When I brought home my newborn son, I thought he was as perfect and as healthy as he appeared. Unfortunately, this wasn’t exactly true. When my son was only a few months old, I noticed he snored. Loudly, and consistently. At first, I figured he was congested. But as time went on, his snoring worsened. I brought up my concerns with his pediatrician at our 2-year check-up. I was assured his snoring wasn’t a problem and that he would “grow out of it”.
However, he never grew out of it and now we know he never will.
I didn’t know anything about pediatric sleep apnea then, or that a child snoring could be a cause for concern.
Over the next two years, I kept watching my son sleep, while growing increasingly unsettled by the severity of his snoring, night sweats, restlessness, and pauses in his breathing. During the day, he struggled to stay awake and was often what I termed “a grumpy guy”. His growth slowed down significantly (during a time when he should’ve been growing faster.)
Finally, when my son was 4.5 years old, I found him snoring WHILE awake!
He was relaxing, watching TV while sitting on the couch. I took a video and decided at that moment, enough was enough. The next day, I drove to our pediatrician’s office. I showed up without an appointment and refused to leave until the doctor watched the video. Once the doctor saw the video, I was told we would finally be referred to an ENT (Ear, Nose, and Throat) doctor.
I spent so much time mentally questioning the pediatrician’s assertion that my son’s irregular breathing and snoring “wasn’t a problem”, and second-guessing my own concerns. I was ashamed that I didn’t just know what to do to help my son, that I needed to push the pediatrician for testing or referrals.
Now that my son is 12, I have become somewhat of a mom expert on pediatric sleep apnea. It is a condition that is often missed, dismissed, and misunderstood.
Since his diagnosis with pediatric sleep apnea at age 4, my son has been through:
- 6 sleep studies
- 3 surgeries
- 1 orthodontic procedure
- Numerous scans
- 2 years (and counting) of CPAP therapy
- Dozens of appointments with various specialists, all with differing opinions of what we should do.
Until recently we were still being told he would probably outgrow his pediatric sleep apnea, and I was made to feel stupid for demanding a new sleep study after I noticed the return of snoring and other symptoms. Unsurprisingly, I was right to be concerned.
If you notice any symptoms of pediatric sleep apnea in your child, here are 10 tips for getting the proper diagnosis and care:
- Take videos
This was the pivotal information needed to get my son’s snoring taken seriously. Now, with patient portals, it is even easier to send your pediatrician a video. Describe exactly what you are seeing in the video that is of concern. - Get a baseline sleep study
When I took my son for the initial ENT consultation, the doctor recommended a T&A (tonsils and adenoid removal) surgery. He assured me that it resolves sleep apnea in 95% of kids. Much to his annoyance, I insisted on a sleep study prior to surgery to have a baseline study to compare future studies to after treatments. That first sleep study was absolutely crucial to my ability to advocate for my son in the years that followed. - While the T&A surgery IS the gold standard treatment for pediatric obstructive sleep apnea, it may not cure your child. Additionally, adenoids can grow back. (Surprise!)
- Don’t forget the upper airway
Ensure your child’s upper airway (nasal cavities and mouth) is being looked at by their medical team. So much can be missed in the upper airway that affects breathing. My son benefited from nasal turbinate reduction surgery. - Treat existing lip and tongue ties
While many moms learn about lip or tongue ties courtesy of breastfeeding (ouch!), these conditions may go unnoticed in bottle-fed babies like my son. One specialist noted my son’s lip and tongue ties and recommended a minor, in-office procedure to correct them. - Consider orthodontics
Consult with an orthodontist who understands pediatric sleep apnea and how the airway is impacted by orthodontic care. My son’s orthodontic team is amazing and the use of a palate expander did improve my son’s sleep apnea. (Improve, not cure.) - Repeat the sleep study
After completion of any surgery or treatment, make sure your child has a repeat sleep study. This serves to show what improvements were gained by the treatment and can guide the next steps. - Look into alternative therapies
On our journey, we consulted an airway/orthodontics specialist. They recommended myofunctional therapy, an exercise program for the muscles of the neck and face. We did not pursue this option due to my son’s young age and because it was cost-prohibitive for us. However, I do see how it could likely improve someone’s symptoms. A different doctor suggested trying a wedge/incline pillow. During one of my son’s sleep studies, this doctor put the head of his bed up. The data showed a moderate decrease in my son’s apnea events during this time. - Travel
It’s easier said than done but if you live in a smaller state or a more rural area, it’s possible you’ll have difficulty finding knowledgeable providers. While I wish this wasn’t the case, it may help to go where the best doctors are near you. (For us, this meant Boston, about 3.5 hours away.) - Don’t be afraid of CPAP, the machine sufferers of sleep apnea can use to keep their airway open
Early on, I was horrified at the thought of my then 5-year-old requiring a CPAP machine at such a young age and/or for the rest of his life. He was on CPAP therapy for about 18 months at that age and I was surprised at how much relief I felt. Sure, the adjustment was difficult, and some nights were more of a battle than others, but the overall improvement in my son’s quality of life was amazing.
When he needed to resume CPAP therapy at 12 years old, it was just like riding a bike. Having the experience when he was younger made this process less stressful. Having already experienced the benefits meant compliance hasn’t been an issue for us this time around either.
The impacts of pediatric sleep apnea are pervasive and can lead to long-term health issues if left untreated. Pediatric sleep apnea doesn’t discriminate. My son has never had a single risk factor associated with this dangerous condition, but he had one of the worst cases ever diagnosed at our hospital. YOU know your child best, YOU see their symptoms- follow your gut instinct.
I hope this information helps you advocate for your child should you ever be concerned about pediatric sleep apnea.
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