Living with Childhood disintegrative disorder
A rare developmental condition where a child loses skills like speech and social ability after at least two years of typical development.
Understanding Childhood disintegrative disorder
It begins before age three. Children lose behavioral and developmental skills in a dramatic way. Features include loss of speech, loss of bladder and bowel control, trouble with communication and social interaction, and repetitive autistic-like behaviors.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Loss of speech
- Loss of bladder control
- Loss of bowel control
- Trouble with social interaction
- Repetitive movements
- Anxiety
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes cause this condition, but it doesn't list specific genes.
Also known as: cdd - childhood disintegrative disorder; childhood disintegrative disease; dementia infantilis; disintegrative psychosis; heller syndrome; heller's syndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Childhood disintegrative disorder.
Explore research for Childhood disintegrative disorder
Explore actively recruiting Childhood disintegrative disorder studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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