Gabrielle Manus’ son dealt with puzzling symptoms for about 7 years before his doctor diagnosed him with narcolepsy at age 15. Prior to this, he fell asleep in class, fell asleep in the car, and took 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,” says Manus.
Through his support, activism, and determination to educate others, Manus’s son is now succeeding academically and socially in college. “The most important thing you can do for a child is to become an advocate for adaptations … and fight for your child,” he says.
Narcolepsy is a disorder that affects the brain’s ability to control sleep and alertness. Without proper treatment, it can hamper your child’s school, social, and personal life. It is important that you learn ways to support your child as they navigate through life with a neurological condition.
Understand your child’s diagnosis
As with any condition, it is critical that you understand how your child’s symptoms will affect his life. Narcolepsy caused Manus’s son to struggle in school, lose his energetic and active personality, and deal with cataplexy, which is the sudden and brief loss of muscle tone.
About 70% of children with narcolepsy have cataplexy. It is triggered by stress or strong emotions and can cause brief weakness in the knees, eyes, or jaw or more severe symptoms such as collapsing paralysis.
Your child may also have symptoms such as:
Excessive daytime sleepiness (EDS). “Excessive daytime sleepiness is the most common presenting symptom,” says Kiran Maski, MD, pediatric neurologist and sleep medicine specialist at Boston Children’s Hospital.
“Almost all narcolepsy patients have EDS as a primary complaint.” This is usually the first sign of narcolepsy in children and could affect your child during quiet times, such as in class, while reading, or while riding in a vehicle.
Sleep paralysis. This happens when you cannot move or speak just before falling asleep or immediately after waking up. These episodes generally stop within a few seconds or minutes.
Hallucinations Your child may have hallucinations just before falling asleep or just before waking up. Narcoleptic hallucinations often occur at the same time as sleep paralysis.
Sleep interrupted at night. Some children may have trouble sleeping through the night due to constant awakenings.
Automatic behaviors. Your child may fall asleep for several seconds but continue to perform routine tasks, such as writing. However, they will not remember doing these tasks.
Weight gain. This is both a symptom and a warning sign of childhood narcolepsy. It is common in the early part of the development of narcolepsy. At least 25% of children with this condition become obese.
Early start of puberty. If your child has narcolepsy, he may start puberty earlier than most boys.
But some of these symptoms are not that common. “Other symptoms such as sleep paralysis, hallucinations or interrupted nighttime sleep can present more variably in children,” says Maski. “They may have one or two episodes of sleep paralysis, but it is not a chronic problem on a weekly basis. … Disturbing sleep at night is usually something they wake up to but go back to sleep very quickly. They may not even perceive it as a problem. “
Understanding your child’s symptoms will allow you to take effective care of them. “That’s what you should do. You have to be strong, you have to investigate and you have to be able to defend your son, ”says Manus.
How Narcolepsy Can Affect Your Life
Anne Taylor’s daughter was 13 when they found out she had narcolepsy. Before that, doctors examined her for different conditions to define what symptoms she had. But for years, they couldn’t figure out what was wrong.
“They gave him an auditory processing disorder test and went into special education. That helped a bit, but he still had a hard time, “says Taylor. “In third grade, she started falling asleep at school. The teachers made 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. “
When Taylor’s daughter was 11 years old, she started gaining weight. “In one year, she had a drastic weight gain of like 30 pounds, which is a lot for a little girl,” she says. “She was starting to become a teenager. So psychologically for a girl right now it was very, very difficult. She became more isolated. “
For Taylor’s daughter, it was a challenge to keep up with friendships. “It was very difficult for her to socialize with other friends at school because she had to use all her energy trying to stay awake,” says Taylor.
It was hard to watch, says Taylor. “I could see that my son was falling apart in front of me. And there was really nothing he could do. I did not know what it was “.
Fortunately, after their 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 who surrounded her. “
Supporting 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 some classes of drugs that we use,” says Anuja Bandyopadhyay, MD, pediatric sleep and pulmonology specialist at Riley Children’s Hospital in Indianapolis.
“I usually have a good talk with families about the types of drugs and what their side effects are. The first line is usually to use a stimulant. … If this doesn’t work, then the next option is to use a drug that promotes wakefulness. Those have also had very good benefits. If the patient has primary cataplexy, then we would have a few options. One of them is the use of antidepressants. “
Your doctor may prescribe amphetamine stimulants such as methylphenidate (Ritalin) for your child. They might also suggest a drug that promotes wakefulness like armodafinil (Nuvigil) or modafinil (Provigil).
Sodium oxybate (Xyrem) is the only FDA-approved drug for daytime sleepiness associated with cataplexy and narcolepsy in young children. But your doctor may also treat your child’s cataplexy with antidepressants such as:
Inform your schools. “For many children (with narcolepsy), I can easily see how they would be labeled lazy. From not wanting to concentrate, not answering the teacher, not being able to participate in the social group of the class. But those could be some of the signs and symptoms of narcolepsy, ”says Taylor. “I hope that by talking about this, more people know what narcolepsy is.”
To help teachers understand your child’s condition, it is best to educate them yourself. “The best thing I can tell parents is to bring all the information,” says Taylor. “Copy it for each teacher in the meeting. … Contact the special education department when the school year begins. The more we educate ourselves about our child’s illness, the easier it will be for us to teach everyone else. “
Be realistic. “We, as parents, have to adjust our expectations of our children. … My expectations of him at school are different, ”says Manus. Narcolepsy is a lifelong sleep disorder, but the condition does not worsen with age. By setting manageable goals for your child, you can be successful and improve symptoms over time.
Talk to a therapist. Narcolepsy is a chronic disease; there’s no cure. “Making sure that [your children] understanding that and having the resources to cope with a chronic disease is really important, ”says Maski. “Whether it’s a counselor, a local psychologist, or a cognitive behavioral therapist, these are very valuable resources to be able to provide for children.”
Help them find partners. It is very helpful to join support groups, ”says Maski. “There are several advocacy groups like Wake Up Narcolepsy, Narcolepsy Network, Project Sleep, and Hypersomnia Foundation that have amazing resources. At the local level, ask your doctor if there are other patients to meet with 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 a scheduled 30-minute nap, ”says Bandyopadhyay. These naps can help your child stay cool and decrease sleepiness for a couple of hours.
Keep active. “One of the things that I have found to be incredibly helpful is exercise, [my son] stay active, ”says Manus. 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 bedtime and wake-up time. This will help you establish a routine and get the most sleep each night.
Limit caffeine. Better to stay away from caffeine and other stimulants later in the day. “We know that although the patient is drowsy from narcolepsy, some of these children may also suffer from insomnia at night. And when that happens, it shortens your sleep time even more. It’s a vicious cycle, ”says Bandyopadhyay. Caffeine at night will only continue to make sleep difficult.
Ensure your safety. Keep your child out of situations such as driving, cooking, or swimming if he may lose alertness. Make sure your child is fully awake and attentive before he does anything potentially dangerous.
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