OBSOLETE: Sucking/swallowing disorder associated with posterior fossa anomalies

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ORPHA:138109
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Overview

This entry, previously listed in the Orphanet rare disease database under the name 'Sucking/swallowing disorder associated with posterior fossa anomalies,' has been marked as OBSOLETE. This means it is no longer considered a standalone disease classification. The term originally described difficulties with sucking and swallowing (also called dysphagia) that occurred in newborns or infants who also had structural abnormalities in the back part of the brain, known as the posterior fossa. The posterior fossa is the area at the base of the skull that contains the cerebellum and brainstem — parts of the brain that help control swallowing, breathing, and coordination. Because this entry is obsolete, the feeding and swallowing problems it described are now typically classified under the specific underlying posterior fossa condition causing them, such as Chiari malformation, Dandy-Walker malformation, or other brainstem or cerebellar abnormalities. Patients who were previously given this diagnosis should work with their medical team to identify the specific underlying brain anomaly responsible for their symptoms. Treatment generally focuses on managing the feeding difficulties (such as specialized feeding techniques, thickened feeds, or tube feeding) while addressing the root cause of the posterior fossa abnormality through neurosurgical or supportive care as needed.

Key symptoms:

Difficulty sucking during feedingDifficulty swallowing (dysphagia)Choking or gagging during feedsPoor weight gain or failure to thriveAspiration (food or liquid entering the airway)Nasal regurgitation of milk or formulaBreathing difficulties during feedingWeak or uncoordinated suck reflexExcessive droolingRecurrent lung infections from aspiration

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: Sucking/swallowing disorder associated with posterior fossa anomalies.

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No actively recruiting trials found for OBSOLETE: Sucking/swallowing disorder associated with posterior fossa anomalies at this time.

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No specialists are currently listed for OBSOLETE: Sucking/swallowing disorder associated with posterior fossa anomalies.

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Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to OBSOLETE: Sucking/swallowing disorder associated with posterior fossa anomalies.

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Community

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Caregiver Resources

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Questions for your doctor

Bring these to your next appointment

  • Q1.What specific brain abnormality is causing my child's feeding difficulties?,Is the swallowing problem likely to improve over time or with treatment?,Does my child need a swallow study to check if feeding is safe?,Should we consider tube feeding, and if so, for how long?,Is surgery an option to address the underlying brain anomaly?,Should my child have genetic testing to look for an underlying syndrome?,What therapies are available to help improve my child's feeding and swallowing?

Common questions about OBSOLETE: Sucking/swallowing disorder associated with posterior fossa anomalies

What is OBSOLETE: Sucking/swallowing disorder associated with posterior fossa anomalies?

This entry, previously listed in the Orphanet rare disease database under the name 'Sucking/swallowing disorder associated with posterior fossa anomalies,' has been marked as OBSOLETE. This means it is no longer considered a standalone disease classification. The term originally described difficulties with sucking and swallowing (also called dysphagia) that occurred in newborns or infants who also had structural abnormalities in the back part of the brain, known as the posterior fossa. The posterior fossa is the area at the base of the skull that contains the cerebellum and brainstem — parts o

At what age does OBSOLETE: Sucking/swallowing disorder associated with posterior fossa anomalies typically begin?

Typical onset of OBSOLETE: Sucking/swallowing disorder associated with posterior fossa anomalies is neonatal. Age of onset can vary across affected individuals.