OVERVIEW
EPILEPSY AND TRAVEL
Having a child with epilepsy can feel very daunting, and can make the idea of going out and about feel quite scary. However having an epilepsy diagnosis should not usually prevent kids or adults from traveling by air.
As parents to a child with epilepsy we know how hard it is, and appreciate the need for taking additional precautions when leaving the house. We also think very carefully about potential locations before we travel.
However, as our consultant said to us, the epilepsy diagnosis itself should not stop you from having new adventures locally or abroad. With proper preparation you can have a stress-free travel experience, and if the worst does happen and your child has a seizure abroad then you simply need to do what you would do if you were at home (as scary as that sounds).
PREPARATION FOR TRAVELLING WITH EPILEPSY
Before you go, the Epilepsy Society advise that you check with the airline company you’ll be traveling with about access to medical services. Most cabin crew are trained in advanced first aid which includes how to cope if a passenger experiences a seizure on board but if you are worried or are planning a long haul flight you should definitely check in with them first.
It is important to consider what the primary triggers for your child's seizures are. Are they triggered by tiredness, dehydration, excitement, fever, anxiety or a build up of multiple factors. It is important to put a plan in place to reduce these potential triggers as much as possible during the travelling period, and throughout the trip is possible.
With sleep (or lack of) a big worry for us, we make sure to book flight times that allow us to follow our bedtime routine as best as possible, including aiming for 10 hours sleep each night. Melatonin can be very helpful for this when travelling so check with your consultant or GP if this is an option that is open to your child.
VACCINES AND EPILEPSY
While most vaccines are safe for people with epilepsy, some anti-malaria medicines should be avoided. Public Health England has published the following advice on anti-malaria medicine for people with epilepsy:
- Chloroquine: unsuitable for people with epilepsy
- Mefloquine: unsuitable for people with epilepsy
- Atovaquone/proguanil: can be used by people with epilepsy
- Doxycycline: Can be used, but the way this medicine works may be affected by phenytoin, carbamazepine and barbiturates. If you take one of these medicines your doctor might recommend a different anti-malaria medicine, or they might increase the dose of doxycycline.
You can find more information about travel vaccinations and anti–malaria medicine on the NHS website.
FURTHER INFORMATION
HAVING A SEIZURE ABROAD
Every epilepsy parent worries about their child having a breakthrough seizure, particularly if they are abroad, and unfortunately this did happen to us on a week trip to Sicily. It was a scary as you might expect, but we got through it as a family - these are the things that helped us at the time.
WHAT HELPED US COPE WITH A SEIZURE ABROAD
We had made a point of writing down the address of our accommodation on some paper and had kept it to hand in an easy to reach place. When we had to call for an ambulance in the early hours of the morning, at least we were confident we were able to give them the right location.
Before we left England I had looked up the international dialling code for an ambulance in Europe - and was able to recall this in the moment for which I was grateful. This meant that I was able to speak to an operator that spoke passable english and was able to understand the situation. Each country also has its own direct dial for an ambulance, but I didnt know what it was for Sicily. Now I always check this for each country too.
When you are abroad it is easy for the routine of home to be forgotten, and things are often mislaid or put down in random places. To mitigate this we had found a place in the house for his emergency medicine bag when we arrived, and we made sure we put it back there each day when we came back to the apartment. Thankfully this meant when the emergency occurred there was no scrabbling around trying to find it.
We had taken out specialist travel insurance cover that explicity included epilepsy and seizures abroad. While this cost us more, at least we knew that our bills would be covered and I wasnt too terrified about the bill I was potentially going to be given at the hospital when we were hopping in the ambulance.
It turns out that at the time of our trip to Sicily and Italy emergency care (including transport by ambulance) was free for all children, including foreign visitors. So when we were discharged I was not given a bill at all - a fact that I didnt find out until I asked if they accepted mastercard!
SPECIAL ASSISTANCE
Although not directly linked to the seizure itself, when it came time to fly home our son was still feeling unwell, so I was pleased that we had already booked the support of special assistance for the flight back to London. The team were absolutely brilliant and the use of the wheelchair / transport buggy in both the Sicilian and London airports was a lifesaver.
For more information on booking special assistance for your flight and the different ways it can help make your journey easier visit our dedicated Special Assistance for Family Travel Page.
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Extract from the Epilepsy Action website
TRAVEL ADVICE FOR MANAGING YOUR EPILEPSY DURING TRAVEL
1. Carry your medicine in your hand luggage
Carry your medicine in your hand luggage with a copy of your prescription (and your letter from the doctor if you have one). Keep the medicine in its original packaging. It’s also a good idea to pack a spare supply in your hold luggage, along with another copy of your prescription, in case you lose your hand luggage.
At the time of writing, UK airport hand luggage restrictions allow you to carry essential medicine in your hand luggage, including liquid medicine. You will need to show airport staff evidence that the medicine has been prescribed for you, such as a copy of your prescription.
2. Keep your medicine cool if needed
Some epilepsy medicines need to be kept in a cool dry place. You could use a thermos flask, an insulated pouch or cool bag with an ice pack. Your pharmacist can also give you advice about storing your medicine while you are travelling and while you are away.
3. Consider wearing identity jewellery or carrying an epilepsy ID card
Wearing identity jewellery or carrying an epilepsy ID card will let people know what is happening if you have a seizure while you are away. Epilepsy Action has details of companies that supply identity jewellery. You can order an epilepsy ID card free of charge by contacting Epilepsy Action.
4. If you often have seizures and are travelling by plane, consider telling the airline about your epilepsy
If you think you might have a seizure on the plane, it can be helpful to tell the airline about your epilepsy. That way, they will know what is happening if you have a seizure, and will be able to help you. Each airline will have different ways to get in touch in advance, or you may prefer to mention it to the cabin staff when you board the plane.
5. Tell airport security staff if you have a vagus nerve stimulation (VNS) device
Airport security scanners and metal detectors should not cause problems with your VNS. However, the makers of VNS say that to be safe, you should walk through airport scanners at a steady pace, not linger in the area and try to stay at least 40 centimetres away from the equipment. If this is not possible, you could tell the security staff about your VNS and ask for a pat down check instead. Airport staff should avoid using a handheld metal detector directly over your VNS.
6. Set a reminder to take your epilepsy medicines at your usual time
If you forget to take your epilepsy medicine, this could make you more likely to have a seizure
WHAT IF MY CHILD NEEDS MORE EPILEPSY MEDICATION WHEN WE ARE ABROAD
If you run out of your prescription medicine while you’re away, contact your travel insurance company. They may be able to help get your prescription replaced. If they cannot help, speak to a pharmacist in the country you’re visiting.
You may need to pay for a prescription from a local doctor. If you have a GHIC care (apply here) or EHIC card and are in one of the countries where it is valid, you should pay the same as people who live there. Make sure your prescription is from a state-approved doctor.
Travel Health Pro have more information on medicines and traveling.
HELPFUL RESOURCES
The Epilepsy Society has a confidential helpline. It offers parents and carers emotional support, information, and time to talk through your feelings.
A very helpful guide to travelling from the charity Young Epilepsy - Travelling with a Child with Epilepsy (pdf)
Some great information from the Epilepsy Society in their Travel and Holidays Factsheet (pdf)
General Information on Epilepsy and Autism from the National Autistic Society
From Epilepsy Action - a simple epilepsy identity card with space for emergency contact.