Living with Seizures: Home Management Protocol

Evidence-based protocols for managing infant seizure disorders and preparing for seizure emergencies

Alisha Blevins, MSN, CPNP-PC, Pediatric Neurology NP
27 min read
Health
0-3 months3-6 months6-9 months9-12 months

Introduction

This protocol provides structured guidance for managing infant seizure disorders and preparing for potential seizure emergencies. Whether your baby just had their first seizure or has a diagnosed seizure disorder, these evidence-based protocols support safe home management and emergency preparedness.

⚠️ EMERGENCY NOTICE: If your baby is currently having a seizure, call 911 immediately. This guide is for preparation and ongoing management—not for active emergencies.

For active seizure emergencies: Seizure Emergency Response Guide

Learn the medical science: Seizures in Babies: What Parents Need to Know

How to Use This Guide

This guide serves two primary audiences:

If your baby just had their first seizure:

  • Start with "After a First Seizure: Next Steps Protocol"
  • Review "Emergency Preparedness Protocol"
  • Prepare documentation and monitoring systems

If your baby has a diagnosed seizure disorder:

  • Implement all protocols as applicable to your situation
  • Customize based on your neurologist's specific recommendations
  • Review regularly and update as your baby grows

All parents should:

  • Review emergency preparedness protocols proactively
  • Share seizure action plan with all caregivers
  • Keep this guide accessible for reference

After a First Seizure: Next Steps Protocol

Immediate Post-Seizure Period

What to expect:

  1. Emergency evaluation (ER or urgent care)

    • Physical and neurological examination
    • Laboratory tests (blood glucose, electrolytes, complete blood count)
    • Possible imaging (CT in emergency, MRI later if indicated)
    • Possible lumbar puncture if infection suspected

  2. Observation period

    • Hospital may observe for 4-24 hours depending on clinical situation
    • Monitoring for recurrent seizures
    • Ensuring baby returns to baseline

  3. Initial workup completion

    • May discharge with neurology follow-up scheduled
    • May require EEG (electroencephalogram) as outpatient or inpatient
    • Further testing determined by clinical presentation

Information to Gather Before Medical Appointments

Create a seizure event document including:

  1. Date and time of seizure
  2. Duration (exact timing if possible)
  3. Description of movements:
    • Which body parts involved
    • Type of movement (jerking, stiffening, limp)
    • Rhythmic or irregular
    • One side or both sides
  4. Level of awareness:
    • Eyes open or closed
    • Responsive or unresponsive
    • Eye position or deviation
  5. Before the seizure:
    • What baby was doing
    • Any triggers (fever, missed sleep, illness)
    • Any warning signs
  6. After the seizure:
    • How long to return to baseline
    • Sleepiness or confusion
    • Any weakness or abnormal movements

Additional information to compile:

  • Family history of seizures or epilepsy
  • Pregnancy and birth history
  • Developmental history and current milestones
  • Recent illnesses or medication changes
  • Video of seizure (if captured)

Questions to Ask Your Medical Team

About the seizure:

  1. What type of seizure did my baby have?
  2. What likely caused it?
  3. What tests are recommended?
  4. What is the risk of another seizure?

About treatment:

  1. Does my baby need medication now?
  2. If not now, under what circumstances would medication be started?
  3. What should I do if another seizure happens?
  4. Do I need rescue medication at home?

About follow-up:

  1. When should we see neurology?
  2. What monitoring is needed?
  3. What restrictions or precautions should we take?
  4. When should I call you vs. go to ER?

About prognosis:

  1. What is the likely long-term outlook?
  2. Will this affect development?
  3. Is this likely to be ongoing or a one-time event?

Preparing for Neurology Appointment

Before the appointment:

  1. Compile medical records:

    • ER visit notes
    • Laboratory results
    • Imaging reports
    • EEG results (if done)

  2. Prepare your seizure documentation

    • Written description
    • Video (if available)
    • Timeline of events

  3. List all current medications and supplements

    • Include dosages and frequency

  4. Write down your questions

    • Don't rely on memory during appointment

  5. Bring support person if possible

    • Extra set of ears for complex information
    • Help with note-taking

Emergency Preparedness Protocol

Basic Seizure Response Steps

⚠️ For detailed emergency guidance during an active seizure: Seizure Emergency Response Guide

Quick reference for seizure response:

  1. Stay calm and time the seizure

    • Note start time immediately
    • Track duration precisely

  2. Ensure safety

    • Place baby on side if possible
    • Move dangerous objects away
    • Do NOT restrain movements
    • Do NOT put anything in mouth

  3. Protect airway

    • Position on side to prevent choking
    • Clear area around face

  4. Observe and document

    • Mental note of movements, body parts involved, eye position
    • Video if second person available and safe to do so

  5. Call for help if needed (see criteria below)

When to Call 911

Call 911 immediately if:

  • Seizure lasts longer than 5 minutes
  • Multiple seizures without regaining consciousness between
  • First seizure ever
  • Difficulty breathing or turning blue
  • Seizure in water
  • Seizure with injury
  • Baby won't wake up after seizure
  • Any concern this is a medical emergency

When to Use Rescue Medication

If your neurologist has prescribed rescue medication (rectal diazepam or intranasal midazolam):

Use when:

  1. Seizure lasting longer than prescribed duration (typically 3-5 minutes, per your specific instructions)
  2. Cluster seizures as defined by your neurology team
  3. Any other specific scenarios outlined in your seizure action plan

After administering rescue medication:

  1. Call 911 if this is first time using rescue medication
  2. Call 911 if seizure doesn't stop within 5 minutes of administration
  3. Follow your specific seizure action plan
  4. Document medication given, time, and dose
  5. Contact neurology team after seizure resolves

Do NOT use rescue medication:

  • For typical brief seizures that self-resolve
  • More frequently than prescribed
  • Without proper training on administration

When to Contact Neurologist (Non-Emergency)

Call neurology office same day or next business day if:

  • Seizure occurred but resolved, baby back to baseline
  • Seizure was longer or different than usual pattern
  • Cluster of seizures (multiple in short period) but baby recovered
  • Concerns about medication side effects
  • Questions about seizure action plan

Emergency Contact Information Template

Keep readily accessible (refrigerator, diaper bag, caregiver sheet):

BABY'S NAME: _______________
DATE OF BIRTH: _______________

DIAGNOSIS: _______________

NEUROLOGIST:
Name: _______________
Office: _______________
After-hours: _______________

PEDIATRICIAN:
Name: _______________
Office: _______________
After-hours: _______________

RESCUE MEDICATION (if prescribed):
Medication: _______________
Dose: _______________
When to use: _______________

CALL 911 IF:
• Seizure lasts longer than ___ minutes
• [Other specific criteria from your action plan]

HOSPITAL PREFERENCE: _______________

Medication Management Protocol

Daily Medication Administration

Timing and consistency:

  1. Give at same time(s) every day

    • Set phone alarms
    • Integrate into consistent daily routines (wake-up, bedtime, mealtimes)
    • Maintain schedule within 30-60 minutes

  2. Prepare medication area

    • Designated clean space
    • Good lighting
    • Accurate dosing tools (syringe, not kitchen spoon)

  3. Administer medication

    • Check medication name and dose
    • Use calibrated syringe for liquid medications
    • Give with or without food per prescription instructions
    • Follow immediately with water or milk if appropriate

  4. Document administration

    • Check off on medication log
    • Note any difficulties (refused, spit out, vomited)

Medication Tracking System

Create a medication log including:

  • Date and time of each dose
  • Dose given
  • Any issues with administration
  • Any seizures that day
  • Any side effects observed

Options for tracking:

  • Paper log (template from neurologist)
  • Phone app designed for medication tracking
  • Spreadsheet
  • Calendar with checkmarks

Missed Dose Protocol

If you realize dose was missed:

  1. Check timing:

    • If less than 2 hours late: Give immediately
    • If 2-4 hours late: Contact pharmacist or neurology office for guidance
    • If more than 4 hours late or close to next dose: Call neurology office—do NOT double dose

  2. Document the missed dose

    • Note in medication log
    • Report to neurology team at next appointment or sooner if advised

  3. Never double dose without explicit instruction from medical team

Vomited Dose Protocol

If baby vomits within 30 minutes of medication:

  1. Assess vomit:

    • Can you see medication in vomit?
    • How much was vomited?

  2. Follow your specific redosing instructions from neurology team, typically:

    • If full vomit within 15 minutes: Give full dose again
    • If partial vomit or 15-30 minutes: May give half dose
    • If after 30 minutes: Do not redose

  3. When in doubt: Call neurology office or pharmacist

  4. Document:

    • Time medication given
    • Time of vomiting
    • Whether redosed
    • Report to neurology team

Refill Management

Prevent running out of medication:

  1. Request refill when 7-10 days remain

    • Set calendar reminder
    • Some pharmacies offer auto-refill

  2. Keep backup supply if possible

    • Especially important when traveling
    • Check expiration dates regularly

  3. Coordinate with pharmacy

    • Ensure they stock medication
    • Know their hours and refill processing time
    • Have backup pharmacy identified

  4. Prior authorizations

    • Start process early (insurance may require)
    • Work with neurology office if issues arise

Side Effect Monitoring

Watch for and document:

Common side effects (report at next appointment):

  • Drowsiness or increased sleep
  • Mild appetite changes
  • Mild behavioral changes
  • Unsteadiness when beginning to walk

Concerning side effects (contact neurology office):

  • Extreme drowsiness or difficulty waking
  • Significant appetite loss or refusal to eat
  • Rash
  • Significant behavioral changes
  • Developmental regression
  • Increased seizure frequency

Emergency side effects (call 911 or go to ER):

  • Difficulty breathing
  • Severe allergic reaction (swelling of face, lips, tongue)
  • Unresponsiveness
  • Severe rash with fever

Medication Safety

  1. Storage:

    • Store as directed (room temperature vs. refrigerated)
    • Keep out of reach of children
    • Protect from light if required
    • Check expiration dates

  2. Traveling:

    • Carry medication in original container
    • Pack extra doses in case of delays
    • Bring copy of prescription
    • Don't check medication in luggage—carry on only

  3. Disclosure:

    • Inform all healthcare providers of seizure medications
    • Bring medication list to all appointments
    • Wear medical ID bracelet if recommended

Safety Protocols by Environment

Sleep Safety

Nighttime protocols:

  1. Safe sleep environment:

    • Firm, flat mattress
    • No loose bedding, pillows, or toys in crib
    • Follow AAP safe sleep guidelines
    • Room-sharing recommended (baby in own crib in parents' room)

  2. Monitoring:

    • Video baby monitor with sound
    • Consider monitoring baby's position and breathing patterns
    • Some families use seizure detection devices (discuss with neurologist)
    • Check on baby periodically

  3. Positioning:

    • Place on back to sleep (AAP recommendation)
    • If seizure occurs during sleep, baby may end up in different position
    • Ensure crib is free of objects that could obstruct breathing

  4. Response plan:

    • Know how to respond if nighttime seizure occurs
    • Keep rescue medication (if prescribed) accessible
    • Have phone charged and nearby

Nap safety:

  • Same protocols as nighttime sleep
  • Maintain visual or monitor supervision

Bath Time Protocol

CRITICAL: Never leave baby alone in bath—seizure risk requires constant supervision

  1. Preparation:

    • Gather all supplies before starting bath
    • Fill tub with minimal water (2-3 inches maximum)
    • Test water temperature

  2. During bath:

    • Remain within arm's reach at all times
    • Maintain hand contact with baby
    • Keep bath brief (5-10 minutes)
    • Watch for any seizure warning signs if baby has recognizable pattern

  3. If seizure occurs in bath:

    • Support head immediately to keep face out of water
    • Call for help if someone else is home
    • Lift baby out of water as soon as safely possible
    • Follow seizure response protocol
    • Call 911

Alternative bathing methods:

  • Sponge baths
  • Shower with parent (holding baby securely)
  • Very shallow bath with constant hand support

Play and Floor Time Safety

Creating safe play environment:

  1. Floor surface:

    • Soft surface (carpet, foam mats, thick blanket)
    • Clear of hard or sharp objects
    • Away from furniture with hard edges

  2. Supervision:

    • Remain in same room
    • Visual contact at all times
    • Quick response distance

  3. Equipment considerations:

    • Avoid baby walkers (never recommended, especially with seizure disorder)
    • Minimize time in elevated seats or containers
    • Ensure safety straps on all equipment
    • Be present when baby is in high chair, bouncer, swing

  4. Environmental modifications:

    • Pad sharp furniture corners
    • Remove hard toys from immediate area during seizure-risk times
    • Create defined safe play zones

Feeding Safety

Bottle or breast feeding:

  1. Positioning:

    • Hold baby securely
    • Support head
    • Feed in calm, quiet environment

  2. Watch for signs:

    • Normal sucking and swallowing
    • Alertness and responsiveness
    • Any unusual movements or behaviors

  3. If seizure during feeding:

    • Remove bottle/stop breastfeeding immediately
    • Position to prevent aspiration
    • Follow seizure response protocol

Solid foods (6+ months):

  1. Supervision:

    • Never leave baby alone while eating
    • Maintain constant visual contact
    • Be prepared to respond to choking or seizure

  2. Food modifications:

    • Appropriate textures for age and development
    • Avoid choking hazards
    • Small, manageable portions

  3. Seating:

    • Use high chair with proper safety restraints
    • Ensure baby is upright and well-supported
    • Stay within arm's reach

Car Seat and Travel Safety

Car seat protocols:

  1. Installation:

    • Properly installed car seat appropriate for age/weight
    • Rear-facing per AAP guidelines
    • Tight installation, no excess movement

  2. Positioning:

    • Secure harness straps (snug, at or below shoulders for rear-facing)
    • Chest clip at armpit level
    • No thick coats or blankets under harness

  3. Monitoring during travel:

    • Use car seat mirror to view baby
    • Frequent checks on longer trips
    • Never leave baby alone in car
    • Consider having adult sit in back seat on longer trips

  4. If seizure occurs in car:

    • Pull over immediately when safe
    • Put car in park
    • Move to back seat if driving alone
    • Follow seizure response protocol
    • Call 911 if needed
    • Do not continue driving until baby recovered and safe to do so

Travel considerations:

  • Bring extra medication
  • Carry seizure action plan
  • Research nearest hospitals at destination
  • Bring medical records and neurologist contact information
  • Consider travel insurance

Developmental Stage Adaptations

As baby grows, update safety protocols:

Rolling (4-6 months):

  • Increased fall risk
  • Never leave on elevated surface
  • Expand safe floor space

Sitting (6-9 months):

  • Cushioned area for inevitable tumbles
  • Remove hard objects from vicinity
  • Supervised sitting practice

Crawling (7-10 months):

  • Expand baby-proofed area
  • Gate off stairs
  • Remove access to hazardous areas

Pulling to stand (9-12 months):

  • Pad hard furniture edges
  • Secure furniture to walls
  • Remove climbing hazards
  • Cushioned floor surfaces in standing practice areas

Cruising and walking (10-15 months):

  • Helmet consideration (discuss with neurologist if frequent falls during seizures)
  • Continued environmental padding
  • Stair gates top and bottom
  • Constant supervision in new skill practice

Seizure Monitoring and Documentation Protocol

What to Document

For every seizure, record:

  1. Date and time:

    • Exact start time
    • Duration (use timer or clock)
    • Time to return to baseline

  2. Seizure characteristics:

    • Type of movements (jerking, stiffening, limp)
    • Body parts involved (one side, both sides, specific limbs)
    • Eye position (straight ahead, deviated, rolling, closed)
    • Level of awareness (responsive, unresponsive, partially aware)
    • Color changes (pale, blue, flushed)

  3. Before the seizure:

    • Activity baby was doing
    • Possible triggers (missed sleep, illness, missed medication, fever)
    • Any warning signs or changes in behavior
    • Time since last medication dose

  4. After the seizure:

    • Postictal state (sleepy, confused, weak)
    • Duration of recovery period
    • Any focal weakness or abnormal movements
    • Return to normal behavior

  5. Interventions:

    • Rescue medication given (time, dose)
    • Emergency services called
    • Other actions taken

Video Documentation

How to video effectively:

  1. If safe to do so:

    • Do not prioritize video over baby's safety
    • Have second person video if possible
    • Keep phone charged and accessible

  2. What to capture:

    • Start video as early in seizure as possible
    • Film face and body
    • Capture entire seizure from start to finish if possible
    • Continue briefly into postictal period
    • Speak date and time onto video

  3. Video is valuable because:

    • Shows neurologist exact seizure characteristics
    • Captures details you may not remember
    • Helps differentiate seizure types
    • Tracks changes in seizure pattern over time

  4. Storage and sharing:

    • Save videos in organized folder (dated)
    • Upload to secure cloud storage
    • Share with neurology team (via patient portal or as directed)

Seizure Diary or Log

Tracking methods:

Option 1: Paper log

  • Notebook or printed template
  • Keep in accessible location
  • Bring to all neurology appointments

Option 2: Digital log

  • Seizure tracking apps
  • Spreadsheet
  • Notes app with date stamps

Option 3: Calendar

  • Mark each seizure on calendar
  • Note duration and characteristics

Information to track over time:

  • Seizure frequency (daily, weekly, monthly patterns)
  • Seizure duration trends
  • Time of day patterns
  • Potential triggers identified
  • Medication changes correlation
  • Illness correlation
  • Sleep pattern correlation
  • Developmental changes correlation

Pattern Recognition

Watch for patterns that may indicate:

Seizure triggers:

  • Time of day (morning, night, during sleep transitions)
  • Sleep deprivation
  • Illness or fever
  • Missed medications
  • Specific activities

Changes requiring medical attention:

  • Increasing seizure frequency
  • Longer seizure duration
  • New seizure types
  • Clustering (multiple seizures close together)
  • Incomplete recovery between seizures

Share patterns with neurology team:

  • Bring seizure log to every appointment
  • Report significant pattern changes promptly
  • Discuss potential trigger management

Seizure Recognition Protocol

Differentiating Seizures from Normal Movements

Common normal movements that can be mistaken for seizures:

Benign sleep myoclonus:

  • ✓ Jerking during sleep only
  • ✓ Stops immediately when baby wakes
  • ✓ No eye involvement
  • ✓ Very common in newborns

Jitteriness:

  • ✓ Fine, rapid trembling
  • ✓ Stops when you gently hold the limb
  • ✓ Often triggered by stimulation or handling
  • ✓ Common in newborns, especially if blood sugar issues

Startle reflex (Moro reflex):

  • ✓ Sudden flinging arms out, then drawing in
  • ✓ Triggered by loud noise or position change
  • ✓ Brief, immediate
  • ✓ Baby is aware and responsive
  • ✓ Normal primitive reflex

Shuddering attacks:

  • ✓ Rapid shivering/shuddering of head and shoulders
  • ✓ Baby is fully awake and aware
  • ✓ Lasts only seconds
  • ✓ No loss of awareness
  • ✓ Benign condition

Seizure Characteristics Checklist

More likely to be a seizure if:

  • Rhythmic, repetitive movements
  • Doesn't stop when you touch or hold limb
  • Eyes open with fixed gaze or deviation
  • Baby is unresponsive or altered awareness
  • Progresses or changes during episode
  • Followed by period of sleepiness or confusion (postictal)
  • Consistent pattern each time it happens
  • Lasts longer than a few seconds
  • Color change (pale, blue, flushed)
  • Breathing changes

More likely to be normal if:

  • Only during sleep or drowsiness
  • Stops with gentle touch or repositioning
  • Baby is awake and aware throughout
  • Not rhythmic or stereotyped
  • Very brief (1-2 seconds)
  • Triggered by obvious external stimulus
  • Inconsistent pattern

Know Your Baby's Seizure Pattern

If your baby has diagnosed epilepsy:

  1. Learn the typical characteristics:

    • How seizures usually start
    • Typical duration
    • Usual body parts involved
    • Expected postictal behavior

  2. Recognize variations:

    • New seizure types may emerge
    • Seizures may change as baby grows
    • Report new or different seizure types to neurologist

  3. Identify concerning changes:

    • Longer duration than usual
    • More frequent than usual
    • Different pattern or body parts involved
    • Incomplete recovery between seizures
    • New symptoms

When in Doubt

If you're unsure whether an event was a seizure:

  1. Video the event if it happens again
  2. Document detailed description
  3. Call neurology office for guidance
  4. Share video with medical team

Do not dismiss concerning movements - Better to check with medical team than miss seizure activity requiring treatment adjustment.

Care Coordination Protocol

Medical Team Communication

Your baby's medical team may include:

  • Primary pediatrician
  • Pediatric neurologist
  • Neurology nurse practitioner or physician assistant
  • EEG technicians
  • Pharmacist
  • Other specialists as needed

Establish clear communication:

  1. Designate primary contact (usually neurologist for seizure-related questions)

  2. Know how to reach team:

    • Office number
    • After-hours number
    • Patient portal access
    • When to call vs. message vs. go to ER

  3. Prepare for appointments:

    • Bring seizure log
    • Bring medication list
    • Bring videos if new seizures or changes
    • Write questions in advance
    • Bring support person for note-taking

  4. Share information between providers:

    • Ensure pediatrician has neurology notes
    • Inform all providers of medication changes
    • Coordinate care for other medical issues

Seizure Action Plan Distribution

Create written seizure action plan including:

  • Baby's name and diagnosis
  • Medication schedule
  • Typical seizure description
  • When to use rescue medication (if applicable)
  • When to call 911
  • Emergency contact information
  • Neurologist and pediatrician contact information

Share plan with:

  • All caregivers (grandparents, babysitters)
  • Daycare or childcare providers
  • Regular visitors
  • Anyone who may supervise baby

Keep copies:

  • Posted on refrigerator
  • In diaper bag
  • At daycare/caregiver's location
  • Digital copy on phone

Educating Caregivers

For anyone who cares for your baby:

  1. Review seizure action plan thoroughly

    • Read through together
    • Answer questions
    • Ensure understanding

  2. Show videos of baby's typical seizures (if available and comfortable sharing)

    • Helps caregivers recognize
    • Reduces panic if witnessed

  3. Demonstrate rescue medication administration (if applicable)

    • Practice with training device if available
    • Ensure proper technique
    • Confirm understanding of when to use

  4. Practice emergency scenarios:

    • What to do during seizure
    • When to call you
    • When to call 911
    • How to document

  5. Provide written materials:

    • Seizure action plan
    • Emergency contacts
    • Copy of medication schedule

Family Education

Siblings:

  • Age-appropriate explanation of baby's condition
  • What seizures look like
  • Reassurance that baby will be okay
  • How they can help (get parent, stay calm, be gentle)
  • Answer questions honestly and simply

Extended family:

  • Share information as comfortable
  • Provide seizure action plan if they spend time with baby
  • Address concerns and misconceptions
  • Establish boundaries about medical advice

Support system:

  • Identify who can help in emergency
  • Designate backup caregivers who are trained
  • Create support network for yourselves

Daily Living Adaptations

Routine Modifications

Medication integration:

  1. Build into existing routines:

    • Morning: With first feeding/diaper change
    • Evening: With bedtime routine
    • Midday (if needed): With lunch or specific activity

  2. Prepare medication station:

    • Designated drawer or cabinet
    • All supplies together (medication, syringes, log)
    • Good lighting
    • Clean surface

  3. Backup plans:

    • Medication in diaper bag for outings
    • Alarms on phone
    • Partner knows schedule if you're unavailable

Sleep schedule:

  1. Consistent sleep/wake times:

    • Regular bedtime and wake time
    • Appropriate naps for age
    • Sleep deprivation can trigger seizures in some babies

  2. Bedtime routine:

    • Calming, predictable sequence
    • Include evening medication if applicable
    • Safe sleep environment check

Feeding schedule:

  1. Regular meal times:

    • Appropriate for baby's age
    • Coordinate with medication timing
    • Note any dietary restrictions (ketogenic diet if prescribed)

  2. Special diet management (if applicable):

    • Ketogenic diet requires precise implementation
    • Work with nutritionist
    • Careful measurement and documentation

Developmental Support

Continue age-appropriate activities:

  1. Motor development:

    • Tummy time (supervised)
    • Reaching and grasping practice
    • Sitting, crawling, standing practice
    • Safe environment for skill development

  2. Language and social development:

    • Face-to-face interaction
    • Reading and singing
    • Serve-and-return exchanges
    • Social play

  3. Cognitive development:

    • Age-appropriate toys and activities
    • Exploration and discovery
    • Problem-solving opportunities

Monitor developmental progress:

  • Attend all well-child visits
  • Track milestones
  • Report concerns to pediatrician and neurologist
  • Early intervention services if delays noted
  • Some seizure medications or underlying conditions may affect development

Do not limit experiences unnecessarily:

  • Babies with seizure disorders can participate in typical activities with appropriate supervision
  • Modify for safety but encourage development
  • Discuss activity questions with neurologist

Parent Self-Care

Acknowledge the emotional impact:

  1. Common feelings:

    • Fear and anxiety
    • Hypervigilance
    • Grief for "typical" baby experience
    • Guilt (unwarranted but common)
    • Exhaustion
    • Isolation

  2. These feelings are normal

    • Seizure disorders are serious and scary
    • Uncertainty is difficult
    • Lifestyle changes are real

Self-care strategies:

  1. Accept help:

    • Let family and friends assist
    • Accept meal deliveries, household help, childcare
    • You don't have to do everything alone

  2. Take breaks:

    • Train reliable caregivers
    • Take time for yourself
    • Maintain relationship with partner
    • Sleep when possible

  3. Connect with support:

    • Epilepsy Foundation support groups
    • Online communities
    • Other parents of children with seizures
    • Professional counseling if helpful

  4. Maintain your health:

    • Attend your own medical appointments
    • Eat adequately
    • Move your body
    • Address your mental health

  5. Manage anxiety:

    • Preparation reduces panic (you're doing this by following protocols)
    • Focus on what you can control
    • Seek professional help if anxiety is overwhelming
    • Mindfulness or relaxation techniques

Partner and relationship care:

  • Communicate openly about fears and needs
  • Share responsibilities
  • Support each other's coping styles
  • Seek couples support if needed
  • Maintain connection beyond medical management

Sibling Considerations

Supporting siblings:

  1. Age-appropriate information:

    • Explain condition simply
    • Answer questions honestly
    • Reassure them baby will be okay
    • Let them know it's not their fault

  2. Include them appropriately:

    • Let them help in safe ways
    • Maintain their routines
    • Give them individual attention
    • Acknowledge their feelings

  3. Watch for signs of stress:

    • Behavior changes
    • Regression
    • Anxiety about baby
    • Acting out for attention

  4. Provide reassurance:

    • Parents are taking care of baby
    • They are loved and important
    • It's okay to have feelings about situation
    • Life will have normal moments too

When to Escalate Care

Immediate Emergency (Call 911)

Call 911 without delay if:

  • Seizure lasting longer than 5 minutes
  • Multiple seizures without regaining consciousness between
  • Difficulty breathing or turning blue during or after seizure
  • Seizure in water
  • Seizure with injury
  • Baby won't wake up after seizure
  • First seizure ever (if not yet diagnosed)
  • Rescue medication given and seizure not stopping
  • Any situation where you believe baby is in immediate danger

Urgent Neurology Contact (Same Day)

Call neurology office immediately if:

  • Seizure pattern changed significantly
  • Seizures increasing in frequency
  • Seizures lasting longer than usual
  • New seizure type observed
  • Cluster seizures (multiple in short period) even if baby recovered
  • Incomplete recovery between seizures
  • Concerns about medication side effects
  • Baby seems more lethargic or altered than usual
  • Developmental regression

Routine Neurology Contact (Next Business Day or at Scheduled Appointment)

Report at next appointment or call within a few days:

  • Typical seizure occurred, baby recovered normally
  • Minor medication administration issues
  • Questions about seizure management
  • Developmental milestone questions
  • Medication refill needs (if not automatic)

When to Contact Pediatrician

Call pediatrician if:

  • Fever or signs of infection
  • Vomiting or diarrhea (especially if affecting medication absorption)
  • Other medical concerns unrelated to seizures
  • Routine well-child care
  • Vaccine questions
  • Developmental concerns

Coordinate care:

  • Inform pediatrician of all seizure-related changes
  • Inform neurologist of illnesses or other medical issues

Red Flags Requiring Immediate Attention

Go to ER or call 911 if you observe:

  • Status epilepticus (continuous seizure >5 minutes or repeated seizures without recovery)
  • Respiratory distress or apnea
  • Severe allergic reaction to medication
  • Unresponsiveness beyond typical postictal period
  • Signs of serious infection with seizure (high fever, rash, stiff neck, extreme lethargy)
  • Head injury with seizure
  • Any medical emergency

Trust your judgment:

  • If something seems seriously wrong, seek immediate care
  • Better to be overcautious than delay needed treatment
  • You know your baby best

Key Takeaways

  • ✓ Preparation reduces panic – Proactive protocols enable calm, effective response during emergencies

  • ✓ Consistency is critical – Medication timing, documentation, and safety measures require daily diligence

  • ✓ Documentation drives care – Detailed seizure logs and videos guide treatment decisions and optimization

  • ✓ Safety modifications are essential – Bath, sleep, and play protocols prevent injury during seizures

  • ✓ Communication ensures coordinated care – Clear seizure action plans protect your baby across all caregiving situations

  • ✓ Pattern recognition informs treatment – Tracking frequency, triggers, and characteristics helps neurology team optimize management

  • ✓ Developmental support continues – Appropriate supervision allows babies with seizure disorders to develop skills safely

  • ✓ Parent well-being matters – Taking care of yourself enables you to provide optimal care for your baby

  • ✓ Trust your instincts – When in doubt about seizures, safety, or medication, contact your medical team

Understanding the Medical Science

This protocol is based on pediatric neurology clinical practice, epilepsy management guidelines, and seizure disorder research. Each recommendation supports safe home management and optimal outcomes for babies with seizure disorders.

Want to understand the neuroscience, seizure types, and medical details behind these protocols? Read the full clinical explanation: Seizures in Babies: What Parents Need to Know

Medical Review: Alisha Blevins, MSN, CPNP-PC, Pediatric Neurology NP Published: January 26, 2025 Last Updated: January 26, 2025

⚠️ Emergency Disclaimer: If your baby is currently having a seizure, call 911 immediately. This guide is for preparation and ongoing management, not for active medical emergencies.

Medical Disclaimer: This guide is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always follow your neurologist's specific recommendations for your baby's individual seizure disorder. When in doubt, contact your medical team or seek emergency care.

Tags:seizuresepilepsyemergency preparednessmedication managementsafety

About the Author

Alisha Blevins, MSN, CPNP-PC, Pediatric Neurology NP is a Pediatric Nurse Practitioner (MSN, CPNP-AC) with over 8 years of experience, specializing in developmental pediatrics and pediatric neurology. She is passionate about providing evidence-based guidance to parents navigating the challenges of raising young children.

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