Join Smitha Joshi, MS, CCC-SLP, and Stefani Wade, MS, CCC-SLP, from Assential Therapies Inc. as they dive into essential aspects of feeding and mealtime for children with medical and developmental needs. What you’ll learn:
- Key medical and developmental factors affecting feeding
- The importance of a multidisciplinary team in supporting feeding challenges
- The role of a speech-language pathologist (SLP) in assessment and intervention
- What to expect during a feeding evaluation and therapy
- Practical strategies for mealtime at home
This session is perfect for parents, caregivers, and professionals looking to better understand feeding therapy and how to support children with complex feeding needs.
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: February 2025
Feeding and swallowing are complex developmental processes that are often affected in children with ASXL-related syndromes such as Bohring-Opitz, Shashi-Pena, and Bainbridge-Ropers. These challenges extend beyond nutrition – they impact respiratory health, communication, and family quality of life. Early identification and multidisciplinary intervention are critical.
1. Why feeding and swallowing matter
Feeding integrates motor control, respiration, posture, and sensory regulation. In ASXL syndromes, neurological tone differences and structural challenges disrupt the suck–swallow–breathe pattern, leading to inefficiency, aspiration, and fatigue. Early dysphagia also influences speech development and caregiver–child bonding.
2. Common oral-motor features
Children often present with low muscle tone, weak suck, poor swallow initiation, and delayed transition to solids. Oral aversion, reflux, drooling, and fatigue are frequent. These features vary by age and severity but commonly persist beyond infancy.
3. Clinical assessment
Evaluation includes case history, observation of feeding and posture, and instrumental studies such as Videofluoroscopic Swallow Study (VFSS) or Fiberoptic Endoscopic Evaluation of Swallowing (FEES). These help detect silent aspiration and guide safe feeding plans.
4. Intervention and management
Treatment prioritizes safety while fostering positive feeding experiences. Key strategies include upright positioning, pacing, texture progression, and oral-motor strengthening. Sensory-based play and gentle exposure reduce aversion. In some cases, tube feeding supports nutrition while oral experiences are safely maintained.
5. Multidisciplinary collaboration
Feeding disorders require coordination among Speech-Language Pathologist (SLPs), dietitians, occupational therapists, gastroenterologists, and physiotherapists. Collaboration ensures continuity of care between home, clinic, and school settings.
6. Supporting families
Caregivers need education and emotional support to manage feeding safely. Clinicians can empower families by providing written plans, demonstrating safe positioning, and encouraging play-based food exploration. Progress may be gradual but meaningful.
7. Future direction
Research aims to develop standardized tools for complex genetic conditions and to study tone distribution, airway structure, and sensory-based therapies. Improved data will enable earlier and more targeted interventions.
Conclusion
Feeding and swallowing difficulties are a common feature of ASXL-related syndromes. With early assessment, collaborative care, and family-focused support, children can achieve safer, more positive feeding experiences, strengthening both health and connection.
Additional related resources include:
- Guide for considering a surgical feeding tube for your child (text and PDF)
- Gastrointestinal case study series (text and PDF)
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.
