Travelling with epilepsy: a planning guide for families

Travel is one of the simplest pleasures epilepsy occasionally complicates — and one of the easiest to do well with preparation. The principles are: enough medication for the trip plus a clear emergency reserve, a written doctor's letter, a rescue plan that works in a foreign hospital, and a daily routine that protects sleep. This guide pulls those threads together.

4–6 weeks before you travel

• Book a routine review with the epilepsy team if it has been more than 6 months since the last visit, especially for a long trip
• Check that your destination accepts your medication legally (some controlled substances, e.g. high-dose benzodiazepines, need import permits in countries such as Japan, the UAE and Singapore — your pharmacist or embassy can confirm)
• Confirm your routine vaccinations are up to date; some travel vaccines (yellow fever, Japanese encephalitis) are fine in epilepsy
• Get travel insurance that explicitly covers epilepsy — the cheapest generic policies often exclude pre-existing conditions
• If your child takes valproate or sodium-channel blockers and you're going to a hot country, plan extra fluids and electrolyte sachets
• Decide whether the trip needs a chaperone of two adults — useful for long-haul or rural destinations

Documents to carry

• A doctor's letter in English (and ideally the language of your destination) stating the diagnosis, medications with generic names and doses, and any rescue medication. Free templates from Epilepsy Action / Epilepsy Society work well
• A printed list of dosages with simple bullet times (some young children show pharmacists 'this is what I take' more easily than a typed letter)
• A copy of the most recent EEG/MRI report — useful if your child is admitted abroad and the local team has no history
• A photo of the medication packaging and a current prescription label (some airports ask for these for controlled medications)
• A medic-alert bracelet or necklace with the diagnosis and an emergency contact
• A small laminated card (in the local language) with: 'I have epilepsy. If I have a seizure, time it. Call an ambulance if it lasts more than 5 minutes. My emergency medication is in my bag.'

Medication supply

• Carry enough medication for the whole trip PLUS one extra week — flights are delayed, suitcases are lost
• Split the supply: half in hand luggage, half in the suitcase, plus a small reserve with a second adult
• Keep medication in the original labelled box; pharmacy labels with the patient's name make airport security straightforward
• Take a written prescription, not just the box — it makes an emergency refill possible
• Take the rescue medication (buccal midazolam, rectal diazepam) in hand luggage with the prescription label — never in checked luggage

Flying — practical tips

• Long-haul flights disrupt sleep and circadian rhythm — the main travel-related seizure risk. Plan medication times for the journey carefully (see below)
• Stay hydrated and walk every hour on long-haul flights
• Avoid alcohol and very high caffeine intake (older teens)
• Photosensitive children may struggle with strobing seatback screens — choose aisle or window seats away from bright displays
• Cabin air can dehydrate — bring a refillable water bottle through security
• If your child usually has seizures from sleep deprivation, an overnight flight is the highest-risk journey type; consider a daytime flight or planned recovery day

Time zones and medication timing

For trips that cross 1–3 time zones the simplest approach is: stick to the home clock for medication for the first 24 hours, then shift the schedule by 1–2 hours per day to the new time. For longer journeys (4+ time zones), a phased shift is essential to avoid a gap between doses.

• Westward travel — the day is longer. Add an extra small dose or move the evening dose earlier to fill the gap; never simply skip a dose
• Eastward travel — the day is shorter. Push the next dose slightly later until you reach the destination's normal schedule; do not double up
• When in doubt, send the schedule to your epilepsy team a week before the trip — they will mark up exact timings

Once you arrive

• Identify the nearest A&E / emergency department on the first day
• Find a pharmacy that stocks the relevant medications — generic names work internationally; brand names often do not
• Carry the doctor's letter and a small emergency kit (rescue medication + thermometer + paracetamol) every day, not just on excursions
• Keep your routine: sleep, meals, doses. Holiday excitement is the main reason children miss their medication abroad
• Heat and dehydration matter — in countries above 30°C, the rule of thumb is one extra litre of water per day for a child over 6 years, plus oral rehydration sachets in the bag

If a seizure happens away from home

• Standard first aid: side position, time it, soft head support, do not put anything in the mouth
• Give rescue medication if it is going to last more than 5 minutes
• Call an ambulance for a first-ever seizure abroad, a seizure that lasts >5 minutes despite rescue medication, repeated seizures, or any seizure with breathing difficulty
• Ring the embassy if you need help navigating a foreign hospital system
• Travel insurance hotline — many providers will translate, find a local clinic and pre-pay if needed