An emergency medical summary is different from the general SETD5 Syndrome handouts on this site. Those explain the condition. This is about your individual child -- their specific medications, allergies, communication needs, and what to do in a crisis. It's designed for ER doctors, paramedics, substitute caregivers, and school nurses who are meeting your child for the first time.
What to Include
Identification
- Full name and date of birth
- Current photo
- Diagnosis (SETD5 Syndrome -- rare genetic neurodevelopmental disorder)
- One-line functional summary (e.g. "nonverbal, uses AAC device")
Emergency Contacts
- Parent/guardian 1 (name, phone)
- Parent/guardian 2 (name, phone)
- Primary care physician (name, phone)
- Key specialist (e.g. neurologist) (name, phone)
- Preferred hospital
Allergies & Medications
- All known allergies (meds, food, latex)
- Current medications with dosages
- Medications to avoid (if any)
- Seizure protocol if applicable
Baseline Status
- What is "normal" for this person
- Known cardiac issues
- Known medical triggers
- Behavioral baseline
How They Communicate
- Method (verbal, AAC, gestures, signs)
- How to tell if they are in pain
- What comforts them
- What escalates their distress
In Emergency Settings
- Behavioral notes (e.g. "may become agitated in loud environments")
- Sensory sensitivities
- What helps in unfamiliar situations
- How to keep them safe and calm
Protect Your Privacy
The emergency summary should be strictly actionable. Leave off:
- Social Security numbers or insurance policy numbers -- privacy risk if document is lost
- Detailed genetic information beyond the diagnosis name
- School or work details
- Lengthy medical history -- only what is actionable right now
Existing Templates You Can Use
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1
AAP/ACEP Emergency Information Form
The most widely recognized emergency form for children with special healthcare needs. Two pages, designed to be filled out with your doctor. Available through healthychildren.org.
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2
Cambridge Rare Disease Network "This is Me" Passport
Designed specifically for rare conditions. Concise, printable, easy to update. Available at camraredisease.org.
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3
Global Genes "Building a Care Notebook"
A broader toolkit for organizing all medical records, not just the emergency page. Available at globalgenes.org.
Tips for Using Your Summary
- Keep a copy in your car, your child's backpack, and with every caregiver
- Save a digital copy on your phone (photo or PDF)
- Update every 6 months or when medications change
- Ask your child's doctor to review and co-sign annually
- Consider a MedicAlert bracelet that references the document
The most useful emergency summary is the one that's actually with you when you need it. Print several copies. Keep one in the glove box, one in the school file, and one with anyone who watches your child.
Coming Soon: SETD5 Syndrome Emergency Summary Builder
We are working on an interactive emergency summary builder designed specifically for SETD5 Syndrome families -- similar to our Medical Appointment Handout Builder and School Meeting Handout Builder. It will pre-populate with SETD5-relevant fields and generate a printable one-page summary. Check back soon.