to read an EEG

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.


Anonymous said...

so sorry Danielle. I know that hits smack dabben right in the heart. I will ramp up my prayers for that amazing little guy....
Marcia K

Debbie said...

gosh I am so sorry you are still seeing those monsters trying to break through...I know it must be such a fine line with meds and opportunity for growth.
We have NO choice but to saturate with meds...altho i often wonder what he would be like if we stripped it all away!

I also didn't realize he was still on 3 AED's ...I imagine you cut away the seizure-part of the brain and you hope to cut away everything else related to seizures...right?
OH if life only worked as we imagine it to...you guys are in my thoughts and prayers!

Lisa said...

Well poop. Glad the meds are doing their job but I hate that our kids have to cope with their side effects. And 3 meds? Really sucks. Glad the EEG is over and hopefully Dr. Rockstar will have some ideas.

Adesta said...

As I said on FB last night, I'm just glad that you all had enough good news for a celebration.

Quick question that I thought of reading this post....since I know Toby and Bri are ever vigilant and protective of Trevy, do they ever notice any of these little quirky things happening and say something to you or J?

Dawson said...

Hope the meds continue to do their job.. although.... I too hate the meds, and sometimes wonder if they are not worse than the seizures themselves at times.. Of course I know the correct answer, but we all hate the damned if you do, damned if you dont scenerios with these kids. Hopefully all this will be a non issue soon

Anonymous said...

"Armed with the weapons science offers at this moment in history."

You definitely have perspective.

Thanks for the update. Glad he is better.


MJStump said...

Ughh...is the first thought that came to mind. I so badly wish and pray that Trevy's seizures are forever gone and there are not little hauntings of them.

It's like it pushes pause in your healing process. Healing from anything so big is never quick and straight of a path, but it would be nice to have less turns and forks in the road to helping your heart and soul recover.

Love Trevy's haircut...glad to see he still has some curls bouncing around with his smile :)

Sending much love,

KC's Mama said...

Ugg...my heart broke for you when I first read that you were seeing seizure behavior. What you described in this post so accurately describes the battles we go through with KC. Meds v/s seizures. All the while he is loosing ground. He was pretty well off to begin with, so we had a little wiggle room, but now we are stuck. Every decision we make about meds is a risk to development regardless of how we choose. And it really sucks. At least now we have the autism diagnosis so he will be getting full time, ABA therapy at an autism school.
Ok,sorry I went off on a tangent!
Praying for you.

Anonymous said...

Crap, hope Dr Rockstar has some ideas, and that maybe the GI diet helps.
I know what you mean about the drugs, H is just on one now and i'm pushing to try and wean soon, if it's doing something then fine, but if not i don't want to keep pumping it in him.

Sympathies, kt x

Colby said...

So sorry, Danielle, that there are still some lingering behaviors....We will pray that the increase in the meds will help...I can sympathize SO much with the amount you are giving him.....I LONG for the days of only Tegretol! Now it's down to Trileptal, Banzel, Keppra and Clonipin....I had trouble with the Topamax decreasing Colby's appetite...Of course, it didn't help with the sz. anyway...

Oh well...I guess meds are all we have....Even AFTER surgery....Hopefully, Trevy will continue to have less and less "activity" as time goes on...Perhaps his brain is still adjusting...

Try not to be too discouraged...and I know you appreciate how far he's come already!


joanne foltz said...


Mrs. M said...

Many hugs coming your way.
"It" just never ends, does it? Always something pressing on the horizon...teasing...trying....
Thankfully you are amazing and see more than meets the untrained eye. You're a star Danielle and Trevy is so blessed to have you as his momma.
Hang in there sweetie.

Holli said...

After all you and Trevy have been through, I know how much you must yearn to have ALL of the seizure related talk and speculation behind you. I think brain surgery should qualify as an automatic removal from ANY and ALL seizure worry, right? Praying the meds continue to keep anything and everything at bay...as much as these meds do suck.

Here's to hoping the "blip" is nothing more...than a "blip".

Big hugs and prayers to the Foltz fam!