Sheila
I have a child with a progressed form of Adrenoleukodystrophy. He had a bone marrow transplant in Dec 1997 and stablized about 14 months later. His is bed ridden now and can;t see or talk. He has develped scoleosis, I guess because he has no muscle control and is only confined to a wheelchair and bed. The orthopedic doctor I took him to is suggesting surgery by inserting metal rods. John cannot undergo such a surgery in his condition plus each surgery he has had since his diagnosis has only proven to progress his neurological condition. He has already been through so much pain and suffering I just couldn't put him through anything like that again. IF anyone has any good suggestions or has had any experience with this I would be grateful to hear from you. Thanks!