Travelling Well with Epilepsy

Travelling with children with epilepsy has it’s challenges. Eleven year old Lily’s mum, Jen shares their experiences of venturing from their hometown of Saratoga Springs, Utah and her tips for travelling well with epilepsy.

My daughter Lily is 11 years old. She was diagnosed with epilepsy when she was 3. We were determined from the beginning not to let epilepsy get in the way of doing things that would enrich her life but before we travel we do discuss the trips in depth to let her know what to expect.

The key during trips is to keep her schedule as close to normal as possible. We give Lily her medications at the same time each day, we ensure she has plenty of sleep and a healthy diet. If Lily does not get enough sleep, she is at greater risk of seizures. When she eats too much sugar, the same thing occurs.

When we visit family, we generally need to teach them about epilepsy. Lily can do almost anything other kids can do, but we remain cautious. She must always wear a helmet when biking or riding her skateboard (as should anyone) and we watch her closely when she swims.

Lily and I have taken several trips. We've travelled by car and by plane. We’ve gone to Disneyland, Las Vegas and California for a beach vacation (although I’m a nervous wreck when she’s near the ocean. I remain ultra alert and by her side when playing in the ocean. We stay near the water’s edge and do not risk being caught in a current). We also flew to New York to visit family and have travelled by plane to visit Lily’s daddy in Arizona. We have also been on a road trip to Denver, Colorado via car and have driven to Phoenix as well.

Preparations

We always have a copy of her prescriptions, diagnosis and symptoms while travelling. I look up the nearest hospital and the route on Google Maps and make sure our destination is never more than 10 miles from a hospital.

Our planning includes having anything on hand that we may need – Ibuprofen if she seizes (she gets a terrible migraine following her seizures), anything to help her be more comfortable such as her own pillow, her own blanket, cold packs, bucket for vomit, emergency meds (suppository to stop seizures). We let her doctor know we are travelling – she will call us back should we have questions or need guidance. I have written up a very detailed document about Lily’s condition in case we need to visit an emergency room.

Flying

The only problems Lily has experienced when flying have been gastrointestinal issues and terrible headaches. We’ve not experienced any seizures on a plane (thank goodness.)

Travelling by Car

We tend to travel mostly by car because even though there are stretches of road with no hospitals, we tend to feel more in control. We always take the routes that are nearest civilization. We can stop when needed, rest, eat whenever, etc. and we are able to stop to use the bathroom any time also. We can carry plenty of water (it’s important she stay hydrated) and healthy food.

If we need to stop at any time we do. My mum, Lily and I were travelling once from Phoenix to Utah by car. We got two hours down the road and were so tired, we stopped at a hotel only two hours out during an 11 hour drive.

When we travel it’s imperative that we have a good time and we remain flexible. So we stop to rest, we stop to see the sights, we stop to sleep, we stop to eat – whatever she needs to keep her comfortable and reduce the risk of seizures – we do.

Thanks for sharing Jen. You and Lily sound like an amazing team! We hope your story helps other families get out and see the sights! -TWT