Crohn's Disease / Ulcerative Colitis Community
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Avatar universal

Mom's heavy heart for 11year old with crohns

My daughter was dx with crohns at 7yrs old.She is on a very low dose of 6mp 50mg and has remicade infusion every 8 weeks. She has been doing this since 7 years old.  Her blood work shows her CRP level  at 0.1 her SED rate level at 1 and her albumin at4.3. All looks good to me.  She is doing total EEN
( Exclusive external nutrients) for 12 weeks through a NG tube. Got 4wks left to go:) our issue  is every morning she wakes up feeling nausea and throws up.
It is only in the morning. This has been going on for 2 years. It started out 2-3x a week. She would feel "fine"  afterwards and be ok to start her school day. At times  she would go three months or so and not have any problems. Now it's 7days a week and much more intense. Doctors don't have a answer. We've tried Pepcid for stomach acid, didn't help. I thought it was a reaction to a flare, but with her labs results and being on EEN she is in remission.
Would love to hear any suggestion as it is hard to watch your child suffer❤️
1 Responses
Avatar universal
hv ur drs looked at other things because ur more likey to get other things wen u hv crohns. ive had gallstones n kidney stones because of the crohns, so mayb its something else. I no it must b horrible watching ur child go through it. I was diagnosed wen I was 8 n my parents reali didnt no what to do, I think its amazing tht u hv done ur research n no what all these things mean x
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