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.
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.
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 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. She will still be woken by a storm or the cat wandering into her room (she won’t sleep with the door closed) but she sleeps so much better.
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) and 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!