Tips for traveling
Planning and preparation can go a long way when it comes to leaving your house or traveling with a loved one who has Dravet syndrome. These tips may make your day a little easier, whether you’re going on a short day trip or hopping on a flight.
What to bring with you
Be sure to double check that all of these items are with you when you leave the house for a day on the go.
- To-go bag: Your to-go bag should be a bag you carry with you in case of emergency with items like rescue medication or an
extra set of clothing. If your loved one with Dravet syndrome is a teenager or older, having them carry their own to-go
backpack or purse can give them an extra sense of independence. - Printed medical information: Keep printed papers with a list of your loved one’s current medications, and their seizure
action plan with you, so that any new doctors can get up to speed in the event of an emergency. - Outdoor essentials: Many children with Dravet syndrome need accommodations for outdoor activities, depending on the
weather. On a hot sunny day, they may need a cooling vest to regulate their temperature, or sunglasses to prevent myoclonic
seizures. In cold weather, it may be helpful to give them a blanket in the car so they can stay warm with something less
restrictive than a jacket.
Over the years we've learned that life is going to throw us curveballs and it's just our normal. We got to a point of acceptance to expect the unexpected but still venture out and try new things. So as her seizures started to get better, we started to be like, ‘Let's go on this kind of trip.’
—Erin, mom of Mia, age 16
Make the most of your days away
Here is some advice on how to get out of the house while also keeping your loved one safe:
- Share your seizure action plan: Before an outing or trip, tell friends and family that will be with you about your seizure action
plan, and let them know what to expect if a seizure happens while you are outside of the home. - Rest up: A good night’s sleep before a trip can do wonders for the whole family and help maintain your loved one’s daily routine.
- Taking a flight? Call your airline and TSA Cares: Before you head to the airport, make sure to call the airline you are flying with,
because each airline has different requirements for what kind of safety equipment you can bring. Additionally, calling the TSA Cares
helpline can set your family up with a passenger support specialist to escort your family through airport security. - Start small: It is okay to be nervous about being on the go with your loved one who has Dravet syndrome. Your comfort level may
change over time based on how well your loved one’s seizures are managed. Be gentle with yourself and start with small activities,
like going on a short walk as a family. - Trust your gut: You know your loved one and their triggers best. If you feel like an event is too hot, too noisy, or too
overstimulating for them, you are probably right. Your family and friends will understand if you have to cancel plans or RSVP 'no.'
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