For children living with narcolepsy, school can feel like a real challenge. But there are steps you can take to set up your child for a productive and successful year.
It’s key to enlist the support of your child’s doctor and the teachers and school staff. You should ensure that you have in place a special education plan that spells out the right accommodations for your student.
Narcolepsy, a serious and uncommon health condition, affects 1 in every 2,000 Americans. While symptoms of narcolepsy often present between the ages of 10 and 20, diagnosis may be delayed in children. Narcolepsy can be hard to diagnose and often may be confused with other health conditions such as depression.
“The average time for a diagnosis of narcolepsy is 2 or 3 years,” said Sanjeev Kothare, MD, director of pediatric neurology at Cohen Children’s Medical Center in New Hyde Park, New York. “Parents may think their children have something else, like a psychiatric illness.”
Children with narcolepsy are commonly misdiagnosed with attention deficit hyperactivity disorder (ADHD), depression, sleep apnea, and various mental health disorders before receiving a narcolepsy diagnosis.
The most common symptom of narcolepsy is excessive daytime sleepiness. Kids with narcolepsy also may have disturbed nighttime sleep and mood challenges. They tend to have anxiety issues, too.
“Children with narcolepsy may not be able to resist an urge to nap,” said Hillary L. Eichelberger, MD, a pediatric neurologist and sleep medicine expert at Children’s Hospital Los Angeles in California. “They can have difficulty focusing and concentrating in school.”
To help make school less stressful for kids, it’s important to work with the school staff to develop an educational plan so your child will thrive in the school environment.
It’s not surprising that children with narcolepsy tend to have difficulties at school. They may find it hard to stay awake in the classroom. They may also have issues with academic functioning, conduct problems, engaging in school activities, and making and keeping friends.
When it comes to school, narcolepsy is considered a disability. Children with narcolepsy may benefit from extra services or special education in school, Eichelberger explained. The services a child qualifies for will depend on how much their narcolepsy symptoms affect their school performance.
A good place to start is with your child’s teacher, Eichelberger advised. Explain your child’s diagnosis and why you feel they need some extra support.
Children with narcolepsy may legally qualify for disability services under Section 504 of the Rehabilitation Act or the Individuals with Disabilities Education Act (IDEA).
You can request an evaluation for a 504 plan or an individualized education plan (IEP). To do this, send a written request to your child’s principal or special education program consultant, Eichelberger advised.
Specific accommodations that may be helpful include extra time for tests, help with note-taking, and schedule modifications. Changing the schedule to allow tardiness and to move your child’s classes to their most alert times of the day can help, Eichelberger explained.
It’s also important for the school to make accommodations like allowing for short naps, not waking the student who falls asleep, allowing preferential seating and course selection, and permitting the child to stand, move around, and access water, as these can help the student stay awake.
In general, a 504 plan provides accommodations for kids in general education, while an IEP is more comprehensive and includes special education services.
If your child has a 504, there should be a plan for changes to the learning environment so your child can function better in school. With a 504, your child can continue to receive accommodations during post-secondary education.
With an IEP, there will be a plan for your child’s special education program while at school, along with individualized special education and related services your child needs. An IEP will be discontinued when the student graduates or ages out of the K through 12 education system.
Besides devising a plan for school days, it’s important to work with your child’s medical team to develop an individualized treatment plan for when they’re not in school.
Children with narcolepsy benefit from consistent sleep schedules, balanced diets, and regular exercise, Eichelberger explained. They should go to bed and get up at the same time every day and eat right, too.
A diet with few ultra-processed foods is especially important for children living with narcolepsy, Kothare noted. “Children with narcolepsy have a lower metabolic rate,” Kothare said. “It’s important for them to maintain a healthy weight and to exercise on a regular basis.”
A “power nap” on school days as well as home days can be helpful, Kothare said. “The nap should not last longer than 20 minutes or your child will feel groggy.”
Children with narcolepsy are at increased risk of some mental health conditions, including ADHD, depression, and anxiety. Establish care early on with a psychiatrist and psychologist or therapist, Eichelberger advised.
There are very good treatment options for children living with narcolepsy, Kothare noted. With a 504 or an IEP in place, your child will be able to receive extra support as needed in school.
Children with narcolepsy can live full, active lives, Eichelberger noted.
As the parent of a child with this health condition, you deserve some support as well. Reach out to a narcolepsy support network such as Narcolepsy Network and Wake Up Narcolepsy.
