Sandifer syndrome

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15Specialists8Treatment centers

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Overview

Sandifer syndrome is a rare condition that mainly affects babies and young children. It is closely linked to gastroesophageal reflux disease (GERD), which means stomach acid flows back up into the food pipe (esophagus), causing pain and irritation. In response to this discomfort, children with Sandifer syndrome make unusual, twisting movements of their head, neck, and sometimes their back. These movements can look a lot like seizures or a movement disorder, which often leads to confusion and delayed diagnosis. The condition is sometimes called Sandifer's syndrome. The most striking feature of Sandifer syndrome is the way children arch or twist their bodies — especially their neck and upper back — often right after eating. This is thought to be the child's way of trying to ease the pain caused by acid reflux. Other signs include vomiting, irritability, and feeding difficulties. Some children may also have iron-deficiency anemia if the reflux causes bleeding in the esophagus. The good news is that Sandifer syndrome is very treatable. When the underlying acid reflux is properly managed — through feeding changes, medications that reduce stomach acid, or in some cases surgery — the unusual movements usually go away completely. Most children do very well with treatment and have no lasting problems. Early and correct diagnosis is key, because children are sometimes unnecessarily treated for epilepsy or other neurological conditions before Sandifer syndrome is recognized.

Key symptoms:

Unusual twisting or arching of the neck and back, especially after eatingHead tilting or turning to one sideVomiting or spitting up frequentlyIrritability and crying, especially during or after feedingDifficulty feeding or refusing to eatWrithing or contorting body movements that look like seizuresBack archingPoor weight gain or slow growthHeartburn-like discomfort (in older children who can describe it)Iron-deficiency anemia in some cases

Clinical phenotype terms (13)— hover any for plain English
Abnormal head movementsHP:0002457Abnormal posturingHP:0002533Hiatus herniaHP:0002036HematemesisHP:0002248Decreased cervical spine mobilityHP:0004637Abnormal involuntary eye movementsHP:0012547EsophagitisHP:0100633Epigastric painHP:0410019Episodic vomitingHP:0002572
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Infantile

Begins in infancy, roughly 1 month to 2 years old

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Sandifer syndrome.

View clinical trials →

No actively recruiting trials found for Sandifer syndrome at this time.

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Specialists

15 foundView all specialists →
TT
Takahisa Tainaka
Specialist
1 Sandifer syndrome publication
WS
Wataru Sumida
Specialist
1 Sandifer syndrome publication
SM
Satoshi Makita
Specialist
1 Sandifer syndrome publication
DK
Daiki Kato
Specialist
1 Sandifer syndrome publication
HU
Hiroo Uchida
Specialist
1 Sandifer syndrome publication
HA
Hizuru Amano
Specialist
1 Sandifer syndrome publication
KY
Kazuki Yokota
Specialist
1 Sandifer syndrome publication
CS
Chiyoe Shirota
Specialist
1 Sandifer syndrome publication
AY
Akihiro Yasui
Specialist
1 Sandifer syndrome publication
YG
Yousuke Gohda
Specialist
1 Sandifer syndrome publication
TM
Takuya Maeda
Specialist
1 Sandifer syndrome publication
AH
Akinari Hinoki
Specialist
1 Sandifer syndrome publication
AS
Abhigan Babu Shrestha
Specialist
1 Sandifer syndrome publication
PR
Prateet Rijal
Specialist
1 Sandifer syndrome publication
US
Unnat Hamal Sapkota
Specialist
1 Sandifer syndrome publication

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 Sandifer syndrome.

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Community

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Latest news about Sandifer syndrome

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Caregiver Resources

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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.How certain are you that this is Sandifer syndrome and not epilepsy or another movement disorder?,What tests do you recommend to confirm the diagnosis and check for esophageal damage?,Which medication do you recommend for my child's acid reflux, and what are the possible side effects?,How long will my child need to take medication, and how will we know when it is safe to stop?,What feeding changes should I make at home, and are there foods I should avoid giving my child?,When should I expect to see the unusual movements improve after starting treatment?,At what point would you consider surgery, and what does that involve?

Common questions about Sandifer syndrome

What is Sandifer syndrome?

Sandifer syndrome is a rare condition that mainly affects babies and young children. It is closely linked to gastroesophageal reflux disease (GERD), which means stomach acid flows back up into the food pipe (esophagus), causing pain and irritation. In response to this discomfort, children with Sandifer syndrome make unusual, twisting movements of their head, neck, and sometimes their back. These movements can look a lot like seizures or a movement disorder, which often leads to confusion and delayed diagnosis. The condition is sometimes called Sandifer's syndrome. The most striking feature of

How is Sandifer syndrome inherited?

Sandifer syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Sandifer syndrome typically begin?

Typical onset of Sandifer syndrome is infantile. Age of onset can vary across affected individuals.

Which specialists treat Sandifer syndrome?

15 specialists and care centers treating Sandifer syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.