OCT 11: Glioblastoma Tumor

I was going through some papers that I hadn't looked at fir a while, including , my first bare-bones seizure tracker.

It gave details about the very beginning of Weslee's seizure journey, and his first surgeries.

First recognizable seizure (will discuss SIMPLE PARTIAL - DE JA VU seizures another time) was a tonic clonic (grand mal) that happened March of 2010. After quite a few tonic clonics/drops/and absense, EMU stays, and experimenting with meds, we decided to do surgery.

This is when Make-a-Wish gifted him a giant tv.  We weren't sure of his outcome.

2013: A 'WADA' test was performed to determine where his speech was... ... a highly invasive surgery. I began to prepare for the possibility of blindness, inability to talk or walk, and other side effects.

They did a Two-Step surgery in 2013. I did NOT expect a diagnosis of a brain tumor called a 'glioblastoma'. (Fatal and aggressive, but not. Confused.). He survived but not without lifelong consequences.

• Walks with a limp.
• Picked up a stutter.
• Partially blind in both eyes.
• Memory has more holes than a pasta strainer.
•  ... ... Seizure-free (kinda) by Jan 2014 until my breast cancer diagnosis May 2016. Stress, we think. Now nothing at all helps the seizures to disappear. Everything we try seems to make it worse.

Most of this is in my book 'Epilepsy: One Mother's Perspective' plus a whole lot more.

Note: Weslee has had multiple seizures every night for the last 3 nites. We are both sooo over this!!

Vikki

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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.

Jun 18: Why I Am So Purple!

I have written bits and pieces about why I go by "That Purple Mom" but since I am in the process of revamping my epilepsy book series, thought I would add a bit more plus do a short vid.

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Here is a quick intro to why I am called "That Purple Mom". It begins and ends with my son.

Weslee.

His first seizure (that I know about) was a tonic clonic less than 30 days of him being diagnosed as autistic. Scared me so much that I can still hear and see it clearly in my mind, 14 years later.

Just like the smell of brain fluid never quite leaves your memory.

(We did discover that he had been having simple partial seizures for years. They presented as episodes of de ja vu, although many more than the average person. Every doctor that I mentioned it to poo-poo'd it. It wasn't until I researched seizures that the puzzle pieces clicked in to place.)

So many of us caregivers, especially when we are family members, get diagnosed with PTSD.

November 2013 (about 6 months after his first 2-step brain surgery), I decided to wear purple EVERY DAY to help promote awareness about seizures and epilepsy. People would comment about it, and I would give a quick sentence or two.

I always have purple on me, even when I was in the hospital (purple frames for my glasses and purple temp tattoos). It gets a tad tedious after all of these years, but it is nothing compared to people never knowing when a seizure will hit.

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My books are available on Amazon.com, or through here. Thank you for your support.

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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.

Purple Day for Epilepsy

Still wearing purple every day for epilepsy awareness. Have been since November 2013. Wow! Nearly 9 years.

What? Why?

Weslee's first brain surgery for seizures was in 2013. I had had only two short years to educate myself on all things epilepsy, including the "awareness" color (PURPLE), and the epilepsy "month (November, although there is a day here in March for epilepsy awareness also.)

When November 2013 rolled around, I made up my mind to wear purple every day so that people will stop and ask why I wear so much purple. I then explain my son's seizures started as an overabundance of "de ja vu" episodes, and when I would mention them to doctors, they would, nicely of course, tell me I'm off my rocker and don't borrow trouble.

It wasn't until Weslee's first TC (tonic clonic) happened in 2011, then the ER visit and neuro-doc visit, that a doctor finally told me in Weslee's case, they were probably a type of simple partial seizures. WHAT?!?!?!

I got angry. If I had known this, if I had been taken seriously, perhaps his first TC might not have come completely out of left field for me.

I condense this, of course, when asked why I wear so much purple. Doctors can let their god-complex get in the way of their humanity. I say...give us the info, the possibilities, and don't just dismiss a parent's concerns. At least google "too many dejavu episodes".