Tips for Traveling with Little Ones with Cystic Fibrosis

This newsletter was created by the Cystic Fibrosis Family Advisory Board at Riley. If you have ideas for future newsletter topics, please email them to rileycf.fab@gmail.com.


Tips for Airline Travel

If your trip involves air travel, you will want to carry on your child’s medications and respiratory devices. Never check these items with your luggage.

Make sure your child’s medications are in their original prescription bottles with their labels in-tact. You can also ask your doctor for a note that explains what the medications are and why they are medically necessary. This can be especially helpful if you are carrying needles and syringes for injection.

When you arrive at security, let the TSA agent know that you are carrying medications and (if applicable), a medical device. They may want to open up the bags that are carrying your child’s medicine or vest. It is a good idea to ask the TSA agent to put on fresh gloves before touching your child’s items.

It is important to note that medical supplies do not “count” toward your carry-on limit. Some airlines may put special tags on these items to denote them as medical supplies. (You can ask when you check into your flight whether or not these tags are needed).

Finally, take advantage of the pre-boarding option. This will allow you time to store your child’s vest in an overhead bin. It will also give you time to wipe down the tray tables and arm rests with disinfecting wipes.

Grab-and-Go Enzyme Packs

If your child uses applesauce for enzymes, you can save time by creating grab-and-go enzyme packs. Simply fill a plastic baggie with an applesauce pouch; a disposable plastic spoon; and the number of enzymes needed for a meal or snack. If you’re feeling ambitious, you can label the bags “snack” and “meal.” Not only will all your stuff be in one place, but you can use the plastic bag to rein in the enzyme shells and hand wipes that can sometimes take over when eating out.

Easy Sterilization

If you will have a microwave at your destination, consider sterilizing your child’s nebulizer cups in micro-steam bags. These can be easily ordered on Amazon and can be reused a number of times.

You may also want to consider a Wabi electric steam sterilizer and dryer. While originally created for baby bottles Cystic Fibrosis Foundation has approved its use for nebulizer parts and masks, as well. Parts are sterilized and fully dried in forty-five minutes, and if you want, you can program it to re-dry everything every four hours. Ask Andy for more information about the Wabi!

Additional Resources

Looking for more tips? Check out the Cystic Fibrosis Foundation’s web site at https://www.cff.org/Life-With-.... It has dozens of tips on what has worked well for travelers within the U.S. and abroad. It also has information on your air travel rights, managing CFRD while traveling, and more!

Preparing with Your Care Team

Check in with your care team at Riley before you go. They can give you any medical documentation that you might need, including:

  • A note to carry your child’s medications and vest on the airplane
  • A health summary
  • Oxygen documentation
  • A customs certificate for international travel
  • Documentation for an Equal Access or Disability Pass for theme parks

Additional Resources

Looking for more tips? Check out the Cystic Fibrosis Foundation’s web site at https://www.cff.org/Life-With-.... It has dozens of tips on what has worked well for travelers within the U.S. and abroad. It also has information on your air travel rights, managing CFRD while traveling, and more!


Summer 2019 CF Clinic News


Clinical Updates: To improve communication with inpatient families, Dr. Ren (CF Center Director), Dr. Sanders (Associate Director), or Dr. Chmiel (Pulmonary Division Chief) will check in with parents within the first few days of hospitalization. They will help ensure that families understand the plan for admission and make sure there are no questions or concerns


Research Updates:

  • Vertex has submitted its next generation of CFTR modulators (also known as triple combination therapy) to the FDA. Research shows it to be effective in people with CF who have one or two of the F508del mutation. It may be available in 2020 for patients ages 12 and older. If you have questions, please talk to your doctor when you are in clinic.

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