Overview
Childhood-onset motor and cognitive regression syndrome with extrapyramidal movement disorder is a rare brain condition that causes children to lose skills they had already learned. 'Regression' means going backward — a child who could walk, talk, or think clearly may gradually lose those abilities over time. The disease also causes extrapyramidal movement problems, which means abnormal, involuntary movements such as stiffness, slow movements, tremors, or twisting postures that the child cannot control. These movement problems come from changes in the deep parts of the brain that normally help coordinate motion. The condition typically begins in childhood, after a period of normal or near-normal development. Parents often first notice that their child is falling more, losing words they used to know, or struggling in school in ways that seem to be getting worse rather than better. Over time, thinking and memory skills may also decline alongside the movement problems. There is currently no cure for this condition. Treatment focuses on managing symptoms, keeping the child as comfortable and functional as possible, and supporting the family. Physical therapy, occupational therapy, speech therapy, and medications to control abnormal movements or seizures are the main tools doctors use. Research into the underlying causes is ongoing, and some children may be eligible for clinical trials. Early diagnosis is important so that supportive care can begin as soon as possible.
Also known as:
Key symptoms:
Loss of previously learned skills such as walking or talkingSlow or stiff movementsInvoluntary twisting or abnormal postures (dystonia)Tremors or shakingDecline in thinking, memory, and learning abilityDifficulty with balance and coordinationSpeech problems or loss of speechMuscle stiffness or rigidityBehavioral or personality changesDifficulty swallowingSeizures in some casesFatigue and reduced energy
Clinical phenotype terms (33)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Childhood-onset motor and cognitive regression syndrome with extrapyramidal movement disorder.
View clinical trials →Clinical Trials
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Specialists
View all specialists →No specialists are currently listed for Childhood-onset motor and cognitive regression syndrome with extrapyramidal movement disorder.
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 Childhood-onset motor and cognitive regression syndrome with extrapyramidal movement disorder.
Community
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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 tests do you recommend to find the specific cause of my child's regression, and how long will results take?,Are there any treatments or clinical trials available that might slow the progression of this condition?,What therapies — physical, occupational, or speech — should my child start right away, and how often?,What warning signs should prompt me to bring my child to the emergency room?,How can I connect with a palliative care team to help plan for my child's comfort as the disease progresses?,Are there support groups or patient organizations that can connect us with other families going through the same experience?,Should other family members be tested, and what does this diagnosis mean for the risk to siblings or future children?
Common questions about Childhood-onset motor and cognitive regression syndrome with extrapyramidal movement disorder
What is Childhood-onset motor and cognitive regression syndrome with extrapyramidal movement disorder?
Childhood-onset motor and cognitive regression syndrome with extrapyramidal movement disorder is a rare brain condition that causes children to lose skills they had already learned. 'Regression' means going backward — a child who could walk, talk, or think clearly may gradually lose those abilities over time. The disease also causes extrapyramidal movement problems, which means abnormal, involuntary movements such as stiffness, slow movements, tremors, or twisting postures that the child cannot control. These movement problems come from changes in the deep parts of the brain that normally help
At what age does Childhood-onset motor and cognitive regression syndrome with extrapyramidal movement disorder typically begin?
Typical onset of Childhood-onset motor and cognitive regression syndrome with extrapyramidal movement disorder is childhood. Age of onset can vary across affected individuals.