It's 11 PM. Something feels off. You're not sure if it's serious. The doctor's office is closed. What do you do?
This decision tree helps you sort through that decision quickly. It's organized by symptom category and tells you whether to manage at home, call the nurse line, head to urgent care, or go to the ER.
Important caveat: When in doubt, call. This tree gives general guidance but doesn't replace clinical judgment. If something feels seriously wrong, get help.
The four levels of response
LEVEL 1 — HANDLE AT HOME Document, monitor, plan to discuss at next visit LEVEL 2 — CALL THE NURSE LINE Within hours; get guidance on next step LEVEL 3 — GO TO URGENT CARE / SAME-DAY VISIT Within hours; need evaluation today LEVEL 4 — GO TO THE ER / CALL 911 Now; potentially serious or life-threatening
Universal red flags — go to ER immediately
If ANY of these are present, skip the rest of this tree and go to the ER or call 911:
- ☐ Difficulty breathing — significantly worse than baseline
- ☐ Chest pain or pressure (in older children/adults)
- ☐ Loss of consciousness or fainting
- ☐ Severe dehydration / inability to keep fluids down
- ☐ Severe bleeding that won't stop
- ☐ Signs of stroke (facial droop, arm weakness, slurred speech)
- ☐ Severe allergic reaction (swelling, difficulty breathing, hives spreading)
- ☐ Suicidal thoughts with intent or plan
- ☐ Severe abdominal pain
- ☐ Pale or gray / blue color to lips, fingertips, face
- ☐ Confusion or significant decrease in responsiveness
- ☐ Seizure (first time, or different from usual pattern)
For these, going via 911 or by car (whichever is faster) is appropriate. Bring the ER Quick-Reference Card.
By symptom category
Cardiac symptoms
NEW SHORTNESS OF BREATH ☐ Severe / can't speak in full sentences → ER NOW ☐ Significant / new at rest or with usual activity → ER ☐ With swelling in legs, face, or abdomen → ER ☐ Lying flat is uncomfortable / need extra pillows → ER (may indicate heart failure decompensation) ☐ Mild and improves with rest → Call cardiology nurse line tomorrow morning CHEST DISCOMFORT ☐ Crushing pressure radiating to arm/jaw → ER NOW (call 911) ☐ New, persistent (>20 minutes) → ER ☐ Brief, mild, with clear cause (cough, exertion) → Document; mention at next visit PALPITATIONS ☐ With fainting, chest pain, severe shortness of breath → ER ☐ Persistent (>30 minutes) and new → ER or urgent care ☐ Brief, no other symptoms → Document; call cardiology if recurring SUDDEN WEIGHT GAIN ☐ 3+ lb in 1-2 days → Call cardiology same day or next morning ☐ 5+ lb in a week → Call cardiology
Diabetes / metabolic symptoms
HYPOGLYCEMIA (LOW BLOOD SUGAR) ☐ Severe (<54 mg/dL or unconscious) → Glucagon if available; call 911 if not responsive → ER ☐ Moderate (55-69 mg/dL) with symptoms → Treat with fast carbs; recheck in 15 min → If recurring, call endocrinology ☐ Mild and resolved with treatment → Document; call endocrinology if pattern HYPERGLYCEMIA (HIGH BLOOD SUGAR) ☐ With nausea/vomiting/abdominal pain (possible DKA) → ER ☐ Significantly high (>400 mg/dL) with no clear cause → Call endocrinology; possible ER ☐ Mildly elevated, expected (after meal, illness) → Document; manage per usual sick-day rules KETONES POSITIVE ☐ Positive ketones with vomiting → ER (DKA risk) ☐ Positive ketones without vomiting → Call endocrinology UNABLE TO KEEP DOWN INSULIN-DEPENDENT NUTRITION ☐ Vomiting >24 hours, can't keep liquids down → ER (dehydration risk, glucose management challenge)
Vision-related
SUDDEN VISION CHANGE ☐ Sudden complete loss of vision → ER (retinal detachment, stroke) ☐ Sudden new floaters with light flashes → Call ophthalmology same day; possible ER ☐ Sudden blurring or dimming → Urgent care or same-day ophthalmology ☐ Gradual change over weeks/months → Routine ophthalmology appointment EYE PAIN / REDNESS ☐ Severe pain → ER or urgent care ☐ Trauma to the eye → ER ☐ Mild irritation → Document; monitor; call ophthalmology if persists
Respiratory symptoms
WORSENING ASTHMA / WHEEZING ☐ Severe — can't speak, blue lips, exhausted → ER (call 911) ☐ Moderate, not responding to inhaler → Urgent care or ER ☐ Mild, responsive to inhaler → Document; call pulmonology if pattern PNEUMONIA-LIKE SYMPTOMS ☐ High fever + cough + difficulty breathing → ER or urgent care ☐ Cough + fever, can still breathe okay → Urgent care or call PCP same day ☐ Cough alone, no fever, no shortness of breath → Manage at home; call PCP if persists CPAP NOT WORKING / BREATHING TROUBLE AT NIGHT ☐ Severe night-time breathing difficulty → ER ☐ CPAP malfunctioning, severe symptoms next day → Call sleep medicine same day ☐ CPAP malfunctioning, manageable → Document; troubleshoot per manual; call sleep medicine
Acute illness (fever, infection)
HIGH FEVER ☐ <3 months old with fever → ER ☐ Fever in patient with cardiac involvement, lethargy → Urgent care or call PCP same day ☐ Fever 102-104°F + significantly ill → Urgent care or call PCP ☐ Mild fever with normal energy → Manage at home; document GASTRO ILLNESS (vomiting, diarrhea) ☐ With diabetic patient, can't keep down liquids → ER ☐ With cardiac patient, signs of dehydration → Urgent care ☐ Mild, drinking okay → Manage at home; sick-day rules for diabetes URINARY TRACT INFECTION SYMPTOMS ☐ Fever + back pain (kidney involvement) → ER or urgent care ☐ Burning, frequency, no fever → Same-day urgent care or PCP ABDOMINAL PAIN ☐ Severe, persistent, with vomiting → ER ☐ With high triglycerides history (pancreatitis risk) → ER ☐ Moderate, manageable → Call PCP same day or next
Mental health emergencies
SUICIDAL THOUGHTS WITH INTENT → Crisis line NOW • 988 (US — call or text) • Samaritans 116 123 (UK) • Crisis Text Line: text HOME to 741741 → ER if person is unwilling/unable to call → Don't leave the person alone PANIC ATTACK ☐ First-ever, severe, mimics cardiac symptoms → ER (rule out cardiac) ☐ Recurring, known pattern → Use coping plan; call therapist next day DEPRESSIVE CRISIS / WITHDRAWAL ☐ Person not eating, not getting out of bed days → Call crisis line, mental health provider ☐ Severe distress without imminent risk → Call mental health provider next day ANY UNUSUAL MENTAL STATE ☐ Confusion, hallucinations, severe agitation → ER (could be medical, psychiatric, or both)
Other situations
EQUIPMENT MALFUNCTION CPAP / BiPAP not working → Document; call sleep medicine next business day → If breathing severely affected → urgent care Hearing aid / cochlear implant not working → Document; troubleshoot; call audiology Insulin pump malfunction → Switch to backup insulin (pen/syringe) → Call endocrinology CGM not working → Switch to fingerstick glucose → Call endocrinology MEDICATION ISSUES Missed dose → Take when remembered if close to scheduled time → Skip if too close to next dose → Call pharmacy or PCP for guidance Took double dose → Call poison control (1-800-222-1222 in US) → Or 111 (UK NHS) → Or pharmacist Severe side effect → ER if respiratory, cardiac, neurological → Otherwise call PCP or pharmacy NEW MEDICATION REACTION Mild rash, no breathing issues → Stop the medication; call PCP/prescriber Anaphylaxis (swelling, breathing trouble, hives) → Use EpiPen if available → Call 911
Decision tree, simplified version
For a quick sanity check:
Is the person in immediate danger?
│
┌─────┴─────┐
▼ ▼
YES NO
│ │
CALL 911 │
▼
Severe new symptom?
(breathing, pain, mental status)
│
┌─────┴─────┐
▼ ▼
YES NO
│ │
GO TO ER │
▼
Significantly worse than baseline?
│
┌─────┴─────┐
▼ ▼
YES NO
│ │
CALL NURSE │
LINE OR ▼
URGENT CARE Manageable / known
pattern / mild?
│
┌─────┴─────┐
▼ ▼
YES NO
│ │
HANDLE AT Call PCP
HOME, monitor next business
dayPhone numbers to have ready
Pre-populate these and post on refrigerator, save in phone:
═══════════════════════════════════════════════════════════════ KEY NUMBERS — POST WHERE FAMILY CAN FIND ═══════════════════════════════════════════════════════════════ EMERGENCIES — 911 (US) / 999 (UK) CRISIS LINES: • 988 (US suicide & crisis lifeline) • Samaritans 116 123 (UK) • Text HOME to 741741 (US/UK/Canada Crisis Text Line) POISON CONTROL: • 1-800-222-1222 (US) • 111 (UK NHS) PRIMARY CARE / PEDIATRICIAN: ____________________________ After-hours nurse line: ____________________________ CARDIOLOGY: ____________________________ After-hours cardiology: ____________________________ ENDOCRINOLOGY: ____________________________ OPHTHALMOLOGY: ____________________________ AUDIOLOGY: ____________________________ GENETICS: ____________________________ CENTER OF EXCELLENCE: ____________________________ PHARMACY (24-hour): ____________________________ NEAREST CHILDREN'S ER: ____________________________ Address: ________________________________________________ NEAREST ADULT ER: ____________________________ Address: ________________________________________________ TRUSTED FAMILY/FRIEND HELP: ____________________________ ____________________________ ____________________________ ═══════════════════════════════════════════════════════════════
What to bring when you go
If you're going to the ER or urgent care:
- ☐ ER Quick-Reference Card filled in
- ☐ Care binder
- ☐ Current medication list
- ☐ Insurance card
- ☐ Phone charger
- ☐ Snacks and water
- ☐ Comfort item if it's a child
After the event
Whether you handled it at home, called the nurse, went to urgent care, or went to the ER:
Document
- What happened
- When
- What you did
- What the outcome was
- What you'd do differently
Communicate
- Update the primary care team if not already informed
- Update the relevant specialist
- Update the care binder
Reflect
- Was the response appropriate?
- Are there changes to home routines that would prevent recurrence?
- Are there equipment, medications, or training that would help next time?
Plan
- Bring up with the medical team at next visit
- Update the after-hours plan based on what you learned
- Address any underlying issue that contributed
When you're not sure
Default to calling. Most providers have a 24-hour nurse line or on-call physician for their patients. They'd rather hear from you than have you wait if something is serious.
Specifically when calling, share:
- "This is the parent / patient with Alström Syndrome"
- The specific symptom or concern
- When it started
- What you've already tried
- What you're worried about
- Your callback number
The nurse will help you triage to the right level of care.
Frequently Asked Questions
Should I call my specialist or go to ER first?
For severe symptoms, ER first; the ER can call the specialist. For moderate symptoms, calling the specialist's nurse line first lets them advise on whether ER is needed. For mild concerns, the nurse line is usually enough.
What if I'm overreacting?
Better to call and be told it can wait than not call and miss something. Medical teams expect to hear from families with rare conditions; they'd rather you check in.
What if it's the weekend?
Most major specialty offices have on-call coverage. Use the after-hours nurse line. For ER-level concerns, the ER works 24/7.
What about telehealth?
Some after-hours telehealth services exist (Teladoc, MDLIVE, hospital-affiliated services). They're useful for moderate concerns but can't replace ER for severe cases.
What if our specialists are far away?
Local urgent care or ER for acute issues; the local team can consult with your specialists. For non-acute matters, telehealth and phone consults work.
Related reading
- ER Quick-Reference Card
- First Hospital Stay Survival Guide
- Care Binder Template
- Mental Health Safety Plan
This decision tree is for informational purposes only and is not a substitute for medical judgment. When in doubt, call the nurse line or go to the ER.