WDW with feeding tube?

[PinkyFisher]

Hi! First post here- my sweet daughter will be 20 months old when we go for a short trip and she is almost 100% feeding tube fed. It’s just a tiny tube that goes into her tummy, under her clothes, but she has to be attached to her feeding backpack (that hangs on her stroller) a lot of the time. We can detach her for rides like The Mad Tea Party and keep it running and attached during longer rides like Small World, but we were wondering if anyone has experience using the DAS system with a feeding tube kid? Three main questions-

1. Can she have her stroller in line? It’s a necessity.

2. Where would they take her stroller and feeding pack during rides she can’t take it on? (Really anxious about losing it.)

3. We’re trying to plan our days (three days), and trying to be realistic about what we can fit in. What’s the DAS like as far as return times? I’ve heard they put you in the fast pass line right then a lot, others say they give you a return time.

We will also have a 4 year old son with us. We’d never dream of taking advantage of Disney- she legitimately can’t wait in line that long, especially in the heat (stage 5 kidney failure, waiting for a transplant, on a lot of meds)- we just want to make the best trip for her and her brother, it’s been hard for them.

Enough of my rambling- thank you guys so much for reading and helping! This is the hubby and the kids

 

[Nemo14]

Sounds like you've overcome a lot of challenges already - and anticipation of possible problems will certainly help things go smoother. I'd suggest you talk to the people at Give Kids the World for suggestions. They have been bringing kids with special needs to WDW for many years, so they might have better advice for you.Their phone number is 407-396-1114 . Good luck, and have an awesome trip!

 

[PinkyFisher]

Sounds like you've overcome a lot of challenges already - and anticipation of possible problems will certainly help things go smoother. I'd suggest you talk to the people at Give Kids the World for suggestions. They have been bringing kids with special needs to WDW for many years, so they might have better advice for you.Their phone number is 407-396-1114 . Good luck, and have an awesome trip!

That’s an amazing suggestion! Thank you!

 

[lazyboy97o]

Others will be able to provide more detailed answers, but you will be able to designate the stroller as a wheelchair so that you can take it with you in “no stroller” areas like queues and restaurants.

Wheelchairs are usually left at the loading area. In cases where load and unload are physically separated, a Cast Member will move it to the unload area so that it there for you. You can always ask about the procedure at each ride.

The wait time for DAS is based on the Stand-By line. If the line is below a certain threshold (like 15 or 20 min, I don’t recall) they will let you in right away. If it is a longer wait your return time will be for the Stand-By time minus the threshold. Unlike FastPass+, the return time does not expire.

 

[PinkyFisher]

Others will be able to provide more detailed answers, but you will be able to designate the stroller as a wheelchair so that you can take it with you in “no stroller” areas like queues and restaurants.

Wheelchairs are usually left at the loading area. In cases where load and unload are physically separated, a Cast Member will move it to the unload area so that it there for you. You can always ask about the procedure at each ride.

The wait time for DAS is based on the Stand-By line. If the line is below a certain threshold (like 15 or 20 min, I don’t recall) they will let you in right away. If it is a longer wait your return time will be for the Stand-By time minus the threshold. Unlike FastPass+, the return time does not expire.

That makes it a lot clearer! Thank you!

 

[Rogue1138]

The wait time for DAS is based on the Stand-By line. If the line is below a certain threshold (like 15 or 20 min, I don’t recall) they will let you in right away. If it is a longer wait your return time will be for the Stand-By time minus the threshold. Unlike FastPass+, the return time does not expire.

My two year old has cystic fibrosis, so we have used the DAS. Two things I will add to this is that our was tied to the little one's Magic Band, so even though we didn't have to buy him a park pass, they used it for purposes of DAS. They scan his first and then ours since we're in his party. Also keep in mind, it can only be used for rides that the one with the DAS can go on. So if they little one can't go on Star Tours, you can't use it for the rest of the family.

 

[PinkyFisher]

My two year old has cystic fibrosis, so we have used the DAS. Two things I will add to this is that our was tied to the little one's Magic Band, so even though we didn't have to buy him a park pass, they used it for purposes of DAS. They scan his first and then ours since we're in his party. Also keep in mind, it can only be used for rides that the one with the DAS can go on. So if they little one can't go on Star Tours, you can't use it for the rest of the family.

Thank you!

 

[HMFan999]

You may also want to contact Disney's Disability Services at (407) 560-2547 or disability.services@disneyparks.com. I'm sure they can provide additional details and answer most of your questions.

 

[PinkyFisher]

You may also want to contact Disney's Disability Services at (407) 560-2547 or disability.services@disneyparks.com. I'm sure they can provide additional details and answer most of your questions.

Thank you so much!

 

[Disorbust]

So I'm a nurse with not that much experience with all the different systems that are out there but I would consider if your using a pump how long your battery source will last.? Also how long is the tube feeding in the "bag" if your gravity feeding? Do you have to worry about spoilage in florida heat and sunlight?

I am use to adults with tube feedings that are done usually overnight. Is that not something they can do with kids?

I work with RNs with much more experience in this area so if you have any questions I would love to forward them on.

 

[BoarderPhreak]

I can't give you any pointers, but I can wish you luck and hope your family gets to enjoy WDW together!

 

[buseegal]

Hi! First post here- my sweet daughter will be 20 months old when we go for a short trip and she is almost 100% feeding tube fed. It’s just a tiny tube that goes into her tummy, under her clothes, but she has to be attached to her feeding backpack (that hangs on her stroller) a lot of the time. We can detach her for rides like The Mad Tea Party and keep it running and attached during longer rides like Small World, but we were wondering if anyone has experience using the DAS system with a feeding tube kid? Three main questions-

1. Can she have her stroller in line? It’s a necessity.

2. Where would they take her stroller and feeding pack during rides she can’t take it on? (Really anxious about losing it.)

3. We’re trying to plan our days (three days), and trying to be realistic about what we can fit in. What’s the DAS like as far as return times? I’ve heard they put you in the fast pass line right then a lot, others say they give you a return time.

We will also have a 4 year old son with us. We’d never dream of taking advantage of Disney- she legitimately can’t wait in line that long, especially in the heat (stage 5 kidney failure, waiting for a transplant, on a lot of meds)- we just want to make the best trip for her and her brother, it’s been hard for them.

Enough of my rambling- thank you guys so much for reading and helping! This is the hubby and the kids♥

to take stroller in line you are looking at a different tag called "stroller as Wheelchair" which is different than a DAS. and when using that tag at rides your stroller will be waiting for you where you exit the ride. without that tag you will not be able to take stroller in line but it a lot easier to get. I do not know any rides where she would be able to take stroller on. one thing to remember if she does get to use wheelchair boat you will not be able to sit beside her as there is no seat beside wheelchair space unlike the way shows are set up. having been on 2 wish trips with grandsons I am not sure how much Give Kids The World can help you as you are not a wish family if I am correct. keep in mind there is a First aid station in each park and they will help you as much as possible. keep them in mind if you have to bring meds/tube food that need to be kept cool. now I am starting to ramble but some helps you

 

[oliviosis]

Hi and welcome! My son has Down syndrome and we've done Disney twice so far. The stroller as a wheelchair tag and the DAS makes Disney our "go to" vacation! I think everyone already answered your questions but I just wanted to add that if she doesn't require a special stroller, I'd recommend renting a double if you don't already have one. It was so helpful that our youngest got to sit in the stroller in line with his brother. One other note is that you need to get the DAS and stroller as a wheelchair tag at Guest Services. We did this at the park on our first park day the last two times because I didn't realize that there is a guest services location at Disney Springs (we go there on arrival day usually). If you have time, I'd recommend getting it before hand, at any of the park entrances or Disney Springs, because our wait time at MK was over 30 minutes the morning of our first park day.

 

[Nsaudra]

You can get stroller as a wheelchair pass at the front. They are really good at disabilities.

 

[DrummerAlly]

My 18 month old has been tube fed on and off since birth (NG tube though, not G tube). Definitely do-able, but I'd suggest you have her stroller designated as a wheel chair. I personally would not separate from the feeding pack at all, I'd take it with you. I'm assuming its larger than the NG tube feeding bags and pumps, but if its not much bigger, I can't see that being an issue. Get a DAS which should issue you a return time in longer wait lines in addition to the stroller as a wheel chair. I'd also bring extra syringes and anything else you use during tube feeding since you want to be prepared just incase something gets dropped or lost.

In some ways, tube feeding (for us at least) was way easier than orally feeding when we traveled. When we went on vacation to a smaller theme park last summer, we made the decision to tube feed 100%, when at home we were about 75% tube, 25% oral. Tube feeding him during the park time gave us some piece of mind that he was fed and hydrated and we knew exactly what his consumption was like. It took a lot of the stress out of traveling for us. Good luck from one tube feeding mom to another!

Edit: Also, make sure to bring anything with you that you need just incase she does any oral feeding (if that's applicable to your situation). When my little guy orally feeds, he needs his liquids thickened and we usually used gel mix to thicken, but that requires hot water and when we were traveling, that wasn't always available and I had to switch to thickening with simply thick. I got lucky a few times that I had both kids of thickener with me, but I wish I had planned better often.

 

[buseegal]

My 18 month old has been tube fed on and off since birth (NG tube though, not G tube). Definitely do-able, but I'd suggest you have her stroller designated as a wheel chair. I personally would not separate from the feeding pack at all, I'd take it with you. I'm assuming its larger than the NG tube feeding bags and pumps, but if its not much bigger, I can't see that being an issue. Get a DAS which should issue you a return time in longer wait lines in addition to the stroller as a wheel chair. I'd also bring extra syringes and anything else you use during tube feeding since you want to be prepared just incase something gets dropped or lost.

In some ways, tube feeding (for us at least) was way easier than orally feeding when we traveled. When we went on vacation to a smaller theme park last summer, we made the decision to tube feed 100%, when at home we were about 75% tube, 25% oral. Tube feeding him during the park time gave us some piece of mind that he was fed and hydrated and we knew exactly what his consumption was like. It took a lot of the stress out of traveling for us. Good luck from one tube feeding mom to another!

Edit: Also, make sure to bring anything with you that you need just incase she does any oral feeding (if that's applicable to your situation). When my little guy orally feeds, he needs his liquids thickened and we usually used gel mix to thicken, but that requires hot water and when we were traveling, that wasn't always available and I had to switch to thickening with simply thick. I got lucky a few times that I had both kids of thickener with me, but I wish I had planned better often.

did you ask at the park for hot water? I know we could not mix for you but could give you cup of hot water. I say most times you could get but there were times when coffee maker was not working. we get hot water from that machine but it is not same spot as the coffee so no transfer of the coffee. we have even warmed water in microwave to warm bottle but could not warm the bottle but could the warmed water to parent to warm bottle. should add we could do this with tap water but not with bottled water as we are not allowed open bottled water and give to someone after opening as this is government rules not park rules that sometime get bypassed with higher ups approval

 

[DrummerAlly]

did you ask at the park for hot water? I know we could not mix for you but could give you cup of hot water. I say most times you could get but there were times when coffee maker was not working. we get hot water from that machine but it is not same spot as the coffee so no transfer of the coffee. we have even warmed water in microwave to warm bottle but could not warm the bottle but could the warmed water to parent to warm bottle. should add we could do this with tap water but not with bottled water as we are not allowed open bottled water and give to someone after opening as this is government rules not park rules that sometime get bypassed with higher ups approval

We were traveling at a different theme park with limited access to hot water, but generally speaking, traveling with kids with feeding tubes or requiring special feeding accommodations, such as thickened fluids, means a lot of planning ahead on the parent's part since most people are familiar with dealing with this kind of stuff and there isn't room for a margin of error.

 

[buseegal]

We were traveling at a different theme park with limited access to hot water, but generally speaking, traveling with kids with feeding tubes or requiring special feeding accommodations, such as thickened fluids, means a lot of planning ahead on the parent's part since most people are familiar with dealing with this kind of stuff and there isn't room for a margin of error.

just adding that the small park I work at if you can use hot tap water at the 2 inside eateries we can get you get that for you we just can not heat the mixed foods for lack of a better term

 

[PinkyFisher]

Sorry I’ve been MIA for a while- you guys are all giving me the BEST advice and tips. Pixie dust to you all!

 

[Nsaudra]

Our son was much older but some of the same issues. Dont feel bad about using the das you are who it was made for.
Our sons doctor changed up feeding just for tge trip. Made things so much easier.