Hi, The meds can be tricky because some work for some people and some don't. Remicade is a pretty significant medication and I don't necessarily know what approach the docs take if it ends up not working. As far as food, it's just hard when you are flaring. Some people do the BRAT diet when flaring because it's bland: http://www.webmd.com/children/brat-diet

Still, it may not be agreeable. I think when you are really in the weeds with a flare up, it's just eat what you can tolerate or crave. Staying hydrated is really important.

You might want to check out the CCFA website. Lots of educational information on medication, treatments, etc. http://www.crohnscolitisfoundation.org

Thank you so much for the reply rmb, being hydrated is very important and the brat diet is where we started off. I will check out the crohnscolitisfoundation.org and if you have any more advise or personal experiences I would love to hear, thank you.

This group is pretty quiet lately so please don't feel bad if others don't chime in. I know that CCFA has a forum as well that is pretty comprehensive. I wish I had advise to make it easier for you as a parent. I know it's hard to watch her go through this. I guess I would say that having a GI who partners with you and your daughter is invaluable. I found a great GI doc who really makes me feel like I have some control in my care. This is a life long disease and it's important to feel like your doctor is in it with you.

Thank you rmb, just having one person reads this is greatly appreciated! Yes I will find out everything I can learn from & thankful she has a great G.I Dr.

I have found best relief with Western Herbal Medicine, and also Ayurvedic Medicine. Best to stick to carrot juice freshly prepared, and things like Kitchari which is very easy to digest. Avoid or minimize hard to digest foods (meat, dairy, gluten), as puts too much strain on the body.

I was on Remicade and it didn't work that well for me. My doctor switched me to Humira and I was on that biweekly for several years. It was an improvement but still not great. Two years ago I was switched to Stelara and it has made a huge difference. Not saying that this is the answer but over the last few years there have been quite a few developments for treatment options.

Talk to the doctor, check out the websites rmb listed and good luck!

I'm taking Lialda. Which I've been on for a couple years. I've also been on a steroid called uceris. I had c diff for months. Once i got rid of that i was pregnant. Now i feel that Lialda is no longer working. Not able to take the steroid because i as breastfeeding. I felt good for a little while, when i was taking both.

I take Lialda and Humira shots, not totally in remission but doing much better than I was. Food is very tricky, everyone is different but when flaring I try to stick to the BRAT diet but doesn't always work. Staying hydrated is very important!!! Prednisone works well but can't stay on that for long I pray that the doctor finds a med that will help your daughter to feel better. Best of luck!!

I hope your daughter is doing better. I don't have much advice as I am waiting for my 7 year old son's 3 Rd Remicade to hopefully help. He was perfect for a month. Watching him barely eat and seeing the blood and pain is torture. So I felt for you when I read your post. I hope all is well.

Sorry Everyone been off of here as Daughters condition has sadly deteriorated. Please send me a PM.

I'm o sorry to hear this, keeping her in my thoughts and prayers...