Thursday morning, Drew suddenly started crying. Then it turned to screams. He threw up a little, and then he started drooling out of the left side of his mouth. His speech became slurred, and he kept touching the left side of his face and his chin. This lasted about an hour. We took him to the doctor at 10:30, and he was behaving normally. The doctor said it sounded neurological, because he could find no signs of infection. He kind of suggested we wait it out, and see if it happened again.
Well, it did. It happened again on the way home. We were almost home, and he started the screaming again. I got him out of the van, and he was drooling again, and his speech was slurred. He was almost sleeping standing up. I put him to bed, and got on the phone with Dr. Berry-Kravis, our ped. Neurologist and Fragile X Specialist in Chicago. I left a message describing the situation. She called me back, and said it sounded like partial complex seizures, the most common seizures people with Fragile X have.
He had another one at 5pm, and around 7pm. And another first thing Friday morning. We took him to Children's Medical Center and had an EEG done. They are supposed to be sending the results to Dr. Berry-Kravis, and she said she'd let us know as soon as she reads it. The EEG was stressful! We had to wrap Drew up in a sheet and pinned his arms down at his side. Mom and I had to lay across him. I am so glad Mom was able to come with us, because she entertained Drew while he had to lay still for 23 minutes. She kept saying, "P-U, Drew, stinky! What's that smell?" And he made her say it over and over. 800 times, or so. :) Anyway, he survived it.
So far today, and the rest of yesterday, there has been no more of them. I'll keep you posted.
Saturday, June 9, 2007
Seizures + EEG = No Fun
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4 comments:
Oh I am so sorry you've had this happen, I hope he is okay and that it is something that either won't happen again, or can be controlled somehow. My thoughts are with you.
I hope things get better soon and you find an answer or a med to help him with this. Seizures are one of my worst fears because of all the medical involved and how much our FX'ers don't do well with that. My prayers are with you. Keep us updated.
My prayers are with you, too. David had one at about 8 months old while he was at school. It wasn't as involved as Drew's, though. It was a "staring spell." And he hasn't had one since--that I know of. The EEG was awful. He screamed the entire time except for a few minutes between the time they stuck all of the wires to his head and the time they turned the lights off. Like cws said, it is one of my biggest fears. Even though I would know in my head that everything is OK, that I should just stay calm and wait it out and that he's not in pain, I would still lose it. My heart aches for you.
Oh, how scary! My kids haven't had one yet [knock on wood] and yeah , that would be really hard to handle. I hope dr B-K can help you.
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