No 3 day overnight video eeg trip to UCSF today. I spoke with the Doctor on Thursday and we decided to push it off a while until it's more urgent and necessary. We were going to try and distinguish what the startle, shriek out episodes he has when he sleeps are.
As much as I'd love to know what they are, I'm not comfortable with the harsh industrial strength glue they will be putting on to his scalp for 3 days. Last time they did it, he had a bad reaction to the glue at Stanford. He had burn marks and welts and they take this glue off with pure 100% Acetone!
No!
I had to cut it out of his hair in spots so if this video eeg is not absolutely critical, I'm not going to put my little autistic child through that. It would be 3 days of pure hell for him. It's hard enough for a child to be in the hospital, out of his element but when you factor in his autism and being scared and uncomfortable with all the wires hooked to his head, it makes it that much worse.
They can use a water soluble, gentler glue if they WANT to. Sure it might not stick as well; but they need to be more flexible and accommodate the needs of each individual child.
So the doctor thought, as did I, we should wait and see what happens...see if they get worse. It was a relief even though I would love to know what happens to him when he goes to sleep. And, sometimes, you have to do what is best for your child. I hope I made the right decision.
He's much happier being home in his comfort zone. Just look at him.
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I agree with your decision. I made the same one. I get tired of my son being a science project.
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