The developmental pediatrician ordered a few new studies. Will has already had an EEG which was ABNORMAL. I don't even understand what the neurologist was telling me. I look forward to getting the report so I can read it better and hopefully understand. Because it came back abnormal, we will now go back for a 24-hour overnight EEG in January. They will look for seizure activity.
Will is going to see the autism geneticist in February and I assume have a more in-depth genetic study done. The doctor mentioned something about exome sequencing. I hope he gets it done.
Will is getting another MRI of his brain in January to see if anything has changed with his Chiari malformation... or anything else for that matter. The neurosurgeon didn't think it was necessary, but I said: Yes it is. So the doctor agreed to order another one. She's a good one. Plus, Will has hit his head on various surfaces so many times in the last year, I think we need another look. I'm glad for him to do this again.
Will was started on 0.5 mg of melatonin and it is really working well to help him fall asleep at night. It's kinda like a miracle! The only problem we're facing is he wakes up now in the middle of the night wide awake and ready to play. He is up for a couple hours every night at least. I'll keep monitoring this situation and maybe get him some different help. But I'm happy he is at least able to fall asleep now, rather than trash his bedroom for an hour or two as he goes to bed for the night.
Now with a diagnosis of autism Will is on a wait list for the autism Medicaid waiver. The wait list is 6 months to 2 years. Don't even get me started on how I find this to be outrageous. But once he gets the waiver he can get different therapies covered. I get upset because he needs help now. His behavior is getting worse and I hope we will be able to combat it with some behavior therapy in the future.
That's about it for now. Once all the new stuff has been done, I will write more about what we found!
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