Hi Paige, Thanks for ur questions. I'm not sure when I was diagnosed, but I have had quite a few other labels and possible diagnoses - I guess in the 80's...
Hi Hazlin, Yes I did have some speech therapy - both as a little child and when about 10 years. Orginally, I had lost all use of speech - so I had to literally...
Hello everyone, I hope all of you had a fun Halloween. I just wanted to let you know I've updated Gayle's pictures. Also, I have some good news-Gayle started...
THanks for thinking of us Glenda. However, our new neurologist stopped the surgery and has been working her up for more metabolic issues. He was concerned...
Amy, great news! Love the photos of Gayle, too. Heather, mom of Jocelyn ... From: Amy & Gayle To: afha@yahoogroups.com Sent: Wednesday, November 01, 2006 7:24...
Hi to everyone, this is Dave Ashleys dad,she just had a spell of rapid heart rate to 130 and was looked at by the Dr's after several hrs she is down to 116...
MANEEXP@...
Nov 1, 2006 6:10 pm
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My daughter has had heart rates that high but she is usually in what we consider to be a seizure. I don't if other's exp elevated heart rates with AHC...
Hello, Craig, the father of Christa with ahc (30 years) here. I've been on the mailing list for a couple years, but there are times I don't read everything,...
Hi, Craig Thanks for emailing us about Christa. It sounds like she is doing well. I was particularly interested in your comments about her wheelchair. We...
Hello again, Joel (4) has had many days in a row now with severe curling under of his toes/top half of foot. It seems very very painful and he can't walk....
Kiley (5) has had stiffening of her left foot (her episodes are worse on the left than the right). We have seen that it is in conjunction with an episode, not...
Brenda, Sorry to hear about Joel. Jake, now 15, was about the same age when his dystonia became bad, his would occur mainly in his right or left leg and the...
Greetings Brenda, I hope this message finds Joel feeling better. Ian (3.5) had occasional, mild dystonia prior to taking Flunarizine. He now takes Flunarizine...
My son Levi who is almost five is still in diapers. He is wearing the "Luv's" size 6 brand and they are too small. Any ideas as to where we go from here?...
Hi Rachel, Mary's 20 now, but she never was toilet trained. When she out grew diapers we started getting them from HDIS. You can look at hdis.com They have all...
Hi Rachel, We’ve been using Tena Diapers for Alex and he’s 9. He still can wet through, but at least they fit him. In California Medi-Cal pays for them. ...
Hi, Rachel Alaina is pretty much potty trained, but, I still use Pull-ups Good Nites Underpants when she is in an episode. On episode nights, I put her to bed...
Has anyone successfully toilet trained their child after 6/7yrs of age? Addie seems to be able to do ok at school (mornings only) but not at home. She has...
We have sucessfully toilet trained David by about age 8, and he has had to retrain 3 times due to severee episodes. We put him on a toileting schedule, am,...
HI Brenda My son Ethan (31/2) seems to have started with a similar problem to Joel. I wrote a few weeks ago, that he was in an extended episode that seemed to...
Claire we experienced similar things with David after several of his more severe episodes. He had alot of the dystonia during the episode and then when it...
This is the website I've been looking at for a dog for Levi. They seem REALLY good. I've just about got my paper work done. Just need one more reference...
This is from the Keppra drug site and their sponsoring of seizure dogs for epileptics, peoply with physical disabilities and others. Hope this helps.... ...
Hello everyone! Last days we are having technicals problems with the AESHA webpage (Spanish association) for reasons beyond our control. We apologize for the...
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