Overview
This entry, listed under Orphanet code 138080, refers to a condition previously described as a 'Syndromic sucking/swallowing disorder with unidentified syndrome.' It has been marked as OBSOLETE in medical databases, meaning it is no longer considered a distinct or active diagnostic category. Originally, this term was used to describe babies or young children who had serious difficulty sucking and swallowing as part of a broader syndrome that doctors could not fully identify or classify at the time. Sucking and swallowing problems in newborns and infants can be caused by many different underlying conditions, including neurological disorders, genetic syndromes, muscular problems, or structural abnormalities of the mouth and throat. Because this category is obsolete, patients who were once given this label have likely been reclassified under more specific diagnoses as medical knowledge and genetic testing have advanced. If you or your child was previously diagnosed with this condition, it is important to seek a re-evaluation from a clinical geneticist or pediatric specialist who can use modern diagnostic tools, including genetic testing, to identify the specific underlying cause of the feeding difficulties. Identifying the precise diagnosis is essential for guiding treatment, understanding the expected course of the condition, and connecting with appropriate support resources.
Key symptoms:
Difficulty sucking during feedingDifficulty swallowing (dysphagia)Poor weight gain or failure to thriveChoking or gagging during feedsNasal regurgitation of milk or foodAspiration (food or liquid entering the lungs)Recurrent lung infections from aspirationWeak cryLow muscle tone (floppiness)Developmental delaysAdditional features of an unidentified syndrome
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Syndromic sucking/swallowing disorder with unidentifyed syndrome.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Syndromic sucking/swallowing disorder with unidentifyed 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: Syndromic sucking/swallowing disorder with unidentifyed syndrome.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
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 modern genetic testing been done to identify the specific cause of my child's feeding difficulties?,Should we consider whole exome or whole genome sequencing?,What type of feeding support does my child need right now?,Is my child at risk for aspiration, and how can we prevent it?,What specialists should we be seeing regularly?,Are there any new diagnoses or syndromes that might explain my child's symptoms?,What is the long-term outlook for my child's feeding and development?
Common questions about OBSOLETE: Syndromic sucking/swallowing disorder with unidentifyed syndrome
What is OBSOLETE: Syndromic sucking/swallowing disorder with unidentifyed syndrome?
This entry, listed under Orphanet code 138080, refers to a condition previously described as a 'Syndromic sucking/swallowing disorder with unidentified syndrome.' It has been marked as OBSOLETE in medical databases, meaning it is no longer considered a distinct or active diagnostic category. Originally, this term was used to describe babies or young children who had serious difficulty sucking and swallowing as part of a broader syndrome that doctors could not fully identify or classify at the time. Sucking and swallowing problems in newborns and infants can be caused by many different underlyi
At what age does OBSOLETE: Syndromic sucking/swallowing disorder with unidentifyed syndrome typically begin?
Typical onset of OBSOLETE: Syndromic sucking/swallowing disorder with unidentifyed syndrome is neonatal. Age of onset can vary across affected individuals.