Like I talked about in a recent post, a very high percentage of people with Down syndrome have sleep apnea. In that blog post I referenced several links with research related to DS and apnea. You can go here to read the original post on sleep apnea and get your free printables with helpful tips for the actual sleep study.
I’ve talked with 3 friends in the last 2 weeks whose adult children with DS recently had sleep studies. All three have severe sleep apnea. One of the moms said she had not noticed any obvious signs of apnea. Her daughter stopped breathing 35 times an hour. Another dad had noticed that his adult son was restless and difficult to share a bed with when they were in a hotel recently. That was the only noticeable symptom. In his sleep study he stopped breathing 86 times per hour. That’s more than once per minute!
I recently had the opportunity to speak to the head of the department at the hospital where Jessie had her sleep study. He said 100% of the people with Down syndrome that they have done studies on so far have had sleep apnea. One hundred percent.
When Jessie was diagnosed with sleep apnea her index was in the mild to moderate range. 15 times per hour is the beginning of the moderate range. While she was just barely below the range of CPAP being an a necessity, the pulmonologist was certain that in time her apnea would get worse without treatment so we decided to go ahead. She already has a lower energy level and requires a lot of sleep so we wanted to do all we can to ensure she gets as good a quality of sleep as possible.
Although they are most often referred to as CPAP (continuous positive airway pressure), most often today APAP (automatic positive airway pressure) is what is prescribed. You can read more here about a comparison of the two types of machines. The amount of pressure forcing the air is automatically changing as it senses the need. BiPap has two pressure settings, one for inhalation and one for exhalation and is used for patients with higher pressure strengths or low oxygen levels. You can read here about the difference between CPAP and BiPap.
Considerations in Choosing a Mask:
- My husband was non compliant with his CPAP for years. He tried several other options first, resisting the idea of a full face mask, but in the end that is what has been much more comfortable for him. He assumed it would be the most bothersome because it covers the most area, but resorted to trying it after he couldn’t stick with other options. He sometimes has issues breathing through his nose and when using a full face mask that is a non issue.
- Because of his experience, I asked the doctor about Jessie and told him I sometimes noticed that in the morning her lips were dry from mouth breathing. If you have a sometimes mouth-breather you will want to go with a full face mask.
- It was recommended to us that if you have difficulty with fit and comfort of your mask try another. Give it a little time, but we were encouraged to find what worked during the early period while the machine was still a rental.
Getting Used to CPAP/APAP/Bipap Therapy
It took Jessie about 2 weeks to adjust to wearing her APAP machine. She was used to sleeping with her sister. She, at that point, had never slept alone, so I knew that I would need to sleep with her to get her used to sleeping with the mask on her face. She had seen her daddy sleep with his mask so she was familiar with what it looked like. She had told me before the sleep study that she didn’t want a mask to sleep with.
There are several things that take some getting used to. Initially, any one of these might wake you or cause you to have trouble falling asleep. Jessie does not have a lot of sensory issues, but some. She did really well with her APAP, but for kids who have some sensory issues, there is a lot of sensory input going on.
- Feeling/awareness of the mask on your face
- Feeling the straps etc (all over your head), how it feels on your hair
- Feeling the hose moving when you roll over
- Getting used to breathing out with air blowing in your face
Can I just go ahead and say here though, the only way to get used to it, is to actually wear it enough to get used to it.
I wanted to know what it felt like, so I would have a better idea what I was expecting Jessie to do. I put the mask on my face. I immediately REALLY didn’t like trying to exhale with air being forced back at me. And hers isn’t set at a high pressure setting, this would be even more bothersome at a higher pressure setting. I knew she needed to wear it, but feeling it for myself made me more patient with her in helping her work through it.
Our insurance (and I think many insurances work this way today) wasn’t going to pay their portion for the machine until they saw that she was consistently wearing it. The machine would be considered a rental until she met their requirements of wearing it at least 6 hours a night for “most” of 30 days in a row. This was an incentive for me to help her get off to a good start. In the long run I’m kind of glad. It forced us to be consistent.
I put Jessie in bed with me. I can’t sleep in the middle, so that meant I had to sleep with the hose to her machine laying across my face for the better part of two weeks. That wasn’t super fun. I learned later about this cord bundler that could have helped with that, but I didn’t know about it then.
I would start Jessie off with the mask on and lay with her and talk with her for a for minutes to help her relax. Initially, it took her a good few minutes to go to sleep. She would startle awake sometimes during the night. I would mostly try to talk to her to soothe her back to sleep without removing the mask. If she needed a break I would take it off for a couple of minutes and put it right back on. The first night she made it several hours with the mask on. The first 2-3 nights were when she woke the most. She got more used to having it there each night that went by.
I didn’t want Jessie to be in another room where she could remove the mask during the night without me knowing until she was very comfortable wearing it so that she would be less likely to. After about a week she was pretty comfortable with it and at about 2 weeks she was doing excellent.
The APAP machine came with a modem in it that enabled the pharmacy (where it was rented from), the insurance company, and her doctor to be able to tell how long Jessie wore the APAP, how well the mask fit (if there was leakage out of the mask) and how many times she was experiencing episodes of apnea. I was able to download an app on my phone to access that same information. It was very helpful for me to know once I wasn’t sleeping with her how long she kept the mask on. I didn’t have to rely on her to know or be truthful 🙂
The first night that I put her back in Jordan’s room, Jordan slept elsewhere and I slept with Jessie so that she was exactly in the spot she would typically sleep in. I only slept there with her one or two nights.
After that initial time, there were occasionally times that Jessie would remove her mask during the night. I would ask her why and it was usually something like that air had been leaking from the mask and blowing in her eye. Sometimes either she couldn’t find the words to explain or she just wanted to take it off.
Even when there were legitimate reasons for taking her mask off, I stressed to her how important it was for us to fix the problems so that she could keep her mask on all night every night. There was a clock she could see beside her bed. Initially, I would tell her she couldn’t take the mask off before a certain set time, and most of the time she wouldn’t. Now, she rarely ever takes it off before she’s getting up for the day.
It takes a while to get the straps adjusted to where there is less leakage. Once I found the right spot I marked the strap with permanent marker so we could easily set it to the right spot each night. It’s also helpful to wash the rubbery part of the face mask every night or every other night with a baby wipe. This helps keep the facial oils from causing the mask to slip out of place.
I was worried that Jessie would break one of the side clips if she took it off that way. We didn’t want to have to readjust ALL the straps every night so she just un-straps the one velcro strap you see marked with red marker. Everything else stays set. At bedtime, I slip the mask on and tighten just that one strap. Easy peasy.
Those Pesky Cords
One of my friends uses this Command Cord Bundler to keep the hose off her son’s body when rolling over. I bought one of these for Jessie, but she had already gotten used to her APAP and preferred it without this so we don’t use it. I’ve been meaning to try the additional hook (came with 2) to see if my husband would like it.
Compliance or Non-Compliance Becomes a Habit
Now, when I put her mask on, she is relaxed and it’s just part of the routine like brushing your teeth. We usually talk for a minute first, because once we put the mask on it’s hard to understand anything she says. Every third day I wash out the part that holds the water and refill it. The other two nights I just add distilled water as needed.
I’ve talked to a couple of parents who haven’t achieved consistency with their child wearing the CPAP every night. Honestly, just like with any other behavior, the more you let them get away with not wearing it, the more they establish non-compliance with CPAP as a habit. The CPAP is important for their health, therefore it is non-negotiable.
Try to solve any issues they have with it bothering them the best you can and then require it of them and they will comply. As Dr. Phil would say, find out what their currency is (what you have control over that they want) and use that as a motivator. Whether it be tv time, Ipad, etc. (choose one not all so they are motivated not discouraged) they only get that thing if they keep their CPAP on a certain amount of hours per night. The amount of hours you would expect at first would be less and then longer as they get more used to it and tolerate it better.
Clearly, I’m not saying throw them in their room and say, “Keep it on or else!” I am saying, find out what the issues are the best you can, work to solve them and require that they wear it. Quality sleep is so important for their health.
After Jessie had been wearing it a while I didn’t worry about it if she took off the mask during the night one night. But if she did it two nights in a row I was quick to address it so it couldn’t become a habit.
I Really Hope This Helps You!
I really hope that sharing our story and tips we learned along the way will be helpful! Whatever the topic I’m writing about, I’m always hoping that something I’ve learned along the way will be of help to someone else. I hope you have a smooth and mostly-anxiety-free transition to using APAP!
If you have any tips to add that I’ve missed, I would be happy to add them to the post so moms and dads have the best chance at getting this whole CPAP thing to work for them. If this is helpful to you will you please let me know? And share it with your friends who have a child with Down syndrome! We really need to get the word out how important it is to have a sleep study and do what we can to make the process as painless as is possible!