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HELP..... I went to two of the best GI hospitals in the world this past week. Neither doctor can definitely figure out what's going on with my son. Hypersensitive nerves in small bowels was one theory..... mild crohns / post infectious ibs another theory. We are taking him off...

More mouth sores today on lips... visible on the outside. Heading to Boston children's hospital on 8/22 as my son's pains continue. Sad situation....

The new drug mix (Entocort and pentessa) is not working. Just bad side effects. We are getting desperate. Not sure where to turn next....

Docs still aren't convinced he has crohns. Amazing.....

Thx. I am asking my second opinion doc at Boston children's hospital for his views. My son has been rolled up in a ball for 5 months.... I'd rather he be admitted to hospital where he can receive pain meds along with treatment. I

Thank you all. I mean it. Entocort has not helped. Doc is switching to Pentasa 500 mgs for 4 weeks. My poor son. So we have now tried two drugs commonly used to treat Crohns yet docs have not labeled his condition. Why not? Has anyone used Pentasa? Thx!!!!

In doc's pill cam report.... she stated rare ulcers in small bowel not suggestive of crohns. Yet shes treating with a med used for crohns. Entocort is not working.

Thank you. I cant understand why three doctors at three top notch hospitals cant put a label on my sons illness. More importantly, why cant they treat him. Its been 5 months now. My son's symptoms are worse at night when he lays down to sleep. He was up til 230am... crying about...

OK... I will post pics in a few mins. My son is on Entocort 9 mg in the morning. He's experiencing all the side effects....... cramps in legs, eating like a wild man, hot flashes, and reflux. Can any one offer help / advice how to minimize side effects? We're making him drink plenty...

Is ok to post pill cam images ? I would like to hear forums thoughts / views?

Thank you all.... I havent even thought about visiting a rheumie... I will look into this tomorrow. Thx. Last question..... the pill cam showed very small ulcers ...very small and very few.... in small bowels. Do crohns ulcers start small and get bigger / deeper? Do they go...

Thx. I will hold off for now and to see how Entocort works.

Any thoughts on the Prometheus Test to diagnose Crohns? Their lab is in San Diego. Has anyone tried their services?

Sorry for not replying sooner... I've been visting GI doctors in New York City and Boston. My son had the pill camera endoscopy... basically swallowed a pill sized camera which took 50,000 pictures as it traveled through his GI tract. The one thing this procedure showed that was not seen...

My boy is in the OR. Doc came out and said he has NO hernia....... said his omentum is attached to abdominal wall. Has anyone ever heard of this? He took appendix out...even though it looked normal. Help ...thoughts? Anyone ever hear of this?

Mehita: Funny... my kid often would go on prednisone for asthma / croup. Wonder if it held Crohns intact? We are all at a loss.. we are all nervous wrecks........I don't expect any discoveries tomorrow. Just more of the same......... Thanks for your thoughts / response. Let's...

Thx. RonRoush. Thanks my STRONG view. But... if doc comes out during procedure and say.. I think we should remove cause there's inflammation or near the pain area.. I may loose the argument with my wife and doc. We'll see. Thank you for sharing your thoughts and concern. Have a...

Thank you all for sharing your thoughts, stories and concern. Tomorrow we'll get a closer look at my boy's intestines as he's having his retrosternal omentem hernia repaired. If the doc thinks the appendix should come or doesn't look right... I'll let him. Question: How long do...

Dusty.. Thank you so much for sharing your experiences with me. My son has asthma.. so does my daughter... so does my mother. Not me. Labs: blood tests all normal..... stool test (including fecal calprotectin) normal. MRI with contrast.. normal.....CT Scan normal...x-rays (many)...

Funny you mention that......... they want to repair his hernia (retrosternal / behind seventh rib) and remove his appendix (which is fine). I really don't want them to remove his appendix. No reason to.