Overview
This entry in the Orphanet database is labeled as 'OBSOLETE,' which means it is no longer considered a valid or active disease classification. Originally, this term referred to difficulties with sucking and swallowing in newborns that were not caused by Pierre Robin syndrome (a condition involving a small jaw, a tongue that falls back in the throat, and sometimes a cleft palate). Sucking and swallowing problems in newborns can arise from many different causes, including neurological conditions, muscle disorders, structural abnormalities of the mouth or throat, prematurity, or other genetic syndromes. Because this classification has been retired, patients and families who were previously given this diagnosis should work with their medical team to determine the specific underlying cause of the feeding difficulties. A more precise diagnosis will help guide appropriate treatment and follow-up care. Feeding difficulties in infants can range from mild to severe and may require specialized support such as modified feeding techniques, speech-language therapy focused on swallowing, or in some cases tube feeding. If your child has been diagnosed with this condition, it is important to seek an updated evaluation from a specialist who can identify the root cause and recommend the best management plan.
Key symptoms:
Difficulty sucking during breastfeeding or bottle feedingTrouble swallowing milk or formulaChoking or gagging during feedsPoor weight gain or failure to thriveFrequent spitting up or vomitingProlonged feeding timesNasal regurgitation of milkBreathing difficulties during feedingWeak or uncoordinated suckDehydration signs such as fewer wet diapers
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Sucking/swallowing disorder not related with Pierre Robin syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for OBSOLETE: Sucking/swallowing disorder not related with Pierre Robin syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Sucking/swallowing disorder not related with Pierre Robin 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: Sucking/swallowing disorder not related with Pierre Robin syndrome.
Community
No community posts yet. Be the first to share your experience with OBSOLETE: Sucking/swallowing disorder not related with Pierre Robin syndrome.
Start the conversation →Latest news about OBSOLETE: Sucking/swallowing disorder not related with Pierre Robin syndrome
No recent news articles for OBSOLETE: Sucking/swallowing disorder not related with Pierre Robin syndrome.
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.What is the specific underlying cause of my baby's feeding difficulties?,Should my baby have a swallow study or other specialized testing?,Is my baby getting enough nutrition, or do we need supplemental feeding?,Should we see a speech-language pathologist who specializes in infant feeding?,Are there any genetic tests that should be done to look for an underlying syndrome?,What are the warning signs that would mean I should go to the emergency room?,What is the expected timeline for improvement with therapy?
Common questions about OBSOLETE: Sucking/swallowing disorder not related with Pierre Robin syndrome
What is OBSOLETE: Sucking/swallowing disorder not related with Pierre Robin syndrome?
This entry in the Orphanet database is labeled as 'OBSOLETE,' which means it is no longer considered a valid or active disease classification. Originally, this term referred to difficulties with sucking and swallowing in newborns that were not caused by Pierre Robin syndrome (a condition involving a small jaw, a tongue that falls back in the throat, and sometimes a cleft palate). Sucking and swallowing problems in newborns can arise from many different causes, including neurological conditions, muscle disorders, structural abnormalities of the mouth or throat, prematurity, or other genetic syn
At what age does OBSOLETE: Sucking/swallowing disorder not related with Pierre Robin syndrome typically begin?
Typical onset of OBSOLETE: Sucking/swallowing disorder not related with Pierre Robin syndrome is neonatal. Age of onset can vary across affected individuals.