Thankful for health
It was like the scene from a movie. I grabbed my seizing 3-year-old out of the car and ran barefoot into the front doors of the hospital, screaming for someone to help me.
They took him from my arms, and I don’t really remember what happened after that. In the movie, I would’ve collapsed in a bawling heap on the floor. It’s very possible that happened.
Someone gave me a pair of socks for my bare feet. “I love Earth,” they said, with “love” represented by Earth in the shape of a heart.
I still wear them.
It was Aug. 22, 2007, and I woke up at 2:30 in the morning to the sound of Austin gurgling. I ran to his room to find him seizing. He had recently been diagnosed with epilepsy, after what we thought was a one-time occurrence in April turned into several more in July. The seizures were becoming worse despite medication.
The next morning, I called our friend, Jane Greene, who lived down the street, to be on call for Tayvin, who was 6 months old, in case I needed to take Austin to the hospital.
Around 9 a.m. he started seizing again. His grand mal seizures usually didn’t last more than a couple minutes, but the one during the night lasted five minutes AFTER I had discovered it.
At three minutes, I called Jane, loaded Austin in the car, and called the hospital to tell them we were on our way.
He was admitted a couple days for observation. We were referred to another neurologist, prescribed another medication, then another and then another. He had more EEGs than I can count.
We were quickly losing our little boy, and the prognosis was bad. Our neurologist not only misdiagnosed Austin, but told us to expect mental retardation.
I wasn’t going down that easy, and some would probably argue I became borderline psycho in my search to cure my son.
My research would lead us to Johns Hopkins Hospital in Baltimore, Maryland on Oct. 18, 2007 with the most amazing pediatric neurologist, Dr. Eric Kossoff.
He diagnosed Austin with myoclonic astatic epilepsy, or Doose syndrome, which is resistant to medication and affects only 1-2 percent of childhood epilepsy.
Yes, I’ve bought lottery tickets. Apparently low odds just work against me...
Dr. Kossoff put Austin on the modified Atkins diet, an easier version of the popular Ketogenic diet used to control epilepsy.
Austin went from having 50-100 drop seizures a day to being completely seizure free within two days of starting the diet.
We weaned him off a year-and-a-half later, and he’s been seizure free ever since.
Today, Nov. 22, we celebrate Austin’s 14th birthday. He’s now been seizure-free for 10 years.
I wish I could find the words to truly describe this young man. He’s a special one for sure. Smart. Kind-hearted. Funny. Determined. He has overcome so much and has no long-term effects from the seizures.
Thankfully, he doesn’t remember much of the torture he endured. It’s crazy the seizures themselves only lasted six months. It seemed like a lifetime.
November is National Epilepsy Awareness Month.
Every year, one in 150 people who have uncontrolled seizures dies from sudden unexpected death in epilepsy (SUDEP.)
This year, the Epilepsy Foundation is raising awareness about SUDEP and self-management and treatment options that may reduce its risk.
SUDEP used to be one of my greatest fears. After 10 years, I have come to take for granted the fact that Austin is cured from this terrible disease that affects so many.
This Thanksgiving, this day and every day, I will give thanks to God for my healthy son, my healthy daughters, my soon-to-be husband and stepsons, my family, my friends and my many blessings.
Happy Thanksgiving to you and yours. May we never forget all we have to be thankful for.