June 1: Complications

Weslee has had a few difficult days. Not just a bad cold and cough plus seizures, but he doesn't feel like eating so his weight is quickly dropping. Sudden bursts of anger pepper the days which, it appears, is a prelude to more frequent and intense seizures like a tonic clonic, and a "night time" embarassing event.

I only put it together when I noticed that 4 out of 7 days had those rage days. I noted those outbursts on my personal calendar (no pic) and not in his seizure diary (pic included).

This past Friday night was a doozy, involving a bedroom door slam and the whole building shaking. I watched him more closely after that.

Saturday afternoon, he confessed a situation had happened overnight (I dont want to embarrass him but you can guess), and he felt he had 'passed out' and thinks he had a tc (tonic clonic) while he slept.

Oh, and his bed is completely broken now. Too many times falling on it during seizures. I ordered a cheapo super duper sturdy metal frame from Amazon. Should be here on Tuesday. Paid with a credit card so I really need to get my June products listed on Etsy to pay it off.

Last night before bed he said he doesn't think the meds are working any more. Great. Just great.

I will call his epileptologist on Monday. Tell her all of this.

That is it for now. Have a good day.

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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 7: Emotional Hills and Valleys

For the most part, Weslee puts forth a somewhat sunny disposition. His autism makes it difficult to fake, but he sure tries. Most people wouldn't notice but as his mom, I do. Of course, I do.

Most people would look at him and brush off how his emotions are all over the place. Those hills and valleys. I guess they would kinda be right.

Off and on, starting at around age 6 or so, he began having depression and self-ending thoughts, which continued throughout his life. Most often, it was brought on by meds. (I had to hide all sharp things, like knives, for a few years. Ever try to run a farm with nothing sharp enough to cut?!?)

We tried therapists and other professionals, but either he was put on a med that had nasty little side effects, or doled out ridiculous non-helpful advice.

We did finally find a decent therapist a few years ago, but she changed practices which didn't take our insurance.

It is always something isn't it!?

But sometimes, like last night, it really gets to him. 'It', as in 'life'.

He ended the day rather morose. Depressed. He was concerned that one day he will wake up, and find me dead. He dreads that, and thus, always has the last thing he says to me before going to sleep is "I love you". And, yes, I say it back, because, duh, I love my son!

The sparse amount of friends was also on his mind last night. He has made a few online, and has even met one when we were at the Cleveland Clinic last year. But most days, he really feels so alone.  It doesn't help that some of these people he talks with online turn out to be complete bullies.

As much as I want to, I can't tell him to get thicker skin. Not only because his autism makes it nearly impossible, but also because of me. Genetics. I am super strong when it comes to fighting for Weslee but otherwise, I am 'tender-hearted', a term I have been called all of my life. I cry, like, a lot.

My poor boy. Maybe I should try again to find a group where special needs people meet others similar to them.

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Weslee needs more brain surgery for his seizures.  Please go to his Medical GoFundMe or to our Paypal ... Thank you.

Freak Out

Weslee just came up to me, freaking out. Sobbing. He is super nervous about the Cleveland Clinic visit and is convinced he is going to die there. Surrounded by gawkers and fluorescent lights. Away from home.

I tried to reassure him... that it is just another EMU visit, but at a different hospital with a different team of doctors and only one test he hasn't had before. And a fervent hope for answers.

If you can help get us there and back, please click here. Thank you.

Emotions Can Cause Seizures

I was surfing YouTube the other night, as I often do while listening for seizures and waiting for a new day to dawn. 

(Yep, I sleep about every other night. I need to hit the hay soon.)

But, I digress.

I came across this vid of a young woman having a seizure during a beauty pageant. It looked like a drop seizure. It turns out her seizures can be triggered by intense emotions like stress.  Video link: 

https://youtube.com/shorts/SPvzXKBgZiE?si=ED_m1Q0QFyA-YLB1

Got to thinking... Weslee tends to have his bigger seizures after we argue or if he gets bullied online, or watches certain videos and movies.  (He saw Deadpool 3 on July 26 and within an hour of coming home, the seizures started.)

Yet one more thing to bring up at the Clinic.