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  • Down Syndrome and H.E. (Hashimoto's Encephalopathy)

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    Old 08-29-2014, 09:16 PM   #16
    Clyde1
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    Re: Down Syndrome and H.E. (Hashimoto's Encephalopathy)

    It has been our experience that Drs. cannot get past the DS, cannot understand that persons with DS can have the exact same illnesses that persons have in the general population, even their primary care doctors. For 5 years, I kept hoping that our daughter's primary care would come up with something. Not! Every test, every 'specialist' we saw was at our request, even the atp test that led to the diagnosis. I believe that most people perceive their primary care drs. to be a team leader, to know who to refer their patients to when an out of the ordinary illness strikes them. Sadly, too few primary care Drs. view their roll in this way. They really should be, though. Thanks for keeping me updated. I pray that your daughter will benefit from going to upenn. Look forward to next update. Thanks

     
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    Old 09-22-2014, 08:34 AM   #17
    BriMom
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    Re: Down Syndrome and H.E. (Hashimoto's Encephalopathy)

    Hello! Just reporting back that our daughter had several tests done at the Hospital at University of Pennsylvania and we are waiting on results. She also had treatment for auto-immune disease. Seems o be doing better which is a step in the right direction. hanks for your information that you sent to me over the past several months. It was very informative. Much appreciated.
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    Old 10-07-2014, 07:01 PM   #18
    Clyde1
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    Re: Down Syndrome and H.E. (Hashimoto's Encephalopathy)

    Quote:
    Originally Posted by BriMom View Post
    Hello! Just reporting back that our daughter had several tests done at the Hospital at University of Pennsylvania and we are waiting on results. She also had treatment for auto-immune disease. Seems o be doing better which is a step in the right direction. hanks for your information that you sent to me over the past several months. It was very informative. Much appreciated.
    Thank you so much for updating on your daughter's experience at University of Penn.. If you don't mind sharing, what was the treatment for auto-immune disease? I hope that what I wrote was of some help. I have come to believe that we, parents, learn more from one another's experiences than from the medical profession. I believe that Doctors would like to help, but individually they are limited due to not having enough experience with persons with DS. We are all still groping in the dark because it has been only in recent years that the DS population has begun to live long enough to provide a history of ailments that they develop as they age. This particular auto-immune disorder strikes children also, but does appear from what I have read to impact the DS population most often from their twenties upward. Please stay in touch. I just this evening saw this post from you. The notices are not showing up in my e-mail as they did earlier. All best wishes and prayers for your daughter.

     
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    Old 10-15-2014, 03:48 PM   #19
    ana2001
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    Re: Down Syndrome and H.E. (Hashimoto's Encephalopathy)

    Hello I am new to the discussion thread and I am in need of seeking help and advice from mothers with Down Syndrome Children diagnosed with Hashimoto Encephalitis. My sister who is 13 years old was diagnosed with Hashimoto Encephalitis 7 months ago. She suffers mostly with hallucinations due to this illness. It has been a very rough, challenging, and heartbroken process in finding the right treatment for. Her neurologist and rheumatologist have given her several treatments for example: intravenous steroids and IVIG every three weeks in which we see no improvements, she has also received a dose of Rituximab which is an immunosuppressant and as well see very minimal progress with her symptoms due to Hashimoto. I would appreciate a response in how your child is being treated and as well their progress. I am also seeking advice in what hospital or doctor have they treated or have experience with Hashimoto Encephalitis in DS children. Her developmental pediatrician in the Down Syndrome Clinic here at Houston basically told us that my sister is the only child with DS diagnosed with Hashimoto Encephalitis here at Houston. I would appreciate a response and you are all in my prayers.

     
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    Old 10-16-2014, 03:33 PM   #20
    Clyde1
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    Re: Down Syndrome and H.E. (Hashimoto's Encephalopathy)

    Hashimoto's Encephalopathy is underdiagnosed in the general and in the Down syndrome population. It is only recently that it has been sanctioned an actual disorder by the National Institute of Health (NIH). The treatments you have listed which have been administered to your child with DS are all that I have knowledge of being given to any HE patient. There may be more, but I have not heard of them. Have you asked her neurologist and rheum. how long before good results are seen? I am not surprised that your child is the only person with DS to have been diagnosed with HE, even in a large metropolitan area such as Houston. To begin with, it is underdiagnosed due simply to the medical profession not recognizing it. If the word fortunate can be applied here, you are fortunate that you have a diagnosis. Myoclonus, right side partial paralysis, confusion, memory issues, etc.. The list of symptoms is long and not everyone has the exact same symptoms. My daughter had symptoms for 5 years before we got even a half-way diagnosis, then only that she has an auto-immune disorder. If you have read the other posts between me and Bri-Mom then you know what I was told by the head of the neurology dept. at a major medical center concerning treatment for my child. They simply did not want to mess with her, I believe because at age 47, she is considered 'an old girl with DS." Sad, but true. My belief is that they just do not know what to do for our children. I wish I could tell you something that would be helpful, but it sounds like your child is receiving about as good as there is to get for this monster disorder. Please continue to post reports of your child's treatment, and, hopefully, progress toward healing.

     
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