Monday, May 24, 2010

ASD & Seizure's our Reality - Part I, Let the Journey Begin


I've written about Nicky's grand mal-siezure; how his body shook, his eyes rolled into his head, he gagged and then when limp. I've shared that in the second he was limp, I thought he was dying, really dying, as in gone, and autism was the furthest thing from my mind.

When I knew Nicky was okay, I sobbed like a baby and within 24 hours I was back in sync. I picked us up, dusted us off and life quickly returned to what I knew; the day to day routine of living with autism - not seizures.

I wanted to believe that his seizure was a one time event brought on by Nicky's simultaneous bout with pneumonia. So I learned just what I had too, and no more.
Earlier this year, Nicky seized again and I was reliving the past. I was jolted out of my denial around Nicky's autism and now I'm being slapped in the face with a new diagnosis of seizure disorder. A new thing, a big thing, another life long thing. DAMMIT! Here I am face to face with the grief that keeps on giving and there is nothing to do but take it on. So I will. I am still a student of autism, and now I get to become a student of seizure disorder. Whoohoo...not!.

Okay, let the journey begin. A large percentage of children diagnosed with ASD have abnormals EEG's, even if they have never had a recognizable seizure. There is a seizure called an absent seizure that is detected with an EEG. We need to get the word out to help families learn more about abnormal EEG's and seizures. Nicky is being treated by a great physician Dr. Michael Chez (he has a book out if you want to read more) who has helped us learn along the way. In keeping with my motto "Information is Power" and focusing on the good to keep me sane I'm gonna dive in and share what I learn, when I learn it.

In the next few days I will begin posting a series called "ASD & Seizures our Reality" which will follow this journey. Please pass it along to anyone you think it might help.

6 comments:

  1. The more I read about GMO foods, the more I'm wondering if embedding pesticides into our food chain is responsible for all the brain abnormalities we're seeing in generations born since GMO foods became a reality.

    Yes, seizures go hand-in-hand with ASD...there is a huge overlap. So sorry that you, Nicky and Evyn had to go thru this again, Donna. (sigh) You are an amazing mom.

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  2. I imagine that you have access to great pediatric neurologists...but wanted to pass along a name of an amazing man (Dr. Michael Chez) in Sacramento. I am an SLP in private practice working exclusively with children & adolescents with autism...nearly my entire caseload has seen him in the last handful of years and more than half have been diagnosed with seizures. Dr. Chez has some very encouraging research and cutting edge medication findings. He's also actively trying to get a "best medical practices" in place for families once they've received an ASD diagnosis...we've got all kinds of best practices of intervention...but not next-steps in the medical realm. All the best.

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  3. Kaary,
    How great is your message...Dr. Chez is Nicky's Dr. and has been for the past 8 years. I can't wait to tell him about the wonderful endorsement that you sent me :). Keep passing the word.

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  4. I so feel for you! I know what it's like to get slapped with something new. My adult autistic son has seizures and self-injurious behavior. He was first diagnosed at about 13 months with autism. Then, months later, seizures started. Then, a year later, punching his face and head began. I thought I was living in a never ending nightmare. I am still am, but by God's grace or whatever else is helping us, we make it, sometimes hour by hour. My son's videos are on you tube under "severe autism" or CDFoakley channel. I hope you find comfort in knowning you are not alone. You seem like an AMAZING woman and mother and I'm sure things will go better for you and your children.Fellow mom dealing with Autism from San Diego

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  5. Seizures are very tricky to deal with. Often , it's a combination of things that will keep seizures at bay. Ie...exercise, diet, exact levels of med at a steady state, homeostasis, hydration, bowels moving properly, etc.....Again, seizures is sometihng I've been dealing with for many months now, as my son didn't have grand mals until he ws 20. He had atonic when he was little, but they were controlled with meds, for most part. Keep in mind somem drugs mixed together cancel each other out: for instance you can't mix depakote with lamicatal at same time, and KNOW, oh please know from our research and experience...docs did NOT tell us this...but lamictal increases myoclonic activity and keppra can increase tonic clonic activity, so you have to carefully balance these meds...keppra and lamictal are good combo, but it's because lamictal will handle tonic clonic while keppra while negate the myoclonus triggered by lamictal...but then again, everyone is different..only your doc can, (hopefully) be the one who tells you for sure.

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