*Always consult with your doctor before making any changes to your treatment plan or diet.
There are many hidden elements to an epilepsy diagnosis. Those on the outside may think of seizures when they hear a friend or family member has epilepsy. But those close by know epilepsy is so much more, and often begins with assessing treatment plans and adjusting to a new normal. Kaya Koball was diagnosed with epilepsy six years ago when she was in the 3rd grade, and has been on an ever-changing medication and diet protocol since.
The first steps taken were trying different medications, which both failed to eliminate her seizures and caused numerous side effects.
“The toughest part about trying different medications is always having to switch from one to another, and going through the process of all the side effects between each of them. Some of them made me extra tired and others made me feel sick,” says Kaya.
The Koball family, along with Kaya’s doctor, originally focused on using medication to control her absence seizures, but after her first tonic-clonic seizure in 6th grade they started looking at other methods, including diet.
“We cut out dairy, gluten, and a few other items which we identified as being inflammatory for Kaya. We saw great results and were able to eliminate some of the pharmaceuticals that Kaya was taking. We also introduced CBD oil to Kaya’s treatment plan and immediately saw improvement,” says her mom Krystal.
Eventually they hit a wall with this treatment plan too, and had to again try other methods. They ended up finding major success with a strict ketogenic diet along with continued CBD use. Finally, after trying 3-4 different medications and medication combinations, and multiple changes to her diet, Kaya has seen significant improvement in regards to side effects and seizure control. They are currently making minor adjustments trying to find the best combination of medication, diet, and CBD.
While the medical journey is different for everyone, finding others who understand the first-hand struggles of growing up with epilepsy can create friendships and bonds. The Koball’s as a family found those connections first through the annual Rochester walk.
“It was so great to meet other families and see other kids who were just like Kaya. I think this also gave Kaya some reassurance that she was not alone and that there were lots of others right here in Rochester who also had epilepsy,” says Krystal.
After the walk it was then Camp Oz, a week-long overnight camp for youth with epilepsy, where Kaya was able to spend more time with other kids her age.
“I enjoyed all the interaction with not just the new friends you get to meet, but the other kids that are going through the same struggles as you are. I enjoyed all of the fun activities they provide. The counselors were great and made the entire week fun,” says Kaya.
After spending years trying to find the right mix of seizure reduction and minimal side effects, along with meeting others who understand the daily struggles, Kaya has learned one overriding rule of how she lives her life with epilepsy.
“I don’t let epilepsy control my life because I am the boss. There are too many positive things in my life to enjoy so I don’t let epilepsy run the show,” says Kaya.