Wednesday, August 09, 2017

Alex’s Neuro Appt

With his recent seizure activity, they had us come in today.

Yes, it is common to have seizures during sleep.  I need to make a HUGE point of getting his seizure med into him before he goes to sleep.  Yes, seizures can look horrible as the little ones turn blue.  And yes, kids with autism are EIGHT times more likely to die after a seizure than the rest of the population. 

Death chances increased + seizing at night = something else for me to worry about!

We are going to do another sedated EEG in a month to see if this dose is good or if we need to go up.

Interesting thing – some of his misfirings in his brain are in the left temporal lobe – right there by his speech center, which doctor said might explain some of him being non-verbal still. … he is so interactive with people, and sweet….  But if his brain is misfiring right where expressive speech is controlled………..he’ll be nonverbal.  Prediction for future…..we may only get 20 words or so.  Sigh.  But controlling those misfirings may help in that department.  As with all things seizure related, we’ll just have to wait and see.

I was thinking of my friend and my nephew who have both recently had surgery to remove the parts of the brain that were causing their seizures, but we have multiple points, not just one or two.  Sad smile  Oh well.

On a happy note, making his follow up appointment, I realized Kai will be home by then!

Thursday, August 03, 2017

duPont Manual High School

Big day – orientations at both Manual and YPAS (Youth Performing Arts School).  Lizzy is excited (and nervous)!  Here’s to a great year!!