Cystic Fibrosis

[#1_Donald_Duck_Fan]

I was just wondering if there were any other CF patients and what things you do to make your trip more pleasent

 

[SueM in MN]

I haven't seen anyone else post about a family member with CF.
A lot of times people who have just been lurking (looking, but not posting) begin posting when they see someone who has a similar situation, so hopefully, that will happen to you.

The things I'd suggest, would be planning a visit for the quieter times (which also happen to be the cooler times). The cooler temps help with avoiding dehydration and there are less people to worry about catching germs from.
You can use First Aid in any of the parks for doing chest PT and they will also store equipment for you (like nebulizer or pummeling vest) if you need to use them during your time in the park. Each First Aid is set up a little differently, but they all have some semi private cubicles with a cot and a chair, with curtains for privacy. They also have actual treatment rooms with doors.
A DVC villa would be nice if you can swing it. You would have a full kitchen with a microwave, stove, dishwasher and refrigerator in the 1 bedroom or larger units. The studios have a microwave and a small, under counter refrigerator.

 

[digilala]

sue, thanks for the info- my son has CF and he wants to go to WDW for his make a wish trip. I didn't realized the 1st aid stations would store his equipment. I don't know that we would need that service but it is nice to know about it- just in case!
I have been reading these boards like crazy when we first found out it was a possibilty to go to WDW- We would like to go in February when my son turns 5 and celebrate his birthday there. I am hoping that is the perfect time to go with him
Laura

 

[Chuck-PA]

Our son has Cystic Fibrosis and he is now 17 years old.
When my son was about to turn 6, we took our first trip to Disney.
We were anxious about everything being so far away from home, his equipment, his meds, the heat......and so on. As stated earlier, there is the First Aid station, they would hold meds (refrigeration meds) and any equipment for you. We have never used it. We have gone back to the room to do treatments and a little rest time and swim time to help loosen the mucous. There is a Cystic Fibrosis clinic in Orlando if there is an emergency.
You can get the phone # and location off the CF Website www.cff.org

In August we took our 16th trip with him. If you have any specific questions, just ask.
We have gone all different times of the year. In the winter, even though it is less crowded, we get concerned with people having colds and spreading germs by touching everything. We bring hand sanitizer and use it alot. His asthma component was higher in the winter so we had to increase treatments while there.
He is fine in the summer with all the humidity down there and the crowds.
We just keep feeding him lots of fluids and lots of salty snacks.

 

[Chuck-PA]

More info regarding a trip with a CF child-----

Make sure you have a hat for their head and lots of sun tan lotion, because some of the meds they are on can make their skin sensitive to the sun.

The whole atmosphere of Disney will make your trip a pleasant one, there are no special things needed. We love it. It takes us away from a world that is so stressed on a daily basis that for a few days it is all forgotten. Even doing the treatments and Chest PT are manageable without stress.

Let the hotel know you will need to have a fridge for your medicines and you will be able to get one for free. Sometimes it is only big enough for your medication only.

You can get a GAC pass at guest relations at the park entrance if you child has any special situations. Talk it over with your CF specialist to see if he/she has any recommendations for your child.

Just have fun. Create lots of memories, these will get us through the tough times with CF.

 

[SueM in MN]

Let the hotel know you will need to have a fridge for your medicines and you will be able to get one for free. Sometimes it is only big enough for your medication only.

One recent change - the delux and moderate hotel have added refrigerators for all rooms, without charge . They are the dorm size refrigerators. I'm not sure if they have completed puttinng them in all rooms, so it's still a good idea to ask, like Chuck mentioned.

 

[eternaldisneyfan]

Hi! I don't have CF but my Muscular Dystrophy has a lot of pulmonary involvement.

(16% vital capacity or PFT, trach, asthma, sleep apnea, permanently collapsed lower lobe of left lung, and use a vent part-time. I take breathing treatments (Xopenex) every 3 hours, Pulmozyme and Pulmicort once a day, Atrovent and Rhinocort Aqua nasal spray)

We recently bought a portable nebulizer called the Aeroneb Go which is a little larger then an inhaler and completely silent. I love it because I can take treatments on the go without worrying about finding a plug or the noise disturbing others.

I hope you have a great trip!


Christamae

 

[Chuck-PA]

Hi! I don't have CF but my Muscular Dystrophy has a lot of pulmonary involvement.
We recently bought a portable nebulizer called the Aeroneb Go which is a little larger then an inhaler and completely silent. I love it because I can take treatments on the go without worrying about finding a plug or the noise disturbing others.

We are curious about the Aeroneb Go. Where did you see this/or order it from? If you don't mind my asking, how much it cost you? And, how much the neb cups are for this?

Thanks
Chuck

 

[eternaldisneyfan]

This website has good info:
http://store.noahsarkhomecare.com/meinaegomine.html

You can order directly from this site for $265
http://www.healthylifepharmacy.com/...products_id/1701?kw=aeroneb+go2&source=gagneb

The average is cost is $280. Some insurances will pay for it, ours wouldn't because I have a regular nebulizer. Even if you're paying for it, you'll need a prescription.

You only need one neb cup which you must rinse after each dose. I don't take Pulmozyme in the Aeroneb. I think you can order more cups but not sure how...

A google search of 'Aeroneb' will pop up lots of info!

Good luck!
Christamae

 

[#1_Donald_Duck_Fan]

Thanks

I'm going to look into the Aeroneb it looks great cut down on my neb tratment times

 

[princess mom of 4]

Hey there! Just got home Wednesday 10/5 from our 5day trip to the world, with my 2 CF kids, ages 14 and 4. We did nebs/VEST treatments in the morning, while I and DH drank our coffee and dressed, and then again in the evening...I didn't know about the First Aid stations storing stuff, or we might have used that instead of leaving the park. My 14 yr old also has Cerebral Palsy and is in a wheelchair (talk about a double whammy...), so we got a GAC for him, which really helped the 4 yr old too, in terms of waiting in long hot lines. I would plan on lots of fluids, salty snacks, and lots of alcohol hand sanitizer for germ killing! I hope you have a great trip - We're already planning our next one!

 

[CFandAutism]

Wondering when is the least crowded time to visit? My son loves the water so we would need a low crowd time plus weather for swimming. And - how do you all handle the sterilization if you do not have a stove in the room? I really do not like to use a microwave for this purpose. We recently found out CF not automatic for the "Wish" organizations anymore - so we would have to pay the big bucks for a villa. We are thinking of renting a house with a pool instead.
I read somewhere we can get preferred parking? Anyone - please confirm
To the person whose son has CF and CP - I feel for you.

 

[livndisney]

Wondering when is the least crowded time to visit? My son loves the water so we would need a low crowd time plus weather for swimming. And - how do you all handle the sterilization if you do not have a stove in the room? I really do not like to use a microwave for this purpose. We recently found out CF not automatic for the "Wish" organizations anymore - so we would have to pay the big bucks for a villa. We are thinking of renting a house with a pool instead.
I read somewhere we can get preferred parking? Anyone - please confirm
To the person whose son has CF and CP - I feel for you.

This is an old thread, but to answer your questions-

If you have a handicapped tag you can park in the handicapped areas. If not you can park in the regular lot and ride the trams to the park entrances. If you stay onsite the buses drop you as close to the park entrances as you can get.

Lower crowds with swimming weather would be August and September. January is also low season-but the weather can be cold.

Have you considered the family suites at Allstar? Or renting points for a villa onsite with a full kitchen? You can learn about points in the DVC section on this board.

 

[SueM in MN]

Wow!
This is an old thread, so the information in eternaldisneyfan’s post about Aeroneb Go is probably out of date.

I agree with what livndisney posted.

We have been to WDW in early January and also in February and it can be cold. The pools are heated, but the air is not, so getting out is cold!

AllStar Family suites would be a good choice. Another possibility would be to rent DVC points - there is a DVC rental board on this site.

I would also not completely count out MAW; health in people with CF is much better than when I started Nursing school many years ago, it still is a very serious illness. In general, MAW goes by the doctor’s statement of the child’s condition.

 

[Sandy321]

I'll also add that having a good touring plan is key -

with tourguidemike being out of date - many people are now over at
http://www.easywdw.com/

that site has links to Best days for each month - for each park - and reasons why, if you go to the top there is a link to go to their forums, many helpful people in those forums will help you with itineraries

best of luck -

 

[wuv tigger]

Omron Micro Air ~Model NE-U22.

It runs two AA Batteries. I've had it for years & love it!

I'm not sure how to post a link... gotta learn how to do that.

http://www.omron-healthcare.com/exp...rketing_material/Catalogue/Catalogue_2011.pdf

on page 31.

I also have a hard plastic case to carry the machine, the base, mouth piece and medicine cup.

 

[princess mom of 4]

Wow - I love it when a thread has such longevity! We are getting ready for another trip - our CF'ers are now 10 and 20. I am wondering about how to sanitize their neb cups (at home we put in dishwasher). We're not going to be in a villa or anything with a kitchen..... Caribbean Beach this time we think.

 

[SueM in MN]

Welcome back and hope you have a great trip.

I have heard of people taking a hot pot and boiling the neb cups. Check with the manufacturer about how long to boil. You want to kill the germs, but not melt the cup.

I have also heard of people using a baby bottle sterilizer.

Those ( plus the dishwasher) actually perform high level disinfection - destroy all microorganism except some bacterial spores. There might be some Chemical high level disinfectants that will work too. You would be able to get information from the manufacturer of your equipment.

Since you found this thread again, let us know what you find out and how well it worked.