Guest guest Posted November 27, 1999 Report Share Posted November 27, 1999 Sue, I forgot our most recent thing we are trying which is an anti seizure drug called neurontin. In this case it is not used for seizures but for the pain that can occur with these GI issues. My son is on a very small dose of 100 mg 2x/day. (This is my son that is about 19 kg.). But the doctor says that we can titrate up to as much as 1000 mg./day for his weight. he also has seizures and we continue to have him on tegretol for that so this is in addition and not used to control seizures. for whatever reason it is one of those drugs that seems to help with pain - migraines, GI, neuropathic, etc. This was started by our neurologist and our GI doctor did support it. At a recent visit to an out of town Mito specialist he concurred with using this so I don't think it is too out on left field. Anne - mom to Brittany, 12, Zachary, 7, Abby, 6, and , 30 months! complex I and IV Mito cytopathy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.