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I have to be monitored by an adult rhuemy and go once a yr, unless in a flare up then i go every week. Spoke to GI, he felt the maintenance drug (which the name I cant remember right now - sorry newborn baby brain) he was planning on starting Jacob on would help treat joint pains but supports...

Thank you all for all your support and insight! Yes we had started the genetic testing before he was officially dx because I have an autoimmune disease (sarcoidosis). I stopped further testing bc at the time his dr treated him like a lab rat and wasnt treating him at all. She would prescribe...

Wishing Grace a speedy recovery! Is Remicade intense for someone so young? Going to check out some pediatric rheums now. Waiting for Benkov to give me a call to discuss and see if he has any recommendations.

Yes it has been rare to come across anyone with a child as young as he is. He has anemia and some vitamin deficiencies. The pediasure has helped a little with that. His biggest complaint is his knees hurting. He says they hurt all the time. He will play and run around to a point and then...

Thank you for sharing your daughters story with me. I never thought of it like that, the fact that hes only known this as normal. Hoping to be off predisone next week to get on a treatment plan,

We know Pittman! I believe she works with Dr. Benkov out of the IBD center in Mt. Sinai. Glad your son is asymptotic. Thank you for popping in and saying hi, its been hard because so many well meaning people just don't get it.

Clash - thank you!

I apologize for my sort of ranting post with 10000 questions.

He is only on the prednisone (slow taper) and antibiotics right now. We are supposed to start another med within the next week or so. He drinks about 2-3 pediasures a day which have helped him gain a good amount of weight. My son is 4 still only diagnosed this last January. His symptoms started...

Hello All, my son was diagnosed at 4 with Crohns disease after 3 week long hospital stays and a major run around. We are finally in an ok place and love our GI team. He has been on prednisone to push him into remission (hes been in a constant flare up since last may with the last one being...