We were sitting together having breakfast on a Saturday morning. My friend Ann* and I have a thing for breakfast. We’ll spend hours chatting over coffee and pancakes as our kids battle with action figures or fiddle in coloring books. Her son is five years older than my daughter, but they still manage to play together really well. I’m sure it’s just out of habit. Suddenly, Ann’s son Jake* just lays his head down in his mother’s lap and falls asleep.
“Late night, huh,” I asked Ann. Normally, I would have assumed that like me, Ann hadn’t been able to get her child to fall asleep, had acquiesced to some late movie since there was no school tomorrow. “No,” she responded, “he was asleep at normal time.” I didn’t say anything.
We had both begun to notice that Jake could fall asleep at any time of day, no matter who was present or what exciting things were going on around him. Jake was always a really active child. He played hard. We attributed it to the idea that he just exerted as much energy as possible and then crashed. Recently however, Ann admitted that she had become nervous. Jake’s teachers had begun to complain that he was falling asleep during school, no matter how early he went to bed at home.
Just around the time that Ann was getting really worried about Jake’s sleep habits, her son took a topple down the stairs. There were no broken bones, just a couple bruises, but the 9-year-old began complaining about headaches. Obviously, they took him the doctor, made sure there was no concussion, but the headaches continued. Finally Ann, her husband, and Jake ended up at a neurologist’s office.
After multiple appointments and tests of every kind, the neurologist asked for Jake to participate in a sleep study. That’s when my friend figured out that her little boy had narcolepsy.
While most people don’t think of narcolepsy as affecting children, it’s symptoms normally appear any time between ages 7 and 25. In rare cases, they show up even younger. Looking back, Ann wondered how long it had been a serious problem before she realized. “He was always a great sleeper,” she explained. “I mean, when your kids are young, you feel lucky that they sleep so soundly. I remember having to give up his second nap when he started kindergarten and how hard it was for him. We just didn’t realize it was that abnormal.”
The diagnosis, while a surprising one, brought a lot of light to other issues that Jake had been having. Problems paying attention at school, problems with behavior, they made more sense once the family understood Jake’s disorder.
“My doctor described it like this and it made a lot of sense to me,” Ann explained. “It’s like when you’re sitting in a meeting for hours and hours. A boring meeting. If you start to get drowsy, what do you do? You get up and move around. You have a harder time focusing on the work you’re supposed to be doing. You doodle or let your mind wonder. Jake has been walking through life like that all the time. He feels like that constantly. And it makes it hard for him to focus, especially at school.” Once they spoke to their teacher about Jake’s issue, they all started working on a plan to help him adjust and find the right balance. They talked to Jake about taking naps when he really needed them. They created a very scheduled routine to help him cope. And, their doctor prescribed Jake with a medicine called Nuvigil, which helped him stay awake throughout the day.
At first, the family was given samples of the product while the doctor sought approval from Ann’s insurance for the medication. “It was amazing,” Ann told me. “The first day he was on this medicine, his teacher told me that she could see the difference. It was easier for him to read. He spoke more clearly. At home, he was just a different kid.”
They knew that no drug worked miracles and that they all had their side effects. Ann researched her new wonder-drug. She set up a schedule to have her son’s heart monitored every three months, because there’s a small but scary chance that the stimulant will do heart damage. “That’s terrifying,” she told me. “Of course, that’s scary. There’s so much that’s scary. But Jake wouldn’t make it through school without some type of help. He wouldn’t be able to focus long enough to learn anything.”
Then, Ann and her husband encountered an issue they hadn’t even considered. Their insurance refused to cover the $600/month prescription because Nuvigil is not FDA-approved to treat children. There’s just one little problem with that. There is no FDA-approved drug to treat narcolepsy for children. Nothing at all.
I spoke to neurologist, Dr. Erin Stevens, about this lack of medication for young kids with this condition. “Well, there aren’t a whole lot of options for narcolepsy in general. There are only a couple options for people who have narcolepsy, and it’s a really under-diagnosed issue,” she explained. “Nuvigil, in particular, was just approved by the FDA in 2007. And the only studies with children had a substantial issue with rashes. Once they found that, I’m assuming they just scrapped the testing for kids and only worried about getting it certified for adults. But since there’s nothing else as effective, doctors just prescribe it anyways and families have to decide if they can pay for it out of pocket. Some can, some can’t.”
Ann’s insurance suggested that she try two other medications for her son. Both were less expensive and more widely available than Nuvigil, though neither was approved for children either. The problem was that they weren’t technically narcolepsy medications. These drugs were narcotics used with kids who have ADD.
“I wasn’t happy about it, because my son doesn’t have ADD. And these narcotics are addictive. But the insurance said we had to try them for three months each, so that’s what we did,” Ann told me.
As a person who saw Ann and Jake on a regular basis, I can personally attest to the way that the first drug affected Jake. He lost his appetite pretty substantially. A little boy who was already extremely skinny, he lost an additional five pounds. That means a lot to a child who was already small. “Our doctor decided that the medicine wasn’t healthy for Jake. She was afraid he would miss his next growth spurt at the rate he was going,” Ann admitted.
After three months of the first, they moved on to option number two. ‘This was the worst,” my friend admitted. “Jake had these horrible nightmares. They were like hallucinations. He thought the devil was coming to get him. It was awful. And then he started to develop these splitting headaches. He would wake up in the morning and tell me that it felt like someone was driving a nail straight into his forehead.” Those were a long three months for my friend’s family. They struggled to help Jake cope with the medicine. But the dreams and the headaches made it almost as difficult for Jake to get restful sleep.
It was time to go back to the insurance agency. They applied again to get Nuvigil covered under their insurance. Again, they were denied. “The drug is not approved to treat children,” they were told.
Ann tried to do everything she could. She contacted the distributor of the medicine to see if they had discounts available. She signed Jake up, just in case the company ever does decide to run a study on children again. She spoke to her doctor about what else could be done. And then, she prepared to cough up another $600 for 30 pills that help her son make it through the school day.
“It would be easy to blame the insurance,” Ann told me, much more rational and fair than I am. “Sometimes, I get angry with them. Mostly because these substitute narcotics they agree to cover aren’t approved for children either. They’re just cheaper. But really, it’s not just their fault. Why isn’t there a drug available to treat to kids? I guess there isn’t enough demand for it to make money?”
Of course, pharmaceutical companies are businesses first and healthcare treatment second. But given that one in 3,000 people is estimated to have narcolepsy, and those patients begin to see symptoms starting at age 7, it seems like there would be enough people to make the medicine worthwhile.
In fact, when I think about the substitutes suggested and the way the illness manifested for Jake, it’s possible that there are a lot of children currently on ADD medicine that might benefit from further examination. Dr. Stevens admits, “They can look the same to someone who is eager to medicate instead of find the root of the problem. Lack of focus, bouncing around a lot, those are pretty classic ADD symptoms,” she agrees. So could some of those children have narcolepsy? “Of course it’s possible. Narcolepsy isn’t ever going to be as common as ADD and ADHD. But it is possible that without the sleep studies, you would diagnose narcolepsy as ADD. Hopefully doctors will be looking for other signs, like lots of napping and sleeping very soundly. It’s not always as dramatic as just dropping over in the middle of a sentence, like some people assume,” she adds.
But that sudden collapse is a possibility, and a concern for parents. “Of course, without the medicine I worry that Jake will be riding his bike around the neighborhood and just doze off. Those episodes can get worse the older you get,” Ann confides. The idea of your child just falling asleep while swimming or doing any physical activity would definitely be scary.
Right now, Ann is writing more letters to her insurance. “The doctor isn’t allowed to contact them, or the teachers,” she tells me. “It has to be me. I don’t know if they just hope we’ll give up, but I have another letter in. I’m waiting for a response.” Of course, all that waiting is more time that Jake either has to survive without medicine or Ann and her husband have to budget for another $600. “It’s a lot of money, but if we have to pay it, we will,” Ann says. Thankfully, she and her husband are in a position where that expenditure is possible. Not every family would be able to rearrange enough of the family budget to account for over $7000 a year in prescription drug costs.
For the families that can’t? “They normally stick with the ADD medicine. The problem is that it takes a lot of it. And it’s more addictive if not being used to actually treat ADD,” Dr. Stevens tells me. Those narcotics can join the list of addictive medications now being used to treat children, like Oxycontin.
For now, Jake is lucky. He has parents who can afford his Nuvigil, even if their insurance refuses to cover it. Other kids aren’t so fortunate. And we should remember that every child with narcolepsy is being treated with medication that is not approved by the FDA, because for these kids, there’s no such option.