Written by Stephanie Stanley
November is Epilepsy Awareness Month. I want to share a little about our journey with epilepsy and why it is so important to spread awareness.
We found out that our son was having seizures at 2 months old. When we first noticed Payton’s body twitching, we mentioned it to a medical professional, but was told it was nothing to worry about. That “It was probably his nervous system still developing”. It was brushed off as if it was nothing. Shortly after this visit Payton had a noticeable seizure that we caught on video, it was terrifying. We made several trips to the local children’s hospital where they acted like it was no big deal. The hospital said the EEG showed seizure activity but it was nothing to worry about. They even did an MRI to see if Payton had a brain malformation or brain damage. They told us the results were perfect, his brain looked normal. That “his left hemisphere was smaller than the right but it’s no different than having one foot smaller than the other”.
We started seeing a local neurologist and during one of our many appointments Payton started having a seizure. The neurologist immediately started making arrangements to send us to a specialty hospital in Memphis TN. He told us Payton was having infantile spasms. At the time we had no idea just how serious IS was. No one explained how devastating seizures or IS could be, not until we made it to the hospital in Memphis.
As we sat in the waiting room I looked around and vividly remember telling my husband that Payton didn’t need to be here, that everything was going to be okay. That my tiny 3 month old was fine. I was in denial or still in shock because it was all happening so fast.
After multiple tests and scans (EEG, MEG, MRI, etc), the epidemiologist came into our room and told us news we never thought we would hear. He told us Payton had a brain malformation called polymicrogyria on both hemispheres but it was worse on the left side. He then told that it was caused by a stroke in utero during the third trimester.
Payton was having hundreds if not thousands of seizures a day. We tried steroid injections, special diets and countless meds, but nothing was controlling them. Payton had his first brain surgery, a left frontal lobectomy, at 7 months old. Then his second very rare brain surgery, a hemispherectomy, at 15 months old. He also had emergency shunt surgeries and several shunt revisions that are considered brain surgeries.
Unfortunately Payton still suffers from seizures everyday, he has intractable epilepsy also known as drug resistant epilepsy.
It was clear that the doctors and hospital in OK weren’t properly trained and had no idea how devastating epilepsy really is, nor did they know that infantile spasms is the most catastrophic form of childhood epilepsy. It a rare form of epilepsy that does irreversible damage to the child’s developing brain and needs to be stopped quickly. On top of all of this no one mentioned SUDEP (sudden unexpected death in epilepsy).
This is why it’s so important to spread awareness. Epilepsy isn’t “just a seizure” it’s so much more than that. It affects everything and everyone involved. Corporations don’t turn purple to raise awareness for epilepsy, NFL teams don’t wear purple ribbons to show their support. It truly is sad how little support and funding epilepsy has and yet it is so devastating and can be fatal. I have watched my child turn blue during a seizure, I have thought multiple times that this seizure is going to be the seizure that’s going to take him from us. It’s the heartbreaking reality for so many.
Stephanie Stanley is a contributing author to Dear Mama: Stories of an Extra Lucky Life. Click here to purchase a copy!