Travel Tips – Travelling with Epilepsy. Find out how the Carroll family conquered their fears to make frequent travelling possible. Travel is doable if you or a family member has Epilepsy. By Daniel Carroll.
In the big scheme of life, our time on this planet is short. Our family loves to travel, and we never take the privilege for granted, especially given the current situation with Covid-19. We endeavour to find fun and adventure in everything we do and ardently believe in taking less and giving more. Parenting a child with special needs provides a rare insight into what matters in life and the importance of surrounding ourselves with people who understand the unique journey.
Morgan, our first-born daughter, suffered a traumatic birth resulting in multiple disabilities. Her disabilities include Hydrocephalus, Spastic Diplegia Cerebral Palsy, Scoliosis, Autism, Epilepsy, and Intellectual Impairment. Morgan is also legally blind. Despite these conditions, Morgan is a fun-loving, friendly, talkative, adventurous individual who loves jumping on a plane, boat, car or basically anything that moves!
Perhaps it’s best to start at the beginning. Before she was formally diagnosed, we almost lost Morgan to Epilepsy in the year of 2008 while returning home from school on the bus. The Tonic-Clonic seizure lasted over seventy minutes. Within this time, she was rushed to a local hospital before medical staff informed they couldn’t do any more for her. Consequently, Morgan was airlifted to a major facility and placed in an induced coma and ventilated. After days in intensive care, she improved and spent three weeks in a hospital ward without uttering a word.
This ghastly, oxygen zapping seizure caused further damage to Morgan’s brain, but look at her now living life to the fullest, a jet setter indeed! Proving that travelling with epilepsy is doable. With years of lived experience, we adequately manage Morgan’s Epilepsy with anti-seizure medication. However, her patterns have changed over the years, and she certainly keeps us on our toes, especially while in foreign countries and travelling outside our comfort zone.
In this post, we would like to share our essential travel tips when travelling with the severe affliction that is Epilepsy.
Ask your doctor for a letter outlining your Epilepsy diagnosis and the type of seizures that are likely to occur, including recent history and hospital admissions. We keep a detailed Excel spreadsheet for this.
Organise an Epilepsy plan with your doctor. This should be carried by the epileptic person to ensure everyone knows what steps to take in the event of a seizure.
Travelling with a medical ID bracelet or an Epilepsy smartphone app is excellent for alerting medical professionals and emergency lines to your condition. Click HERE for more information.
When travelling with Epilepsy outside of Australia, organise your travel insurance BEFORE booking or paying for your holiday to avoid disappointment and loss of precious funds. Many travel insurance companies have strict pre-existing medical condition policies. Insurance is not an option – you MUST be prepared for everything. While it’s not compulsory, you would be very silly to travel without cover. Insurance is more expensive for those with pre-existing conditions, especially Epilepsy. Without it, the consequences can be disastrous as medical evacuation (if required) can cost tens of thousands of dollars.
Complete honesty is essential when going through the process as these companies will void your cover if you don’t tell them everything. We recently paid over $1000 for Morgan’s insurance because she had one hospital admission for Epilepsy in the previous twelve months. Most companies would not cover her even though we had used them previously.
A doctor’s letter documenting all medications is essential for airport customs clearance. If you require sharp needles, you also need to have this documented. Keep all your medicines in their original, labelled boxes. Morgan has never been stopped at customs for this purpose, but better to be safe than sorry. Click HERE for more information.
Depending on the frequency and severity of your seizures, airlines require you to fill in a medical clearance form before flying with Epilepsy. These forms are found on the airline’s website. You need to download the required form, complete the appropriate sections, and ask your doctor to fill in the medical parts. The doctor’s receptionist will send the completed form directly to the airline administration. HERE is an example from Jetstar.
Always expect the unexpected. For various reasons, travellers sometimes get stuck in countries longer than initially planned. Taking extra medications and prescriptions is a sure way to protect yourself as some countries might not have what you need.
Checked in baggage sometimes goes missing while travelling, so it’s imperative to carry your medications in your carry-on luggage – you may need it on board.
Once onboard the aircraft, alert the cabin manager and nearby passengers about your condition and tell them how they can help you if an emergency arises.
Taking medication can be an issue when travelling with time differences, so try and stay on schedule.
Triggers for seizures differ for everyone, such as stress, anxiety, heat, lack of sleep, menstrual cycles and so on. Do your best to avoid the triggers within your control.
Be prepared in the event of an Epileptic seizure requiring medical assistance: research doctors and hospitals in and around your destination. An online search or recommendation will help with finding relevant institutions and a doctor that speaks your language. Store these contacts on your phone before leaving as trying to find these at the crucial moment is time-consuming and nerve-wracking. Once at your destination, take the time to familiarise and introduce yourself to local medical professionals.
Most importantly, remember that fear is the thief of dreams.
Enjoy your holidays!
We are Daniel, Jodi, Morgan & Sydney from Noosa, Australia. We travel, we laugh, we cry and love while living life and blogging our wheelchair travel adventures with Morgan’s disabilities. We hope to encourage everyone in similar situations to believe that it is possible. We are currently building a wheelchair accessible Villa in Bali – Our happy place. Come follow us on our unique journey!
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