Son has CF and going to WDW for first time!

[AKADrea]

My DS, who will be 1 when we travel, has CF. I'm definitely bringing his nebulizer and vest (hoping it'll fit as a carry-on, there's NO WAY I'm checking that thing!)

Is there any advice from you seasoned travelers??

I've never had to give him salt before - is this something I should consider when we're out in the heat?

 

[Cheshire Figment]

Hi and to disABILITIES!

I would suggest you start off by clicking on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. Preobably Post #3 and #6 would be the best initial assistance for you.

Or, if you want an easier route, click on the link in my signature.

One important thing concerning the airlines. Any medical equipment or supplies must be allowed and do not count against any carryon limitations. You might want to go to your airline's web site and look for "special services" or "disabled travellers" and print some of the pages which may apply.

 

[SueM in MN]

yeah, I feel like a pack horse coming on the airplane with all of DD's carryon medical stuff and she doesn't even have that much.
As long as you can get it into a bag that fits into the overhead compartment, under your seat or in the plane's closet (if it has one), you are good to go.

Once you get to the parks, keep in mind that each park has a First Aid station. You can store your child's vest there and they have cots in either cubicles with curtains or actual exam type rooms with doors where you could do your child's vest treatment or postural drainage treatments. They will have pillows you can use for positioning if needed.

As Cheshire Figment mentioned, the disABILITIES FAQs thread should be helpful to you. There is a link in post #3 of that thread that was hints about CF.

 

[AKADrea]

thanks for the help everyone! This will be our first time flying with his equipment. We made an 8 hour drive for a wedding a few weeks ago and boy was the car packed to the hilt, LOL!

hopefully we'll be on an "off" month for his TOBI, so that'll save us an hour a day!

I had no clue about the medical equipment not counting I was going to have to not include a carryon for DD, so that helps a lot. I just DON'T want to check it with the way they handle baggage! I didn't see a LOT of info on the sticky, but I'll keep reading.

 

[pumpkinboy]

My DS, who will be 1 when we travel, has CF. I'm definitely bringing his nebulizer and vest (hoping it'll fit as a carry-on, there's NO WAY I'm checking that thing!)

Is there any advice from you seasoned travelers??

I've never had to give him salt before - is this something I should consider when we're out in the heat?

While I am not experienced in CF issues, our DS also has "The Vest" for his chest percussion needs (has CP, non-mobile, does not move torso).

We have checked "The Vest" just fine on our last two trips (Feb and Apr) on Delta, AirTran and jetBlue. Now aside from the fact that "The Vest" costs the same as a new Honda Civic, we got the travel insurance and just checked it; it was just too darn heavy to take it as carry-on what with all of DS's other stuff (much of which is also heavy). Perhaps a Baby-sized Vest is smaller, or you have fewer other things to carry; carry-on might be practicable. As a medical device, you may be able to bring it with you and just "gate check" it the way we do with DS's wheelchair.

I think checking out the airline website makes sense, just to familiarize yourself with the policies.

Good luck!

 

[goofydebi]

my son is 20, has cf, we live in florida (very hot today) and he has never taken any salt supplements. we made our first trip to wdw when he was 18 months, hardest part was carrying all the jars of bananas that we needed for him to take his enzymes in. probably took 6-8 jars in the park just for that. as for the vest, the one he has is so big (one of the old ones) it's bigger than a large suitcase and we drive so can't help you there. my best advice is take enough pills. i think it was our last trip that i learned that lesson, you would think 300-400 pills would be enough, didn't even think about him taking 50 a day, so one bottle only lasted 2 days. whew had to watch how many times we ate that trip. now his pills come in bottles of 500 and he takes less per meal (7) so we will just take 2 bottles when we go in 3 weeks woo hoo. good luck to you and enjoy your trip.

 

[ebony]

I have a 19 year old Son with CF. We have travelled many times to Florida from the UK.
We carry all medications as handluggage, nebulisers now are so tiny so they are easy to take as well. He doesnt use a vest, just has regular physio, and does his breathing techniques.
We have had some holidays when he has been on IV'S, again possible, just lots more meds to carry. He has a port so we just put a new needle in when we get there.
First aid stations are very good when you need somewhere private to administer meds or treatments.

Feel free to ask any questions if you want.

Just to add we used to give him salt tabs when he was small, but we now just remind him to salt his meals well.

 

[AKADrea]

thanks everyone! Traveling with a CF kid definitely adds a new element! I thought it was bad with just a "healthy" child, LOL

Our vest is about the size of a small suitcase - and I think it would fit for carryon - I just can't imagine checking a $16,000 piece of equipment, and if anything happened to it, we'd be without for our vacation - that's daunting!


I can imagine we'll go through a lot of enzymes as well - as he'll probably be nursing more to keep hydrated, whew!

I'm so happy to hear of your older children still going strong and going to WDW! Hopefully mine will be able to stay healthy and grow to a nice old age!

 

[rcq925]

We are flying on June 4th with our daughter, Hayley, who has CF. We are taking her vest as a carryon on the plane. I have been told by several people with CF that there should be no problem taking it on the plane. No way am I checking a $16,000 piece of medical equipment! We are taking all of her meds, nebulizer and vest as carry ons and I have been told that her medical equipment does not count as a carry on either. I have e-mailed back and forth with the airline several times (Northwest) and also got a letter from her doctor stating all of her meds and the fact that she needs to bring the vest with her on the plane and have it with her.

Have fun on your trip!!

Becky

 

[AKADrea]

Thanks Becky!


I'm wondering what we'll do with our carryons the day we leave - I mean, will we have to haul the vest around with us around the parks since we're using ME? Would they keep it in a first aid station?

 

[SueM in MN]

Thanks Becky!


I'm wondering what we'll do with our carryons the day we leave - I mean, will we have to haul the vest around with us around the parks since we're using ME? Would they keep it in a first aid station?

They will keep it in First Aid for you and they also have nice rooms (cool, quite and calm) where you can use it.
If you prefer to store it somewhere else, you can also store it in a locker.

There are lockers and a First Aid station in each park.

 

[Charleyann]

You guys in the States are so lucky insurance companies carry the cost of the vest. The Canadian insurance companies will not pay for the vest. How nice you can put it on and give your arms a breaK. Most of us can't afford that luxury!
Charleyann

 

[Chuck-PA]

We have a son who is 20 with CF.
In repsonse to your question regarding salt intake, yes, I would increase it during the hot weather months. Otherwise, he may get a white line around his face when he sweats.

Some easy ways to do this:
pretzels, or any snacks with salt that he may be able to suck on besides salting his meals
drinks high in salt are: gatorade or powerade (powerade is sold at Disney)

 

[AKADrea]

You guys in the States are so lucky insurance companies carry the cost of the vest. The Canadian insurance companies will not pay for the vest. How nice you can put it on and give your arms a breaK. Most of us can't afford that luxury!
Charleyann

wow! It's amazing how things are different - it seems to be becoming the standard of care here! My son got his when he was 6 months old! I'm told that he's the youngest as far as our representative knew We'll still be paying about $3000 out of pocket, but it's better than $16,000

But we also pay for insurance, and other meds (TOBI and pulmozyme aren't cheap)

Health insurance is so tricky! I'm sorry that you don't have the vest so accessible to you



Chuck - thanks for the info on the salt - it's like pulling teeth to get him to eat right now! I might have to sneak some salt into his food somehow or just dump some in his mouth and wash it down, LOL!

 

[Charleyann]

wow! It's amazing how things are different - it seems to be becoming the standard of care here! My son got his when he was 6 months old! I'm told that he's the youngest as far as our representative knew We'll still be paying about $3000 out of pocket, but it's better than $16,000

But we also pay for insurance, and other meds (TOBI and pulmozyme aren't cheap)

Health insurance is so tricky! I'm sorry that you don't have the vest so accessible to you



Chuck - thanks for the info on the salt - it's like pulling teeth to get him to eat right now! I might have to sneak some salt into his food somehow or just dump some in his mouth and wash it down, LOL!

We don't have to pay for clinic visits or hospital stays and or meds are covered under a CF plan (In NB). So I guess thats better then worrying about hospital bill and drug coverage! I spmetimes forget you guys/gals do't have universal health care.....

Charleyann

 

[ebony]

In the UK we have the National Health Service, so Hospital visits and clinics are covered. We have to pay for the prescribed meds on a set fee per item or a annual one off payment fee, which covers all meds for the year.
All equipment like tipping tables, nebulisers, we have to buy. It is very rare that anyone with Cf to be admitted to hospital for IV's, we are taught when the child is about 3 to do intravenous drugs at home, for the 3 week course.
How does this work in your countries ?.

Nobody with CF that I know has a vest for physio.
Is it not possible for you to do physio by percussion whilst you are on holiday, and then you would not have to take the vest ?. There are usually plenty of pillows in the room, that you can use to tip them enough.

I find it very interesting, to find out how the treatment of our kids vary by different countries.

 

[SueM in MN]

For the salt question, I would ask your child's doctors if, what, how much and how often to give. Since he's only going to be 12 months old when you go, some of the salt supplements (like Gatoraid) may be too high of a concentration for someone so small. Plus, they are high in sugar and have a lot of other electrolytes besides just salt.

Just in case people are curious for more information about the vest, here's a link to the website. I don't know if there are more companies that make perrcussion vests, this the one I am familiar with. Because the vest was developed in St. Paul, MN in the late 1980s, it was used here earlier than most other places. Besides CF, it is used basically anyone who has trouble clearing their airways, certain patients with CP, COPD, spinal chord injuries, MD, etc.
It is really a very nice tool for doing percussion.

 

[AKADrea]

In the UK we have the National Health Service, so Hospital visits and clinics are covered. We have to pay for the prescribed meds on a set fee per item or a annual one off payment fee, which covers all meds for the year.
All equipment like tipping tables, nebulisers, we have to buy. It is very rare that anyone with Cf to be admitted to hospital for IV's, we are taught when the child is about 3 to do intravenous drugs at home, for the 3 week course.
How does this work in your countries ?.

Nobody with CF that I know has a vest for physio.
Is it not possible for you to do physio by percussion whilst you are on holiday, and then you would not have to take the vest ?. There are usually plenty of pillows in the room, that you can use to tip them enough.

I find it very interesting, to find out how the treatment of our kids vary by different countries.

Wow, do you start the IV's? We did most of DS's course of IV therapy at home with a PICC line last year. But he was admitted for a few days to get the PICC line and adjust his dosage.


I feel like we don't do a great job at manual therapy, since we started young, they haven't taught us the different positions. Maybe I will try to ask about this at our next clinic and get some better instructions and we can leave the vest at home



Sue - I will ask at our next visit - I mentioned it last time since we're going to the beach next month. They said just to try and salt his foods.

We are actually using a newer company for our vest - Respirtech. It's actually been very nice! I feel like it does such a better job than what we can do manually.

 

[SueM in MN]

We are actually using a newer company for our vest - Respirtech. It's actually been very nice! I feel like it does such a better job than what we can do manually.

Interesting!
I see that Respiritech is based out of St. Paul.
The company I linked to in the earlier thread started in St. Paul and then was sold to a medical equipment company called Hill-Rom. I wonder if Respiratech was formed by people who had been part of that company before it was sold?

The 2 vests look to be pretty similar.

 

[AKADrea]

that is funny! Cool though!

Hill-Rom has been the BIG name for a long time.


I'm not sure of all the differences in each machine, as we are very new to the CF world (DS is 8 months old).

I know that the EnCourage system was one that was small enough for DS right now, and I've heard good things about them.

Things like, the hoses don't pop off, and you don't have to pause the machine to cough...the little things, I think