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We had to adjust schedule for my son so he never dropped more than 2.5mg a week after he got to 20. Otherwise he flared. I don't know if there are studies or what protocol is but he had such hard time Drs put him on Half EN and then full EEN to prevent a flare as he approached zero. It worked...

Hi. My son did EEN two years ago for about 6 weeks when trying to taper off steroids. Now he does about 1/3 up to 1/2 on EEN. He has used Peptamen Jr and Boost. Did the drs at Boston Children suggest EEN? They were very supportive of this for my son.

I'm sorry about M. I hope the pain and urgency (and of course that inflammation) are alleviated by the entocort and increased Imuran. Steroids were wonder drugs here - until it was time to wean. I think I'll just push for a scope and plan that will happen each year. I'm off now to google...

Maya - so M's was 200 at same time of scope? When it was in 40s did she have symptoms and how long was that before the scope? Clash - how long after surgery was 40s score and then how long until the scope that showed the inflammation? Yes Crohnsinct I'm always ready for that talk. I just...

I'm just catching up on this and I HATE to hear what has transpired!! I really hope Stelara will be approved and make a difference. You and C both have my awe, admiration and respect in how you deal with this.

My son's latest Fcp just came in at 45 (normal is up to 120 with this lab). All other bloods were fine and he is assymptomatic other than some weird joint stuff occasionally. He sees dr in a few weeks and I'm not sure if he will order a scope after doing two in last 18 months. He gets a lot of...

Hi Superdad. Thinking of you and looking forward to your update.

Second what Pilgrim said. Boston Children's told us same thing about granulomas.

Hi Sickmom. I'm so sorry to hear about your precious baby. I'm following and hoping to hear about a turn for better. Although my son was 13 when diagnosed, I wanted to chime in and reinforce what my little penquin said. My son does not have celiac but did start to flare after eating breads and...

MLP - well that stinks to have gone through all those hopes and watch them fail. Ugh. This woman was standing in midst of other head of research for Pharma companies types and I'm going to hope that bc no one said she was an idiot ha then maybe she had some belief that something was going in...

Does this ring a bell with anyone? I'm posting here because this seems to be the brain trust. :). I was in a large group recently and side conversation was about someone's child using an NG tube (not an IBD issue). I mentioned that my son had used one with Crohn's. A woman (not from my...

I get why you worry. I would too. But there really are many many other things that could he driving his trouble and most are much better than having IBD! I hope this is a temporary problem.

Hoping the weekend brings continued progress and tests on Monday show answers. Hang in there.

Is mini My Little Penguin continuing to feel better, see symptoms lessening, able to eat?

I checked in just to case there was some good news about Caitlyn. I hate this is happening to her. What horrible timing - as if any timing is good - but may this come to an end soon!

Hi Sonny. I'm sorry you have such a complex situation to make sense of. Training at a renowned hospital is a wonderful quality to have in a dr. That is one critical way to build knowledge. Another very important way is being in environment with colleagues who are leading edge, seeing many many...

Kim, did she come home yet? It makes complete sense that she would be frustrated and over this. She obviously will have expert care at home! She has made it through the worst part so celebrate her. I'm hoping the surgery pain will end soon so that she can see all of this was worth it and...

Did tests confirm infection? So sorry this is dragging on. Hope today improves.

Great to hear but so sorry he is dealing with this. Any news? Hugs. Hoping. Prayers. Positive energy. Whatever else. All of that for him and you!

Mehita, I love the part where you said "he is living a normal teenaged life". 3 years of remission is fabulos! What a great success story even though getting there was ugly. Do you recall at what point after he started Remicade that he had clean scopes and biopsies? My guess is pretty soon...