Braces and Expanders: A Parent’s Journey for Her Son With Down Syndrome

By Marilyn Wallace

Most, if not all, children with Down syndrome are born with a high narrow palate in their mouths.  This is due to inadequate development of the facial bones. I know it is more technical than that, but admittedly have only a basic understanding of this.  When my son was young, I knew it was important to seek orthodontic treatment to get his palate expanded to aid in his speech.

Now I know so much more and as they say, “Hindsight is 20/20”.

David is currently 16 years old.  We started seeing an orthodontist when he was 6, just to be followed.  At 9, an expander was put in. He maxed it out, so then he went to top braces to get to full expansion.  Once all his adult teeth were in, top and bottom braces were put on.   He had them for two years.  December will mark 2 years since his braces have been off.  Now he has 2 permanent retainers on the back of the top and bottom 4 teeth, with a removable one to wear at night.  These will be used for the foreseeable future.

We thought we did everything correctly until we saw a new holistic dentist and I learned that David is starting to lose some expansion.  The cause – tongue placement.  David is a mouth breather.  Mouth breathers’ tongues rest on the bottom of their jaws. If you are on your back with your mouth open, this can result in the tongue going backwards causing an obstruction and possibly contributing to sleep apnea, a chronic issue for our kids.  Teeth grinding, another issue in people with Down syndrome, may be caused by kids moving their jaw around trying to breathe better.   While orthodontics helped, it didn’t address the underlying issue of mouth breathing and didn’t get him the facial development which is what we really need.

It is healthiest to breathe through your nose.  The mechanics in the nose help filter and heat/cool the air for us and prevent germs from progressing.  When you nose breathe and your mouth is closed, tongue placement is on the roof of the mouth.  The force of the tongue aids in the growth of the upper jaw/facial bones.  The pituitary gland is also stimulated through the expansion of the saddle-shaped depression in the sphenoid cranial bone that houses the pituitary.  This has implications for our children as well. But I won’t go into them here.  While your child may be a nose breather due to low muscle tone in the tongue, it may not provide enough force for full facial development.

In talking with the two different dentists in the office, braces are not all they appear to be.  I had made the connection that there are causes to the things that ail us and one looks for solutions not band aids.  Well, I have never applied that to teeth.  Oral health takes a hit due to braces.  The dentist stated the orthodontist did what was asked of him, straightening David’s teeth and for us it was widening the palate. But what caused those things to begin with?  For David, tongue placement/mouth breathing is the issue, as well as the lack of facial bone growth.

These are the issues with braces, from my notes of the conversation I had with the dentist, as best as I can convey.   One can be allergic to the metal which causes inflammation of the gums.  The swelling prevents adequate cleaning and, over time, gum recession.  Teeth are anchored in the jaw bone.  When you start moving them with braces, you destroy the bone and new bone must be laid.  With braces only being on a couple years, not enough new bone grows which causes the teeth to shift.  Therefore, one needs to wear retainers for the rest of your life or the teeth won’t stay where they were moved to.  The root system is also compromised due to the movement.  David has some roots that are compromised.  Without adequate new bone growth, as you chew, it puts pressure on the teeth and, due to their angle, can cause teeth recession (my issue).  Brackets are an irritant and cause enamel damage. Whether you visually see it or not, it’s there. There is also an issue in the jaw when teeth are being pulled to make room for the moving and straightening.  In addition, palatal expansion only spreads the jaw from side to side, whereas other methodologies help to grow the bones all around the face.

In the end, David has straight teeth, at least for now, but the overall health of his teeth is compromised.  The cause of his issues is not rectified.  He is still a mouth breather and he doesn’t have full facial maturity.  Fortunately, his sleep apnea is not a current issue due to what expansion he’s had and his tonsils and adenoids being removed in January 2018.

If I had a “do over”, I would research the different options and start expansion earlier than age 9. I would find or educate a local provider who would support expansion at a much earlier age in a method that would allow for facial bone growth and expansion.   Ideally, the expansion would start no later than age 5-6, but my understanding is there can be success at older ages, too.   I also would have addressed his mouth breathing along the way.  It is something done in conjunction with expansion as it opens the nasal passages making it possible to breathe through the nose.  There are some devices, such as Myobrace, that claim to aid in tongue placement, as well.  If I would have known about this device sooner, we would have used it instead of braces.

Where does that leave us now?  Our holistic dentist does deal with Myobrace.  Even at 16, there is a possibility of additional growth of David’s facial bones.  The down side is the impact it would have on his $5,000, multiple-year orthodontic treatment.  I plan on starting nose breathing exercises soon since he can breathe through his nose with the expansion that has already occurred.

The specialty is orthotropics: dealing with facial bones.

To learn more, visit Orthotropics.com and look it up on YouTube.

Provider possibilities:

Holistic Dental in Center, Cornelius, NC

Dr. Crespo works with the kids and their practice works with myobrace (myobrace.com).

Other possibilities that I know nothing about, but saw the word “orthotropics” on their website:

Queen’s Road Dentistry

Ryder Orthodontics

Another method, among others, is Alforthodontics.com.

When looking for a provider it was suggested you call Myobrace or Alforthodontics (ALF) as not everyone could be in their online listing.   It also pays to call around town because often, if a membership or fee is required to be listed on a manufacturer’s website, providers may not choose to list.

Mouth breathing can be addressed with some methods such as Myobrace and the ALF. Our dentist suggested Buteyko Breathing Method by Patrick McKeown.  He has a book, but you can also look on YouTube.

 My husband and I both tape our mouths. We fold over a side to be able to get it off quickly, if needed, and only use about a 1.5” piece – just enough to keep the mouth closed.

David wasn’t happy about the tape as he claims he can’t talk to himself. I may get a strap for him instead.