Living with Early-infantile DEE
A brain condition in babies with seizures starting in the first three months of life and ongoing problems with brain function.
Understanding Early-infantile DEE
DEE stands for developmental and epileptic encephalopathy. Brain function gets worse over time. A brain wave test (EEG) shows a pattern of low activity alternating with bursts of high, spiky activity.
Signs & symptoms
GARD doesn't list specific symptoms for this condition separately, but the summary describes these features:
- Recurring seizures in the first three months of life
- Progressive problems with brain function
- Abnormal pattern on EEG (brain wave test)
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, genetic specialists and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Epilepsy Foundation
- 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 Epilepsy Foundation
- 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 a person's genes cause this condition. It doesn't list a specific gene.
Also known as: early infantile epileptic encephalopathy; early infantile epileptic encephalopathy with burst-suppression; early infantile epileptic encephalopathy with suppression bursts; early infantile epileptic encephalopathy with suppression-bursts; early myoclonic encephalopathy; early myoclonic encephalopathy with suppression-bursts
Patient organizations
- Epilepsy FoundationEpilepsy · United States
Broader rare-disease groups
- 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 Early-infantile DEE.
Explore research for Early-infantile DEE
Explore actively recruiting Early-infantile DEE studies with HealthSpark.
Find actively recruiting studies for Early-infantile DEE with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Early-infantile DEE studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Early-infantile DEE
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Early-infantile DEE experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.