Overview
This entry, listed under Orphanet code 138072, refers to sucking and swallowing disorders (also called dysphagia or feeding difficulties) that occur as part of a recognized genetic or developmental syndrome. This is classified as an 'obsolete' entry in Orphanet, meaning it is no longer used as a standalone diagnosis. Instead, the sucking and swallowing problems are now described as a symptom or feature within the specific syndrome that causes them, rather than being coded separately. Sucking and swallowing difficulties in newborns and infants can be a significant early sign of many different genetic syndromes. These problems happen when the muscles and nerves involved in feeding do not work properly. Babies may have trouble latching, coordinating sucking and breathing, or moving food safely from the mouth to the stomach. This can lead to poor weight gain, choking, aspiration (food entering the lungs), and nutritional deficiencies. Because this is not a single disease but rather a symptom seen across many syndromes, treatment depends entirely on the underlying condition. Management typically involves specialized feeding techniques, speech and occupational therapy, and sometimes tube feeding. Identifying the specific syndrome responsible is essential for proper care and prognosis.
Key symptoms:
Difficulty sucking during breastfeeding or bottle feedingChoking or gagging while feedingPoor weight gain or failure to thriveFrequent spitting up or vomitingNasal regurgitation (milk coming out of the nose)Coughing during or after mealsProlonged feeding timesRefusing to eat or showing distress during feedingRecurrent lung infections from aspirationDrooling more than expected for ageWeak cryLow muscle tone (floppiness)
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Sucking/swallowing disorder associated with an identified syndrome.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Sucking/swallowing disorder associated with an identified syndrome.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to OBSOLETE: Sucking/swallowing disorder associated with an identified syndrome.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What underlying syndrome or condition is causing my child's feeding difficulties?,Is my child at risk for aspiration, and should we do a swallow study?,Would my child benefit from a feeding tube, and if so, is it temporary or long-term?,What type of feeding therapy is recommended, and how often should sessions occur?,Are there genetic tests that could help identify the cause of these problems?,What are the warning signs that I should go to the emergency room?,Will my child's feeding difficulties improve over time or are they likely to be permanent?
Common questions about OBSOLETE: Sucking/swallowing disorder associated with an identified syndrome
What is OBSOLETE: Sucking/swallowing disorder associated with an identified syndrome?
This entry, listed under Orphanet code 138072, refers to sucking and swallowing disorders (also called dysphagia or feeding difficulties) that occur as part of a recognized genetic or developmental syndrome. This is classified as an 'obsolete' entry in Orphanet, meaning it is no longer used as a standalone diagnosis. Instead, the sucking and swallowing problems are now described as a symptom or feature within the specific syndrome that causes them, rather than being coded separately. Sucking and swallowing difficulties in newborns and infants can be a significant early sign of many different
At what age does OBSOLETE: Sucking/swallowing disorder associated with an identified syndrome typically begin?
Typical onset of OBSOLETE: Sucking/swallowing disorder associated with an identified syndrome is neonatal. Age of onset can vary across affected individuals.