By Amber Kaiser
I recently had a heart-warming conversation with Monique and her son, Price, about their family’s epilepsy journey with him and how they got to where they are today, feeling a little safer and more accepting, just three years after Price experienced his first seizure at 10 years old. . .
Price was already 10 and had his first seizure at school. He was on the playground and they called me because he had a seizure and they were on the way to the hospital. I remember I ran out of my classroom and started flying to the hospital. By the time I got there, he was fine. He was talking to me and didn’t remember anything that had happened. He was playing football and the theory is that he got hit in the head somehow and had a seizure. We were going to go to the concussion clinic to see what happened and why he had a seizure. We had actually gotten discharged, and the school called and told us he didn’t actually get hurt—he was standing and fell after he started to seize. We met with a neurologist, and she explained to us that anyone can have a “free one” because anyone can have a seizure, but if it happened again to let her know.
We went for a year without one and almost forgot he had even had one, and then the following year, he had a seizure on Christmas Day. We were all at the house, and the kids were playing with their toys and stuff, and I remember him putting together a game and he started having a seizure, and he was bleeding. I called 911. I didn’t know at first, but he had fallen and hit his ear on the furniture. They got there within about 5 minutes, and we got into the ambulance with him. He was starting to come back to baseline and wasn’t able to talk until we were at the hospital.
Nemours Children’s Health (then known as A.I. Dupont) ran a bunch of tests on him and everything was normal. We got scheduled with a neurologist at a children’s hospital in Philadelphia called Children’s Hospital of Philadelphia (CHOP). Nemours didn’t do any testing at the second ER visit, but did lab work. We had to wait to see the doctor a month later, and he had another seizure a week before he finally saw the neurologist at CHOP. We had our visit with her and described what had been happening with him, and that’s when she diagnosed him with epilepsy.
It was unbelievable. I couldn’t believe what was happening.
In the beginning of the process, Epilepsy Foundation (EF) provided me with so much more information than we could ever get from the doctor. In the beginning, I spent a lot of time going through EF and that’s actually how I heard about your Neureka® system! Price is 13 now so it’s been about 3 years since he was diagnosed.
In the beginning, it was really hard. It’s just like when he had his first seizure it broke me down because it was so scary and I didn’t know what to do, what to expect. The pandemic also started soon after, but it kind of made me feel better because he was at home. I didn’t even know what service was available at school. I got the information from EF. He went seizure-free for a few months until April. With the shut down and him being at home, that gave me peace of mind because I was at home, too.
During this time, I still wasn’t sure what to do or how to handle it whenever he had a seizure. He started having them more often–about once a month. He was playing basketball, he was playing AAU, and we had to be there to help him if he needed it. We had one episode because he was having them monthly, and he was on Keppra and it wasn’t working, so the doctor talked about trying a new medicine, and then he had a cluster of seizures and they were violent, and he was throwing up, soI took him to the ER again. Because of the cluster episode (after trying a new medication), they put him back on Keppra to slowly get back up to the level he was taking before. He has focal epilepsy and it helped because his seizures didn’t go into generalization (where the person becomes unconscious).
We added lamotrigine, and he’s had longer chunks of seizure freedom since getting on lamotrigine. He went for 7 months without a seizure. Then, when he started playing basketball, he started having one a week because of basketball season. I think the anxiety was causing seizures, the stress was causing seizures. With club sports he wasn’t having as many, but he was feeling more pressure with school basketball and had seizures more often.
The school had a seizure action plan, medication was at the nurse’s office, and they set up his schedule so one of his close friends was always with him, but it’s just not sufficient enough for him to have a “bathroom buddy” because it would be too hard on his “bathroom buddy,” so I called for another 504 meeting for options to be ironed out. EF helped me with a 504 plan, and he’s had a nurse who comes to our house in the morning and picks him up at the door and walks him to the bus, and she helps him get home on the bus in the afternoon.
The nurse is licensed to also distribute medicine to him. When everything was happening more frequently, I called to request the nurse to be with him throughout the whole school day and she spent the day with him at school and walked him to and from the bus in the morning and afternoon.
In the beginning it was really scary obviously. I was getting used to taking the medication and I’m still kind of getting used to it.
The thing that helps Price and our family is that we are open with his epilepsy, and sharing has really helped us emotionally.
Oh yes, every teacher, every friend, it helps with them knowing. It gives us more peace of mind and knowing that they are there to help. The sports refs and others who get to know us, they are prepared if he has one and everyone feels more comfortable.
And we definitely like our doctor. We’ve seen multiple different people in this process and they have all been great.
I think everyone is acclimated to it; it’s just a part of your life. They’ll hang out with him and help when needed. It’s just a part of our lives now. Price is the oldest in our house now, and he has 3 younger siblings and my oldest is out of the house, but they are all aware and we are there for each other.
I finally got used to it and came to my acceptance. I’m not afraid it’s going to get worse and I'm feeling more comfortable now.
There are some great options for his type of epilepsy. We’ve done some of the testing for surgery, the phase 1 EEG and we’re at the point of the phase 2 EEG. We aren’t at that point yet to do phase 2 and it’s up to Price if he wants to.
We use the app for medication reminders and Price is excellent at taking his meds on time, and it’s helpful for me as a caregiver. I do like it because it helps me to check on him. The Neureka® Sleep we are definitely using a lot! SUDEP is always a risk factor and if something is going on with his vitals, I’ll get an alert and check on him at night.
My advice would be to do as much research as you can like with EF and finding support from people going through it as well. Because in the beginning, what makes it so horrible is your lack of knowledge and not knowing how to handle it. It can get better with each event because you start to have more experience with seizures.
Price has handled it really well based on all the issues he’s had to deal with and being monitored regularly. I think even though he doesn’t have as much privacy, he’s grateful for the help with the monitoring. He has a good attitude about it. He doesn’t fight with us; he’s understanding that we need to be aware and help him with his epilepsy.
I don’t have anything more to share about my story, but what you guys are doing is so important because there isn’t much out there and how you can help our quality of life. You are a source of hope as well. I hope Neureka® continues to grow and bring more options and resources to the epilepsy community.
Are you interested in learning more about Neureka® or would you like to share your epilepsy story? Feel free to email us at email@example.com and stay connected with us on Twitter, LinkedIn, Facebook and Instagram!