Overview
This entry, listed under Orphanet code 138221, refers to a rare sucking and swallowing disorder that has been marked as 'OBSOLETE' in the Orphanet classification system. This means the condition is no longer recognized as a distinct standalone diagnosis in current medical databases. Sucking and swallowing difficulties (also called dysphagia in the case of swallowing problems) in newborns and infants can occur as isolated findings or, more commonly, as symptoms of other underlying conditions such as neurological disorders, genetic syndromes, structural abnormalities of the mouth or throat, or neuromuscular diseases. When a baby has trouble sucking or swallowing, it can lead to poor feeding, weight loss, choking, aspiration (food or liquid entering the lungs), and failure to thrive. These problems are often noticed shortly after birth. Because this specific Orphanet entry is now obsolete, patients and families who were previously given this diagnosis should work with their medical team to determine whether a more specific underlying cause can be identified. Modern genetic testing and advanced imaging have made it possible to find more precise diagnoses for many children who have feeding difficulties. Treatment for sucking and swallowing disorders generally focuses on ensuring safe and adequate nutrition. This may include specialized feeding techniques, thickened feeds, nasogastric tube feeding, speech and language therapy focused on oral motor skills, and in some cases surgical interventions. The outlook depends heavily on the underlying cause of the feeding difficulty.
Key symptoms:
Difficulty latching onto the breast or bottleWeak or uncoordinated suckingChoking or gagging during feedingCoughing during or after mealsMilk or formula leaking from the mouth during feedingPoor weight gain or failure to thriveFrequent spitting up or vomitingBreathing difficulties during feedingNasal regurgitation (food coming out of the nose)Prolonged feeding timesRefusal to eat or irritability during feedingRecurrent lung infections from aspiration
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Rare sucking/swallowing disorder.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Rare sucking/swallowing disorder.
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: Rare sucking/swallowing disorder.
Community
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Caregiver Resources
NORD Caregiver Resources
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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.Has an underlying cause for my child's feeding difficulties been identified, and if not, what further testing is recommended?,Is my child getting enough nutrition, and should we consider supplemental feeding methods?,Is my child at risk for aspiration, and should we do a swallow study?,What type of feeding therapy would be most helpful, and how often should sessions occur?,Are there any genetic tests that should be done to look for an underlying condition?,What are the warning signs that I should go to the emergency room?,What is the expected timeline for improvement, and when might my child outgrow these difficulties?
Common questions about OBSOLETE: Rare sucking/swallowing disorder
What is OBSOLETE: Rare sucking/swallowing disorder?
This entry, listed under Orphanet code 138221, refers to a rare sucking and swallowing disorder that has been marked as 'OBSOLETE' in the Orphanet classification system. This means the condition is no longer recognized as a distinct standalone diagnosis in current medical databases. Sucking and swallowing difficulties (also called dysphagia in the case of swallowing problems) in newborns and infants can occur as isolated findings or, more commonly, as symptoms of other underlying conditions such as neurological disorders, genetic syndromes, structural abnormalities of the mouth or throat, or n
At what age does OBSOLETE: Rare sucking/swallowing disorder typically begin?
Typical onset of OBSOLETE: Rare sucking/swallowing disorder is neonatal. Age of onset can vary across affected individuals.