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Thanks everyone. Echodog - I'm glad to hear some treatments gave you some relief for a while - especially the Remicade - which my daughter gets her first treatment of tomorrow. Sorry about everything that happened afterward - how terrible! Thanks for your advice about trying everything before...

Thanks! Her throat was much better just a day or two after I posted. The doctor said this was a normal reaction, FYI.

Apey - I think one of the worst thing about this disease is how it is common for kids to be diagnosed in their teens. It's hard enough being your age and dealing with the stress of school and just trying to fit in. Everything is intensified at that age as it is, and having a chronic illness is...

Sorry to hear about your experience, Ron. Sounds like you have had a rough go of things. I know experiences can vary a lot from person to person, so I hope for the sake of my daughter that this is not the norm. I'm hoping others will chime in...

My 14 year old daughter was recently dx'd with Crohn's. She has a enteroenteric or enterocolic fistula (I believe it's one or those types). They want to treat with Remicade and possibly 6-MP combo. No mention yet of surgery. So I have some questions for those of you who have been there: 1...

Thanks everyone! My insurance co (Aetna) will also be billing under medical (I found this out the other day when I called to be sure it was covered. I didn't even understand that that could be done! But it's as you say, the doctor's office where my daughter goes has an infusion center and...

My daughter may be starting Remicade soon. Our insurance company has pre-approved coverage for 6 months. After that, we have to seek approval again. Is this normal? Should I worry that it won't be re-approved? It is "open season" at work for insurance selection right now. I've been...

I am so glad I found this forum. Several of you have even responded to more than one thread that I've started and I'm really feeling supported and understood here. I am reading each and every response with great interest. Thank you ALL so very much for taking the time to respond. I wish all...

It's been a few weeks since my daughter's Crohn's diagnosis (she also has a fistula). Next week we are getting a second opinion on treatment, but it appears it will be Remicade and possibly 6MP or some other drug. At first, it was overwhelming, but I think I had the idea that we'd just give...

I just want you all to know that I have read your responses and deeply appreciate your sharing your experiences and thoughts with me. Your words of encouragement mean a lot as well. I'll continue to check this thread in case anyone else has any thoughts on this topic. Thank you all so much.

My 14 year old daughter was just diagnosed with Crohn's and she has a fistula. She is currently on an Ensure-only diet (do you call that EEN?) and feeling good. Her doctor wants to treat with Remicade and an immunomodulator. Has your child had this combination of medications? If so, what was...

That's great that the Remicade worked so well for your daughter! It's very encouraging to hear this. My daughter felt almost immediately better when she went on the liquid/Ensure diet. It's been tough emotionally for her - she, of course, really wants real food (who wouldn't?)... But...

This sounds a lot like us. They also want to put my daughter on an immunomodulator - I'm not sure which one - it may be the same as your son - Methotrexate. I'm so sorry to hear that your son is still having problems and pain associated with the fistula. That sucks. Thanks so much for your...

Thanks for your response. My daughter's procedure went routinely, with no issues. She was sedated though, unlike you. What you went through sounds terrible - I'm so sorry!

My newly-diagnosed 14 year old had an upper endoscopy on Tuesday. Last night she said her throat feels funny when she swallows - kind of like a lump in her throat - but not quite like that. She said it's felt that way since the procedure and she thought it would go away. Anyone else...

I love you all already. I can tell that I will be on this forum often. I have already received so much information from the various posts I have read - things I wouldn't have thought of, like talking to the school about a 504 plan. I can't thank you all enough. It really helps to have a...

I'm just floored. My 14 year old daughter (PAW) was just diagnosed with Crohn's. She's been having issues for a while now, but everything moved quickly after an ultrasound a week ago. She was sent for an immediate CT scan and then to see a pediatric gastroenterologist the following day. The...