My daughter Kristen was diagonosed with AHC at 6 months. She started with epilepsy at 3 years old. The Dr she was seeing at the time told me that this was a...
Hi Yvonne, Can you share what antiseizure meds helped if any? My daughter is 7yrs and on Keppra which helped her. I know it has not helped many others and...
Hi Val I see you are getting a barrage of questions!! I have a few also if you could please take the time. Do you happen to know the dosages your son started...
This is a reply to "JIMMYAHC" My daughter Kiley was treated for epilepsy from about 3 months of age to 18 months of age. I came across AHC on the NINDS...
Just a note to respond about the seizures. Kristen's seizures are very different from an episode(we use this term for the AHC). When she has a seizure there...
Karen, Kristen takes Lamictal 4oo mgs daily, zonegran 300 mgs daily, diazapam 5 mgs at bedtime and Flunarizine 10 mgs daily. We have the diastat for seizures...
Thanks for your response. This is all to further understanding of AHC and help all. Sometimes it is hard to write because I (we) are so close to this and wish...
Hi Yvonne, I think I may have asked you this a while back about the VNS. How old was Kristen when she had the implant? What were the pos/negs experienced if...
Hi all: I've just been reading all these postings about this research and have found it very intersting. Our son is 16.5 yrs old and has AHC and also has had...
Hi Val, I think you have mixed me up with someone else who has responded to you, as my son Ryan is the only one in our family with ahc. Sorry for the ...
Hi Jimmy, your experience with your son at a young age is very similar to what we went thru with Ryan when he was 6-18 months old. But to address the ...
Thanks for your response. I help train boxers and it was at the gym that I saw my second grand mal that I'd mentioned; that kid was perfectly normal and in...
Hi Adele, It's Dennis, Jimmy's father. We met in Boston and NY too. I know we were talking at the dinner and remember Louis being a little tipsy from some just...
The information and comments made in our emails are based on our experience with our son and are not intended or implied as advice and must not be taken as...
Jimmy: your question about hemiplegic migraine is interesting as I have a son 16.5 with AHC and a daughter 19 with possible hemiplegic migraine-- they have not...
Karen, I don't mind sharing the information. I can't really say that there were any problems with the VNS. Kristen had the surgery at age 6. She didn't...
HI all, I have been off for a long time and am just reading over the messages of the last couple of months. I used to read the postings and feel such sadness...
In reading recent postings, I found a comment from Karen that she thougth 20 mg of flunarazine was top end dosage. I have always been very curious in this,...
Hi Brenda I am sorry Joel is going through this. It is so scary for all of you. Addie had seizure from the beginning about 3 mos old. We originally were put...
Yes. How is her energy level throughout the day? Did the VNS change that at all? Addie only lasts at school until 1220 and she is soooo tired, comes home and...
Thanks Karen, I had a feeling the EEG would be a waste of time, but, we will press ahead with it, if anything, it will be great to catch up with Cassie and Gus...
HI Brenda, Alex started seizures at 18 months and we have tried almost all the seizure meds out there with no success. WE've also tried the VNS and are...
Hi, Karen I was interested and reading your email and are you are giving Addie 15 mg of Flunarizine in the am and 15 mg in the pm......or do you break it up...
Hello Brenda, I was sorry to read about Joel's grand mal (clonic tonic) seizure. I do remember Laura having one at that age when we were holidaying in...
Hi Jennifer Addie takes 5mg in am and 10 mg/pm of flunarazine. I think we should start some sort of video-bank of our kids. THis is all too confusing and most...
Hi Brenda Iforgot to mention one of the clear distinctions for Addie seizures are that she loses consciousness or you could also call it non responsive karen ...
Karen, Kristen did very well after the implant was put in. It took awhile for her to get used to being able to go outside for a long period of time. She was...
Yvonne, Hi Natalie here. I have been reading the recent posts with much interest, epecially in relation to the VNS. I haven't had a good time of late - most...
... can you give me a bit of information on VNS, i have not heard this term before, who speak of surgery and implanting this, where is it implanted. Catriona...
Hi Glenda, Gus and Joel both have appointments with their neurologist on Monday 20th November. The boys will have EEG's early in the morning, then see the...
