Share Your Journey | The Long and Sleepy Road: A Parent’s Perspective
It’s been a long and interesting road. Growing up in the Dakotas, Trevor was an athletic, outgoing, energetic boy. He played soccer and hockey, enjoyed hanging out with his buddies, and was a great student. In retrospect, we noticed a few strange things about his sleep habits. He could fall asleep at a moment’s notice, even in a loud crowd of children’s roughhousing and a noisy television. Many times we had difficulty waking him. Even so, Trevor was a relatively normal, active boy.
At 9, Trevor started showing the beginnings of something not normal. We starting having trouble getting him to hockey practice—something he loved to do. After spending a day in school, he would be so exhausted that he would nap—for hours. If we could get him to practice, when he would return home, he would immediately go to sleep. We wrote this off as growing pains—he had a major growth spurt over a few months’ time.
In middle school, his sleepiness started to be more noticeable. Once, after playing hockey out of town, he asked to go to the car and take a nap while we stayed to watch the other team play. Two hours later, when the other game was done, we went to the car and found Trevor asleep with the doors locked. He had the keys. We couldn’t wake him. Finally, after getting the assistance of three of the coaches, we were able to rock the car enough to awaken him. Something was not right. We talked to our doctor who shrugged it off, even though sleep disorders run in the family.
His sister became very concerned and suggested that Trevor have a sleep study before he started high school. Our doctors refused to do a sleep study prior to Trevor turning 15 years old. In November, when he turned 15, we found a pulmonologist/sleep specialist locally to complete a sleep study. We took Trevor to the sleep lab, where he completed both an overnight study and a daytime Multiple Sleep Latency Test (MSLT). The overnight test showed no abnormalities; however, the MSLT was a different story. Trevor fell asleep almost immediately and was in rapid eye movement (REM) sleep in less than four minutes. Based upon these results, the pulmonologist diagnosed Trevor with severe hypersomnia/narcolepsy without cataplexy. His prescribed treatment included morning and afternoon stimulants (amphetamine and dextroamphetamine—Adderall). We thought, “At last, some relief.”
Trevor joined his regular hockey team about a month after the diagnosis. The stimulants negatively impacted his endurance and breathing. We worked with the pulmonologist to adjust the medications to provide some relief. In January, Trevor’s world came crashing down. He suffered two concussions over a period of one week. He was now also seeing an orthopedic concussion specialist to help him recover. He compared Trevor’s baseline impact test to a current test—Trevor’s results showed significant impairment. Both doctors discussed his recovery path, and they decided that we should take Trevor to a neurologist for treatment.
Nearly a year later, Trevor was cleared from the concussion but was still struggling with his sleep and memory. The neurologist didn’t like Adderall for Trevor’s treatment and prescribed modafinil instead. This was a disaster—Trevor did not respond at all to modafinil. He spent much of the summer in bed, extremely tired and lethargic. Eventually, Trevor requested to switch back to Adderall. At this point, the neurologist became frustrated with Trevor and us. He ordered an MRI—normal; he ordered two separate depression tests—normal. As a family, we felt this doctor was not helping Trevor. We went back to the concussion specialist after an issue Trevor had early in the next hockey season. The concussion doctor ordered neuropsychological testing to measure Trevor’s brain activity and processing capabilities. Through this testing, we discovered some significant deficits in Trevor’s memory and cognitive ability. The concussion specialist suggested that we find another sleep disorder doctor.
After searching the area, making hours of phone calls, gaining approval from the insurance company and asking numerous questions, we found a doctor in Omaha, NE, who thought that he could help. Once we arrived, it became very apparent that this clinic, and this doctor in particular, had no experience with severe cases. Once again, the search continued. We took Trevor to a clinic in the Midwest, where he was accepted for treatment by a nationally known pediatric sleep disorder specialist. The doctor ordered several tests, including a tilt-table test, blood work, and an actigraph. We returned home with an appointment one month later to get the results of the actigraph. Ultimately, the doctor diagnosed Trevor with circadian rhythm disorder in addition to his previous hypersomnia/narcolepsy diagnosis. Trevor was prescribed light-box treatment along with melatonin to assist with his sleep. After this diagnosis, Trevor was sent to a neurologist within this same institution because of the previous concussion to determine if there were any residual effects. This doctor ordered an electroencephalogram (a test that measures brain waves), which came back normal. We asked for a second opinion from another doctor at the same clinic, who prescribed sodium oxybate and removed melatonin from the prescription. Trevor had a bad reaction to sodium oxybate, and we removed it from his treatment. This institution gave up on Trevor, and we gave up on them. Back to square one.
After attempting to work with another local sleep specialist, we were grasping for answers. We contacted Narcolepsy Network, who informed us of two doctors that we should attempt to see. They highly recommended that Trevor get an appointment with Dr. David Rye in Atlanta, GA—they felt that he could help. We contacted Dr. Rye’s office, and they asked that we forward all information and documentation collected during his treatments. Dr. Rye accepted our request and scheduled an appointment with Trevor for a Friday afternoon. We made the 22-hour drive to Atlanta. Dr. Rye evaluated the documentation and then spent a couple of hours visiting with Trevor and our family. He had each of us complete the “reaction box” test. He diagnosed Trevor with idiopathic hypersomnia—IH. At last, some hope.As a family, we have spent countless hours helping Trevor understand his diagnosis. Since the diagnosis, Trevor has graduated from high school. He was able to hold a part-time summer job, working in production with a local sports team. His daily struggles with sleepiness continue, but Trevor is learning his limits and is taking control of his medicine. Although he had to give up playing hockey, he has become one of the best young hockey referees in the state, allowing him to give something back to the sport that he loves. Trevor plans to attend college sometime in the near future—we are working to find a way for him to have a chance to succeed. Even as we are trying to find a way for Trevor to have successful treatment now, he looks forward to advances in treatment for IH—that one day he can return to a more normal existence.