Gabrielle Manus’s son dealt with puzzling symptoms for about 7 years before his doctor diagnosed him with narcolepsy at age 15. Prior to this, he would fall asleep in class, doze off in the car, and take frequent naps despite getting enough rest at night. “We got him tested, and he went from academic probation to being on the Dean's list,” Manus says.
Through her support, activism, and determination to educate others, Manus’s son is now succeeding academically and socially in college. “The most important thing that you can do for a child is become their advocate for accommodations ... and fight for your child,” she says.
Narcolepsy is a disorder that affects the brain’s ability to control sleep and alertness. Without proper treatment, it can hinder your child’s school, social, and personal life. It’s important that you learn ways to support your child while they navigate life with a neurological condition.
Understanding Your Child’s Diagnosis
As with any condition, it’s crucial that you understand how your child’s symptoms will affect their life. Narcolepsy caused Manus’s son to struggle in school, lose his energetic and active personality, and deal with cataplexy, which is the sudden, brief loss of muscle tone.
About 70% of children with narcolepsy have cataplexy. It’s triggered by stress or strong emotions and can cause brief weakness in the knees, eyes, or jaw or more intense symptoms like paralysis with collapse.
Your child might also have symptoms like:
Excessive daytime sleepiness (EDS). “Excessive daytime sleepiness is the most common presenting symptom,” says Kiran Maski, MD, a pediatric neurologist and sleep medicine specialist at Boston Children’s Hospital.
“Nearly every patient with narcolepsy has EDS as a core complaint.” This is usually the first sign of narcolepsy in children and might affect your kid during quiet moments, like in class, while they read, or while they ride in a vehicle.
Sleep paralysis. This happens when you’re unable to move or speak just before you fall asleep or right after you wake up. These episodes usually stop within a few seconds or minutes.
Interrupted sleep at night. Some children may have trouble sleeping through the night due to constant awakenings.
Automatic behaviors. Your kid may fall asleep for several seconds but continue to do routine tasks, like writing. They won’t have any memory of doing these tasks though.
Weight gain. This is both a symptom and warning sign of childhood narcolepsy. It’s common in the early part of narcolepsy development. At least 25% of children with this condition become obese.
Early start of puberty. If your child has narcolepsy, they may begin puberty earlier than most children.
But some of these symptoms aren’t as frequent. “Other symptoms like sleep paralysis, hallucinations, or disrupted nighttime sleep might present more variably in children,” Maski says. “They may have one or two episodes of sleep paralysis, but it’s not a chronic issue on a weekly basis. ... Disruptive sleep at night is usually something where they wake up but return back to sleep very quickly. They may not even perceive that as a problem.”
Understanding your child’s symptoms will allow you to effectively care for them. “That's what you'd have to do. You have to be strong, you have to do your research, and you have to be able to advocate for your child,” Manus says.
How Narcolepsy May Affect Their Life
Anne Taylor’s daughter was 13 when they found out she had narcolepsy. Before that, doctors tested her for different conditions to define the symptoms she had. But for years, they were unable to decipher what was wrong.
“She was tested for auditory processing disorder and got into special education. That helped a little bit, but she still had a hard time,” Taylor says. “In third grade, she started falling asleep in school. The teachers would have her walk around a table to force her to wake up. That of course, made her stand out from the group of friends. It made her feel different.”
By the time Taylor’s daughter was 11, she began to gain weight. “Within a year, she had a drastic weight gain of like 30 pounds, which is a lot for little child,” she says. “She was starting to become a teenager. So psychologically for a girl at this time it was really, really difficult. She became more isolated.”
For Taylor’s daughter, it was a challenge to keep up with friendships. “It was really hard for her to socialize with other friends in school because she just had to use all her energy on trying to stay awake,” Taylor says.
It was difficult to watch, Taylor says. “I could just see that my child was falling to pieces in front of me. And there was really nothing I could do. I didn't know what it was.”
Thankfully, after her daughter received a proper diagnosis, Taylor and her husband were able to help their daughter reach her potential. “Once we finally got to the right medication regimen, she improved tremendously and is thriving. ... She wouldn't be where she is today if it weren’t for the special education teachers that surrounded her.”
How to Support Your Child With Narcolepsy
There are many things you can do to help your child even after diagnosis and treatment:
Find the right medications. “There are a few classes of drugs that we use,” says Anuja Bandyopadhyay, MD, a pediatric sleep and pulmonary specialist at Riley Children’s Hospital in Indianapolis.
“I usually have a good chat with the families on kinds of medications and what their side effects are. The first line usually is to use a stimulant. ... If this is not working out, then the next option is using a wake-promoting drug. Those also have had very good benefits. If the patient is having primary cataplexy, then we would have some options. One of them is using antidepressants.”
Sodium oxybate (Xyrem) is the only FDA-approved drug for both cataplexy and narcolepsy-associated daytime sleepiness for young children. But your doctor may also treat your child’s cataplexy with antidepressants such as:
Inform their schools. “For a lot of children (with narcolepsy), I can easily see how they’d be labeled as lazy. From not wanting to concentrate, not answering the teacher back, not being able to participate in the social group of the class. But those could be some of the signs and symptoms of narcolepsy,” Taylor says. “I hope by talking about this, more people will know about what narcolepsy is.”
To help teachers understand your child’s condition, it’s best to educate them yourself. “The best thing that I can say to parents is bring all the information,” Taylor says. “Copy it for every single teacher that's in the meeting. ... Reach out to the special education department as the school year starts. The more educated we become about our child's disease, the easier it is for us to teach everyone else.”
Be realistic. “We as parents have to adjust our expectations of our children. ... My expectations of him in school are different,” Manus says. Narcolepsy is a lifelong sleep disorder, but the condition doesn’t get worse with age. If you set up manageable goals for your child, they’ll be able to succeed and improve their symptoms overtime.
Talk with a therapist. Narcolepsy is a chronic disease; there's no cure. "Making sure that [your children] understand that and have resources for coping with a chronic condition is really important,” Maski says. “Whether it's a guidance counselor, a local psychologist, or a cognitive behavioral therapist, these are very valuable resources to be able to provide kids.”
Help them find peers. It's very helpful to join support groups,” Maski says. “There's a number of advocacy groups such as Wake Up Narcolepsy, Narcolepsy Network, Project Sleep, and Hypersomnia Foundation that have amazing resources. At a local level, ask the physician if there's other patients to meet or a local support group.”
Encourage naps. “Schools sometimes give the opportunity to take a 30-minute nap. When [your child] is at home, they can take like a 30-minute scheduled nap,” Bandyopadhyay says. These naps can help your child stay refreshed and lessen their sleepiness for a couple hours.
Stay active. “One of the things that I have found that is incredibly helpful is exercise, [my son] keeping active,” Manus says. Regular exercise at least 4 to 5 hours before bedtime can help children feel more alert during the day and sleep better at night.
Get enough sleep. Your child should follow a regular sleep and wake schedule. This will help them set a routine and get maximum sleep each night.
Limit caffeine. It’s best to stay away from caffeine and other stimulants later in the day. “We know that even though the patient has sleepiness due to narcolepsy, some of these children can also suffer from insomnia at night. And when that happens, that shortens their sleep time even more. It's a vicious cycle,” Bandyopadhyay says. Caffeine in the evening will only continue to hinder sleep.
Ensure their safety. Keep your child away from situations like driving, cooking, or swimming if they may slip out of alertness. Make sure your child is fully awake and attentive before they do anything potentially dangerous.