Overview
This entry, previously known as 'Sucking/swallowing disorder associated with suprabulbar anomalies,' is now classified as obsolete in the Orphanet rare disease database (code 138101). This means the condition has been retired as a standalone diagnosis, likely because it has been reclassified, merged into another condition, or better understood under a different name. The original term described difficulties with sucking and swallowing in infants and children that were caused by problems in the brain areas above the brainstem (called suprabulbar regions). These brain areas help control the muscles used for feeding and swallowing. Babies and children with this type of problem may have had trouble breastfeeding or bottle-feeding, frequent choking, aspiration (food or liquid going into the lungs), poor weight gain, and drooling. Because this is now an obsolete classification, patients and families who were previously given this diagnosis should work with their medical team to determine the current, updated diagnosis that best describes their condition. Related conditions may include Worster-Drought syndrome (congenital suprabulbar paresis), which involves weakness of the muscles of the mouth, tongue, and throat due to brain abnormalities. Treatment for sucking and swallowing disorders of this type is generally supportive and may include speech and feeding therapy, modified food textures, and in severe cases, tube feeding.
Key symptoms:
Difficulty sucking during feedingTrouble swallowing food or liquidsChoking or gagging during mealsFood or liquid going into the lungs (aspiration)DroolingPoor weight gain or failure to thriveDifficulty breastfeeding or bottle-feedingNasal regurgitation (milk coming out of the nose)Weak crySpeech difficulties in older childrenRecurrent chest infections from aspiration
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 suprabulbar anomalies.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Sucking/swallowing disorder associated with suprabulbar anomalies.
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 suprabulbar anomalies.
Community
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Caregiver Resources
NORD Caregiver Resources
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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.Since this diagnosis is now obsolete, what is the current or updated name for my child's condition?,What is causing the sucking and swallowing difficulties — is there a specific brain abnormality?,Should my child have genetic testing to look for an underlying cause?,What type of feeding therapy is recommended, and how often should sessions occur?,Is my child at risk for aspiration, and what signs should I watch for?,Will my child need a feeding tube, and if so, is it likely to be temporary or long-term?,What is the expected outlook for my child's feeding and swallowing abilities as they grow?
Common questions about OBSOLETE: Sucking/swallowing disorder associated with suprabulbar anomalies
What is OBSOLETE: Sucking/swallowing disorder associated with suprabulbar anomalies?
This entry, previously known as 'Sucking/swallowing disorder associated with suprabulbar anomalies,' is now classified as obsolete in the Orphanet rare disease database (code 138101). This means the condition has been retired as a standalone diagnosis, likely because it has been reclassified, merged into another condition, or better understood under a different name. The original term described difficulties with sucking and swallowing in infants and children that were caused by problems in the brain areas above the brainstem (called suprabulbar regions). These brain areas help control the musc
At what age does OBSOLETE: Sucking/swallowing disorder associated with suprabulbar anomalies typically begin?
Typical onset of OBSOLETE: Sucking/swallowing disorder associated with suprabulbar anomalies is neonatal. Age of onset can vary across affected individuals.