Crunching Some Numbers

Whenever professionals talk about our kids, they are so fond of throwing numbers and statistics at us.  At least, that has been our experience.  Usually they're along the lines of  "about 40% of kids with Ds have heart problems" (by the way, this means that MORE than half of kids with Ds do NOT have heart issues.  It's all in the perspective...).

Of course, we tend to focus on the issues and concerns that may face our own daughter, but there were a few numbers that caught my attention.  For instance, about 15% of kids with Ds will have celiac disease.  Typical population is about 2%.  Approximately 80% (wow!) of people with Ds have sleep apnea to one degree or another. It's recommended that all kids with Ds should have a sleep study by age 4 for a baseline. Between 15-20% of people with Ds have hypothyroid issues.  That's 30-40 times the rate of the typical population.  Again- "wow".

Now the better news.  Alzheimers, contrary to what has been claimed, is much less common in the Ds population than thought.  Actual research shows that at 40 years of age, about 10% of people with Ds will be affected.  At 50 years, about 20%, and at 60, about 40%.  I found that I sighed in relief, hearing actual medical studies done by Down syndrome clinics, instead of scary claims of 100% of people with Ds get Alzheimers.  Often times, life changes and transitions can trigger behaviors that may present as similar to dementia.  We need to be aware of the bigger picture of what is happening in the lives of our loved ones with Ds, and what may have triggered new behaviors, to help diagnose problems.

Some good news is that our kids don't seem to get soft tissue cancers, have much better outcomes with chemo when diagnosed with AML, have an 80% long term success/health rate when getting either AML or ALL (types of leukemia) and tend to have few dental cavities.  Cool, huh? There are new medical and growth guidelines for people with Ds, too, as recently as 2015.  I would hazard a guess that most of our pediatricians don't utilize the newest iterations.  I know a few questions I'll be asking when we get home :)

You can find some great info (and lots of numbers!) on many health subjects if you log into www.chp.edu/dscpodcast