Hi Mom with Mito Child I&III

[Guest guest]

HI i My little girl has i & 3 and is having dysmotility. she is

taking zelnorm and we are getting ready to go to ohio to see dr.

Khaul. any advise?

[Guest guest]

Hi,

My son, Asher, 4 years old has Complex III and partial complex I defect. He has severe GI dysmotility and is fed through a gtube b/c he can tolerate feedings through that without becoming too distended, but regardless he has to have suppositories/enemas to have a bm. Asher is having a cecostomy tube (placed to flush out his intestines each day) or colostomy (the docs won't know until they get in there) next week in Boston. The best thing I've done is find a ped GI doc who specializes in dysmotility - they can do the tests and find out what's going on with your child. From what I know there are only 3 centers in the country that do this type of testing - Boston, Kansas City, and I can't remember the other one. We live in Florida and fly to Boston for Asher's mito doc and another ped GI dysmotility doc.

Does your child have any other symptoms? What have you used so far that has worked?

Anne R

[Guest guest]

My daughter has II/III and has terrible dysmotility and has to get

IV neostigmine to clean out but what has helped is zelnorm and

magnesium.

best of luck