Seizures, Autism, and Our Family's New Normal
By Shannon Des Roc... on January 18, 2013
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
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.
Leo hasn't been himself since coming home. It's difficult to know whether he is having his typical annual reaction of varying intensity to winter break's schedule disruption and reduced activity level, or if he really is different. But he is ... unsettled, and frequently unhappy. I'll give him another week of being back in school before ruling out the schedule factor.
He has EpiPens. At home. At school. In his backpack. His school, being awesome, responded instantly (even during the break) about their need for Leo to have a seizure protocol in place, and about getting Leo's class staff and bus driver informed and properly trained for both the seizures and the EpiPens.
We are taking turns sleeping with Leo, because his seizure happened during bedtime. I know an ASD child who had a second seizure while sleeping ... and never woke up. I know other autistics whose seizures happen after going to sleep. This makes for light sleeping from the parent perspective, though Leo himself is delighted at the nightly slumber party. He's not sleeping as much as he was before the incident, which is also different.
We can't travel outside of cell phone range or take Leo on flights longer than two hours, for now. After years of Leo getting used to loving traveling, and for a family who considers "together time" long hikes in the deep dark remote wilderness, this is going to take some getting used to if it turns out to be permanent. And of course, we will get used to it, if that's what we need to do. We're a family of adapters and accommodators, including Leo.
But I'm different, too. Grouchy, depressed, unable to think straight, declining work, declining company, crying at the least provocation or any time I can't block the image of my husband trying to call me as he sat alone with our seizing son and I did not pick up. Part of it is a variation on PTSD, part of it is being thrown back into the whirlwind of We Don't Know What's Wrong With Your Child.
I know it will get better, with time. It got better after Leo's autism diagnosis -- though that process took years, and it didn't have to be so awful, and I'm proud to be part of providing better resources for people and families with new autism diagnoses. We have been reassured by many friends who have, or have children with, multiple diagnoses -- this will become our new normal, whatever "this" turns out to be.
We haven't stopped looking for answers. I have an appointment with Leo's pediatrician tomorrow, to see if we can figure out the source of his allergic reaction, and to pursue more tests with a neurologist. I continue to talk with other parents, and with people who have seizure disorders themselves. Their friendship and advice is a priceless privilege, and helps us ask the right questions when we do talk with Leo's doctors.
We're forcing ourselves to keep moving, keep being ourselves. We decided to keep on hosting the family-friendly New Year's Eve party we'd planned, even though it happened two days after Leo was discharged (for us, the ball dropped at 7 PM, which was midnight in Nuuk, Greenland). Though I was sleepwalking, it seemed a success, and Leo and his sisters had fun. We took the kids hiking and mushroom foraging on New Year's Day. Leo and his sisters and I spend the rest of the winter break exploring all the playgrounds they would tolerate.
And ... my husband and I went on a date one week after Leo was discharged. We gave our sitter a form that gives her legal permission to take our kids in for medical treatment, copies of our kids' medical cards, a list of our cell numbers and numbers for places we'd be, and printed out our address, cross street, and home phone number. We didn't stay out late, but for the first time in a week we both left Leo's side. It was a healthy step in the right direction. Leo is certainly not going to stop living his life at full speed; we just need to re-learn how to follow his example.
More on autism and seizures:
Jo Ashline on her son's seizures and meds.
Self-advocate Kassiane Sibley, on What Epilepsy Is:
Epilepsy is always having to be vigilant.
Epilepsy is knowing every escape route in case of a seizure.
Epilepsy is having to carry a first aid card, an ICE sheet, and wear a medicalert.
Epilepsy is doing all that, knowing all too well that no one actually looks.
Epilepsy is hoping people don't run away the first time you have a seizure.
Epilepsy is always being told that 'there are meds for that'...
...please read the rest of What Epilepsy Is.