Friday, December 6, 2013

Tips for Flying with a Preschooler with CF

Hi everyone! I'm here to share tips for traveling with a young child with CF.  First I had titled this a "toddler with CF" but now that Charlie's 3 I really don't think he's a toddler anymore! When did that shit happen, right?  Anyways, I'm not expert at traveling but I have picked up some tips along the way from various sources and thought it might be helpful to consolidate them all in one place.  Everyone's situation is unique so this may not be helpful for anyone, but hopefully there is another family like us that will get some use out of it :)  I'll be leaving out the generic advice, like "pack a snack!" or "bring a new toy!" because you can find that stuff elsewhere- I'll be focusing more on the CF side of things.

Tips for Traveling and Flying with a Preschooler with CF

1. Documentation

Print out a medication/information list and pack a copy in each bag.  This might seem like overkill but I figure it's much better to be prepared.  I print out a one page document and put at least one copy into each of our bags, most importantly Charlie's luggage and my purse.  The document typically has the following information:
  • Charlie's Name and Birthdate
  • Diagnosis (Cystic Fibrosis via PK screen at 2 weeks old, etc)
  • Medication List (including name, concentration, dosage, and how many times per day)
  • Hospital Contact Information (Pediatrician and CF Clinic)
  • Emergency Contact
My thought process is that if something happened to Robb or myself someone else could read the list and be able to give him his medications (minus learning how to use a nebulizer/vest machine of course).  Since his medication list and dosages change so frequently only Robb and I ever truly know what meds we are doing at any given time, so it is helpful for your caretaker (or the hospital, god forbid) to know what medicine to administer if you are out of commission.

Along these lines: if you are *leaving* your CF child at home for a few days you will want to attach a form where you allow your caretaker to administer emergency medical care under their discretion.  This means that if your caretaker (let's say Grandma) needs to bring your child to the hospital they won't give her a hard time and delay any care because she's not the official guardian.  It's a very simple document and I'd be happy to send you a copy of mine as a template if you email me at  When Robb and I left for Peurto Rico this spring we made sure my mom had the proper authorization for Charlie's medical decisions just in case something went wrong.

2. Plan and Organize

This one is pretty easy but at the same time it's easy to F up.  Use your medication list (above) as a guide/checklist for what meds to pack.  Here is what I recommend:
  • If you plan on being gone for 5 days, pack enough meds for 8 days.  
  • Pack double the amount of whatever meds you use for sick plan (for us this is albuterol and Pulmozyme).  This is in case your little one gets sick from the plane ride and needs double the usual amount of breathing treatments.  This also applies to nebulizer parts, pack more than you will need!  
  • Don't forget syringes (if you use liquid medications still), shot glasses (this sounds silly but we use plastic shot glasses to draw up small amounts of medication into Charlie's syringes and they work like a charm!), travel applesauce, spoons (it's amazing how many restaurants don't have spoons!), small containers for mixing enzymes and applesauce, ziploc bags for dirty utensils, and ungodly amounts of Purell.
  • Don't forget refrigerated medications (like Pulmozyme and TOBI).  Remember to freeze your ice pack the night before, and don't pull it out until right before you head out the door.  Leave a note on your front door to remind yourself!  We use an insulated lunch box and an ice pack but I've also heard that a frozen thermos works very well and doesn't take up too much space.  
  • If you have any prescriptions that don't have a Rx label on it you will need to tear off the label and pack it. For example, if you take 3 bags of Pulmozyme, instead of the entire box, you won't have the Rx label because it's not on the individual bags. You need to tear off the Rx label from the box and keep it next to the medication.  This is just in case a TSA officer wants proof that medication was prescribed to your party.
  • Optional: obtain a doctors note explaining the medications.  We have only done this once, on our first ever plane ride when I was convinced they would give us a hard time about having all the medications.  We had our CF doctors write a little note saying Charlie had to have X, Y, and Z on the plane just in case.  I've never heard of anyone not being able to take their medications and we've never had an issue with it, but if you're a Nervous Nellie you can always do it to be safe.
3. Medication and Equipment Storage
  • Never check any bags that contain your medication, nebulizer pump, vest machine, etc.  Just imagine being in a new town and having to find a new pharmacy, call insurance, go pick up meds, etc etc because your bags got lost.  Ugh, not worth it, plus you'd probably miss a dose throughout all that chaos.  Not to mention something like the Vest Machine is so expensive you wouldn't be able to get one for a long time.  Which means going back to manual PT again.  Which means shoot me.
  • The last airplane we traveled on was tiny and our Vest bag didn't fit in the overhead bins (even though it was within the size requirements).  They wanted us to check the whole bag but instead Robb took out the compressor and was able to store that in the overhead and the rest of the bag (with the vest and tubes only) could be checked.  This way we could rest assured that the expensive part of the system was always with us and had no chance of getting lost.
4. On the Airplane
  • Bring a small container of Clorox or Lysol wipes and wipe down the arm rests, seats, tray tables, back sides of the seat in front of you, the walls, the window, the seat belt and the window shade.  If your child is tall enough to press buttons wipe those down too.  Seriously- go nuts.
  • Purell as often as you can, especially before your child eats or after they touch the floor if you have a crawler (although I would try to avoid that in the first place if possible).
  • DO NOT use the air conditioning vents! This apparently is one of the best ways to get a plane full of recirculated and germy air.  Keep 'em closed.
Okay, I think that's all that I have for now.  I'm sure I'm forgetting some things so if you have any additional tips I'd love to see them in the comments! 

1 comment:

  1. Good tips! I wouldn't have thought to tear off the pulmozyme label and bring it with us.


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