Guest guest Posted March 15, 2004 Report Share Posted March 15, 2004 hi. my daughter who turned 16 mos old yesterday, was given a diagnosis of mitochondrial disease. she had a muscle biopsy 7 weeks ago while she was in the hospital for seizures. dr shoffner read the muscle biopsy. i am very very new to all of this stuff, the computer, this disease, what to expect. i would really like some input from other people. we live close to knoxville,tn and i dont know anyone with this disease or heard of it. karlee beth has lost her vision in the last couple of days. we go to the hospital at 645am for egd and ph probe to determine what kind of feeding tube she needs. her neuro started her on carnitor today. she weighs 19lbs and 30inches long, she has great days where she will drink 21-240z of pediasure a day then the next day she drinks 5-8oz. she has never ever cried to nurse or drink a bottle. she is not sitting, crawling or talking and still takes a bottle from me. she is beautiful and such an angel. the neuro told me he was so surprised of how happy she is. i would appreciatte any comments from anyone. i have a wonderful husband a 2 other beautiful children ages 8 and 3. thanks so much!! this has been a very very sad day for us! 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.