We know getting used to wearing a mask during sleep can be difficult. But it remains vital to help save someone from dangerous and even deadly consequences of sleep apnea. Using positive airway pressure (PAP) therapy is a significant protective factor in reducing risk for sudden unexpected death during sleep in FD. We would like the share the following recommendations for helping you or your loved one wear CPAP or BiPAP (common types of pressure therapy prescribed). Please note that these suggestions apply to many ages, and some recommendations here are written for very young children. Please consider the ones that apply to you or your child’s age and developmental ability.
Getting used to the mask and machine:
- Start practicing to wear the mask when the user is in a good mood during the day, 2-3 times per day. You don’t even need to turn it on.
- Let the user touch and hold the mask while you provide positive feedback, also try placing the mask on a stuffed animal or doll.
- Decorate the machine with fun stickers (but not on the actual mask), and you can even give the machine a name to make the machine less scary.
- Have other family members wear masks too, or silly noses, so the user doesn’t feel so alone.
- Let the machine run sometimes near the user, even if it’s not on, to desensitize them to the noise.
“Success is the sum of small efforts, repeated day in and day out.“
–Robert Collier (1885-1950)
Start using the mask for sleep:
- Start very slow, and gradually build up to the goal of wearing it a whole night. Success is even wearing it for 30 seconds, 1 minute, 10 minutes initially. Start with small and manageable goals. Then you can increase to 30 minutes for a few nights, then an hour, and so on. Wearing it for so little time may seem pointless on the surface, but it’s not pointless when the eventual goal is increasing it to at least several hours of the night. And even a few hours of successful use is better than none. Celebrate small goals for the user, and yourself.
- Always approach the user with the mask in sight, never try to put it on quickly from the side or behind, this is only going to raise fear and non-compliance. Apply the mask at first with no tubing attached, then you can attach tubing without attaching the machine, eventually you can start using the machine.
- A machine with a “ramping” feature is very valuable in desensitization. This is a feature that allows airflow to be very gentle at first (not the prescribed titration settings which can feel shockingly strong), and will slowly “ramp up” when the user is already asleep. If your machine does not have a ramping feature, call your insurance company to discuss the need for one.
- Let the user know the mask might tickle him or her at first but soon they will feel fine.
- Use distraction. Keep eye contact and keep talking, which can work wonders for distraction. When they starts wearing it for longer periods of time, try a favorite distraction like a favorite book or movie.
- Anticipate their resistance and your own frustration with this resistance, and keep the goal of improving health in mind when you do become frustrated.
- Make it as nice for the user as possible. Stay calm, and provide plenty of encouragement and positive feedback to the user.
- Be gentle but firm, in this mission. “This is what we have to do”, “You must wear this mask (or fun name you’ve given the machine), look, we’re all wearing masks” (point to own mask). Encourage the user to breath in and out.
- Praise even small improvements, like when the user is awake but relaxed in the mask.
- If you move on to a higher step but it is not successful (like goal of 30 minutes), go back a step to where they were successful and try it for a few more nights while praising. Keep the ultimate goal in mind.
- Working up to wearing it at bedtime versus just trying it while awake can take a month or longer. Be patient, calm, and encouraging. Give praise for small success. You can use a star sticker chart for recording success and praising her, with prizes for goals (10 minutes with the mask on- prize! 2 weeks of starting to wear the mask- prize!). Prizes don’t have to be toys, they can be a horse-back ride on dad, a trip to the park, etc.
- Eventually make the process part of a normal bedtime routine of brushing teeth, getting on pajamas, reading a bedtime story.
Remember to replace the mask every 6 months or sooner for breakdown. Cushions can be changed every month. Keep in mind, for insurance to continue to pay for the use of the machine, they usually require reports showing consistent use. This can be explained as a desensitization process, as long as there is evidence of it occurring.
A children’s book is also available for free and is completely online by following this link “The Magical Mask”, which was created to encourage very young children to not be afraid of and accept their CPAP masks and is a lovely story to share with your loved one.
Other Useful Websites:
- The following article on CPAP use shows effects even with limited time on CPAP such as a few hours:
Carol Marcus, Effects of Positive Airway Pressure Therapy on Neurobehavioral Outcomes in Children with Obstructive Sleep Apnea. American Journal of Respiratory and Critical Care Medicine, May 1, 2012; 185(9): 998-1003.
We thank and applaud you for your continued efforts to use nightly PAP therapy. Keep up the great work!
“It does not matter how slowly you go so long as you do not stop.“
–Confucius (551-479 BC), philosopher
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