“Kaylee was diagnosed with Epilepsy in 2019. She had been having anywhere from 10-20 absence seizures in an hour. It took a while to come across the diagnosis because of the nature of the seizure. It was likely she had been unknowingly having these seizures for years before receiving the diagnosis.
It was so hard for Kaylee. She couldn’t focus in school, she’d be in the middle of a sentence and would have one, when she’d come out she couldn’t remember what she was doing. She was getting “special treatment” from her teachers and peers, and she hated that. She just wanted to be “normal”. Having these seizures meant she’d never be able to participate in sports that she wanted to like cheerleading or basketball, or be able to drive. She was at the point of giving up because she didn’t want to take medications anymore.
It was so frustrating as a parent just cycling through medications and nothing was working. She was taking so many pills. The first med she was on, she was taking 8 different pills/day. But the seizures continued.
When we found you guys at CLC, Kaylee had been on 2 different seizure meds at the maximum dosages, and she was still having seizures. That’s when we added the third. The next step to managing her seizures was going to be an implantation of a vagal nerve stimulator. That’s where I drew the line. I didn’t want to go in that direction, I knew I had to seek out an alternative approach that would allow Kaylee to have a chance at a more “normal” life.
After getting off the initial phone call, I felt a lot of hope. We were at our last resort. It was hard not to be skeptical when doctors are in your ear saying “med, med, med”, but we were desperate and willing to try anything. The scans you guys did to pinpoint the neurological stress on her system… that gave me hope too. Hope that this was maybe what we’ve been missing all along.
Since beginning care at CLC in December, we have had TWO normal EEGs. These were the first normal EEGs we have had in over TWO years! NO SEIZURE ACTIVITY WHATSOEVER!! She has now been weaned off 1 of her medications and it is our hope we can eventually wean her off meds all together.
We finally have hope again. She’s since made the cheerleading squad, and we just learned she has been cleared to get her driver’s permit after receiving a 2nd normal EEG report; something she’s been wanting to get for over a year. In the 6 years she’s been in dance, this is going to be her first dance recital going into it seizure free. She even got a solo part because she’s beat this!
Kaylee is so excited to finally be able to participate in things she’s been wanting to do since she was a kid!
We drive 50 min each way to get to you guys, but I’d do it all over again in a minute.”