25%

Approximately 25% of children with autism will experience at least one seizure by the time they reach adulthood. ~ Epilepsy Foundation (also First Signs, National Autism Center and countless others that I don’t have time to cite.)

From 25 to 35 percent of people with autism will eventually experience full-scale seizures. Many others will have seizure-like brain activity, in which there is no obvious effect on muscles but potential effects on brain functioning, such as temporary loss of attention. ~ Science Daily, June, 2011

*

Until my friend, Tanya wrote about her son, Nigel’s first terrifying seizure, I had no idea. I have other friends whose autistic children suffer from rare and vexing forms of epilepsy, of course, but I’d always (ignorantly) thought of them as somehow being in a different category.

But when Nigel – a child very much like my Brooke in many ways – seized that first time, we all learned quickly that there are no categories with autism and epilepsy. That far too often – at least 25% too often – seizures stealthily lurk.

We have been lucky so far. Although we had a pretty scary gut check, Brooke’s EEG came up clean.

But we – all of us – need to be armed with information.

We need to know what to look for.

When the neurologist cum God-figure at Children’s cavalierly tossed out the “Well, you were right to come in. A quarter of children on the spectrum will experience at least one seizure by the time they are in their teens,” I wanted to scream. I knew it by then, but to hear it – well, it was different.

I wanted to ask why the hell he was telling us this *after* we’d come in to check on seizure activity. I wanted to ask why, when they handed us a diagnosis and then sent us on our way with a pat on the back and a sympathetic smile five years ago, no one mentioned that perhaps we should keep an eye out for something so, well – huge.

25% of our kids will experience seizure activity in their lifetimes. Good God.

So what do we do?

We do what we always do. We get educated. We find out what to look for. And, more importantly, we look into what factors might be making our kids more vulnerable.

Yesterday, a friend sent me a post that she’d written on the heels of a study released recently by the American Epilepsy Society detailing the unexpectedly high comorbidity rates of Photosensitivity and Autism / Epilepsy. Please read her post HERE. It matters. She has information that we need to know.

This stuff is scary. But information is power. The more we learn, the more we can protect our kids – and maybe even lower those damn numbers.

Epilepsy Foundation

 

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15 thoughts on “25%

  1. You’re absolutely right, Jess–”information is power. The more we learn, the more we can protect our kids”.

    Once again, you’re sharing information that will help protect more and more of our kids!

    Love you,
    Mom

  2. Our 16yo son’s epilepsy was diagnosed before anything else, so there was no surprise. He’s had absence seizures since he was 5 & tonic-clonic (grand mal) seizures since he was 10..thankfully well controlled with medication until he hits a growth spurt.
    I think though, if we had the choice, it makes sense for the Drs not to “warn” us ahead of time. The LONG list of things to stress about would only be longer, and in 75% of cases, it would never happen. It is important for Drs to pay close attention to the reporting of symptoms though, since absence seizures could so easily go undetected.
    Seizures are terrifying, especially when it is your child, but many, including us, have learned to live with it as just another bump in the road.

    • Christi, I completely understand where you are coming from. My daughter was born medically fragile, and in our case it was the autism that we balked at because I was just so tired of all of the other ‘bumps in the road’.

      Though I often think in retrospect, knowing about seizures out of the gate would have made that first seizure far less terrifying for my husband and me. I would have ‘calmly’ known to call the neuro and make a plan rather than my actual reaction of freaking out and thinking this was something in addition to autism as opposed to being a part of the autism. Knowing about seizures and what to look for is just as important as knowing how to treat the other symptoms of autism. And knowing that the seizures are in relation to, can alter treatments and therapies of the autism itself.

      I’m glad you shared your story, too. I never knew what ‘absence’ seizures were until my daughter had them, and I never knew they were possible because of her autism. Thank goodness your son’s seizures are well controlled with medication.

    • Christi, Thank you for sharing your story. i actually think it’s incredibly important for doctors to inform us of the possibility of seizure activity because so many of the ‘symptoms’ might never be reported otherwise, making the doctor’s responsiveness to them a moot point. especially with the milder, shorter absence seizures that so many of our kids experience, it can be VERY easy to dismiss them as typical asd behavior (spacing out, not responding to one’s name, loss of attention etc – none of these are particularly uncommon for our kids). for kids like my friend’s son, nigel – it’s also important information that has to go into the decision about whether or not he could drive a car. above all though, if we start to find comorbid relationships like photosensitivity, we may then be able to eliminate or at least mitigate factors that could be causative – like excessive video gaming (which, as my friend points out is very common among our kids) or even the flourescent lighting in many schools which a reader on diary’s FB page suggested actually acts as a subtle strobe. the more we know, the more chance we have to make changes that might effect those numbers. I am so sorry that you know this first hand, but I’m very glad to hear that your son’s seizures are well controlled. Thanks for sharing his story – J

  3. OK, something new to worry about! Thanks a lot! ;-)

    But seriously, I did know about this, but in a vaguely back of my head sort of way. Thanks for the kick-in-the-pants reminder to keep on top of it, review the signs and probably get Jake a base-line EEG which he has never yet had. And hope fervently we’re in the 75%. You, too.

  4. My girl has seizures and was diagnosed before we had the diagnosis of autism. However, if she had been cared for the first 9 years of her life, we might not be in the mess we are in now. Oh well, knowledge is power and I am glad you are sharing it. Thanks, Jess.

  5. Our neurologists have been watching my youngest for something called absence seizures. It would not look like a classic seizure- more just staring off into space for 5-20 seconds, but it can cause regressions. Always a good idea to get an EEG- it’s just stickers on their head while they take a nap- no needles, etc. Great information- thanks for sharing.

  6. Thank you for posting this, Jess. We were never told about seizures either. During a rather ‘routine’ trip to the ER with RM for a stomach bug, she had an absence (petit mal) seizure that lasted a full minute and thankfully was witnessed by the nurse, too, so I didn’t think I was crazy. My daughter simply disappeared right before our eyes. There was nobody home. We were slapping her thighs to get her to come back. Nothing.

    We followed up with neuro, had an EEG and it came back ‘normal’. It was a relief, but a year later another seizure came out of the blue at the dinner table.

    Nothing since, and we thank the stars and the moon. But we now know it’s lurking and we have to be vigilant.

    I am so glad you shared this. I hope more parents become aware of what to look for, and I *PRAY* more doctors speak up and tell parents about seizures when they deliver that diagnosis of ASD. I think we wander through the darkness enough, a little more light would be helpful ;0)

    xo

  7. Thank you for posting this Jess. we also were not told about seizures. I guess the good thing is that due to the fact that I have a cousin on the spectrum who also has epilepsy, when we found out my son was also on the spectrum, I asked my Uncle what to watch for…I knew the risk was there, and sure enough, it reared it’s head about the time Dakman was 5 years old. We have stayed vigilant, even though his most recent EEG appeared to be “normal”, I know its still lurking… I have seen the seizure activity myself, usually in the form of Petit Mal. I am thankful, as strange as it sounds, to have family who walk the journey with me.

  8. The same has happened to too many of our kids. Stamped with a diagnosis and sent off to research and discover possible concerns on our own. I’ve received more information from the army of moms than from any doctor.

    Thank you!

  9. As always, thank you for this. For us, it was the opposite. We had the EEG twice because of sleep issues…before the autism diagnosis. We were told he had “brain blips”. Given all the other information we shared with the doctor, I wish he had told us to look at getting a developmental eval for autism. Instead, we were told his sleep issues were not related to his brain blips, and that we needed to be better, firmer parents about sleep. Knowledge is power, and I wish the doctor would have informed us a little better. Yes, there is much to stress about. But the more I know, the better…more proactive…parent I can be for my son.
    Thank you Jess for the reminder to keep an eye on the seizures again. We were told if we don’t see one before he’s 12, then we’re out of the woods. Just 7 more years to go…

  10. Thanks for sharing this. A few years ago, prior to getting an ASD diagnosis, we wondered if one of our sons was having absence seizures. He was “spacing out” for seconds at a time multiple times a day some days and a few other concerning symptoms. Our ped sent us for an EEG and that came back normal so that was the end of it. As time goes on and it all continues, we still wonder in the back of our head if something was just missed with the EEG? He also has a dx of mild tourette’s syndrome. Video games, watching tv and computer time almost always result in his motor tics increasing in frequency/severity during and for several hours afterwards. We went to a computer and wii only on the weekends rule (w/ few exceptions) a while ago partly because of this (even if it’s not actually seizures, there is definately something about them that cause his neurological system to go more haywire than it already is). It’s not an arena I’ve pursued learning much about, I appreciate you bringing it up…

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