This is one of those posts I'm writing more just to for myself than anything, to record while it's still fresh in my mind how things went down. I'll start by saying that Janey should be fine, that we don't think know she actually had a seizure, but that we had a scary night and she is still pretty sick (she's fast asleep next to me as I write)
The night before last, Janey slept almost not at all. She finally went to sleep about 2:30 and woke at 4:30. She seemed fine when she woke up, as she often is after not sleeping, and I decided to send her to school, as she has often done well at school after not sleeping. And I need a nap. So off she went to school.
Her great teacher emailed me several times during the day, telling me that Janey was very sleepy (I had written her to let her know how little Janey had slept). They woke her for lunch, but she was angry about that, and woke her again for the bus, and I guess she got furious then.
When she got home, I realized quickly she had a fever. She very, very rarely gets sick, and when she does, it's usually a mild cold. But this was quite a fever. Her temp. was going up and down but around 103-104. I gave her Tylenol, and then decided to call the doctor on call at the Lurie Center. This was because the medication she had started taking (and which we are now taking her back off, Abilify) has a rare side effect of high fever and stiff muscles that can be very serious. I talked to a nice doctor who said it didn't sound like that is what she had, and to see how she was in the morning.
Janey slept very, very sounding all evening. So soundly I got nervous, and tried to wake her by loud noises and then putting some water on her leg, and finally did wake her enough to have her have a drink and to see she was still lucid. But she was certainly sleepy.
At 2 in the morning, Tony woke me up. He had checked on Janey and she was shaking. The shaking was like nothing I've seen before. It was rhythmic, and just in her right arm. As I watched for a few seconds, it seemed to spread to her leg now and then. I decided to call 911. I wasn't completely panicked, as I know fevers can cause seizures and that autistic kids are at a higher risk for seizures, but I was scared.
The ambulance arrived quickly, and the EMT saw the end of her shaking. It had gotten to be less by then, and they said it didn't look like a seizure, just shakes from a fever. Janey and I got in the ambulance and I asked them to take us to Mass General Hospital, as that is the hospital associated with the Lurie Center.
In the ambulance, Janey was very, very hot. To cool her down, they put an ice pack behind her head. Her oxygen levels weren't great, and they tried to give her oxygen, but she pushed it away violently, which was actually kind of good to see.
Mass General has a little section of their ER just for kids. It wasn't busy, and we were seen quickly. The resident who saw us did a basic check on Janey, but Janey wasn't having any part of having her throat looked at, so she decided to wait to talk to the attending doctor to see what to do next. When that doctor came, he attempted to look at her throat also, and she went crazy. They called everyone in, and finally, after a few attempts with six adults holding her down, they were able to do a throat culture, which came back negative for strep. They made the decision not to check her urine, as since she is not toilet trained, that would involve a catheter.
We were of course most concerned about what we thought was a seizure. The doctors said that usually after a seizure, a person is extremely out of it, and that was not the case with Janey. She talked to the EMTs---actually talked to them amazingly well. I was grabbing my pocketbook as they took her out, and the EMT told me Janey asked her "Is my mama coming with us?" I can hardly believe she said that, as that is an amazingly direct and clear question for Janey, but the EMT had no reason to not tell the truth. So the doctors said that probably we had seen the shakes from the high fever. They told us if Janey ever appears to have a seizure again, to film it. I must admit I wouldn't have thought of that, and kind of laughed to myself as I had written recently about not taking Janey's picture during bad times. I'd see a possible seizure as about the worst time ever for picture taking, but obviously it would be for a medical reason!
So we were discharged, with the theory that Janey has some kind of virus. She is still extremely, extremely sleepy, but the fever is gone.
I have to admit I still feel, at the back of my mind, that her shakes were not just regular shakes. They were different. But I was very clear with the doctors about what I saw and that I felt they were not fever shakes, and the doctors listened respectfully and were very confident she had not had a seizure. I am not a doctor, and I respect their opinion. But I am a mother, and I do still feel I have some questions. However, even if she did have a seizure, having a seizure from a high fever is not unheard of, and I don't want her subjected to any major workup unless it happens again.
So...here we are. I'm waiting for Janey to wake up and be more lively. I hope she does soon. I'm tired out of my mind, but overall, pleased with the care she got. You could tell the doctors and staff at Mass General had training in autism. It made a noticeable difference as compared to our last ER visit.
Thanks to all of you who made it this far for listening, and as always, for your support!