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Down Syndrome Board Index
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... Hashimoto's Encephalopathy is underdiagnosed in the general and in the Down syndrome population. ... (19 replies)
... 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. ... (19 replies)
... Hello I have a 13 year old sister diagnosed 7 months ago with Hashimoto Encephalitis and who also has DS. I am also seeking advice from mothers or relatives that have children diagnosed with HE. I wanted to know what type of treatments are most common or that have helped children with DS. My sister has has been through several treatments and none has worked how we though it... (1 replies)

... 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... (19 replies)
... Hi all, I have a 13 (soon to be 14) year old daughter with down syndrome. She got her period when she was 11, I was taken by total surprise and it took her a long time to get used to it, and the care of it has been very hard. My problem is that she has such a short cycle every 20 to22 days, so it seems as if we never get a break and it's becoming increasingly hard to manage it... (0 replies)
... n syndrome. She has very similar symptoms like you are writing about. I too have an open thread "HASHIMOTO'S ENCEPHALITIS" Clyde, a mom with a daughter with Down syndrome is very knowledgeable and has been a godsend to us. ... (4 replies)
... ly. It's now the end of Sugust and no testing as of yet but I am keeping my fingers crossed for tomorrow morning. I know it has to do with the fact that the Down Syndrome marks her. its a calling card that leads to immediate profiles that shadow judgement even at UPenn. I will let you know. ... (19 replies)
... Hi BriMom, you are taking your daughter to the very best Neurology Clinic to learn if what she has is Hashimotos Enscephalopathy. Overall, it took 5 years for us to learn that she has HE. The problem we ran into and which all parents of persons with DS are familiar with is that when something unusual occurs with our children's health it is always "it's his/her Down... (19 replies)
... 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. (19 replies)
... 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... (19 replies)
... Oh my! I am sorry that you are having so many problems getting your daughter's lumbar puncture. Have you already had an appt. at Penn? I am looking forward to hearing what you learn there. Everything that I have read about Penn has been positive. Did your daughter's primary care doctor order the lumbar punctures, or did the drs. at Penn ask for them? Usually, when... (19 replies)
... Thank you. I will look for the book, it sounds interesting. I have nothing nee i can tell you. Unfortunately I am having extreme difficulty getting the CSF lumbar puncture appointment set up at the hospital at the University of Penn. Last week the resident was unable to get the fluid because she had spinal surgery and I think the scarring and metal rods got in the way for him... (19 replies)
... BriMom: Did you learn anything about your daughter's symptoms at Penn? The good news is that Penn has actually started an auto-immune-specific clinic. I recommend a book that has patient stories about HE: "Understanding Hashimotos Encephalopathy." This book was written by HE patients. Staight from the horses mouths, so to speak, it is a wonderfully informative book. Some... (19 replies)
... Thanks Clyde1 for your post last month. I wasn' able to get her to Kennedy Krieger becuase of age restrictions but I did get her an appointment at the University of Pennsyvania Neurology clinic and we have scheduled some ess. Everything takes so long and I'm seriously concerned about her condition. I'm hoping and praying we can ge some help at UPenn for her. How long overall... (19 replies)
... I don't know how close you are to San Diego. What I do know is that the top doc in all matters Down syndrome in the world is located in San Diego. His name is Dr. William Mobley at UCSD. ... (4 replies)
... Great that they did an Echo; that is how they found the Sub-aortic stenosis in my daughter. So it appears that you can check that off your 'worry list.' I would hope that you will follow up on the thyroid antibodies tests. Has your daughter had EEG? How is your daughter's balance? Does she have any involuntary movement, i.e. Jerks or seizures? How is her speech, as compared to... (19 replies)
... I am the adopted father of a 28 year old adult daughter with Down Syndrome. Her name is Corinne. About three years ago, my wife and I had to move away from our home in Orange County. At that time, had you asked me about Corinne, I would have told you she was about the happiest little thing I had ever met, without a care in the world. Almost as soon as we arrived in... (4 replies)
... of the medical profession sees is their Down syndrome and then it is so convenient to blame their DS for everything, instead of trying to learn what is wrong with them. ... (19 replies)
... I was amazed to read a post and I see it was from 2010 on down syndrome and H.E. ... (19 replies)
... My older sister has Down Syndrome. She is 38, and is on citalopram (antidepressant), abilify, and lamictal. She also was recently diagnosed with hypothyroidism. I grew up with her so I can give you the sibling's point of view. :) (3 replies)

Associated Tags: autism, behavior issues, down syndrome, risperdal

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