My Insurance Refuses To Pay For My Son’s $600/Month Narcolepsy Medication

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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.”

(Photo: simoly/Shutterstock)

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