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.
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.