Crohn's Disease Forum » Parents of Kids with IBD » Diet/Cooking for Kids with IBD » Question about traveling with an EN Kiddo


06-22-2012, 02:38 PM   #1
Mom2oneboy
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Question about traveling with an EN Kiddo

We will be going on vacation next month and will be flying. How do I get S's formula and pump to our destination?? The pump is small but it makes me nervous to put it in checked baggage. We have a backpack that it would fit in and could carry it on with us. Will there be any security issues with that? What about his methotrexate? I obviously would want to carry this in my purse. Is this going to be questioned?

I'm curious what other do. Thanks!
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
06-22-2012, 05:32 PM   #2
Dearie
 
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If you go to the website www.tsa.gov you can get information about how to pack medications and other equipment and there is a contact number you can call to ask questions related to bringing medical equipment on the plane.
06-22-2012, 06:52 PM   #3
Tesscorm
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Hi Shelley,

I've wondered about this too... just some ideas I've considered for when we go on vacation...

- did ask Stephen's IBD clinic - they didn't know about specific regulations, however, said they would provide a letter specifying that both the formula and pump were medical necessities.

- perhaps use the 'drinkable' versions of the formula. If I did this, I was going to have Stephen alternate regular formula and new drinkable formula, off and on for a couple of weeks before we left (I don't think there would be a problem 'adjusting' to just a new formula but, just to make sure - wouldn't want to find out I'm wrong while we're away!).

- there are 'gravity' feed bags where you don't require a pump. For these, you adjust the rate of flow by both the height of the bag and by using that little 'wheel thingy' that allows you to open and close the tube. We were given a couple of these bags when we left the hospital but I've never even opened them... but, apparently, you determine the flow rate by how much is 'leaving the bag'. So, for example, if you see that the formula is down by 100 ml after 30 minutes, it's flowing at 200ml/hr - you can now adjust either by the 'thingy' or by raising/lowering the height of the bag. Dusty, help me here if I'm wrong as to how the 'gravity' bags work??? The only consideration here is that you have to have somewhere to hang the bag - with the pump, not such an issue as the pump will draw in the necessary flow regardless of where the bag is positioned.

- Is S having the formula every day? And how long are you going? Asking because when Stephen and I went away last year, it was for only 4 nights. The dietitian told me to skip his two nights 'off' the weeks before and after the vacation and this would make up for his 4 nights away.

But, I'll be interested in hearing if anyone has any experience with this... Have no idea if the pump or formula would be in conflict with any regulations.

You could also ask on the EN forum or look for a thread called Travelling with Crohns - perhaps it's already been discussed???

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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-22-2012, 07:16 PM   #4
DustyKat
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That is basically it Tess!

I just know this has been discussed before but here is a fab forum that discusses taking pumps and supplies on planes...

http://www.passporterboards.com/foru...-feedings.html

Dusty.
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Mum of 2 kids with Crohn's.
06-28-2012, 10:25 PM   #5
Mom2oneboy
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Dearie and Dusty, thanks for the links. Both have great info!

Tess, S does formula every night with the occasional night off for a sleep over. He gets 1000ml at a rate of 115. We just got back from a 6 day vacation at the lake (we drove) but it was a good dry run for us doing the feed outside of our routine. It all went well and we managed without the iv pole. We started off with the pump in the backpack it came with but found setting the pump on a chair and hanging the bag on the closet handle was more convenient. This trip also made me realize that I need to consider how I can transport his probiotic which needs to be refridgerated.

I'm making a list of questions and plan on calling the airline. I'll report back on my findings :-)
06-28-2012, 10:50 PM   #6
DustyKat
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Good to hear all went well on your vacation.

Good luck with the airline!

Dusty.
06-29-2012, 08:07 AM   #7
Tesscorm
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Glad all went well!!

I've added the link to the Travelling with Crohn's thread below. I'd forgotten that I'd once sent the question of travelling with the formula, equipment to our Dept of Health (I'd forgotten as it took them about 4 months to reply!!! Our tax dollars at work!) and I posted the info on the Travelling with Crohn's thread. Most of applies to Canadian travellers/contacts but there was some 'generic' info which you might find helpful???

http://www.crohnsforum.com/showthread.php?t=30925

Let us know what you find out from the airlines...
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