Hi, this is Ashley's dad Dave and she is 15 now a growing everyday. I read all of the notes each of u write and our worries are all common between us. Each ...
MANEEXP@...
Aug 2, 2004 4:35 am
3267
Dear Dave, Marie and Ashley, Thank you for your thoughts and prayers... we all have a special bond through our children with AHC. Best wishes, Glenda...
Dear Friends, My name is John and my wife's name is Tami. We live in Indianapolis, Indiana. Our 12 year old son Connor has AHC diagnosed at 18 months. Like...
Hi John and Tammie,im Ashley's dad Dave she is 15, my first question is what medication is conner on. That is the first thing and is there any other problems...
MANEEXP@...
Aug 4, 2004 10:26 pm
3270
hi john and tami, my name is karen and we have a 5 yr old girl named addie rose with ahc and seizures. I am sorry to hear that your son and your family has...
Our daughter Margaret, now 23, had some prolonged attacks when she was 2 or 3 years old. One in particular that I remember seemed to affect her like a stroke,...
Don/Janet Kilpatrick
kilpatri@...
Aug 5, 2004 1:36 am
3272
Hello, This is Carol my daughter Mary is 18. In her life she has had 2 such attacks from which she never recovered. The first occured when she was 3 years old....
Dave, Karen, Don & Jane, Carol, Thank you for your responses and your encouragement. We have gone through what's probably considered to be the usual laundry...
Hi, It's Carol, Mary's mom. When Mary first had her stroke we tried botox on her hand. You know how during an attack the thumb goes in on the hand...well hers ...
Hi everyone my daughter Bethany started on Flunarine a few weeks ago, she'd only been on it fo a few days and she started waking in the night screaming, the...
Hi, I was wondering if any one is on Flunarizine & Depakote. I will be seeing the neurologist in a couple of weeks for my 13 year old daughter Brooke. Her...
Dana Tasi
dtasi@...
Aug 9, 2004 7:17 pm
3277
Dana, Jennie, age 17, was on Depakote and Flunarizine from June 2003 to July 2004. I can't say that I saw any side effects from the 2 drugs together. After a...
Hi Marcia, Did Jennie always have these status seizures? As you may remember, Addie had very bad status seizures also. She never went into a coma though....
Hi John, my son Ryan(23) had exactly what you discribe, twice, however Ryan's stroke-like episodes occurred when he was much younger than your son, the first...
Hi, this is ashleys dad,she is 15 yrs,she is on flunarzine and depacoat,also adavane three times a day,behavior is not to bad but she has her problems.Her ...
MANEEXP@...
Aug 10, 2004 1:19 am
3281
to debbie this is cassie gus's mum, i have four children and only gus is affected. vincent is 6, gus is 5, lucy is 4 and oscar is 2 so those odds are 4:1, i...
Karen, June of 2003 was the first time Jennie ever went status with seizures. It was quite a shocker. Every once in a while I wonder if the flunarizine is...
To Cassie, I was really pleased to get your message, I'd always planned on having 3 children, but with everything Bethany has gone through I have had my doubts...
Hannah, Thank you for you reply. What Ryan has experienced is very close to our own. From what you and others have described, I'm surprised that our doctors...
Hello Debbie, my name is Thelma. My son Mario, which is almost three went throught something quite similar. He would wake up yelling and twisted and turned a...
Hi Everyone, This is Karen Venti, mom to Addie 5yrs old. We are holding our 3rd annnual AHC fundraiser the last weekend in September. We are interviewed by...
Dear all, I have not written for a long time. I have a daughter Aurélie, 10 years old affected with AHC. We are currently using diazepam (commercial name in...
toullec@...
Aug 17, 2004 4:56 pm
3290
This is Carrie Dehn Haley's mom age 12... We have a convey cruiser stroller for sale It has the head restraints and torso holders...great for when they go...
Hi everyone, I took my daughter, Brooke (Age 13-1/2) to the neurologist today. He mentioned a drug that was new to me. He talked about a calcium channel ...
Dana Tasi
dtasi@...
Aug 24, 2004 6:42 pm
3292
hi Danna,ashley is 15,is your daughter on flunarzine ash is and they did not want to put her on two of the same kind of med,but i heard that its something they...
MANEEXP@...
Aug 24, 2004 7:39 pm
3293
Hi Dave, Brooke is on Flunarizine. His first thought was to give it to her at the onset of an episode to try to stop it, not use it in place of flunarizine....
Dana Tasi
dtasi@...
Aug 24, 2004 8:13 pm
3294
Hi, It's Mary's mom, she's 18. Way back when Mary was first diagnosed with AHC, she was about 20 months old. Before she could get flunarizine, we tried ...
Hi Dana, what kind of drug is alprazolam? I'm very interested in anything that might stop an episode, as I too can predict the type of situations that trigger...
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