Seizures, Autism, and Our Family's New Normal

BlogHer Original Post

I'll never turn my cell phone off in a movie theater again, not after doing so made me miss the call that my 12-year-old autistic son was having a full-blown seizure.

Two days after our shaken-snow-globe version of a wonderful Christmas, after a week with beloved guests who helped us cook the best holiday feast in memory, I needed a break from being "on." My husband kindly let me take my eldest daughter to a late-night viewing of The Hobbit, where I gave in to the theater's barrage of Cell Phones Are Evil ads and silenced my phone. As I am a believer in social contracts, and would never want to disrupt anyone else's theater-going experience.

But even though I kept checking my phone, I didn't do it frequently enough -- because as the movie ended and I took a guilty peek, my phone was practically on fire with frantic texts from my husband and voicemails from both him and a 911 operator, letting me know that Leo was seizing, that my house was swarming with paramedics, that Leo needed to go to the ER and...

...and then I was barreling home, sobbing, to meet my calm, on-point husband and befuddled pajama-clad 8-year-old in our driveway, just as the ambulance pulled away with Leo inside.

We followed the ambulance to the ER, where my husband kindly took our girls to the waiting room and I got to see Leo. His seizure had happened in conjunction with an out-of-the-blue episode of anaphylaxis (extreme allergic reaction), so Leo was not only continuing to seize, but the swarm of nurses around him had to help him breathe through a tube and a bag. There was nothing we could do but stand by and watch as, via a combination of anti-seizure meds, steroids, and anti-allergy meds, Leo's seizures slowly subsided and he started breathing sufficiently on his own.

The ER staff asked my husband and me question after question, but we had no answers for them -- Leo had never had a seizure before, he had never had an anaphylactic reaction before. So they ran tests -- a CAT scan, lung x-ray, bloodwork for insulin levels, the works. All results were normal.

My husband sent me and Leo's sisters home at 1 AM, opting to stay with Leo, who was being transferred to the local PICU for more testing. (My husband wanted to be present to answer any questions about the original seizure and anaphylaxis episode). Shell-shocked, I took the girls home and put them to bed, then texted back and forth with my husband for the rest of the night. New tests. No answers. EEG to come. EEG tolerated, sort of. EEG revealed nothing. Finally, Leo was sleeping.

Even better, around 9 AM, it was finally OK for us to come visit. We walked into the PICU and found Leo lounging in his bed, slightly dazed, sporting an EEG-gel 'do. He was happy to see us, but not, I am guessing, as happy as we were to see him conscious and alert.

We talked with the pediatricians, the pediatric neurologists, and still had no answers. Leo had had an allergic reaction to an antibiotic a month before, but hadn't taken or been near the offending med in four weeks. Autistic kids often develop seizure disorders, sometimes during the onset of puberty -- which we already knew. Leo had had an EEG in 2004 during his initial autism diagnosis test battery, which revealed seizure-like brain activity that would be a cause for alarm in an neurotypical kid but not for one with autism -- for autistic kids, we were told, you just watch and see if they develop seizures. And the current doctors didn't want to put Leo on a seizure med unless he had another episode.

Leo's Hospital Bed - Taken by Leo
Leo's hospital bed - taken by Leo

They moved Leo to a regular pediatric hospital room for 24 hours of observation. Nothing else happened except our active son got rather tired of being in a hospital room, despite the truly excellent on-demand food and movies. And then we went home.

And now? Everything's different.

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