OBSOLETE: Sucking/swallowing disorder associated with basal ganglia anomalies

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:138104
Who is this for?
Show terms as
8Treatment centers1Financial resources

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

This entry, previously known as 'Sucking/swallowing disorder associated with basal ganglia anomalies,' is an obsolete (retired) disease classification in the Orphanet rare disease database. It was used to describe a condition in which newborns or infants had serious difficulty sucking and swallowing, linked to abnormalities in a part of the brain called the basal ganglia. The basal ganglia are deep brain structures that help control movement, coordination, and certain automatic functions like swallowing. When these structures do not develop properly or are damaged, basic feeding functions can be severely impaired. Because this classification is now obsolete, the condition it described has likely been reclassified under a more specific or updated diagnosis. Patients and families who were previously given this diagnosis should work with their medical team to determine the current, more precise name for their condition. This is important because an updated diagnosis can open doors to better-targeted treatments, clinical trials, and support resources. The symptoms originally associated with this condition included poor feeding from birth, difficulty coordinating sucking and swallowing, choking or aspiration during feeds, failure to thrive, and possible additional neurological problems. Treatment was primarily supportive, focusing on safe feeding strategies, nutritional support (sometimes through tube feeding), and management of any associated neurological issues. Families affected by this condition were typically cared for by a multidisciplinary team including neurologists, feeding specialists, and geneticists.

Key symptoms:

Difficulty sucking during feedingDifficulty swallowingChoking or gagging during feedsPoor weight gain or failure to thriveAspiration of food or liquid into the lungsAbnormal brain structures visible on imagingLow muscle toneDelayed motor developmentFeeding refusalRecurrent 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 basal ganglia anomalies.

View clinical trials →

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

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the OBSOLETE: Sucking/swallowing disorder associated with basal ganglia anomalies community →

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

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

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

Financial Resources

1 resources

TECENTRIQ

Genentech, Inc.

TECENTRIQ Patient Support (Genentech Access Solutions)

Patient Assistance
Manufacturer Program
Accepting applications

Travel Grants

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

Search all travel grants →NORD Financial Assistance ↗

Community

Open OBSOLETE: Sucking/swallowing disorder associated with basal ganglia anomaliesForum →

No community posts yet. Be the first to share your experience with OBSOLETE: Sucking/swallowing disorder associated with basal ganglia anomalies.

Start the conversation →

Latest news about OBSOLETE: Sucking/swallowing disorder associated with basal ganglia anomalies

No recent news articles for OBSOLETE: Sucking/swallowing disorder associated with basal ganglia anomalies.

Follow this condition to be notified when news becomes available.

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.Since this diagnosis is now obsolete, what is the current, updated name for my child's condition?,What did the brain MRI show about my child's basal ganglia, and what does it mean?,Should we pursue genetic testing to find a more specific cause?,What feeding strategies are safest for my child right now?,Will my child need a feeding tube, and if so, for how long?,What therapies are available to help improve my child's swallowing?,Are there any clinical trials or new treatments we should know about?

Common questions about OBSOLETE: Sucking/swallowing disorder associated with basal ganglia anomalies

What is OBSOLETE: Sucking/swallowing disorder associated with basal ganglia anomalies?

This entry, previously known as 'Sucking/swallowing disorder associated with basal ganglia anomalies,' is an obsolete (retired) disease classification in the Orphanet rare disease database. It was used to describe a condition in which newborns or infants had serious difficulty sucking and swallowing, linked to abnormalities in a part of the brain called the basal ganglia. The basal ganglia are deep brain structures that help control movement, coordination, and certain automatic functions like swallowing. When these structures do not develop properly or are damaged, basic feeding functions can

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

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

What treatment and support options exist for OBSOLETE: Sucking/swallowing disorder associated with basal ganglia anomalies?

1 patient support program are currently tracked on UniteRare for OBSOLETE: Sucking/swallowing disorder associated with basal ganglia anomalies. See the treatments and support programs sections for copay assistance, eligibility, and contact details.