Medical Information And Planning While Traveling

Travel can be safe and fun for most children with serious illness. Preparation, realistic expectations, and input from medical team members can help your trip be successful!

Written by Becky Oakley

Becky is a Family Nurse Practitioner who has dedicated her life and nursing career to caring for children with life-changing diagnoses and disabilities. Becky adores her six children, who inspire her daily. Brades’ Place is named after her medically complex son, Brady, who taught her that children with unique traits do amazing things every day.

Published June 2, 2022

Medical Information

Preparation is key to successful travel for children with medically complex diagnoses, and something that can be done well in advance.


Input and orders from providers

Gathering input about your travel plans from each active member of your child’s medical team is important. Tell them your plans (timing, location, activity details), ask any questions, and ask for their input. Have them formalize and sign any needed orders, routine and PRN prescriptions, letters of medical necessity, and equipment needs.


Anticipate medical challenges

Anticipate what symptoms and problems might worsen during the trip, such as dystonia worsening with a road trip because of increased time without position changes. Next, with your medical team’s input, create a plan to respond to the worsening of symptoms. This might include increasing medication PRN to help with the worsening dystonia or adding an extra dose of your seizure rescue medication for added safety while far from your pharmacy. If you don’t already have one, here is a Symptom Management Plan template to get you started. Having a proactive plan in place is the best preparation for handling worsening symptoms or ‘what if’ situations.


Organize medical information

Whether as a hard copy or digital, compile detailed medical information including in case of emergency information (see link), diagnoses, medications, allergies, insurance, current orders, nutrition, communication, medical team contacts, past surgeries, hospitalizations, and POLST/MOLST forms. The Lightning Bug App is a great tool for compiling this information and you can download a copy as a PDF.


Keeping papers and information handy

Keep your child’s medical information easily available by putting it on your phone, emailing it to yourself, or storing it in a google drive folder. Print out a hard copy and keep it in your ‘go bag’ or first aid kit.


Other Tips


Extra supplies

Be sure to have several days extra of medications, supplies, and treatments.



Identify needed medical resources on arrival

Upon arrival, identify the location of medical facilities if you have scheduled treatments or medical care planned. Also ask your host or hotel staff about the closest children’s hospital, urgent care, etc. in case it is needed.



Activities with your child

Carefully consider how your child’s unique body will tolerate various activities. For example, long times in the sun can be especially tiring for some, and even mild amusement rides can be a danger for those with abnormal muscle tone. When in doubt, discuss your plans with your medical team and ask for their insights.



Where to attend to cares in public

Most attractions and amusement parks have a first aid or security room with a bed that could be used for feeding, medication delivery, changing briefs, or attending to other needs that are best done in a comfortable and private setting.

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