myopathia viseceralis

I have a little boy old 6 months and he has been operated 4 times after that the doctors gaved us a definitiv diagnosis that is myopathia visceralis .He haven got a colon ascendens a part of ileum and valvula bauchini .Becouse this is not known in BIH can you tel us were can we go to help our boy in europe . i becouse the history of all situacion is not complete infor me wath do you need to give me answer.olso my boy need a intestinal manometry . please answer me  becouce we dont know wath to do P L E A S E HELP

[Kevin Pho, MD]

Visceral myopathy is a type of smooth muscle disorder that can cause chronic intestinal pseudo-obstruction. In other words, because the smooth muscle lining the small and large intestinal wall is damaged, food travels slowly down the intestinal tract and causes symptoms. These symptoms mimic an obstruction or blockage even though a mechanical obstruction is not present.

Reflux, difficulty swallowing, abdominal fullness and bloating, nausea, vomiting, constipation, diarrhea, abdominal pain and weight loss may occur.

Sometimes a full thickness biopsy of the intestine must be performed to confirm the diagnosis. This may require surgical exploration. Some centers will perform small intestinal manometry (pressure studies) to document poor intestinal propulsion of contents. A family history is present in up to 30% of patients with chronic intestinal pseudo-obstruction.

Unfortunately, I am not familiar with which places in Europe would be the best place to go for this.  I would suggest a major academic medical center (i.e. hospital affiliated with a university) for further evaluation and treatment.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.