SUDEP Book

I am working on a SUDEP (Sudden Unexpected Death in Epilepsy) book for my "Layperson's Guide to Epilepsy" book series. I feel it might be one of the most important in the series.

Because...

...it seems like I read about another death from epilepsy every day, including the young actor Cameron Boyce (from Disney) last year that hit many people hard, including me and my son.

Did your doctor mention death by seizure was a possibility? How much info did you get? Did you lose a friend or family member? At what age should a child with seizures be told about SUDEP?

Please share your story for my book.

If you belong to a Facebook or other epilepsy support group where you can share this post, please do so. 

Please contact me via Instagram @VikkiLawrence1 or leave a comment here, or email to vikkibooks @ yahoo.com. Subject line: SUDEP story. Pictures of your loved one are welcome.

Maybe together, we can save lives.

Thank you.

The Layperson's Guide to Epilepsy Series

I am a member of several epilepsy groups in Facebook. It really helps to connect with others in (basically) the same boat. I have learned so much, and cried when a life is extinguished because of a seizure. Recently, it was suggested that I expand the scope of my books even further, so the is what I came up with for this book series: Vol 1: Epilepsy – One Mother’s Perspective Vol 2: What is Epilepsy? Vol 3: So You Have Seizures. What Now? Vol 4: Seizures and SUDEP Vol 5: Seizure Information for Family and Friends Vol 6: Seizure Information for Schools and Teachers Vol 7: Seizure Information for Bosses and Businesses Vol 8: Seizure Logbook: Track Seizures, Medications, Side Effects, Appointments and More Vol 9: Five-Year Seizure Diary (many different covers) Here is a link that I hope will take you to the books that are available this far. https://www.amazon.com/s?k=Vikki+Lawrence&i=stripbooks&ref=mw_dp_a_s

Safe Sleeping

When Weslee, my son, first started having seizures, the tonic clonics (grand mal) often happened first thing in the morning...just before awakening or as he awoke. I once found him pressed between his mattresses and the wall.

He was sleeping downstairs at the time, but soon after finding him in that awkward position, I made him move back upstairs.

If your kiddo has sleeping seizures too, here are a few things to keep in mind:

1. No pillows, stuffed toys, extra blankets etc on the bed. If a twisting motion is made during a seizure, the child could suffocate. Research: SUDEP.
2. Some parents have the child sleep with them. It makes it easier to listen to breathing, or lack thereof, feel the bed vibrate with convulsions, and in general experience a slight bit of relief knowing you are right there.  This doesn't work for everyone, especially when older children are involved.
3. Get a bed monitor. Although many epileptologists (neuro docs who specialize in seizures)  won't actually recommend them as efficient, just as many parents swear by them.  Explanation: a special pad is placed under the top mattress. If it detects unusual vibrations, like convulsing, an alarm will sound and/or be sent to a cell phone.
4. Pulse/ox detector: I am in the process of getting one of these for Weslee to wear at night. He tends to stop breathing during his TCs.
5. SmartWatch: Same as the monitor. Physicians won't recommend it often but it often catches electrical spikes and will alert to your cell phone.
6. Pad around the bed.  The last time I bought a bed for Weslee (last year, at age 22), I got one with a trundle.  At night, he pulls it out on one side, and in the other side we unfold one of those cushion chairs to be like a mattress.  When he falls off of the bed, he lands on softness. No black eyes yet!

What else can we do to keep our kiddos safe at night?

SUDEP claims more lives

Why does it seem like deaths from seizures / epilepsy are on the rise? I hear of at least one a week, and sometimes more.

Here are just a few heart-wrenching children:

August 18 2019
Adeline Nielsen - precious little 3 and a half year old

August 10 2019
Katelyn Davis - 18 years

August 3 2019
Aaron Lucero - 18 years

What can we do to get the word out that seizures can kill?

Cameron Boyce, Death by Seizure

Today we heard of the tragic death of Disney star Cameron Boyce.  He died in his sleep yesterday from a seizure. 

While my son was in the hospital May and part of June, he got to watch a LOT of kid TV shows, including "Jessie" and Disney's "The Descendents" (1 and 2).  We got to see Cameron in so many shows ... over and over and over. 

So when we heard of this young man's death, I struggled for air.  Death in his sleep.  Seizure.  Probably SUDEP. 

As the mother of an epileptic, I hate seeing news like this.. of what I dread.  I can only imagine what his family must be going through. 

How will I tell my son? How will he take it?

I sat down with him and as gently as possible, explained about Cameron.  That the news didn't report epilepsy or SUDEP but it probably was.  That this is exactly why I don't want him sleeping with too  many pillows.  Why I still check on him during the night.  Why I haven't slept well since 2011.

People need to know about epilepsy, and understand it is a killer.

Pass the word.

https://www.amazon.com/dp/B07PWGR8M8

Epilepsy - One Mother's Perspective

As the mother of an adult autistic man who has uncontrolled epilepsy, I spent a while writing this book to give easy-to-read information about seizure and epilepsy basics, plus some frequently-used  terminology, symptoms and triggers, treatments, and possible surgeries.

It also gives logs and charts for you, as the epileptic, can keep track of important information (for your self AND your health care team) such as: important contacts, appointments, medications, discussions with doctors, blood work, occurrences of all sorts of seizure types, usage of a VNS swiper, and more.

Whether you have seizures or know someone or are taking of such a person, this book is indispensable. Please order your copy right away.

 

Paperback edition

Published Mar 22 2019

Link: https://www.amazon.com/dp/1885615221

 

E-Book / Kindle edition

Published Mar 21 2019

Link: https://www.amazon.com/dp/B07PWGR8M8

 

I am currently working on a companion Kindle book that goes more into our story of the seizures beginning and our journey to navigate the terror that goes along with it.  That short Kindle book will be made into an MP3 file that will be available for download, by individuals AND libraries. The goal for these is mid to late April 2019.

The paperback linked above is available now to purchase for your store, and I am available for talks and autographing.  Please contact me. Thank you.