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.
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.