anyone with info on tube feeding in the parks

[specialkidsmom]

I am new here and I am enjoying reading everyone's questions and responses. I have a DS (4) who has a g-tube. We mainly use it for administering meds but also use it to supliment his feedings. I was wondering what accomidations there are in the parks for giving meds and possible fast suppliments. I dont really want to do this out in the open with "gawkers" and a bathroom is accecptable either. Can anyone help with ideas? Also, even though he does eat and drink orally, if we are not at home he most of the time will not eat like he shld. Orally he will only drink from a bottle and then only pediasure. Due to poor muscle control he can not tolerate thin liquids as in water or juice.( he has CP. I think I forgot to mention that) I was thinking that to keep him hydrated while in the June heat I would use pedialyte thru the tube. What has others done and where is the best place to administer all this while in the parks.

 

[SueM in MN]

Yes.
You can either go to First Aid or to the Baby Care Center. Each park has those and they are well marked on the park maps.
First Aid has private rooms or individual cubicles with curtains that you can use. If you need to store some supplies, First Aid can do that for you too.

 

[angelbearmom]

Like Sue said, the First Aid center is good for doing meds and for changes too. When I was there 4 years ago my son was just plain tired of sitting and needed a break (age 12 at the time,muscular dystrophy with severe cognitive delay, autistic tendencies) and they were really good (at MK) and let me just let him lie down for half an hour or so. I've also used them just when he needs a brief change as he's too big for change tables and he needs the privacy any ways.

I know others who have used the first aid centers in other parks and again have had no problems doing this.

Your idea of pedialyte is likely a good one. The first year we went my son was constantly eyeing my water bottles so I just let him drink what he wanted even though he choked a bit. The 2nd year I used gator aide but he wasn't as thirstly-it was 2 weeks later in Oct. and not as hot. This year it will be hot again (2nd week of Sept) so I'll likely just try to get extra water in him and will let him drink if he wants to.

Have fun.

 

[dclfun]

In the summer I usually use my pump with water all day long on a slow feed since it's necessary for everyone to hydrate more often- Pedialyte is a great idea. There are backpack pumps for kids if you decide to use that method or if, like myself, he's in a w/c the pump can be attached there. I wouldn't worry too much about gawkers. I've often seen people giving meds or meals via tube feeding in the parks- out in the open wherever it's convenient for them at the moment. Dining/drinking in the bathroom is kind of gross for anyone. Sometimes getting to First Aid/Baby Care center isn't convenenient for where you are in the park although First Aid does have refrigerators if you want to store any of his feedings and supplies during the day.---Kathy

 

[rolltide13]

We have a DS(5) with a chromosome disorder and he cannot eat solids at all. When we first when to DW we were very worried about dehydration, but we used the BabyCare and FirstAid stations and were very successful with pediasure. They have quiet areas and private rooms where you can stop, relax, cool off, have your child drink or use your pump, in peace and quiet and then resume your day.

These rooms have been invaluable to us in making sure that our son stays cool, calm and happy for his (and our) vacations.

The nurses are very friendly and have been always great to us. The FirstAid stations are the best. They are very easy to find on the park maps.

Steve

 

[special-angel]

My daughter would have freaked if we sat in first aid for her 45 min tube feed and missed all the fun !She got all of her feeds & water while enjoying the parks .The only thing visible is the feeding bag hanging on her wheelchair handle . Who cares what people think .Our kids have to stay hydrated too .But we did use first aid alot for diaper changes .

 

[specialkidsmom]

Thank you to everyone who responded. Great info. Also it is very nice to know that Disney is very accomidating to our "little ones" with special needs.(little ones of all ages). I believe that we will be getting alot of use out of the First Aid.

 

[shoes99]

My adult sister used the first aid stations in each park to clean her "button". She had a lot of discharge due to a malfunctioning system. She was very comfortable and said the staff was great.
Last Friday she had her tubes replaced and hopes to not have any more problems. She does her feedings, hydrating in the evenings most days.
She was afraid to fly with her pumps, hydrating water and syringes, but it was fine. She flew on US Airways.

 

[angelbearmom]

She was afraid to fly with her pumps, hydrating water and syringes, but it was fine. She flew on US Airways.

I've flown with 2 different children who have feeding pumps. The only problem I've ever had is with leaving the pump hooked up during take off and landings. As my son has a jtube and is on a continous feed with no time for breaks I just get a letter from his dr stating it has to be left on. I usually just put the pump on the floor between my feet (we usually sit in bulk head seating). As this is our first flight since the liquids ban I'm not sure if we'll run into problems with bags of pre mixed formula but will also have a letter from his dr stating we need to have these with us as there's no way I can mix formula and refill bags on the air plane. I've never had trouble traveling with syringes (no needles) either although had diabetes testing supplies on one trip, again with no problems.

 

[SueM in MN]

As this is our first flight since the liquids ban I'm not sure if we'll run into problems with bags of pre mixed formula but will also have a letter from his dr stating we need to have these with us as there's no way I can mix formula and refill bags on the air plane. I've never had trouble traveling with syringes (no needles) either although had diabetes testing supplies on one trip, again with no problems.

I see that you are starting out in Canada and I have no idea what the rules are in Canada regarding liquids on the plane.
But, for the US, there are links in the disABILITIES FAQs thread about air travel that might be helpful to you.

 

[angelbearmom]

Thanks. I'm actually flying out of Seattle. The rules are the same here as in the US for liquids I think. I know we had trouble a couple of years ago with bringing a large container of formula on a plane. That's why we're going with the bags of formula. I'll check out the faq. I think it really depends on the airport. A friend I was traveling with out of Bellingham last year had trouble with taking her daughter's meds on the plane even though they were all clearly labelled. The return trip from Las Vegas she was given no problems with the same meds.

 

[SueM in MN]

here's a picture of a First Aid room. can't remember for sure, but think it's MK.
not all have 2 beds and some are set up like doctor's office exam rooms, with an exam type table and a door.

 

[twinmum]

Hello - a fellow Canadian here. I know you said you were travelling out of Seattle, but I think this applies anywhere. We had no problem with liquids,as long as they were labelled, and I also brought a physian's note (basically a prescription) indicating that the liquids (Resource just for Kids) were being given under doctor's orders. Leaving Canada, no one needed the doctor's note (after all they did "frisk" him in his wheelchair and so they knew he had a g-tube). Leaving from Orlando, a cursory nod was given to the prescription inside the bag holding the Resource.

 

[rillsung]

I am new here and I am enjoying reading everyone's questions and responses. I have a DS (4) who has a g-tube. We mainly use it for administering meds but also use it to supliment his feedings. I was wondering what accomidations there are in the parks for giving meds and possible fast suppliments. I dont really want to do this out in the open with "gawkers" and a bathroom is accecptable either. Can anyone help with ideas? Also, even though he does eat and drink orally, if we are not at home he most of the time will not eat like he shld. Orally he will only drink from a bottle and then only pediasure. Due to poor muscle control he can not tolerate thin liquids as in water or juice.( he has CP. I think I forgot to mention that) I was thinking that to keep him hydrated while in the June heat I would use pedialyte thru the tube. What has others done and where is the best place to administer all this while in the parks.

Sydney was 1yr old when we went last time. When it was nice out, we'd do the feeding in a nice corner outside. We really didn't have many people gawk or even notice. We had her stroller and would just face her towards us and discretly feed her. We also used the baby centers a LOT. You should get a "Stroller is a Wheelchair" tag and you can take it into the baby centers.