Helping a Child with Down Syndrome Thrive [Video]

Updated: Nov 20, 2019

By Dr. Jill Ombrello

The information every parent needs to know related to airway, breathing, sleep, speech, and growth and development


First off, if anyone has a suggestion for a better title, please let me know.  I’m an expert in growth and development and oral health, not a blogger ;)  But I thought this was at least a good way to kick off this long overdue conversation.If you want to know more about my “why”, continue reading. But if you want to get straight to the ways we can help your child with Down syndrome thrive, jump right to it here.


For a variety of reasons over the past 10 years of my career, I have been treating more and more children with early interventional therapy for airway development, sleep health, growth and development, and orthodontics (I discuss the history of my career in more detail in my bio or I've included more recent updates in my 2018 year-end letter to my patient families). It has been both an honor and a challenge to expand my research and experience in this area. It’s been an honor insomuch as I’ve had the privilege to collaborate with families and their other healthcare providers, teachers, and therapists to create therapeutic plans customized for each child to reach their full potential. The challenge, however, is as follows: with this niche expertise I’ve developed, I’ve been referred patient cases from all over the world that I never expected to be treating.


One such type of patient is children with Down syndrome. In dental school, we were taught that these were “special cases” that almost always required the specialty level experience of an oral surgeon or pediatric dentist who could sedate these patients to do any treatment, and that there would be certain developmental, functional, speech, and airway conditions that went along with this syndrome that could not be avoided nor addressed. And what I came to learn with experience and clinical testing, is that’s just not the case at all.


And on top of that, after doing some further research, I came to discover that current “accepted standards of care” for these children related to their airway, sleep, oral health, and growth and development are wildly invasive and very taxing on the children.  This is certainly not a criticism of those accepted standards, as I know those have been developed with expert opinions and research. But those approaches have come from the medical field and without leveraging the expertise of the advanced technologies we have in the dental field. 


And I’m happy to report that a collaboration with UT Southwestern has allowed us to alter this protocol and offer a noninvasive, early interventional therapy that has been proven to yield profoundly positive clinical outcomes. 

But what really motivates me to continue to collaborate with these families to create a solution that helps these children thrive is the families themselves. There is a spirit, or core values or attitude or whatever you want to call it, that comes with these families that is almost tangible.


The children, of course, are the epitome of joy and a constant reminder of what it means to give and receive unconditional love, and my team and I adore them and all that we learn from them. But with these children always comes a parent or set of parents who have the gusto of a bull, a drive to do all that they can to help their kids in any way that they can.


And as a parent myself, that just really resonates with me and inspires me to meet them at their level of dedication to support these children in becoming the best version of themselves.


So let’s get into it. The best way I know how to discuss this is to replicate the conversations


I’ve had with countless parents of children with Down syndrome.


What are the common issues or conditions that a child with Down syndrome is likely to experience that can be treated?  And how does this noninvasive, early interventional therapy work?


Teeth Grinding ("Bruxism" or "Clenching")

We have a number of parents who come in with chief complaints that sound something like:


“I’m worried that my child is going to break or crack his [or her] teeth and be in pain because of the constant grinding”


OR


“I’ve heard that teeth grinding is common, but my goodness, it’s so loud, it keeps everyone in the house awake. Is there anything we can do?”


First of all, these questions are common and not previously well discussed; so rest assured that you are not alone in your concerns. Here’s my best attempt to explain what’s going on, but please leave comments below if you have questions, and I’d be happy to update with additional information to help explain.


While teeth grinding may be common, it certainly is not “normal” or desired. In fact, teeth grinding at night has been identified as a cardinal signal of sleep-disordered breathing.


Essentially, because the airway is compromised (due to the variety of reasons we discussed above), the body is in a survival mode of moving the jaw around during sleep to try to open up the airway to promote better breathing.  The grinding teeth are just collateral damage to this survival mode that the body is in. In multiple follow up research programs (as well as just anecdotal evidence I have with my patients), it’s been shown that the grinding is completely resolved when the airway is opened up to ideal levels, and the child is able to breath properly throughout the night, which has even more health benefits than just the elimination of teeth grinding. Keep reading!


Mouth Breathing & Snoring

These are two other, very common chief concerns of parents of children with Down syndrome; they are amongst the most common symptoms of a condition called “sleep-disordered breathing”.


Oftentimes, parents are aware that mouth breathing and snoring are undesired conditions but maybe aren’t aware of the long-term effects of them, OR they know the effects, but they weigh the risks of current treatment options for sleep-disordered breathing and decide that snoring and mouth breathing are more manageable than this alternative.

So, what are current treatment options for sleep-disordered breathing in children with Down syndrome?

Well, because the cause of these symptoms is a compromised airway, the objective of the course of treatment is to stabilize an open airway. This treatment can include but is not limited to the following:

  • Going under the care of a team of surgeons

  • Adenoid and tonsil removal

  • Ear tube placement

  • Tongue reduction (or shaving of the posterior portion of the tongue to reduce the size)

  • Cementation of a rapid palatal expander (“RPE”, a metal dental device used to expand the upper jaw) in the roof of the patients

  • Multiple rounds of general anesthesia and/or IV sedation

  • Potentially multiple stays in the ICU

  • Lifetime CPAP device usage


Let me make it clear that I think this is a great course of treatment for children who have exhausted other options. However, just like any medical treatment, there are risks and downsides.  Some of the risks and side effects include:


  • Typical risks associated with surgery and anesthesia

  • Pain with each procedure & with ongoing treatment with the RPE

  • Increased difficulty with speech due to RPE

  • Delayed development of maxilla due to CPAP device (this can contribute to a flatter profile or even a “sunken in” profile because of the device restricts growth of the maxilla)

  • Poor compliance with long-term usage of CPAP

  • Texture sensitivity and potential choking hazard of the RPE; many children do not like the metal permanently cemented to the roof of their mouth, and they can be at risk for aspirating or choking if the child, for lack of a better way to explain it, “messes with it” with their tongue or fingers

  • Oral hygiene concerns/ increased risk for cavities due to fixed dental appliances

And what is the alternative? 

Our