Identify local medical providers in the area where you are traveling. If possible, we tried to find a local metabolic specialist (who would be able to treat Melissa if she were to have a metabolic crisis during our trip) and jot down their contact information.
Pack extra medical supplies to carry on the plane. It can be impossible finding a replacement feeding tube or 60cc syringe in a small country town on a Sunday. So we always brought extra. But as we all know, carry-on luggage now comes under great scrutiny. When we pass through the security checkpoint we are routinely pulled aside where they open our bag and we have to explain to the agent why we are carrying bags of “white powder” (Melissa’s special metabolic formula) and syringes (for her bolus tube feedings). We also carry liquid medications—often in excess of the maximum allowed for carry-on luggage.
While we have never been refused passage, I imagine that someday it might happen. So I recently visited the TSA web site (www.tsa.gov) which has a section that addresses Travelers with Disabilities and Medical Conditions. In part it reads:
Medications. You may bring all prescription and over-the-counter medications (liquids, gels, and aerosols) including petroleum jelly, eye drops, and saline solution for medical purposes. Additional items you may bring include:
- Liquids including water, juice, or liquid nutrition or gels for passengers with a disability or medical condition;
- Life-support and life-sustaining liquids such as bone marrow, blood products, and transplant organs;
- Items used to augment the body for medical or cosmetic reasons such as mastectomy products, prosthetic breasts, bras or shells containing gels, saline solution, or other liquids; and,
- Gels or frozen liquids needed to cool disability or medically related items used by persons with disabilities or medical conditions.
You are not limited in the amount or volume of these items you may bring in your carry-on baggage. BUT if the medically necessary items exceed 3 ounces or are not contained in a one-quart, zip-top plastic bag, you MUST declare to one of our Security Officers at the checkpoint for further inspection.
I have printed out this page and plan to have it handy in the event that we encounter a TSA agent who is not totally knowledgeable in this area.
Another aspect that we learned about travel is that we become disconnected from the medical team that we have come to value and rely upon. At home they know our child and are available with a phone call. But what happens if you need them and you are thousands of miles away?
Recognizing that this might be an issue, we asked Melissa’s metabolic specialist to write a “treatment letter”. The letter was intended to provide an ER physician with a general overview of her unique, rare condition as well as a “game plan” for treatment should that become necessary. We always kept the letter with us. Then on one trip, Melissa had a metabolic crisis. We had a great sense of security as we gave the letter to the attending doctor who proceeded to care for her!
There are many resources on the Internet that offer helpful tips regarding special needs travel. One of the most comprehensive that I found was on the Oley Foundation web site. Founded in 1983 by Dr. Lyn Howard and her patient Clarence “Oley” Oldenburg, the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that provides information and social support to consumers of home parenteral (IV) and enteral (tube-fed) nutrition, helping them live fuller, richer lives. At their web site www.oley.org they offer some excellent travel tips as well as a number of “template” travel letters that you can provide to your medical team so that you have fully documented directives for situations such as hospitalizations and IV/Tube feeding.
The best advice that I can offer dates back to my Boy Scout training—BE PREPARED.