We had our long awaited appointment today with the pediatric neurologist for Noah.
I loved her. She was patient and spent over an hour with us. Noah wouldn’t let her near him but she was able to assess him a little by watching his behavior and by watching us interact with him. She basically took a lot of info from me, and from his IEP, progress notes and a letter from his home teacher about her concerns.
He’s got a lot of testing ahead which I’m anxious about because he has severe “white coat syndrome” and I hate seeing him so terrified.
He will need a brain MRI, urine test, lots of blood work to test chromosomes, lead, gluten sensitivity and more, and an EEG. How are we going to get 20+ leads on to his head, and keep them there long enough to get some feedback??
We will have to sedate him for the MRI so we decided we will have them put the leads on his head for the EEG while he’s sedated. And pray that he doesn’t flip out when he wakes up.
The dr wants to see if he has seizures while he sleeps that may be interrupting the brains ability to remember things that he has learned when he’s awake.
Because his Autism was a regressive onset ( he was developing perfectly up until 18 mos) she said there’s a possibility that seizures while he’s asleep could be the problem.
There’s no way to know by looking at him because they wouldn’t be the type of seizure that causes convulsions but they may be interrupting his sleep. Hence, the 2am wake up on most nights.
So, that’s what we are up to these days
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