Question:
My son has DS and is almost 9 years old. We have been in speech therapy since he was 1. He also has sleep apnea and had a T and A done. We just had a dentist appointment with a new dentist to address his top teeth not coming in right and being crowded. This dentist noticed a lip tie on the top and she referred us to a specialist who did not seem concerned. I am wondering if this is a common issue for DS kids?
Answer:
Thank you for your question. In looking for more information about lip tie, I noted there is a fair amount of opinion but much less research-based information.
Lip tie is caused by a frenulum (a band of tissue) that connects from the back (inside) of the upper lip to the upper gums. When it is “too short,” the lip is too tightly or closely connected to the upper gums.
There is limited academic or research literature available discussing lip tie in people with Down syndrome. One study called “Dentofacial and Cranial Changes in Down Syndrome” did not report on lip tie but did report that 13% of the individuals with DS in their study had ankyloglossia (tongue tie).
There were a few pieces I found online that are based on clinician experience (but not medical literature) that suggested that lip tie is more common in people with DS.
The American Speech-Language-Hearing Association website has an article on lip tie but like most of the information found online, it primarily addresses the impact on breastfeeding in infants or eating in children.
For an older child (not an infant) or an adult with DS, some of the questions that might be asked about lip tie include:
• What problems is it causing?
• Has it previously caused problems? (For e.g., with breastfeeding)
• Does it affect sucking from a straw?
• Does it affect speech?
Unfortunately, as noted, there seems to be little research-based guidance on whether the problem be addressed (i.e., if surgery is indicated). Data to inform us about long term complications such as dental disease, effect on teeth alignment, speech, and ability to chew (and therefore, a potential for impact on swallowing) in people with DS are lacking.
Sometimes when a person with lip tie is evaluated, the professional may determine that no treatment is indicated. Other times the approach may include treatment of the symptoms (e.g., speech therapy if speech is impaired, lactation consultation if breastfeeding is affected) and/or surgery (see more information provided by the Cleveland Clinic).
This is not something that is commonly addressed in our adolescent and adult population because there is such limited information as to the potential effects of the condition and the potential benefits of surgical intervention.