ThatPurpleMom.com: #GelasticSeizures

Showing posts with label #GelasticSeizures. Show all posts

Dec 9: Overwhelmed. Again.

I keep trying to carve out time up write here, work on projects, deal with my health issues, finish writing books, help Weslee, etc, but I am struggling. (Oh, and my computer died. Arghh!)

Finally healed from my 3 hospital visits (3 in 6 weeks!) so now I need to turn my focus to my super-low platelets and uterine cancer.

Weslee has been having drop seizures (sometimes followed by gelastic) almost every night. When not in his safe space (bed), either I catch him as he falls (nearby by accident / fate/ luck) or he falls backward into walls, floors, doors, and one time, into the tub/shower. He hits his head every time, and often gets scratches or cuts on his back.

He crushed a little shelf (pic to left) set in the bathroom as he fell onto it. Luckily, it had held only his "night-timies" ... overnight disposable underwear, extra tp, etc. Sooo glad he doesn't close the bathroom door because his body would have blocked me from getting to him. (As a reminder, we hung a long blackout curtain over the doorway so <1> he can have privacy, and <2> I can get to him.)

And I have either the flu or a nasty cold. Cough, fever, migraine, nausea/vomiting. Either way, I am laid up. Mostly.

Will post more when I can.

Thanks. Vikki

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#ThatPurpleMomcom

#gelasticseizures

#uterinecancer

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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 ..

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Nov 23: Weslee's Seizure Cluster

This is Weslee, my 29 year old child. He has autism, ADHD, and intractable seizures.

This vid was taken early in the morning (~2 a.m.) on Friday Nov 21. He had had troubles getting to sleep, so I went in to see if he wanted a sleeping pull (prescribed).

I saw he had been having a cluster of seizures that continued to last over another hour. Mostly gelastic plus what I call the "wiggle worm".

Had to give him his rescue nose spray and yes, a sleeping pill. A lot of sleep is absolutely crucial for an epileptic like him.

He has had an increase of seizures since my health began to rapidly decline, and my cancer diagnosis. Stress, I assume.

#ThatPurpleMomcom

#gelasticseizures

#uterinecancer

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For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Oct 22: Wine Glass Charms plus Seizure

While assembling my Halloween Wine Glass Charms (yes, I am late), my son had a seizure. A short singular gelastic seizure. I had barely set up the project space whrn the seizure happened, but it shows a typical "craft situation". Interruptions.

I noticed that I sigh a lot, or breathe deeply. When I recordered this vid, I was having troubles breathing, plus also had shaking hands and heart flutters. I'm falling apart over here!

#thatpurplemomcom #wineglasscharms
#wesleeseizures #gelasticseizure
#2025projects

Thank you.

Vikki

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For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List. Thank you.

Sept 19: Friday Seizures

**Ignore his hands. His seizing brain has no filter or control.**

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This is Weslee, my 28 y.o. son. He has intractable (uncurable) epilepsy.

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Two loud crashes / thumps from upstairs had me running to him. After about 20 minutes of seizures (clonic followed by gelastic) in the bathroom, I got him to bed. This is about 5 minutes later.

This is like the first time I was diagnosed with cancer. That was 2016, and his seizures never really got better, despite surgeries and more. What shape will my new diagnoses take in his life??

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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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Aug 18: After and During Seizure

I hadn't been home for too long. I had been out running errands, including picking up some prescriptions that I had troubles getting in on time. Briviact: two different dosages. I gave him the missed pills right away and hoped the delay of only about 8 hours wouldn't be a big deal. (Due at 8:00, given at 4:00).

Boy, was I wrong.

So I'm in my bedroom with the door closed because, you know, covered in sweat. I had a couple fans going ... just trying to cool down.

Weslee bangs on my door. "Mom! Mom!", he cried and boy, it sounded urgent, so I open the door (yes, I was dressed). He had glazed looking eyes, he was drooling, and I knew he'd had a seizure. After all of this time, I, of course, recognize the signs.

I quickly guided him to my bed and I started the video within seconds so this is it.

It's obvious that he cannot miss even one dose of his Briviact. That medication is the latest that we added to his lineup, and I'm hoping that during his next appointment, we can possibly up it by 50 mg, and maybe that will help mitigate the seizures. Who knows? It is just a guessing game at this point.

He is now in his safe space (his broken bed). I brought him up some 'dinner' (a string cheese and a cup of strawberry banana V-8 juice.) Protein, dairy, fruits and veg. A super healthy meal, although small.

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Weslee needs more brain surgeries for his seizures. To help, please like, follow, subscribe, comment and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.

Jul 3: Is Dollar Tree Giving Up?

Weslee is back having clusters of seizures again. Mostly gelastic. One was at the top of the stairs; thankfully he heard me scream from the first floor to [ MOVE! ], and did so before the seizure controlled his body and made him lose his balance.

I am usually quick enough to grab his shirt or place my body to where I can stop/slow momentum. My messed up spine is witness to that.

I couldn't this time.

Our next home will NOT have stairs.

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Made from D.T.
nail polish and paints.

When I started crafting and painting (to calm myself, and as a relief), I discovered the Dollar Tree. Their prices mostly range from $1.25 - $5.00, which was decent.

I found the basics, like paint, molds, nail polish (too cheap to wear but perfect for painting). I tried working with cement and Plaster of Paris then to painting and resin. As a beginner. I didn't care about quality. I found so much of what I needed.

There are four locations of the Dollar Tree near me. They mostly have the same products, but a few are different. Plus, there is only 1 where the personnel care about appearances and cleanliness.

Are they looking for a reasin to close stores? Giving up the biz? Did they stop caring?

The newest location to open is actually the worst. The one in the vid was the first I discovered in this area.

If Weslee was still into coloring and such, he would love it there. I do pick up things from time to time for him to make my birthday, Mom's Day, and Christmas cards. I don't ask for much from him ... just a hand-made card. I treasure those.

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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 ... Thank you.

June 11: An Embarrassing Situation

As a caregiver of someone with epilepsy, there are a few sounds we don't ever want to hear.

The thud of a body hitting the ground
The crunch of head hitting cement or a bathtub
A seizure alarm blasting loud enough to get our attention
The slurred speech of a person climbing out of a nasty seizure, like a tonic clonic (grand mal)
..and what I awoke to yesterday: a seizure happening on the toilet, (or conversely, YOU on the toilet and you hear a big seizure happening in another room.)

Weslee really didn't want me coming into the bathroom to check on him, but I over-ruled him.

We already have heightened hearing for unusual sounds, but you want the person to at least appear to have privacy. You check but his body has fallen to the floor and you can't get the door open.

The epileptic will come back from seizure-land, embarrassed because going on the toilet is a very intimate situation .. pants down ... etc.

So... that was the start of our yesterday and it went down from there. He had so many clusters that by early afternoon, he had taken two extra doses of a seizure med, and when they didn't work, his rescue nasal spray.

What an exhausting day.

He kept falling asleep. Couldn't resist snapping this pic.

P.S.: I solved the door thing by placing a big blackout curtain across the bathroom doorway. Door stays open, giving privacy, and it allows me to reach Weslee quickly.

Before we came up with that idea, he had a nasty tonic clonic behind a closed bathroom door, hitting his head on the tub on the way down. I couldn't move him (he blocked the doorway) but did reach around enough to pat his toe, try to talk reassuringly while watching a pool of blood spread.

A trip to the ER happened as soon as possible. He had broken his nose.

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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 ... Thank you.

Apr 27: Nighttime Seizure Activity

Weslee has troubles sleeping, so he gets 10 mg of Melatonin every night. The rule, though, is if he is still not asleep by midnight, that he comes to get a sleeping pill from me.

So a little bit ago, almost 1 a.m. exactly, he comes out of his room to grab a extra seizure pill. His brain was too busy having seizures and wouldn't let him sleep. I suggested that since it was already past midnight, he should take a dose of sleep meds. Done. Back to bed.

Over the next 10 minutes, he had a big ole cluster of gelastic seizures. I recorded a lot of it on my phone, but with very little light in his room, it was not really useable.

At 1:20 a.m., I brought out the big guns... the nasal rescue spray. He didn't want me to record it, so I put the phone down.

It took another 15 minutes before the seizures tapered off into sleep.

... ... and THIS is why I don't sleep at night any more.

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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.

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.

Apr 3: Seizure Confusion

Can't believe I am writing this.

My post from yesterday showed Weslee seizing. I call it the 'wiggle worm', but it is a something plus a gelastic at the end.

Because it wasn't a tonic clonic, what many people mistakenly believe is the only kind of seizure, one of those people said he did't really have a seizure. That he was playing around.

I understand that. I do. But this is soooo wrong. On many levels.

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Yes, he was seizing.

No, he wasn't playing or pretending.

Yes, he knows he is seizing.

No, he can't control it.

Yes, I am sure.

No, I am not lying to get sympathy.

No, I would never choose this life.

No, Weslee isn't an actor.

The flash is too bright, Mom!

Better, but I'm on the phone, Mom!

ETA 3:59 pm: I was supposed to see someone today for vomiting blood last night, but can't leave W. (Having a large cluster of seizures.) He doesn't know about the skipped tests. I won't put that on him.

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Please help with Weslee's medical expenses. Click here. Thank you.

Apr 2: Wiggle Worm Strikes Again

Weslee had had s relatively light week of seizures, until just s few moments ago.

Three 'wiggle worm' seizures in about 4 minutes, with a 4th shortly after I took the below vid.

Gonna be a long night.

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Please help with Weslee's medical expenses. 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.

Night of Seizures

It's been a while since Weslee has had a cluster of seizures at night, but tonight broke that string. At a little before 2 a.m., I heard the tail end of one. Walked in to him saying he still hadn't gitten to sleep.

We have a deal where if he is still awake at midnight, he can come get a sleeping pill from me. It had been a while since he had to so I assume it slipped his mind.

I get the pill from my room. By the time I got back to him, he was having another seizure... a combo of gelastic and wiggle worm. He got the pill down between seizures but by the time 2:26 hit, I knew he would need the rescue nose spray. Geez, he hates that, but I didn't want to wait the usual half hour.

Here at 2:44 a.m. ... still waiting for the spray to take effect, and the seizures to calm down.

Update at 4:12 a.m. ... ... he is still awake so I gave him something else to help him get to Dreamland. At least the bigger seizures stopped so a big THANKS to the rescue spray!

However, when he doesn't get enough sleep (8-10 hours), it increases the possibility of the bigger seizures.

Vid of Seizures and Aftermath

This is what happens when he gets sick, or otherwise have breathing/coughing jags.

The first is his 'wiggle worm/pretzel', which I still dont know what type of seizure it is. The 2nd shows his attempt to talk after a cluster of the above seizures.

I hate epilepsy!!!

(www.ThatPurpleMom.com)

Let's hope the vids can be loaded in. Fingers crossed.

1st vid: To see on YouTube, click here

2nd Vid: To see this video #2 on YouTube, click here

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.

Just Another Sunday

Well...it wouldn't be the weekend without seizures and spilled blueberry juice (Blue Machine Naked Juice).

I hurried downstairs, we cleaned it up in between seizures, and made him get upstairs to bed. This is just one of his 20 seizures or so, in the last 40 minutes.

If his morning pills dont kick in by 10:50, I am giving him the rescue nasal spray, which he hates because it stings and has a nasty taste.

It's getting him down again. I am back on self-term watch.

#gelasticseizures

Gelastic Seizures

These 2 vids show just a tiny portion of dinner tonite. Weslee's seizures have been increasing again, but as we were trying to eat (and watch WISH) tonight, these gelastic focal seizures occured about every 2-3 minutes.

We finally gave up on both movie and dinner. He did get down a handful of raw baby carrots, some chicken fries, and choc pie.

He is now safely on his bed.

And I am in my bed with a fresh dose of flu and cough medicine, praying his seizures will calm so we can actually get some sleep tonight.

(working on link for the other vid)

Hospital E.R.

Weslee started throwing up (which he rarely does) and having a huge cluster of seizures. I became extremely concerned so I somehow got him down the stairs and out the door.

He was there for quite a while, as they had troubles getting the seizures under control too.

Part of the problem was that one of his seizure meds wasnt registering in his blood. Turns out, he MUST take the brand version and never again generic.

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