Wednesday, February 5, 2014

Our Special Needs Journey: Part 7 - Seizures?!!!

I live for moments like this. This was another busy day -here I am with just my boys.  Dean, enjoying lunch in the car between his OT appointment and preschool, is playing peek-a-boo with Bruce.  Their mutual laughter fills the car with delight and I turn off the radio to enjoy the sounds of glee.

I am on my way to Mommy-Baby class with Bruce when I get a call on the results of Dean's EEG on Friday.  (You can read more of Dean's story here.) That was a rare opportunity to spend time with just Dean, too bad it was for a test to determine to what extent his staring spells have been the result of neurological issues.  (I can't get technical here because I don't really understand all the details and am way overwhelmed and sleep deprived these days.)

My little guy loves numbers, letters, and colors. So I picked up this reusable book about numbers where you "paint" with water.  That book was a lifesaver during the test - this mom knows her kiddos well!

The nuerologist initially thought that Dean's frequent night-terror-like episodes were not a contributing factor in his increasing staring spells.  Although a sleep study should be done to rule out any possible issues, the night terrors were likely not a huge concern.  However, since seizures and autism can go hand-in-hand, and there has been some regression with his skills, and the "dissapear and no idea where he goes or what he's thinking" instances were occuring more often, an EEG needed to be done.

Getting all this goo in his hair, hooking up tons of wires with stickers on his head and chest, wrapping his head in gauze (totally looked like a mummy), and getting him to sit still for 45 minutes required some creativity, but that number book sure helped! [So I forgot to take a photo while he was all hooked up, since he was in my lap and the phone was not, but I did manage a snapshot of the hair goo - think warm candle wax.]

The worst part was actually trying to wash his hair out afterward- he's got some pretty major sensory issues with that.  He may dump water on his head in the bath for the sake of comedy (he does it to make Bruce laugh) but this was NOT the same!

Back to today's call: abnormal activity on the left side of the brain indicating the night terrors are, in fact, seizures, and that all the seizure activity has caused damage.  Finding out to what extent and how we will treat and prevent the seizures is our next step. I know the nuerologist prepared me for this, but somehow I was optimistic our family is already facing enough challenges and God would give us a pass on this one.  

We're scheduled for a sedated MRI of the brain as well as an ambulatory 48 hour EEG where he will come home on all the wires and we will try to capture one of his episodes for the computer.  I'm eager to get solid answers and minimize further damage if possible.

As I look at this precious, happy, silly boy my heart breaks. I have supreme confidence God is with us in this journey and has plans for this child, but I am scared of what might come next.  Life doesn't always look exactly how I'd imagined it would "when I grow up," and yet, I can no longer imagine a life without cars sorted by Disney character or by size or color. Why on earth would you ever want to drive them around when you can count them?! :)

Since Bruce (our just-turned-one-toddler) has very similar nighttime episodes, is showing some signs that caused concern, and has a family history of autism, he also will be needing an EEG and sleep study.  His EEG is this Friday. Would you please be praying that his results are not as devastating as Dean's and that we are able to get a treatment plan in place for Dean quickly? I so covet your prayers and am grateful for them!