Friday, June 29, 2007

Autism and Seizures

So, I am writing this from Hackensack University Medical Center, where my daughter has been admitted after having a seizure (we believe, we did not actually witness it) early this morning. She's staying in this wonderful new building devoted to children and women (i.e., pregnancy and childbirth), and this room has full internet access displayed on a hi-definition widescreen TV, and we were watching Barney on YouTube (her love for Barney has been going strong for a decade now), and she thankfully fell asleep for a while, giving me a chance to do some stuff online.

But now, my wife has returned with my son in tow, Sarah's awake again, so I think I will have to continue this later. . .

Okay, so I'm back at home now, after having a late dinner at the Arena Diner in Hackensack with my son. My wife is staying overnight at the hospital with my daughter.

So, what happened is that early this morning, my wife looked in on our daughter, and called me in frantically. There was an irregular circlular blood stain, still somewhat wet, about six inches or so in diameter, under her face as she lay on her side. We tried to rouse my daughter, but she was like a sleepwalker, seemingly awake but unresponsive. She made almost no acknowledgment when we were speaking to her, like she could barely hear us, and could not understand what we were saying. This sort of response is not unusual for children with autism, but out of character for our daughter, who at least knows to pay attention when we talk to her. She seemed to drift off, like she wanted to go back to sleep, and her eyes partly rolled up into her head.

The blood had come from her mouth, and she didn't respond when I told her to open her mouth, so I opened her mouth myself. It was pretty shocking to see what appeared to be her teeth looking mangled, like she had been punched or fallen on her face, but that turned out to be an overreaction. It was just one tooth, one of the two front teeth on the bottom, that was turned forward, sticking out almost at a 90 degree angle, and that was the source of most of the bleeding we were later told, although her bottom lip was also swollen and bloody. The injury apparently occurred as a consequence of the seizure (and thank God that was the worst of it!).

So, my wife sprang into action and got her ready, I threw some clothes on and drove them to Hackensack Hospital, where there's a pediatric emergency room. In the meantime, our daughter had snapped back to consciousness, and fortunately there were no recurrences of the seizures. In fact, because she was pretty much back to normal, she was not a happy camper in the emergency room, what with them taking her blood, hooking her up to monitors, putting in an IV tube, etc. And she was especially perturbed when they took her to the emergency dental suite--we were with her, of course--where they cemented the tooth back into place until she can see a pediatric dentist--it took them several attempts because she was so uncooperative, and screaming like a banshee. The tooth may not survive, the hospital dentist wasn't sure.

Afterwards, it was decided that she would be admitted for observation, I left because my invalid mother was out of food and was counting on me to go good shopping for her (we are the generation that's squeezed at both ends, how many times have I heard that!), ran home to check on my son, and back to the hospital, where a nurse was gluing electrodes to my daughter's head for a Video EEG, which she was not happy about either, trying to rip them out, screaming, sobbing, etc. She'll be wearing them for an extended period of time while they look for abnormalities that would help them identify the nature of her problem. We don't know how long that will be, a day, two, or more?

After her new hairdo was cemented in place, my wife left for a bit, and I stayed with my daughter and continued to play the short segments of Barney on YouTube. A rabbi came by and we chatted for a little while, but there really wasn't much to be said. One day at a time, do the best that you can, there is no other choice. I did fell better, because I had intended to go to Shabbat services at Adas Emuno tonight, and wasn't able to.

So, we watched more Barney YouTube videos, and during one I dozed off for a minute, and in that time my daughter ripped off a bunch of the electrodes, so the nurse had to come in and redo them. After that, my daughter started to get drowsy, and fell asleep, and that's where this entry began.

Something like 20-30 percent of people with autism also suffer from seizure disorders. As if it wasn't hard enough dealing with autism! It does demonstrate, in a very dramatic fashion, that autism is a neurological disorder. That's well known and solidly established now, but a few decades ago psychiatrists were treating autistics through psychoanalysis, and blaming the disorder on refrigerator mothers! What a travesty, and tragedy that was!

Autistic children who also have seizures often have them for the first time around the time of the onset of puberty. Over the past year, a number of children that we know in the autism community here in Northern New Jersey, and who are around the same age as Sarah, have suddenly had seizures. So, it happens at the point when parents have pretty much accepted their situation and worked things out as best they can for their children, then, BOOM!, something new.

For us, though, seizures are a very old story. Our daughter had 3 seizures in one day when she was 18 months old. She was put on medication immediately afterwards, and the seizures never came back, and after a few years she went off the medication. When she first had those seizures, she had not been diagnosed as autistic, so that was our first major indication that there was something wrong with her. The doctors who treated her for her seizures never said a word about the possibility of autism, part of the great conspiracy of silence that parents in the autism community often experience prior to diagnosis.

For the record, I wrote about these early experiences in Part Two of Echoes and Reflections: On Media Ecology as a Field of Study.

The Roman poet Lucan said, "I have a wife, I have sons: all of them hostages given to fate." And no ransom is ever enough.

I know people my age, and older, who have no children, and somehow they seem quite youthful--as Indiana Jones said, "it's not the years, it's the mileage." Right now, I don't even want to look at the odometer.


kristina said...

Lance, we're with you. Let us know if we can do anything.

They have to figure out another way to do EEG's without those electrodes....

Kristina and Jim

Lance Strate said...

Thanks, Kristina, and Jim, your good wishes are much appreciated.

Anonymous said...


We too are patients at Hackensack as our daughter Sasha is an epilepitic. I know the boat you are rowing too well! It seems you are keeping a sense of humor which is so important to preserve your sanity. Your daughter will be in my thoughts.


Sarah said...

hi my name is sarah and my brother is autistic and at the age of twenty he just started having seizures they haven't found anything that was abnormal.So tonight I stared looking into the autism and seizures,and found that they are related but when i was reading your story it made me feel a little better to know that we are not the only family going through this.But my brother is twenty four now and doesn't have seizures on a regularly but he did have three in one day and so far thats been the worst. But my prays are with you and your family and I just wanted to let you know your not alone.