May 26, 2009
Seizures, and What they Feel Like
Our local autism society invited a wonderful new author, Judith Scott, to speak last night. Her book, Out Came The Sun, is about her family’s journey through the diagnosis, and subsequent hardships and successes of her daughter who was born with Partial Trisomy 13, a very rare genetic disorder.
I’ve just started the book, and I’m sure I’ll have more posts inspired by it, but let’s start with seizures. Mrs. Scott told us that her daughter had a seizure disorder, not uncommon for persons with Partial Trisomy 13. When the talk was opened to discussion, I asked when the seizure disorder presented itself.
Her answer (the gist, anyway): “Around age 8. It would normally present between the ages of 6 and 8, and we thought we had escaped. But then we got the call from school that she had a grand mal seizure. Luckily, we found the right medication.”
I explained that I think about this often, because there is some rate of co-morbidity between autism and epilepsy. And I think about how hard it would be to put Jonathan on a medication if he were unable to tell me how it made him feel. And I know how hard this is, because I have Epilepsy, diagnosed at age 38.
Her question to me: “Do you know when you are about to have a seizure? Can you tell, do you feel dizzy, for example?”
Now, I’ve only had two grand mal seizures in my entire life, nine years apart. They didn’t diagnose me until after the second. But before the second, I kept having flash-backs to how I felt before my first seizure, and I kept spacing out, which I learned later were petite mal, or absence, seizures.
I’m giving you all this background because it occurs to me that I know more than a few children on the spectrum who have seizures. It’s easy to imagine what a grand mal might feel like, not as easy to realize how awful the absence seizures are.
For me, with each grand mal, I lost a few hours of my life that I will never get back. I will never have memories of starting to convulse, of falling, of incontinence (this is where memory loss becomes a blessing in disguise). My first memories after a seizure are of being startled and fighting, hitting out at anything nearby. Then IV fluids, calling the neurologist, and making EEG appointments. And then being exhausted and scared.
The absence seizures, nobody talks about, perhaps because they are hard to comprehend. You remain conscious, yet you lose time. You can be walking, and realize you don’t remember getting from point A to point B. When I try to explain this, I inevitably get, “Oh, that happens to me all the time. I’m constantly looking for my glasses and forgetting that they’re on the top of my head, or finding my keys in the refridgerator. You’re not having seizures.”
But it’s more than that. I remember finding myself outside my apartment building with a bag of garbage in each hand, looking at the dumpster, yet having no idea how I got there, or what I was supposed to be doing. Finding myself in the break room in front of the candy machine with quarters in my hand, and not able to comprehend why I was there or what to do at the moment. Of bumbling my way through conversations with my boss, and honestly, that job didn’t last too long. My personal favorite? I was watching television, and it was too loud. I was holding the remote and it wasn’t working, and I couldn’t figure out what to do. I was totally helpless. My brain could not process either option of walking to the television to adjust the sound, or getting new batteries for the remote. I simply had no idea what to do, how to perform the simplest of tasks that I had done nearly my entire life.
So that’s really it, absence seizures are more than spacing out, they leave me feeling helpless. It’s awful and scary.
Why am I preaching, droning on about this? Because most parents are loathe to medicate, especially if their children cannot easily take medication. The thought that a child might be medicated for life is scary. And as I mentioned before, that not knowing how a med makes your non-verbal child feel is scary. So it’s easy to blow off these little seizures that don’t leave your child convulsing on the floor. And if you haven’t experienced them, you don’t realize how scary they really are to the child or adult who is having them.
Please, if you suspect that your child might be having absence seizures, or you see your child spacing out, see your doctor. Don’t blow it off. It can be controlled, and it’s worth it.
Shea's Mom said,
May 26, 2009 at 2:53 pm
Wow, thank you for describing that.
You’re right. Sometimes medication is the very best thing. The trick is knowing when. Obviously seizures is one of those times.
Christine said,
May 26, 2009 at 3:45 pm
So there is medication that can help prevent both grand and petit mal seizures? Sorry I don’t know much about epilepsy, but it seems if a med can prevent a child from having to deal with the frightening experience of a petit mal as you’ve described it, then it’s worth it. Especially a special needs child who already has many more frightening things to deal with in life that can’t be prevented. I’m usually anti-medication, but can assert from firsthand experience that anxiety can lead to depression, which is worth avoiding at almost any cost…
jlewicky said,
May 26, 2009 at 4:08 pm
Well, there are many medications, depending on they type of seizures, where they originate (they can be localized in the brain – coming from one area, or generalized – mine are generalized, all over). That, and just like antidepressants, different people tolerate anticonvulsants differently. I wasn’t diagnosed until I was 38yo, and quite honestly, I’m surprised my marriage survived the first med I was on. I think I lasted 6 weeks on that one and then found one that works. Some ppl go through several. And honestly, it’s SO hard, when a child can’t tell you how he feels, to contemplate meds that could make it worse.
But I’m with you – finding the right medication is key, and important. Thanks for asking!
Christine said,
May 28, 2009 at 8:59 am
Oh, OK, now I see why the reluctance—it can be a painful process trying different meds until you find the one that does the trick. Ugh. Well still it’s worth it in the long run. Sometimes the hardest things to do return the best results…thanks for sharing, I hope this benefits others facing the situation.
Judith Scott said,
May 29, 2009 at 12:09 pm
This is, hands down, the best description of what a seizure feels like…and one I have been looking for literally for years! As my daughter cannot communicate, I rarely know when her seizures might be coming on. It’s only in retrospect that I figure out that she seemed extra clingy, anxious, or downright fearful. After reading this, I am more convinced that we are doing the absolute right thing by using medication 2x a day to keep Emily’s seizures at bay. Luckily, we found the right medication immediately and only have to adjust the dose as she grows. It does have side effects, namely drowsiness, but I’ll take that any day over the horrendous fear of seizures (and Emily would too, I bet!) Thank you for your honest portrayal of what seizures feel like!
Amalia Starr said,
September 26, 2009 at 9:16 pm
My son, Brandon is 36, and has Asperger’s, untreatable epilepsy, and severe learning disorders.
The professionals who worked with my son said he would never be able to live alone. They were wrong. Brandon has been living on his own for the past twelve years, enjoying his independence. In my newly released book, Raising Brandon I write all about how we accomplished his dream of independence. I also include a chapter on seizures stating that approximately 25-35% of people who take their seizure medication continue to have seizures. Brandon falls into that category. I also talk about alternatives in my book describing a few that have worked well for Brandon. To any parent who has a child who has seizures I would suggest you keep an open mind there many are good alternatives and options to review. Keep opening new doors and keep on believing. Medication is not always the answer. http://www.AmaliaStarrSpeakerAutism.com
jlewicky said,
September 26, 2009 at 9:51 pm
Thank you, Amalia, for that insight. Perhaps I should clarify – I’ve met more than a few parents who don’t want to treat absence seizures. My stance is that treatment should be pursued. Finding the right treatment is key. Thanks for commenting!
Karen said,
November 21, 2009 at 1:53 am
Thank you for writing this. I have epilepsy and have had two grand mal seizures and experienced absence seizures while in the hospital. I was too drugged up to remember those, though. I am on medication but I feel like I may have experienced some of those moments that you describe. I’ve been chalking it up to “mommy brain” since I am the mom of a very rambunctious 1 year old, and now I’m wondering if I’m actually having extremely brief absence seizures. I’ll be paying more attention now to those feelings. Thank you so much for sharing your experiences.