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Inability to walk after a seizure
Thu, 01/25/2007 - 21:20Topic: Medication Issues
My daughter just started felbatol less then 2 months ago and we are weaning her off keppra. She's also on vigabatrin. THe doctors say these meds have no known "interactions". She has Tuberous Sclerosis so seizures have been impossible to control...probably lennox-gastaux. Her body is tolerating the felbatol well, and since she's tried 13 meds with no success (except vigabatrin which stopped her infantile spasms), the felbatol is really the last one we have to choose from. She is post frontal lobectomy to remove to tumors 2 years ago. She is severe MR, non-verbal, has autism but gross motor has always been very good. Since she is unable to tell us what happens during/after seizures, everything is a guess for us. She holds her hands to her ears during an absent seizure-we believe this is an aura and it gives us a few seconds to get to her if it advances into a myoclonic or tonic clonic. Since starting the felbatol though her tonic clonics have gotten worst and she is virtually unable to walk after even myoclonics anymore. The nuero thought at first it was med related-a side effect. Now she thinks it's a post-dictal effect. Funny thing is it doesn't happen every time and tonight she had no problems walking even after a tonic clonic. She is so multifocal that I'm thinking it could just be caused baesd on where the seizures happen to be originating from. Can anyone give me insight to this or had experiences they'd like to share? Since she is unable to speak, I'm hoping to get some insight from those who have personally experienced seizures and post-dictal problems as well as side effects. Has anyone ever heard of felbatol making grand mal activity worst? Thanks so much for your help.
Comments
Re: Re: Inability to walk after a seizure
Submitted by faithsmome on Fri, 2007-01-26 - 14:09
Thank you for sharing your experiences Quirky and you have been quite helpful actually. Lately I'm shocked at everything she does anymore-especially walking after tonic clonics...but I've always said that it's her determination that has gotten her as far as she's come so I can't say that I'm surprised that a grand mal seizure doesn't keep her down either! While her gross motor skills are her highest function, motor planning is not and by the sounds of your post, the seizures could definately be having a major impact on this area for her especially considering there was discussion of removing her motor strip at the time of surgery. And since her brain is chaotic pretty much all the time now, I'm pretty much ruling out the meds doing this to her. Interestingly, her recent eeg showed that her brain is actually calmer DURING a seizure then when no seizures are present. I call her my "little enigma wrapped in a question mark" because she's quite the opposite of what doctors find in others. Thanks again and I really appreciate you sharing this piece of your life with me in order to better understand my daughter.
Re: Inability to walk after a seizure
Submitted by Mary S. on Fri, 2007-01-26 - 17:12
I don't have experience with felbatol, but I do have experience with Keppra. We tried to wean me off it last summer, and changing that dose around resulted in convulsions and more seizures for a while. Is it possible that your daughter is still reacting to that change? I don't usually convulse during my seizures, but when we were messing about with the Keppra, it happened a lot, and it really played havoc with my motor coordination. If that's a possibility, perhaps this will resolve. I've noticed that sometimes my post-dictal experiences are very different, depending both on the severity of the seizure and on my physical state before it. If I'm tired before I seize, walking is pretty much out. So, if fatigue is part of the new drug's side-effects, maybe that has something to do with it?
I don't know if this is helpful, I'm only an expert in HAVING seziures :P But perhaps it's something to ask the neuro?
wishing you both well,
Mary
___
But I'm NOT on cheap drugs, they're just government subsidized.
Re: Inability to walk after a seizure
Submitted by quirky on Fri, 2007-01-26 - 08:31
Hi faithsome I dont know anything about felbatol, sorry...but I can tell you from my own experience of having tonic clonic/grand mal seizures I can never walk afterwards! I would be literally paralysed for a while before making a move, or sometimes if I can make a move my body is not focused enough yet to do movements correctly. I cant think with my body straight yet in other words. I'm weak and I'd be very wobbly and stagger and I'd walk into the wall rather than through the door like I'd be wanting to do. It takes time for me to come around after a grand mal seizure. I'm surprised you say she can walk afterwards in your thread that night! But I supposed everybody is different aren't they? Sorry for not being more helpful, Quirky