Sleep Disorders Center

The CPAP Handbook

The CPAP Handbook

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The CPAP Handbook

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Contents

CPAP Use in Children and Teens ………………..…….……..………....…… 5

Goals for Home CPAP …………………………………..…….……..………....…… 7

CPAP Home Set-up Schedule …………….…………….….…….….…………. 8

Tips for Parents and Caregivers Using CPAP …..………….…..…… 10

CPAP Masks ……………………………………………….………………..…….…………. 11

Wearing the CPAP: Common Problems and Solutions .......... 12

CPAP Diary of Use …………………………………………….…………..……….…… 14

Phone Numbers for Your Child’s CPAP ………………..… back cover

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The CPAP Handbook

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Continuous Positive Airway Pressure (CPAP) Use in Children and Teens

What is CPAP? CPAP stands for continuous positive airway pressure. It is used to help the airway stay open during sleep. The CPAP machine, about the size of a shoebox, creates air at different pressures. Room air is directed through a hose to a mask. The mask is worn over the nose or over the nose and mouth. It is held in place by soft straps that fit around the head.

Why is CPAP needed? CPAP is used to treat obstructive sleep apnea. The air opens the space in the back of the throat so that the child can breathe better while sleeping.

What is obstructive sleep apnea? Apnea is a Greek word that means “without breath.” Obstructive sleep apnea is caused by intermittent collapse of the airway during sleep.

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How does obstructive sleep apnea affect children and teenagers? Obstructive sleep apnea affects more than 3% of all children. Symptoms in sleeping children are similar to those seen in adults, and include:

• Snoring • Restless sleep • Breathing pauses, with or without gasping or choking or nighttime waking

Children may not show such obvious signs, so a sleep study is done to diagnose sleep apnea in children.

During the day, children with sleep apnea may be sleepy. In many cases, children may have high energy, be hyperactive, become easily distracted and may exhibit mood swings.

Depression, learning disabilities, poor school performance and mood swings may all be signs of poor sleep. Untreated sleep apnea can lead to high blood pressure and impacts heart health and general health.

When CPAP is prescribed, it is important to use it on a regular basis. With family support and help from sleep clinic staff, using CPAP can become a normal part of your child’s sleep routine and help keep your child happy and healthy.

Sleep disorder resource National Sleep Foundation www.sleepfoundation.org

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Goals for Home CPAP

Weekly success check points

Week 1 By the end of the first week with their CPAP, your child can tolerate the CPAP mask put on their face for 1 to 3 minutes without being connected to the machine.

Week 2 By the end of week 2, your child can tolerate having the mask on for 10 to 30 minutes, attached to the machine with the air blowing.

Week 3 By the end of week 3, your child can fall asleep with the mask on and CPAP machine motor running.

Week 4 By the end of week 4, your child is falling asleep wearing the CPAP with mask and sleeping with it on for 4 hours or more every night. The machine is set at their correct flow setting and motor is running.

Some children will tolerate these steps and reach the goal much more quickly.

If your child is having trouble with these steps or for any questions:

Please call the CPAP Coordinator or Program 206-987-8938

Within a month, we would like your child to be able to:

• fall asleep with the CPAP and mask on their face 7 nights a week

and

• sleep through the full night with it on

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CPAP Home Set-up Schedule

Task Date done

Start _________ (date)

CPAP prescribed and air flow set Your CPAP setting ________

_________ (date)

CPAP booklet given _________ (date)

2 weeks later

Machine set up in home by Home Care • Home Care company name

___________________________ • Home Care company phone

___________________________

_________ (date CPAP in home)

Within 2 weeks of home set-up

CPAP coordinator calls you to check on your home set-up

_________ (date)

2-month follow-up

• Follow-up visit to sleep clinic • Most insurance companies require

check at 2 months from initial prescription

Your CPAP setting ________

__________ (Approximate date of follow-up appointment in CPAP clinic)

__________

(Check and record appointment date when scheduled)

Friendly reminder:

Please bring all your CPAP equipment to every sleep clinic appointment and sleep study:

• mask • CPAP machine • CPAP booklet

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CPAP titration study (if needed) __________ (Approximate date)

__________ (Check and record appointment date when scheduled)

Or

Does not apply

4-month follow-up

Follow up visit in sleep clinic Your CPAP setting ________

__________ (Approximate date)

__________ (Check and record appointment date when scheduled)

6-month follow-up

Follow up visit in sleep clinic Your CPAP setting ________

__________ (Approximate date)

__________ (Check and record appointment date when scheduled)

Every 3 to 6 months as needed

• Sleep studies as recommended throughout

• Follow up in sleep clinic every 3 to 6 months as recommended thereafter

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Tips for Parents and Caregivers of Children Using CPAP 1. Start using continuous positive airway pressure (CPAP) for short periods

during the day while watching TV or reading. 2. Use the “ramp” setting on your unit so that the air pressure increases

slowly to the proper level. 3. Use CPAP every night and for every nap. Using it less often reduces the

health benefits and makes it harder to get used to it. 4. Newer CPAP models are almost silent. If the sound of your machine is

bothersome, place the unit under the bed to dampen the sound. 5. Make small adjustments to the mask, tubing, straps and headgear until

you get the right fit. 6. Use saline nasal spray to ease mild nasal congestion. You can make this at

home by mixing ¼ teaspoon of salt with 1 cup of warm water. Or, it can be purchased at any drug store without a prescription.

7. Ask your healthcare provider about taking a nasal decongestant to relieve more severe nasal or sinus congestion.

8. Use a heated humidifier that fits your CPAP model to enhance breathing comfort.

9. Try a system that uses nasal pillows if traditional masks cause problems. 10. Clean the mask, tubing and headgear once a week. 11. Check and replace the filters for your CPAP unit and humidifier on a

regular basis. 12. Work closely with your sleep doctor and CPAP supplier to make sure that you

have the machine, mask and air pressure setting that works best for your child.

• Be consistent. Establish and maintain a nap and bedtime routine. Make sure all caregivers know and follow the nap and bedtime routine.

• Remember your role. It’s your role to set and enforce appropriate rules for your child. Your child may not like wearing the CPAP mask. Don’t take your child’s refusal to wear the mask personally.

• Praise your child. As your child adjusts to sleeping with CPAP, offer praise. Don’t use CPAP as a punishment.

• Ask for help. Try to anticipate how your child will react to CPAP. Talk with the sleep clinic staff for suggestions.

Please contact the Children’s Hospital Sleep Disorder Center at 206-987-8938 if you have questions or need help trying these tips. The home care company that provides the CPAP equipment can also answer any questions or concerns you may have about the equipment.

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Examples of CPAP Masks

FitLife Go Life

Mirage Quattro FX Swift FX

TrueBlue

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Wearing the CPAP: Common Problems and Solutions

Concern Possible cause Ways to help the problem

Stuffy nose • Normal for the first 2 weeks of using CPAP

• CPAP air may be dry

• Make sure humidification is turned on. Increase humidifier level to moisten air.

• Use nasal saline spray before bedtime (can get this over the counter).

• Sleep provider may need to prescribe antihistamine or nasal spray to decrease inflammation.

• Should improve over time if just related to air flow of CPAP

• Call the sleep center or CPAP coordinator if symptoms do not improve.

Mask is leaking • Mask too large • Head gear straps may

be too loose or not properly adjusted

• Your home care company or CPAP coordinator can help you at any time you have concerns with mask leak.

• Please get this problem taken care of right away so your child will not become frustrated and quit using the machine.

Skin rash or irritation

• Normal oil from skin • Mask has poor fit • Straps too tight • Mask not clean

• Wash face with mild soap every night and dry well.

• Make sure mask is properly cleaned and dry when putting on at night.

• Speak to home care company about mask fit, or need to change to different mask (use of a protective barrier may help, i.e., Gecko, REMzzz).

• Adjust headgear straps so they are equal on both sides and so mask has seal on face but is not too tight-fitting.

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Concern Possible cause Ways to help the problem

Dry mouth • Mouth breathing at night

• May need a chin strap if using nasal mask. • May need a full-face mask. Try to add or

increase heated humidification.

Dry or irritated eyes

• Mask leaks • Mask too tight

• Call home care company to inspect mask fit. • Readjust headgear straps to change mask

position to keep air from leaking into eyes. • Make sure mask is not cracked or broken.

Replace mask if needed. Usually a good idea to ask home care company for new mask every 6 months.

Difficulty breathing air out (exhaling) against CPAP air

• Adjusting to breathing against CPAP pressure, normal in the beginning

• Use ramp option of CPAP. If unsure of how to do this, contact your home care company.

• Try having child wear the machine for short periods when awake to get used to breathing with machine on.

Stomach pain or gas (Gas in stomach is called aerophagia)

• CPAP pressure may be too high

• Swallowing air as you adjust to breathing with CPAP on

• Try ramping up pressure in the beginning of the night and monitoring pressure requirement.

• Weight loss in your child can help. This could reduce the pressure requirement.

• Talk to your CPAP coordinator or home care company.

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CPAP Diary of Use Please track your child’s progress in using the CPAP. Record problems or improvements seen with CPAP use.

Date Hours used Problems or improvements

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Date Hours used Problems or improvements

CPAP Diary of Use Please track your child’s progress in using the CPAP. Record problems or improvements seen with CPAP use.

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Phone Numbers for Your Child’s CPAP

Seattle Children’s Sleep Disorders Center 206-987-5072 Option 1 – to make a clinic appointment Option 2 – for questions about a sleep study appointment Option 3 – CPAP coordinator Option 4 – for nurse questions

CPAP Coordinator at Sleep Center 206-987-8938 For initial questions about CPAP equipment and settings at home.

Durable Medical Equipment Home Care Company For questions about CPAP equipment and settings.

Name: ______________________________________________

Phone: (______) ______________________

Free Interpreter Services

• In the hospital, ask your child’s nurse.

• From outside the hospital, call the toll-free Family Interpreting Line 1-866-583-1527. Tell the interpreter the name or extension you need.

Seattle Children’s offers interpreter services for Deaf, hard of hearing or non-English speaking patients, family members and legal representatives free of charge. Seattle Children’s will make this information available in alternate formats upon request. Call the Family Resource Center at 206-987-2201. This handout has been reviewed by clinical staff at Seattle Children’s. However, your child’s needs are unique. Before you act or rely upon this information, please talk with your child’s healthcare provider. © 2019 Seattle Children’s, Seattle, Washington. All rights reserved.

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