If you follow my Instagram account @mrs_t_park, you have seen several posts about our journey with CPAP. You most likely know the short version of why she’s on it, but I thought it would be good to share some more of the details here in hopes that if you find yourself in a similar situation, you know you are not alone!! It’s not an easy road and I am still so new at all of this, but here goes!
Sleep apnea can be very common in people with Down syndrome. Low muscle tone and floppy airways can play into this as well as enlarged tonsils and/or adenoids. In the back of mind, I knew it was recommended for kids with Down syndrome to have a sleep study performed at some point in their childhood because it is so common. I spoke with her pediatrician about it around her one year checkup and we both agreed it was a good idea to move forward with a sleep study, the first step in diagnosing sleep apnea.
During the fires when we were evacuated from our home, David, Bernadette, and I were all sleeping in the same room for several nights. It was during that timeframe I noticed how often Bernadette was gasping for air throughout the night. Several times, it woke me up, just simply hearing her gasp and fall right back asleep. Other times she would wake up completely and fuss until she soothed herself back to sleep. She has always been a noisy breather in general, although I haven’t heard much snoring from her. The gasping for air was a concern with her pediatrician at her one year appointment and cause for the decision to move forward with a sleep study.
The first sleep study was scheduled for a couple of months after her first birthday. It is incredibly difficult to get an appointment for a handful of reasons which is why it was so far out from when we initially discussed the idea with her pediatrician.
David took Bernadette to the sleep study, a huge relief to me. I couldn’t handle the thought of not having a night of sleep when I was already falling over from sleep deprivation on a regular basis, enter, I have three kids and some nights there is not a whole lotta sleep happening. They told him to expect the results sometime within a couple of weeks.
Later that evening, I got a phone call from the doctor who read her sleep study. I thought it was odd they called so quickly but soon realized it was because he had to deliver not the greatest news. “Bernadette has severe sleep apnea. Around 20ish episodes an hour.” Anything above 10 is considered severe.
I have to admit, I was a little shocked. I knew the symptoms were there along with the fact she seemed as if she could go right back to sleep most mornings after waking up for the day. I still didn’t think it was going to be that severe.
He suggested we meet with a head and neck surgeon to figure out what the next step would be. Typically, it’s the tonsils and/or adenoids that cause the issue with the solution being removal. That has been shown to help a fair amount of kiddos with sleep apnea.
We met the surgeon a couple of weeks later who took a good look at Bernadette and decided he did not think it was her tonsils or adenoids causing the issue. He thought it would be best for us to try her on CPAP (continuous positive airway pressure) at night to see if that solved the issue.
David took her back to the sleep clinic for another sleep study, this time with the CPAP mask and sure enough that seemed to keep the episodes minimal. Unfortunately for us that meant the beginning of our struggle with the CPAP mask. How in the world you get a such a small human to wear a mask all night long is beside me, especially when a majority of adults won’t even wear their masks.
It’s been an ongoing battle for the past few months to try to get Bernadette to wear her mask at night. We met with a pulmonologist in between who tried giving us some helpful tips on being successful with the mask but none of which have helped us make any sort of progress with her. The handouts she gave us were geared towards older typically developing children, not for an 18 month old.
Here is where we find ourselves today. CPAP does not seem to be the solution for us at this time. It’s important to start looking into the cause as to what exactly is causing the obstruction during her sleep as the long term affects of sleep apnea can include heart and lung issues. I’ll be getting in touch with her surgeon soon to discuss the next steps to come up with a good plan.
For now, I’m still attempting CPAP every night with her in hopes that maybe something will miraculously switch over for her tolerance level of the mask but if not, I have full confidence that moving forward with finding the underlying cause and taking care of it will help her thrive and progress forward in every day life even more so. She’s one tough little warrior girl, that’s for sure!