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”
“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 Super Health program is a noninvasive, holistic therapy that leverages natural, myo-functional forces to guide growth and development towards optimal clinical outcomes. More specifically, we have a variety of removable, intraoral appliances that I’ve seen do the following in my patients with Down syndrome (and in those similar cases from around the world that I’ve been collaborating with other providers on to treat their patients):
Promote proper development of both the maxilla and the mandible for better function and a more optimal profile
Open the airway to promote nasal breathing and eliminate snoring
Reinforces proper tongue placement for improved speechIs a removable soft plastic material (FDA approved, non-BPA, clinically tested in over 4 million cases) that has been shown to be comfortable and acceptably tactile to our DS patients
Facilitates oral hygiene
Replaces the need for many of the surgical procedures as well as CPAP usage
This alternative therapy has been so successful, that I have teamed with local experts from UT Southwestern to change the therapy protocol to include this intra-oral appliance therapy as a preliminary phase of treatment, and only if this fails is the family advised to proceed with the more invasive, surgical and fixed-appliance therapy.
How quickly can we see results or improvements?
While I’m a firm believer in “under promise, over deliver”, I just shoot it straight with these parents, because they typically don’t need or want me to wrap things in a pretty bow. So I will say that each kid is different, of course.
I typically expect to start seeing progress within the first 6 months of treatment, but in all honesty, we’ve had numerous patients who have had drastic improvements in their sleep and quality-of-life in a matter of weeks, or just days, with just nighttime wear of the appliances.
Those who are seeking improvements in speech start demonstrating progress after 6-12 months of perpetual use in conjunction with whatever other speech therapy the child is engaged in.
So, what now?
Well, if you have more questions specific to any of these topics, feel free to leave them in the comments below, chat with me in this chat box on your screen (yes, I actually do respond to these as often as a I can; and if I’m not available, I have team members that can connect with you here to answer your questions), or you can contact me at firstname.lastname@example.org or call my office at 214-368-0900.
I’m motivated to continue to help these children and to learn from them. Ideally, I can help provide the care your child needs to really maximize their quality of life, and worst case scenario, we can have a conversation that is educational for us both and helps us on a shared mission to support these kids.
Below, I’ve included a video of an interview with the mother of the patient shown in the video above.