Tips for Helping Your Child or Adult With DS Adjust to CPAP/APAP/

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.

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Jessie was bribed to let me take this picture for the post 🙂


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.

Mask Tips:

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!

Good luck!

Josette

 

If Your Child has Down Syndrome This Is What You Need To Know About Sleep Apnea

While the incidence of sleep apnea in people with Down syndrome is much higher than the general population, I find that this information isn’t well known yet in much of  the Down syndrome community.  From NDSS (National Down Syndrome Society), “There is a 50-100% incidence of obstructive sleep apnea in individuals with Down Syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3.5 – 4 years. The overall incidence of obstructive sleep apnea increases as children grow older.” Those are pretty startling statistics to me.

Most everyone today is aware of what sleep apnea is.  Most everyone knows the health effects of having undiagnosed sleep apnea.  We all know someone who uses a CPAP machine to sleep.  What doesn’t seem to be well known yet is just how common sleep apnea is in persons with Down syndrome.

While I’ve read that some disagree, Jessie’s pulmonologist (the doctor who read her sleep study results and explained them to me) said he believes that 100% of people with Down syndrome will develop sleep apnea over the course of their life time.  Wow.

In many cases, and it was true in ours, there are no obvious signs of sleep apnea.   I didn’t have any reason to suspect Jessie had sleep apnea.  I heard a speaker at a conference say it was now recommended for all people with DS to have a sleep study by age 4, so I made the appointment.  I wasn’t in a hurry about it because I KNEW the common signs of apnea and Jessie didn’t have them.  Jessie was much older than the recommended age because this just wasn’t on my radar at all.  I try to keep up with health recommendations and in general with the info that is available about Down syndrome.  This recommendation hasn’t been well circulated yet.

I’m familiar with what sleep apnea most commonly looks like but Jessie wasn’t having any of those obvious symptoms. My husband has sleep apnea and my son did when he was 3 and his tonsils were large, and Jessie did too when her adenoids were huge.  No snoring, no obvious stopping of breathing.  None of the sitting up and odd sleep positions like she had prior to having her adenoids removed.  She did however wake up fairly often during the night.  That alone just didn’t ring any bells for me.

At a regular check up I mentioned it to our pediatrician.  He scheduled her for a sleep study.  Although many of the articles I read recommend seeing an ENT as a first step, Jessie had already had her adenoids removed and her tonsils were not enlarged, so we went straight to the sleep study.  Dr. Brown, our pediatrician, said he felt confident that our local hospital could do a good sleep study for Jessie; he assured me he felt very comfortable and confident with it.  He chose which doctor he wanted to read the results, a pulmonologist that he knew read many sleep studies specifically for children since we were not going to a Children’s Hospital.

With no obvious sleep apnea symptoms, when she had a sleep study she was diagnosed with mild to moderate sleep apnea. One or two points below the moderate.  I was a little surprised.

Jessie was very cooperative with being hooked up to all the wires and as long as I was right there with her, she didn’t mind too much sleeping there and being in a different place.  Even though it was in the hospital, the sleep studies are done in a room that seems more like a bedroom, in a regular bed not a hospital bed.  We had been talking about it for a couple of days so she was familiar with what we were going to do.  Before going to a sleep study I would recommend telling or showing pictures of someone hooked up to all the wires so your child has an idea what to expect.

We had a little time to relax before they got her all hooked up. Just being silly, playing with the phone and snuggling.

I had explained to Jessie that they would attach little sticky things to her hair, her head, and chest to see how she was breathing when she was asleep.  She was a little anxious before we got there, but when we arrived we dealt primarily with just one person and she was sweet and friendly and in a few minutes Jessie felt more relaxed.  She saw that it was just as I had explained it to her.  Knowing what to expect definitely made it easier for her.

All hooked up and ready to….sleep? It took her a little bit to get comfortable, but she did manage to sleep.

Every environment is different I’m sure, but at Flowers Hospital  where Jessie had her overnight study, they allowed me to sleep in the bed with Jessie because she was used to sleeping with her sister.  She would not have been able to go to sleep and stay asleep alone so they allowed me to sleep with her.  It is their preference that the parent sleep separately in the room if they need to be there, so that if the parent snores, etc it doesn’t interfere/confuse them as to who is snoring.

After Jessie’s sleep study when we saw her pediatrician, he asked if we wanted to be sent straight to a CPAP provider or if we wanted to consult with the pulmonologist that had read her sleep study so that it could be explained to me.  I chose to consult with the pulmonologist.  I’m so glad I did.  He was able to give me a lot more information and I highly recommend speaking directly with whichever doctor can give you this info. Her pediatrician was able to give me some basic numbers and facts, but this isn’t his specialty.  The pulmonologist gave me a good explanation of what was normal and what Jessie’s results were.

When my husband and son had sleep studies it was ordered and read by a neurologist.  Jessie’s pulmonologist and Jay’s neurologist were both listed in the category of “Sleep Medicine”.

Dr. Sexton, our Pulmonologist, explained that Jessie’s apnea wasn’t severe enough that we had to start CPAP right away.  He also told us that he was certain that over time her apnea would get worse and would later fall into the range requiring CPAP.

Jessie has always required a lot of sleep.  She feels best when she gets 10-12 hours.  She is on thyroid medicine for hypothyroid and still has a low energy level.  I knew that if there was a chance that CPAP would make her feel better we wanted to start right away.  I didn’t see any real benefit to waiting. She was going to have to eventually get used to the CPAP, so might as well do it now.

Jessie does still have a lower energy level than people without Down syndrome and I think maybe lower than some with Down syndrome.   I can tell that she does feel more rested in the mornings since using the CPAP.

The two HUGE differences though are that she falls asleep much more quickly and stays asleep all night most nights.  Before CPAP, if no one was in the bed with her she might lay there for an hour or more even if she was really tired.  Now, she relaxes right away as soon as the mask is put on her face and goes to sleep within a very few minutes.

It used to be even when sleeping with her sister, Jessie would tell me things the next morning that let me know she was waking up at night.  She doesn’t do that very often now.  She sleeps much more soundly.  Now, it is rare for her to wake up during the night unless she’s sick or it’s storming.  She sleeps so much more soundly.

I read quite a few articles about Down syndrome and sleep apnea.  Here are a couple of good links.  This article from NDSS explains apnea as it pertains specifically to Down syndrome.  This article by Sally Schott (the source of the NDSS article) goes into a little more detail and makes this recommendation, “Sleep studies in children have different definitions and techniques of analysis compared to adult sleep studies. It is better to go to a pediatric sleep lab if possible because of these differences to insure correct data analysis of sleep study results. In addition, the sleep technicians at pediatric centers are more familiar with doing sleep studies on children who may repeatedly try to remove the multiple monitors that are used in a sleep study.”

This article by the Journal of Sleep Medicine is more technical but I found it interesting.  It details a study done on adults with Down syndrome.

If you would like to receive a printable story that you can read with your child, which includes the picture of Jessie all hooked up to help them better understand what to expect, sign up below.  I have written a story for younger children (short, one page) and one for an older child/teen/adult (2 pages with photos).  I will also send you a checklist of things to consider/ask in preparation for your appointment.

When explaining to Jessie what to expect at her sleep study I would have found it easier with photos.  I hope the printables I created will help you!  I would love your feedback to know if you find these helpful.

I find myself asking every person I know lately, “have they (your child) had a sleep study?  Well, they need to, this is what I read….”

So schedule yours! And good luck!

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