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Down Syndrome Board Index
Pages: 1 2 3 4 5 6 7 8 9 10 11 ... 41Showing 1 - 20 of 814 for syndrome. (0.078 seconds)


... 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. ... (15 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... (15 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... (15 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... (15 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... (15 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... (15 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... (15 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. ... (15 replies)
... I was amazed to read a post and I see it was from 2010 on down syndrome and H.E. ... (15 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... (15 replies)
... So happy that you were able to make contact with Mobley's office. Near the other side of the continent, my daughter is too fragile to travel to Cal., or I would try to have her in Mobley's care in a heartbeat. She was taking a med that she should never have been taking on a daily basis, and only because I was fortunate enough to hear him speak at a conference in Nashville, my... (4 replies)
... Thank you Clyde! I just made an appointment. We are having her evaluated at UC Irvine tomorrow, at another well recommended center. And then there is another place we found through the Harbor Regional Center. But Dr. Mobley is coming back from Denmark on Friday, and his secretary said she would make an appointment for us after consulting with him. Thank you so much!... (4 replies)
... Prior to learning that what she has is an auto-immune disorder, I often wished that our daughter could have MRI, unfortunately, she has the pacemaker, as well as the metal clamps that were used in 96 to close her sternum after she had open-heart surgery. So, no MRI's for her. Trying to get appropriate treatment always seems so slow. It is confusing, understanding about the... (15 replies)
... Hello I have read a little about GABA and Trisomy 21, and about the testing of a new drug that is in trial and accepting applicants for the study. I also have noticed how a lot of tranquilizer meds increase GABA and I have tried to see which we're GABA Antagonists. And which were agonist but it is very difficult to understand and especially when my daughter has been... (15 replies)
... Hello I have read a little about GABA and Trisomy 21, and about the testing of a new drug that is in trial and accepting applicants for the study. I also have noticed how a lot of tranquilizer meds increase GABA and I have tried to see which we're GABA Antagonists. And which were agonist but it is very difficult to understand and especially when my daughter has been... (15 replies)
... Hi Yes I am going to have to try the Kennedy Krieger institute. I am not getting anywhere here in NJ. It's impossible to even get the tests done to even check these things out here. And in the meantime she's not getting treated and getting worse. My daughter also had open heart surgery as a baby. She had a follow up appointment a few months ago. I didn't know about the... (15 replies)
... Hi. Thank you for explaining this to me. It is very valuable information and so important to us. Can't thank you enough! My daughter never had any neurological testing done at all except for a cat scan in the ER when this initially occurred last September. The ER said she was fine medically and released her and since she is developmentally disabled, the state of NJ sent an APN... (15 replies)


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

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