seizures and snaps

I've been hoping to capture a more right sided cluster. To show Dr. Rockstar. This did not end up being very right-sided...but Trevy was so extraordinarily amazing that I wanted to share it. How can he smile? And no wonder I don't much. How can he be SO sweet? He's amazing...all these little courageous kids are amazing...

The video is actually in reverse order...with the cluster first. And the pre-cluster aura after. The music transition is the que. I was tempted to not include the pre-cluster video...but he was smiling and just so beautiful that I had to! The ques he gives are VERY subtle. Well...not to me. I'm really just saying that for your benefit. His little face muscles get tight. And he will start picking and becoming quiet and focused. And it's the weirdest thing...but after the cluster passes he's always starving?

This cluster (1 of 6 clusters so far today) was on the milder side. Although you'll see him lose his balance a couple of times. And if you listen closely you'll hear little breath in-takes a few times. For the non-seizure viewers...each time his arms lift and his head moves forward is a single seizure. Infantile Spasm seizures are in the myoclonic family. Which involve very quick jerky movements. There were a couple eye-rolls as well. Very miss-able to the untrained eye. Pre-Topomax a cluster like this would have thrown him violently backwards to the ground. Which probably explains why I'm feeling okay with seizure relief...ya know.


JSmith5780 said...

If he can stand through them, then the Topamax is definitely helping.

hug the cutie... I think he can snap better than me :)

baby trevor's mommy said...

He was actually a little post-ictal after this one. He's not always. But he just wanted me to rock him...and I flipped the tv on...it was Thomas the Train. Made me think of you! *smile*

And that snapping is TOO much! Toby & Bristel have been trying to snap...and just can't figure it out. Trevy on the other hand has taken to point & snapping for what he wants! lol

He's amazing. I feel SO lucky that he's mine.


Adesta said...

Aw D, Trevy is such a loveable kid!! I couldn't help smiling a sad smile while he was smiling through his clusters. That's one heck of a strong kid you have there D.

I think he may be so easy about it because you aren't getting crazy while they are occuring. At least in this video anyway.

And I swear, it sounds like he was trying to say you were pretty at the end there....

And I won't tell my oldest that Trevy can snap his fingers, she'd be so jealous!!

brendalynn said...

he is sooo fricken adorable! he looks like hes gotten taller since last time i saw him. :]]] <3333

MJStump said...

why is it that i am crying after seeing your beautiful trevy's smile? because it breaks my heart to see him go through this..for you all to go through this.

makes me think of when kylie had her seizures...im scared they will come back, and i dont want to see them ever again. no child, no family should have this to remember.

trevy is adorable..those big beautiful eyes, and that sweet smile! give him a big hug from us..you get one too :) snap snap..that is too cute. those are the things we should always remember..the things that make us smile too.

blogzilly said...

Well, I almost made it through the bulk of the day with no tears. This disorder is just a bunch of bullshit! I hate it.

The slight widening of the eyes, interesting pre-sz thing that happens, same with Bennett. I can now, if i am watching, know around 1-2 minutes before a real cluster digs in that it's coming.

Thanks for sharing the vid...I think it is very important for all of us to share the events and see how some relate to others and so on.

But oh man...how I do hate to see this happening to anybody. It's just cosmically wrong on so many levels.

baby trevor's mommy said...

Adesta...yeah the snappings driving Toby & Bristel nuts too! Totally impressing all Trevy's therapists though. (smile)

Brenda...I think it was the overall effect?!

Jody...I know sweetie. And it's okay...everything I mean. It's okay to be happy that your munchkin is seizure free! And it's okay to feel like if you ever see seizures again you'll vomit! And it's okay to cry with me. In fact...thank you for crying with me. I can tell you, sweetie. I thought I would retch if I ever saw spasms again. But our transition back into IS was painful...but not as scary as I thought it would be. And I can tell you...that Trevor amazes me all the time! My heart is broken...but I still feel like the luckiest girl around. Cause he's MY seizure boy! (hugs)

Ken...I couldn't agree MORE! Comparing notes is one of the most practical...and educational...things I think we can do for eachother. The fact that you NOTICED his eyes widening astonishes me. And tells me that there are significant similarities with our boys. Makes it easier for us to connect. And hope. And worry. And try. Ya know. Anyway...all that to say...agreed! Sorry I made you sappy though. But he is just having a beautiful day. As in the soul...and not the seizures.


brendalynn said...

prolly. but i can say ive watched it 4 times already.. and it is crazy how he can be all smiles even with the seizures. strongest little boy ive ever met. <33

Melanie said...

uuugh. When I was watching the video I am just in awe on how adorable he is. Then the sadness sets in because the frickin' seizures. They are so hard to watch. Some people who aren't familiar with it might say well they don't look THAT bad, but if they only knew how they seem to last forever and ever and there is nothing we can do to stop them.How they rob joyous moments from us. My heart breaks watching such a beautiful little guy have to go through that. His smiles and those eyes....he is just beautiful.

baby trevor's mommy said...

Melanie...funny you should mention that. Cause I was thinking just today that I wish they were as innocent as they look. And how somehow when he cries with them...especially in front of people...I feel not happy. But validated. Because they see the anything but innocent side.

Anyway...thanks. I'm a lucky mommy...to get to hug that munchkin as much as I want! And btw...Daniel has soulful eyes too. Like somehow they share some special secret...that noone but those in their "club" get.


Abbe said...

thanks for sharing this danielle! y'all continue to touch my heart! i think trevy's smiles, despite seizures, are a reflection of how much you and j love on him, try to give him a normal life, and reassure him that the seizure monster WON'T win. he's just a little guy, but he KNOWS. xo to you all! :)

Anonymous said...

I know I'm melting (referring to the post above).


Hua said...


That is one cute kid! Thanks for sharing that video. I would never have known that he was having seizures, with all the smiles. He does seem like a very strong boy!

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