Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 laurie, anna grace has been wearing afo's for a couple of years...mostly when she uses her gait trainer and then also at school (she is in kindergarten). anytime, anna grace needs to be put under, they use precautions for malignant hyperthermia. we have been lucky...she has always done well in and coming out of surgery. anna grace also has a gtube. we started down the mito path when she was one year. her neuro ordered a mri, which indicated " mito " , then we were referred to dr. cohen in cleveland. they also do the fresh biopsy, but their procedures required more muscle mass, and since anna grace was so tiny, we went to atlanta (where they use less muscle). both dr. cohen and dr. shoffner are mito specialists. i know there are others...but not sure exactly who or where. we live in maryland, so i'm not much help for texas....but i'm sure there are people on this web site who are. and yes, insurance paid for biopsy and all of her doctor appts. actually, dr. shoffners office arranged everything for us, including insurance approval. so, are all three of your children affected? i also have two boys (one is anna graces twin), but they are not affected. i'm not really sure about the regession. anna grace has been dx with leighs, which has a poor prognosis. but we feel really lucky. she is 5 years old and continues to maintain. please feel free to keep asking quesitons. i have learned so much from asking other parents about their experiences! bethany mom to brennan 8, palmer & anna grace (leighs) 5 Quote Link to comment Share on other sites More sharing options...
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