Feeding Issues with Child that has Beckwith-Wiedemann Syndrome
A parent or therapist working with a child who has Beckwith-Wiedemann Syndrome describes persistent tongue protrusion, difficulty with textured foods, and challenges with open cup drinking. This article outlines the causes of macroglossia-related feeding issues and provides a TalkTools therapist's strategies for building tongue retraction, jaw stability, and safe feeding skills.
TT
TalkTools Trained Therapist, Feeding Specialist
5 min read
Key Takeaways
Children with Beckwith-Wiedemann Syndrome (BWS) often present with macroglossia (enlarged tongue), which can cause forward resting posture and tongue protrusion.
Therapy should prioritize teaching the tongue to retract into the oral cavity rather than resting on or past the lips.
Straw drinking (e.g., using a Honey Bear) and Horn hierarchies are effective ways to promote lip closure and build the muscle memory needed for tongue retraction.
Jaw stability must be established using Bite Blocks and Bite Tubes before advancing textures, to prevent unsafe munching patterns.
Quick Answer
For children with Beckwith-Wiedemann Syndrome, an enlarged tongue (macroglossia) frequently disrupts safe feeding and swallowing. The primary goal of Oral Placement Therapy (OPT) in these cases is to encourage tongue retraction, establish jaw stability, and promote strong lip closure. Implementing tools like the Straw Hierarchy (starting with the Honey Bear) and using Bite Blocks will help teach the motor plans necessary for safe feeding without relying on compensatory tongue protrusion.
Reader Question
From a Reader
I am working with a young child who has Beckwith-Wiedemann Syndrome. Because of macroglossia (enlarged tongue), the child struggles with significant tongue protrusion during feeding. They have difficulty transitioning to textured foods and open cup drinking because the tongue is constantly resting forward or pushing outward. What TalkTools exercises or strategies can help with tongue retraction and improving their feeding skills?
Therapist Answer
TalkTools Trained Therapist
This is a common and challenging presentation for children with Beckwith-Wiedemann Syndrome (BWS). Because the tongue is physically larger than the available intraoral space, it naturally seeks room by resting forward, often past the lips. This forward posture interferes with lip seal, prevents the development of a mature swallowing pattern, and makes managing textured foods very difficult.
Our goal with Oral Placement Therapy (OPT) is not to change the structural size of the tongue, but to maximize its functional posture within the mouth. We must teach the tongue to retract and the jaw to stabilize independently. I recommend beginning with the TalkTools Straw Hierarchy, starting with the Honey Bear cup. Straw drinking requires active lip rounding and naturally draws the tongue back into the mouth to create suction. This directly opposes the habitual forward tongue thrust.
In addition to straw drinking, the Horn Hierarchy can be highly effective. Blowing requires significant lip closure and forces the tongue into a retracted position to channel the air. Finally, to address the chewing difficulties, you must build jaw stability. A protruding tongue often compensates for a weak jaw. Using Bite Blocks and Bite Tubes to practice graded, symmetrical jaw movement will give the tongue a stable base, allowing it to begin lateralizing food rather than just pushing it forward and out.
When creating a treatment plan for a client with BWS, focus on these specific Oral Placement Therapy (OPT) targets to improve feeding safety and efficiency.
Builds suction; naturally encourages tongue retraction into the oral cavity.
Poor lip seal / Open mouth posture
Horn Hierarchy
Strengthens the orbicularis oris, improving lip closure over the tongue.
Jaw sliding or instability
TalkTools Bite Blocks
Promotes symmetrical jaw grading and a stable base for the tongue.
Munching with tongue protrusion
TalkTools Bite Tubes
Develops a safe rotary chew, replacing the forward/backward tongue movements.
Clinical Rule: Maximize function before considering surgical reduction. Many children with BWS can achieve functional, safe feeding and proper oral resting posture through targeted Oral Placement Therapy, which can often delay or negate the need for invasive tongue reduction surgeries.
The comprehensive TalkTools feeding therapy book covering oral motor assessment and treatment for developing jaw stability, lip closure, and the tongue retraction skills required for managing macroglossia and advancing diets safely.
What is Beckwith-Wiedemann Syndrome and how does it affect feeding?
Beckwith-Wiedemann Syndrome (BWS) is a genetic overgrowth disorder that frequently presents with macroglossia (an unusually large tongue). This enlarged tongue limits intraoral space, leading to a forward resting posture, tongue protrusion during eating, and difficulties with mature swallowing and chewing.
Will oral motor therapy reduce the size of the tongue?
No, Oral Placement Therapy (OPT) does not reduce the actual size of the tongue. However, it trains the child to improve tongue resting posture, retraction, and function within the oral cavity. This improved muscle memory can significantly improve feeding safety and efficiency, often delaying or preventing the need for surgical tongue reduction.
Why is straw drinking recommended for children with macroglossia?
Straw drinking requires active lip rounding and forces the tongue to retract back into the mouth to create the suction necessary to draw liquid upward. This directly counteracts the forward tongue posture commonly seen in children with BWS, helping to build muscle memory for an improved oral resting posture. The Honey Bear Cup is an ideal starting point.
How do we improve chewing when the tongue is always protruding?
Before advancing food textures, you must establish jaw stability. Tools like Bite Blocks and Bite Tubes help teach the jaw to move vertically and diagonally independently of the tongue. Once the jaw is stable, the tongue has a secure base from which to lateralize food without constantly thrusting forward.
