Aug 31: Cluster of Seizures

Was just upstairs working on a project when I got the absolutely clear impression to get downstairs for a specific gold and silver paper I needed. Weslee was downstairs kinda eating, and was about 5 minutes past pill time so I grabbed them and headed downstairs. As I handed him his.pill container, his eyes glazed over while he started twisting to the left.  Over the next 5-10 minutes, he had seizure after seizure. Hard to get pills in him when he is seizing, but we finally did.

Most of the seizures were that wiggle worm followed by gelastic.

I put away the food he had not finished and walked upstairs with him. Barely got to his safe space (bed) when another hit.  After another 3 seizures in 5 minutes, I gave him a dose of his rescue nasal spray (which he hates. It is now nose-pain vs nasty-taste .. anybody have a solution?).

Hoping that spray kicks in soon.

Poor guy.

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Weslee needs more brain surgeries for his seizures.  To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop .. Thank you.

Apr 26: Last Night's Seizures

Last night, Weslee had a cluster of seizures. Gelastic, I think. I recorded what I could.  Here are 4 of the recordings.

Ignore the mess, please. I was more focused on my son than my deficits of cleaning skills.

Part 1 of 4:

Part 2 of 4:

Part 3 of 4:

Part 4 of 4:

Thank you for taking the time to see Weslee go through seizures and the after effects.

Note the difficulty he has talking and even thinking. The brain goes "Huh? Blibbity rootery pibble boo."  Uh, brain reset, please.

It is hard to watch.

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Please help with Weslee's medical and related expenses, then share the link(s) everywhere. Check out the GoFundMe ... https://www.gofundme.com/f/r8wuy7-help-weslee-and-family-with-medical-expenses

Here is the GoFundMe tiny URL: https://tinyurl.com/bdccbkpj

...OR...

If donatìng through PayPal is easier... Click here.  

Thank you.

Another Cluster of Seizures

Weslee was downstairs, trying to eat while on the phone with his friend. I was upstairs being miserable with a health thing. I suddenly heard W having a gelastic (laughing) seizure. I called his name several times, msking my way downstairs. He would have answered if possible. 

The cluster didn't last long ... 10 minutes or so, but the seizures kept rolling through. They were mostly gelastic but a few of his "wiggle worm" slipped by.

I gave him a rescue med (I have them stashed everywhere here st hime and in my purse) then got him upstairs to his 'safe space' when I could.

This vid shows him about 10 minutes after he hunkered down in his safe space... his bed.

https://youtu.be/35wiTYmb6ko?si=cHh6ieJfnHycmnYK

ETA: W has had several more seizure cluster by now (4:40 p.m.). He is trying to stop them by pulling at his hair.  His brain can't be reasoned with when in this state. My sweet boy.

A Cluster of Seizures

Every time Weslee's seizures slow down, I feel a glimmer of hope. Maybe we are accidentally doing something right. Maybe he is avoiding a food or action that contributes to his seizures.  Maybe.  Maybe. Maybe.

Wishful thinking. I can hope and wish and desperately desire the intractable epilepsy to become manageable. Or just gone.

I must relegate it to dream status. Or a wish.

Yesterday reminded me. He was on the phone with his one friend while I was upstairs getting ready to go down for lunch. I heard the first seizure, and before I could run down the stairs, he had another. And several more. In between, we struggled to get an emergency dose of meds in him.  It took a few tries because he has troubles making the water bottle come up to his mouth, and then trying to swallow. I (strongly) suggested to his friend they pick up the chat later, and luckily that young man understood and agreed.

I got Weslee up to his "safe spot" (his bed). The cluster finally abated, leaving him so tired and irritable.

These weren't all gelastic seizures. I saw a 'wiggle worm' and a couple other ones. Still, even though they weren't tonic clonics (grand mal), they had a punch to the gut quality.

What a day!

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ETA: Today (Feb 4 2025) started at 8:42 a.m. with another cluster.  If this follows the pattern, we will have a few more days of these. A CLUSTER of CLUSTERS.

...And CVS only gave Weslee **1** box of his emergency rescue nasal spray. Uh...nope. Sending msg to his epileptologist now.