bleeding and stuck in the hospital and being unable to help her.    You must be exhausted! Our situation was different because she didn't need transfusions...I insisted on taking her home as they weren't doing anything for her...and I think the stress of her being hospitalized was making her worse.  I am hoping things turn the corner for you soon. 
Agreed about the autoimmune...there seems to be a bunch of links but I wish they would figure out a bit more about it, and soon !!


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## jmlport98

I'm so sorry  I hope she gets better!


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## carolhew

Here is hoping Rowan starts to feel better soon! :rosette1:


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## QueenGothel

Thanks everyone.


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## Jenn

> izzi's mom: When is alex starting humira? We are waiting for insurance approval.
I suffer from ibs too...darn stress! 

Frustrating process! our insurance (which is really great actually) considers Humira a "specialty drug", it wasn't enough for the GI office to do authorization, we also had to go through a specialty pharmacy. Even though it was marked urgent, there was some mixup for 2 days, then they don't process during weekends, so I've been calling every day this week and we should finally get the meds delivered Fri. The GI nurse will give his first dose, then we will have a few home nurse visits to train us. He'll get it every two weeks as long as he tolerates it and it works. it's been 2 weeks since we heard he had antibodies to Remicade and his inflammation has been up since new years', so I'm beside myself afraid he'll get a new fistula in this lull, as he got one in each of the last two Januarys.... sigh.

I hope you get started soon too and it works well for Izzi!

Jennifer


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## Jenn

oh, forgot to add, that at one point I was dx'ed with IBS too, but found it's more of a wheat sensitivity than true gluten intolerance. Amazing how once I started asking around, I hear of one cousine with gluten intolerance, another with fibromyalgia. We also have hay fever and skin sensitivities. It's nutty.


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## Brian'sMom

I'm pretty sure Humira is always handled thru a specialty pharmacy. Ours is delivered to our door by UPS. Last year the company used FED EX. Both overnight deliveries since its refrigerated. I always lean on our GI clinic to push insurance thru. They are well versed in getting what they want for their patients.


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## Dexky

Kathy, we started getting 3 month supplies this last time.  I guess they feel the need to save on shipping costs...so they're sending $18K worth at once.  Hell, that little box is worth more than both of our vehicles and half my house


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## Brian'sMom

Mark,
I wish we could do that! The one small box of 2 pens comes in a big styrofoam thing in a larger cardboard box. (This is silly, but I don't like throwing the styrofoam in the trash!) I also keep the freezer packs!! My freezer is getting full of those dumb things! (They keep a cooler of beer pretty cold tho!!)

Our electricity went out in a storm once. I only had one pen in there...if that happens to you, whoa, big$$!!


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## izzi'smom

Dexky said:


> Kathy, we started getting 3 month supplies this last time.  I guess they feel the need to save on shipping costs...so they're sending $18K worth at once.  Hell, that little box is worth more than both of our vehicles and half my house


:rof:
I wonder if there is a street market value for Humira...I've got some bills I'd like to pay off 

We got approved for Humira but are waiting for the doc's office to decide if they should call the pharmacy or if the insurance company is going to do it. :angry-banghead:

We got sryinges instead of the pen to be able to control the injection better...but I am wondering what you do if you get a bad dose/break the glass/pull back and get blood...if it is an overnight delivery I am guessing it doesn't matter if your injection is off by a day or two?

I am also still waiting for lab results...she was going to "check his office" the last time I talked to her and I haven't heard back. Maybe I should ask them to automatically send me all of her results


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## Brian'sMom

I've heard that if you inject slowly it does help with the 'burn' of the medicine. I just think the pen is easier and less hassle. And EMLA numbing cream works wonders with 'not feeling' a bunch.
My husband has given the shot for the last year cause i didn't think I would ever be able to do it. But last Friday, I gave the shot! It went beautifully.At this point, I think we could learn to use a syringe, but Brian would freak...I think! Also, kinda don't want to mess with a system that is already working 
I'll be curious how it goes for you and Izzi. Angie, did you decide to use it yourself for your psorisis? I would love to 'know what it feels like' to get a shot of the Humira.


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## izzi'smom

I hear that the pen makes a loud pop, and I am told at times it makes the kids jump/makes it difficult to hold still x 10 seconds)...Izz is sensitive to noise. I have a graduate nursing degree and am comfortable using a syringe//I think lol! She hates the EMLA...she has a reaction to it (turns red) and the waiting is the worst part...it is a reminder of what is to come lol! I am glad you gave him his shot...hard to be the one to inflict pain, I think, but B must be getting used to it by now, right?!
I see my dermatologist on Thursday. He has been pushing me to use other drugs for the last 8 years...I am fairly confident he will be OK with it. You KNOW I will keep you posted.  I am looking forward to ditching twice a day topical steroids.


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## DustyKat

I love the pic Angie!!! What an absolute angel!!! :rosette1::rosette1::rosette1:

Dusty. :heart:


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## Tesscorm

Yes, great picture!!  She's adorable!:queen:


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## izzi'smom

TY...I should change my avatar but I love that pic of her...and it was just before her diagnosis. I will have a hard time letting go of it...dumb the things I choose to cling to lol!


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## Jenn

Alex had his loading dose of Humira yesterday, it was pretty bad. They did two epipens at the same time, one on each leg. I think the pop scared him, I didn't expect that and he howled, it really hurt. It was shocking. We tried numbing cream, but another friend recommended ice packs and that might've gone better. It was quick though, I put ice packs on immediately after and that helped. The nurses do another epipen in 2 weeks, but then we have to switch to the syringes, he's on the lower 20mg dose for maintenance and the epipens are only 40mg. I know I'll just have to put my mind to it, but it'll be hard.


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## Tesscorm

I feel terribly for you and Alex.  It must have been so hard.    Hopefully, once you get to the syringes, they will be easier to tolerate.

I'm sorry you have to do this...  it's heartbreaking when we have to let our children go through painful procedures.


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## izzi'smom

I am so sorry...poor Alex (((HUGS))). I am going to try to remember to bring ice packs to our appt with us...thanks for the reminder! Keep me posted...how long is the injection site sore for? I have to remember to go get Izz a "prize" for doing well...works like a charm.  Are you going to be doing the injections yourself next time? Hoping it goes well for you


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## kimmidwife

Those pen shots really hurt. My daughter could not tolerate them. They did not offer us the option of a syringe. We tried the ice but it did not help her. Someone else on the forum mentioned the numbing cream but you have to put it on at least 30 minutes prior to the shot if you are going to use it. Our doctor did not even offer it to us and I did not think of it until after she refused to d anymore.


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## izzi'smom

Our HACA test came back...no Remi in her system at all. Glad to see that moving on was the right decision. Should be receiving a call in 24-48 hours to set up Humira delivery :dance: Maybe *this* will be our wonder drug!!
Coincidentally, other than severe belly pain 3-4 times daily, her bowel habits are close to normal. (Well, the *new* normal lol! Normal to IBDers would probably make the outsiders cringe) :ytongue: 
*SO* wish I could find a rhyme or reason to the pattern!!


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## izzi'smom

Kim, I found out about the sryinge on here, but read through all 70 pages of the Humira studies I printed from online and found more info there. So sad we can't trust our care providers to keep us well versed on all of the options...it's not as if you don't have enough going on!!


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## Crohn's Mom

Great news !
Best of luck with the Humira ! I hope it's very successful!


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## Jenn

Thanks, I feel bad that I can't help him more with it. He's a howler, I try to get him to breathe.... It's also hard because generally, he doesn't feel bad. Mostly fatigue. He's 10 and so in the moment, he's not aware that feeling crummy isn't normal.... The next dose is also by the nurse, but will just be one shot. Then I think we have a home nurse come for a few visits to train us. .... on a better note, I let him sleep in today and miss school and he's bouncing off the walls. Guess it's working already. He says his legs are sore at the site when he walks, but it's not stopping him from jumping around while playing his video games.


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## Tesscorm

When my son was about 12, he hurt his knee a had to have it drained.  It's a painful procedure and takes a few minutes to complete.  He was in a lot of pain so while the doctor was draining, I had him focus on me and count backwards from some odd number like 67 but count every other number.  It forced him focus on something else and seemed to help.   I hope the next dose goes a bit better.


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## Dexky

Jennifer, have you noticed any redness near his shot sites?  My son takes benadryl a half hour before and again the next morning due to site reactions.  He hasn't had any since.  He uses an ice pack and though it still burns, he has never let it bother him much.  I hope it works so well for him that Alex can say it's all worth it!


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## Brian'sMom

I'm responding to several posts here: I do think the 'click' of the pen bothered Brian at first. He yells a karate yell thru it now, so on a count of 3 he's already yelling, before the click...none of us hear anything!! We also always use ice plus the numb cream. We move the injection site around. Seems like higher up and to the outside/inside of his leg hurts the least. Straight on is when he complains most. Before we ice, we mark visible capillaries so we don't hit them because that causes extra pain. We don't have site reactions anymore...seemed like once allergy season was over, so was the site reactions.
BUT MOSTLY, Brian has gotten used to the whole thing. Its not that big of a deal anymore.
Hope everyone joining us in the Humira group have great success!! Its given my son, so far, a flare free life.


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## stardreamer22

Angie,
I'm literally sitting here in tears going back and reading to the beginning of this post.  I have a beautiful 5 year old little girl and I can't even begin to imagine her having to deal with this awful disease.  It is just so wrong that someone so young and beautiful has to struggle with this.  I am sending so many good thoughts your way.

Granted I was giving the injections to myself, however i was on Humira for 2 1/2 years and never once struck a vein and got blood.  So hopefully you won't have to worry about it.  And while it's not ideal you can give the next dose as soon as you got your replacement if you needed.  I did end up calling the toll free nurse line one time as well as they were pretty helpful if you ever have any questions.

Sending good thoughts your way!!!!!!!!!!


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## DustyKat

@Angie - I so hope Humira is the wonder drug for Izzi, you both deserve relief and to be able a breathe easier. Fingers, toes and everything else crossed! :hug: Good luck!

@Jennifer - I'm so sorry to hear that Alex had a rough time with the injections, poor love... :hug: I hope more than anything you are able to find a method that eases the pain come injection time and that the bouncing off the walls continues unabated for a very long time! Good Luck!

Dusty. :heart:


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## Jenn

Yes, will try the ice pack and try a different site. we did sort of go straight on mid thigh. He has small red marks at the injection sites, only one bruised up a bit. I too asked the doctor about using Benadryl beforehand as he did with Remicade, but she didn't think it necessary. Might relax him a bit tho!  The karate-chop yell is a great idea. The next one should be at home, so maybe that'll be easier too. I did point out to him a few times how he's feeling better must be from the medicine, so hopefully he'll realize it's worth it. 

stardreamer: yes, I think we all agree with you, it's really really unfair and heartbreaking. We just take it all one day at a time. Poor kiddos. But there's really terrific medication out there to keep them healthy and that's what is important to focus on.


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## izzi'smom

Just got off of the phone with the pharmacy (mini-vent...whose automated service called to tell me they needed to speak with me and to call right away...only to be put on hold for 15 minutes...ARGH!!) and the rep forgot to "release" the order so it may not come tomorrow...BLAH!!
Maybe I can hire somebody to deal with all of this phone bs so I can sit here and snuggle my kids instead of giving myself heartburn stressing out about things 

Awww, thanks, stardreamer! I may commiserate a lot on here but I truly feel that we could be worse off. Crohn's is an awful disease but she has the potential to go far in life, unlike some other kids that are far sicker.  I often wonder how difficult it would be to parent WHILE having Crohns...I am also thankful that I don't have it...I am sure it could have been me!


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## Jenn

I hear you iszzi'smom, about the phone calls! Is it Walgreens Specialty pharmacy? That's who we had to go through. They said it was marked "urgent" but still takes 3 business days and they are backlogged. ugh. I also get annoyed that the GI nurse will call at home when I constantly give her my cell phone to reach me. *vent*

So, Dexky, last night one leg started in with a prickly red rash all around the injection site. the other leg has a little. So we gave him some benadryl and I'll report it to the doc. Sounds like a common side effect for Humira. He got these prickly rashes on his arms after his last remicade dose, but also after a standard blood draw - which should have no allergy. maybe it's from the stress of it, like hives.


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## izzi'smom

We received it!
Through care a script...and it was sent from FL to NY overnight...weird that there isn't a closer pharma. Fingers crossed for tomorrow!!


----------



## kimmidwife

keeping my fingers crossed!


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## Crohn's Mom

Fingers and toes crossed !!
Best of luck !!


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## Tesscorm

Good luck!!!  I hope it goes well for Izzi!


----------



## dannysmom

Good luck!!


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## DustyKat

Everything crossed Angie!...:goodluck:

Dusty. :heart:


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## imaboveitall

This is worrisome enough with a teen, your girl is just a little child, that's heartbreaking to me.
Since my big overgrown girl and your tiny one will both be starting Humira tomorrow, I'll be reading to see how it goes for you guys.
No comparison as V is like an adult nearly, but I'm sure we share the same concerns.
Best of luck.


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## izzi'smom

Totally a comparison,iamaboveitall...they are our little girls, no matter their age! I think some aspects of cd are easier with a 5 year old (fecal incontinence is almost common , social concerns are easier to deal with). Wishingv all the best...it is a tiny needle so hoping it isn't too bad...hoping to hear good news!!
To all the rest of you well wishers...thank you so much, and I'll post tomorrow night about how we did!
I visited my dermatologist today and got a script for myself...I won't be too far behind her!


----------



## imaboveitall

Here I am at 5:45 a.m. like a nut. Barely slept.
I hope both of ours feel excellent by two hours post-injection.
I'm choosing delusion at this point.


----------



## Dexky

I hope it works wonders for Izzi Ang!!  And Violet too ^^ mom!  Welcome to you by the way.  What's your name cause I ain't typing that all out 

Today is EJ's dose day as well as Kathy's Brian.  Maybe, we'll all end up on the same schedule  We can all help each other remember!!  Good luck to you both!!


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## Tesscorm

Angie, I hope the injection was tolerable for Izzi :Karl:

And, for all your other babies as well - Violet, EJ, Brian :Karl:

More than anything I wish none of us had the need to know or experience any of this!! :mad2:


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## imaboveitall

Thanks, girls.
Dexky, I'm Julie, I should add that to my signature.

I hope little Izzi didn't feel as much pain as V did. I've heard a spectrum of answers from folks on that, from barely felt it to agony. V's first shot done by nurse was the worst; V did the next three HERSELF and said it hurt far less when she injected it very slowly. 

IzzisMom, I thought of your little kiddo when V started crying with the first shot. I hope she did great and soon feels great.


----------



## izzi'smom

We are home...she watched videos on the way there to distract her and we met our doc on the walk to his office.  She cried for about 10 minutes (while I was icing her legs), vomited, then took the shots like a champ. A few tears about halfway through the injections (we did two; one in each leg simultaneously), but as soon as we were done she was fine!
I practiced on myself last night at work with a plain needle...I couldn't even feel the needle (and I couldn't find one as small as they are). It must be the injection that causes the pain...she didn't complain at all while I was pulling back to check for blood...so I am guessing that you can administer it pretty slowly. 
I will be obsessing at work tonight wondering/making sure her dad checks her sites to be sure they are clear!

Dumb question...why don't all medical offices have puke bags/emesis basins? This is the second time she pukes on herself because they couldn't find something for her to puke in, and it happened to my son last month also. I am going to start carrying one in my purse lol! I already keep them in the car...

Dr. Rivera is optimistic about Humira because her HACA was positive.  Her CRP is only slightly elevated at this point, but her vit D, calcium, and iron are still a bit low so we'll be getting supplements. 
An optimistic day!!
Off to sleep before work comes around again


----------



## imaboveitall

Oh excellent news! Yes, V said the needle was painless, it was the drug that killed. SLOW injection rate helped a LOT, she said. 
Izzi's nurse and you both must have had good technique.
Awesome to hear. Now let's hear that they are back to normal living and symptom free...straightaway.


----------



## carolhew

Yay!!!! I have been following this post for awhile now and these kids are giving me strength!! I will be starting Humira shortly and maybe we will all be on the same schedule. I hope everything continues to go well!


----------



## Jenn

So glad to hear the injections went well for Izzi. Sounds like the anticipation was the hardest for her? I hope Humira helps her feel better quickly!

Can she take pills? I found chewable iron for Alex: Natural Factors Easy Iron
and his calcium/vit D is: Nutrition Now Calcium Soft Chew

Jennifer


----------



## kimmidwife

Angie,
Glad to hear it went well. Keeping my fingers crossed that it works for her!


----------



## izzi'smom

She stinks at pills. We discuss it about once a month, but she makes herself vomit. (We were supposed to take a pill for her colonoscopy about a year ago...epic fail.) We have since tried mini m & m's, along with guzzling 16 oz of her fave drinks...I have no idea how but she manages to keep that tiny stinking piece of candy on her tongue lol! I need to watch that video soon.
She's already on ferrous sulfate, but I looking to see if we could decrease the amt of meds she takes...oops looks like she's getting a couple of extra supplements!
I just looked...she was diagnosed just over a year ago- 1/30/11. We should have had a bathroom party 
Oh, and there was blood in the toilet today for the first time in a month or two...c'mon, Humira-work your magic!!


----------



## hopeful mom

Poor baby girl. I will be praying that tomorrow will be better for both of you. I know the pain your feeling, I have been there. My daughter was diagnosed at 8. When my daughters bottom gets sore she uses A&D which seemes to help.

Sorry, I'm still new at this. I thinks my dates are off.


----------



## izzi'smom

Thanks, hopefulmom! My original post in this thread was a few months ago...but I swear by bordeaux butt paste for my kids 
Looking for help deciphering lab results. Her platelet count is listed as a critical result (534 x10E3/uL)

Crp has decreased since march (from 6.8 down to 4.8 mg/dl) 

Neut, lymp, and mono are all newly abnormal, plus her creatinine is low, alk phos is high,wbcis high.. vit d is low (10) and looking back it was low in march...kind of upset he didn't already have her on a supplement. :banghead:
 Off to research these but any additional insights welcome


----------



## izzi'smom

So I have learned a few things (always good ) 
Alk phos levels could be due to pentasa (although we have been off for a month at least OR vit d deficiency.

Not sure why bilirubin and creatinine are mildly low.think br tends to be high in ibders)
Decreased mch may be due to iron defiency
High platelet count common in ibd as platelets are increasingly believed to be involved in inflammation (' thought they were just for clotting)
Obviously her white count is off, and everything assoc with it.
I don't quite understand the segs/bands/ lymph ratios, although her lack of band eoson and baso may be steroid related.
Now to get her on some supplements and try to get a few of these #'s closer to normal!


----------



## DustyKat

So fab to hear all went well Angie! Izzi is such a trooper, good on her!...:medal1:

Alk Phos levels are often elevated in children/teenagers when they are going through a growth spurt/puberty. 

I hope this is Izzi's wonder drug hun and she is soon feeling on top the world! 

Dusty. :heart:


----------



## imaboveitall

Izzi'sMom, V takes LIQUID ferrous sulfate, you may want to ask your doc about this. Easier absorption and  you can give in several smaller doses over the course of the day so she needn't swallow a ton of the stuff all at once, and  easier on the stomach that way. She also gets LIQUID Vit D3.
V's platelets are always high, that's part of the inflammatory response. Her RBC, MCH and MCV are always off like Izzi's.


----------



## Brian'sMom

Angie,
Glad it went well. Like Mark said, Brian and EJ are on the same Fridays! We injected last night too.
The humira has a sting to it, but at least it doesn't last long.


----------



## izzi'smom

imaboveitall said:


> Izzi'sMom, V takes LIQUID ferrous sulfate, you may want to ask your doc about this. Easier absorption and  you can give in several smaller doses over the course of the day so she needn't swallow a ton of the stuff all at once, and  easier on the stomach that way. She also gets LIQUID Vit D3.
> V's platelets are always high, that's part of the inflammatory response. Her RBC, MCH and MCV are always off like Izzi's.


Sorry...she is already on liquid fs. When I say she stinks at pills, I mean she doesn't take them lol! Thanks for letting me know vit D comes in liquid form, also...I will make sure they order it that way.  The fs tastes terrible, but if we mix it with the right juice she doesn't complain much.


----------



## Tesscorm

My daughter has been low in iron for a long time now, our GP told her she can discontinue to take the iron supplements she has been taking as it obviously isn't working (ie she's not absorbing it) and she suggested we speak with the rheumi about it and get her opinion.  But, I'm not sure about this advice???  Doesn't make sense, wouldn't some supplements, even if barely absorbed, be better than none?  How much of the liquid iron is needed per day?

By the way, both Stephen and Emily take the liquid D3.  One drop is 1000 IUs so very easy to take...


----------



## imaboveitall

Tesscorm, the dosage may need to be super high.
Violet gets 250mg ELEMENTAL iron per day, that is a sky high dosage.
Not 250mg ferrous sulfate, 250mg elemental iron.
Her supplement is: 44mg elemental iron in each 220mg FS per 5ml, and she gets 28ml per day.

Some folks figure dosage on the FS content, not the elemental iron content and don't give enough to replace the huge losses/malabsorption these kids have.


----------



## QueenGothel

I used that super chlorophyll powder and put it in PB.  It helps a lot with anemia. I got mine from unicity. Rowan went from 9 to 13 in 3 weeks.  But hey I am not a veteran, but somehow I have graduated to senior member. lol I was also giving her ferrous sulfate... I read that ferrous gluconate absorbs better. Again I am not an expert but I am a big researcher. I use .orgs and .govs most the time so I can fire back at the doctors.  Since they are not trained in nutrition.


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## Catherine

Izzi's mom

Do you have iron studies and full blood results. Are there any notes/comments on the results.
catherine


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## izzi'smom

There were no comments...she hd the ibd panel plus vit d levels done this time


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## imaboveitall

IzzisMom, did they do ferritin as well?
And it's been two days post injection. I want them back to normal already. :biggrin:


----------



## izzi'smom

No....I love our doc but I have to push a bit to get testing done. While I don't want them drawing blood every week just to draw it (she's 5 and it's scary) I *do* want to keep an eye on her.
I am not sure how Izz is faring...I am in the middle of my work week (I work 7 days on/ get 7 days off midnights) and only have her for 4 hours a day 
How is V doing?


----------



## imaboveitall

No change here, she still feels like a dishrag. 
No bad reactions, though.
I just don't know what we'll do next if this 3mo trial fails.

I  was just thinking of what V has done to assess her always low iron stores.
He always does ferritin, iron binding capacity and iron level itself.

He does fecal lactoferrin often. I asked for that to be done in two weeks after the next injections, and every four weeks hence. Nice noninvasive way to assess gut inflammation. If V's doesn't drop I'll be d/c'ng the Humira. It's the main way we assess her level of inflammation, if your doc doesn't do it you may want to ask about it, since it just involves a stool specimen.

Her doc always asks me if I want to add any tests and orders anything I ask for. He is a rare gem, he gives all pts his personal email and answers me right away usually. Thank God for him, I hear all kinds of stories about uncaring and idiot docs, and have worked with more than a few.


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## AZMOM

I'm late here but Claire's doc doubled her iron. She takes the ferrous sulfate (324 I think) twice a day. Just got labs back last week. Ironically her folate numbers are high BUT best H&H we've had in months. 

Hugs,

J.


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## DustyKat

Hey J,

Have you seen the wiki thread re: anaemia of chronic disease?...

http://www.crohnsforum.com/wiki/Anemia-of-Chronic-Disease

Dusty. xxx


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## izzi'smom

J...glad her h & h is looking good  
We are supposedd to be doing ferrous ulfate 3 x a day but we only do two...I can try to also give her a dose at lunch to up her levels. I just feel bad as I. Am always giving her meds.
Thanks for the link, dusty...what would we do without you??? I knoow there is a ton of wonderful info here...why do I always forget to use it?
Hard to tell if the occasional fatigu is from iron deficiency anemia or just the crohns, and the anemia is just from the inflammation. Ill take a closer look at her bloodwork.


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## imaboveitall

Dusty, an excellent link.
I just checked V's TIBC, ferritin, tranferrin and iron against the info in the link and her results are right in line w/anemia of chronic disease.
Thank you for that!


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## izzi'smom

Just need to whine a tiny bit...pharma wont fill script for D3...one more thing i need to pay for oop-argh!


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## DustyKat

There is a discussion about anaemia of chronic disease happening here...

http://www.crohnsforum.com/showthread.php?t=32352

Good luck guys and Angie, that sucks hun...boooooo! Yet another hurdle to overcome. Grrrrr

Dusty. :heart:


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## imaboveitall

You rule. :thumleft:


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## izzi'smom

Shot #2 tomorrow  She seems a bit less apprehensive about it...says it will only pinch a little for a second and then she gets her ponies 
We see the GI in a little over a week. 
Still no word on my Humira...I am told we are waiting on insurance approval still. Story of my life loL!
Haven't seen any major change, although I wasn't expecting one yet. No blood, only a couple of stools a day, still having pain. 
Down to one dose of Pred a day, though, and two weeks until done!!
Hoping she can get off of the Pred for a while this time...those poor swollen cheeks!


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## Crohn's Mom

Well I'm glad things are holding steady for now 

Bring on the end of the dreaded Pred right ! LOL
You gotta love to hate that stuff !

Good luck with tomorrows dose ~ seems like she has a great attitude about it!


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## QueenGothel

imaboveitall said:


> Tesscorm, the dosage may need to be super high.
> Violet gets 250mg ELEMENTAL iron per day, that is a sky high dosage.
> Not 250mg ferrous sulfate, 250mg elemental iron.
> Her supplement is: 44mg elemental iron in each 220mg FS per 5ml, and she gets 28ml per day.
> 
> Some folks figure dosage on the FS content, not the elemental iron content and don't give enough to replace the huge losses/malabsorption these kids have.


Holy moly that is a huge dose.:eek2:  Rowan though 4 has severe UC and had 4 blood transfusions in 3 months and takes 325 Ferrous sulfate 30 el iron I think.... That is a crazy high dose.  They told me to find Rowan 15mg of ele iron... Ferrous Gluconate so she can take it twice a day... Supposed to be easier on the guts per new docs.  I really like these new docs.


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## imaboveitall

I was wondering how Izzi was faring. NO change for Violet yet, next shots tomorrow too!
Her 12y/o sister made her promise to wait until she gets home from school to do them so she can watch. :eek2:

Mary, yes, a HUGE dose, the druggist questioned it at first and no wonder. She's been at that dose since dx, 3.5 years, so it's actually a lower dose per kg than when she started; she was 59lbs then and is 128lbs now.


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## QueenGothel

And now I feel like a Dufus bc I posted too early.  I read on and now am caught up sorry for the rant.  Ignore last post. :ybatty:


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## Tesscorm

Angie, good luck tomorrow! I hope the dose goes well and it is just a VERY quick pinch!


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## DustyKat

Good luck Angie! I hope all goes wonderfully well!...:goodluck:

Dusty. :heart:


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## izzi'smom

SHe did pretty well...but I didn't lol! She was crying and I guess I didn't check the syringe well enough...when I pulled back to check for blood I got an air bubble that had been in the needle. I called the pharmacist, who told me to go ahead and restick her with the same needle (and .6ml instead of .8ml by the time I got done expelling all of the trapped air). She handled it like a champ and now I know to check it more carefully for air (I am super used to handling plastic syringes but have never touched a glass one...I think it makes me nervous. Well, along with her crying lol!)
She fussed a tiny bit when I first pushed...she asked me to do it more slowly and was fine after that


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## Tesscorm

What a sweetheart!  That's amazing that she can handle it all so well!  And, amazing on you too, mom!:rosette1:


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## QueenGothel

Good job mom and izzi.  How long until u know if it works well for her.  Has she had any releif yet?


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## DustyKat

Awwww, bless her...what a champion! 

	
	
		
		
	


	





Dusty. :heart:


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## izzi'smom

Hmmm...she had a red itchy patch on her cheek today...anyone experience this after Humira? I emailed a pic to her doc but her nurse didn't seem to think it was related. (I didn't notice it until around 12...and her shot was around 10...but I wasn't really paying attention to her-I know, bad mama lol!) I applied some topical Benadryl and told her dad to watch her tonight.
I am not sure how long, Mary...she is also almost off of her Pred (down to .5ml today and done next Friday!!!!) so time will tell. Her disease is so wishy washy...makes me wonder if there is something in her diet but after months of food journaling I can't find a link. She is really stable right now, I guess (only in the bathroom a few times a day but awful pain a few times a day also). I guess I just wish "stable" was "better", know what I mean??


----------



## QueenGothel

Unfortunately yes I know what ya mean.  I am saying extra prayers for izzi tonight.  I find a connection with Our Lady of Lourdes... Without that I wouldn't have made it.  It comforts me to see Rowan with Jesus and Mary.  I will picture izzi and row with them for now on. I pray the medicine works for her. Your doing great mom.


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## Dexky

EJ has never had any reaction other than itchy red skin around the injection site.  I hope it's nothing Ang!!


----------



## Johnnysmom

Angie,

Until Johnny was off the Prednisone he didn't really become "stable".  I don't know how that drug effects them but Johnny had normal inflammation levels but would still vary every couple of days with his bm consistency, sometimes blood, sometimes nausea, etc.  Nothing seriously disturbing but I was constantly afraid he wasn't going to do well once he came off.  It has been two months now since he has been off Prednisone and he has evened out considerably.  The Dr. also told us he considers Johnny in remission now and we just got that news yesterday.  So I would be hopeful that you will see some positive changes once she is off the prednisone.  It might take a bit longer though because she has been on it longer than what Johnny was on it.  I know it doesn't really make sense that she would be better after the Prednisone and maybe it was just that the 6mp took 4 months to really get going in Johnny but he is doing better now.  

Praying Izzi does well with Humira and the Prednisone taper goes well!  

((((hugs)))))
Tiffany


----------



## Tesscorm

Angie, I hope the itchy patch is gone today!  And that the Humira and tapering will bring her to an 'improved' stable.  She really deserves to be feeling better soon. :rosette2:

Tiffany, great to hear Johnny's is remission! :congratualtions:  Must have been wonderful to hear the doctor say that!


----------



## imaboveitall

JMom, that felt good to read...REMISSION for your boy. I LOVE success, it keeps me going. 

IMom, could it be eczema showing up? 
YAY IZZI for taking her shots so well, just a little kid, and not freaking out over it is awesome to me. Looking for a success post from you guys soon, followed by one from me!

V did her shots too; she kills me with her coping ability.
:heart: to all these kids and their strength they shouldn't have to use. *sniff*


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## izzi'smom

Tiffany...how exciting!!!!! I am so thrilled for you...give that boy an extra squeeze for me!! I am bothered re the pred taper because it worked amazingly well at first (she was COMPLETELY normal...solid stool 1 x a day, no pain). Every time we weaned her symptoms came back and now (we have not tried to wean for months...she has been on a low dose since early fall) she is "stable" but not "well". Her symptoms are all over the place. 
Julie, if it is eczema I will cry. I suffered with it as a child and although I am sure the treatment has improved I was in SO much pain...my skin was raw. I had a bad flare in my late teen years followed by the onset of psoriasis. Crohns is enough for these kids...dam@ the extra intestinal manifestations!


----------



## imaboveitall

I was thinking of mild eczema, Violet has it and a little triamcinolone ointment clears it up. 
I know, the EIMs are ridiculous. V passed a kidney stone a few weeks ago, doc said it is an EIM.


----------



## izzi'smom

Fab news...Xaviers pediatrician was kind enough to pull an IBD panel with his 2 year old lead test (for chronic diarrhea) and it is completely normal...YAY!! I also love that our md appt was at 9 am, we stopped at the lab next, and by the time I got home after running 2 more errands the md office was calling with results <3 Wish the GI was as good as the Ped about results!! 
I start Humira Friday...same day as Izzi's 3rd dose.  We are pretty excited. I am a bit disheartened,  though...she has been in the bathroom a lot today (and she was at her grandparents all day, which usually discourages her from using the bathroom (y'know, safe toilet syndrome and all). Wishing for Humira to work its magic soon!


----------



## DustyKat

Thanks for the updates all round Angie!  

It IS fab news about Xavier!...anda:anda:anda: 

Awww I so hope the Humira starts working miracles for Izzi, bless her...:hug: Oh my goodness! Humira buddies! Sending you both loads and loads and loads of love and well wishes!...:goodluck:

Dusty. :heart:


----------



## Max's Mom

Hi! After failing Remicade (worked great for 1 year and 6 months)Max  started Humira yesterday.We were supposed to get 2 shots but they dropped one,so we have to give him one on Tuesday. They used the emla cream but it still hurt a lot and the loud" pop" scared both of us.He told me that he will never do this again and he is planning on running away on Monday(I hope he is joking with that one) He is already feeling better so I hope he will come to his senses. Does anybody have any advice on how to make it hurt less? He got the shot in his leg.My husband and I do not have any experience with giving shots,so this will be a tough one.


----------



## Dexky

We still only use ice packs on EJ's leg.  It does burn but it only lasts (according to him, anyway) about 10 seconds.  I guess we're lucky with him.  He just grits his teeth and bears it.  I know it can be hard to convince a kid but a few seconds of pain every two weeks versus constant pain seems like an easy sell.  

Wow Angie, the chips are really falling in place for you!  I hope the humira gets you both where you need to be.  It will probably be a huge comfort to Izzy knowing mom will be taking it right there with her


----------



## izzi'smom

Max'smom...we requested syringes. The only time she complained about pain was during the injection (the needle is so tiny you can hardly feel it.) If you use a ayringe, you can control the rate of the dose...injecting really slowly helps and there is no noise. We ice the area beforehand and I was told that all kids are different, but many prefer the leg. I was also advised to avoid the center of the target area. DD hates emla...makes her red. Hope that Monday's dose goes well...poor kiddo!


----------



## imaboveitall

Hey IzMom,
V did the first one in the leg and it hurt so badly she tried the next one in the abd, and said it hurt way less, also depressing the plunger VEERRY slowly helped a LOT, she said.
The nurse said almost all of the pts want the leg initially but then end up saying the abd hurts less...I'd think the opposite but just passing on what we've heard/done.

Looking forward to reading Izzi's lab results post-shot; V's were dramatically improved though her weakness remains. But we think that is from some concomitant thing anyway.


----------



## Max's Mom

I am so not looking forward to tomorrow.How long should it take before he starts to feel alot better? Last night he was up a few times with stomachcramps while going to the bathroom.Today he is super tired.This better work or we will all go nuts.I can just not take seeing him in pain anymore. Cecilia.


----------



## QueenGothel

Angie, Glad to hear your sons panel came back good.  I hope Izzi and Max are feeling better real soon. Do you know if severity of disease matters with how long it takes?  Or where it is located?  Do certain areas take longer to heal? How do they grade it?  With UC it is mild, moderate, severe.  Same guidelines I am guessing?  Regardless our kids need remission and a long one too. I hope it comes fast.

Hugs to both of you.


----------



## izzi'smom

I am not sure...maybe Dusty will chime in. 

Izz had a terrible day today. She was in the bathroom a few times and was laying on the floor in pain half of the day  I gave her tylenol and Motrin but it didn't seem to really help. She is cranky, which I am guessing is because of the pain, poor kiddo. ALl I can do for her is rub her back (I keep forgetting to try the heating pad on her belly). She had a handful of Cheerios for breakfast, ONE bite of lunch and half of a taco at dinner...just seeing her vitamins made her retch this am. I am going to try to get her Zantac tomorrow...she can't live this way. Hoping tomorrow is a better day for my sweetie!


----------



## Dexky

Sorry Ang!!


----------



## imaboveitall

Oh, I am sorry to hear this about that little Doll.
Nothing to offer but understanding galore. I've been there and I never want to go back again.


----------



## Tesscorm

Angie, I'm so sorry that Izzi's not responding more quickly!   I hope tomorrow brings you both a better day. :ghug: :heart:


----------



## Crohn's Mom

Great big hugs Angie ! So sorry you're going through this


----------



## DustyKat

Oh Angie...:hug:...I hope more than anything that Izzi finds lasting relief very, very soon, bless her. 

I wish the same for your boy Max's Mum! I hope all goes well with today's shot! Good luck! 



> Do you know if severity of disease matters with how long it takes? Or where it is located? Do certain areas take longer to heal? How do they grade it? With UC it is mild, moderate, severe. Same guidelines I am guessing?


Unfortunately I think there are too may variables for easy answers.  The fact that this disease is so highly individual is a real stumbling block to solid answers. In my own personal opinion I would have to say that surely severity does play a part, I well imagine that someone with severe disease would take a longer to feel the full effects than someone with milder disease but that would also be subjective to a degree. 

I don't know that location is a huge factor but rather what is present. Take Remicade and the terminal ileum for example: If there is a large amount of inflammation present Remicade can heal the area very quickly but in doing so it has the potential to cause scar tissue and this then leads to stricturing (narrowing). Then still with the TI and Remicade: If you have the complications of fistulae then studies suggest that Remicade is not very successful at healing fistulas that originate in this area of the bowel. On the other hand, fistulas originating in the perianal area respond very well to the biologics. Then having an abscess should cancel out the biologics altogether. 

CD is rated the same as UC...mild, moderate, severe. It is worth noting that the diagnosed level of disease doesn't necessarily match the risk of complications. My son's disease was rated as mild to very mild, so only present over a fairly conservative area of bowel and with not a great degree of activity. Unfortunately it only takes one deep ulcer to create a fistula and abscess. (((sigh)))

Dusty. xxx


----------



## Jenn

Max's Mom - We had the same issue with the epipens for Humira a few weeks ago, the loading dose - one in each leg. It was horrible and my son, age 10, hollered. The pop scared both of us too. We used an ice pack for the 2nd loading dose, also epipen, and he was better prepared (and bribed with a lego set!). Our GI's nurse did those. Last night I did the maintenance dose syringe and it went so much better. The numbing cream didn't really do anything, but the ice pack helps numb deeper. The medicine really burns when it goes in. Luckily, we saw quick results, so I pointed those out to encourage him that it was worth the pain. The pain lasts only for about 10 minutes at least, much less effort than Remicade, which we just switched off from. Hugs to you, it really is awful not being able to do more for our kids.

Izzi's mom - Still hoping you see some good results soon! Hang in there.


----------



## izzi'smom

So I got our script (I meant Zofran not Zantac lol...darn drug names!) and Periactin also, which he wants us to try first as he doesn't like giving Zofran. She started the Peri tonight but I couldn't get the Zofran til tomorrow. I will give Humira 12 weeks (we are on week 4) as after that if it hasn't helped it isn't likely to. She is also getting labs (lab was closed by the time we got there ) and a repeat colonoscopy in 8 weeks. She's still hurting...and told me to hurry up and put the candy away because she couldn't look at it today. Seeing food makes her nauseated. It cracks me up though...doc says how are you and she says good. He asks if it hurts and she says no, although she is sitting on my lap so I can rub her back because it hurts. Goofball!


----------



## imaboveitall

God love her :rosette1:
V takes Periactin (cyproheptadine) for dysautonomia, I know it has other uses.
Three mos, here too, if no improvement.

Is the EN an absolute no go for her? I know you tried it already, but maybe with a different formula? V had to have a peptide based formula to get results, Pediasure made her worse.


----------



## izzi'smom

Her EN was peptide based. The ng affected her quality of life two ways...insertion was painful (she literally cried for a week) and it only made her feel better if she ate nothing else, which is difficult for a 4 year old. Her GI recommended changing the tube monthly. It might again be an option when she is older but won't work for us right now.


----------



## Johnnysmom

Thanks for the update Angie.  I hope the new drugs do the trick for Izzi.  Did your DR. mention why he didn't like to do Zofran?  Johnny has it on hand and has had to take it but our Dr. said it was a very safe mild med.   Just wondering, I suppose the less meds the better no matter how safe.   Take care, I will keep praying for your precious Izzi.   (((((Hugs))))))). Tiffany


----------



## kimmidwife

Angie,
Sorry to hear it is not working. I know how rough it is. I am praying that Izzi finds something that works for her. Maybe she could try the LDN.


----------



## dannysmom

izzi'smom said:


> It cracks me up though...doc says how are you and she says good.


My son (14) does this too  (I saw it written on a GI's letter to our ped ... "When asked 'how are you?', his answer was 'fine' ") I had to tell him that the doctor is not making pleasant conversation and that is when he needs to say all that bothers him. 

I really hope the Humira kicks in for you soon.


----------



## imaboveitall

Poor dolly. If she cried for a week it must have hurt her the whole time...:yfrown:

No suggestions this post, just much love and understanding...I've been just where you are.


----------



## Max's Mom

Izzi's mom. I hope your beautiful girl will get better soon.It is so hard seeing your child ,that you would do anything for,in pain.Heating pads don't do much for Max. Long,hot baths makes him feel better.But when he is hurting ,even a multivitimin will hurt for him,too.This horrible disease is so unfair.Cecilia.


----------



## izzi'smom

Tiffany...I think his point is that he doesn't want kids to take it for chronic nausea...he's rather treat them with something else (she is on prevacid for vomiting, which worked well). My concern is that she had not eaten for 2 days (literally, she would take a bite and be done, or look at food and be in the bathroom). I know that if it continued much longer she would begin to lose weight and require hospitalization, which I am trying desperately to avoid. So I was fine with starting the Periactin but wanted Zofran in case it didn't work, or didn't work fast enough...once these kids start heading downhill it all happens fast, KWIM?

She finally ate a decent lunch today, but we still haven't managed to get any supplements in her. Maybe tomorrow...

Too funny, Jeanne. Even when the doc is direct ("Does it hurt?") she is reluctant to share. I told her she needs to open up, but when I was talking with her therapist this week, she told me Izz is *just* opening up to her (she LOVES her and has been going monthly for 6 mos). I guess doc R is going to have to wait for Izz's approval lol!)

Julie, it literally did hurt the whole week. The first 2 or 3 nights, she was crying in her sleep and the pain woke her up. I think the tubes for intermittent placement are far smaller, but the permanent ones are weighted and thicker at the end. They used the smallest size they could, although they didn't use the numbing spray. She was inconsolable. If I thought it was something she would "get used to" like a shot/iv it would be different. 
Cecelia...love the idea of a bath (you meant for me, right? ) I'll offer that next time.


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## Jenn

Alex is on periactin too, to help his appetite, and that does work for him. Also seems to help his nasal allergies, funny that my older son also took it as a migraine preventer.

Alex does the same thing, saying he's good to the doctor. It's an odd situation, cause it is a pleasantry too when they ask as they first walk in. I just always follow up with details....


----------



## Catherine

Sarah always tell doctors says she ok,  I also follow with the details.


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## Tesscorm

Angie,

Just sending wishes that Izzi begins to feel better! :kiss:


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## QueenGothel

Angie, I second the good wishes your way.


----------



## Max's Mom

Does anybody have any good ideas how to help get rid of the "stinging" after the Humirashot?Max tells me that hurts more than any stomacaches he's ever had (and he has had some bad ones)Cecilia.


----------



## kimmidwife

Cecilia,
THat is why my daughter couldn't tolerate the shots. She complained for a week after that her leg hurt. Did you try icing beforehand? Some people here also recommended Emla cream cream that numbs the area. It is a prescription so you would have to ask your doctor.


----------



## izzi'smom

Izz just got her third dose and I did my loading. Its easier to give thanto receive lol!she fussed a bit more with this one...I wonder if I could have iced her more (shewas interrupted by a bathroom bbreak). My leg is still a tiny bit sore 30 minutes ppost shot, and my belly feels fine now.it burns a bit going in...maybe like soap in a cut? It REALLYhelps to push itslowly- the pens must be so tough!


----------



## Brian'sMom

Angie, I wish so bad that I could feel what it feels like. Do you mean the pen must be tough because of the sting? Is Izzi patient with going slow? That's what Brian doesn't like...the process being slow. He wants it done and over with FAST! But I worry that it does hurt really bad. He's starting to have a mental thing with it...he told me yesterday that even the sound of taking the caps off start his anxious feelings. At our next appointment in April I'm planning to talk to our GI about the syringes...or if there anything better? Every other week is so often. I'm not sold on the whole LDN thing, but I plan to bring it up anyways. It being a medicine for drug addicts bothers me...and the hallucinations that come with it...bothers me. (But IT ALL bothers me!!)

Cecila,
Sorry I haven't returned your message. I haven't been on here for awhile. I hope Humira helps Max better than the remicade did for him. Also, we are one of the ones that use the EMLA cream. It helps numb the area along with the ice for Brian. He wouldn't do it without both of them now.


----------



## izzi'smom

Kathy...aren't the hallucinations only at the higher dose? It is a *tiny* percent of the dose (2 or 4 instead of 50 (?)) that they use for Crohns as opposed to addictions. 
The pen injection must be harder because you can't control the rate. With the syringe, I push until I feel it start to burn, pause, push, pause. It might have taken me about 30-40 seconds to inject the whole thing. As long as you hold the needle fairly still it doesn't hurt to prolong the injection. Izz is patient, but she is also great about holding still for bloodwork. She starts to whimper when I push a lot at a time (Its a 40 ml dose so I must only be pushing bout .5 at a time).


----------



## Brian'sMom

Angie, I think you're right about the hallucinations...I know nothing about it I admit. And if you google it, not the normal sites come up, so I'll just wait to ask my GI. Having said that, last nights injection went well. We took the caps off in another room. And we didn't do Brian's usual request of 1...2...3..."POP". We just set the pen, then hit the button. He was surprised...but happy! He said it didn't hurt. I just know the biggest part of it for him is mental. Also, He's been in remission since the beginning of Humira. He had fast results from it and has been feeling well ever since. I really think he just needs to get a solution to 'freaking himself out". He says it only burns for a few seconds. Afterwards he's jumping around and acting like normal. So he's lucky that way. (I guess he should be like this...he's 12). I am going to ask about the syringe, but since he's such a 'visual' person, that'd probably freak him to no ends!! Thanks Angie for your quick response  Good luck to you and Izzi.


----------



## Jenn

Not sure it'd work for everyone, but I warmed the area after the shot on Alex's thigh and the nurse told him to wiggle his toes. Probably to get the medication spread out more, so it would hurt less? Icing for about 20 min. beforehand helped the initial injection. And yes, from what I experienced with watching my son and what I've read on the board, the syringe is a slower and less painful than the epipen. plus, I think it warmed up more for the injection.


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## imaboveitall

V says the abd hurts far less than the thigh, she had the first one in the thigh and won't do it there again!
I know the abd is a creepy place (to me anyway) to be sticking a needle but she says it is much easier.


----------



## izzi'smom

^It's not easier to do it on your own abdomen lol...took me a whole minute of psyching myself out lol! I could still feel where I gave myself the shot in my leg a few hours later, but the belly site was completely fine. 
Another note...how you are supposed to hold gauze on it for 10 sec...do it gently-it is tender!
Jenn, I don't think I iced either one of us that long...maybe I should give Izz a little longer to ice. It freaks her out mentally, though, as it means the shot is "near"


----------



## imaboveitall

Yeah, I think the abd would be MORE sensitive but V's nurse said most agree w/V that it hurts less...:voodoo:

Any changes in little dolly's symptoms?
Shot no. three done here on Fri, no change, but we are moving ever closer to confirming that V ha some concomitant issue (Guru appt Wed) so that may be why. Her labs certainly are way improved so she OUGHT to feel a lot better, but she doesn't.


----------



## izzi'smom

Ack..no. she's actually worse. She is in the restroom more often, which I could attribute to her recent pred weaning butshe also is in more pain than ever and has some significant fatigue, which she hasn't had for a while. Her lab results are in but i missed the phone call fri so I will get them tomorrow and I am looking forward to her colonoscopy in 7 weeks...wondering how she is looking after a year. Good luck wed...hope u get some answers!!!


----------



## imaboveitall

Crap, I was hoping you'd say she is responding great...

I'll be watching for posts about her labs, and what her doc says about response time. V's said it can take 3-4 mos, which is why I agreed to 3mo trial. But with V's lactoferrin going from 3600 to 105 after the loading doses and NO change in her invalid status, something else must be in play.
If Izzi's labs are also much improved but clinically she is worse that'll be interesting to me...:confused2:


----------



## Tesscorm

Just curious re the Humira shots...  do you give/take them before bed?  Just wondering as I've read that the pain from the shots persists for a while after the shot, couldn't you alleviate some of that pain if you had the shot before bed?  Wouldn't it be gone by morning?  Maybe a dumb question :redface:


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## izzi'smom

Izz doesn't complain about it, although I just asked and she said it hurts "like, half of the day"  She makes herself puke with anticipation so the end of the day isn't a good time for her, plus her dad would have to give it. 

Her labs came back...CRP was 4.7 and is now 93.7 ((
waiting for doc to call me back to discuss what is next.


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## Tesscorm

Oh, Ang... sorry about the results!  I hope the GI has some suggestions...


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## Max's Mom

We put emla cream on first, for 30 min.,then we ice for 10. The problem is not that the shot hurts,it's the feeling after. This time I will have a bath ready for him to get into right after(plus ice cream cake) hopefully it won't make the med.ooze out somehow.                    Kathy-I started worrying that something was going on with you guys,glad things are good.              Angie-sorry to hear things still are not better. Thinking about you all. Cecilia.


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## QueenGothel

Sorry Angie.  I hope the doctor has a plan B set up already.


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## izzi'smom

Colonoscopy coming soon! He is unsure why her numbers are so high.


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## Jenn

Sorry to hear that Izzi'smom, opposite of what it should've done, rats!


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## Crohn's Mom

Awe man Angie 
So sorry ~ I hope they figure out why it's rising soon and get her sorted !
:hug:


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## izzi'smom

Just here to vent today...they are trying to get her in for a scope on 3/30. 
I am frustrated because the nurse tells me her Doc says she doesn't need an endoscopy. She is nauseated and has a poor appetite despite being on Prevacid and another drug for nausea and as needed zofran. THese symptoms are new since her last endo 13 months ago...I guess I need to talk to him to find out why he doesn't want to make sure there is no new disease in her upper GI tract. ARGH!!


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## imaboveitall

V's doc always does top and bottom, I'll be interested in why Izzi's doesn't feel the need in her case.
V had severe gastric dysmotility as a presenting symptom, almost a gastroparesis, she was nauseated with any and all food and Pediasure, despite no evidence of disease anywhere but the TI, other than a small duodenal "erosion". Izzi may have some delayed gastric emptying like V had, even with disease lower down.


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## Manatey

First of all I just want to say I have all the respect in the world for you moms that have to watch you kids suffer like this! I always feel awful inside when I read your post and think about little ones having to deal with what I deal with on a daily basis!  Anyway, If she is having new symptoms I think it would be stupid not to do both if you have to put her through the prep anyway! I am glad you are fighting for it for her! Good luck! :heart:


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## izzi'smom

Thanks, Manatey!
I don't see the need for both every time, and it's not as if I am asking him to do an endo out of the blue...while she is under, lets do both. If she ONLY had diarrhea and pain, I'd be fine. Grumble, grumble. :voodoo::voodoo: You'd think that if I requested both and he declined, he would at least explain to the nurse WHY so she can let me know...


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## DustyKat

I don't see why he doesn't do both either, particularly when she is symptomatic. Grrrrrrr

Seems such a waste when she has already prepped and is having the procedure under anaesthetic. 

Good luck Ang, I hope you can talk him around! 

Dusty. xxx


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## Brian'sMom

Angie, I think if she's having an upset stomach and poor appetite it'd be a good reason to take a look. Stay on it...I'll bet he'll hear your concerns and do both. What is his reason for not? Possibly the nurse got it wrong.(you and I both have had some nurse issues!) Hopefully you'll get this resolved soon so you can take it off your worry list.


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## Jenn

I hope she's feeling better now. Alex had stomach pain, nausea, vomiting, and low appetite around the first of the year. We ran tests and found out Remicade was failing him. But, I also think he had a virus and it took him a couple weeks instead of a couple of days to get over it. He started feeling better with the stomach issues before we started Humira, anyway.


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## ehs8998

Angie, I am so sorry you And Izzy are dealing with this. I hate that our children have to suffer like this with no end in site. I do understand a bit about parents.... lord love them, and yes they are only trying to help. Sometimes though, just putting one foot in front of the other is all you need to manage, and it would be nice if they would Listen instead of telling.
I hope tomorrow will bring Izzy some relief, and you some peace of mind. You will be in my prayers...
Elisabeth


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## polly13

Hope Izzi starts to feel better soon.  thinking about you.


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## izzi'smom

SO...our OLD nurse called yesterday with med witholding instructions for her colonoscopy...and tells me he has agreed to do an endoscopy also. WTH??! When I asked (ever so politely ) if our regular nurse was aware because she was asking doc to call me to explain why she *wasn't* getting an endo, old nurse said "Well, I reminded him of her persistent n/v and he said Oh, yeah, OK, endo- too". GAH!! At any rate, I am glad he agreed, as I would have had to beat him over the head if he didn't. 
Izz is hurting. She slept fourteen hours the other day, and is up 4-6 x a night for bathroom visits.  She came home early yesterday for a headache and complains of pain (that brings her to the floor) regularly. On a good note, she has eaten well the last two days, so although she has lost weight (4-5#) I am hoping this is on the upswing now.  
SHe told me yesterday she wishes she could kill her Crohn's LOL! 

She also has been talking negatively about her self image (especially due to the Pred; swelling, bloatedness). A good friend of hers is TINY and Izz seems especially sensitive to it; anyone discuss this problem with their little ones? I intend to bring it up with her therapist but need to do some work at home to combat this...she is too friggin young to have a poor self image  The only time I  have said anything is when discussing the fit of her clothing or I laughingly have called her cheeks Pred cheecks while kissing them...guess I have to watch what I say.


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## imaboveitall

Nothing to offer beyond love and understanding :heart:...Violet's no better after three doses either. 
That Izzi is stunning, such a beauty, self image issues from the blasted pred...wow. Sweet dolly...:heart:


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## Tesscorm

Ang, I'm so sorry that Izzi isn't feeling better!  Poor kid!  I hope the scopes can provide some answers, she (and you!) so deserve to get on a quicker road to recovery!

And, those TINY little girls can sure cause heartache!  :lol:  My daughter was always one of the taller, bigger girls in class and also had a tiny little friend who was a dancer.   No great suggestions here, sorry...   I always just reminded her of how her size was to her benefit in playing games in gym class, that everyone is built differently, etc.  Same things as I'm sure you're doing and saying :ghug:

Best wishes for the scopes and some answers!


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## DustyKat

Oh Angie...:hug::hug::hug:...how heartbreaking. I well remember the overwhelming fatigue and pain that both Sarah and Matt suffered, it's awful to see and doubly so in one so young. My heart goes out you hun. :heart: 

I'm glad that they are now going to double scope. I well see your frustration with the process and I so hope it will give you solid answers and lasting relief for Izzi, bless her. :hug: Her resilience and ability to cope never cease to amaze me Ang. :heart:

Much love and healing wishes, 
Dusty. xxxxxxx


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## Dexky

Sorry Ang!!  She's a beautiful little sweetheart who will grow up with so much compassion!  I know that soon you're going to be telling us how wonderfully well she's doing!!


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## Brian'sMom

Angie, tell her that the 'tiny' ones are getting teased too. My son, was 61# for like a few days...(still small for a 12 yr old)...and now we're back to 58#.  His friends have told him..."No one's smaller than Brian...well except for some of the girls!". I combat this by telling my son that EVERYONE is getting teased about something. When my daughter was in jr high it was her nose! My 17yr old is tall and has long neck, he's been called, "Skinny Minny", and "Splint". No one is perfect...so everyone is getting something said about them. Sad...but true. My son's have handled it better than my daughter. She's beautiful...but at 21yrs old...still talks now and again about wanting a nose job!!

Hang in there Angie. Hang in there Izzi.


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## QueenGothel

I hope izzis feeling better real soon.  Does she have weak muscles from the pred?  Rowan has trouble with her knees.  IBD sucks. Angie your doing a great job with her care.  Just rest assure your doing everything you can.


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## LittlebitsMommy

I hope Izzis feeling better. I know it is hard on you to momma. Hugs to you both. I also know how the steriods suck. Ko is so worried about his weight and his chubby cheeks. I think he is totally perfect but he doesnt think so. I am glad they are doing both scopes at the sametime. This last time they did Kotas at different times 2 weeks apart ugh. WTH why couldnt they do them at the same time.

You both will be in my thoughts and prayers


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## ehs8998

Oddly, Caroline is quite chubby. Especially since she had the colectomy... she has had self image issues since her stomach looks like pooh bear (her words not mine).. so all I can tell her is "God made yoy just the way he wants you to be," and tell her everyone has something that makes them different.
Take care....


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## izzi'smom

Thanks to all for the kids words...
She *will* be fine...I just hate that I can't find the perfect words to say to reassure her. 
Now she has a cough and I am worried that it will hold us up...I am supposed to take her to the ped early next week so they can let us know if she is cleared or not. Hoping it miraculously dissapears this weekend!

On a side note, she has been having accidents at school more and more frequently as her disease is worsening. The problem is, she has NEVER gone in the classroom bathroom and doesn't ask to go use the nurses. Once there (after having an accident) she uses the nurses restroom with no problem. WHen questioned, she has told me that 1) the other kids may come in (she likes her privacy and the door does not lock) and 2) she doesn't know how to flush. THis has been going on for months and I even went in the restroom with her the last time I visited her class last month. I am at my wits end...any suggestions?? I can get that she doesn't like her bath...but she doesn't even ask to go to the nurses office to go.


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## DustyKat

Fingers crossed Angie that the cough does indeed disappear over the weekend! 

When it comes to the using the nurses restroom is it the asking that is the problem? Is she embarrassed to ask? 

Dusty. xxx


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## ehs8998

izzi'smom said:


> Thanks to all for the kids words...
> She *will* be fine...I just hate that I can't find the perfect words to say to reassure her.
> Now she has a cough and I am worried that it will hold us up...I am supposed to take her to the ped early next week so they can let us know if she is cleared or not. Hoping it miraculously dissapears this weekend!
> 
> On a side note, she has been having accidents at school more and more frequently as her disease is worsening. The problem is, she has NEVER gone in the classroom bathroom and doesn't ask to go use the nurses. Once there (after having an accident) she uses the nurses restroom with no problem. WHen questioned, she has told me that 1) the other kids may come in (she likes her privacy and the door does not lock) and 2) she doesn't know how to flush. THis has been going on for months and I even went in the restroom with her the last time I visited her class last month. I am at my wits end...any suggestions?? I can get that she doesn't like her bath...but she doesn't even ask to go to the nurses office to go.


Caroline doesn't have to "ask" to go to the bathroom. If she is comfortable with the nurses bathroom, then perhaps have her leave the "supplies" there.. We have a conversation at the very first week of school, and explain what is going on. She takes flushable wipes, and extra underwear as well to school in a small bag, (one of the free makeup bags the "gifts" come from with Clinique, Estee lauder)..She then just throws the dirty undies away, and goes back to class. Perhaps sending in a weeks worth of clean undies and flushable wipes and set up an arrangement with the nurse???  In Florida we have the 504 plan, that is for kids with health issues and it covers all these sorts of things... not sure what you all have there..


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## izzi'smom

Dusty, I have no idea!! She is unable to go to the nurses office unattended...she is too yyoung. We have spare clothing and panties there...not an issue...I just can't figure out why she is refusing to use the restroom at all until after she has gone in her pants (she rarely has accidents at home).


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## Brian'sMom

Angie,
Brian had that exact problem in kindergarten. The bathroom was in the classroom. He was worried someone would 'hear' his gassy noises. Also, as we all know, when crohn's is flaring, it smells different- and that worried him a lot too. I was lucky back then and didn't have to work so I would go up during the day and take him to the bathroom myself. His teacher was an old lady who would get so frustrated with me. "He's a big boy and shouldn't need his mom for this." OH POO ON HER!! I would go up at lunch or library or computer time when she wasn't around to see us. (I'll have to admit tho...it was a pain in the neck doing that once or twice a day!!!)


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## QueenGothel

Did they tell you she was too young?  If so that is crap.  I think she can find it if you walked her there a few times.  I would talk to the principal and bring my I can't wait card.  I just got one from ccfa and I have used it a few times.  I know they have literature about this.  I can't find mine but I know I had stuff from the doctors office about it.


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## AZMOM

Anyone in the US can have a 504....I'm a BIG proponent of getting a plan in place for our kids so that everyone is on the same page.  I would get started on one right away.  Every district has a 504 coordinator, that's where you start to get what you need to take to the doc.  

Love her little heart.........

J.


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## Brian'sMom

I agree about the 504. We put one in place. I also email his teachers (he's in middle school now) at the beginning of the year. There is always one or two that don't really know what crohn's is...and will not allow a bathroom visit, or give tardy if he's in bathroom between classes because he ate the meatball sub at lunch! I get that resolved right away. And like Mary said, An 'I can't wait' card they can leave on their desk. Our kids are good kids that don't look for excuse to roam the halls. When they ask to go...they mean NOW! Brian's teachers know if he has immergency he can just leave and explain later. But, Angie, its hard when they are so young. I dealt with that. They want to follow the rules and don't want to stand out. Its scary at Izzi's young age. What about if the nurse called her down at certain times in the day? During his 1st flare (And he was 5 1/2) Brian always had trouble after lunch (understandable) and during computer (don't know why that one). They can't hold loose stools. If he relieved himself at those times he was ok with no accidents.


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## DustyKat

Oh Angie...bless her. :hug:

I am leaning toward her perhaps being afraid/embarrassed to ask??? 

At home she has free use of the toilet so I can see that she wouldn't have accidents unless really caught out. Is there any possibility that she would be allowed to leave the classroom without having to ask so she isn't drawing attention to herself? Maybe she could put a little token or something on the teachers desk as a sign of what why and what she is doing? 

What sort of personality does Izzi have? 

Dusty. xxx


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## izzi'smom

Ack..she does have a 504 in place but prek kids. Need accompanied in. Our school. She is shy, although she loves her teachers and the nurse (you are prob right about the noise). It is never predictable...the nurse calls at anny time while she is there. I would love to get this addressed before kindergarten. I don't feel that it fair to request special (ie alternate-the nurses office) bathroom priveleges for her...thoughts? Esp since it equires someone to walk her there
Sorry for all of the typos...on my phone


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## DustyKat

I don't think it's unfair to request it Angie. 

I see it as Izzi having something in place to assist her with her chronic medical condition, she may not always utilise it but it is there if she does need it. I would be more worried about the accidents she is having Ang and what effect that is having on her. 

I hope I have understood your question correctly and I am certainly not implying that you are doing anything wrong Angie. I hope it doesn't come across like that! :hug:

Dusty. xxx


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## izzi'smom

True. I just messaged her teacher and the nurse to see if it is permissible for her to visit the nurse daily just to try. It may be that if she gets in the restroom and is able to go.  No offense taken, Dusty. Agreed that it bothers her...she never wants to go back to the classroom after...I think she is embarrassed.


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## Tesscorm

Angie, do they have a set 'break' or recess time?  Could some sort of routine be established where the teacher walks her to the nurses office just before recess?  By making it a daily routine, the onus wouldn't be on Izzi to ask...  Wouldn't necessarily help if Izzi has to 'go' at another time but might preempt the necessity to 'go'.


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## Brian'sMom

Angie, That's why the nurse is there...for kids with special medical needs. Don't feel at all like its unfair for Izzi. When Izzi gets older, she'll be able to handle it all without the nurse...right now because she is so young is when the nurse is needed. When Brian was little he didn't get it that when the 'urge' was there...it was too late (when his stools were so loose) then the accident. And when they're flaring...at least in our case, if he sat on a stool after it'd been a few hours...something would come out. Then its not building up.


----------



## Shansmom

Hey Izzi'smom -- so sorry I haven't been checking the forum in a while.  I am so sorry to hear about what you guys are going through. Just wanted you to know I am thinking of you guys.


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## izzi'smom

Tess, she only goes in for a half day (leaves here at 12:15 and gets home by 3:15). Her teacher is going to ask her regularly if she'd like to go. I *was* wondering if they could take her down at a set time, though. Thursday is career day and I am planning on visiting her class. I will attempt to catch the aide then. 

The first day of it (yesterday) didn't work well. She had an accident in the first 30 minutes. Better luck today


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## Tesscorm

Could it be that she is trying to hold it for too long?  I'm remembering that both my kids, when much younger, would sometimes have little accidents because they would be enjoying what they were doing, wouldn't want to stop so would hold and hold and hold!   But, in Izzi's case, by holding it for just a little while, maybe the urgency just builds very quickly.  (Because, I _think _you said it doesn't happen often at home???)  Maybe she hasn't realized that the accidents are happening because she's not going as soon as she feels the need???

As far as the classroom bathroom, I can certainly understand her hesitation if the door doesn't look.   But, if she's worried about sound - is there is sink inside?  Can you suggest she run the water if she's worried of noise?  (Without overflowing the sink!  Just imagining a five year old being told to loudly spray water!  What fun!!!)


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## DustyKat

Good luck today Angie. I hope you are able to speak with the aide. 

Dusty. xxx


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## izzi'smom

Tess, very true. She isn't doing it because she is busy, though (she never has) but because she is shy. The water is a good idea, plus I'd like to suggest an occupied sign (we had one when I was in school decades (lol) ago! Thanks for the well wishes, Dusty! We are doing clear liquids and prepping today also for tomorrow...the easiest ever because she is rarely hungry lol!


----------



## DustyKat

Yikes! Good luck with the prep...awwww bless her...:hug: 

Dusty. xxx


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## izzi'smom

ACK I spoke too soon. Last year she drank down the prep like it was kool aid...today she is sobbing and she was supposed to drink it 4 hours ago...I am nervous she won't get cleaned out in time


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## ChampsMom

I'm so behind - so sorry she's going through this!!  It's just a thought - but does she want to go to school?  If it stresses her to go, then this could be a contributor to her messes at school. I'm a home-schooling proponent and also, your county probably has a program where they can come in and teach her (verse you paying out of pocket for a program).  Our County's program is called Home and Hospital and is run through the school district.  

Does she need to go to school at this point?  

Also, because she already has a 504 plan, can they add having an aid specifically assigned to her class this year as part of her accommodation?  


Just a few thoughts... praying for you both!


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## DustyKat

Oh man Angie...:hug:...sending you both loads of love and wishes that all will be well. 

Dusty. x:heart:x:heart:x


----------



## izzi'smom

Good thought, Shell...but she *loves* school! I did consider keeping her home, but while she is at the head of her class as far as skills (cutting, coloring, writing, recognition and rhyming), she really needs the socialization-she is super shy. I *do* wonder about an aide, though. I'll have to think about it. 

Her scope is done. She was unable to control herself all night and went in her bed a few times, but thankfully her doc said she was mainly cleaned out. Her stomach shows mild inflammation, which may be a side effect of all of the meds she has been on. Her small intestine is pristine (WOO HOO!!!), but her large intestine is still severe, worse than it was a year ago. I can't help but feel bad that the last 13 months of treatment was all for nothing...I have been torturing this poor girl with all of these meds for nothing. She has a bunch of polyps that he would have removed had her colon looked better.  

Doc wants to test for the hap 1 strain of c diff...he said the appearance is pseudomembranous just like c diff and he wants to be sure she doesn't have a flagyl resistant strain. (When she was treated a year ago for c diff I asked for Vanco and was denied). Otherwise, I think he is preparing us for a  colectomy. He still likes to call her UC, not CD, and I think  because the rest of her is so clean he is leaning towards her ONE granuloma being caused by something other than CD. THis makes me hopeful as far as a colectomy goes, at least. I am just worried that if she has CD and has a colectomy, her disease will return elsewhere and we'll be back at square one. 
Her post op nurse was a jerk...I can't believe he works with kids. She was sobbing because he put her on a bedpan (she doesn't understand the concept that it is "OK" to go in bed, besides the fact that she was surrounded by people and expected to let her bowels go. THen he told her to stop crying that he wasn't hurting her. He started to remove her IV when she was already unconsolable...when I asked him to wait he said he would just unhook it (at the IV site). I again requested that he wait until I got her calmed down and he proceded to do it anyway. I finally told him to leave her alone when he asked if she wanted to go to the bathroom instead of sitting on the bedpan (of course, as she had been asking for 30 minutes), and he waited until she said yes (he wouldn't accept a nod for an answer) and said "Thanks for using your words" in a condescending tone. JERK!

Thanks for reading my novel! I can't wait to go next Thursday to discuss biopsy results and determine our plan of action...I didn't have my pen/paper out today and I am LOST!!


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## Tesscorm

Angie,

OMG, I think you should write to the hospital, to the head of every department that is connected to that nurse and complain.  What an A$$!  How cruel!!  I am so mad at this guy, _I want_ to write the letter! :lol:

Tough decision to make re the colectomy.   I hope you have more certainty re UC or CD before you have to decide on surgery. :ghug:

Re your other post, I hope the new prescription helps relieve Izzi of some of her pain! :Karl:


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## Johnnysmom

I know you probably don't have time to write a letter about that nurse but I agree with Dusty that guy is an ass and his treatment of poor Izzy is cruel.  So sorry you had to deal with that.  I hope a different antibiotic for C diff shows some improvement.   Is it possible once a possible infection is cleared that meds that didn't work before would have success?


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## QueenGothel

If I don't like a nurse I immediately request a different one.  Just FYI it is totally your right, most children's hospitals do not take offense.  I would just say she doesn't like male nurses.  I am so sorry about the colectomy.  I do completely understand why your concerned about the UC and Crohns factors. 

A couple of websites I found useful

http://surgery.med.umich.edu/pediatric/clinical/physician_content/n-z/ulcerative_colitis.shtml

http://www.jpouch.org/

YouTube videos by let's talk IBD.  Ostomy support friend Maggie Baldwin does a lot of videos about tips and tricks for bags


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## Jenn

Poor Izzi! Good to have some answers. It was worth trying the meds, one of them might've worked and maybe you can rest better knowing you exhausted all options? So sorry to hear about the nurse, some people some days! Hope you get her feeling better SOON.


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## Brian'sMom

Angie, I am appalled by that nurse. That is so horrible to treat someone that way...and a little girl at that. So sad that these kinds of people aren't weeded out...DMV is he should work!
I hope Izzi gets some answers soon and to feeling better. 
HUGS!!


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## ChampsMom

I'm absolutely appalled that someone working with a child would be so incredibly insenstiive...  So sorry you all had to go through that...  

I pray something works out soon...


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## DustyKat

Oh no, poor Izzi and poor you for having to put up with an imbecile like that, how awful for you both...:hug: 

It's good to hear that disease remains confined to the large but I am so sorry to hear that it is still severe.  

The doc sounds well on top things and I so hope you have a solid direction soon Angie and Izzi is able to find lasting relief, bless her. 

As to the last 13 months, well hindsight can be a real bitch hun. We do what we do based on what we think is right and going with meds was the right thing to do. I really do think if you didn't choose this path first Angie you would be plagued with what ifs. If it does come down to Izzi needing a colectomy at least you know you have exhausted all other avenues. 

Kudos to you Mum for doing such a fab job with your little girl. :heart: 

Dusty. xxx


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## imaboveitall

Oh my GOD...no way.
I would've been beside myself.
What in the HEELL...I'd draft a complaint for sure. Poor little dolly...:heart:


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## Crohn's Mom

Oh Angie 
I'm a bit behind lately but I just want to say how sorry I am to hear all of this!

I know the feeling all to well of looking back and thinking that the last year of medication was a waste ~ that's exactly what happened with Gabrielle   But hey, we can't live in the past right, and we did what we honestly thought was best for them! And, look how well Gab is doing now!   I just know with you by her side that Izzy will be just fine very soon! 

Hang in there hun, you're doing an amazing job and she's lucky to have you as her mommy!
:heart::heart::heart:


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## izzi'smom

We need to make an appointment with a surgeon. 

He is putting her on Vancocin anyway, just in case she has an infection on top of her disease, but told us we need to go ahead with the surgery. 

I am surprised that she has no deep disease: fissures, fistulas, but she is so severe that she needs a colectomy. 

While she hasn't been on EVERY drug, she has been on every CLASS of drug and hasn't shown significant, reliable improvement. 

@T- Gab is my hero...I have been thinking of her and desperately hoping that Izz can do as well as her. It still worries me. I have seen and briefly cared for an ileostomy but am more worried about Izz's reaction. I have so many questions but I think I need to grieve for a bit first.


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## imaboveitall

Angie, wow. Just wow. A heavy thing. :frown:
But, I wish V could have surgery. If it were up to me only, and not the docs, she would. Like little dollface there, she has disease only in one (albeit different spot than Izzi) small area of bowel, all else is always clean. Dusty's kids' stories make me wish V could have that scenario of a normal life post-sx.

Scary for sure but what a relief. Poor darling...but after it's all over, a better life I'm sure. :rosette2:


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## QueenGothel

Hey Ang,

As you know we are preparing for a colectomy on April 17th.  Since Rowan is coming off Remicade and was doing so poorly, I talked with a naturalist nutritionalist here whom specializes in IBD.  He suggested doing some allergy tests.  I couldn't do them bc Rowan was too anemic.  He spoke of doing gluten free or scd. I decided to try gluten free bc it was easier to implement. It has did wonders for her.  She has pretty much stopped bleeding completely now and is feeling great.  Just thought you might benefit from it too.  Maybe? I really have to increase the miralax though bc it is such a binding diet.  I mean she is a completely different kid in one week.  Started seeing an improvement in 3 days.  Idk if it was the diet or just a lucky moment in time of remission.  But hey you have been following her story too so you know how bad she was doing.  She hasnt really had any remissions since her first flare. I am going to start moving towards scd now.  Figure it was worth mentioning.  

My best to you and izzi.


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## Tesscorm

Angie,

I'm so sorry Izzi is facing surgery, I can imagine it's breaking your heart. :Karl:  But, this may be just what she needs to move ahead and live an active, pain-free life!  Don't spend a moment regretting the treatments you have tried!  How could you ever have accepted surgery without trying all the medications?  You made the right decisions in attempting the treatments, just as the decision for surgery to take her to remission will be the right one to make now.

Angie and Mary, it may be difficult for them at the beginning but they will adjust.  I know I once wrote that I was in hospitals for weeks, months when I was 5-7 years old and couldn't walk at all.  Tons of treatments, leg casts for weeks, I must have missed at least a year of school, etc. (no surgery but, pretty much all else - even a bone biopsy done with only local, while I was awake   The anethesia didn't take!  ), and truly I do not have memories of an unhappy childhood.  It was what it was...  it's obviously the good memories  that stick!   And my mom is a big part of those memories - she was always there and, even at that age, I think I knew that she was always looking after my best interests - medically, emotionally, etc.!

So, just hang in there, you guys are amazing moms!  :ghug:


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## Shansmom

Angie -- I know I am new to the forum but I feel like I am getting to know so many stories and none touch me more than yours and little Izzy's.  My hear goes out to you both.  I concur with Tess.  I read what you said earlier about wasting time on meds.  But you definately did the right thing trying all of the classes of medicine first.  Our children are so strong -- stronger than we are often.  I can't help but believe that our children will be stronger and more compassionate and will go on to do amazing things in their lives because they have learned to deal with so much at a young age.  Again, my heart goes out to you guys.  Big hugs.


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## DustyKat

Thinking about you Guys Angie...:hug: 

Much love, :heart:
Dusty. xxxxxxxx


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## izzi'smom

Thanks all...
Having trouble finding a great hospital covered by our insurance...can't figure out what to do about it. 
I am adamant about getting her into one of the best...if she has to have this done I want it done by people that do it daily. 
I can't figure out what to do, other than calling the insurance company and begging or seeing if there is a loophole where I can switch policies (we have an HMO...the docs would be covered if I switched to PPO).
@Mary-she feels OK other than the pain, which is occasional. She is nauseated, though, and I am afraid if I further restrict her diet she'll just not eat (we are struggling with weight loss). I was going to do gf a few months back...it is super overwhelming but I have heard people feel much better after making the switch.
@Tess, Shansmom,  and Dusty-thanks <3


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## DustyKat

I wish I was able to help you navigate the insurance system Angie. :hug:

I totally understand your need to find the best, as no doubt we all do. Good luck hun, I hope something is able to be sorted for you. 

Thinking of you, :heart:
Dusty. xxxxxxxx


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## Sascot

Sorry to hear about the surgery although I'm sure it will be worth it in the end!  Good luck I wish your little one all the best and warm thoughts to you having to help her through it.


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## QueenGothel

Do you have Izzi on any kind of state aid?  Idk how your state works that out.  Here in Michigan we have children's special health care. This is what Rowan has as a secondary insurance. Just was curious. Bc it covers everything IBD related that my blue cross doesn't cover. (and thank goodness for it bc her last stay was $44,000 and that was just U of M for 9 days didn't even get the one before the transfer for 22 days at the other hospital) But we do have a PPO and the hospital must be in the list. Not that you would want to travel out of state any further than you have to. 

But...http://health.usnews.com/best-hospi...spital_name=Hospital+name&service_offered=All

What about Saint Judes?  I see commercials all they time.  No family refused, no bills associated with it. Idk their experience in gastroenterology surgery though.

Can you use referrals to get her through a loop hole in your HMO?


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## izzi'smom

We make too much to qualify for any aid in NY state. 
(I was JUST complaining about this...I can't write off her medical expenses (we didn't "plan" for her to get crohn's and didn't take enough out in our flexible spending account) but I can write off the cost of my uniforms for work...stupid IRS *grumble* lol!)

I called the insurance company today...I asked about it and I was told that BECAUSE there aren't any hospitals on the list that are acceptable (according to her doc) he can file for an exception...so maybe we *can* go back to Boston *YAY*! I was terrified I'd have to keep her well enough until I could switch policies at the end of the year (or have a shotgun wedding with some bloke from the bar )


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## DustyKat

Good luck Angie! I hope the insurance comes to the party...:goodluck: 

Fingers, toes and everything else crossed! 

Dusty. xxx


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## QueenGothel

Wow our state aid doesn't have a top out.  I would ask someone.  We just pay more for it if you make more.  Gives a breakdown up to $136,000 a year with no ceiling.  Yes, if we made that much or more we would have to pay almost $3000 a year for it, but still would be worth it for us bc it covers everything our primary doesn't cover and then the is deductibles and stuff too it covers. We would never qualify for normal aid in a million years, but bc Rowan has UC we qualify. I would talk to a social worker at the hospital and double check.  The hospital did not offer it to us until Rowan was hospitalized for 10 days. but if your going to do the colectomy it is a guaranteed 8 days for the first surgery and another 3 for the reconnect.  We got a bill from the 10 day stay from the last hospitalization and it was $44,000, with no surgery.

My husband makes $68,000 a year (and our economy is in the crapper.... More than ANYONE) and we pay $372 a year for it. Not trying to be pushy I just wanted to make sure you looked into it bc I know under normal circumstances she would NEVER qualify for anything.  Not that we needed it until now.


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## QueenGothel

I found it... Your cap is for a family of 3 $73,240.  That is crap. Sorry.  That sucks.  I can't believe it. BUT You wouldn't take both you and your exs into consideration. Since your divorced. That is a modest salary in Michigan but I know everything costs more in NY. I am shocked... Completely.:thumbdown:


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## izzi'smom

Thanks for checking for me (and not pushy at all)  I looked into it last year when the bills started coming... we are legally married (I wasn't working ft until recently and he has better insurance coverage) his ft slaary and my per diem work were over that cap anyway. Its ok...we could be far worse off...at least we both have good jobs and health insurance (despite our hmo not covering thehospitals I want to it is relatively inexpensive and covers most of our needs otherwise). I am slightly concerned about the time off for her surgery...I work 7 on 7 off but will probably need at least 3 weeks off (if not more) and I don't get paid time off. I will probably try to make sure the bills are paid and put some money aside to get usthrough..her dads salary used to supportus both so we should be ok


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## izzi'smom

My boyfriend (our Boston doc) is no longer with the group 
Just bear with me as I mourn...:yfrown:
He *is* supposed to call me to discuss her case though...at least I get to talk to him :wub:


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## DustyKat

Awwww Angie...:hug::hug::hug: 

I hope another Dr Wonderful comes along!... 

Dusty. xxx


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## izzi'smom

Found a list of top rated surgeons in Boston to send to my doc...we can try, right?!  Also looking in to the Yawkey Inn for lodging. I can't imagine how much a hotel will cost if we can't get approved...and I am going to be off work for at least a few weeks (I work a special shift so don't earn paid time off). 

Izz is worse since starting the Vancomycin...and I don't think the levsin has had time to work yet. Her doc sounds pretty bummed about it...I think he was convinced she had an infection on top of the disease. I forgot to ask about her stool culture...darn!


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## Crohn's Mom

Ughh ~ I hate to hear that yet another med isn't helping Izz 

I hope she/you gets the best of the best in the surgery department ! She deserves nothing less ! 
Big Hugs and hang in there !
Btw ~ I truly admire your positiveness throughout all of this ! You're pretty amazing !


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## crohnsinct

Ditto to what Crohn's Mom says.  

Have you considered Yale or Ct Children's Hospital?  Although I can't testify to their boyfriend worthiness...If you can get in to Yale, I live half hour away and have an unoccupied fully furnished apartment attached to my house you could stay in...just a thought.


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## izzi'smom

Omg you are too sweet! Boston childrens and chop are two of the top rated childrens hospitals-because we have already been to boston for a second opinion it is high on my list.
I don't mean to sound like I am complaining...her dad and I, although not togehter, both have good jobs. Just a hotel room for a week at a reduced hospital rate is close to 1500, though. Our jobs aren't *that* good lol! 
Her doc is pushing to get her into a great surgeon. I guess they do the surgery locally but he wouldn't keep us here. Love him!


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## crohnsinct

Makes sense.  Everyone here runs to Boston also.  I am hoping we never have to.  

I didn't think you were complaining at all.  Just thought if you find yourself in the hood why have to add that extra expense if you don't have to.  Plus an apartment is more comfortable than a hotel.  

I will keep my fingers crossed that you get the right surgeon and all the necessary approvals.


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## izzi'smom

^^^True...much more comfy. 
The Yawkey is an old historic home beautifully renovated by volunteers for families of patients at Childrens. It has common living areas and separate bedrooms and is $30/night if you qualify and there is a room available. There is a video on their website with pics of the reno...I am so touched by the things people do for strangers.


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## Twiggy930

So sorry to hear about all that you and Izzi are facing.  As I read your posts I am inspired by your approach to what must be a very hard road to face.  I have so much admiration for the way you are advocating for your daughter and collecting information for the future.  Izzi sure is lucky to have you in her corner!  I wish you both all the best and hope that everything goes smoothly.


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## DustyKat

Being paediatric wouldn't you be allowed to stay in the hospital room with Izzi? 

Dusty. xxx


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## izzi'smom

FOr the initial consult she won't be hospitalized (I am assuming it will not all happen in the same visit), and her dad and brother will come along for the surgery. In the past when she has been hospitalized I room in with her and her dad and brother stay at home. (Home is 5-6 hours away...I couldn't leave my son for 1-2 weeks and her dad wants to be with her for surgery)


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## imaboveitall

Just checking on Izzi's thread and leaving some LOVE :kiss:


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## DustyKat

Oh, I see. I hope you can find something that is close and reasonably priced...:hug: 

Good luck! 

Dusty. xxx


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## Dexky

I missed a few days Angie  I'm sorry Izzi's having to go down this road but after reading so many success stories on here about stomas, I'm hopeful she'll feel so great there won't be any negative reaction from her.  Good luck with finding that surgeon and the cheap room!


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## izzi'smom

Today reinforced that we need to do something soon. Izz is on spring break...we went to the zoo. We were there 2.5 hours and visited the bathroom 5 times, plus had to stop once on the 30 minute drive home AND had to rush in as soon as we got here to go. She complained of pain for half of the time we were there (I pushed them in a double stroller...we never would have seen half of what we did without it).
Her c-diff is neg...we let her stop the vanco as taking it was making her vomit 4 x a day and (she claims) making her belly hurt. 
Can't wait to get things moving here and get her feeling better!


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## ChampsMom

Oh my goodness... my heart and prayers are with you all... This stupid, yuck, no good, rotten, messed up disease... You are a rock Angie... Izz is so lucky to have you.


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## imaboveitall

Poor doll. :kiss:
I'd be pestering them for a sx date like tomorrow. I hope it happens very quickly.


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## DustyKat

Onwards and Upwards Angie! :hug: 

Dusty. xxx


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## Sascot

Hope she feels better soon!! Good luck getting everything organised for the surgery.


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## Zoodles

Hope she gets the surgery date soon.  

For the secondary insurance, do they adjust for the medical expenses in your state?  We were above the allowable income, but when our medical expenses were factored in we did qualify.


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## izzi'smom

Hmmm...not sure Zoodles...but even before I went back to work FT in Nov, we made too much (her dad and I are legally still married, although we have been apart 2 years). I doubt it would help. 

We are back on PRED  in an effort to curb her weight loss (4# in 2 weeks). She was in the bathroom 16 times so far today and has a crazy rash. She had a birthday party today and sat on my lap for most of it while her friends danced and played. 

Plus her brother has pneumonia. I took him to the doc for a cough that wouldn't go away after WEEKS. Bad momma!!! Poor kiddo! 

Still haven't heard re:insurance approval, although my boyfriend *ahem* I mean our old doc from Boston called while I was working...he is supposed to call back tomorrow. <3


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## my little penguin

IF she has anything else going on like speech therapy  etc..then you can qualify for medicaid through most states "loopholes" regardless of income.

Good luck.


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## LilyRose

I just wanted to say that I am thinking of you all.

This is such a hard time. But I belive better times are round the corner.
Take care of yourselves,
LilyRose


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## dannysmom

Hope the pred helps some now. Sorry your son has pneumonia - hopefully he will respond quickly. (You made me lol with your post .. "ahem". Thanks. I think we need a LOL button near Thanks for you, Dex and Dusty ... and imaboveitall and her poop   )


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## imaboveitall

*sob* at sitting on your lap while friends played...with V a shut in for five months I know that feeling...:frown:

She's such a beauty.

Just some hugs :Karl: and love...


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## izzi'smom

Still worried...she vomited up the little I got her to eat for breakfast, plus she was in the bathroom hourly last night and is bleeding again....I think I am going to suck it up and let him admit her for fluids, IV steroids, and possibly a new ng tube.  Awaiting calls from a couple of docs to help me make my decision.


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## momoftwinboys

So sorry to hear she is not feeling well. Hope she starts to feel better soon. That beautiful girl of yours needs a break from feeling yukky and to be able to play and have fun like most little girls.  Sending good thoughts your way


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## Tesscorm

Angie, I wish Izzi was doing a bit better :ghug:  I know you prefer her at home but maybe she will feel better if she can get some meds, liquids, nutrition at the hospital for just a few days.  And, knowing she's getting what she needs may lessen some of your worry as well.  Hoping she feels better soon!!!  :Karl:

And, I hope your son's feeling better soon too.  You sure do have a lot on your hands right now.    Keeping you all in my thoughts!


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## izzi'smom

SO Izz and I hit the dentist today (overdue for our 6 month cleaning-bad momma-again!). She lost her first tooth-YAY! and I somehow spent an hour in the chair for them to evaluate how good of a cleaning I need the next time i go-WTF!!?!?? Like I have time for 2 friggin visits! 
I am so stressed out today I dusted off my gin bottle and took a shot (Tim (her dad) is driving to the hospital-thank goodness we get along so well). Now if only the inebriated tooth fairy doesn't forget tonight! :0


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## polly13

Hi just to let you know I am thinking of you and Izzi and hopefully you will get sorted out soon


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## DustyKat

:hang: Angie! :hug:

Dusty. x:heart:x:heart:x


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## badasdart

Im new to the forum, I am also new to chrons. I will include her in my prayers.


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## izzi'smom

We are inpatient...more news as I get it!


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## izzi'smom

I have seen our doc 5 times since we got here at 3...he is trolling the place still at 11:30 (handy as it kept izz off the monitor despite orders, got the meds I needed ordered, and he has answered most of my questions and provided a few more. He brought up cgd (chronic granulomatous disease), for which she would be an odd fit. He still can't help thinking somethingin addition to crohns could be at play. He brought up tacrolimus again, saying he could consult with childrens to administerit while we wait for our consult. I asked if he had a chance to research ldn yet and he hasn't. I left her ewntire file at home :banghead: but will see if tim can get it for me tomorrow. 
I appreciate that he stopped by (I thought he had forgotten) but now my mind is reweling with new info and I can't sleep.
 Izz lost her first tooth today and her nurse left a note on thewindow for staff to remind me. When I went to retrieve it there were donations taped to it...so sweet!  Her doc chipped in too


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## Dexky

Hang in there Angie!  I'd imagine most of your sleep lately is the drop from exhaustion type.


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## DustyKat

Thinking about you and your gorgeous girl Angie...:hug: 

Dusty. xxxxxxxx


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## imaboveitall

i enjoyed your last post, Angie  Sounds like she is in good hands there, that doc sounds like a gem, what doc comes by that many times, is still thinking of alternate dx...he may be a Saint too. 

Love to you both :heart:


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## izzi'smom

Her doc has already been by this am- I swear he didn't sleep! He asked infectious disease to check on us in case he is missing something and has called both boston and.chop this am. ID residents have already been by, and the attending will be around "later". 
Izz is doing pretty well-the iv fluids helped and she is looking better  thanks for all of the love!!


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## Lisa

Great big hug to little Miss Izzi!!!  Glad to hear she is looking better!


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## izzi'smom

ID fellow stopped by-will be doing a blood test in the am for cgd. He said it is a pretty rare disorder (even more so for females) but because of the severity of her anticipated treatment he would be happy to rule out any and all disorders.


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## DustyKat

So fab to hear that Izzi is looking better! And so fab to hear that you are being so well looked after! anda:

Oh Angie, sends you loads of love and healing thoughts hun...:Karl: 

Dusty. xxx


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## imaboveitall

Oh, excellent, it sounds like little dollface has a great med team willing to look at obscure things...awesome for sure. 
I think you def did the right thing by going inpatient.


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## Jenn

Sounds like Izzi is getting great care!


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## dannysmom

I hope they continue to make Izzie feel more comfortable. Thanks for posting the obscure testing they are doing.


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## izzi'smom

So an ezciting day for us (in a way-twisted I guess). Probable release tomorrow-her doc was happy to get some I & o on her and daily weigh ins. She has only had clear liquids but hasn't vomited. Our old doc called...YIPPEE!
He agrees...while he said that taacro works well in many kids it is a short cterm bridge-it getsthem healthy enough to be able to plan elective surgery which will likely result in a better outcome. He is calling his old asst to try to get us in for gi within the next couple of weeks with a gi he rwcommends.


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## Dexky

Angie, your telephone shorthand keeps me on my toes!  

I hope your wait is short!!


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## izzi'smom

Omg, mark-my phone kills me! I am glad that you recogize that it is my phone and not my ignorance. And outrageous grammatical/spelling errors. It likes to insert periods in the middle of most of my sentences also...wanted to keep things from getting boring around here!


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## izzi'smom

We are home!
I apologize for the rambling and unfocused posts!
Izz is feeling the same. She was having less pain in the hospital (due to being on clear liquids), but stooling just as frequently. SHe hasn't been nauseated since admission, though, nor has she vomited.  
We are otherwise in a holding pattern.


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## my little penguin

:yoshijumpjoy::mario2:

For feeling better


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## QueenGothel

Glad you are home. Glad the hospital helped her feel a little better. I hope you get some answers soon.  Take care.  Hugs to you and Izzi.


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## DustyKat

So fab to hear you are home Angie.  I hope all is continuing to go okay...:hug:

Dusty. xxx


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## izzi'smom

We got a tentative date of 5/7 for Boston (it is my week to work but if it can't easily be adjusted I will figure out how to switch). 
Izz made it to school today but I had to take her brother to the pediatrician (30 minute drive) and we had to stop at seedy restrooms on the way there AND the way back. I can't wait to get her seen!
Her dad may drop in here...he needs some support and I keep trying to tell him you all are my sanity!! )


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## Brian'sMom

[QUOTEHer dad may drop in here...he needs some support and I keep trying to tell him you all are my sanity!! )[/QUOTE]

I agree. We need each other, Moms and Dads!! Like the post I just read on this whole think affecting our weight...It really helps to listen to each other and know that we're all in this together. And NO ONE understands like other crohn's parents. I have to check in here for my sanity too.


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## momoftwinboys

Congrats on a tentative date.  When will you know about availability at the Yawkee Inn?  Would be sweet to be able to stay there.  Boston is a great city but expensive...  Pretty sure there is a T stop (mass transit) right by the hospital.  Often much easier/quicker to take the T than drive and park in the city if you end up staying somewhere else instead.


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## izzi'smom

The Yawkee can only be reserved 48 hours in advance for stays less than 4 days...so not for a bit. The t stop is a few blocks away, although after three days there last year we never *did* figure out which train to get on to get back to our room (our last day there we walked 3 miles...in the wrong direction lol!)I think our rooms were close to $200/night at the reduced hospital rate-but nice as we stayed 1 block from the hospital. Izz is looking forward to returning.


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## momoftwinboys

Three mile walk...hope it was a nice day.  Pretty sure it is on the green line and you are right that is the most complicated one, easy to get confused there.  Lived near the green line for a year and was always a little hesitant about getting on the right one.  Grew up south of the city and the red line was easy to navigate to get into the city.  Hope you get lucky with the Yawkee.


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## izzi'smom

It *was*...thank goodness! We only got stuck in the rain once, and thank goodness for friendly Bostonians who offered to help us multiple times!
We are confirmed for the 7th, GI and surgery consults. Insurance paperwork was faxed today. 
We are d/c ing Humira as of today and beginning Tacrolimus and Bactrum when I get off work and get the kids ft Thursday. (cracks me up that our GI offered this up before I mentioned it-he wants regularity with dosing and blood tests and will wait until it is my week to start her because of it so he can get better result reports )
Izzi had a WONDERFUL day Monday. She was fun and sunny, happy-my old child back. I had forgotten how much this disease had taken away from us until I saw her yesterday. I am not sure what caused it-she is unhappy again today-but she also had an increased appetite over the weekend. 

I "met" another local mom (30 minutes away) over the phone this week-her dd is 8 with CD, diagnosed 2 mos before Izz, we go to the same office and both visited Boston for second opinions (funny because there are other options...New York and Philly are also "nearby"). It was great to chat with her over the phone and I look forward to getting our girls together before Izzi's surgery; I guess her dd is pretty vocal about her stoma and will show it off readily. I am grateful to the nurse at the hospital (who was just "covering"; not even our nurse) who offered to pass along my info to another mom <3. 

As Dusty would say, onward and upwards!!


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## Tesscorm

Good luck Ang, I hope everything runs smoothly from the consult to the meds to the room!    I think it'll be great for Izzi to meet a new friend who can share her experience. :Karl:


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## Crohn's Mom

Oh Ang ~ I'm so glad to hear the Izz is going to get to meet someone just like her !! I can tell you that's all Gab ever wanted when she had her ileostomy ~ she just wanted to feel like she wasn't the only one.  She never got to "meet" anyone; she did however get to "see and hear" someone when we attended the CCFA's Take Steps Walk last year.  It was one of the ladies who was speaking at the event. Oh if I could have taken a picture of her face the moment the lady said she had an ileostomy...You could see Gab's emotions all over her face.  She didn't feel "alone" anymore.
Izz may not feel this same way right away because she hasn't had her surgery yet, but most likely the moment she realizes and remembers, she will.  Hopefully, you can meet up again after the surgery if all goes well the first time.    I just think it's so wonderful that Izz gets this opportunity ~ take it from this previous ostomy momma ~ its a wonderful thing !! 
Awe....I wish you all nothing but the best on the 7th !! You both deserve so much happiness and relief from pain! :kiss:


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## QueenGothel

All IBD kids are different of course.  But I found that Rowan got a lot better when we took her off all the drugs and just was using the predisone and OTC meds.. I hope this happens for Izzi. It seemed like all the drugs had one thing in common...The side effect of rectal bleeding and Rowan was always in that 10% that had that rare side effect. I really think she is going to do great with her ostomy.  I know it is hard to explain and even harder to imagine.  It was all pretty scary the first couple days but she will get over it once she realizes it makes her able to have fun again. To never have to stop bc of the pain.  Rowan is like the energizer bunny now.  Hasn't been this way in 6 months.  Your almost to the end of the race and your doing great.


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## QueenGothel

They will probably tell you they want her to be 6 weeks off the Humira before surgery.  It becomes a much safer surgery if she is not on pred and Humira. That is what the surgeons required for Rowan and she was one in need of frequent blood transfusions. I would assume the same and I would have that question ready bc there is more of a risk for infection.


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## izzi'smom

Well, I called our docs office yesterday to see if I could get the scripts and get going. They were wondering if she needed to be inpt to begin Tacro and were waiting for a callback from Boston. I emailed Dr. Essers and he got right back to me...he will call them this am to explain it better to them. This is why he is my boyfriend :heart:

Also, a big kudos to my MIL who is taking both kids (along with a couple of my nieces) for a sleepover tonight. 

She works full time, sells candles that my FIL makes on the weekends, brought dinner over last night, and still has time/energy to have my getting up all night daughter over to play. :heart:

This is something my parents (currently both unemployed) are not sure they are willing to do right now, so I am super appreciative of my mil!


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## DustyKat

Yay for Dr Wonderful! :wub: 

Oh wow, your MIL sounds fab! Enjoy your alone time hun, it is so very deserved...:hug:

Dusty. xxx


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## crohnsinct

Listen to Mary speaking like a pro already.  I have no doubt you will be doing the same in no time. Sounds like you have a lot of angels looking out for you.  I continue to pray every day for Rowan, Izzi and your families..you are in the home stretch hang in there!


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## QueenGothel

Lol by no means am I a pro.  They had to pound the 6 weeks thing into my head cuz I wanted her pain gone.  Then I was kinda bummed bc she was the happiest and healthiest I have saw her in months. Knowing I was taking her to the hospital and she would feel like she were hit by a truck and I did it.  But that wasn't the outcome.  Trying to get in front of the hindsight and of course I didn't think she would be playing after a day of surgery.  Kids are amazing.


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## imaboveitall

Checking in on Dollface and happy to hear you have a date for sx! Sweet. :thumleft:
Looking forward to reading another success story like Little Rowan's...two stars on here...:medal1::medal1: Rowan and Izzi 
Much love.


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## izzi'smom

My "sweet dollface" is miserable lately (you calling her that makes me lol some days J). Cranky and rude...but a lot on her mind. 

We start Tacro Sunday, get bloodwork Monday, and start Bactrim Wednesday. 
I have to drive 45 minutes to get it tomorrow...some days I hate living in a smaller community- but I am thankful we can get it and get her started. 
So 6 am meds plus a supplement (still haven't worked her 3 other supplements back in), 2 mid day and 6 pm meds. No *wonder she's cranky! She's pretty stoked about no more Humi shots...although she got nervous when she saw me get mine out today lol! She wouldn't even face me while I was giving it!


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## Crohn's Mom

OH goodness...a little PTSD ?! LOL

Poor Izz... I think she gets a cranky pass here and there 
And you too momma ! At least you can settle your cranky with a nice glass of wine if needed 

big squishy hugs for you both!


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## QueenGothel

Angie, how did I miss this?  You have IBD? I didn't realize this... How long?


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## StarGirrrrl

I think Angie takes it for a skin condition


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## DustyKat

StarGirrrrl is spot on Mary, it is for psoriasis. 

Dusty.


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## my little penguin

:goodluck: for the new meds and possible sx


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## imaboveitall

Angie, with that face no matter how cranky she's still a doll


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## izzi'smom

Awww...thanks, all. 
Very true...psoriasis and IBS here...nothing like IBD, just annoying 
Just got off the phone with her doc again...I can't figure out if he is a bit anxious about Tacro (he has had other [transplant] pts on it) or what but he just called (for the third time today) to remind me to page him if I need something this weekend and let him know if I have any trouble picking up her meds tomorrow. Love getting the reassurance and I am grateful for the support...he told me to get off of the computer and stop researching tonight so I will sign off  I have a race to run in the am!


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## izzi'smom

Did well in my 5k...my best race time ever! 
Started Tacro yesterday..need to get bloodwork today. Doc told me "after third dose" but everything I am reading says to wait until just before the fourth dose-to get the "trough" reading of Tacro in the blood. Called to confirm this info but haven't heard back yet. 
She is the same...up all night (in bed from 7:30p-9a last night) and complaining of twice as much belly pain as usual. SHe does seem to have more energy when she *is* awake though...pred maybe?


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## Sascot

Well done for the 5K - I managed to drag myself to the school and back today :lol:
Sorry to hear she isn't great just now, not too long till the surgery though.  Your doc sounds great!


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## izzi'smom

So we met our new boston gi and surgeon yesterday-they are both super nice. The gi didn't have much to add, but the surgeon talked with us for a while. We have some leeway in choosing a date because of the tacrolimus, so we will probably give it a few months so that I can take more time off work. 
It never mattered much if she had crohns or uc (she had a cecal granuloma-her only sigh of crohns). However, her surgical outcome varies depending on diagnosis. Her surgeon tells us it would be a. Three part surgery- remove the colon, leaving the rectum. Let her heal, dc some meds, and seehow shedoes. He tells me even if she *is* a candidate for a j pouch, she may be young (maturity, not age/size) as while he has no problem doing the surgery, it requires regular digital rectal exams and daily dilator insertions.  So when the time comes we will have more decisions to make. 
We had a crazy long dday yesterday (ended up being late for our apppt and I wasn't abble to. Sleep) so we decided to go straight home today.


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## DustyKat

Thanks for the update Angie. So fab to hear the docs are nice and that you have some breathing space! Yay! 

Dusty. xxx


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## Tesscorm

It sounds like the apptmt went well!   And am glad you liked the GI and surgeon!

I hope Izzi continues to feel better on the Tacro so you have time to prepare.  :ghug:


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## crohnsinct

Glad you like the docs and have some time so you can breathe a little easier.  Man, you have the patience of a saint.  Waiting more would kill me and all the decisions you have ahead of you...you are an incredibly strong mamma!  Hope you got your much deserved rest and hoping things stay good until surgery.


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## izzi'smom

Crohnsinc, I would prefer to do it sooner...but my fmla request was denied because I didn't work enough hours last year. I have to hit 1250 before I qualify, and without it they can fire me for taking more than a week off (I work a special shift and don't accumulate pto). I am working as much as I am allowed to get the hours faster (it would also be nice to get the surgery done beforeshe starts school in the fall, but jobs are hard to come by in my field right now, and I'd rather not lose mine, although I will if I have to).


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## QueenGothel

My best to both of you.  You will do great!  I pray you can reconnect and its UC, but regardless; once the pain is gone you and izzi will feel much relief.   How much pred is she taking now?  Did they have you stop the Tarco for surgery, if not are they planning to?  I imagine it makes the surgery more complicated with the Pred and Tarco. Or no?


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## crohnsinct

Ah forced to wait....doesn't matter you are still my idol!


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## izzi'smom

Mary, she is on 10mg twice a day, although we are looking at dcing it as it isn't doing much, if any-thing. We will stay on the Tacro until after surgery. He was concerned that she was steroid dependent for sure. although I don't believe she qualifies as "dependent" when it doesn't help loL!

I am fairly ambivalent about reconnecting- the j pouch is quite a bit of work. Our surgeon tells me she may end up with as few as 5-6 bms a day eventually anyway, after about a year, plus the possibility of leakage. (Aren't we dealing with that now???!) Plus digital rectal exams and daily dilation. I feel that we will start with the first surgery, try to dc meds, and see how she does. (Her surgeon says he will do a colectomy, leaving the rectum intact. If possible, a second surgery would involve removing the rectal mucosa and creating the ileoanal reservoir, and a third surgery  would take down the ostomy and reconnect.)
At the very least I wonder if she would be better off being a bit older/able to deal with rectal examinations and help to make the decision (ie: I want to use the restroom normally and realize this requires digital rectal exams/dilation) 
I inquired about the trio of blood tests to differentiate between Crohn's colitis and UC (the single granuloma found on her first scope was not reproduced during her second scope and visually she is UC-like), but her surgeon says it is inaccurate...I would like to see if our regular GI will pull them with her next draw anyway, as now my curiosity is piqued. 
@crohnsinct :ghug: ty!

Love our GI...she called me back about 2 hours after I left a message for her-and the surgeon, who called me the CEO to Izz's dad lol! Appreciate that he acknowledges my type A personality and can laugh about it. 

So we are in a holding pattern for now!


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## QueenGothel

Is the digital dilation bc of it being a 3 part surgery?  Rowan doesn't have that on the agenda.  We do have to do a MRI with contrast to check for leaks with the pouch but they never mentioned this dilation to me. Now you gave me a new question for Rowans surgeon.  They said it was a pretty quick surgery to take it down.  Hmm... You got my fingers tapping.  

You should have more of a clear diagnosis after the first surgery with the pathology of the colon.  I wonder why they keep the mucosa in tacked?  I would be worried that it would keep getting inflamed.  Time to google.  Is that not where her disease is?  I know the whole colon but was it always present in the rectum?  I believe, (anyone correct me if I am wrong) with UC it always begins and is the most severe in the rectum??!


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## izzi'smom

From what I understand (and I may be completely wrong) because you are reusing the rectum/inserting the small intestine some people have trouble with the sphincter dilating. He made it sound as if it was something every patient went through, but again, I may be wrong. 

Looks as if I won't have to worry. Izz has been crying for two days that her mouth hurts after biting her tongue. I finally looked in there today and she is full of ulcers.  Too coincidental...she is crohns for sure and not a candidate for a j-pouch. While I wasn't sure it would be worth doing, I wanted her to have the choice someday. I am again thankful for her doc, who texted me some OTC remedies at 8pm since the pharmacies are closed.  
Now I feel pretty bad...I thought she was making a huge deal out of biting her tongue. We were in the car for 5 hours, in a docs office for two, and she was either crying that her mouth hurt or that she was starving (because her mouth hurt and she refused to eat). I TOTALLY yelled at her for it. 

:award2:
(My mother of the year award. AGAIN! lol)


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## crohnsinct

Aw poor Izz. 

Nice try Ang...you are still my idol!


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## QueenGothel

Poor baby, and mommy.  Don't beat yourself up.  Hugs to you momma.


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## killcolitis

Hi Angie,
I'm a new member though I've been reading this board for a while now and it's been very helpful.  I have a now six year old dx at 3.5 with pancolitis (UC knock on wood).  So, I understand some of what you're dealing with and I am so sorry.  
Your last post about mouth ulcers prompted me to register because if they've never been a symptom for her before there's a good chance they could be caused by the tacrolimous.  It's not uncommon for immunosuppressive drugs to cause this (happened to my daughter on Imuran and our GI made us get off asap).  It might or might not be a sign of toxicity.  You might want to google this and speak to the GI about it?  Just a thought and sorry for butting in on your thread...
Sherry


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## killcolitis

Hi Angie, 

I tried to attach some links for you (I know you're busy, can't imagine how you do it really) but they won't let me unless I've posted for a while.  Might be good to talk to your pharmacist as well?

Sherry


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## QueenGothel

I goggled it and there are link is everywhere.  Sorry for Izzi having the side effect but it keeps my hopes up for UC. I hope this is the reason why she is having mouth ulcers. Man these drugs are brutal.


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## Tesscorm

Aww Angie, we mom's are allowed to make mistakes too!  Emily hurt her foot in soccer once, (had gotten frostbite, which we never imagined at all!, from the ice pack) and, the more she complained about her ankle, the more we told her to ice it!  AND, great parents that we are, we kept telling her that twisted ankles come with soccer and to 'suck it up' if she wanted to play soccer!  My mom :facepalm: finally came to Emily's rescue when she offered to take her to the clinic to check on her ankle the next day...

Would probably make a fun thread - What have you done wrong as a parent?  Please limit responses to your Top 25! :lol:

I hope Izzi's feeling a bit better and that the sores are quickly relieved! :Karl:


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## crohnsinct

Would probably make a fun thread - What have you done wrong as a parent?  Please limit responses to your Top 25! :lol:

:roflanim::roflanim::roflanim: Literally laughed out loud!  Limit responses to Top 25!  Hysterical


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## Jenn

Alex had a bout of bad mouth ulcers last fall. The doctor suggested 'magic mouthwash': 1 tsp liquid kids benadryl, 1 tsp maalox, swish and spit, don't swallow, twice a day. it really helped the pain for him til they healed.


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## izzi'smom

We have been doing the benadryl/maalox every hour and chloraseptic every 15 minutes. I am told our magic mouthwash (lidocaine mouthwash) will be ready at the pharmacy in 1 hour. TY kilklcolitis...off to google...so much for sleep before work toight but I am super hopeful it is a SE!!


ETA Texted her doc who thinks it is unlikely that it is toxicity as her labs were at the low end of normal...we were planning on drawing her levels this week and I will be sure to get it done tomorrow now. Thank you so much for piping up...it is something I hadn't considered. :kiss:


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## Shansmom

Ditto on the Maalox/Benadryl mouth wash.  It worked well on Shan when she had mouth ulcers as well.  Angie - you are a great mom.  Izzy is in wonderful hands.  We all learn as we go along and we learn from each other.  Hang in there.  Take a deep breath.  Thinking of you both.


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## izzi'smom

...and the saga continues

Her friends mom texted me this am that Jule woke up with mouth ulcers after our playdate yesterday :shifty: It was coxsackie :facepalm: not Crohn's, and we totally infected her friend! I am going to assume that Xaviers awful teething episode last week was also coxsackie related, and that he infected them both. :ywow::thumbdown:

The great news is that I am back down the differential diagnosis path, able again to entertain the notion that she may be UC!

I think her doc gets the Saint2 status, J...for putting up with my crap! I texted him last night about the Tacro toxicity and he is so good about it...he must hate the Google competition some days! PITA mom and Saint2-what a team lol! He still took a look at her (to save us from a peds office visit) after getting her labs drawn, plus texted me the results this evening.  Her Tacro levels should be back tomorrow.


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## Johnnysmom

That's great news.  My daughter Brooke had Coxsackie and it was soooo painful for her.  She really didn't eat much at all for a few days.  She was vomiting also.  Sorry Izzi is sick but so happy it doesn't look like Crohn's.  Brooke took about a week to get better.

Hang in there and let Dr. Wonderful take care of you both.  He sounds like a great guy.


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## QueenGothel

Like sands through the hourglass. The crazy world we live in where we hope for a virus or UC.  I am full of hope again with you.  I hope she start feeling better soon.


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## crohnsinct

Go figure! 

I am only 4 months in and I can't tell you how many things I have assumed were due to O's IBD...and the more I read here the more I find other things in the past that should have tipped me off. 

What a bunch of whackos we must sound like celebrating coxsackie and UC but YAY!  Back to hoping and planning for the surgery etc.


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## mikayla

izzi'smom said:


> Izz got her ng tube and has been crying since 3:30. She is finally asleep (8:30) and now it is my turn to cry.
> I swear she has been in the bathroom twenty times today, plus she has vomited three times. Her belly hurts, she has an awful rash on her backside, and her throat is sore. She vomited up the 20 ml of peptamen I gave her...I feel so awful!!! She said today "Why do *I* have to always do this stuff"
> 
> So I am hoping against hope that her rash will be clear, her throat will feel better, and the Prevacid will work against her nausea in the am. A better day, right?! I feel like it can hardly get worse.
> 
> Plus my parents, after telling them it wasn't a good night for a visit, *had* to pop in for a visit. I love them to pieces but I truly had my hands full and Izzi was just beside herself crying. They brought her some lovely flowers and me a beautiful ring for my birthday but AARRGGHH! Plus I had to put my pj's on and say goodnight three times to get them out the door.:angry-banghead:
> 
> Thanks for listening, and anyone doing EN have vomiting problems? We are doing 5-7 cans a day via gravity feed instead of night feedings per our doc's preference.


Ahhh, you are not the worst parent. Izzy is amazing and so are you! In my thoughts and prayers! Mik's Mom


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