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
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