Centennial, Colorado, resident Kim Nelson, 49, struggled with her daughter’s sleep habits for years.
Nya didn’t start sleeping through the night until about age 7. But problems persisted, even with a full night’s rest. Her fifth grade teacher reported that she’d sometimes doze off during class.
“One time she slept through an active shooter drill, and her friends had to wake her up,” Nelson says.
Typical afternoon or evening activities were a no-go.
“Other kids began to do sports after school and to go to bed later, but Nya was always so tired she’d be in bed by 6:30 p.m.,” Nelson says.
She was finally diagnosed with narcolepsy at age 11. Today, she’s a thriving high school freshman who gets straight A’s and is active on her school’s debate team. But it hasn’t been an easy road.
“When you’re a teen with narcolepsy, you have to be your own best advocate,” Nya says.
Here’s advice from parents and patient advocates who’ve been there.
Dig for a Diagnosis
Narcolepsy is thought to be rare in kids and teens. Research suggests it’s diagnosed in 1 in 10,000 people under the age of 18. As a result, it’s sometimes difficult for your child to get the diagnosis, treatment, and support they need.
Anne Taylor’s daughter, Josephine, wasn’t diagnosed with narcolepsy until age 12. But looking back, Taylor, 52, says the symptoms were clear, even in kindergarten.
“She’d fall asleep in class, but the teacher would tell me she was just lazy,” says Taylor, a resident of Reston, Virginia.
Josephine, now 20, was initially diagnosed with a learning disability. But Taylor’s gut told her it was more than that. Symptoms escalated as she got older.
“She’d literally fall asleep as she ate. Her eyes were open, but you could see that her brain was checked out,” Taylor says. “It was very difficult to see. It was like she had lost all control over her body.”
Josephine did a sleep study at age 11 and was diagnosed with sleep apnea. But the problem persisted.
“I finally put my foot down and was given a referral to a pediatric sleep specialist, who did both a nighttime and daytime sleep study,” Taylor says.
Narcolepsy can be tricky to spot at any age. On average, it takes about 10 years to get a diagnosis. But it can be particularly tough with kids, since it’s so rare and most pediatricians aren’t trained to spot the disorder, Taylor says. Here’s advice from both parents and patient advocates who have been there.
See the right doctor
If your child has persistent signs of sleepiness, Taylor recommends pushing for a referral to a pediatric sleep specialist. When you get that appointment, ask them to do both a traditional overnight sleep study to look for sleep apnea, as well as the Multiple Sleep Latency Test. It’s done the following day and involves five scheduled naps taken every two hours.
It’s important to get both done to at least rule narcolepsy out, Taylor says.
Engage others as advocates
If your pediatrician doesn’t take your concerns seriously, ask your child’s school to write a note on your behalf. That’s how Nelson was finally able to get a referral to a pediatric sleep specialist.
“Up until then, our doctor would just lecture about sleep habits,” Nelson says.
Ask for accommodations
Daytime sleepiness is worse when you’re sitting still and trying to concentrate, so kids and teens with narcolepsy often fall asleep in class. The good news is that they’re entitled to certain academic accommodations so that they can keep up with coursework. There are two types of accommodations you can ask for:
504 plan. It accommodates children with specific medical conditions, like narcolepsy. It’s reviewed at least once a year and follows your child to college.
IEP (Individualized Education Program). It provides accommodations, but also specialized individual education to help your child learn. It ends when your child graduates high school.
Some of the most common accommodations people ask for include:
- Note-taking assistance
- Extra time on tests and quizzes
- Modified class schedules
- Scheduled naps
Nya, for example, says her accommodations include extended test time, the ability to nap during class if needed, and the flexibility to schedule tests and final exams.
“I never have to take more than two tests in one day,” Nya says. “I don’t always have to use my accommodations, but it makes me feel better to know that they are there if I need them.”
Manage medications
Treatment for narcolepsy in children and teens often involves medications that help them stay awake during the day and get deeper, better quality sleep at night.
These medications work well, but they’re most effective when taken on a regular schedule, says Paul Reynolds, vice president of the nonprofit Narcolepsy Network. His 26-year-old son, Chase, has narcolepsy.
“Not every teen is good about taking their medications on time, especially a kid with narcolepsy who may already struggle with executive function,” Reynolds says.
Some ways to help them remember include:
Have them take their medicines at exactly the same time every day. To help them remember, pair it with something else, like eating breakfast in the morning and brushing teeth at night.
Use a pillbox with days of the week on it. Put it in a visible place, like the kitchen counter.
Set recurring reminder alarms. Do this at home and on their phones.
Educate others
“Narcolepsy is often a very lonely condition to live with because it isn’t visible. When Josephine goes out, she looks very put together and cute. Her hair and makeup are always perfectly done,” Taylor says.
“What people don’t realize is she uses all her energy getting ready, so when she’s done with her class or a social activity like meeting a friend for lunch, she has to go home and sleep for three hours.”
Kids and teens with narcolepsy may find that their friends don’t understand why they strain to stay awake during social activities or regularly fall asleep during class. They may also have cataplexy, the sudden paralysis of some of their muscles brought on by strong emotions. It can flare up at weird times, like when they laugh with friends.
Kenya Gradnigo, 28, was diagnosed with narcolepsy at age 9.
“I definitely did get bullied. Kids would make fun of me and pretend to fall asleep and fall out of their chair during class,” says Gradnigo, a social worker in Lafayette, Louisiana.
She was dubbed “Sleeping Beauty” by both classmates and teachers because she participated in pageants. Fortunately, Gradnigo’s core group of friends stuck with her.
“I took time to really explain narcolepsy to them and what it looked like in me,” Gradnigo says. “They really stepped up and looked out for me. We’re still close to this day.”
When Gradnigo went to college, she educated her roommates about both her narcolepsy and cataplexy. As a result, when she had a cataplectic episode during finals freshman year, they recognized the signs and got her help right away.
Teach advocacy skills
Taylor was nervous about Josephine going off to college with narcolepsy. But she also wants her to be independent. Knowing she’s at a school with robust disability services that allows a reduced course load helps.
“Her dad and I think it is so important for her to learn responsibility as an adult and live on her own,” Taylor says.
Josephine lives independently in a campus dorm, but staff members check in with her more frequently to make sure she’s OK. And Taylor made sure she understood how to manage her own health care.
“Since some of the drugs she is on are controlled substances, she sometimes has to jump through a lot of hoops to fill them,” Taylor says. “Anytime she changes a medical provider, she has to go through a 45-minute education class with a nurse navigator. But she’s able to schedule medical appointments, switch pharmacies, and talk to insurance companies all on her own.”
Live life in a way that works for you
Nya’s life looks very different from many other 14-year-olds. She’s up at 4 a.m. every morning to go to the gym with her dad, and she’s in bed by 7 or 8 p.m.
“I’m on my school’s debate team, so we usually have meets on Saturdays anyway that would force me to get up early,” Nya says.
She catches up and socializes with friends during the day on Sunday. Recently, Nya decided to push the envelope a bit so that she could go to a school dance on a Friday night. She had a good time, but it wiped her out for a few days afterward.
“She was very irritable, and for the next several nights she’d literally fall asleep on the family room floor,” Nelson says. “This isn’t a kid who is going to be able to have the normal high school experience of going to Friday night football games and hanging out with her friends afterward.”
Nya’s OK with that.
“My life is so busy with other activities I don’t have a lot of time to think about what I’m missing,” Nya says. “Maybe at some point a medication will become available that lets me stay up later. But in the meantime, I have a world of things to do that I really like.”
