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afha · This is the Alternating Hemiplegia of Childhood Mailing list for all families affected by this disorder. (http://www.afha.org)

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Messages 943 - 972 of 10516   Oldest  |  < Older  |  Newer >  |  Newest
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943 yvonne3
yvonne3@... Send Email
Jan 4, 2002
5:23 am
Please note that my e mail address has changed to Ockman5@.... The change will take place this month. I would like to start getting my e mails at that...
944 marcia_perkins Send Email Jan 4, 2002
8:06 pm
Jennie is 14 and we are seeing some new things with her and I'm wondering if anyone else has experienced this. She has always had double vision at time but...
945 Todd Creech
runwild_30 Send Email
Jan 4, 2002
11:01 pm
Marcia, Chad is 13yrs old he also has the shaking in both legs when just sitting. Some times I will Tell him to take several deep breaths, the shaking tends to...
946 MANEEXP@... Send Email Jan 4, 2002
11:18 pm
Hi all, this is Ashley's father Dave she is 13, well because of the behavior effects of clanazpan(spelling?) we slowly took her off the med. and she is so bad...
947 Kevin Prunty
prunty58@... Send Email
Jan 4, 2002
11:22 pm
Marcia, Mary has the same thing with her leg bouncing. The neurologist said that it is an involuntary action caused by neurological damage. Usually, if we...
948 Don Kilpatrick
kilpatri@... Send Email
Jan 5, 2002
3:17 am
Marcia Our daughter, now 20, has had this tremor off and on for several years now. I think the doctor said it was called clonus. It usually happens when she...
949 Mkderks@... Send Email Jan 5, 2002
5:56 pm
I have seen this occasionally with Nick also. I also think Dr. Janousek has seen it with Nick. Nick's seems to be able make his leg do this when he flexes his...
950 Todd Creech
runwild_30 Send Email
Jan 5, 2002
8:17 pm
How slow did you go? Depending on who long she was on the drug should determine how long it would take to come completely off it. Does she have a pattern when...
951 MANEEXP@... Send Email Jan 5, 2002
8:22 pm
Hi, yes we took our time,she has no pattern but after three days she seems ot be comming around.we now look to the tenex prug and see if it helps,any thoughts ...
952 Marcia Perkins
marcia_perkins Send Email
Jan 7, 2002
3:12 pm
I brought this to the attention of Tracy at Dr. Janousek's office last Friday and am waiting to hear back from them. I'll let you know if I get any...
953 MandM421@... Send Email Jan 8, 2002
8:09 pm
Hello everyone this is Mindy Hailey's Mom...Hailey will be turning 5 in 2 weeks... Ok here is my question......we just came home from Hailey's neurologist and...
954 MandM421@... Send Email Jan 9, 2002
2:28 pm
Dave how weird we are both asking about Tenex Mindy...
955 popcornkcv@...
popcornkcv Send Email
Jan 12, 2002
12:17 am
Hello everyone...This is Karen V., Addie's mom. Does anyone's child jerk during an attack? SOmetimes Addie's eyes flutter wiht body tremors and subside...
956 MANEEXP@... Send Email Jan 12, 2002
2:18 am
OK, this sounds like you need to get as much info as u can in a short time frame. Our Ashley is now 13 . Yesterday was her 13th birthday and we are so glad...
957 Renny001@... Send Email Jan 12, 2002
3:46 am
Hi Karen Alec had the flu last January(a year ago tomorrow) he had a great deal of difficulty walking for quite some time after. His legs seemed somehow ...
958 Todd Creech
runwild_30 Send Email
Jan 12, 2002
4:11 am
KV, The turning blue, jerking from head to toes, sounds more like seizures than the ahc. Did she sleep any after the er visit. Our son has seizures also. You...
959 popcornkcv@...
popcornkcv Send Email
Jan 12, 2002
2:26 pm
Hi Kelly, I am sorry to hear Cameron may be going through the same issues. Is she having a PET at CHildren's? If there is anything I can do to help, please ...
960 Laegan@...
laegan6 Send Email
Jan 12, 2002
5:43 pm
Hi Karen, I can't really address the issues as you describe but it sounds like you got some good information from families who know. As for communication, we...
961 MandM421@... Send Email Jan 12, 2002
9:53 pm
Nobody knows anything about Haldol or Tenex ????? Mindy...
962 Laegan@...
laegan6 Send Email
Jan 12, 2002
11:15 pm
Hi Mindy, I've never heard of Tenex. Haldol was suggested to us in 1993 (I was just cleaning out files and found the information). After researching the drug,...
963 Renny001@... Send Email Jan 13, 2002
4:28 am
Hey Karen Camryn had her Pet on Monday at Childrens. It showed almost exactly the same as Alecs test did which doesn't give us a warm feeling. She is still...
964 popcornkcv@...
popcornkcv Send Email
Jan 13, 2002
2:10 pm
Hi Kelly, Please let me know if any of the testing helps with conclusions. Children's opted out of the PET testing for Addie. They were going to do this and...
965 Renny001@... Send Email Jan 15, 2002
1:11 am
Hi Karen Just got home from Childrens today. I'm not sure what the genetic and metobolic work up is. I do know it consisted of alot of blood samples taken ...
966 yvonne3
yvonne3@... Send Email
Jan 15, 2002
4:52 am
Karen, Kristen has seizures and she does the same type of things. She will have a episode where she's playing will get jerky and after resting she stops....
967 popcornkcv@...
popcornkcv Send Email
Jan 15, 2002
7:38 pm
Hi Yvonne, I think I have asked you thiese questions this past summer when we had what we thought were seizures while on vacation. THanks for getting back to...
968 Carol
sunplace95008 Send Email
Jan 15, 2002
8:00 pm
Hi Karen, We tried Keppra for Alex (4) with no side effects however it did not help to control the seizures. A good side effect of Keppra however, is it ...
969 Kevin Prunty
prunty58@... Send Email
Jan 15, 2002
8:25 pm
Karen, We recently tried my daughter Mary (age 15) on Keppra. She became very agressive with pinching and biting. They did not like it at school at all! Carol...
970 Lynda Burnham
lynda.burnham@... Send Email
Jan 16, 2002
9:18 pm
Hello. Lamactil drastically increased Leslie's seizures. Lynda...
971 Heather Gates
hossanova2000 Send Email
Jan 18, 2002
4:02 pm
Hi everyone, Our daughter, Jocelyn, receives Physical therapy once a week. We stopped traditional therapy since she receives it at preschool and we found out...
972 Heather Gates
hossanova2000 Send Email
Jan 18, 2002
4:09 pm
Hi, I'm trying to get info from everyone about what therapies have helped despite constant AHC attacks. our daughter, Jocelyn, 3 1/2 yrs is now showing more...
Messages 943 - 972 of 10516   Oldest  |  < Older  |  Newer >  |  Newest
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