I received an email today from Bryce's current neurologist, in response to the letter from Dr. van der knaap. This is what he had to say:
Hi Mrs. Clayton:Thanks for sending me the letter from Dr. Van der Knaap. She is clearly an authority on leukodystrophies, and I agree with some of the things she has said - that this is not a typical leukodystrophy. However, I think Bryce clearly deteriorated in his development, and has neurological signs of white matter disease. It may be that the primary problem is neuronal in nature, rather than being primarily a destructive process that affects the white matter. Dr. Terri Grebe (also in Genetics) is helping me with the neurogenetics clinic at CRS, and I will ask that Bryce be scheduled in that clinic for us to both review all the testing to date, and see if there are things that we should be investigating that have not been done.Vinodh Narayanan
UGH! I wish we could get this figured out!
Today I also went and made 1149 copies. This is 3 sets of Bryce's records. I will be sending them to SLC, Massachusetts, and Florida to doctors there who are willing to take a look at them.
2 comments:
how frustrating for you.
That's a lot of copies - I feel your pain!
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