This interview was conducted after Linda volunteered to share her opinions on her experience using the SeizureLink System. While she did receive a free SeizureLink System during the pilot study, she did not receive any compensation for this interview.
Parenthood is the most awesome, frustrating, exhilarating, exasperating, rewarding job you will ever do. You have this little person that you shape and mold, teach valuable life lessons, and stand beside through the happiest and saddest times. Hands down, there is nothing like it.
When you’re a parent, worry comes with the territory. You worry about your child’s safety, their education, their friendships, how they function in the world. As they get older and venture out into the world, the worry grows with them.
But when you have a child with a chronic health condition, that worry skyrockets. Suddenly, the day-to-day worries seem pretty small because the condition overshadows everything. What if he has something happen at a friend’s house? Or at school? Will there be someone there to help him?
You can’t realistically have your eyes on your child 24 hours a day. So those times when you can’t see him – even when he’s just in the next room – can be nerve-wracking.
This is what Linda faces every day. Her son, Kingston (King), has epilepsy. He just wanted to be a kid and Linda ached to give him that; but the price was too high – until SeizureLink. This is their story.
What's your name and where are you located?
My name is Linda. I’m 36 years old and am a mom to my 10-year-old son Kingston. Kingston has seizures and I am his caregiver. We live in Texas.
What do you two like to do for fun?
We like to do outdoor activities like camping and hiking. There are lots of places nearby that are great camping and hiking spots. That’s one of the great things about Texas. There’s so much to do. We also like to go to sporting events, like watching Kingston's older brother play basketball. Movies are a big thing for us; we love taking movie trips together.
What's your epilepsy story?
Kingston was diagnosed in April of 2016.
He had absence seizure activity for a pretty long time before we were able to get an actual diagnosis. He would experience hundreds of absence seizures on a daily basis then one day it generalized into a very scary tonic-clonic seizure at school! That happened on April 26, 2016, and it was very scary for all of us. We knew we needed to get aggressive about finding answers.
From that point on, since that seizure, we have been on a mission to answer that big question, “Why?” We worked so hard to find out what was ailing Kingston, researching, asking questions, and reading everything we could get our hands on. We were not going to stop until we had answers and a way to help our little boy.
It wasn’t long before we found a physician who was leading the latest seizure clinical study groups with a children's hospital. We made the long trip more than 10 times in the year of our diagnosis. At that point, Kingston was experiencing tonic-clonic seizures daily. He would lose consciousness and stop breathing for about 2-3 mins. It was terrifying.
He went through test after test like a champ. Some days he didn’t want to, but he hung in there and pressed on. He was a real trooper, my Hero. Finally, after many EEGs, resting state MRI's and DNA testing, we got a name for his disorder: uncontrolled generalized epilepsy and child absence epilepsy (CAD). What a mouthful.
Putting a name to it didn’t mean that we were automatically able to get his epilepsy under control though. At one point we were recommended for brain surgery but in the final phases of preparation, we were denied due to the generalized nature of the seizure activity. The doctor said that the seizures were coming from too many different parts of the brain. So, surgery was a no go. question was “how do we manage it?” We have tried many drugs. We dealt with medication that didn’t work, awful side effects, and remedies that didn’t quite hit the mark. We are now two years down the road and Kingston is currently on a drug that seems to be helping. The next
Now we are just living life with this disorder, hoping the meds will continue to help. At this point, they are controlling his seizures so much that we are only experiencing them weekly! We are excited! And hopeful. Hope is a wonderful thing, isn’t it?
What was life like before you tried the SeizureLink System?
Before SeizureLink I was just a big ball of worry, constant worry. Kingston was having a lot of seizures in his sleep. Those were probably the scariest. I had a lot of sleepless nights. How could I know if he was in trouble? How would I be able to help him? I wanted to just sit by his bed all night and watch him sleep – just in case. But that isn’t realistic – or practical.
We needed to do something, but what?
I tried other devices, things that would alert us if he seized, but none of them even came close to doing what SeizureLink does for us. The first night we put it on him, it alerted us that he was having a seizure at 5:50 am. I immediately felt relief. We are so thankful!
What did you do before you tried the SeizureLink System?
We tried several different things. There was a seizure watch that monitors the heart rate, but that didn’t give us the early alert that we needed. It wasn’t always reliable either. We tried baby monitors, and a pulse oximeter alarm as well. They just didn’t give us what we needed. They worked but did not have the capacity that we were looking for. They all fell short and we didn’t feel that any of them gave Kingston that protection of early alert that we needed.
What were the pros and cons of what you tried?
The seizure watch was convenient because it didn't come off, but it only monitored an accelerated heart rate and would easily alarm during emotional stress or physical activity.
The pulse oximeter worked but only alarmed once the O2 was dangerously low. It didn’t catch some activity and it was hard to keep on at night.
The video screen monitor allowed me to actually see him, but unless he was making a bunch of noise with his seizure I wouldn’t catch it. There was no alert system.
What appealed to you about the SeizureLink System? Why did you think it might be better than what you tried before?
Ideally, I was looking for something to alarm me at night. That is what gives me the most anxiety, his night seizures. I think it’s awesome because when the device is triggered, I get a phone call to make sure I know something is happening. And because it is activated by muscle, the detection is really early.
SeizureLink helps me get to my son. That is so precious.
What was your biggest breakthrough while using the SeizureLink?
We knew he was having seizures at night, but none of the devices we tried were picking them up well. We set up the SeizureLink and that first night it alarmed in the middle of the night, letting us know he was having a seizure! Finally!
How is life different now, after using the SeizureLink System?
We are all so much more at ease now. I don’t have to worry so much and I can get a good night’s sleep because I know I can trust SeizureLink to wake me if my son is in trouble. I think King is a lot more relaxed too, and he thinks his Monitor is pretty cool! He enjoys spreading awareness about his disorder and SeizureLink is a great conversation starter!
What does SeizureLink do for you that other things you tried couldn’t or didn’t?
SeizureLink alerts me in the middle of the night when King is having a seizure. Nothing else we tried ever did that. The watch I used before only reported elevated heart rate so no early detection there. Plus, if he got excited or did anything to raise his heart rate it would go off. Not helpful.
The pulse oximeter is designed for an infant, so it was hard to keep on his finger while sleeping. Even then it only alerted us when his O2 levels dropped really low – dangerously low.
The baby and video monitor was helpful because I could see him without getting up, but that’s all it was. Basically, it was a glorified walkie-talkie with a video monitor. There was no alert or alarm.
We also tried the safe sleep pillow, which is an anti-suffocation pillow. Of course, there was no alert or anything, but we felt a little better with it because we knew he wouldn't suffocate.
What advice would you share with someone who was thinking about purchasing the SeizureLink System?
Do it! It’s really easy to set up and use; a simple straightforward Monitor. I would advise getting comfortable with your user’s phone and email if your wearer is young. Also, it is good to understand your Bluetooth capability and range.
Is there anything that you would like to add?
I love our SeizureLink Monitor! It reduced so much of our worry and stress. I highly recommend it!