Children and CPAP: Adjusting to Continuous Positive Airway Pressure
Why a Child Would Need a CPAP
What is obstructive sleep apnea? Obstructive sleep apnea is when there is a physical obstruction preventing a breath, or causing a shallow breath (hypopnea), to occur. For the vast majority of children, the cause is enlarged tonsils, which can be surgically removed. In rarer circumstances, children have obstructions caused by floppy airway tissue, neuromuscular weakness, or other physiologic causes, which cannot be surgically corrected.
Children with persistent obstructive sleep apnea (and sometimes central sleep apnea) that cannot be surgically corrected may be prescribed a CPAP machine. This device provides a continuous stream of air to splint open the airway while the child is sleeping, thereby preventing the apneas and hypopneas that cause obstructive sleep apnea. Some children do not tolerate CPAP and must use a bi-level system (BiPAP) or an automatically adjusting airflow system (APAP) for proper breath support and carbon dioxide clearance.
My own son has persistent obstructive sleep apnea, caused by a floppy airway (a condition known as laryngomalacia). Despite surgery, the obstructive apnea could not be helped: he now uses a CPAP machine to help him breathe at night.
The CPAP Titration: Sleep Study with CPAP
It is extremely helpful if the parents have access to a CPAP mask prior to the sleep study test. This will help lessen anxiety about the process once the child arrives at the sleep lab/hospital for the sleep study. Let the child play with the mask, and have them wear it while watching TV or playing quiet games. This is called “desensitization” and is an important step in getting a child to accept CPAP therapy.
Once the child’s sleep neurologist or pulmonologist feels that CPAP is a necessary treatment, a CPAP titration will be ordered. This is a sleep study where the CPAP pressure is adjusted to the point where almost all apneas and hypopneas disappear.
The sleep study (polysomnogram) is very similar to ones the child has had prior to the CPAP titration. The technician will monitor EEG patterns, EKG tracings, leg movement, carbon dioxide levels, oxygen saturation levels, chest wall movements, eye movements, and mouth movements. In addition to the normal polysomnogram equipment, a CPAP mask will be used throughout the study. This will be placed over the nasal cannula which measures respiratory rate and carbon dioxide output.
The technologist will slowly increase the CPAP air pressure until the hypopneas and apneas disappear – the aim is to find the least amount of pressure that will eliminate the obstructive sleep apnea. This information is sent to the sleep neurologist or the pulmonologist, who will then forward the prescription information to a Home Healthcare Company.
In my son's case, there was no mask available prior to the sleep study. This meant he had to adjust to wearing the mask and the new sensation of blowing air while going through the sleep study test. While he managed to make it through the night and sleep enough to determine the necessary air pressure, it was a difficult night for all involved. Several children's hospitals have recognized the unique needs of children adjusting to CPAP and provide behavioral therapy prior to the CPAP titration. It is wise to determine if this service is available in a local children's hospital, as it can make the testing process easier on everyone.
Bringing the CPAP Home
The home healthcare company will generally call within a week or two of the CPAP titration study. Prior to bringing the CPAP home, the child and parent will learn how to care for the CPAP machine, adjust the mask, and how to use the machine. Mask fittings will be performed at this time. Make sure that the child’s CPAP comes with a humidifier component: dry air will increase congestion and make CPAP therapy difficult. Nearly all CPAP machines come with a humidifier.
Many parents find it a shock when the insurance company refuses to pay for a CPAP machine, or will only pay for a portion of the equipment. CPAP machines are considered “durable medical equipment” and are often not fully covered under insurance policies. Nearly all home healthcare companies operate under a “rent-to-own” system with CPAP machines, so the family will be billed monthly until the machine is paid off. Depending on the insurance contribution, the payment amount will vary. Also note that home healthcare companies often inflate pricing: a mask at our local supplier was $275; the same mask online was $90. It is wise to shop around for accessories: once you know the child’s size requirements, look for CPAP supplies online.
Fit Life Full-Face CPAP Mask for Kids
CPAP Mask Options
There are three types of masks which can be used with CPAP machines:
- Nasal Mask
- Nasal Pillows
- Full-Face Mask
The vast majority of children use the nasal mask with CPAP therapy. The nasal mask covers just the nose and attaches to a hose which supplies the pressurized air. This method is not invasive and leaves the mouth free to communicate. A very important consideration with children is the possibility of vomiting: a nasal mask is extremely safe in this event, as the child’s mouth is completely free and breathing can occur through either the mouth or nose. If a child mouth-breathes a lot, a chin strap may be needed to keep the mouth closed: an open mouth lets the air pressure escape, negating the positive airway pressure from the CPAP.
Nasal pillows are soft prongs that fit into the child’s nostrils. Some children prefer this option, as it does not cover the face in any way. This is also a good option for children who have midface hypoplasia (a retracted midface) or pressure-point problems from other CPAP masks. Children who are used to wearing nasal cannulas may also prefer this method of providing positive airway pressure. The nasal pillows must be fitted to each child, since each child’s nostril size varies widely.
Full-face masks are the least preferable for use in children, as there is a risk of asphyxiation if the child vomits while wearing this type of mask. This type of mask covers the mouth and nose. Children using this type of mask should be old enough to remove it if they feel sick: very young children should have an apnea alarm monitor if using this type of mask.
Adjusting to CPAP
In the beginning, try to have the child wear the mask without attaching the hose to the CPAP machine. Once the child tolerates wearing the mask, attach the hose to the machine. If this is tolerated, explain that the air is going to be turned on.
Turn the machine on, set to a low level. The majority of CPAP machines have a “ramp” setting that allows the air pressure to start out at a low level and climb over the course of a half hour or so. Many children get upset when the air is turned on: ensure that no air is leaking into the child’s eyes (some masks are difficult to seal around small noses)!
Use a pinwheel near the mask’s vent and let the child see the air moving the pinwheel. The blowing air can also be used to blow bubbles: this is a good way to distract young children during the initial air “turn on” time.
The first night with CPAP therapy may not be very restful. A young child may bat the mask off constantly while asleep. Sleeping with a mask and hose makes changing positions difficult: most children find they can only sleep on their backs. There are several accessories which will make the CPAP more comfortable to sleep with (see sidebar).
For preschoolers who need CPAP (or BiPAP), demonstrate the process with a stuffed animal. Let the child put the mask on “Mr. Bear,” and turn the machine on. This will give the child a sense of control over the process. It is also a good idea to let the child “push the button” to start the blowing air – the machine is less scary when one is in control of it.
A reward chart is also a positive method for helping children to comply with CPAP therapy. A small reward can be obtained for each night with successful compliance (a dollar store toy or a sticker).
Our son responded well to watching videos of fighter pilots, who wear similar masks in the cockpit. We would pretend to be pilots as we set up the CPAP, and the pretend play really helped him get through the initial fear of the machine.
In the end, a firm, loving approach is the best. Wearing the CPAP must be non-negotiable, and the mask should be replaced gently each time the child removes it. This process can be exhausting (both emotionally and physically) for the parent. Be reassured, however, that eventually most children do accept CPAP therapy and will not resist the mask after a week or so of consistent use. Children who have sensory issues or other developmental concerns may have a more difficult time adjusting to the CPAP machine: in this case, the advice of developmental experts may be required. Alternatives such as a high-flow nasal cannula, “no-no” arm braces, or other behavioral desensitization may be required.
The CPAP Follow-Up Visit
After the CPAP has been used for a period of time, the child will be asked to return to the sleep neurologist or pulmonologist for a check-up. A computer card is embedded in nearly all CPAP machines, and must be taken to each doctor visit: the doctor will then review data from the machine to make sure the settings are appropriate and that the child is getting benefit from the airway pressure. The home healthcare company will also need to obtain readings from the card: many insurance companies will not assist with payments if the machine is not used for a minimum of 4 hours per night. This can be very difficult to achieve with young children starting on CPAP therapy, so some insurance companies waive the requirement for children with CPAP.
How Our Son Adjusted to CPAP
Our son was almost four years old when we started using the CPAP. The process was extremely difficult, as he could not tolerate the sensation of blowing air on his nose. In addition, the available pediatric CPAP masks were slightly too large for him, causing air leaks into his eyes when he moved. His respiratory therapist gave him two different nasal masks and a set of nasal pillows (with prongs inserting into the nostrils). He detested the nasal pillows, so we gave up on that mask style immediately.
We finally found one nasal mask which functioned well for him (few air leaks and a secure head-net), but his chronic congestion made the mask ineffective. We would often find him crying in the night, gagging and choking because of the congestion and the inability to breathe through his nose.
After several false-starts and a very rough month of no sleep, we finally came across a full face CPAP mask that fits young preschoolers. This turned out to be "the" mask for our little boy. This mask never causes air leaks into the eyes (if the air leaks, it leaks out over the top of the mask,. over his head) and he can breathe through his nose or mouth, as his level of congestion warrants.
Still, we were very worried when we went into the pediatric neurologist for his follow-up visit. He was only making it until 2:00am with the mask. To our surprise, the sleep neurologist told us that was excellent progress: wearing the CPAP for 5 hours was considered "good compliance" for a preschool-aged child.
Two months later, our son is usually sleeping with the mask until about 5:00am, which is a big improvement. We have seen an increase in energy level and muscle tone since starting the CPAP. We have also seen a decrease with his irritability. The process to get this therapy started can be frustrating and difficult, but the end result is well worth it!
Problems Encountered with CPAP
- Eye Infections: An air leak in a nasal or full-face mask may blow air against the eyes. This can cause eye infections: ensure a good mask seal for each and every use of the CPAP machine.
- Stuffy Nose: Nasal congestion is usually caused by dry air. Increase the humidity of the air (most CPAP machines have an adjustment dial for air humidity).
- Anxiety: Some children feel very claustrophobic with the CPAP mask in place. Trying a different style of mask may help (in this case, nasal pillows may work better than a nasal mask).
- Pressure Points: Skin may break down where the mask places pressure on the face. Make sure the mask is tight enough to prevent leaks, but no tighter. Rotating masks may be required (going from a nasal mask to nasal pillows) in this situation. There are several pediatric masks which provide varying pressure points: some apply pressure to the forehead, others to the bridge of the nose. Be sure the mask is the right size for the child, as a mask that is too big (or too small) may place inappropriate pressure on the child’s face.
- Dry Mouth: Some children will open their mouths to breathe when a CPAP is used. In this case, a chin strap will help keep the child’s mouth closed. For older children, a full-face mask may be an option.
- C-Pap Masks for Children: CPAP and BiPAP Mask Review
There are few CPAP masks for children on the market. Our personal experience with three masks, used for preschool-aged children: the Minime, FitLife, and Child Lite Masks.
- Laryngomalacia in Infants and Children
Laryngomalacia is a fairly common problem in infants, and can cause serious problems on occasion. Read about our journey with complicated laryngomalacia, and the causes and treatments for this disorder.
- Sleep Studies in Children: What to Expect
What to expect when your child has a sleep study - how the sleep study is performed, our personal experience with pediatric sleep apnea.