An Uncertain Independence Day

So, today, July 4th, is my daughter's own independence day, as she was released from the hospital and is back at home (see my two recent posts, Autism and Seizures and Seizure Synchronicity).

Night before last, she had to stay up the entire night in order to take a sleep deprived EEG the following morning. Here's what it says on Web MD:

To detect certain types of abnormal electrical activity in the brain, you may have to be asleep during the recording. As a result, you may be asked not to sleep at all the night before the test or to reduce your sleep time to 4 or 5 hours by going to bed later and getting up earlier than usual. If your child is going to be tested, try to keep him or her from taking naps just before the test.

So, my wife stayed up with her, and it wasn't much of a challenge for my daughter to stay up, more of one for my wife. Anyway, the results were inconclusive. They saw some abnormalities, but nothing major, neither at that time nor for the rest of her stay--she had the electrodes glued to her head, covered by a bandage, for the duration of her stay, except for a few hours in the early morning of the all-nighter, when my wife dozed off and she pulled a few of them off.

If they had seen spikes, which are associated with seizures, on the EEG, they would have put my daughter on medication, and of course they would have is she had had an actual seizure there. But with only some abnormalities, whatever that means, the neurologist recommended forgoing the anti-seizure medication for now. We're fine with that, since the medication does have side effects and can interfere with learning. Our daughter was on the stuff for a few years following her 3 seizures at the age of 18 months, and it certainly didn't help her working with her teachers.

We did get a prescription for medication to give her in case she has a seizure. As it turns out, it's in the form of needle and syringe, which is a little scary. The idea is to administer it while waiting for an ambulance. And if she does have another seizure, she will definitely go on the medication.

The other recommendation is that she have a set bedtime that we observe religiously. She can go to bed earlier, and the bedtime can be as late as we like, we just are not to let her stay up past that point. In point of fact, my daughter has very irregular sleeping habits, another characteristic of autism, and sometimes stays up most of the night.

I was on my way to pick up my wife and daughter from the hospital when there was another incident. As I understand it, my daughter complained of a tummy ache, and then suddenly acted strangely, like she was out of it, drugged, or sleepwalking, kind of like when we found her on Friday morning, in the aftermath of her seizure. By the time I got there, she was back to normal, and when an internist and doctor finally came and took a look, there didn't appear to be anything wrong with her. They called the neurologist as well, but there was nothing to do.

And so, we brought my daughter home, to an uncertain future, or rather, a future that's become even more uncertain than before. But she was begging to go home from the hospital for days, and she is so very happy to be home now. No fireworks for her, she hates them, they totally freak her out, just a quiet night at home, and anyway we've had more than enough excitement and interesting times. And, if she's up for it, she has school tomorrow.

And thanks to all who wished her (and us) well.