I think it was in Mylynda's reply to a specific email from me about making arrangements for a vacation to Utah. I had told her that I might be able to ...
KathHurl@...
Jan 2, 2003 5:57 pm
2335
Hi, sorry for the confusion, I also asked Mylynda about exchanging a time share week that we have. I meant to delete that part of her response. Joan ... ...
SJ Law
6laws@...
Jan 2, 2003 7:28 pm
2336
Hi everyone, I've been off the e-mail for a number of months. Ryan had his first grand mall seizure in October. Never had one before, he's 22. This has...
Hi Hannah, My 3yr old, Addie, has seizures. Currently I would say Addie deals more with seizures than with AHC. They can last for hours before medicine works...
Hi Karen, thanks for replying. What you describe sounds like Ryan's episodes related to Alternating Hemiplegia Syndrome, minus the breathing difficulty. Also...
Hi everyone, I'm trying to get back into the group where letters from everyone are read. Is this it? Hannah [Non-text portions of this message have been...
Hannah, Yes, this is the bulletin board where everyone signed up sees what you send and can respond. Welcome back. It has been pretty quiet for a few months...
Thanks Marcia for letting me know I'm in the right place. It used to be that I would log on and see tons of letters. I guess everyone is busy. thanks again....
Hi everyone, We have recently moved and need to put in a bathtub for Addie. She get's jittery, scared, and sometimes seizes with showers particularly if she...
sorry, I don't know anything about these bathtubs, but am I ever glad to hear from someone in the group. I've been looking every day, and just 5 minutes ago...
HI this is dave ashleys dad she is 14 now,she has not got her period yet but soon im sure,does anyone have information about the spells and behavior at this...
MANEEXP@...
Feb 8, 2003 12:11 am
2345
Hi, my Ashley 14 yrs is OK with a very warn room and shower, but a quick bath in very warm water is OK, if she gets cold its not good. All the kinds need to be...
MANEEXP@...
Feb 8, 2003 12:16 am
2346
Hi Hannah, It has been exceptionally quiet lately. I was just commenting on the same thing. Has anyone heard from the research group regarding the publishing...
thanks David, We too find Addie's trigger to be that point were she moves out of the bath and is exposed to colder temperature. She still loves water just...
Hi Karen, We've put a portable heater in the bathroom so when Alex gets out of the bath its not a shock to his system. We also find an extended period in the ...
Hi everyone, This is Karen V, mom to Addie Rose, 3.5yrs. Addie has had a very tough last 4 weeks. She came down with cold that worked into bronchitis then...
Although every child is different, when Jennie, now 15 got her first period at age 14 we saw no real changes in her disorder. We see some of the other typical...
Marica,thanks for the info,I was just curious if any changes were normal or not,but its good tat things are as usual for you,stay well --Dave and Ashley ...
MANEEXP@...
Feb 8, 2003 3:28 pm
2352
Hi Dave, Laura is about to turn 16 and has been getting her periods for four years now. The only problem she has is an outbreak of pimples... and I mean,...
Hi -- Abbie got her period last summer just after she turned 13. Nothing has changed with regard to her AHC -- as a matter of fact, she's been doing great and...
KathHurl@...
Feb 9, 2003 4:53 pm
2354
Sorry to hear shes having such a rough time. What type of seizures does she have again? When Chad get's sick he doesn't run a fever either but gets the shakes...
What is Gabitrol? I haven't heard of it. We are trying to get off Lamictal...seems like an almost impossible task. Everytime she gets ill or has a seizure,...
Hi, for those who replied to my question about girls 14 I thank you.Ive been working with her in all area of being comfortable about this time for her.Your...
MANEEXP@...
Feb 12, 2003 3:28 pm
2358
Did anyone respond to Karen V ..........."Has anyone heard from the research group regarding the publishing of their AHC treatment guidelines?" Does anyone...
cbarnett@...
Feb 12, 2003 4:09 pm
2359
Dear Families and Friends, The International Meeting will take place July 26-27, 2003 in Salt Lake City, Utah. We will be sending a letter in the next few...
HI, It has been a litle quiet around here lately. I was hoping to get some input from a few of you with older children. Alaina is turning three in April and I...
Hi -- I also wanted to mention that prior to when Abbie turned age 3 I was fortunate to have found a Day Care Center whose owner/operator was the mother of a...
KathHurl@...
Feb 18, 2003 9:52 pm
2362
I'm not sure about other states, but I know that in Massachusetts the public school system is required to provide all required therapies beginning at age 3....
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