Posted 11/3/2018 4:31 PM (GMT -7)
I’m really sorry to read your post. I am in the exact same position, with my 7 year old diagnosed with Crohn’s on 01/09/18. She had bad bad diarrhea all summer, stopped eating, lost weight & ultimately had a scope, with biopsies taken confirming the diagnosis. I had never even heard of Crohn’s & am still in shock & have spent a lot of time crying too. So young & such a long & uncertain path ahead.
My girl was given no alternative but to do 8 weeks of total EEN. We’re based in Ireland. Just 7 shakes a day with water. We got 4 different brands of the shakes & she ultimately settled on 4 flavour (across 4 brands) that she almost liked! Her two sisters were allowed one each per day, at her discretion & this really helped. Her classmates thought it seemed very glamorous & complained that they had to eat real food. She went to school, continued her hobbies & gained weight. Her chronic diarrhea stopped after only the second day & terrible pain & energy levels improved dramatically within a week. Having a fixed plan of action to follow really helped me. It also brought her back to remission. Perhaps you could ask your GI?
Anyway, she finished the EEN & was put on 25mgs 6MP. This is where we’re coming unstuck. She had it for 10 days without issue, but then became violently sick, vomiting, diahoerra, sweating etc. we stopped & tried again last night, but she woke up vomiting after only one dose, so I guess that’s 6MP crossed off as an option. I’m kind of left hanging now, wondering what happens next. I wonder is there a list of drugs & what drug comes next, or if she’s intolerant to 6MP, what might suit her instead?
SadMom, I’m happy we’ve found eachother as it is a very lonely time. If your little girl is not well enough to go to school, who cares? Her health clearly takes priority right now. I would not let the school put you under pressure. For my girl, the main time she was really really upset (bar blood tests!) was when she missed a day at school. It helped to keep her life normal as possible & probably the worst part for her is seeing me so wildly stressed over it all. I try my best to keep it together in front of her but she has watched me bawl crying in every medical consultation we’ve had so far & I can see that causes her fear-it so so hard 😢
If anyone has any advice, re what comes after 6MP, I’d greatly appreciate it!