Feeding Tube Supplies and Liquid

[Obx_1974]

We are cruising for the first time with our 9 year old daughter who is disabled and we use a PEG tube for half of her meals. She was diagnosed about a year ago with a disease which requires her to be on the Ketogenic diet for treatment and the tube was placed at that time; so this is our first time traveling by plane/cruise with the supplies.

 

Couple Questions: Will the airlines allow us to bring on liquid formula in our carry-on?

 

Is it best to pack all of the feeding supplies in a separate checked suitcase?

 

Also, if anyone has experience cruising while on ketogenic diet, any advice would be greatly appreciated!

 

Mike

[jarvb]

We traveled with our adult son two years ago who had a gastrostomy feeding tube. We packed all the feeding supplies in one suitcase and labeled it medical supplies. The airline should not charge you for medical supplies. The actual formula for the feeding was a case of cans of Jevity. We took the whole case, the airline reinforced the case in another plastic bag and did not charge for that either, again it was considered medical supplies. I took extra supplies, just in case we got back to port late or planes were delayed. I can't help with the Ketogenic diet but if you let the special needs department know about your daughters special dietary needs, they will go out of their way to accommodate her needs. It may not be perfect but they will certainly try.

[mdvlprof]

No experience with ketogenic.

 

Cruiselines, and we've been on a few, do a great job accommodating for folks with peg tube. DS can't eat, can just taste a spoonful or two. Cruises always made sure there was something he could try, even if it meant pureeing something for him.

[Marie51]

The airlines will let you bring liquids that are over 3 oz and medically necessary but you have to let them know when you first check in. There is info at the TSA website.

 

http://www.tsa.gov click on "traveler information"

Edited March 5, 2014 by Marie51

[Obx_1974]

We traveled with our adult son two years ago who had a gastrostomy feeding tube. We packed all the feeding supplies in one suitcase and labeled it medical supplies. The airline should not charge you for medical supplies. The actual formula for the feeding was a case of cans of Jevity. We took the whole case, the airline reinforced the case in another plastic bag and did not charge for that either, again it was considered medical supplies. I took extra supplies, just in case we got back to port late or planes were delayed. I can't help with the Ketogenic diet but if you let the special needs department know about your daughters special dietary needs, they will go out of their way to accommodate her needs. It may not be perfect but they will certainly try.

 

 

The formula can be quite heavy. Did the airline have a weight limit on the bag?

 

We also plan on taking more than we need, just in case of delays or she's not eating her meals by mouth.

 

Did you take your son out on any excursions? If so, did you have any trouble getting unused formula back on ship?

 

I have emailed about the Ketogenic diet and was told that they have most of the food items on board. We will bring our own scale and weigh each item.

However, they weren't very specific as to the process of getting the food. I wonder if I will have a contact person on board for dining to call ahead for the meal. Just a lot of unknowns as to how this will all work.

[Obx_1974]

No experience with ketogenic.

 

Cruiselines, and we've been on a few, do a great job accommodating for folks with peg tube. DS can't eat, can just taste a spoonful or two. Cruises always made sure there was something he could try, even if it meant pureeing something for him.

 

That is great! Would they accommodate him at all the eateries besides the MDR? I wonder if we will have to go to the same location each time to get her food.

[Obx_1974]

The airlines will let you bring liquids that are over 3 oz and medically necessary but you have to let them know when you first check in. There is info at the TSA website.

 

http://www.tsa.gov click on "traveler information"

 

Thank you...that link to the TSA is very informative. I had her neurologist write a letter of medical necessity for the formula. I might not need it but will be good to have just in case.

 

Mike

[mdvlprof]

That is great! Would they accommodate him at all the eateries besides the MDR? I wonder if we will have to go to the same location each time to get her food.

 

I'm not sure about quick-serve places. Buffets offered enough choice for us to find something he could try.

MDRs are best bet if you need something special. Every dinner, server brought menus for the next day, to see if we needed to make special orders. When we planned on eating elsewhere, told server, so chef there would know we were coming.

 

Oh, and let Special Needs know you'll probably need special food.

Edited March 6, 2014 by mdvlprof

[jarvb]

When my son was using the feeding tube, he was also on a pureed diet. I forget how it worked the first night but i think they just pureed the food that night at dinner time after he selected what he wanted. Then each night, the head waiter would meet with us with the menu for the next day and we would select his meal then. If he wanted breakfast and lunch in the MDR we could have done that also. He wanted to eat breakfast and lunch else where so we were told that if we needed assistance in finding foods for him just to ask for the head waiter and they would be there to assist is getting what ever he needed. We honestly had no problem anywhere we went. We also were apprehensive before we were on the ship, but we had no need to be. As far as the weight of the suit cases, just pack in more than one bag, be sure to mark them medical supplies and pack the formula by itself , again clearly marked. The airlines were really good about not giving us any grief with the medical supplies. They never questioned what was in the bags either.

[mdvlprof]

Did you take your son out on any excursions? If so, did you have any trouble getting unused formula back on ship?

 

 

I've never had problem. As long as can/carton is sealed.

[jarvb]

We never took formula off the ship, we arranged his tube feeding times so that we didn"t have to take formula off the ship. I don't know how your formula is packaged, or how often you are feeding her, but maybe you could just take what you need, eliminating the possibility of having to bring opened container back to the ship. My son was an adult so he just took a whole can of the jevity each time, there was never any open containers with left over formula. I know with a child that may not be the case.

[Obx_1974]

Thank you all. I'm feeling better about the meals. Sounds like I will need to find the head waiter wherever we decide to eat and request the specific ingredients. Maybe I will print off the recipes and give to the waiter.

 

A typical meal is: 11 grams of chicken breast. 35 grams of green beans. 11 grams olive oil and 61 grams heavy whipping cream. Give this recipe printed might be the best way to go.

 

Her formula comes in containers that are like juice boxes. We mix with a very small amount of milk and water. Would need to mix before leaving the ship and would need to keep cool. So probably a small cooler with ice packs would work.

 

 

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[Marie51]

Thank you all. I'm feeling better about the meals. Sounds like I will need to find the head waiter wherever we decide to eat and request the specific ingredients. Maybe I will print off the recipes and give to the waiter.

 

A typical meal is: 11 grams of chicken breast. 35 grams of green beans. 11 grams olive oil and 61 grams heavy whipping cream. Give this recipe printed might be the best way to go.

 

Her formula comes in containers that are like juice boxes. We mix with a very small amount of milk and water. Would need to mix before leaving the ship and would need to keep cool. So probably a small cooler with ice packs would work.

 

 

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You can request a medical refrigerator for your cabin if needed.

[Obx_1974]

Do you know if it has a freezer too?

 

 

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[Marie51]

I don't know if it has a freezer but you can call the special needs dept and they would be able to tell you.

1-866-592-7225

[kellanrevere]

We are cruising for the first time with our 9 year old daughter who is disabled and we use a PEG tube for half of her meals. She was diagnosed about a year ago with a disease which requires her to be on the Ketogenic diet for treatment and the tube was placed at that time; so this is our first time traveling by plane/cruise with the supplies.

 

Couple Questions: Will the airlines allow us to bring on liquid formula in our carry-on?

 

Is it best to pack all of the feeding supplies in a separate checked suitcase?

 

Also, if anyone has experience cruising while on ketogenic diet, any advice would be greatly appreciated!

 

Mike

 

Are you staying overnight before you leave on your cruise ? You could have a case if formula shipped to your hotel a day or two ahead of time.

I have had to carry an ice pack and meds in a collapsible cooler bag on board the plane. Security was wonderful about it.

Have a wonderful trip.

[sail57]

My husband has just returned from his first cruise using a feeding tube

I checked this board before we left and used the great information

We sent 4 cases of liquid nutrition to the hotel by UPS

We left the labeled cases at the dock with our bags and everything was delivered to the stateroom

On our flights he told TSA that he had the liquid 4-6 cans ,they looked in the case,but did not ask to see the medical note.

Everything was easier then we expected

Thank you to everyone for sharing your information

[sherry08]

My son has had a feeding tube since he was two months old, he is almost seven now. We have traveled all over North America and taken one cruise, all without incident. We always travel with a spare button and all supplies, including an extra feeding pump. I guess the worst was last year when we arrived in Orlando and had forgotten the pump charger. We called around at three in the morning and our home health located a charger in Tampa. We drove over and borrowed it for the duration of our trip, even took it home with us and then our home health arranged for return shipping. Other than gas to Tampa we never paid a cent.

I no longer carry a medical letter with me because I have not found that it was ever needed. I did for a few years and even when I tried to show it to TSA they could not understand what they were reading (medical verbiage).

In addition to formula I always carry bottled water and juices for him, usually the child size Capri Suns for extra hydration.

When we cruised on Carnival they were wonderful about accommodating his every need, never questioned what we needed to bring onboard, gave us a private dining table for the entire week and the children's staff were outstanding. We never changed a diaper on that cruise because the staff just went over and above to make our trip wonderful. We just showed up at feeding times to feed him and at bedtime to put him to sleep. All other times he was happily entertained in the children's area and cried when he had to leave.

We have cruises booked now on NCL and DCL. I have contacted both cruise lines with our needs and they have indicated there will be no problems with us bringing everything we need on board and a fridge will be provided. I do not recall having a fridge on Carnival. If anyone is considering a cruise with their family member that requires tube feeding please do not hesitate. It was the most relaxing vacation we have ever had. My son has multiple disabilities and when he was born we decided we were going to have a normal life just like before and we have. I think he has greatly benefitted from travel and from parents who are able to get away and cross things off their bucket list.