EEG update; To be or not to be... it's up to us.

Ok.

So according to the neuro #2+++ "idiopathic staring spells" are common in severe autism and the prolonged episode we experienced after his EEG was not a seizure but rather my Boy's brain shutting down from over-stimulation. Which is the OPPOSITE of a seizure. Okthen.

He felt that Boy's "autistic spells" are mild enough in nature as they occur in daily life that they can be accommodated (rather than medicated) and that it is up to us whether we want the 24 hr EEG. Yeah-NO.

Because of the severity of my boy's autism** (**Cue Boy hiding under exam table and growling) he said that if we decide to do that he would like us to go to the epilepsy center, but again, because they are short and mild in nature, they would likely choose NOT to treat medically, even if the diagnosis were epilepsy. Which they can't be sure it is. And can't be sure it isn't. Got that? Good.

So that's a pretty firm yes/no/I dunno accompanied by a very adamant "move forward with life as you're doing it".

Additionally, (because there's always more and it's always an after thought) previous Drs who were unable to elicit post-rotary nystagmus and patellar reflexes may or may not have been incompetent. I didn't share this diagnostic opinion with our pediatrician (who rotated under neuro #2) when we updated him yesterday. I'm thoughtful like that.

So.... odd reflexes that come and go? Who knows. Epileptic? Who knows. Idiopathic staring spells are 'best guess' by a highly revered Neuro? Um... ok.

On with the show.

#EEG

#SunnyDayBeatsTheEEGBlues

#Jeez

 

+++Neuro #1 said that despite his obvious Challenges (cue Boy licking my shirt and rubbing his teeth on my arm) we are doing an amazing job and to keep up his therapies.

New words

He spaces out.

We all know it. Me. The Grands. The Uncles. It's just one of his ''things''.

We just wait a few seconds while his eyes grow wide and then one of us touches his cheek or says his name and waits for him to see us again.

Cuz he's spacing out.

After all the exhaustive behaviors this has always been the least worrisome.

Until our (very nice) new Dr. Man addressed it. He was worried. His expression changed. He looked at my boy running around the office, flapping his hands and squealing. And Dr. Man said the word.

"Seizures."

"Petit mal seizures. Zone out seizures."

And that's not even all of it.

All that screaming, chest arching, arm thrashing that has woken me up hour after hour at night for years? Maybe they aren't night terrors after all. "Sleep seizures." Who knew there were so many kinds?

"Have you had an EEG done? Do you want it set up right away?"


My boy didn't become a different person with "autism, sensory processing disorder, impulse control disorder, AD/HD, speech disorders, neurological and musculoskeletal disorder" anymore than he did when Grandpa called him "B" instead of "Boy". He's the same boy he was before all those words came along; he just has more people helping him.

If only they ALL fit on that shelf! Problems, problems.

After almost five years into my adventure in mommyhood, adding one more log on the fire doesn't really change much around here; Boy is playing Legos so I am pouring myself out to the internet. Same 'ol, same 'ol.

And tonight I will do what I always do at night when new words come into our lives, just as I have with the ones that have come before; I'm going to remember that new words are just new words, and we only need new words so we can address them and help my Boy get on with life.

So here's to new words.