Pediatric dentists Dr. Nancy Hijjawi and Dr. Charles Czerepak (Pine Dental Care) share tips for managing dental and oral care in children with complex medical needs, including how to prepare your child with sensory differences for the dental office, tips for G-tube fed children and children with chronic vomiting, and other tips for maintaining healthy teeth and mouth. **Content advisory: This presentation includes images of poor dental hygiene and images of individuals who have trauma to the mouth and teeth from falls.
The creation of the printable guide and written summary of this presentation was developed with financial support from the American Legion Child Well-Being Foundation.
Published: January 2025
This talk explored the often-overlooked connection between oral health and overall wellbeing in individuals with ASXL-related and other neurodevelopmental conditions. The speakers highlighted how craniofacial and dental differences, combined with sensory, behavioral, and medical complexities, contribute to unique challenges in maintaining oral health. The speakers highlighted the importance of proactive, coordinated dental care as a part of multidisciplinary management.
1. Why oral health matters
Good dental health plays a vital role in nutrition, communication, and quality of life. For individuals with ASXL-related syndromes, such as Bohring-Opitz, Shashi-Pena, and Bainbridge-Ropers, oral-motor development and craniofacial growth can be significantly affected by underlying genetic mechanisms. Poor oral health can impair feeding and speech, increase infection risk, and affect self-esteem and social participation. Oral health must be treated as a core medical need.
2. Common oral and craniofacial features
Features often include high or narrow palates, micrognathia, delayed tooth eruption, missing teeth, bruxism, and weak oral tone from hypotonia. Feeding difficulties may stem from both structural and sensory causes. Understanding these features helps tailor preventive and behavioral strategies.
3. Clinical barriers to dental care
Families face multiple barriers such as sensory sensitivities, communication challenges, anxiety from past experiences, and limited provider awareness. Preparation, patience, and partnership were recommended, using desensitization, social stories, and gradual familiarization to help children tolerate dental visits.
4. Preventive strategies and home care
Start toothbrushing as soon as the first tooth appears. Use fluoride toothpaste, maintain consistent daily routines, and involve occupational or speech therapists for oral-motor challenges. Regular check-ups every six months are essential. Families should note drooling, chewing changes, or bite differences when speaking to clinicians.
5. Managing treatment in clinical settings
Complex cases may need hospital-based dentistry or sedation. Interdisciplinary coordination between pediatricians, neurologists, anesthesiologists, and dentists ensures safety. Adaptive positioning, suction aids, and ethical stabilization techniques support comfort and cooperation. Care must always be individualized.
6. Research and data gaps
There is limited systematic data on dental outcomes in rare genetic syndromes. Collecting oral and craniofacial data within natural history studies could identify genotype-phenotype patterns. Collaboration between geneticists, dentists, and researchers is key to improving evidence-based care.
7. Empowering families and clinicians
Families are central to sustaining oral health. Clinicians should offer realistic guidance, connect families with experienced specialists, and promote peer learning. Expanding training for dental professionals in neurodevelopmental care will improve access and outcomes.
Conclusion
Oral health is an essential, yet often neglected, part of care for individuals with ASXL-related and neurodevelopmental conditions. With early planning, collaboration, and family-centered strategies, clinicians can greatly enhance comfort and wellbeing. Dental care is developmental care, and every
supported smile builds lifelong health and dignity.
The information presented here is for educational purposes only. This information is not medical advice and should not be treated as such. You should always talk to your or your family member’s health care professionals for diagnosis and treatment, including information regarding which drugs or treatment may be appropriate for you or your family member. We do not represent or warrant that any particular treatment is safe, appropriate or effective for you or your family member. In the event of a medical emergency, you should contact your doctor immediately or call your local emergency service.
