On the eve of meeting his first seizure assistance dog, 10-year-old Nathan Schoonover, from Tomah, Wisconsin, excitedly anticipates life with his future yellow Labrador/ best friend, Bella. Meanwhile, Nathan’s grandmother Florette, and single mother Kari, recount the family’s journey to this point. Florette recalls that “Nathan had his first seizure when he was four, right after he had his tonsils removed. Doctors thought he was having them before then, but that was the first known one.”
Since then, Nathan has battled epilepsy and experiences 10-15 seizures on a daily basis, with 95 percent of those seizures occurring at night while he sleeps. Enter Bella, who is trained to adapt and be in tune with Nathan’s sleeping patterns, and will know when to seek help when Nathan is experiencing seizures, any time of the night or day. Bella is also trained to help prevent Nathan from walking or perhaps collapsing into harms way, should he be in a potentially dangerous situation while seizing.
Currently, Nathan is taking Depakote and Diazepam. He has been given a bevy of different medication combinations in the past, but none of them have had a significant impact. The one thing that Nathan has responded well to is the Ketogenic Diet, which is a diet that is high in fat, has no sugar, no dairy and is low in protein. Everything he ingests has to be weighed and measured. While this diet did wonders for Nathan’s quality of life, he couldn’t stay on it forever, as doing so would severely impact the functionality of his developing organs. Kari explains “While he was on the Ketogenic Diet, he had just three seizures in two years. Then, in less than a year of going off the diet, his seizures were back to being just as bad as they were before he started the diet.” Kari went on to say that they still try to stick as close to the Ketogenic Diet as possible. For example, they try to keep his sugar intake low, without completely eliminating it.
In addition to side effects from his medicine, Nathan also struggles to overcome other daily obstacles. One of the biggest challenges he faces if there is too much noise or too many people around is that he will go into sensory overload, which can be a potential trigger for more seizures. Hand-eye coordination is tough for him. Less than a month ago, at the age of 10, Nathan learned to ride a bike. While this is an exciting moment for any parent and child, Kari points out that this is a conquest many kids are able to achieve at a much younger age. Nathan also realizes this and sometimes shows his frustration of not being able to do what he wants to, both physically and mentally.
It’s also difficult for Nathan to make friends, as many kids his age don’t understand his condition, and he comes from a small town where he can’t relate to any other kids with his condition. His service dog will in fact be the first ever service dog in his district. Lastly, Kari notes that Nathan is behind in Math…but, I think many of us might chalk that one up as a normal challenge.
Despite Nathan’s father not being present in his life, Nathan has a great support network of family and friends. While his mom and grandmother provide the greatest support, epilepsy is not something that runs in the family, so this is a new and challenging experience for all of them. Bella now instantly becomes an integral cog, both emotionally and physically. The family has gone to great lengths to fundraise for this well-trained seizure assistance dog by involving a variety of respected establishments within the community. Well-known names like Papa Murphy’s, Culvers, and Josh Provides lead the list of donors, while local gas stations and a neighborhood block sale have also generously contributed in the effort. After raising the appropriate funds, Nathan, Kari and Florette traveled to Florida together where they are currently at, to pick up their new family member.
Doctors and Treatment
When Nathan was diagnosed with epilepsy, Kari maintains, “UW-Madison Children’s Hospital did a great job initially helping him and getting him on the Ketogenic Diet; however, when Nathan had to come off the diet, there wasn’t much more they could do.” Nathan now visits the neurologist every three months for a check-up and to receive his medication, but there has been no further progress in treating his symptoms or condition. At this point, there is simply no procedure or medication that will improve the regularity of his seizures. In fact, the side effects from his current medication have gotten so bad that they have almost rendered his treatments futile.
Tips and Tricks
When Kari and her family first started down this path with Nathan, she felt overprotective and found herself wondering what if this or that happened to him. Over time, she has learned to let go a bit. “It’s gotten to the point where he has to live his life, and I have to let him,” Kari says. There are still some tricks Kari and Florette continue to try such as putting bells on the bed so that when Nathan shakes at night, they both sometimes hear it. Bella of course will also significantly assist.
Nathan’s family encourages him to do the things he loves like playing video games (e.g. Minecraft and Pokémon), riding his bike, playing with Legos and soon, playing with his new dog. All are great activities for stimulating his mind and improving hand-eye coordination. While nothing remains easy with regard to Nathan’s condition, four new steps in the right direction have the Schoonovers’ feeling optimistic about the future and maybe sleeping a little better.