I haven't mentioned this yet.
Don't ask me why. I really don't have a clear answer. Sometimes the answer is...just because.
We (meaning Jonathan, myself, Grams...and his team at school) have been noticing odd behaviour from Trevy during the past month.
He's been cranky. He's always so happy-go-lucky. Except when an electrical storm is firing inside.
Loss of appetite. The only time he hasn't been a good eater was when he was seizing.
Posturing. We haven't seen that since pre-surgery.
Staring. Long enough and non-responsive enough that I was certain something inside his head was firing. Short enough...to make me question myself.
Lip smacking. A classic Trevy complex partial seizure que.
Nothing overtly dramatic. Just off. And enough to cause my seizure-mommy-dar to alert. That something could be brewing.
So of course I reached out to Dr. Neuro. Who immediately ran labs and scheduled an EEG. Both Dilantin & Trileptal levels were low. So we increased his meds. I'd forgotten how much I loathe fiddling with meds. I hate the glazed over days while his body adjusts to the increased levels. This time he was floppy too. Falling on the stairs. Just wobbly in general. Reminded me of our Banzel days. It always makes me wish there was another way. Dr. Neuro suggested trying the GI Diet. Evidently there are some studies indicating that it may help with seizure control. She said to give it a go...and only if we find it helps can we discuss weaning a med.
Trevy is on 3 hard core Anti Epilepsy Drugs.
And I am craving weaning him off one of them. I suppose it's because I'm hoping we'll see more rapid developmental progress with one less AED on board. But then...seizure activity stifles development too. And with the recent drug increase...all of the odd behaviours have dissipated. Coincidence? Perhaps. But this seizure mommy ain't buyin' it. And so every morning and night I force feed my son toxins in the hopes of seizure freedom. And developmental progress. I close my eyes to the risks...and hope for the benefits.
It's always risk vs. benefit. Benefit vs. risk.
It's always...we don't know why. We don't know if. We can't predict this. Or that.
No promises in Neurology. That's for sure.
So we speculate. And guess. And trial. And adjust. And repeat as needed.
And it just sucks.
Even on the Healing Side seizures suck. Even the suspicion of.
Yesterday we headed to Hasbro Children's Hospital bright and early for his VEEG. Thank God not an overnight.
Overall he did great. Of course there was...um...dramatic vocal complaining during the electrode placement. But by far the smoothest hook up yet. He understands so much more of his world now. Or at least notices more now. So I was able to distract him for bits of time by reading Brown Bear Brown Bear. It helped having Jonathan supporting us. He stayed until we were settled in before jetting off to earn the bacon.
Trevy was fairly relaxed for most of the five hour stretch.
We watched PlayHouse Disney. And Dora. Read books. And played with button laden toys. And enjoyed being snuggled up together.
Just Trevy and me.
Of course...I did sneak away for a peek at the screen a couple times.
I'm no Epileptologist. But. The pattern looked more organized than I've seen in a looooong time. Not spike free. But organized. And my heart breathed a little sigh of relief.
Dr. Neuro emailed last night.
No seizures were captured. Hooray.
Rare left sided spiking over the motor cortex area. Okay.
Frequent right sided spiking...likely originating from the "blip" Dr. Rockstar noted in the PET scan. Crap.
Dr. Neuro's impression overall is that nothing too alarming was happening. Dr. Rockstar's email advice was to send him a disc of the EEG and keep a vigilant watch on the Right spikes. We all agree that the odd behaviors point to seizure activity. But the meds are doing their jobs. For now.
So we wait. And watch. Backs to the wall. Seizure spotting goggles ever on. Armed with the weapons science offers at this moment in history. And pray like crazy that he'll be safe as he grows into who he was Designed to be.