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Madison's story

Hey everyone,

My daughter Madsion is a beautiful 7 years old and has many health problems including:
Seizure disorder, Microsephaly, Agenesis of the Corpus Collosum, Severe developmental delay, Feeding Tube, Obstructive sleep apnea and most recently Crohn's.

Madison doesn't walk or talk and her only ways to communicate to us is by facial expressions and through moaning.

We started at the GI in February for chronic diarrea. We had a scope and biopsey done and we were told she had Ulcerative Colitis. Since then we have tried all the meds which none of them agreeded with her. We went through 4 infusions of remicade, she kept having diarrea and has gotten extreamly weak since she started with her diagnosis.

We recently had another scope and biopsey done, in the meantime while waiting for the biopsey to come back Madison was admitted to the hospital for a flare.

The biopsey came back sure enough it was Crohn's, when she was admitted we had our mind made up to go with a cure in the colectomy. We feel this should have been caught much earlier, it was hard enough to make the decission to remove an organ from your child then they tell you sorry we got it wrong.

The doctors have no idea what is going on with her, they stopped feeding her put her on TPN for two days then started her feeds again (still having diarrea). Next we tried Humira, this made her so uncomfortable like she was trying to crawl out of her skin.

Has this ever happened to anyone, the doctors think we are making this up because it wasn't on their side affects list.

They pretty much said they don't know what to do next and they want to keep her on Humira. My wife and I were thinking about going back to the Remicade more frequently.

If anyone has any advice or if this has happened to anyone you know please let me know.

Thanks,

Bob
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Bob, I wish I could offer help or advice but I can't. There is a Remicade club and a Humira Club, I think they are in the Treatment section. If you read through them, you may find some experiences that could be similar but I don't know. I hope you and the docs can find something to give Madison relief. No child should have to suffer!! Good luck to you and Madison!!
 

DustyKat

Super Moderator
Hi Bob and :welcome:

Oh my you have so much to deal with and it does make it harder when you have to depend on non verbal cues, it must be so heartbreaking to see your beautiful little girl going through all this. These are the links to the clubs if you haven't already found them.......

http://www.crohnsforum.com/showthread.php?t=6500

http://www.crohnsforum.com/showthread.php?t=4544

It is certainly no comfort but unfortunately this disease can be difficult to diagnose and the treatments can vary from person to person. I personally don't think the doctors can say anything about the side effects simply because the participants in the original studies would not have had the co-morbidities your daughter does. I have absolutely no doubt you are doing a fabulous job advocating for your daughter so continue to question and fight every step of the way. Perhaps you could keep a diary, if you don't already and that is something to present to the doctors and it is up to them to prove you wrong. Here is a link to some ideas you may like to include. When it comes to your daughters pain scale use her moans and facial expressions as a way of describing the intensity. Draw a face and indicate a smiling fcae as no pain through to a sad crying face as the worst. When you are living this day in and day out it is easy to forget the finer details.....

http://www.crohnsforum.com/wiki/Diary-Inclusions

This is a safe and friendly place for support and info and I so hope you find the answers you are seeking. Please stay around and keep us posted and any questions just fire away, we will do our best to answer them. Good luck and welcome aboard!

Take care, :hug:
Dusty
 
Hi Dusty,

Thank you and Mark for the warm welcomes.
You make some great suggestions, I will be around asking questions all along the way.
It is nice to interact with people who can relate.

Bob
 
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