Picture above: Falcon, 9 years old at Magical Playground Cupertino, CA
By Amber Kaiser
Carolyn and I first met when Ray, Neureka Founder and CEO, and I attended Epilepsy Awareness Day Disneyland (EADDL) in Anaheim, California, in 2022. Carolyn was friendly and very open about her son Falcon’s condition with epilepsy to us. It was also my first experience at an epilepsy awareness event, so being there and listening to her story was like a breath of fresh air to me. I had never been to an event where you can meet so many other people with epilepsy, or the family and friends of those who know someone with epilepsy. You could talk about it openly and I experienced more first-hand understanding of others living with epilepsy than I ever had in my life! Working with Neureka and bringing both my personal and work experience to help and connect with others who have epilepsy has been a blessing to me. And speaking of this, Carolyn wanted to make sure that everyone knows that she admires Neureka for being open to hiring people with epilepsy. When we met at EADDL, that’s what stood out to her and she supports any company that hires people with epilepsy and gives them opportunities.
It's been almost a year now since we met, and our Neureka Team has learned that Carolyn can relate to the epilepsy community in many different ways. Epilepsy care and support are so important and can be unique for each person. It’s heart-breaking, yet sharing her experience I’m sure is healing to her and her family and anyone who gets the opportunity to read this.
Carolyn shares her story firsthand below.
Falcon was diagnosed with complex partial seizures when he was 3, and as his seizures changed over the years, he was later diagnosed with complex partial seizures secondarily to generalized when he was 5. He had more complex partial seizures that turned into generalized seizures, leading him to become unconscious, fall and be unresponsive. When he was 9, he was also diagnosed with an epileptic encephalopathy syndrome called Developmental Epileptic Encephalopathy-Spike Wave Activation Syndrome (DEE-SWAS), previously known as ESES. He started showing symptoms of this disease when he was 5-6 years old.
Originally, when he was diagnosed with just epilepsy, it was very manageable at the time. He took his anticonvulsant meds and seemed fine. He started talking more and being more present in the moment.
However, when his symptoms of epileptic encephalopathy began around 6 years old, we did not know what was going on. We thought it was part of his autism diagnosis we learned when he was 2, or he was developing major psychiatric issues, but truthfully, he was severely regressing. We had no idea that an altered mental status could be caused by a medical condition called epileptic encephalopathy, and we never knew any kind of epilepsy could cause a deterioration in speech and language, cognition, motor skills and behaviors. Doctors either said it was just his autism, or he had some psychiatric comorbidity. In 2017, his abnormal EEG showed he had interictal spikes in 12 different areas of his brain bilaterally during non-REM sleep, but he still did not receive a proper diagnosis or aggressive treatment until 2022. We suffered for years with a child who was aggressive and a danger to himself and others. Heartbreakingly, Falcon was also having serious memory issues, and losing speech and language skills along with fine and gross motor skills.
The doctors wanted us to go back to Applied Behavior Analysis (ABA) therapy and started having us see a psychiatrist and psychologist, and even fitted him with hearing aids. I became a Behavior Therapist myself to completely rule out that my son’s issues were of medical basis rather than behavioral, and to fight and advocate for him. He could have easily been “5150’d” or involuntarily restrained multiple times. Since my son was properly diagnosed and treated with IV steroids and Intravenous Immunoglobulin (IVIG) which improved his neuroinflammation, I now have an extremely easy going, compliant and reasonable child except when he is having a seizure. His seizures sometimes present in seizure clusters with inter-and post-ictal psychosis.
He loves playing Minecraft, Roblox, watching YouTube videos and swimming. He wants to be an astronaut when he grows up. We did not need ABA again or a psychiatrist, or even a psychologist, and all of it was discontinued. My son is still on Vimpat medication, Onfi, IVIG, Amantadine and CBD for epilepsy/THC just to keep him functioning and enjoying life as much as possible. We are now slowly playing catch up and working with him to help him remember how to spell his last name, learning his address and city as well as reading, writing and math.
Many families are suffering. Kids are considered autistic or relegated to mental hospitals and have to take antipsychotic medications when they may actually have epileptic encephalopathy or encephalitis. My current job involves working with people with autism and I see that many of them might have encephalopathy, and it breaks my heart that no one has bothered to even look into this possibility first.
Most of my epilepsy support groups only comes from remote Facebook groups. The 2022 EADDL was our family's first epilepsy event on such a large scale. There is a lot of awareness and community involvement with epilepsy now compared to the 1990s. We have two other children in our family with epilepsy. One would be 29 years old today and the other is 21. Back when my oldest son was little, there was very limited support for people with epilepsy. He felt so much stigma just for taking his AEDs that by 18 he wanted to be off medications. He passed away from SUDEP(Sudden Unexpected Death in Epilepsy) at the age of 23. I believe that if he had been taking his seizure medications (or AEDs medication), he would still be alive today.
Neureka Sleep and the epilepsy caregiver support gives me peace of mind at night. With Neureka Sleep, Falcon was finally able to move out of my bed when he was 9 and sleep a little further away from me. Neureka has notified me when he has had some abnormal biomarkers at night and I am able to be more conscious of how he might be in the morning and the next day. Neureka has helped me monitor his sleep apnea which is also connected to his seizures. The Neureka team has become my second family and support system. Ray and the rest of his team have made me feel less alone in this journey. I now feel I have a team of people keeping an eye on my son while he is sleeping and I feel more secure that I will not lose another child in his sleep.
One thing I have learned from parenting several kids with epilepsy, is to trust your gut and don’t try to find other people who have the exact same symptoms as your child. Everyone is different and a seizure can do whatever a brain can do. Just because your child may not necessarily fall on the ground and start convulsing does not mean that your child doesn't have seizures, or that your child's seizures are mild. Untreated seizures–no matter how mild or unlike the big tonic-clonic or generalized seizures–can still cause long-term brain damage and affect their quality of life. Many people with DEE-SWAS do not even present with seizures. It’s very important that neurologists, epileptologists, primary care physicians, pediatricians, emergency room doctors, mental health crisis teams, psychologists and psychiatrists learn more about this syndrome so they can recognize the possibility of this disease in their patients and not further delay the correct treatment. Back in 2017, my son had a chance of being able to live independently. That is no longer possible due to the delay of diagnosis and aggressive treatment causing a 34 IQ point drop from 85 to 51 in just five years. Epilepsy and memory issues are also common. My son will be needing care for the rest of his life, decreasing his quality of life, causing undue stress on our family and costing society more money in the long run. It is important for doctors to stay updated about this disease and awareness needs to be made that it is no longer required to have a spike wave index of 85% during non-REM sleep to be diagnosed with DEE-SWAS. That is antiquated information. We desperately need a foundation for DEE-SWAS in order to increase fundraising in studies for this disease as well as increasing awareness and education. If you are interested in learning more and helping Carolyn to create a nonprofit dedicated to DEE-SWAS, email her.