When someone asks me about Epilepsy I tell them to get to know SUDEP; Sudden Unexpected Death in Epilepsy. SUDEP was never mentioned to me when my daughter started having seizures through the night beginning at the age of two. I would have liked a pamphlet or even a poster about SUDEP that I could have read on the wall of the hospital waiting room.
My wife and I first learned about SUDEP while searching the web and then raised it with our daughter’s Neurologist who was also the head of pediatrics neurology at our local children’s hospital. She quickly brushed SUDEP aside and told us not to worry about it. She insisted there was no need for us to sleep near our child otherwise we would disrupt her growth and independence. The doctor went on to say we could tie little bells to the corners of her bedsheets if we wanted to be alerted of a seizure.
It was the advice I ignored and instead took to sleeping on the floor next to my daughter. We had some rough years and most of the time my daughter, Vivien, would stay awake because she was too afraid to sleep. It was difficult to know if she was having a seizure because her kind of seizures was not loud and did not include out of control shaking. They were quiet and without rescue medical intervention, deadly. I have read many stories of parents thinking their child was just tired only to wake up the next morning with them passed away. The seizures took over our lives and I don’t understand why SUDEP was never talked about. The medical community does not want to alarm people. They do not want worried parents and they certainly don’t want lawsuits. No one wants to talk about death but talking about SUDEP might prevent it. If my wife and I did not find this out on our own, our child would not be with us today.
SUDEP is poorly understood and can be contributed to as much as 17% of Epilepsy related deaths. SUDEP occurs in 1 in 1000 adults and 1 and 4,500 children each year. There are more than 3.4 million people in the United States living with Epilepsy; a disorder that happens when brain activity is disturbed, causing seizures.
My own belief is that the number of SUDEP cases is higher. A cause of death can sometimes be tricky. If someone passes away from a seizure and no one is there to witness the seizure it might not be documented. A person’s brain waves have stopped after death and might be written off as natural causes. The deceased no longer show signs of seizures making it difficult to determine the cause of death. There is a blood test that can be administered however it is usually not done due to medical costs.
As a parent, knowing about SUDEP is important. There is a stigma with Epilepsy and many people do not want to talk about it. The most effective way to protect against SUDEP is education.
- Have a plan. Provide information about SUDEP to friends and family.
2. Patients need to take the appropriate amount of medication to reduce the risk of SUDEP. Some patients do not want to take their medication but it is important not to miss doses.
3. A patient should reduce their stress and seek a healthy balance of nutrition. A Keto or low sugar diet can help.
4. A patient should learn how to administer rescue medications and encourage family, friends, and teachers to do the same.
5. Talk to your doctor about SUDEP. Don’t assume your doctor knows everything.
The Cameron Boyce Foundation is raising awareness for SUDEP. The Foundation was named after Cameron Boyce, a Disney star who passed away from SUDEP on July 6, 2019. The goal of this foundation is to educate people unaware of SUDEP and empower those with Epilepsy. They are increasing public awareness to create more research and funding. Hopefully, this will lead to more federal and state laws to educate the public on SUDEP.
Contact them at www.thecameronboycefoundation.networkforgood.com