flying with tube feeding formula in carry on

[angelbearmom]

My ds and I are going to DW in Sept. He is fed via jtube 24 hrs a day. I plan on getting a letter from his ped stating that he needs to be hooked up to his feeding pump constantly even during take off and landing (I've had battles with this in the past). But, I'm concerned about security and his tube feeding formula. As our trip will take most of 24 hrs before we get to our room and get our luggage, I need to bring lots of formula with me on the plane. I plan on filling 2 1 litre (he gets about 2 litres/day) bags with mixed formula as that's easier than dealing with tins and adding water and such on the plane. Am I going to have trouble getting on the plane with this. I'm thinking that I should also bring 2 or 3 tins of formula just in case they take away his formula. I know they say baby formula is allowed but what about bags of tube feeding formula. My ds is losing weight and already not getting enough fluids in a day so not having him fed for 10 or more hours just can't be done. Any suggestions? We see our ped on Monday. I'm going to get him to sign a letter with my ds's meds and mention that 2 of them are liquid. I can't just take the however many fluid ounces that are allowed as we're gone a week and he needs more than that. Anything else I need to get the dr to state? I just write out a letter and he signs it.

Thanks,

 

[SueM in MN]

Tube feeding would be handled like medications in this link from the Transportation Security Administration page.
Here's another link that has to do with fluids, including formula and 'liquid nutrition. Note that it says that "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."
So, basically, you need to tell them that you have a large quantity of liquid and allow them to screen it. You should not need a doctor's letter, but I would have one anyway. It should state that your child needs to be on continous tube feeding and that you need to carry an amount sufficient for at least 24 hours with you.

The feeding pump should be considered a prosthetic device and treated as other types of devices are in this link.
For the feeding during take off and landing, you will need to contact your airline.

 

[angelbearmom]

thanks, that makes me feel better. When I read all the info it made me realize that I have to make sure that the dr mentions in his letter that I need to carry water or saline with us with the suction pump. He didn't have this many needs the last time we traveled. I'll also have to make sure they know that he has rods in his back and hips; he'll set off any metal detector. gee whiz. This is complicated. We're going to have enough fun to make it all worth while I'm sure.

 

[Ms_Butterfly]

As stated above, medical liquids and gels are allowed through security. Bring enough for the period you need (and think about bringing a bit extra just in case your checked baggage is delayed/lost unless you can buy the formula near where you're travelling to) in your carry-on.

Remember that medical supplies don't count towards your carry-on limit by law (ACAA - Air Carrier Access Act).

Also, it might be against FAA regulations to feed your child during take-off and landing, in which case you do have to follow that for the safety of the plane and other passengers. A doctor's orders will not change that. (You can also be fined for going against the FAA, I believe.) So, be sure to check the FAA and airline rules about using the pump/feeding during take-off and landing before you try using the pump/feeding during those times. If you are allowed to do it, you may want to get that in writing since you've had trouble convincing the flight crew before.

 

[angelbearmom]

The problem with having the pump hooked up during take off and landing isn't technical. It's simply that as we're always in bulkhead seating we don't have anywhere in front of us to put the pump. They're usually pretty good but I have had to put my foot down on it a couple of times. I think the last couple of times I just wedged it between ds and me. Having a dr say that he needs to stay attached to it at all times as helped in the past.

Thanks for the info.

 

[Ms_Butterfly]

It is against FAA regulations to have luggage in the bulkhead at take-off and landing, so that is what the problem is. A doctor's note doesn't change the safety regulations. You need to either sit elsewhere or remove the luggage during the times it is not allowed to be there or check with the FAA regulations to see if there is any kind of exception for semi-essential medical devices such as a feeding pump. (I say "semi-essential" because you said he could be without it, just that he shouldn't be, so he won't actually die without it for 20-40 min. like somebody might without their oxygen. Even ppl with oxygen tank needs have problems using oxygen tanks while flying.)

Good luck! I hope you can get it all straightened out and that you can end up using the pump at all times.

 

[angelbearmom]

A feeding pump isn't luggage; it's a necessary appliance-it's just visible where a urine bag or similar isn't. The only time I really had to argue with them I believe the flight attendant just put the pump in the closet right in front of us or under the last seat in first class; the tubing is long enough usually that it reaches. I can't remember the last couple of times we flew. I think I likely just wedged it between my feet or in the seat between us. The pump iteself isn't that big-it's just the stand it's in that takes room. It can go between us quite easily. I know I sound obsessive about this but with the length of time before and after take off and landing that you have to remain seated that's close to an hour or more that he wouldn't be receiving fluid or nutrition-the fluid is more important than the nutrition. He already has to be fed too slow for him to get everything he needs in a day and with us ending up in the heat and humidity of Florida he can't afford to be down any more on his fluids. I usually don't have too much of a problem. But, I've got my letter ready for the dr to sign tomorrow.

thanks for your comments.

 

[Ms_Butterfly]

Medical devices/accessories are luggage, no matter how necessary they are. Wheelchairs are luggage, too, whether they are stowed in the seat next to you or elsewhere.

If you check with the FAA regulations, you'll find out if the pump can be used or not. Then, arm yourself with that information (i.e. print it out from an official site or ask for a faxed or mailed letter on official letterhead) to show to the stewardesses. I know you want it to be used during take-off and landing and it should be used for your son, but if it is against safety regulations, it can't be used at those times. Also check with your particular airline, as some lines may have stricter rules (i.e. I think some lines allow personal oxygen while others don't - at least not 'til the new ACAA laws go into action next year). I know implanted devices are allowed at all times, as not all of them can be turned off, such as pacemakers, but I don't know about external devices like feeding pumps.

Also, have you checked with Disney as to whether the pump can be used on rides or not? Or, really, which ones it can and can't be used on - it likely can't be used on Rock'n'Roller Coaster, which goes upside down, for instance.

 

[angelbearmom]

I've had no problem with the pump online and talked with a friend who also has flown many times with her daughter's pump turned on.

DS won't be going on many rides and only on ones where he can stay in his wc and as I'm a big chicken we will only be going on very mild rides. We mostly do shows, meals, & characters.

 

[zoeyh2000]

My sister and I have flown several times with my niece's pump (including liquid/formula) and her suction (with water) and have never had a problem. My sister usually calls the airline ahead of time to inform them of our trip, her needs, and to ask if there is particular paperwork necessary. As for the security screeners, once she showed the doctors note the passed all the equipment through and didn't ask any other questions. Hope this helps.