Sleep studies are a common screening done for kids with Down syndrome, especially if they snore. They can often have tiny mouths (and not so tiny tonsils). Spencer had his first Sleep Study when he was 3yo.
In May 2018, Spencer was snoring badly, so he went for a new Sleep Study. Through that he was diagnosed with Severe Obstructive Sleep Apnea. It was so bad that the Pulmonologist called me on Mother's Day! He was very concerned that I follow up ASAP. Our ENT (Ear Nose & Throat doctor) said that a Tonsillectomy (the usual treatment for this) was contraindicated because Spencer has a Bifid Uvula. That means his uvula was splitting into two. Think of a Y hanging upside down in the back of the throat. So... we went with CPAP (Continuous Positive Airway Pressure Therapy). That involved going for another sleep study.
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| First comes the Sleep Study. Then a month later... |
another sleep study to determine the appropriate CPAP pressure. |
Getting a 6yo to start using a CPAP is tricky. In fact, when we went back in for that sleep study, the Sleep Tech questioned me. "Are you sure you want to go with CPAP? He'll be on it for the rest of his life." Yes, I am sure! It's what our doctor has recommended for our special case and we're going to do whatever it takes! They didn't think he'd adjust to using it at all. But we do what we have to do, don't we? Yes, it was a bit rough getting started. But I put together this little CPAP for his treasured stuffy. And then his siblings and I stood around his bed at bedtime doing an Astronaut Countdown to blastoff. We still had some battles, but he adjusted and 3½ years later, he still loves to see his 100 score on my CPAP app!
But his diet has been narrowing. I asked his Occupational Therapist about Feeding Therapy. First she wanted a list of his typical diet. Then she requested a Swallow Study. My knee-jerk reaction was that she was just avoiding the actual therapy. I knew we needed help! She suggested I ask his Speech Therapist for her input as well. His Speech Therapist had some questions... questions that made it obvious that he absolutely needed a Swallow Study. We're in a new town and Spencer was released from care from his previous ENT because his hearing was consistently excellent. So I looked for local recommendations and chose a new ENT. It took a couple of months to get in to see him.
Every single medical staff person that has ever looked into Spencer's mouth has been shocked. They usually audibly gasp and certainly comment. But I've felt confident in our treatment... until recently. Since that conversation with the Speech Therapist, I've been increasingly confident that the tonsils will go and that Spencer will likely come off of the CPAP. We finally got to see our new ENT! He did not gasp, but he did look sad. Sad because Spencer's quality of life could be so much better if he weren't living with these absolute boulders in his throat!
Worse yet, he didn't even see the Bifid Uvula! He said it may be there and be very minor, but nothing to even consider. I'm heart broken that this has gone on for so long. And I wonder what the future holds. Will Spencer stop verbally stimming when he eats when his throat is more open? His voice will be less "hypo-nasal" (per ENT and Speech Therapist). Will he enjoy eating bread?? (We have to order his burgers with no bun.) Those two months waiting to see the new ENT seemed like a long time and now we have two more months to wait for surgery. The doctor will remove his tonsils. He will also reduce his Adenoids - if needed. I was worried about that, but I'm confident in this doctor. Hopefully my faith is not, once more, misplaced. And then he also plans to check (and likely reduce) his Turbinates. I had never even heard of those!
Turbinates are small structures inside the nose that cleanse and humidify air that passes through the nostrils into the lungs. Spencer's Nasal Cavity is so tiny, it just doesn't have room for them! This doctor believes reducing them will likely reduce Spencer's ADHD symptoms, too. :-O He also expressed concern that all of his breathing issues could be causing the center of his face to not grow. There have been studies on this. And the CPAP just makes it worse!
I have to believe that I was making the best decisions for him that I possibly could. But damn if that Mom GuiltTM isn't kicking in...
