Wednesday, August 19, 2009

Epilepsy 101: Gen Seizures and Seizure Provoking Meds

Yesterday (Tuesday) we had our meeting with the surgeon at Cleveland Clinic, but since I'm writing this on Saturday I am not sure when I will actually be writing that update.

Meantime, back to some educational stuff on Epilepsy with Episode 4: Understanding Generalized Seizures, from the series I've been linking to from the Epilepsy Therapy Project. While Bennett does not experience a 'typical' Generalized Seizure, he does have what is often called a 'secondary generalization' in his EEG readings, and from time to time has the absence style staring described in the video.



I'm told that, even if the surgery in a couple of weeks is successful in stopping the Infantile Spasms seizures that Bennett will still have a high probability of having other seizure types as he moves through life. I can live with that, as long as we also have a chance of controlling them with AED's and he has an opportunity without the IS to learn and grow and maybe catch up to his peers.

Something else I wanted to share. Came across it in one of my many hours spent reading about epilepsy. Some medications, and by that I mean non-AED medications, can possibly cause seizures. Never ends does it? And the thing is nobody really knows all this shit, I mean the Pediatricians, so WE have to be the ones who learn it all.

Here's the article itself and here's the link to a PDF of the meds list. Interesting to see Ritalin and Concerta on there, since a lot of kids might beat their seizures early on but might have an ADD thing and then these drugs have a shot at causing a breakthrough seizure.

Definitely made me think of Jen and her family only because I know her son has battled both Epilepsy and ADD. I know they've tried Adderall XR (I was on that for a while) and Vyvanse (which I just started taking for the first time Saturday, August 15...yes, as I write this, today was my first dose), but not sure if they've tried the Concerta or Ritalin.

Anyway, important stuff all around to know.

9 comments:

  1. Good information Ken. I hope it went well yesterday. Or as well as it can go when talking about that subject.

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  2. I have been extraordinarily frustrated by the lack of education on the part of pedis and even the therapists who work with Trevor.

    Once upon a time...I wanted to put together some sort of workshop or even a stinkin' handout. Something that other parents could download and use in their local enviroments to help bridge that gap.

    But then seizures relapsed. And finding the energy to do much of anything other than care for Trevy...and Tobes and Bri...has been difficult.

    Interestingly...I thought that seeing the seizures and knowing the meds Trevor was on would help spur better understanding and communication. But I have found there are some people who WANT to understand. And some to whom it's just a job...and I'm not sure anything could ever help them "get" it. And by "get" it I do not mean fully understand IS, AEDs and how it effects Trevy...but at least make an attempt to.

    Obviously a soapbox...

    ...danielle

    ps. I never got that frosty...was too dang hot to move!

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  3. Hey Ken- good luck with the Vyvanse. Just keep an eye on food intake. I know for an adult it's not as concerning, but Austin just never wanted to eat.

    Also, for your readers, I just posted a link to an article about seizures and ADHD meds. Find it here.

    We will be trying Focalin next.

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  4. It's so crazy all the stuff that can happen with our IS kids bodies. Just the AED's themselves keep me on my toes. KC has seizures and behavior/sensory issues so some meds help the seizures but make the behaviors worse (leading to a very miserable KC, which then half way negates the point). Others don't normalize his EEG enough, and then that leads to behavior issues. (again, unhappy KC) So we are constantly trying to find that magic dose. I can't even wait until we get to trying other stuff for his other issues. Fun times. And as far as the Pediatrician....completely clueless!!! I end up educating her every time I talk to her, which she doesn't care for lol. I try to avoid the pediatrician as much as possible for that reason and because of the tension surrounding the vax issue. They like to remind me how I am putting my kid in danger by not continuing, and I can't help but remind them what happened last time I did vax. Ha, but I guess I am getting off on my own little tangent here.
    I hope everything is going ok right now.

    Karen

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  5. Interesting. And it's always a good idea to be educated because the peds really don't know all the in and outs of disorders like this. Ours is way overly cautious, not necessarily a bad thing, but he won't do ANYTHING -prescribe anything or recommend anything without telling me to consult the epi. EVen Omegas..he wouldn't give me the green light. Or immunizations either. He says he won't proceed (even with my consent -not that I'm ready for that) until the epi gives the go ahead.

    The therapists...Danielle -super idea. I know our therapists have the big flashing ????? all over their faces!! I've printed good info for them and I still got a blank face when I told them the hyps had cleared. Go figure.

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  6. Hey I know you are way to busy to think about this now, but when you get a chance will you let me know if you mind or not that I put a link to your blog on mine? I'm doing some updating in hopes of getting the motivation to write. I already added your link, but of course will take it down if you wish.

    Thanks
    Karen

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  7. Hope you get what you want out of your new medication.

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  8. Sinead:
    Yeah...you know the scoop. Risks this, percentages that.

    D:
    When the dust settles, maybe that's something we can work on. Continued support for people in the hell.

    Jen:
    I have lost some appetite. But that's a good thing. I'm way too freakin' huge right now anyway.

    Karen:
    Tangents? Good. And yours was interesting. And yeah, link away, never bothers me. Thanks.

    Holli:
    I'm still secretly giggling that you didn't know the surgery was next week. :) I'm yanking your chain, you know that right? Totally cool.

    Telmo:
    What I want is to be completely high 24/7 and not feel like shit. But I'll settle for reduced anxiety.

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  9. Okay...so was that a FB thing?? You KNOW I'm a slacker in that dept!!

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