Questions about seizure meds.

[Mom2HeathandKynzer]

On the other BT forum I had asked a question about seizures in Kynzer...or actually whether or not ya'll thought they were seizures...well as of Tuesday we did find out for sure that he is having partial seizures on the left side of his brain..and they put him on tegretal(sp?) I have read alot on this med...but wanted to ask the "other" experts...is this a med with tons of bad side effects? Does it usually work? This is all really new to me..and some of the side effects are pretty scary!
Thanks!

[langansmom]

I am sorry they did turn out to be seizures. Ugh. I hate seizures.

Every kid reacts differently to different seizure meds. What is a great med for one child may be a nightmare for another. Here is a great website where parents have logged their impressions of the different meds they have tried with their children. www.kidsepilepsy.com. You can search by med, so you can see a wide range of people's experiences.

Langan was on tegretol when she was very young. She was on the newer version of it, trileptal, more recently. Neither was a good med for Langan. The tegretol did something that caused her to have huge screaming fits. She was less than a year old so we never did figure out what it was but we changed meds and it stopped. Trileptal was worse for her. We are pretty sure it caused her first and second ever status seizures. Our neuro pulled her off of it after the second one. That said, I do know there are many parents who have found that these meds are the answer to their seizure woes.

I hope this helps Kinzer and that the seizures take a permanent hike from your lives!!

(((hugs)))

[LIZARD]

To be honest, I was on Tegretol for nearly 3 years, and it almost destroyed my life. :( I had every single "rare" effect you could possibly imagine--dystonia, aphasia, severe vision disturbances, constant dizziness and tinnitus, complete loss of short-term memory and focusing ability...I could go on forever. :(

This is not meant to scare you but to warn you to be extremely vigiliant in looking for any possible changes in behavior, speech, and any other developmental issues and abilities. I was in college, and suffice it to say that some 18 years after finally succeeding in getting off of it, I still have absolutely no idea how I managed to graduate from college. :( After going on it in December of my freshman year and trying desperately for 32 months to find out why my brain was wasting away (we even thought of a weird form of shunt failure), I figured out for myself that it was the med and not the dose, as one of my 4 neuros during that time had thought. I spent another two years trying to overcome severe PTSD from it, and as you might have guessed, that's why I do what I do here, in large part.

Just make sure to get all the info you can on it, and be mindful that while these things are very unlikely to occur, they certainly can. Make sure to ask the pharmacist--not the doctor--if you think you see any of the effects that could indicate an allergic or adverse reaction. (Also...this is weird, but make sure he stays away from grapefruit! It will alter the blood serum level.)


Good luck!

LIZARD :)

[RathyKay]

Tegretol was the first drug Tom was on, once epilepsy became official... excluding the his NICU days. At the time, I thought it was a good drug. Tom was on it for 1 1/2 years. He started on it at 15 months, learned to walk while on it, started talking. His seizures then changed from simple partials to myoclonics (a generalized-type seizure), which Tegretol doesn't treat, so we switched at that point. We saw a ton of developmental progress when we switched drugs, but I'm not sure how much was Tegretol versus just getting seizures back under control. And, six months later when we had to change drugs again, we had another good boost of developmental progress.

The ONLY thing I remember, when he first started on it, he would take a nap within an hour or so of his morning dose. (Tom was only taking it twice a day. I think three times is recommended due to its half-life.) If I didn't pay attention at night, he'd be asleep right after supper. It was just a matter of finding some time to pay attention / play with him / read a book, etc. or he'd sit and a chair and fall asleep. Every time his dose increased, the morning nap would return for a few days.

While he did learn to walk while on Tegretol, he preferred pushing his sisters' doll stroller It helped him keep his balance, told him where the dips and bumps in the sidewalk were, etc. This did not change when we switched drugs the first time. But, with the second drug change, he quit using the stroller on a daily basis (now it's just for fun... fond memories and all). Tom had vision problems (still does) long before he started on drugs, so I'm not sure how much Tegretol was contributing to his "dizziness" versus a later maturing system?

Of course, now that I know dairy was a big problem for him... not sure how much were drug side effects versus dairy? Anyway, at the time we thought it was fine and it did control the seizures for him. Hope it works for you, with minimal side effects.

Oh, like Lizard said, NO Grapefruit!

[Brandon's Mom]

Brandon was on Tegretol as his base drug for 7 years and I didn't realize just how bad the side effects were until we took him off of them. Once he was off Tegretol, low and behold, we found out our son has a personality. Tegretol had him zombie-like for all those years, he showed little to no emotions whatsoever. Oh, and btw- Tegretol NEVER controlled his seizures either but he stayed on it and his neuros would just add other drugs to go with it. :rolleyes: Of course, NONE of the drugs Brandon was ever on helped with the seizures so Tegretol is only one of many which failed to help him.

His neurologist told me she has taken Tegretol off her list of medications to use, she said Carbatrol is very much like Tegretol, but without nearly as many side-effects so that might be an option to discuss with Kynzer's neurologist.

Whatever med you and the neurologist decide to go with, I hope it works for Kynzer and you see improvement in the seizures.

[CoolAngel28]

I'm agreeing with Liz about Teg...basically because of the lack-of-energy factor..I'm playing with the idea of checking into monotherapy...with another drug,that has been a godsend for me.