Gastrostomy feeding

[JulieElliot]

We are holidaying from the UK in December. Our son is gastrostomy-fed. Does anybody know if we will be able to obtain Nutrini (or the US equivalent) on a UK prescription?

 

[SueM in MN]

I would probably suggest you try contacting the company that makes the product. I'm quite sure that an equivilent product would be available in the US. The question would be what would the equivalent be?
Either a dietician or the company could probably help you with that.
Another alternative might be to have the product shipped to the hotel in your name. We have never done that, but I have readd about people doing it like that (I'm not sure if any of them were from the UK, but the company should be able to help you with that too).

 

[joannarph]

I am a pharmacist in Missouri and I know that we would not accept a prescription from outside of the country,

 

[Meezers]

We met friends from the UK at WDW and their daughter has a feeding tube.

They arranged to have her exact nutrition shipped to their destination. Somehow was arranged through whatever over on that side of the pond. It was really nice because her food is already pre-mixed and they didn't have to worry about water or anything.

Since I don't know much about ur health plans over there...I am hoping you might be able to set up something similar.

PS...they carried enough for several days...

 

[eternaldisneyfan]

I have 24 hour J tube feeds with a G tube drain. When we recently went on vacation to San Diego, we packed enough food for our whole stay. I had 7 days of food, 8 feeding bags, 16 Farrell bags, lots of gauze and Q-tips, and 4 Mic-Key extensions. I packed a whole bunch of other medical supplies, too. I would suggest just packing what you need and taking it with you.

Have fun!
Christamae

 

[pumpkinboy]

My DS (7) has a Gastrostomy too. In fact he just got his Mic-Key button after our last WDW visit in April, durign which we figured out that he was no longer able to hydrate himself safely. Now it seems cute that he is returning next month with a "Mic-Key" button in place.

Packing the food seem like a lot of weight in pretty limited luggage space on the plane. I think bringing along a few days' or a weeks' supply might be feasible and then perhaps have a medical supply house in Florida deliver some more to your hotel, as SueM in MN suggested. It does not seem that Nutrini is available in the US, though I imagine that a number of similar products would be available on this side of the pond. You may want to investigate the more widely available liquid nourishments here in the US, namely Boost, Pediasure and maybe Nutren, all of which are available over the counter at US pharmacies (though it will cost you); check the calories per millilitre of your Nutrini and see if one of these is close, then run out to the local pharmacy to get a dozen or so once you arrive in your hotel.

The lighter-weight supplies (bags, extensions, swabs, critical medications, etc.) I would suggest you bring with you, preferablyin a carry-on bag so you are sure they don't get misplaced by the airline.

Good luck and have a great trip!

 

[Sue & Co.]

Can't help with possible equivalents but just wanted to comment that although bringing supplies will add to what you have to carry it will not be part of your luggage allowance so will not be taking up part of your 'limited luggage space'. Medical supplies in a separate bag are not counted towards your allowance either for checked baggage or hand baggage and the airline has to allow it.

Although if you can find an equivalent it may be easier to take a little for emergencies and buy in once you have arrived.

Sue

 

[JulieElliot]

Thanks for all the replies. We will be taking a small supply of Nutrini with us but as it's in glass bottles it's not practical to take 2 weeks supply. We've looked at Pediasure/Nutren as alternatives and these seem ideal. Do you know if they will be available at pharmacies around WDW?

Thanks again.

 

[clkelley]

Oh absolutely. As a matter of fact, most grocery stores will carry PediaSure at lesser cost than a pharmacy/drug store.

Publix and Wal-Mart SuperCenter are the major chains in Orlando that should carry that stuff.

Carol

 

[SueM in MN]

Oh absolutely. As a matter of fact, most grocery stores will carry PediaSure at lesser cost than a pharmacy/drug store.

Publix and Wal-Mart SuperCenter are the major chains in Orlando that should carry that stuff.

Carol

The Pediasure that you will find at Walmart and Publix is the oral supplement type of Pediasure, not the enteral (tube) feeding type.

Here's the website for
the enteral Pediasure from Ross Labs (the company that makes Pediasure). There is a "Contact Us" link on that page. You should be able to get information on where/how to get the product if you contact them. There is also a store locator and a phone number on that site. I think you would probably do better with email since you are in the UK.
Ross is a pretty common brand of tube feeding in the US, so the company should have someone you can get it from in the Orlando area.

Nutren is made by Nestle. Here's a link to the US part of the Nestle website including Nutren. That page also has a "Contact Us" link. I don't know if Nestle tube fedding as common in that part of the US or not. In my area, Ross is more common.

Hoepfully, you can get it straightened out. I would not want to carry a lot of glass bottles with me if I could help it!

 

[Nordicpollan]

Hi
We are also from the UK. We travelled last year with our son who is tube fed.

We took it all with us as our son reacts badly to a change in feed.

We rang our home supplier who sent a hard box on wheels, that I managed to get 3weeks worth of feed into as well as all the giving sets and there was a bit of space for some of his pads too. The real bonus was a nice big empty box ready to be filled on the way home!!!
We carried the feed pump with us in our ruckscak and with an adapter it worked well. Our sons feed is Nutrison Energy which comes in 1 litre soft bags which travelled well. The airline also gave us extra luggage allowance to cover medical suplies.

Any other info you want just ask, I did say last year before we went never again as it felt like an army manouvere, however it went really smoothly with no hassles at all and we have booked to do it all over again next year after Ds has had loads of surgery latter this year.

Karen

 

[joanchris]

I agree with the poster who mentioned that changing your child's formula, though it seems similar, may not be a good idea (especially on vacation!). We're still trying to get GI issues worked out here after my daughter's formula maker changed her formula's ingredients, months ago. I would do my best to try to get your formula shipped here as is, possibly the company that sends it to you (or pharmacy) could arrange for shipping it to your hotel?

We are going in 30 days and just this morning I was putting things aside (one case of formula, diapers etc) for shipping to the hotel. We plan on bringing 2-3 days worth with us, but dragging extra stuff (the formula is heavy!) seemed silly. I'm sure it will be costly to ship it (especially from the UK) but it should be worth it.

I plan on shipping it well before I leave, so I can ensure it's THERE, at our hotel, before I leave home. I plan on calling the hotel directly before I ship, to see how I should ship it (which carrier is best for them) and exactly what needs to be on the box.
Good luck
Joan

 

[MommytoMJM]

Another G-tuber here...MJ has been tube fed since she was 15 months old. She is Highly allergic to corn and it took us years to find a formula she could eat. In the parks she isn't able to stay hydrated, so although she only is on feeds at night, when we are at the parks during the warm season we have to carry her pump and put water in the bag. Her new wheelchair will have an IV pole on it for this purpose, I never realized there were so many of us at the parks! I love that MJ's button is called a Mic-Key too

 

[JulieElliot]

Thanks for all your help. We can get the Nutrini in soft bags, rather than the bottles so we've decided to pack it and take it with us. Thanks for letting us know about the extra luggage allowance for medical suppplies, and the US alternatives just in case.

We have 4 boys who are adopted - 2 with Down's Syndrome and 2 CP. We are in WDW 3rd - 17th December this year. Are there any other families with disabled kids there at the same time?

 

[Poohs Pal]

My DD works in the orthotics department of our local hospital, prior to that she worked in thier DME department. I don't know if this would work for you since you are in the UK but as part of her job she would contact DME's for people that were going on vacation and arrange for them to get thier supplies. Maybe your DME would could do this for you. They could contact a DME in Orlando and get your supplies for you. It was great when she worked in the DME because all I had to do was call her and get DS supplies. Now she works in the same office where he gets his AFO'S . We will be at SSR 12/03-15th. First time DS has been to disney since his accident. Maybe we will see you there. DS will be trying out his new chair that allows him to sit or stand. Susan

 

[Nordicpollan]

Hi Again

I also agree with MommytoMJM about the plus side of a G-tube is being able to give extra fluid. Until recently keeping DS full of fluid wasn't a problem as he drank really well with a straw or a sloppy cup but now thats not too good so we give him several bolus drinks during the day. We found this worked better for him rather than having the pump on. Whenever we stop for a drink DS has 60 to 100ml of cooled boiled water. He is always offered a drink and if he has one then its a bonus

Karen

 

[MommytoMJM]

We have 4 boys who are adopted - 2 with Down's Syndrome and 2 CP. We are in WDW 3rd - 17th December this year. Are there any other families with disabled kids there at the same time?

We are there EVERY weekend, so if you are there over a weekend you will see us! MJ is adopted and has a variety of stuff going on, if you search my username for threads started by me you will see our stories. We'd love to meet up!

 

[Ali and boyz]

Hi
We are also from the UK. We travelled last year with our son who is tube fed.

We took it all with us as our son reacts badly to a change in feed.

We rang our home supplier who sent a hard box on wheels, that I managed to get 3weeks worth of feed into as well as all the giving sets and there was a bit of space for some of his pads too. The real bonus was a nice big empty box ready to be filled on the way home!!!
We carried the feed pump with us in our ruckscak and with an adapter it worked well. Our sons feed is Nutrison Energy which comes in 1 litre soft bags which travelled well. The airline also gave us extra luggage allowance to cover medical suplies.

Karen

Karen can I ask you if you had to provide a total weight for the extra medical supplies. this year we were asked when we flew with MT for a weight which I picked out of my my head as this was the first time we had flew with our DS but when we actually put all the medical stuff together it was way heavier. How did you do it

thanks ,
Ali

 

[Nordicpollan]

Hi Ali

We had fun and games weighing things!!
At first we were flying with First Choice and they offered an extra 20kg for Stus bits, which on the phone at the time seemed fine then I started to weight things like his bags of feed and each one was 1kg and we had a 3 week holiday booked so I got back to them and asked for 35kg which they agreeded to and sent me a letter to confirm the extra weight at book in.Our normal luggage was 20kg per person.

In the end our holiday was delayed by the hurricanes so had to change to United airways and they said they had no problem carrying his supplies and it didn't matter how heavy it was they would not charge him extra and as it was a scheduled flight we already had 64kg per person, not even I could fill that many suitcases!!!

All airways have always carried his very heavy manual wheelchair with no quibbles. We take it right to the aircraft door I then carry him on and Hubby watches to make sure that they carry down and put it on the plane and when we arrive they then bring it back to the door when everyone has left the plane.

Any more questions ask away


Karen

 

[Ali and boyz]

thanks Karen

I said 23 kgs this year (just hit a figure as I hadn't a clue) and everything was fine on the way out but on the way back at check-in they wouldn't even look at the letter we had okaying this they just kept going on about being overweight but they would let us off this time I have to get back to TA in March so will start weighing everything now as I use stuff and do a list ! funny thing was when we booked the guy from MT couldn't have been nicer but seems to be a breakdown from there to airport