Did You Know?

I've become a member of a pretty exclusive message board for people with multiples (twins, triplets etc) where 1 or more have Down syndrome. Not a big group but informative as all heck! I mean, "WOW!" It's one new issue after another that I didn't know I should be aware of. The latest that's gotten my undivided attention is this:

Did you know that many children with Down Syndrome suffer from some degree of sleep apnea? All the tossing and turning and sitting up and folding in half and moaning and groaning and snoring and wheezing and stop breathing and gasping is NOT normal! "Duh" you say? No kidding! How thick-headed am I? I just thought that since it had improved significantly from their infancy and Brian and Michael mostly stayed asleep through the night that they were just restless sleepers. Come to find out through my new friends at yahoo that all these behaviors are pretty typical... Typical, that is, of children with Down syndrome who suffer from Obstructive Sleep Apnea (OSA - an acronym I had to google before I knew what we were talking about). Even more interesting, it's been hypothesized that seizures might be related to the depleted oxygen supply to the brain. Perhaps that explains Brian's unexplained seizure-like episode that landed him in the ER back in September of last year.

Obstructive Sleep Apnea causes a decrease of oxygen supplied to the sufferer's brain and body. Oxygen saturation levels can and should be measured if a child suffers from restlessness during sleep. Further, there are different degrees and types of OSA and there are different measures for diagnosing it in children than there are for adults. Though I'd seen a Pediatric ENT who had sized up Brian's and Michael's tonsils and adenoids by eye, he'd quoted adult-level apnea incidences and durations, told us we didn't meet the criteria for the surgery and to wait another year and see if they (the tonsils) grow.... Exactly the same thing he'd told us last year. So, I went home thinking, "We're OK. I addressed it. I'll go back in 12 months and make sure we're still OK." Then, my message board friends told me, en masse, that almost without exception, their children had had their tonsils and partial adenoids removed not only to waylay repetitive illnesses like strep, tonsillitis, colds, sinus infections etc, but also to help clear the obstructed airway, improve sleep and blood oxygenation. It was as though I'd been hit by a lightning bolt!

I know that children with Down syndrome tend to have smaller oral cavities. I know better than to think their tongues are bigger and so protrude from their mouths. Rather, their mouths are smaller... which includes their throat opening. With typical-sized tongue, tonsils and adenoids the airway at the back of the throat is a bit too crowded for normal breathing. Coupled with the tendency toward low muscle tone (in this case, specifically the muscles in their mouths), the tongue in a relaxed sleep-state further blocks what little breathing space they might have. Hence, the increased incidence in Obstructive Sleep Apnea AND the increased tendency toward removal of the tonsils and adenoids in children with Down syndrome. (NOTE: apparently, only part of the adenoids should be removed in a child with DS because full removal of the adenoids complicates post-surgery recovery due to their slightly different oral anatomy.) WHO KNEW?

When in doubt, seek an expert's advice. I will no longer accept a brush off explanation of what I consider abnormal behavior. Their tossing and turning and night-time noise-making is not as simple as restlessness. I'll be making an appointment for Brian and Michael to see Dr. Robert Ward at New York's Presbyterian/Weill Cornell Medical Center, a highly recommended Otorhinolaryngologist (ENT) who specializes in treating children with Down syndrome for sleep disturbances. Armed with information from my panel of experts who have lived through this with their own children with DS, I'm sure to ask more pointed questions and leave with more appropriate answers specifically-applicable-to-my-boys this time!

Many years ago, a friend of mine lost her mother to breast cancer. Before passing, her Mom had written a book about her 13+ years fighting the disease. The moral of her story was that it is the patient's job (or the patient's mother's job, in my case) to aggressively pursue their own personal course of treatment. The doctors, hospitals and pharmaceutical companies have their standard prescriptions and sometimes personal agendas... Not all bad but not necessarily with the specifics of the individual patient in mind. This holds true for all of us and for all illnesses, ailments, afflictions, diseases, genetic conditions etc. We are the keepers of our -- and our children's -- good health. Pursue it with vigor! Our lives and their lives depend on it.