Feeding Tube Questions

[Chernandkida]

My husband and I have been to WDW several times. This will be our first time with kids. Our 1 year old (when we go) is fed via feeding tube. She can take some food by mouth, but when we go at the end of April her primary source of nutrition will be the tube. We have buffet meals planned, but she also has severe food allergies.

Here are my questions:
1. Will she be allowed to take her backpack for the kangaroo pump on the rides? Since she's so little, she only goes on the mellow rides.

2. Will they accommodate her at buffets with her allergies to let her get a couple of items she can eat even though she has a feeding tube?

3. Do you have any tips? We do bolus feeds during the day over 90 minutes, we are working on getting extra joey bags so we don't have to wash in the sink. Any tips for other things?

Thanks

 

[4Beans]

As far as the allergies go, the chefs will be more than accommodating. I have celiac and must keep a strict gluten free diet. I've has nothing but positive experiences. Good luck

 

[HollenAngi]

My son was on a feeding tube for 5 years and you shouldn't have any problem at Disney. He was only on bolus feeds for our Disney trips but I can't imagine there would be a problem with having the pump on most rides. We did go to guest services and explained we could not be in lines more than an hour because of his feeding schedule and they were very nice about it and made accommodations. We never had the allergy issues so do not know how that is handled. Good luck and have a great trip!

 

[amykathleen2005]

My husband and I have been to WDW several times. This will be our first time with kids. Our 1 year old (when we go) is fed via feeding tube. She can take some food by mouth, but when we go at the end of April her primary source of nutrition will be the tube. We have buffet meals planned, but she also has severe food allergies.

Here are my questions:
1. Will she be allowed to take her backpack for the kangaroo pump on the rides? Since she's so little, she only goes on the mellow rides.

2. Will they accommodate her at buffets with her allergies to let her get a couple of items she can eat even though she has a feeding tube?

3. Do you have any tips? We do bolus feeds during the day over 90 minutes, we are working on getting extra joey bags so we don't have to wash in the sink. Any tips for other things?

Thanks

1. How many bolus feeds do you do throughout the day?If they are only 90 minutes perhaps you can have a feed in the hotel in the morning, go back to the hotel for a nap and do a second and do a third in the evening when you get back. You wouldn't need to take the bookbag then. If not can you keep the pump in the stroller? I just worry it would get jostled or pinched on a ride.

2. As she is under 3 she would eat off your plate for free. So as long as you pick something that she can eat she should be fine. You can have the chef come out to show what is safe for her.

3. The first aid station in each park has cots and sinks and a quiet area that you could use to set up the feedings in so you don't need to use a dirty bathroom sink.

 

[Chernandkida]

We do 3 90 minute boluses every day. I just worry if we do it in the morning/evening, it will be way too close to her overnight feed. I try to give a couple of hours between the overnight feeds on both ends of the spectrum. I am hoping by then she will progress and we can syringe bolus and we won't need the pump.

Since she's only 1 - I don't think we'll be going on any rides that would jostle. My husband or I would wear the backpack. If we wanted to go on one that was shakier, like pirates, we would try to time it while she wasn't on her feed.

I know she's allowed to eat off my plate for free, was just wondering if they would be able to assist since she's under 3 and not a paying guest. I wouldn't be able to get items directly from the buffet to give to her because of cross contamination. Her allergies are very severe. I just don't want it to be too difficult at the restaurants, if needed I could bring her safe snacks.

 

[lanejudy]

... I know she's allowed to eat off my plate for free, was just wondering if they would be able to assist since she's under 3 and not a paying guest. I wouldn't be able to get items directly from the buffet to give to her because of cross contamination. Her allergies are very severe. I just don't want it to be too difficult at the restaurants, if needed I could bring her safe snacks.

Yes, there's another recent post on this very topic. At a buffet, they will prepare something safe for the child with no additional charge. At other restaurants, if you order something different for the child, you'll be charged for the meal.

Enjoy your vacation!

 

[mistysue]

Yes, any meal where prices are determined by age alone (buffet, family style, CRT), she will be free and they will give you food for her.

Depending on what the actual allergies are, most table service locations should make it easy for you. The locations that are not really run by Disney- such as many of the world showcase locations- sometimes will have obstacles including ingredient and language barrier issues. If you want to eat in the world showcase we have had good luck at Biergarten, but use your best judgement and check out the menus before you decide where to go. For example, if you can't have corn the Mexican place is a bad idea, if you can't have wheat or dairy you might not want to pick the pizza place.
Again, depending on the specific allergies, counter service locations can be tricky. Everywhere has something gluten free, something dairy free, something nut free- the problem is that if you have all three allergies it might be that none of the options overlap into one food.
If you go to a place (table or counter service) and have to order extra food, of course they are going to charge you for it. If it's a reasonable option and she isn't going to eat a whole lot, you may be better off if one of you order a meal she can eat some of.

What is she allergic to?

 

[Chernandkida]

She's allergic to milk, peanuts, and cashews that we have found so far. All of our meals are buffets, so that's good. The only one in Epcot is Akershus, since it's popular I'm guessing they are familiar with allergies. For counter service, we will have to see if they would even have anything. If not, we will use safe snacks for her to eat.

We can't wait for the trip! It's just different for us planning with kids, then planning for special needs too.

Thank you everyone for your help!

 

[SueM in MN]

Besides a place to actually do the feeds, you can store equipment and supplies at a First Aid at any park.

 

[mistysue]

She's allergic to milk, peanuts, and cashews that we have found so far. All of our meals are buffets, so that's good. The only one in Epcot is Akershus, since it's popular I'm guessing they are familiar with allergies. For counter service, we will have to see if they would even have anything. If not, we will use safe snacks for her to eat.

We can't wait for the trip! It's just different for us planning with kids, then planning for special needs too.

Thank you everyone for your help!

Just as a heads up (as if you need more things to worry about!) always check about the eggs. My DS is allergic to eggs so I don't pay close attention when people are talking about it, but every so often people will mention the eggs being from a premade mix. I believe it contains dairy and is the sort of thing that may be easy to forget and miss. If you get her scrambled eggs I would check that they are fresh cracked eggs, not the mix.

 

[tml1270]

Depending on her rate of feed during the night if you talk with the Dr. you might be able to increase the rate a bit to be able to decrease the time of the feed during the day.
So if you feed at 50ml/hour during the night you may be able to increase to 60ml/hour and then only have to feet for 45-60 min during the day.

But, if the Dr. says it is ok you should try this a couple weeks ahead of time. Sometimes the kids can't tolerate the increased rate.

 

[Schmeck]

Since she's only 1 - I don't think we'll be going on any rides that would jostle. My husband or I would wear the backpack. If we wanted to go on one that was shakier, like pirates, we would try to time it while she wasn't on her feed.

There are very few attractions where you can wear a backpack on the ride. I'd time the feedings to happen while you are in a show, so the backpack could be in your lap.

 

[clanmcculloch]

Akershus is owned by Disney so you'll be fine. We've only eaten dinner there but we had good experiences each time.

Just as a heads up (as if you need more things to worry about!) always check about the eggs. My DS is allergic to eggs so I don't pay close attention when people are talking about it, but every so often people will mention the eggs being from a premade mix. I believe it contains dairy and is the sort of thing that may be easy to forget and miss. If you get her scrambled eggs I would check that they are fresh cracked eggs, not the mix.

What chefs have told me about the eggs is that they're liquid eggs which are pre-scrambled. All that's in them is eggs and some kind of preservative. I believe the preservative has corn in it but it is milk, gluten, peanut, and tree nut free. I'm not positive about soy but I think it's soy free. Confirm that the eggs are free of allergens but for the most part they're ok for most people. My 13yo and I can both eat the eggs though my 13yo doesn't like the way they taste so the only way she'll eat eggs at WDW is if the chef cooks them from fresh eggs. I don't taste a difference but little miss fussy-pants does.

 

[brown1442]

You will not have any issues with the feeding tube back pack on any rides. Disney is well versed with them and will tell you what to do with it on each ride. No worries.

My son is on 18 hour continuous feeds. Have you considered asking for the Infinity pump? Its MUCH smaller and lighter... easier for a lil one to carry around!!

 

[Chernandkida]

You will not have any issues with the feeding tube back pack on any rides. Disney is well versed with them and will tell you what to do with it on each ride. No worries.

My son is on 18 hour continuous feeds. Have you considered asking for the Infinity pump? Its MUCH smaller and lighter... easier for a lil one to carry around!!

I would LOVE the infinity. We are working to get it. Now that she's crawling the Joey is a pain. I know with the infinity and super mini backpack she could wear it.

I'm glad the backpack won't be an issue. I figured they see them all the time.

 

[Chernandkida]

Besides a place to actually do the feeds, you can store equipment and supplies at a First Aid at any park.

I hadn't even thought about storage. Thanks so much!

 

[Chernandkida]

Depending on her rate of feed during the night if you talk with the Dr. you might be able to increase the rate a bit to be able to decrease the time of the feed during the day.
So if you feed at 50ml/hour during the night you may be able to increase to 60ml/hour and then only have to feet for 45-60 min during the day.

But, if the Dr. says it is ok you should try this a couple weeks ahead of time. Sometimes the kids can't tolerate the increased rate.

She's always had rate issues in the past. We have had to work up 1-2 ml/hr a day to get where we are now. She doesn't have motility issues, but her motility isn't that great if that makes sense. I'm just scared to mess with the rate/her schedule too much because I feel like we finally have a plan that works.

 

[Chernandkida]

Akershus is owned by Disney so you'll be fine. We've only eaten dinner there but we had good experiences each time.



What chefs have told me about the eggs is that they're liquid eggs which are pre-scrambled. All that's in them is eggs and some kind of preservative. I believe the preservative has corn in it but it is milk, gluten, peanut, and tree nut free. I'm not positive about soy but I think it's soy free. Confirm that the eggs are free of allergens but for the most part they're ok for most people. My 13yo and I can both eat the eggs though my 13yo doesn't like the way they taste so the only way she'll eat eggs at WDW is if the chef cooks them from fresh eggs. I don't taste a difference but little miss fussy-pants does.

Isn't it crazy what they pick up on? Or get picky over? My 2 year old doesn't have any special needs but will only eat yogurt out of a pouch. Not a bowl. It's the same yogurt. I don't get it.

 

[brown1442]

I would LOVE the infinity. We are working to get it. Now that she's crawling the Joey is a pain. I know with the infinity and super mini backpack she could wear it. I'm glad the backpack won't be an issue. I figured they see them all the time.

We just requested the Infinity from our dme (Apria) and they supplied it no problem. If yours doesn't want to make to I'd consider calling your insurance and finding other companies that are covered because theres usually several... Someone will get her the Infinity! Mobility is important and the weigh difference is huge!!

Also, the Infinity fits great into Potterybarn Kids mini backpacks... as long as you burp the bag well. They are super cute and the same size as the super mini We have Superman and Spiderman ones.

 

[Chernandkida]

We just requested the Infinity from our dme (Apria) and they supplied it no problem. If yours doesn't want to make to I'd consider calling your insurance and finding other companies that are covered because theres usually several... Someone will get her the Infinity! Mobility is important and the weigh difference is huge!!

Also, the Infinity fits great into Potterybarn Kids mini backpacks... as long as you burp the bag well. They are super cute and the same size as the super mini We have Superman and Spiderman ones.

We are getting it March 3rd. I'm so excited!