With David R. Musich, DDS, MS
OP: Do you interact with Down syndrome (DS) patients differently than with your other patients?
Musich: When parents fill out the child’s health history and indicate that their child has a special need, we ask the parent to fill out the AAO’s Supplemental Health History form for children with special needs (developed by the AAO’s Council on Orthodontic Practice). This provides us with very important insights from the patient’s parents regarding key factors that need to be taken into consideration when treating their child. It should be mentioned that we do not treat our patients with DS with any treatment-planning bias. We start with the thought of achieving an ideal outcome. Like with other children, if we find that we are not getting a reasonable response, then we might reset our objectives after discussing this with the parents and child.
OP: Have you had training sessions for your staff in how to treat DS patients?
Musich: This is a very important question. Yes, we have the good fortune to have one clinical staff member (Jolette Porter) who has a background in early-child development and who worked with children with autism after college. Jolette and Matthew J. Busch, DDS, (my partner, who is excellent in the management of special-needs children) have had periodic training programs with clinical staff to help them develop skills to manage and customize the treatment situation (private room, longer appointments, etc) so that we are able to achieve the best results possible. Most of the clinical staff follow the lead of the doctors. We are very positive in our approach to treatment and to treatment planning. Orthodontic assistants who have not worked with children with special needs do require several observation appointments to gain their own self-confidence in working in the smaller oral cavity.
OP: What’s the biggest challenge in dealing with these patients?
Musich: Overcoming “iatrogenic negative conditioning” that parents may have due to faulty information about kids with DS and orthodontics.
Establishing an office setting diminishes the anxieties and fears that kids with DS may feel more than other children of similar age. (Does wearing a dental mask upset them? Does the dental light bother their eyes? Does the sound of the high-speed handpiece or suction bother them? What about their gag reflex?) By learning about their sensitivities, we can take steps to desensitize them and create good experiences.
Two things that we have done to consistently create good experiences are:
1) Establish appointment patterns so that each appointment is a similar experience—same chair, same private room, etc.
2) Incorporate a customized patient-manager system in which two assistants are assigned to the patient and will see him or her at each visit to stay familiar with established patterns.
With the incorporation of some of the above strategies, we frequently see the older DS kids show newfound independence, come to the chair on their own, and seem very proud of their comfort and maturity.
OP: What advice do you have for orthodontists who are considering treating DS patients?
Musich: Recently (July 2006) I published a guest editorial in the Angle Orthodontist that was motivated by the feedback we have received from parents of DS patients.1 The point of the editorial was to point out how important leadership from members of the orthodontic specialty has become in the area of orthodontic treatment for kids with DS. All children with DS have significant orthodontic needs. Thus far, there is limited training in the graduate programs to help residents understand what their role might be in the management of malocclusions of children with DS. My advice to orthodontists considering treating kids with DS:
1) Use the supplemental health history questionnaire developed by the AAO—it is very helpful.4
2) Read the quote from Mrs Picchi—parent of Angie, who was treated about 8 years ago. Read the articles listed as references below.1–6
3) Spend some time discussing the appropriate management of dental anxiety with your staff. This is the main issue that seems to be common in kids with DS. Find out if any staff are interested in taking the lead with the orthodontist in doing specific research to understand additional complexities in the behavioral management of anxiety. Working with local pediatric dentists can be very helpful to learn some of the behavioral techniques they use with their DS patients.
4) Go slowly. Explain everything. Use the “show and tell” technique. Develop the child’s trust through showing respect for his or her comfort level with the procedures.
5) Realize that you are not going to set any speed records in the treatment progress, but in general you can expect very good results, with occasional limited outcomes.
6) When the confidence level improves, offer to give a presentation to the local chapter of the National Association for Down Syndrome about the Orthodontic Possibilities for Kids with Down Syndrome.
OP: What’s the biggest reward of dealing with these patients?
Musich: The rewards are similar to those experienced from other orthodontic patients. Specially noticed, however, are expressions of appreciation from parents that our office is willing to take a little extra time to provide their children with the dental care that they need. Many parents indicate that they feel discouraged by other medical and dental offices that they have visited. It feels great to improve the oral health and appearance of kids with DS. As orthodontists, we have been trained to have unique skills, and kids with DS need our skills to achieve the quality of life they deserve. Creating optimum access to care is important, and DS parents want their children to have proper care.
One of our interesting findings in working with DS children is that many of them become very “goal oriented”; they love the positive reinforcement and encouragement of both the doctor and staff. Of course, the best reward is knowing you’ve made a friend with the DS child who you’ve helped orthodontically. They let you know with a loving hug, a big “high five” at the end of treatment, and a very big smile.
OP: How did you first get into treating patients with DS?
Musich: From my experience at Children’s Hospital of Philadelphia, where I was the orthodontic consultant on the craniofacial anomalies/cleft palate team, I learned that as orthodontists we have the training and skills that could help a broad range of children with problems of dental development and facial growth. This experience gave me the confidence to apply orthodontic know-how to kids with special needs, especially to kids with DS, since they have so many orthodontic needs. My interest was further enhanced 14 years ago when I learned that I was the proud uncle of Allison, who was born with DS. Having a partner (Matt Busch and staff) who share my love for orthodontics and how orthodontic treatment can change the lives of children with DS has made me even more of an advocate for our specialty’s leadership in this area.1
OP: How many DS patients are you currently treating?
Musich: We have about 20 kids with DS in some phase of treatment at this time. Busch and some of my clinical staff give a short seminar to parents of kids with DS (Ups for Downs parent group) once every other year. The title of the program is “Orthodontic Possibilities for Kids with Down Syndrome.” From this presentation it seems that parents are more confident to come for an examination and hear about some options for treatment, as well as to learn about appropriate timing.
From the parents who are coming to see us, we are hearing that many of them have had orthodontic evaluations but were put on a recall or were told not much could be done without jaw surgery.
OP: Is there one malocclusion that is most common among these patients?
Musich: The most common problem among children with DS is transverse deficiency of the maxilla (65% have this condition). Also, we frequently see Class III problems with and without a functional shift of the maxilla forward (54% have this condition). Other conditions that benefit from orthodontic intervention that are frequently present for children with DS are congenital absence of incisors and premolars and canine impactions.
OP: Is there a difference in compliance between DS patients and your other patients?
Musich: We are not finding compliance problems with the DS kids. Usually, the parents are very helpful with assisting their children with their oral hygiene needs. We occasionally have a problem with the dexterity required to place elastics for use in certain stages of treatment. We try to create larger—but also comfortable—attachments for the elastics. Oral hygiene can sometimes be an issue due to the tendency for gingival hyperplasia and the presence of pre-existing heart issues. Working with the patient’s cardiologist, pediatrician, and pediatric dentist is important to be sure that the patient does not jeopardize his or her overall health to achieve an orthodontic correction. This hurdle can be as easily overcome as it is with other patients with requirements for premedication and good oral hygiene.
OP: Are your DS patients all children?
Musich: At this time, we are seeing mostly children (ages 6 to 20). We have one adult patient who returns periodically to maintain her bonded lingual arch.
David R. Musich, DDS, MS, is the current president of the E.H. Angle Society of Orthodontics and is a professor of clinical orthodontics at the University of Pennsylvania and the University of Illinois, Chicago. He can be reached at [email protected]
Note: These questions were answered as collaborative effort by David R. Musich, DDS, MS; Matthew J. Busch, DDS; and Jolette Porter, BS, CDA.
1. Musich DR. Orthodontic intervention and patients with Down syndrome: The role of inclusion, technology, and leadership. Angle Orthod. 2006;76:734–735.
2. Pilcher ES. Dental care for the patient with Down Syndrome. Down Syndrome Research and Practice. 1998;5(3):111–116.
3. Desai SS. Down Syndrome. A review of the literature. Oral Surg Oral Med Oral Pathol Oral Radiol Endod. 1997;84:279–85.
4. Cohen I. Health care guidelines for individuals with Down Syndrome. Down Syndrome Quarterly. 1996;1(2).
5. New supplemental Orthodontic History Questionnaire designed to help doctors, staff meet needs of patients. The Bulletin. American Association of Orthodontists Newsletter.2006;24(1).
6. More smiles for patient with disabilities. Orthodontists open doors to accommodate patients with special needs. The Bulletin. American Association of Orthodontists Newsletter. 2004;22(1).
“I do believe that Angie taught everyone on the team a few very important things along the road. A person with a disability is still just a person who deserves to be treated with dignity and respect. Never assume someone doesn’t understand what you’re saying because they don’t speak as well as you. If you have the patience to really listen to what they have to say, you will realize that they have likes and dislikes, friends and interests, hopes and dreams just like the rest of us. If you give them a chance, you will be amazed at some of the gifts they have to share and how they can bring you so much joy.”—Angela’s mom, Mrs Picchi
Sample of Supplemental Questionnaire for Children With Special Needs
On your health history you have identified your child with______________________________
Would you please help us understand more about this condition and how it might affect your child in a dental/orthodontic setting?
1) Could you tell us about the condition your child has and how it affects his/her behavior.
2) Please describe any significant fears or anxieties that your child may experience during visits to health care professionals (including dentists).
3) Has the anxiety or fear prevented any necessary treatment? Please describe.
4) Are there any strategies that help your child open up to new experiences such as a visit to a new doctor (Examples: show and tell, humor, going very slowly; modeling with parent or other sibling, other examples)?
5) Are there physical disabilities that need to be taken into consideration? (Examples: Difficulty with fine motor skills)
6) Are there learning disabilities that need to be taken into consideration?
(Examples: Auditory processing difficulties, sensory integration dysfunction, or speech and language difficulties)
7) Any additional information that might help us to provide a positive office experience for your child?