Sunday, May 13, 2012

Stims? Seizures? ...A New Worry.

(Trey is 2 years and 8 months)

"Does Trey have seizures?", they asked us during his evaluation done at The Thompson Center back in April.  Of course, our answer was no... I mean, he has never lost consciousness and fallen to the ground shaking!  That's what a seizure is right?
Trey <3

Well, yes.  However, I learned today that there are many types of seizures and Autistic children have a much higher chance of having them.  This is a quote from the Autism Speaks website:
Seizures are indeed more common in both children and adults on the autism spectrum. Independently, autism and epilepsy (seizures of unknown cause), each occur in around 1 percent of the general population. But epilepsy rates among those with autism spectrum disorders (ASD), range from 20 to 40 percent, with the highest rates among those most severely impaired by autism.  Conversely, about 5 percent of children who develop epilepsy in childhood go on to develop autism.
Autism and epilepsy share many similarities. Both exist on a spectrum—that is, the severity varies widely among those affected. In addition, a number of different abnormal genes are associated with increased risk of developing one or both disorders.
Ok.. so, let me back up a second.  The reason why I started researching and reading about the different types and links to Autistic children is because apparently there is a type of seizure sometimes called the "silent seizure"(spontaneous, non-convulsive seizures). The scary part about a "silent seizure" is they are often thought to be typical "stimming" that Autistic children do.  Trey does a lot of stimming...and if they are seizures and we don't know it, could he regress again from brain damage? Now I'm worried.  Very worried.
Along with his SPD, Trey does a lot of visual stimming.. more than just hand flapping.  He rolls his eyes to one side and then starts spinning his body the other way.  He often squints and shakes his head back and forth really fast.  He will also look at his hands or objects out of the corner of his eyes.  There is also many times when he just stares at nothing and doesn't respond when we call his name.  I never gave much thought about all of this.. I thought it was just typical Autistic behavior.  So how can you tell the difference?

I did a lot of googling today.... and instead of freaking myself out about it, I have decided that top priority tomorrow is to find Trey a neurologist to discuss our concerns.  David and I had a bad experience with a neurologist last year and didn't really see the immediate need to find another one...I thought with the Autism diagnosis we could move on to get him the therapy he needed and things would get better.

It's difficult to realize this journey could encompass much more than just therapy.  Autism is a neurological disorder so it does make sense that he could suffer from other health epilepsy, ADHD, SPD.  My mind hasn't even begun to think about possibly putting my little son on medication.  But we will do whatever we can so he does NOT suffer!!
"Silently Seizing"

If anyone is interested in learning more about this topic... I found this book "Silently Seizing" online and from what I can tell, it has a lot of great information from a mother who has an Autistic son with "silent seizures".  I may be buying it soon.


  1. Hi Rhonda, Jamesie has Classic Autism, Epilepsy, ADHD, SPD, pragmatic speech and language delays... he is also a boy and I was told that boys develop at a different rate than girls. Okay, I could live with that because my daughter did everything at a rapid pace. James initially had several seizures in his sleep and the only way I knew about them was he was not feeling well at the time and was sleeping with us. Several exams and tests later he was diagnosed with Epilepsy. I wrote a pamphlet on it for my website here is the pamphlet Find a neurologist you can feel comfortable with and the MRI is really the best test to give a clearer understanding of what is going on in the brain. The exam is done under sedation for these little guys but is very comprehensive. Please let me know if I can help in any way. I have walked this path!!

  2. Hi! My daughter is 3 and has Angelman Syndrome. Part of her dx (which is often misdiagnosed as autism) is epilepsy. Complex epilepsy to be exact! Meaning she has many different types of seizures. After reading your post, I would highly suggest seeing a neurologist! And I think any worth his weight would order an EEG, although your peditrician can order one, too. And sometimes, it's easier to go in that way if your child doesn't have a history of documented seizures. Our daughter is on keppra and ethosuximide, and hers are well controlled. But we do have a diazepam rescue med in case! Good luck, and if you have any questions, please email me!

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