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16 year old daughter not responding to steroids or Remicade

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Posted 6/4/2013 11:46 AM (GMT 0)
Hello. I am reaching out looking for any similar stories, comfort and advice. Approx. 2 weeks ago my 16 year old daughter was hospitalized and subsequently diagnosed with Mod/Severe UC. They immediately started her on steroids. She seemed to get better, then worse. They did 1 Remicade infusion. She seemed to get better and they let her eat a little. Food did not agree with her and she got worse again. They took her off all food and liquid and have her on TPN 24 hrs a day for at least the next few days. Her bloody BM's slowed down but now, 4 days post Remicade, they are speeding up again (9 throughout the night), that is the most to date. Doctor explains that this means she is not responding to Remicade, although pain seems to be much less. No pain meds anymore. Hurts before, during and after BM. I am absolutely freaking out, to say the least. They are talking about doing another Remicade infusion on Thursday, one week from 1st infusion. This scares me as well considering how weak she is and how toxic that is. She has also had 1 blood transfusion when hemoglobin got low, this was last Thursday as well. I suspect she will have to have another one since bloody BM's are not stopping. Any comfort/advice you can offer is most appreciated.
Posted 6/4/2013 12:05 PM (GMT 0)
Hi JP04 I'm sorry to hear about your daughter, it must be really tough for her being 16! I find it really tough and i'm 29. I don't really have any advice because I think you both have to make the decision of what to do together but if it helps I can tell you that I was actually on Remicade when I was pregnant (stopped for a few months but am on it again now). My baby was born perfectly healthy so although it is toxic, it depends how much she needs it. Also for me Remicade took a good 6mths to work although I did see tiny little improvements with each injection. Even now though I am on the toilet probably 30+ times a day. The TPN ive never done but I think bowel rest is a great idea and if my doctor would let me I would try it for as long as possible. Good luck with whatever medicines/ remedies you choose. My thoughts are with your daughter, tell her to be strong and try to stay positive. By reading this forum it seems there are hundreds of therapies that work for different people. xx
Posted 6/4/2013 12:05 PM (GMT 0)
Have they tested your daughter for C.Diff? Especially that she has been in the hospital; IBD'ers tend to get C-diff often and it has similar symptoms of a UC flare.

Remicade took me a few infusions before it built up in my body and got me into Remission. I was in remission for about 5 years while taking Remicade.

Is your daughter's GI a pediatric GI?
Posted 6/4/2013 12:38 PM (GMT 0)

ks1905 said...
Have they tested your daughter for C.Diff? Especially that she has been in the hospital; IBD'ers tend to get C-diff often and it has similar symptoms of a UC flare.

Remicade took me a few infusions before it built up in my body and got me into Remission. I was in remission for about 5 years while taking Remicade.

Is your daughter's GI a pediatric GI?

They have tested her for C.Diff, is there ever a false negative that you are aware of? She is with a pediatric Gastro.

It's very good to hear from Remicade users. How close together were your Remicade infusions? For those going to the bathroom often I'm wondering if you have bloody BM's? Hers is all blood. She has no food in her system, just TPN, which does not produce BM's.

Thank you so much.
Posted 6/4/2013 1:25 PM (GMT 0)
You get 3 infusions close together in the beginning, this is called loading doses. After the loading doses it goes to every 6 or 8 weeks.

I'm sorry to hear that your daughter has this. It tears me up hearing about children and teens getting diagnosed. I can sort of relate because I had a scare with my teen daughter not too long ago. But thankfully she doesn't have UC. She was diagnosed with IBS.
Posted 6/4/2013 2:03 PM (GMT 0)
You can get a false negative for c diff so they should test again to make sure. That happened to my mother in law. Its not unusual for the Remicade to take several infusions before there is an improvement. The first three infusions are close together and are called loading doses. And then typically every 8 weeks after that.
Posted 6/4/2013 2:09 PM (GMT 0)
Is she on Asacol or Lialda? I was able to pull out of a mod/severe flare up with Asacol alone when I was younger. I agree with what has been said, Remicade can take a few infusions before it's effective. Also, there are a lot of false negatives in c. diff tests from what I've heard so definitely test again. I am so sorry you're going through this and I hope she's better soon.
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