When I first found Seizure Tracker I thought it was an AMAZING tool...

thus a post ages ago.

But that was during Trevy's seizure free time. So I never had a chance to use the tool myself.

And ever since Trev's seizures returned...ummmmmm...

I've kinda been a seizure tracker slacker.


Especially considering there seems to be no consistency.

For instance...two days this week (including Boston day) we only saw at the most three clusters. And I'm such a sucker too. Cause my heart skipped a beat when we learned that Trevy's put on two pounds! Coming off the Zonisamide has been eye-opening on many levels. Including just how much his little appetite had been suppressed! I was beginning to doubt his smidgen of Italian! So with two extra pounds in play...and only three clusters at most...what else could we do but bump up on Vigabatrin?

And then yesterday?

Attack of the seizures.

I kid you not...during his one hour of OT...Trev had at least five clusters. With at least five seizures per cluster. The math makes me just wanna crawl back in bed and bump up my newly philosophized 3DR (three day rule) to like a 20DR. Minimum.

But instead...I rolled outta bed. And dragged my no-doubt-I-have-a-smidgen-of-Italian-bootay to the computer. And finally...revisited that AMAZING tool. Only this time with seizures to track. In my cozy jamies.


Carolyn M said...

Oh Honey, I'm so sorry. I wish I could hug you. It's funny how words don't change the reality of your situation, but it totally changes the reality of your situation... LGS is always my greatest fear.

I know what you mean about eye-opening you get coming off a med. We did a similar thing with topiramate. We didn't realize how much it was supressing her appetite or her cognitive function.



~Mama Skates~ said...

sometimes that's all u can do - roll outta bed & keep on, keepin on! luv u sweets!!! xoxoxox, sharon

Shanna Grimes said...

Yes, this is a devistating dx, but he is the same cute little curly top he was three days before seeing Dr. Boston. Also, you never know. He could be completely wrong about this dx. If I trusted everything the docs have told us...sheesh.

Hang in there, honey. I know this stuff is tough. I try to think back to when we first found out about Javi. That grief process that you go through. It is like mourning for all the hopes and dreams that you had. Here's some food for thought though, what kid ever turns out exactly the we envisioned them to be?? I know this is different, but it's what makes me feel better when I think of the future for my kids. It was like a blow to the stomach with each one of them, but it did get easier over time. Time has a funny way of healing everything.

I like the three day rule, NOW GET YOUR BOOTAY OUTTA BED!! Love you girl!

baby trevor's mommy said...

Thanks girls! Love you all TOO much! And you're right Shan...he could be wrong. I keep reminding myself that...cause actually he told us we'd never see IS again. And we did... Plus...I can't shake it that Chugani said he feels Trev's IS being more right sided is indicative of foci. The whole PVL thing has thrown everybody for a loop though.
You're SO right too about kiddos. In fact...it's funny how I've tried so hard with Toby & Bri to not have expectations and let them just grow into who they are. Because who they are is still close to who I want them to be. But with Trev it's just been a harder journey. I think I'm beginning to understand more fully the Hope of Heaven...ya know? That some day Trevy's little body will be freed of sickness...and if his little mind is affected here - it won't be There.

But I better stop before I get a Jesus Freak label! *wink*


Mmmmaaahvelous said...

Dear Sweet Jesus Freak, :)
Your hopeful outlook and ability to have a 3DR while not giving up on your magical son, and the other superstars of your family is inspiration to us all.
Thank you for sharing your journey, plight, feelings, smiles and enlightened freakiness!:)lol
Your wacko Canadian friend,