Flying Tips And Protocols

Flying Tips And Protocols

Notes from an FD parent, hope you find this useful. Please let us know your thoughts?

Oxygen must be pre arranged

Not all airlines carry oxegen for passengers, and the ones that do will only supply for one passenger per flight – So book early.


Airlines require specific flight insurance for FD patients. I have a seperate insurance with the FD condition named on the policy.

Fit to fly

Airlines require a fit to fly document written from your doctor within 7 days of your flight.

This lists the condition as well as equipment and drugs you need to take with.


I take my perscriptions with in case I need any more while abroard.

Take EHIC card with.

The EHIC lets you get state healthcare at a reduced cost or sometimes for free. It will cover you for treatment that is needed to allow you to continue your stay until your planned return. It also covers you for treatment of pre-existing medical conditions and for routine maternity care, as long as you’re not going abroad to give birth. ()

Seating and baggage

As we are now registered for flying with assistance with Monarch, we are allowed one suitcase for medical equipment which we do have to pay for taking on the aircraft. We also do not have to pay for allocated seats (Monarch airlines)

Flying assistance

Arrange for flying assistance when disembarking. Often the pressurised plane makes FD patients dizzy when they get off.

(We have wizzed through Gatwick airport in a golf cart provided by the airport previously)

The following protocol has been taken from the”FAMILIAL DYSAUTONOMIA” A manual of Comprehensive Care Fith Edition 2009

  • Patients should be well rested prior to take off.
  • Avoid overeating on the plane and definitely avoid carbonated beverages. Keep the gastrostomy feeds smaller than usual.
  • Vent the gastrostomy tube during times that the cabin is changing pressure. That starts when the cabin doors close until cruising altitude is reached and then prior to descent.
  • Lubricate the eyes frequently as airplane cabins have low humidity and there are many air vents blowing– even one from another row can blow across and be a problem.
  • To prevent drops in blood pressure, the individual should walk around the cabin and the bladder should be emptied frequently.
  • After landing, blood pressure may be unstable (especially if descent has been rapid or if the child is known to be prone to low blood pressure) so do not let the child walk any distance. A wheelchair should be available.
  • Supplementary oxygen should always be available and using the pulse oximeter is a good idea. Put on oxygen if her saturations go below 95%.

If you think the flight or trip is exciting to the patient then you can give the Valium–2.5 mg should be given 6 hours prior to flight and then another 2.5 mg 2 hours prior to flight.


Have a good time

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