Our son has always had unusual sleeping patterns. He moves around a lot. He sits up frequently and drops over to a random side. He snores and appears to have some trouble breathing at times. He recently turned four, and his Down Syndrome pediatrician suggested a sleep study to determine if he had some form of sleep disorder or sleep apnea.
I say “Down Syndrome pediatrician” because he has a local regular pediatrician that he sees for typical routine things, like strep throat last week, covid-19 test a week or two before that. And he has a pediatrician at the University of Virginia Developmental Pediatrics Clinic. This pediatrician is more an expert in Down Syndrome and sees our son (now only once a year) for checking progress and monitoring various health conditions – like growth, neck strength, and endocrine system. We also go to the developmental pediatrics clinic for things like feeding therapy and occupational therapy check-ups.
Our specialist recommended a Down Syndrome Sleep Study before our son turned four. In fact, all children with Down syndrome are recommended to have a sleep study by the age of four. The National Down Syndrome Society says individuals with Down Syndrome have a higher chance of having obstructive sleep apnea because of their physical condition – low muscle tone in mouth, poor coordination of air movement in throat, narrow air passage, large tongue and tonsils, and more upper airway infections.
We had checked with various hospitals and sleep study centers to find ones that did pediatric sleep studies and found two about an hour away in Charlottesville – one at UVa Hospital and one at Martha Jefferson Hospital. I opted for the Martha Jefferson one simply because our son was born there, we had very good memories of the place, and there is such ease of access off I-64. And at this point in my life simplicity and ease of access makes everything better.
So the UVa clinic had to communicate with Martha Jefferson and somewhere along the way, the ball was dropped. And we heard nothing from either place for a couple of months, so I had to give the process a bit of a kick-start to get it going again. You really have to be organized and stay on top of all of these health/education/social activities or things are going to be ignored or dismissed or forgotten. You are your child’s best advocate. No one is going to automatically do things for you. You have to really stay focused and proactive and energetic.
So we eventually got a weekend appointment for a pediatric Down Syndrome Sleep Study – which, I believe is like any other sleep study. A month before the study, we spoke with a person from the hospital who gave us some of the details and promised to mail the rest. Email was not allowed due to the sensitive medical information that was in the correspondence. And a week before the study this mail had not arrived – and evidently would never arrive. We contacted them again, and went over what we had to do to prepare for the study.
They told us that the study actually takes place in the Hilton Hotel in front of the hospital. There was a 4pm check-in where we could pick up the keys to our room and get acclimated. They encouraged us to tire our son by using the pool or walking around the outside pond. They said our technician would arrive at 7 or 7:30. The room would have two beds, and we were to bring whatever makes our boy comfortable sleeping – blankets or pillows or stuffed animals. Lights out at 11:00 pm with a 6:00 am wake up. We would have the room until 11:00 am, and we could enjoy the pool and the free breakfast buffet (wasn’t free). We could later have a follow up with a sleep specialist doctor. The sleep study procedure itself would involve wiring our son from head to foot.
When we heard the “wiring our son from head to foot” part, my wife and I thought this will never, never, never ever, never possibly ever work. He dislikes things touching his head. He doesn’t like hats. He reluctantly wears a bike helmet to ride in his pull-along cart. He has a sensitivity to touch and textures. How could that wiring part ever work? The hospital said that children usually do very well in the sleep study, and that we might be surprised.
I hate that I have reached a place where I usually go into these new experiences with a skeptical attitude. The attitude of “I don’t think this is going to work.” I wish my attitude was always, “hey, let’s give this a try – there’s a chance that it might work!” But my attitude now tends more to the negative. And I hate that it is that way. I want to be more positive and constructive and confident, but maybe it is just judging from past experience that certain new challenges will be very difficult.
Anyway, the hospital told us that we might be very surprised.
We were not surprised.
We arrived a little later than anticipated – around 7:00. Before arriving we wanted to grab a bit of dinner before starting the process. After wandering around downtown looking for a particular restaurant, finding it, and then deciding it would not be well-suited for our situation, we returned closer to our hotel and had some very delicious sushi rolls in a very family-comfortable environment.
The room was comfortable and looked almost exactly like any other hotel room. The only difference was a couple of large cameras on the wall pointing at the beds and some electronic equipment placed on the wall and between the two beds.
The technician was wonderful. She explained the process and was very positive and friendly and wonderfully optimistic. She got along well with our boy, she encouraged and calmed us, and she explained all that would be going on that evening and night. She made a special effort to get us an extra cot to give us more options for sleeping arrangements. Our son sleeps on a queen-sized mattress that sits on a box-springs that sits on the floor. The area around the bed is heavily padded and cushioned because he regularly rolls out of bed. So the technician tried to allow us to configure the arrangement that would make it as comfortable and typical as possible. The idea was to try to hook things up when our boy was ready to sleep and then to have him drift off into peaceful slumberland. Another approach to begin the down syndrome sleep study was to hook him up when he was already asleep.
The already asleep option sounded a bit more feasible, but we would try it all. When our son was slowing down – maybe 8 pm – the technician just tried putting one electrode and wire on our son’s back. He wasn’t having any of that and he pulled it off immediately. We put a heart rate monitor belt across his chest. Nope, he slid it down and tried to remove it. So we decided to wait until he had gone to sleep.
We tried to keep his routine intact as much as possible. Usually he gets a warm shower before bed, but this was not possible because his head had to be totally dry. So we bathed him with a washcloth and put on his pajamas. We read him a few stories from some of his favorite books, and he was ready to sleep. We decided that he would sleep in one of the big beds between us, but he was interested more in playing than in sleeping. So we readjusted things a bit to give him fewer opportunities for fun and more opportunities to sleep. And he did eventually go to sleep. I’m guessing it was maybe 10:30 or 11:00 pm.
The time did cause a bit of tension for me. We were told that the insurance company would only pay for the procedure if they compiled a full six hours of sleep study data. So I was somewhat worried that our son fall asleep and get going with the test. And he did fall asleep.
When he was asleep for about a half-hour, the two technicians entered the room. They had a tiny penlight that they used to navigate the room and maneuver the equipment and wires. I’m not sure how long a complete hook-up would take, but I’m guessing maybe twenty minutes? It required sort of gluing and taping electrodes to my son’s head and body, separating wires and hooking them up to a machine. My son stirred about each electrode was attached to his head. After about six electrodes were glued, my son sat up in the dark, pulled some of them off, and then fell over, wrapping the wires snugly around his neck.
The technicians quickly removed the wires and tape in the dark, wiped the glue and decided to wait until he was in a deeper sleep. I was a little worried that they might have missed one and he might still have a wire wrapped around his neck, so I kept checking to see if I felt anything. They had removed them all, but it still made me a little anxious, and I closely monitored his breathing. My son continued to sleep.
I’m guessing it must have been about 1:00 am that the technicians returned. My son was in a deep sleep. The technicians repeated the process that they had started earlier. They managed to attach a few more electrodes, but again my son sat up in the dark, quickly pulled off all of the wires from his head, and rolled over, wrapping the wires around his neck. Again, the technicians removed them quickly and cleaned up the mess. At 1:30 they apologized for not being able to conduct the study. No apology was necessary. They did all that they could do. They were professional. They were quiet and unobtrusive. They were like ghosts that floated through the dark room. We had no complaints from their procedure or conduct whatsoever. They turned off the cameras and told us to try to enjoy the rest of our stay and to try to get as much sleep as we could. My son slept fine the rest of the night.
I have to admit that I was a bit curious about whether this had ever happened before – but I guess I was too embarrassed to ask. Did other children pull out all the wires? It must have happened before, right? But the technicians never mentioned it, and all I could recall at the time was the person on the phone from the hospital telling me that I might be surprised at how well my son would do in the study. That was just setting me up for disappointment.
So where do we go from here? I’m not sure. I believe we will still have a follow-up appointment with a sleep doctor, although we didn’t collect any data. We do know now that this particular procedure will not work with our son at this point in his life, so the weekend study was productive in that sense. Are there other sleep study methods – maybe ones that do not require wires? Seems like wireless technology would be an improvement over this system. There must be wireless options, right? (A quick Google search indicates that wireless options are promising and potentially available in some hospitals across the country, although this is a relatively recent option.)
I’m also wondering if the Down Syndrome Sleep Study showed – or if we just assume – a diagnosis of sleep apnea, would he have to wear a breathing mask every night? That seems even more impossible than allowing electrodes to being attached to his head for a single night. What else can we do? What other options are available? Surgery to remove tonsils? Anything else? At this point in our 4-year-old’s life there are a lot of unknowns.
More on our journey of raising a child with Down Syndrome.