Hayden had an routine follow-up appointment with his neurologist today. Of course, one of her first questions is if he's had any seizures. We described to her the things we've seen that may be seizures, but we just aren't sure. From time to time, he stares and we can't get him to respond to us. There are also those sudden uncontrolled jerks of his arms and legs that always worry me. That's how the infantile spasms started. Since there is only one movement, I have no way of knowing if it is more than a jerky movement caused by his cerebral palsy. Finally, there is the ever puzzling issue of Hayden vomiting almost every time that we wake him up (no matter how slowly and gently) or when he is startled awake.
We also expressed our concern about his hips. She was able to see that we could not get his legs down far enough to touch the seat of his wheelchair. This is happening more and more lately. We are very worried. Even more concerning is the way his lower left leg rotates in. I've tried to imitate it, but can't. Guessing that that is not a good sign. His neurologist was glad to hear that we have an appointment with his physiatrist in a couple of weeks.
Since Hayden is having all of these "suspicious" movements. She wants to admit him to the hospital for a 48 hour EEG as soon as insurance approves it and as soon as EEG is able to fit him in. My guess is that we will be there the entire 48 hours since he will likely not do a single one of the things we are there to check out.
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