Costello Syndrome diet. Is there a diet which improves the quality of life of people with Costello Syndrome?

There is no specific "Costello Syndrome diet" that cures the condition, but tailored nutritional management is essential to address failure to thrive and gastrointestinal challenges. Most individuals with Costello Syndrome require a high-calorie, nutrient-dense approach to support growth, often supervised by a metabolic dietitian to manage feeding difficulties or dysphagia.

Are there specific dietary modifications for Costello Syndrome?

Because children with Costello Syndrome often experience severe feeding difficulties, failure to thrive, and gastroesophageal reflux disease (GERD), dietary modifications are primarily focused on caloric density and mechanical texture. Many patients with Costello Syndrome require fortified formulas or calorie-dense foods to meet growth milestones. There is currently no clinical evidence supporting restrictive diets like ketogenic or anti-inflammatory protocols for managing Costello Syndrome; in fact, such restrictions may risk further nutrient deficiencies in an already vulnerable population.

How can nutrition support common Costello Syndrome symptoms?

Managing the gastrointestinal symptoms of Costello Syndrome requires a personalized approach. Nutritional strategies often include:

• Caloric Fortification: Adding healthy fats (e.g., MCT oils or avocado) to meals to increase energy intake without increasing volume.


• Texture Modification: If dysphagia is present, pureed or thickened foods may be necessary to prevent aspiration.


• Small, Frequent Meals: This helps manage GERD, a frequent concern in Costello Syndrome.


• Hydration: Ensuring adequate fluid intake is critical, especially if the patient is on medications that may cause constipation.

Do supplements play a role in Costello Syndrome?

There is limited high-level clinical evidence for specific supplements in Costello Syndrome. Some clinicians may recommend multivitamins or iron if blood work indicates a deficiency, which is common in children with poor oral intake. Always consult a metabolic specialist before starting supplements, as some may interact with medications used to treat the cardiac or oncological risks associated with Costello Syndrome.

Next steps

• Consult with a pediatric gastroenterologist or a registered dietitian specializing in metabolic disorders.


• Monitor growth charts closely to determine if supplemental enteral feeding (e.g., G-tube) is necessary for your child.


• Join the 13 members of the DiseaseMaps.org community to share experiences regarding feeding strategies.


• Schedule regular screenings for cardiac health and tumor surveillance, as these impact overall metabolic needs.

Medical disclaimer: This information is for educational purposes only and does not replace professional medical advice, diagnosis, or treatment; always consult your healthcare provider regarding dietary changes.

References

• NIH Genetic and Rare Diseases (GARD) Information Center: Costello Syndrome Overview.


• Orphanet: Costello Syndrome (ORPHA:209).


• Costello Kids: Resources for families living with Costello Syndrome.


• OMIM (Online Mendelian Inheritance in Man): Entry #218040 (Costello Syndrome).