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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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.

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.

Update on CVS

In my post from Feb 4, I mentioned that CVS would give Weslee only 1 box of his seizure rescue nasal spray. There are times when we go through both in a 24 hour period. No way a single box can last an entire month.

I sent a message to Weslee's epileptologist, asking for their help.  They must have sent CVS a supplemental RX because, surprise surprise, within 48 hours, I got a denial text from them.  

"It's too soon." 

I assume CVS got this message from the insurance company.

Seriously?

Don't they (insurance companies et al) understand the concept of RESCUE?

What do people with EPI pens do? Do they have to wait too? Or people with insulin dependent diabetes who need more than what they got in the most recent med pick up?

I would pay for it out of pocket but I don't have a spare thousand lying around.

Restocked

I was finally able to pick up Weslee's seizure rescue nasal spray today. Only one box, so 2 doses, which won't last long the way things are going.

Still, grateful CVS fulfilled the order.

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Sidenote: went to grocery on the way back home. Only had $35 so it didn't stretch far considering the price of almost everything was so much ... more. But the autistic part of him begs for Blue Machine juices as part of his weekend routine. (Complicated, which involves wearing specific clothing, using his correct pillow, etc.)

We just had a serious talk about tightening our belts because of increased prices. Even discussed getting quail again, mostly for eggs.

My book sales are very slowly picking up. Mostly my "The Bored Book". Hoping it continues to gain momentum.

And thankful I already have my art/craft supplies, so I did more painting yesterday. With input from a friend, decided to make ALL backgrounds for my bookmarks etc on the black shimmer paper, so need to redo that group tommorow.

After all of my errands today, my back is killing me. Heating pad...here I come!

V

Frustation

Got a text relatively early this morning from CVS regarding Weslee's seizure rescue spray. Basically it said they're working on it. Might be a couple of days. So yeah. Frustration.

Luckily, he didn't need it today.