Cruising with a Tube Fed Child

[PurpleKomodo]

Has anyone cruised with a tube fed kiddo/person before? We leave in literally 5 days. Our cruise leaves port in 9 days. We are getting a serious run around corresponding with Special Services about our needs regarding our kiddo's tube feed. Our kiddo is 100 percent tube fed. All nutrition and hydration is delivered through his g-tube. He has a custom mix that is developed and signed off on by a dietician. We mix 24 hours worth of feed at a time. We have to bring all ingredients onto the ship. We have to bring extra onto the ship because there are another 5 days worth of vacation away from home after our cruise and we can't leave ingredients to roast in our van for four days. These are the current things they are telling us that we are corresponding with them about:

-- Our feed mix has been approved to "bring on board and consumed in our stateroom." Our kid eats when we eat. We will not be taking him back to the stateroom to eat while the rest of us are at the Frozen dinner, for example.
-- They are saying we can't take things off at Castaway Cay. Again, we will not be re-boarding the ship to feed our child 2-3 times while our family is enjoying the beach.
-- They are saying we may not be allowed to take some things back off of the ship. Again, we have to take overstock with us because our vacation does not end when our cruise ends and our ingredients need to stay temperature controlled (not necessarily refrigerated, but not over 100 degrees from sitting in a hot car).

I have never had this kind of difficulty with Disney and I am getting pretty frustrated. I don't want to be hassled by security our whole cruise for just feeding our kid the only way he can be fed. We have already had to concede our cooler size (taking two smaller ones instead of one bigger one) and figure out a way to mix his food without a blender. There is nothing else we can concede on and be able to keep him safe and allow us to actually have a good time as a family on this cruise. We also filled out the form months ago indicating all our needs and no one ever reached out to us. I am feeling defeated and much less than magical. Anyone have any tips. Is there anyone above front line Special Services I can escalate this to? It just doesn't align with the typical Disney values regarding accommodating people with disabilities.

 

[lanejudy]

I'm not sure what his feeds consist of since you mention bringing "all ingredients" with you. Basically the rules about bringing on food are not DCL rules, they are US agriculture rules (and very similar in other countries).

Is this something canned/bottled like PediaSure, or raw ingredients? Raw ingredients will be very challenging due to the agriculture rules. There may be a way to get around it, but if you are only starting to get this approved now there may not be time. Canned/bottled or anything pre-packaged and sealed should be no problem.

As to the dining room -- most likely the person doesn't understand what is involved. I would think you can bring his feed into the MDR as long as it doesn't interfere with other guests (and I don't know that it would). As to taking it off at Castaway Cay -- that is again Bahamian agricultural law and may depend on what exactly you want to bring off the ship. Raw ingredients may not be allowed; prepackaged would be ok.

ETA: sorry, I re-read and it sounds like you can bring supply onboard. As to taking it off again -- in a port, I would not plan on it. Unfortunately, this is an issue that people with allergy or dietary needs deal with on cruises because there are strict rules about what can come off in various ports. Your family may need to eat onboard at CC because the island is under Bahamian regulations. People do leave the ship and return constantly during the day; there is dining available onboard. As to returning to the US -- keep any receipts. If you are only mixing 24-hours worth at a time, you shouldn't have much to take off. Is there any way you can purchase more post-cruise? Or have some left at/shipped to your post-cruise hotel?

 

[PurpleKomodo]

I'm not sure what his feeds consist of since you mention bringing "all ingredients" with you. Basically the rules about bringing on food are not DCL rules, they are US agriculture rules (and very similar in other countries).

Is this something canned/bottled like PediaSure, or raw ingredients? Raw ingredients will be very challenging due to the agriculture rules. There may be a way to get around it, but if you are only starting to get this approved now there may not be time. Canned/bottled or anything pre-packaged and sealed should be no problem.

As to the dining room -- most likely the person doesn't understand what is involved. I would think you can bring his feed into the MDR as long as it doesn't interfere with other guests (and I don't know that it would). As to taking it off at Castaway Cay -- that is again Bahamian agricultural law and may depend on what exactly you want to bring off the ship. Raw ingredients may not be allowed; prepackaged would be ok.

ETA: sorry, I re-read and it sounds like you can bring supply onboard. As to taking it off again -- in a port, I would not plan on it. Unfortunately, this is an issue that people with allergy or dietary needs deal with on cruises because there are strict rules about what can come off in various ports. Your family may need to eat onboard at CC because the island is under Bahamian regulations. People do leave the ship and return constantly during the day; there is dining available onboard. As to returning to the US -- keep any receipts. If you are only mixing 24-hours worth at a time, you shouldn't have much to take off. Is there any way you can purchase more post-cruise? Or have some left at/shipped to your post-cruise hotel?

I get that to a point, but what about bottle fed infants or babies eating pureed food? Surely they are allowed to take the food they need, right? We don't have raw ingredients per se. Everything is in a package but it is mixed together to feed, so once mixed, no it isn't "pre-packaged." We cannot buy many of his ingredients from a store as they are either highly specialized (like special formula) or come in large containers so it would be a lot of waste (like juice). We are already planning to buy the easier stuff that we need after the cruise to cut down on luggage weight.

 

[lanejudy]

Baby formula is allowed as long as it isn't opened - that may be powdered (not yet mixed) or ready-prepared mixture that is in an unopened bottle. Baby food is allowed, as long as it isn't opened. The MDRs will also puree some foods that are on the menu (like peas or veggies, etc.).

If your sons nutrition is a packaged dry mixture, it should be OK. The challenge comes once you open the package and mix it -- presumably with water or juice or such. I know you said you typically mix 24-hours worth -- is that due to the amount in a package? or is that simply for ease of use? If you can mix any of it on the island, you probably won't have a problem taking off the dry mix and a bottle of water.

And again, if it's dry packaged mix, you should be ok bringing it back off the ship post-cruise. Keep/bring your receipts to show it was purchased in the US pre-cruise.

I know your timeline is very tight now. Have you asked his nutritionist about alternatives for while on a cruise or traveling? Do they have any suggestions on how you might adapt the prescribed feeds?

 

[PurpleKomodo]

Baby formula is allowed as long as it isn't opened - that may be powdered (not yet mixed) or ready-prepared mixture that is in an unopened bottle. Baby food is allowed, as long as it isn't opened. The MDRs will also puree some foods that are on the menu (like peas or veggies, etc.).

If your sons nutrition is a packaged dry mixture, it should be OK. The challenge comes once you open the package and mix it -- presumably with water or juice or such. I know you said you typically mix 24-hours worth -- is that due to the amount in a package? or is that simply for ease of use? If you can mix any of it on the island, you probably won't have a problem taking off the dry mix and a bottle of water.

And again, if it's dry packaged mix, you should be ok bringing it back off the ship post-cruise. Keep/bring your receipts to show it was purchased in the US pre-cruise.

I know your timeline is very tight now. Have you asked his nutritionist about alternatives for while on a cruise or traveling? Do they have any suggestions on how you might adapt the prescribed feeds?

We make 24 hours worth because that is how is dietary needs are calculated by his dietician. To get exact proportions of all ingredients to mix individual feeds would be next to impossible. There are 4 different dry ingredients, purees, and 4 different liquids that go into each 24 hour mix. His diet is specialized due to his disability and we can't just change it up on a whim or we could make him very sick.

 

[PurpleKomodo]

Also, as far as the timeline. We are not deadbeats. We submitted things to Special Services months ago. We followed up to make sure they didn't need anything else, twice. I NEVER dreamed this would be an issue and no one from DCL ever asked us questions. Even when we talked to them about needing a blender on multiple occasions. Wouldn't that be the time for them to tell us about ingredient restrictions? We have never cruised. How were we supposed to know and where were the Special Services people to help us process through this when we first reached out months ago? This only came up when we called to ask about a cooler.

 

[lanejudy]

His diet is specialized due to his disability and we can't just change it up on a whim or we could make him very sick.

I understand that and wasn't suggesting to "change it up on a whim." At this point, I guess my best suggestion is to go back through the nutritionist for advice. They must have patients who cruise or travel internationally and have some idea of the restrictions involved.

We are not deadbeats.

I did not mean to imply that. There probably could have been better communication from Special Services, but if you didn't mention what ingredients you planned to blend they may not have realized because it seems many people request to bring a blender for various reasons.

 

[Betty Rohrer]

Has anyone cruised with a tube fed kiddo/person before? We leave in literally 5 days. Our cruise leaves port in 9 days. We are getting a serious run around corresponding with Special Services about our needs regarding our kiddo's tube feed. Our kiddo is 100 percent tube fed. All nutrition and hydration is delivered through his g-tube. He has a custom mix that is developed and signed off on by a dietician. We mix 24 hours worth of feed at a time. We have to bring all ingredients onto the ship. We have to bring extra onto the ship because there are another 5 days worth of vacation away from home after our cruise and we can't leave ingredients to roast in our van for four days. These are the current things they are telling us that we are corresponding with them about:

-- Our feed mix has been approved to "bring on board and consumed in our stateroom." Our kid eats when we eat. We will not be taking him back to the stateroom to eat while the rest of us are at the Frozen dinner, for example.
-- They are saying we can't take things off at Castaway Cay. Again, we will not be re-boarding the ship to feed our child 2-3 times while our family is enjoying the beach.
-- They are saying we may not be allowed to take some things back off of the ship. Again, we have to take overstock with us because our vacation does not end when our cruise ends and our ingredients need to stay temperature controlled (not necessarily refrigerated, but not over 100 degrees from sitting in a hot car).

I have never had this kind of difficulty with Disney and I am getting pretty frustrated. I don't want to be hassled by security our whole cruise for just feeding our kid the only way he can be fed. We have already had to concede our cooler size (taking two smaller ones instead of one bigger one) and figure out a way to mix his food without a blender. There is nothing else we can concede on and be able to keep him safe and allow us to actually have a good time as a family on this cruise. We also filled out the form months ago indicating all our needs and no one ever reached out to us. I am feeling defeated and much less than magical. Anyone have any tips. Is there anyone above front line Special Services I can escalate this to? It just doesn't align with the typical Disney values regarding accommodating people with disabilities.

as for the dining room my guess you would be able to feed there as long as you do not need to have anything done in the kitchen. at Cay Disney has no control of their regs especially if fresh food is involved in the mixture. biggest thing you are running into is what applies in US may not apply in another country, different rules. also you can be running into custom regs regarding what you are bringing into the US even if you left on your cruise with it especially if part is fresh foods. all of these Disney will not be able to change rules for you that would not be a problem at a park

 

[Starwind]

As lanejudy notes, in part you are running up against Customs and Agriculture rules/regulations.

For Castaway Cay, it is rules of the Bahamas. The option that is least likely to cause you problems would be to time your visit to the island to allow you to return to the ship to eat. Lunch is served on the ship. You will also find many guests return to the ship by mid-afternoon [we usually stay on the island until pretty much when they are kicking people off, and the last couple hours are usually a ghost town...the exodous starts slowly a bit after lunch).

For getting off the ship at the end of the cruise, it is US regulations. My recommendations for dealing with that: contact US CBP and speak with them - their contact centre info is here: https://www.cbp.gov/about/contact . I have found them to be exceptionally helpful when I have contacted them about food issues (we have multiple food issues and live in Canada, so when we travel to the US or cruise out of a US port there are added complications of us not just having food but also food that may have been purchased in the US or in Canada).

Some tips USCBP has given me in the past include:
- DECLARE absolutely ALL food to Customs (this includes things you don't think of as food, but which ARE considered food, like gum and candy ! Basically, if a human can eat or drink it, it is "food"!!). By DECLARING all food, you protect yourself - yes, they may decide something is inadmissable, but because you declared it you won't be fined for failing to declare it, they just seize it. If you don't declare it and are caught with it, there are hefty fines.

- have receipts for everything (food). You want to be able to prove where you purchased it.

- make sure packaging has proper labels. Hopefully the labels show things like "product of USA" and such. If they come in a bigger box that has that marking, perhaps take a picture of it ? Ask CBP.

I would recommend you have a letter or prescription from your dietition that explains the ingredients, medical necessity etc. Basically, you want to be able to show this is medical items/food, what its ingredients/components are, and that it is medically necessary / essential to life. It might help too if the letter explains that the larger containers do not come in a smaller size.

Here is an article from CBP about importing infant/baby formula and it gives a USDA number to contact for information, that is another resource to call. https://help.cbp.gov/s/article/Article-392?language=en_US

When we have gotten of DCL ships at Port Canaveral and declared our food to the USCBP officer (on the form I check that YES we have food, and I make a separate written itemized list of every single food item we have, which I have available to immediately show to them if asked; when I hand the form to the officer I state that we have food for personal use and I have a list of what we have if they wish to see it), about half the time they have us speak with an Agriculture specialist. Each time it has added just a couple minutes to clearing Customs. They ask us what food we have, we show them our list, they read it, may ask another question, and then they let us go. They are always polite, professional and friendly.

I hope this helps. I realize we don't have the same issues you do, but I hope our experience gives you some ideas that are helpful.

SW

 

[PurpleKomodo]

UPDATE: We heard back from DCL. At this point, I think we will be okay. Castaway Cay is considered an extension of the ship, so we should be able to take our food off with us there. We were already planning to stay on the ship at Nassau so that is a non-issue. Essentially the rules on the ship about where we could feed out kiddo are due to concerns about allergen exposure for others. Luckily, out mix is incredibly allergen free, but they basically just told us to be careful about handling it, potential spills, etc, which we are. After clarification, it sounds like things won't be as difficult as the initial response from Special Services made it sound. Thanks for the previous comment about how to declare food coming back off the ship. That is helpful.

 

[Lilsia]

I can't see how they would even know what you take off of the ship. As long as it is not agricultural, that the dogs can sniff, they don't know what you have in your suitcase. Just don't put them out the night before and carry them off yourself. No one checks your bags when you leave and go through customs. The agent just looks at your ID. Some might ask if you are bringing anything off but I can't remember that every happening. We go to WDW after our cruises and have a ton of snacks in our bags and it has never been an issue.

 

[Starwind]

The US Customs declaration form that you have to fill out and then hand to the US CBP officer when you get off the ship explicitly asks about food, so everyone is "asked":

 

[Starwind]

UPDATE: We heard back from DCL. At this point, I think we will be okay. Castaway Cay is considered an extension of the ship, so we should be able to take our food off with us there. We were already planning to stay on the ship at Nassau so that is a non-issue. Essentially the rules on the ship about where we could feed out kiddo are due to concerns about allergen exposure for others. Luckily, out mix is incredibly allergen free, but they basically just told us to be careful about handling it, potential spills, etc, which we are. After clarification, it sounds like things won't be as difficult as the initial response from Special Services made it sound. Thanks for the previous comment about how to declare food coming back off the ship. That is helpful.

Glad you got some clarity. Enjoy your trip.

 

[Lilsia]

The US Customs declaration form that you have to fill out and then hand to the US CBP officer when you get off the ship explicitly asks about food, so everyone is "asked":

View attachment 779570

They ask about agricultural items that are banned. They don't care about prepared foods, snacks, etc. Nobody is going to confiscate nor care about the OP's mix.

 

[Starwind]

They ask about agricultural items that are banned. They don't care about prepared foods, snacks, etc. Nobody is going to confiscate nor care about the OP's mix.

Actually, they care about ALL food, and the customs form specifically asks about "food".

The US government has a lengthy list of what foods are / are not allowed to be imported, but all foods, allowed or not, are required to be declared.

 

[Lilsia]

Actually, they care about ALL food, and the customs form specifically asks about "food".

The US government has a lengthy list of what foods are / are not allowed to be imported, but all foods, allowed or not, are required to be declared.

No it doesn't. It asks for specific items that are prohibited like fruits, plants, dirt, etc. They don't care about your Doritos. You can easily Google the form and look at it.

 

[Weedy]

We haven’t filled out a declaration form in years (on Royal) does Disney still do this??

 

[Starwind]

No it doesn't. It asks for specific items that are prohibited like fruits, plants, dirt, etc. They don't care about your Doritos. You can easily Google the form and look at it.

I posted a screenshot from the form above, line 11 a is below, bold added.

11 a) fruits, vegetables, plants, seeds, food, insects.

 

[Lilsia]

I posted a screenshot from the form above, line 11 a is below, bold added.

11 a) fruits, vegetables, plants, seeds, food, insects.

I put my snacks on their the first time we went on a cruise and the TSA agent said that they don't care about that. Of course declare whatever you want, but they are not going to take the OP's food for their child's feeding tube since it is not on the banned list.

 

[lanejudy]

I put my snacks on their the first time we went on a cruise and the TSA agent said that they don't care about that. Of course declare whatever you want, but they are not going to take the OP's food for their child's feeding tube since it is not on the banned list.

It won't be confiscated, no. But it still needs to be declared to Customs. We cross by land border frequently and more than half the time we have picnic, snacks, etc. with us for personal consumption. They just want us to be honest about what we have - be that peanut butter sandwiches, apples or bags of chips. I have known others randomly pulled for inspection and if the food isn't mentioned upfront it can result in a more involved inspection. I assure you they want it declared.