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Old 12-11-2004, 05:40 PM   #1
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nsanders HB User
Question Phenobarbital and Gelastic Seizures

Hello, I havent wrote in a while but we have been really busy searching for help for Austin our 4 yr old. He has been having 240 gelastic seizures a day. They have recently put him on Phenobarbital and we are going through phase one of surgery and we are gonna be going through phase 2 in Jan. But anyone with gelastic seizures that knows of a good medication for them or anyone that has experience with phenobarbital please let me know. We are in great hope that we can find help for him. His seizures are coming from c4 part of the brain. His epileptologist has great hope. Even though Austins neurologist said there was no hope. Any response would be great! All prayers are appreciated! Thanks in advance,
Nikki, Mom of Austin 4yrs old with epilepsy

 
Old 12-12-2004, 08:27 AM   #2
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Re: Phenobarbital and Gelastic Seizures

My son was on phenobar for many years and that alone helped him....then several years ago they go worst...so Tegerol was added....now have added lamictal and taking off the pheno. There are many more drugs that do not have the side effects of pheno. Good luck with the surgery.
Betty
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Old 12-13-2004, 08:57 PM   #3
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nsanders HB User
Re: Phenobarbital and Gelastic Seizures

Thanks Betty for your reply. Austin has been on many meds but none seem to work. He has been on tegretol, topamax, keppra, dilantin, phenobarbital, lamictal and we use diastat for prolonged seizures. We are having a really tough time. So please keep us in your prayers as your son will be in ours. Thanks

 
Old 12-14-2004, 07:27 AM   #4
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tkdmom96 HB User
Re: Phenobarbital and Gelastic Seizures

Hi Nikki,

Our daughter Katie saw a regular neuro for 14 years, who tried every med and combo of meds in the book. We finally said, ENOUGH. And started our search for an Epi after reading a post here over 2 years ago. Katie did end up having a left temporal lobectomy in June and has been seizure free since. We started the testing process in May 2003, lobectomy in June 2004.

So, there is hope! I don't know specifically about the type of seizures your son has, but an Epi is the best place to be. It made a HUGE difference in Katie's treatment course. She went through a year of tests before becoming a surgical candidate. It also went to 3 surgical board reviews before being given the thumbs up.

If you click on my board name, a listing of choices comes up. Click on the one that says "all posts by this member" (or something like that). If you click on that you can read all of my posts all the way back to last winter as we were preparing for this. All of the tests, the exploratory surgery Katie had to had back in April, before the BIGGEE...etc. Look under all of the main titles that talk about surgery, finding a board member (that one has A LOT of info in it), etc.

If you have any questions, don't hesitate to ask. Katie is 16 and has had Complex Partial E since the age of 9 months. All my best to you and your son...I remember that age well, just before kindergarten started. I thought, how can I send Katie off? How can she not be around ME? Who will take care of her? You have to have faith that they will be ok...

p.s. our Epi said their goal is to get to patients sooner (for testing of intractable E)...at an earlier age (if they are surgical candidates) so they don't have to go through all the years of seizuring and failed meds that Katie did. Come to find out, Katie could have had surgery 5-8 years ago already. She was diagnosed with Mesial Temporal Sclerosis, and conclusively through the pathology report.

Take care,
Vicki
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Old 12-18-2004, 07:02 PM   #5
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nsanders HB User
Re: Phenobarbital and Gelastic Seizures

Vicki,

Thanks for your reply. Austin seems to be doing okay. Well the past few days anyway, thank goodness. I think the phenobarbital is making him sick at his stomach but Im not for sure that the phenobarbital is causing it. Did it ever make your daughter sick? I hope things are going well. Merry Christmas to everyone!!!

Take care,
Nikki

 
Old 12-18-2004, 08:37 PM   #6
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tkdmom96 HB User
Re: Phenobarbital and Gelastic Seizures

Hi Nikki,

Katie was on Pheno when she was first diagnosed and we did not care for that med AT ALL. Now, that was 15 1/2 years ago. The med hasn't changed, but at an older age maybe she would have handled it differently. I can tell you what type of problems she had with it back then...

Hyper behavior, trouble sleeping, very teary (cried alot), and off balance. She was 9 months old when she took the med and it completely changed her personality and behavior. She was not herself. After about a month, we said THAT'S ENOUGH!

I'm glad to hear Austin (my Godson's name too) is doing better these days. Don't ever give up the search for new things. You never know what is around the corner.

God bless and have a Merry Christmas,
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
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