26 Aug 04: Seizure Update

I know it has been a while. Keep reading.

From drop
seizure against
washer/dryer.

I wrote about Weslee's May 24 fall down the stairs during a drop seizure, but not the subsequent ones.  He had another several within the next few weeks including one where he fell against my bedroom door (making the hole in the wall larger), one where he fell UP the stairs which was weird but that happened to be the way he was facing, and one where he fell against the washer-dryer unit. 

My spine is disintegrating but I try to catch him when I see his eyes glaze over and can get to him in time.

The 4 fractures in his back from the May 24th fall have not only not healed, but are causing him a great deal of pain. He's now taking a acetaminophen a couple times a day every day. If you knew him at all, you would know that he's got an amazing tolerance of pain, but this is starting to hurt him so bad that he's getting very despondent.

He confessed to me today that living this way is not tolerable. It's so much more than the word despondent, that I can't even find a way to say it. 

He wants the seizures to go away. He wants the pain in his back and in his head to go away. He wants to live a normal life. He wants friends. And he can't. 

Weslee is even willing to do another SEEG surgery (this time at the Cleveland Clinic), even though the last one he had done on May 1 2019 gave him a stroke and put him in a coma. To be willing to go through all of that again, to chance another stroke and possibly death is something that he is absolutely campaigning for. He doesn't care anymore that he may not come out of it. 

I don't know what to do anymore. It hurts my heart, and with all of my own health problems which are getting worse daily, life has gotten very difficult for the both of us.

What can I do?

Thank you for listening.

Vikki, his Mom

26 Jul 04: Weslee's Bed

This is Weslee's bed when he is not having seizures. The bedding is super soft, which satisfies his autism. He likes the big "armed" pillow, which I need to replace because it is squishing flat beyond anything I do to keep it full size.

This is the most recent bed frame purchase. He is so hard on beds ... falling against the bed / on it during a few kinds of seizures, like the drop or the tonic. Can't replace mattress yet, despite the stains of blood and brain fluid. For now, absorbant nighttime disposable underwear and ice cream are more important.

The pain from his drop seizure a few days ago (fell into / onto the washer/dryer unit) is decreasing but the biggest scrape is turning a bit red around the edges. (See pic.) I just bandaged that one with antibiotic ointment. Really don't want more blood on his mattress.

Well, at least he didn't break his nose this time (although he could have re-fractured his back [broken from May 24 fall down stairs during drop seizure]), and didn't leave another puddle of blood.

Having lunch with W's grandmother (my stepmom) tomorrow. Haven't seen her in ages. Not since before my Dad passed, though we talk often. We only have less than 2 hours before she needs to head to the airport to go home. Living in Florida means she is used to this temp. Wish I was.

Gonna stop here. The fireworks are making my migraine worse. I know .. I know .. I owe you guys an explanation for the long pause from posting. I will do it when I can think and when I am not melting.

V

(Remember: Weslee is my adult son, nearly 30 years but mentally and emotionally 14. My squeezie-boy! He is autistic with mystery epilepsy, many brain surgeries, had a stroke and coma, partially blind and oh so many health problems.)

26 Jul 02: Damage from Seizure Cluster

This is just a portion of Weslee's clusters of seizures for today. He had a lot of really bad ones mid-afternoon during which he fell on the stairs. Again.

He had seven seizures in 5 minutes, and more after that, that I lost track of. Then just a little bit ago, he had another cluster of seizures during which he fell against the washer/dryer unit, causing damage to his back. External but possibly re-fracturing his back. 

Both of those big ones were drop seizures, and could have been a whole lot worse. 

This video is after he crawled (afraid to walk) to his bed after the washer incident. Like I said...  his back is pretty messed up again, possibly rebroken from when he broken his back falling down the stairs on May 24. For now, I can see his back is  majorly scratched.

As his mom, I hate that he has to go through this.

(Sorry I haven't been around much lately. Life as a caregiver is a struggle. Maybe I will write a bit more tomorrow.)

26 May 16: More Drop Seizures

(Pic of this tall guy sleeping. So glad he doesnt have many seizures while sleeping.)

I know .. I know. It's been a while since I posted but thought I would update now.

Weslee has seen the spine specialist for those 4 spine fractures from his Apr 24 fall down the stairs during a seizure. Confirmed the fractures and admonished him to rest for 6 weeks and let him heal.

 Yeah. Right.

And of course, he won't.

He has had a lot of seizures (mostly drop) lately but I cant always catch him. Two happened in his bedroom; I couldnt get to him because his body was right agaimst the door, blocking me.

One hit him at the bottom of the stairs. I tried to catch him. Was too far away. At least he WASN'T on the stairs this time.

Anyhoo ... he really needs those surgeries at the Cleveland Clinic; my car still wont make it there and back. People want value for their money (donation) so here shortly, I will be adding products to my etsy store.

Thank you for your support.  

Vikki 

(That Purple Mom)

*****

Please visit my etsy shop at

www.etsy.com/shop/VikkiLawrenceShop 

Jul 22: Cluster of Seizures

Weslee hadn't really had many bad seizures lately. Some absence, some simple partial.

I was upstairs whrn I heard a crash downstairs. By the time my tiny brain woke up to remind me what that sound was, he was coming out of it. And unfortunately, had just opened a bottle of juice, which I tried to clean up. Seriously, a mess.

It sounded like a clonic or absense (paralyzed) followed by a gelastic.  But at least he didn't get hurt.

I made him run up to his safe space (his bed), and in less that 15 minutes, I caught the end of ... something. looked like a kinda short gelastic. I gave him a rescue nasal spray. Had a feeling he wasn't done.

Guess who was right.

(Vid shows the end of seizure #2.)

About 20 minutes after the 2nd one, he had come into the hall outside his bedroom. Started to tell me he was apprehensive about going into the bathroom (to brush his teeth). His voice trailed off. I looked up and started to sprint. He fell backward, stiff as a board, then momentum threw him into bathroom. His back shows the tale. 

He had an absense (or clonic or Todd's paralysis) followed by a drop seizure.

Even on his worse tantrum-ing day, he doesn't deserve this.

........

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.