... Dear Clyde; Thank you for all that you have shared with me.
I am deeply saddened by the loss of your daughter Heather. Please accept my heartfelt condolences, she will not be forgotten. Only faith in God will fill the void.
Sincerely, Maryann C. (8 replies)
... Hi BriMom,
It has been a while since I was on HB. I got on yesterday and responded to a pm from trailrunner. The information trailrunner requests cannot be posted due to board's requirements for length of posts. Hopefully, she/he will get in touch, again.
BriMom, our sweet girl passed away in January. She was just too frail by the time we got a diagnosis (in June 2013). ... (8 replies)
... I was wondering if anyone with a child with Down Syndrome who has been diagnosed with Autoimmune Encephalitis has tried fasting or ketogenic type diet? ... (0 replies)
... I would like to add something. We were taking our daughter to the Hospital at the University of Penn. we were told to take her over to the Children's Hospial of Philadelphia and talk to a neurogeneticist. She has been given steroids treatments but she is also receiving a monthly dose of intravenous immunoglobulin and an extremely small dose of Prozac. She is improving... (8 replies)
... Anyone else out there have a young adult with DS also having been diagnosed with HE? We are almost two weeks into treatment. Treatment initially was 1,000mg IV steroids for 5 days and now sent home on 60mg daily oral. She started symptoms in October of 2014 with fatigue, lack of speech, extreme insomnia, frothy saliva. Then in December of 2014 she had a severe headache,... (8 replies)
... Anyone else out there have a young adult with DS also having been diagnosed with HE? We are almost two weeks into treatment. Treatment initially was 1,000mg IV steroids for 5 days and now sent home on 60mg daily oral. She started symptoms in October of 2014 with fatigue, lack of speech, extreme insomnia, frothy saliva. Then in December of 2014 she had a severe headache,... (0 replies)
... Bless you for trying to help him and his parents. I know that caring for a down syndrome adult is challenging as my 22 year old son has downs and is autistic too. You are a blessing to his parents as I know they must be exhausted. ... (3 replies)
... I am currently living with a Downs Syndrome adult in his late 30s. I am his cousin. His parents are in their 70s and struggling to know how to manage his constant refrain that he is sad. ... (3 replies)
... There is a book, "Mental Wellness in Adults With Down Syndrome," by Dr. Chicoine. Dr. Chicoine began and still runs the oldest adult down syndrome health clinic in the U.S., and possibly the world. Unfortunately it is just outside of Chicago, and due to overwhelmig response, they only see residents of Ill.. ... (12 replies)
... Hello, My daughter is 47 and has Down syndrome. (12 replies)
... 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)
... 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. ... (8 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)
... 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. ... (8 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... (8 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)