Traveling w/ a Nebulizer??

[nottelling]

We are leaving next month to Disney My DD has CF (Cystic Fibrosis) and was put on medication the other month that requires a Nebulizer. I am not sure how to travel with this though .... It did not come with any type of bag so I have nothing to put it in. It is not that large (compaired to a vest that she wears (that we are not bringing)) but it is not small enough to just easily put in another carry on. Does anyone have any suggestions? She also is on medication that needs to be refrigerated, do I put that in some type of cooler??? Please, I would love to hear any suggestions.

 

[NeverSayNever]

When I have travelled with our neub we always took it as carryon... I was concerned about it getting lost with luggage and also was not sure if w would need it on the plane or not. I did have to inform the airlines in advance and we also got stopped at security for a search... perhaps the battery triggered something?

I can say, though, that we were fortunate enough to have a travel size one and just left our regular one home. You may want to seee if your insurance will also cover a travel/smaller size one. (we used to take it with us even if shopping or extended day out to visit family etc) The only disadvantage with the travel one is that the battery did have to be charged frequently. As an aside I also felt good about having the travle/battery one in case of a power outage at home... I alwyas keptthe battery charged jsut in case.

Sorry, I don't have any suggestions on the refrig meds... perhaps the airlines could offer some suggestions?

Hope this helps.

Best,

 

[pugdog]

You do not have to inform the airline ahead of time that you are bringing it. Bring it as a carry on so it won't get lost or broke. Since it is a medical device it does not count toward your carry on allowance.
As far as it goes for your pulmozyme go to the drugstore and buy a cooler that can hold insulin and you can put it in there. TSA will let you through with it just tell them as you go through. You can go here to see the TSA info for you.http://www.tsa.dhs.gov/travelers/airtravel/specialneeds/index.shtm

 

[SBubba18]

When I travel with my nebulizer, I am always stoped at security for my bag to be tested. I bring it as a carry on so I know it wont get lost or anything. Mine fits in a small bag with the rest of my medications. I never had to inform the airline before traveling.

 

[cupcake]

I pull out my nebulizer zipped up in its case and put it in the bin with my sheets of medication ampules, which I have in a gallon ziplock baggie. The trick for me to not getting stopped is to pull everything out of my bag and put it in a bin. The meds have never been an issue, too, even though they are just loose sheets of clear liquid filled ampules. TSA must know what this stuff looks like, so you should be fine.

Cupcake

 

[Charleyann]

For your machine which doesn't have a bag, just buy a zip up lunch box. (Soft cover) most nebulizers machine will fit in those. You can put medications in this as well to keep them cool.

Our Cf clinic always writes out a letter for security listing my son's medication in case there are any questions. Enjoy your trip!

Charleyann

 

[Momof2wCF]

Thanks nottelling for posting this question!! I had no idea there were so many CF families on here! When you get back, can you please post any tips you think would help for going to WDW with CF? (...or maybe someone who has already been so you can get input too?)
My kids both have g-tubes, get night feeds, use nebulizers and the vest. My (9 yo) daughter is getting a MaW trip in October.
The tip on the CF center writing an explanation of meds is great, I will talk to our team tomorrow!!
BTW, we did fly to DL in Feb.. the enteral pumps triggered a search of our checked bags, so I would assume the neb would too.. I wished I'd packed our undies in ziploc baggies, cause... someone else went through our stuff! Eww!

 

[Cheshire Figment]

Hi Momof2wCF and to disABILTIES!

I would strongly advise not putting any medical equipment or medicines in checked luggage. The airlines must allow you to carry these items on, and this is always above your normal carry-on limits.

 

[Momof2wCF]

Apologies to nottelling, I don't mean to hijack your post Just a note and question to Cheshire Figment. (might be relevant to you?)
I have two enteral pumps, a nebulizer, neb tubing and misc meds for it, 70 cans of enteral formula, and 14 enteral bags. (besides regular meds)These alone will take up at least two suitcases. You really don't think I should check it? Isn't there some sort of limit even if it is medically necessary? Now I'm worried!! Please move this post if you think I shouldn't have put it here. Thanks!!

 

[chezza]

Hi, I have cf, and have found that a frio bag which I bought several years ago, for keeping my pulmozyme cool is just the thing you would find useful. It is really for diabetic use, but as I use insulin now too, it doubles up.


Frio bag.


It has tiny crystals in, you soak it in iced water for 10 mins & this turns the crystals to jelly and is cold to the touch, it stays cold for 2 days I believe.

I just googled it as I live in England & bought my direct from the company, but found a link on Amazon.com, several sights came up, but this one had a picture for you to see.

Also has another use too during your stay away from home, if you get sunstroke or you drink too much Southern Comfort (lol), you can place it on your forehead to keep you cool.

We are due to fly out to orlando on this saturday (8th sept), I hope I don't get stopped at customs as I put all my tabs in small sealable bags for the 3 times a day (meal times) when I take them. I am taking 1 each of the original packaging & have stuck a copy of each label on a sheet of paper. It's impossible to keep them all in their original packaging, when you are at about 50 tabs per day. I have got a letter from my doctors & a list of all medication too.

I have an eflow neb, they are great, run on batteries or electric, they are the same size as a c.d. but a little fatter. apart from being very small they are completely silent. They are expensive, mine cost 450 pounds (about 800 dollars), but worth every penny, it has given me so much freedom, especially when you neb 3 times a day. I do Pulmozyme, Atrovent & ventolin in mine.

Finally I always pack all my drugs in cabin bags, just in case your case gets lost.

Have a great holiday.


Chez

 

[pugdog]

Apologies to nottelling, I don't mean to hijack your post Just a note and question to Cheshire Figment. (might be relevant to you?)
I have two enteral pumps, a nebulizer, neb tubing and misc meds for it, 70 cans of enteral formula, and 14 enteral bags. (besides regular meds)These alone will take up at least two suitcases. You really don't think I should check it? Isn't there some sort of limit even if it is medically necessary? Now I'm worried!! Please move this post if you think I should haven't put it here. Thanks!!

Hey MOM
One thing that we do is only take enough for a couple of days with us on the plane. The rest of it we have shipped down to the resort so we don't have to carry it. You can either ship it yourself or have your DME company ship it down for you.

 

[mzicuis]

My daughter is 3 1/2 and has CF too adn we are going to disney sept 18 - 23. Someone we know gave us the trip for her!! We will be bringing a neb too adn I was going to thow it in our check-in luggage so I am glad you asked this!!

 

[Kate70410]

Hi, I just wanted to give what I did when we went in July. I have bad asthma and must always bring a neb for bad days. I put my neb with the tubing and meds inside and packed it in my carry on. I've only been searched once, back in March and that was just because the cord set off the alarm thing. They didn't think another thing about it once they knew what it was though.


Also, as far as carrying all the enteral feeding supplies and everything. My wife and I both have multiple medical issues and we shipped a big box to ourselves for our trip and it worked out great. We shipped it about a week and a half before we left so we could check to make sure it arrived in the hotel before we even left here. If anything happened, we would carry it all with us, but there wasn't any need for that. I would recommend shipping stuff up and back to make your plane ride easier.

Good luck and have fun!!

 

[SueM in MN]

Hey MOM
One thing that we do is only take enough for a couple of days with us on the plane. The rest of it we have shipped down to the resort so we don't have to carry it. You can either ship it yourself or have your DME company ship it down for you.

That's what I would suggest for all the things you have.
That is a lot of stuff to get to the airport and from your car to the check in point and then have to transport to the resort, so there is more to think about than just whether the airline would transport it.

My DD doesn't have as much 'medical stuff' as you have, but if I was going to do some things carry on and either send some as baggage or ship it, I would use this criteria:
1) Is it fragile or does it have any fragile parts?
2) Do we need it every day?
3) Would it be hard to get a replacement?
4) Might it take a long time to get a replacement?

For any item that I could answer yes, I would carry on. Just make sure you have enough of the 'consumable' replies to last a few days.

 

[nottelling]

I am so happy that I asked this. I have gotten a lot of nice tips on how to make our trip to Disney smoother! Thank you all so much!

 

[Momof2wCF]

Nottelling, We are really happy you asked it too!!
Lots of good info!

 

[pugdog]

For us here in MN. It takes about 5 days for ground on either FedEX or UPS. You can just go to their websites and they will give you a price and time to ship it to WDW.

 

[disneymarie]

Apologies to nottelling, I don't mean to hijack your post Just a note and question to Cheshire Figment. (might be relevant to you?)
I have two enteral pumps, a nebulizer, neb tubing and misc meds for it, 70 cans of enteral formula, and 14 enteral bags. (besides regular meds)These alone will take up at least two suitcases. You really don't think I should check it? Isn't there some sort of limit even if it is medically necessary? Now I'm worried!! Please move this post if you think I shouldn't have put it here. Thanks!!

Can't you take these in roll on bags and tag as fragile medical equipment, check it Plane Side.
Then it will go under the plane as you board, won;t get lost and available as you exit.
I do that with my rollator, the strollers, a bag of change of clothes and few toiletries.
dianne

 

[MisMikiNikiLynne]

We always travel with suction, nebulizer, feeding pump and sat machines. It takes us forever to get through security as I have to open up all the cases of the machines and then put everything back together. We ALWAYS carry everything on with us as I am afraid that that is the suitcase they will loose. I also carry all meds, and enough food and supplies for at least 24 hours. DD is in a wheelchair and of course that is a nightmare to get through security also!

 

[SereneOne]

Thanks nottelling for posting this question!! I had no idea there were so many CF families on here! When you get back, can you please post any tips you think would help for going to WDW with CF? (...or maybe someone who has already been so you can get input too?)
My kids both have g-tubes, get night feeds, use nebulizers and the vest. My (9 yo) daughter is getting a MaW trip in October.
The tip on the CF center writing an explanation of meds is great, I will talk to our team tomorrow!!
BTW, we did fly to DL in Feb.. the enteral pumps triggered a search of our checked bags, so I would assume the neb would too.. I wished I'd packed our undies in ziploc baggies, cause... someone else went through our stuff! Eww!

My daughter has a feeding tube and uses a nebulizer also, but she has VATERS Association and Reactive Airway Disease.