Sophia had just had a sleep study last November I believe, and her results came back as having mild to moderate sleep apnea. So we were referred to a pulmonary doctor and to our ENT. We were given the options of doing nothing at that time, and having another study done in a year. Or we could try some medication, Flonase and Singular I think it was. Or we could experiment with a CPAP, continuous positive airway pressure. I looked into both options, 2 and 3, and decided that we would just wait it out and see where we were in another year. No one really seemed to think that things were that severe right then anyway. Then a week and a half ago we had a follow up appointment with another pulmonary doctor, who was the actual doctor who initially read Sophia's sleep study results from last year. She seemed to think that the CPAP was the way to go, seeing as how Sophia's sleep apnea would probably not improve, but most likely get worse.
According to the National Down Syndrome Society, there is a 50-100% incidence of obstructive sleep apnea in individuals with Down syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3 1/2-4 years. The overall incidence of obstructive sleep apnea increases as children grow older. Individuals with Down syndrome have a higher incidence of obstructive sleep apnea (OSA) mostly because of their anatomy. Some of those factors include: low muscle tone in the mouth and upper airway, poor coordination of airway movement, narrowed air passages in the midface and throat, a relatively large tongue, and enlargement of the adenoid and tonsil tissue. Enlargement of the tonsils and adenoids is one of the most common causes of OSA in children, which is why Sophia had hers removed 1 1/2 years ago.
Like our doctor told us, it's important to get Sophia's sleep apnea under control, sooner rather than later, because it can affect things like cognitive abilities, behavior, growth rate and even pulmonary hypertension (abnormally high blood pressure in the arteries of the lungs.) So she suggested another sleep study, which continues to be the best standard test from which to evaluate sleep disordered breathing and sleep apnea, but with the CPAP this time. The CPAP consists of a mask that fits over the individuals nose and forces air into the airway to open it up and allow better airflow while sleeping. Needless to say, I didn't have high hopes for this CPAP gig working out.
First off, I've noticed more and more lately that Sophia is so much more aware of her surroundings and she recognizes familiar places and knows when "bad things" are about to go down. She gets herself all worked up and I can see the anxiety building up as I'm trying to convince her to get out of the car, and that it's really not going to be THAT bad. Last night, she knew. She knew when we were driving there. She knew when we pulled into the parking lot. She knew when we got on the elevator. She knew when the woman called us back to our room. And boy did she know when they came in to get that party started.
She cried. She was scared and nervous and anxious. She was definitely expecting the worse case scenario to happen. But she never once tried to pull anything off her head or face. She didn't squirm or try to get away from me. She just cried and pouted a little and shook her little hand and head at the women telling them "no" when they were about to do something she didn't want them to do. But most of all, she was brave. Just like she always is when we have to do things like this. I can see the fear written all over her face, because Lord knows this baby girl has had her fair share of medical
stuff to go through. But she always puts on a brave, big girl face over all that fear, and gets the job done.
Sophia, with all her sleeping gear on, besides the CPAP
CPAP in place, getting ready to count her sheep
Sleeping. Under all that stuff, she is actually sleeping.
Now we wait, 7-10 business day, for our results. I'm not sure where we will go from here, since the CPAP wasn't in use for 95% of the sleep study. But we do go back at the end of August to see our pulmonary doctor and discuss the sleep study in person and hopefully come up with a plan that will work, for everyone involved.