http://www.aadctalk.org/feed/? Latest topics Wed, 24 Feb 2010 08:53:56 GMT 10 http://i30.servimg.com/u/f30/11/87/19/08/re_aad14.jpg http://www.aadctalk.org/feed/? http://www.aadctalk.org/general-public-forum-f23/my-daughter-t164.htm Anonymous Hi all! My daughter is 26 and we don't know the right diagnose till now ,we live in Italy.She was diagnosed with myasthenia becouse she is very weak sometimes,and she has intermittent ptosi.She was diagnosed with paroxysmal dystonia too ,she has very low BP .Every afternoon she has oculogyric crisis of about 2 hours,her eyes are completely out of control,they roll back and you can see only white sclera ,or they move like opsoclonus myoclonus,she has alternating strabismus sometimes like ... General (public forum) Wed, 24 Feb 2010 08:53:56 GMT http://www.aadctalk.org/general-public-forum-f23/my-daughter-t164.htm#748 http://www.aadctalk.org/general-public-forum-f23/my-daughter-t164.htm http://www.aadctalk.org/general-public-forum-f23/my-niece-has-aromatic-l-amino-acid-decarboxylase-deficiency-t129.htm Anonymous [b] Marlie Craw was born on March 30, 2003 in Hampstead, North Carolina. She was a premature baby, struggling everyday with a disease that no one could diagnose. After many months, her mother, Andrea Karns decided that if the doctors were not able to figure out what was wrong with Marlie, she was going to try her best to. So with all of Andrea’s hard work from researching Marlie’s symptoms on the internet and medical encyclopedias, she finally believed she had diagnosed her daughter herself. ... General (public forum) Mon, 24 Nov 2008 18:55:27 GMT http://www.aadctalk.org/general-public-forum-f23/my-niece-has-aromatic-l-amino-acid-decarboxylase-deficiency-t129.htm#573 http://www.aadctalk.org/general-public-forum-f23/my-niece-has-aromatic-l-amino-acid-decarboxylase-deficiency-t129.htm http://www.aadctalk.org/general-public-forum-f23/hypoglycemia-t148.htm rileykat Anyone have any info on our kiddos having hypoglycemia problems? Riley is having a rough spell.....I checked her blood sugar for the first time today and it was 66. This was after she ate lunch but then vomited it up. She has started losing weight and really doesn't seem to have an appetite. I thought it was from a new seizure med but she hasn't taken it for 3 weeks and was only on it for 2 weeks. She got better after I took her off of it but now is doing the same thing as before. She sleeps ... General (public forum) Sun, 17 May 2009 21:16:33 GMT http://www.aadctalk.org/general-public-forum-f23/hypoglycemia-t148.htm#667 http://www.aadctalk.org/general-public-forum-f23/hypoglycemia-t148.htm http://www.aadctalk.org/general-public-forum-f23/sofia-t145.htm Morabito I am the father of Sofia Morabito. Sorry for my English not perfect.
Sofia has 13 years. We are worried because we think that in Italy is not well followed.
Sofia is a very cheerful girl.
I will make you have some photography.
hello
John]]> General (public forum) Thu, 26 Mar 2009 15:26:43 GMT http://www.aadctalk.org/general-public-forum-f23/sofia-t145.htm#655 http://www.aadctalk.org/general-public-forum-f23/sofia-t145.htm http://www.aadctalk.org/general-public-forum-f23/see-jakes-tv-documentary-public-forum-t20.htm LisaF You may like to see Jake's story which was shown on UK Television a couple of years ago. The video is in two parts and in total about 17 minutes long. The story explains how Jake's quality of life improved as a result of being correctly diagnosed with AADC, sadly this is not the case for most children living with this devastating brain disease. You can post your comments here or you can get involved by visiting our 'fundraising forums' and let us know how you can help raise the much needed ... General (public forum) Fri, 25 Jan 2008 08:07:07 GMT http://www.aadctalk.org/general-public-forum-f23/see-jakes-tv-documentary-public-forum-t20.htm#35 http://www.aadctalk.org/general-public-forum-f23/see-jakes-tv-documentary-public-forum-t20.htm http://www.aadctalk.org/general-public-forum-f23/a-little-boy-looses-his-battle-with-aadc-public-forum-t21.htm LisaF It is with deep regret and a heavy heart that we report the sad loss of another child to AADC. He was a 4 year old little boy from Taiwan who sadly and unexpectedly passed away in his sleep. This only highlights the desperate situation of some of our children and the urgency needed for AADC Research. We are truly sorry we weren't able to find any answers in time to save him. Our sincere condolences go out to his family and we wish them all the very best for the future. Lisa Flint The ... General (public forum) Fri, 25 Jan 2008 08:13:26 GMT http://www.aadctalk.org/general-public-forum-f23/a-little-boy-looses-his-battle-with-aadc-public-forum-t21.htm#36 http://www.aadctalk.org/general-public-forum-f23/a-little-boy-looses-his-battle-with-aadc-public-forum-t21.htm