Brain Injury after Tonsil and Adenoidectomy - Need Pediatric Neurologist and Other Advice, Please

[Anonymous]

OP - first of all, my heart goes out to you. I cannot imagine how frightened you are right now. I am a former medical malpractice attorney (patient side) so I agree - get the records right away - from your child's pediatrician, the ENT surgeon's office, the hospital itself - which should also contain the surgeon's report, and any films and x-ray reports that have been done. Get your son an appt. with a peds. neuro - probably at Hopkins - as soon as possible, if only to set your mind at ease and figure out what's going on. But I would be remiss if I failed to mention that it is still entirely possible that his current problems and his surgery are two completely separate issues. My brother had those exact same types of seizures as a child (and apparently, my father did too as a child) and outgrew them with no ill effects. I remember how scary it was when he'd have these sort of trance-like seizures but they passed and he's fine now.
Anyway, I wish you ALL the best and best of luck. Please keep us posted.

[Anonymous]

This is the OP, thanks to you all for your comments. It is true, I am terrified. And, I feel so constrained by the system. I have calls into 5 pediatric neurologists, and am trying to get the earliest possible appointment. I am on the waitlist for cancellations tomorrow. The processes are excruciating. For the hospitals (including Children's; I'd go there if they'd see us first), there is an intake and evaluation before we can even think about the Video EEG. I just can't wait. Thankfully, if I can even use that word, his absence seizures are brief. Though I know there are many conditions with similar symptoms, the abrupt and measurable changes before/after the surgery must mean something about that procedure is to blame for his new conditions. None existed prior. I am certain. I've held my son while sleeping and watched him sleep so many times. After the surgery, things were different. Besides the first disturbing symptom of twitching through both REM and Non-REM sleep, there are other symptoms, too. He takes at least a half hour, sometimes an hour to fall asleep. When he does shut his eyes to sleep, it is as if he wants to keep them closed, but they flutter/ and he can't close them. So, he opens and closes them a few times before he falls asleep. He has nightmares (which I assume is a memory of the surgery), and is afraid of shadows. He was really a fearless little boy before. Initially I thought the fear of shadows was a developmental thing; but, after listening to the things he is telling me, I think he might be seeing spots during the absence seizures that he calls shadows. It seems the seizures may occur when he sees light patterns. But it is so hard to tell. I've done so much research to try to figure it all out.

I do hope that he outgrows these symptoms, but as a mother I will always worry and regret this surgery. Right now I'm worried about the symptoms I can observe, but what may have happened to his little brain that I can't see?!