Alexander's Disease This article submitted by T. N. on 7/2/96.
Author's Email: tnance@genie.esu10.k12.ne.us
Our daughter was diagnosed with hydrocephalus at 10 months of age. She was immediately shunted and within weeks we saw encouraging signs. She was able to hold her bottle by herself somewhat,sit up by herself, etc. A few months later, she started to develop seizures and from then on we had a series of hospital stays. She was delayed quite a bit to the point that we had to have a G tube and fundal done when she was 3 years old.(She had a difficult time swallowing) As some point during this time frame, she had an MRI. We did not actually see the films but were told by a neurologist that the tests were not conclusive about our daugther's disability. We went to Mayo and basically were told the same thing...something is going on but no diagnosis. We decided to just enjoy our beautiful little girl and take things one day at a time. We had some short hospital stays but for the next 2 -3 years we had time to enjoy our daughter. She was not able to walk, talk but was very aware of the world around her. She taught us to look at life in a totally different way. Our pediatrician scheduled us to see a genetic doctor just to visit about our undiagnosed problem. He took those MRI films from a few years previous and compared them to recent ones, and said "Yes, I would agree with the diagnosis of leukodystrophy." I had never heard that term before. | |
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