Neureka Stories: Nasiba and Her Son Alek’s Determination and Hope Living with Epilepsy
By Amber Kaiser
Nasiba contacted Neureka in 2023 when she was searching for a device for her son, Alek, to wear while he was sleeping. Alek has epilepsy, and although his nocturnal seizures (seizures during sleep only) don’t happen often, when they do happen, they have the potential to become a life-or-death situation due to status epilepticus, when the brain continues seizing despite intervention and taking seizure rescue medications at home. Unfortunately, after many months of being seizure free, Alek started experiencing nocturnal seizure clusters after he went to bed one night in December. Thankfully, he was wearing Neureka Sleep and due to alert level changes in his heart rate, heart rate variability and blood oxygen, his parents were notified and they checked on him. They were able to see him about a minute before his seizures actually started (which tells me he was likely having an aura that was already affecting his central nervous system’s reactions even before his first seizure started). Because the seizure clusters didn’t stop after giving him his emergency seizure medication, Nasiba and her husband rushed him to the nearest emergency room. Eventually, the medical team was able to stop his seizures with medications in the ER and they came home the next day.
Gratefully, Nasiba contacted us to let us know what happened. She and I have been in touch since Alek started wearing Neureka Sleep. We met over Google Meet and caught up with each other at the beginning of this new year as she was open to sharing more about her story with Alek. I also had the opportunity to meet Alek and say hello!
Alek experienced his first seizure when he was 5 years old
When Alek was 14 months old, he was diagnosed with Acute Disseminated Encephalomyelitis (ADEM), which is “a neurological disorder characterized by brief but widespread attacks of inflammation or swelling in the brain and spinal cord that damages myelin. Myelin is the whitish protective coating over nerves that helps with electrical nerve signaling.”
It’s the kind of event that usually happens once in your lifetime and Alek was left with scarring in his brain. White blood cells were fighting the virus throughout his brain and some places in his spinal cord. There are only two centers in the U.S. that specialize in ADEM—one is actually in Dallas, Texas (where she and I both happen to live near) and the other one is in Pennsylvania.
Alek has many challenges including a neurocognitive disorder, a rare neuroimmune disorder, ADHD, epilepsy and other conditions we weren’t expecting as parents. From 14 months until he was 5 years old, he didn’t have any seizures and then at 5 he had his first seizure out of nowhere. It’s likely from the scarring in his brain because the nerves have to start connecting differently. Children with ADEM normally have a peaceful time their first few years of life and then the seizures will start. The doctors attributed epilepsy to the lesions in his brain.
His first seizure was also the first time he had multiple seizures back-to-back (also called seizure clusters). He was seizing for lengths of time at school and then they started happening only in his sleep (seizures during sleep are also called nocturnal seizures). 6 months after his first seizure cluster, it happened again and because they hadn’t prescribed any medication yet, it was an emergency situation. After that they put him on an AED medication, another seizure happened again and we were able to stop it with rescue medications.
The time that just happened in December was his 4th seizure cluster and the rescue medication for seizures didn’t work so we took him to the emergency room. It was a big deal, he threw up and it took him days to recover, his liver and brain were slowly recovering. Every time a seizure cluster happens, he comes out different and his brain tries to recover and then we’re back at square one. He’s a fighter and he’s at high risk for brain damage and SUDEP (sudden unexpected death in epilepsy).
Doctors don’t always know what to do
The doctor was at a loss for further advice about how to adapt to living with seizures and epilepsy when he was diagnosed about 3 years ago now. They don’t know what else to recommend to help with everyday safety—we’re just really grateful we found Neureka Sleep when we searched online. Alek has sensory issues and we were worried about how he would tolerate wearing the device while sleeping—he’s actually been doing really well with it.
Alek only has seizures every 6-8 months. That night we got several phone calls because he kept having elevated heart rate and blood oxygen levels and I went back to the dashboard to see the times. He went to sleep around 9 pm, and his first seizure started around 11 pm. Fortunately, the system alerted us right before he went into a seizure.
Alek enjoys reading and loves learning about dinosaurs
Alek is now 8 years old. He is writing, reading and doing math. He’s in 2nd grade, but reading at a 4th grade level. We are really just trying to keep him educated and he’s getting ready to practice multiplication. We try to keep him learning daily with occupational therapy. Everything we do is therapy for him. He’s also in gymnastics and does physical therapy. He loves playing video games, he’s into dinosaurs and he explores things and can get very focused on something. Right now, he’s also reading that popular kid’s book, “Diary of a Wimpy Kid.”
The impacts of epilepsy on the family
The doctors in Dallas were really helpful in shedding light on what was happening, but it’s learning to deal with the everyday stresses and the unknowns that are the most difficult. We all have trauma, we all go into survival mode, and we still wake up multiple times a night to make sure Alek’s Neureka Sleep tablet is on and that his ring and everything is still working. My daughter is 13 years old and she has a lot of anxiety living with this experience. I had to do a lot of research and am still doing a lot of research on his conditions and epilepsy. We are also working with a naturopathic doctor from San Francisco and they are working with us from a nutritional standpoint on what foods are good for Alek’s brain and helping his brain recover. He’s also already had 2 medications that don’t work. We are now trying a 3rd medication and hoping to get the prescription CBD oil, Epidiolex. He also takes natural BIORAY drops and the nurse at the school helps him with his drops. It’s a smaller school so they are easier to work with on what he needs. After a difficult year at a public school, he qualified for help and now he has his own assistant who spends time with him during school most of the day. Whatever his needs are, she’s there to help and she is really helpful with math as well. They do all kinds of things to adjust for his needs. We have to stay ahead of the curve at school and when things get difficult, Alek shuts down so we are working on making it easier to go through each day.
Nasiba and Alek’s experience using Neureka Sleep
We are so fortunate to have this technology. We have two other devices, but they don’t monitor like Neureka Sleep.
Alek is eight years old. He was diagnosed with partial focal seizures with minimal movement when he was five. They often happen at night and never resolve on their own. We have to use emergency medication each time. Otherwise, he goes into status epilepticus. His seizures don't happen very often, but when they do, it's a life-or-death situation. For this reason, Alek is a high risk for SUDEP.
For years, I have looked for a home alert system that would be able to detect seizures based on vitals and not movement. I could not find anything in the U.S. There were multiple systems sold in Europe, but they told me they could not service patients in the U.S. due to our laws.
We had to sleep with Alek for several years until we discovered Neureka. The Neureka team was amazing at listening to our needs and finding the right fit for Alek. We have been using it for a few months, and two days ago, we watched it work its miracle.
Alek had a major seizure in his sleep. We were alerted by a Neureka phone call. This seizure did not respond to emergency medication. So, EMSA had to administer two other medications to get it to stop.
If it hadn't been for Neureka, things would have ended very badly for us. I want to thank your team for the technology that saved my son's life!
Finding an emotional support system
Locally, we really have nothing for epilepsy, but we are a part of the Seigel Rare Neuroimmune Association (SRNA). Mr. Seigel started this neuroimmune association and they have a social event every summer. We first heard about it from Alek’s Dallas neurology team. As part of the association, they hold conferences once a year in Dallas as well as virtual events with doctors from all over the world, collaborating with each other about different treatments. We went to an event last year in San Antonio. I’ve learned a lot about epilepsy through SRNA. I’m also a member of MOG Antibody Association on Facebook. Locally, our children’s hospital doesn’t have a pediatric neurologist, the closest was in Oklahoma City and they are so backed up, they don’t have any appointments available so we’ve been seeing Alek’s doctors in Dallas.
Advice for other families living with epilepsy
Have hope and keep pushing through. Don’t give up. These children have a great future and we just need to love them and keep pushing through the difficult times. I need to think that there is a reason why Alek is here and there is always something we are learning through this experience. You have to keep pushing. Always do your own research and ask questions. I came across Neureka when I was looking for an epilepsy seizure alert dog last year and then Neureka Sleep popped up. Doctors don’t tell you about so many things—keep yourself educated!
