A Parent’s Guide to Talking About Narcolepsy With Babysitters

Narcolepsy is a sleep disorder that makes it hard to stay awake. Children with narcolepsy can have trouble staying awake during the day. They may also have trouble sleeping at night. This can make a parent feel worried about leaving their child with a babysitter. It is important to know how to talk about your child's narcolepsy with new caregivers.¹

Explaining narcolepsy to a babysitter

When talking to a babysitter about your child's narcolepsy, you must be clear about your child’s specific needs. Do not assume they know anything about narcolepsy.

Here are some tips on how to explain the condition in a way they will understand.

Start with the basics

Tell the babysitter that your child has narcolepsy. You can say something like, "My child has a sleep disorder called narcolepsy. It means their brain does not always know when to be awake or when to be asleep." This helps them understand that it is a medical condition.¹

Explain the symptoms in simple terms

Give the babysitter examples of what they might see while caring for your child. For excessive daytime sleepiness, you can say,"You might notice that my child gets very sleepy. They might suddenly fall asleep, even if they are in the middle of playing a game or watching a movie. It is not because they are bored or tired from staying up late. It is just what their body does."¹

If your child has cataplexy, you can explain it like this: "My child has something called cataplexy. It is a sudden loss of muscle control. It is often triggered by strong emotions, like laughing or being surprised.¹

For example, if they laugh really hard at a cartoon, you might see their head drop or their knees get weak. The important thing to know is that they are still awake, and they can hear you. Just help them sit down, and they will be fine in a few moments."

For sleep paralysis, you can say, "My child might sometimes wake up and not be able to move or speak for a short time. This is called sleep paralysis. It can be scary, but it is not dangerous. It will pass in a minute or 2."

Create a plan together

Talk to the babysitter about your child’s sleep schedule. Discuss when and where your child should take their naps.

Talk about what to do in an emergency. Make sure to give the babysitter a list of emergency contacts. This should include your doctor.

Discuss your child’s specific triggers

Does your child have cataplexy? If so, tell the babysitter what triggers it.

Triggers can include excitement, laughter, or anger. Make sure they understand how to handle an episode. You can also share what an episode may look like. This can help the babysitter feel more prepared.¹

Give them a medication schedule

Your babysitter may not need to help your child take their medicine, but if they do, it is a good idea to give them the information, should they need it. Leave a list of your child’s medicines, where they are located, and when they take them. Consider including a written schedule of when your child takes their medicine.

Be open to questions

The babysitter may have questions about narcolepsy. Answer their questions honestly and patiently. This will help them understand your child’s needs better. It will also help them feel more comfortable while taking care of your child.

Talking about your child's narcolepsy can be challenging. But it is one of the most important things you can do for your child. Giving your babysitter the information they need can help keep your child safe.