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Old 07-11-2014, 08:26 PM   #2
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Join Date: Jul 2014
Posts: 19
Clyde1 HB UserClyde1 HB User
Re: Down Syndrome and H.E. (Hashimoto's Encephalopathy)

Have your daughter's anti-thyroid peroxidase antibodies levels been tested? That is usually the first test that is done, and then the enolase antibodies. In HE, these antibodies are elevated. To confirm, a lumbar puncture to test for elevated protein is sometimes done. My daughter was tested last year, and her's were both elevated. Three drs., primary care, rheumatologist, and a neuro, agreed that her tests along with her myoclonus, right side partial paralysis, etc..were clinical symptoms of HE, and that a lumbar puncture should be done to confirm HE. Unfortunately, the head of the neurology dept. at the major medical center where we took her hoping to receive treatment, would not allow the dr., a neuro, who is interested in HE to treat her, and who had been recommended to us by a top neurologist who specializes in epilepsy (which our daughter does not have). She developed myoclonus due to the auto-immune disorder. The head dr. did not, obviously, want this old girl with DS in his clinic. (She is 47.)He could not say that, of course, but what he did was pull the neurologist the neuro who has experience with HE, and who had already expressed that he wanted to treat her, off her case, insert himself, and then give her the bum's rush. He actually said: "She has auto-immune disorder; I don't know what. There is no need to bring her back, unless the primary insists." I could not get her away from him fast enough. Any doctor who so obviously does not want to treat a patient with an illness in his specialty can do more harm than good. It is difficult to find treatment for HE in general, and when it is any auto-immune illness in a person with DS, it is practically impossible. There is a lot of information on the NIH website on HE. ( My username is Clyde1, which suggests a man. I am a mother, whose name was already in use, so I went with a male relative's name.)Sorry this is long. Let's stay in touch.

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