Hi Rebecca, Addie doesn't have any kind of birthmark like that. Perhaps others can help. karen [Non-text portions of this message have been removed]...
My daughter is 23 years old and has been able to let us know that she is going to have an episode since she has be around 10 years old. I would like to say...
Mary, 18, had 2 birth marks when she was born. One large purple on her right hand which is still there, but has faded to light red. The other, reddish in ...
With her trigger attacks we can try to be preventive and look for clues. Because she wants to keep doing whatever she's doing we've had to talk to her about...
My name is Laura. My 3-year old son, Wesley, has been diagnosed with Alternating Hemiplegia. He is currently taking 5 mg of Flunarizine a day. I am new to...
Hi Laura! My son Cameron has been taking Acetazolamide since June, and it seems to be helping him. The only side effect we have noticed is increased...
Hi Heather, Jocelyn and you, sound so similar to me and Addie. I think I always remember reading your emails and thinking how similar we are. The only...
Hi, my daughter Bethany, 4 years, also has a birthmark on the bridge of her nose, it started as a prominent red, and has now faded, but seems almost 'bluish'...
Actually he never has. He has been treated with a number of different anti-convulsants, and takes supplements, but we have not tried the flunarizine. Joanna...
I have a quick question, about an episode my son had on Monday. This one was brief and only lasted about 20 minutes, but usually they last longer - more like...
Hi Laura: My daughter, Leslie is also on Acetazolamide. We find it to be helping a lot. She has been on it since May and things have definitely improved for ...
Lynda Burnham
lynda.burnham@...
Oct 3, 2004 2:41 pm
3512
That sounds just like what my daughter does once a month, the neurologist is calling it ataxia. She is too young ot tell me it hurts but she seems so...
... Thanks! I'm glad to find someone else who had seen the same sort of thing! Does your daughter seem very weak during the episode? Does she seem stiff, or...
Elie is always floppy, she has a very weak trunk and hyper extended hips, but before she has an episode of ataxia or whatever it is, she gets real weak, her...
HI Lynne: Emily, (12) has been telling me about her episodes for as far back as five years old, we used them to help her learn about her body and parts and ...
Hi John Bowman, I was just wondering where you are from. My son Ryan is also 23, born in '81. It would be interesting for them to get together. Can your...
Hello: We live in Wheelersburg Ohio, which is in the most southern part of Ohio. My daughter has just begun to use the internet with help. Since I found...
Lee, Thank you so much for that. I will print this and take it as great advice, as my Elie is only 2 and I worry about the self image/esteem thing as she is...
Yes Laurie we have tried flunarizine. Three times and she did not do very well on it at all. First it did not do anything for her limps and then she became...
Lynda Burnham
lynda.burnham@...
Oct 5, 2004 10:58 pm
3521
A couple of weeks ago rashes were a hot topic....I'm trying to figure out if Zachary's rashes are related to Flunarizine or something else. This is the third...
Hi, this is Pam, Terra's mom. We live in Wheelersburg, Ohio. We have met several of you at the Chicago meetings. We are once again looking for a new...
Pam and Terra, We live in Cincinnati, Ohio and see Dr. Silver. He diagnosed her at 3 yrs (we e-mailed a Neuro in Seattle about another possible cause of...
Heather-does your child just have AHC or does she have other things. What are her episodes like. You said that you had her treated for epilepsy. My son,...
Hi Heather, thanks for replying. Terra was born in 1981. We started out with a neuro in Columbus at about 2 months. He had no answers, and after awhile an...
Hi Laura, I'm Carol and my daughter Mary is 18. There is a very wide diversity among the kids with AHC. Some cases are very severe, as with my daughter, and...
Lee, I apologize for taking so long to respond. Don't worry about explaining too much, it's very helpful and I appreciate it! :-) It's hard to find ...
Dr. Silver is in Chicago at University of Chicago Children's Hospital. If you look up that and search Dr. Kenneth Silver you can find out about him, his...
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