Noah, Sleep Apnea, and the CPAP Challenge Ahead
Sleep. It seems like such a simple thing, but for many individuals with Down Syndrome, getting a good night's sleep is anything but simple.
In earlier blogs, I discussed the events that led to Noah being diagnosed with a Growth Hormone Deficiency. While it is uncommon in individuals with Down Syndrome, it does happen.
As Noah entered middle school, we noticed a significant change in his behavior. Part of it was likely the adjustment to a new school, being surrounded by much bigger kids, and learning an entirely new routine. At first, we assumed it was simply a difficult transition. As time went on, however, the behavior became increasingly challenging.
I worked closely with all of Noah's doctors to try to identify the cause.
A new environment? Sure.
Puberty? Absolutely.
Growth hormone treatment? Probably not. Growth hormone itself does not necessarily impact behavior. What I did not know at the time, however, was that growth hormone can contribute to sleep apnea. Even if I had known, I still would have chosen treatment because the benefits Noah has received from growth hormone therapy have far outweighed the risks.
Fast forward to February 2026. Noah was evaluated by the Sleep Clinic at Kennedy Krieger Institute (KKI). That appointment was the first time I learned about the possible connection between growth hormone treatment and sleep apnea.
For years, I had been telling Noah's doctors that his sleep was poor. He tossed and turned throughout the night, woke up frequently, and rarely seemed rested in the morning.
We tried melatonin. Nothing.
We tried magnesium. Nothing.
We tried clonidine. It may have helped him fall asleep, but it certainly did not help him stay asleep.
So here we were with a teenager going through puberty, limited communication skills, chronic sleep problems, and increasing behavioral challenges. Something had to be going on.
A few weeks ago, Noah completed his third sleep study. Sure enough, the results showed sleep apnea.
Honestly, I felt a little relieved.
Not because I was excited about another diagnosis, but because we finally had an answer. If we can improve Noah's sleep, maybe we can improve his behavior as well. Most of us are not at our best after a poor night's sleep. Now imagine functioning that way every single day.
Of course, when I shared the news with my husband, my parents, Noah's dad, and pretty much everyone else, they all asked the same question:
"How are you going to get Noah to wear a CPAP machine?"
My response?
"I have absolutely no idea."
Maybe we can convince him he is Darth Vader.
Maybe we can put it on after he falls asleep.
Maybe we can perform some sort of parenting magic that I have not discovered yet.
Fortunately, KKI offers training and support for children with sensory challenges who need CPAP therapy. We are hopeful that with patience, practice, and a little creativity, Noah will eventually adjust.
If you have been through this process with your child or loved one, I would love to hear from you. Any tips, tricks, or words of wisdom would be greatly appreciated.
Want to Learn More?
If your child has Down Syndrome, behavioral changes, difficulty sleeping, loud snoring, restless sleep, or excessive daytime tiredness, it may be worth discussing sleep apnea with your pediatrician or specialist. Sleep problems are common in individuals with Down Syndrome and can impact learning, mood, behavior, and overall quality of life.
For additional information, you may find these resources helpful:
Kennedy Krieger Institute Sleep Disorders Clinic – Provides evaluation, sleep studies, behavioral support, and CPAP management for children and young adults, including those with developmental disabilities.
National Down Syndrome Society (NDSS) – Offers information about sleep apnea and other health concerns commonly associated with Down Syndrome.
As we begin this next chapter with Noah and his CPAP adventure, I will be sure to keep everyone updated. If your family has been through this journey, please feel free to share your experiences and suggestions in an email or in the comments section on Facebook.
Do not forget to follow us on Facebook and visit the Life with Noah blog for more stories, challenges, victories, and adventures. As always, thank you for following along on this journey.
