It wasn’t long ago that dad’s snoring was a family joke. New research is now showing that sleep problems can lead to serious issues, especially for our loved ones with Down syndrome.
Evie is only 5-years-old, and already she’s underwent 7 sleep study.
“Her first was at 11 months because they were trying to rule out pulmonary pressure issues before doing heart surgery. She had mild apnea then,” says Evie’s mom Jen Alge. This amazing preschooler, who happens to rock an extra chromosome, was found to develop severe obstructive sleep apnea (OSA) in a follow-up sleep study.
Surgery to remove her adenoids and tonsils brought down Evie’s OSA levels to a more moderate range. “A simi MRI (which I highly recommend) showed how obstructed her airway is, so we started Evie on a CPAP (Continuous Positive Airway Pressure),” describes Alge. Evie’s mom is a disability advocate friend of mine, so I’ve heard her talk about their countless sleepless nights. “She does wear it on average 7 hours a night, but that’s only because I’m in her room 5-8 times a night at least putting the mask back on.”
Research out of the University of Arizona links Obstructive Sleep Apnea to cognitive problems.
“Addressing sleep disruptions may be an overlooked way to improve cognitive outcomes in the Down syndrome population,” says Dr. Jamie Edgin, lead researcher and professor of Psychology and Cognitive Science. The study found that individuals with Down syndrome with OSA had cognitive, memory, language, and behavioral issues.
Edgin’s study of school aged kids found those with untreated OSA had a poor ability to learn new rules, and a 9-point difference in verbal IQ scores compared to their peers with Down syndrome without OSA. “A more recent study of preschoolers with Down syndrome found that those with OSA had fewer words and may limit how well they learn to communicate,” explains Edgin.
It’s estimated that 50-100% of individuals with Down syndrome have Obstructive Sleep Apnea (OSA), and most parents can’t predict whether or not their child has it.
This is true in our case. I had no suspicion that my son, Troy, had OSA, but took him in for a sleep study at 2-years-old anyway after reading Edgin’s research.
The American Academy of Pediatrics recently lowered their recommended age for completing a sleep study for children with Down syndrome from 8-years-old to 4-years-old. “The earlier we detect the sleep problems the better. There’s a push in the medical community to decide how early and I argue it should be earlier than 4-years-old,” explains Edgin. “A study out of Indiana found that babies as young as 6-months-old showed divergent sleep patterns.”
I’m glad I didn’t wait to take Troy in for a sleep study. At 2-years-old he had moderate sleep apnea. Troy got his adenoids and tonsils removed, which was enough to resolve his sleep apnea. At almost 5-years-old he’s speech has taken off despite his Apraxia diagnosis, although I’ll never know if that’s because we were so proactive in treating his OSA.
Parents should continue monitoring sleep issues even into adulthood.
“One age group that’s not being studied is adults,” says Edgin. “OSA and other sleep issues has been shown to lead Alzheimers and cognitive declined in typical adults. The same is likely true for adults with Down syndrome. Although they may suffer these declines earlier than their typical peers.”
Edgin recommends that individuals with Down syndrome repeat sleep studies periodically throughout their lifespan. “As people age and put on more weight it can reoccur. Parents need to stay vigilante as they age,” explains Edgin.
Talk to your child’s doctor and decide on a course of treatment that’s best. Not every treatment is meant for every child.
For our family, surgical removal of aenoids and tonsils was enough to resolve Troy’s OSA for now. Evie’s mom, Jen, says she hasn’t seen any difference in her daughter’s language and behavioral outcomes after using the CPAP, but she still thinks the treatment has been worth it.
“Evie’s always been a smarty pants and she talks all day long so I can’t credit the CPAP for any changes there. I will say she is getting more air and isn’t gasping for breath or snoring with the CPAP on so that’s a relief. The behavior changes might be more long term given her age,” explains Jen Alge.
Remember sleep is likely just one piece of the puzzle when it comes to cognitive, language and behavioral issues.
“Sleep issues alone do not fully explain the extent of language disruption in individuals with Down syndrome. We found that the good sleep group with DS was also impaired in these areas in relation to their typical peers,” explains Edgin.
“It’s important to understand the link between sleep and learning problems, but it’s not the only thing people need to keep in mind. In the end, language interventions may be more beneficial if done in conjunction with sleep interventions,” argues Edgin.
Interested in learning more about 5-year-old Evie’s OSA treatment? Read here.