“Narcolepsy” was a word Maria had never heard before (Names have been changed).
Maria’s 12-year old son Brian had been doing badly in school. He would fidget. He couldn’t pay attention. Brian’s teachers were sure he had ADHD. They insisted that Brian get a prescription for medication. At the pediatrician, Maria mentioned something that caught the doctor’s attention:
“He’s really really tired all the time”
This important observation led to a referral to a clinic that specialized in narcolepsy.
What is Narcolepsy?
It is a brain disorder. In particular the part of the brain affected controls sleepiness and wakefulness. People with narcolepsy suffer from a number of disturbing symptoms (below). All these relate to the brain’s difficulty controlling sleep.
- Excessive Daytime Sleepiness. This is the most common feature of narcolepsy. The best way to describe EDS is that it makes you feel the way a “normal” person feels after being awake for 48-72 hours. EDS causes people to fall asleep at the often the worst times, for example, trying to drive. “Sleep attacks” also occur while speaking and even while eating.
- Cataplexy. Sudden brief loss of muscle tone. These attacks are believed to represent the sudden onset of a rapid eye movement (REM) type of sleep at the wrong time of day. For example, a sufferer might collapse at work, or in school. One of the oddest features is that attacks tend to be triggered by strong emotions, especially positive emotions such as love. It is rare in children, at least in the early stages of the disorder.
- Hypnagogic hallucinations. These are vivid, dream-like visions that occur upon falling asleep and upon waking up. Sufferers can have several hallucinations per day. These have been reported in children as well.
- Sleep paralysis. This is the inability to move when waking up or falling asleep. The sufferer can still breathe and may be conscious, though unable to move.
- Fragmented sleep. People with narcolepsy don’t have normal sleep patterns at night. This makes sleepiness during the day even worse.
Narcolepsy in Children
Brian had a typical picture of childhood narcolepsy. In children, hyperactivity is common. EDS is also common, but often overlooked. For this reason, narcolepsy is sometimes mistaken for ADHD. Coincidentally, ADHD medications are sometimes used to treat narcolepsy (see below). When the behavior improves, parents tend to believe the diagnosis of ADHD was the correct one. The true diagnosis is then delayed.
Children developing the disorder often start doing badly in school. Some have behavior problems. Others start developing strange movement patterns that look like tics. These often disappear when the more classic symptoms begin to appear.
Most people don’t know about narcolepsy. So children don’t get the right diagnosis. These children need the help of a sleep specialist who understands the disorder and how to make the diagnosis. The child must perform a sleep study in sleep lab. The doctors may want to perform certain laboratory tests including a spinal tap.
There is no cure for narcolepsy. Scientists have only recently begun to discover clues that may lead to medical treatment. But these are several years in the future. For now, we can only manage symptoms. Having a correct diagnosis is essential.
- Regular sleep schedule. Sound familiar? It’s the remedy for most sleep problems! This may not make sense for a person who cannot control their own sleep. However, setting a regular bedtime appears to help. So does setting regular nap times.
- Emotional support. Too often forgotten, support for the entire family can be enormously helpful.
- Documentation for special academic needs. Many states mandate that accommodations be made for students with documented medical problems.
- Questioning children about high-risk behaviors such as alcohol and drug use. These make narcolepsy worse, and must be limited (better, eliminated).
Narcolepsy is the type of disorder that is best handled by medical professionals at first. If you have any concerns that you or your child may have it, please consult a physician.
After doctors make the diagnosis, you will need to manage the child’s sleep and naps. That’s where I come in. Feel free to contact me at any time.
Here’s what they’ve been saying about “Sleep, Baby!”