Helpful hints for touring with CF

[mom2mek]

Two of my nieces have Cystic Fibrosis. We have been to Disney with them in the past, but I was just wondering if anyone on the DIS had some helpful tips for treatments or anything that might be of use on our trip.

We stay offsite in a villa because it's nice to have the extra space, full kitchen for sterilizing, etc, and I think we feel (whether or not it's true) that there is less "traffic" in and out of the homes and hopefully less germs. It's also great to have the washer and dryer (we had 2 in the last house we were in which was very helpful). There ages will be 12 and 7 and I'm really trying to make this trip special for them as our last trip was derailed due to illness (not CF related, but a stomach bug that their dad, my DBIL, brought down from GA- so it was inevitable we would all get it and we did!)

They are the sweetest girls and we hope to make Disney a regular trip every 2 -3 years, but you never know what may happen and if one or both of them couldn't make the next trip due to hospital stay or sickness, I want to try and make things as special as I can each trip. I don't know how they would feel about certain things (they don't like to feel different) so any suggestons would be appreciated.

If it helps, we will be there with a big group - 8 adults and 8 kids. Thanks.

 

[bopper]

I saw a couple of threads related to CF:
http://www.disboards.com/showthread.php?t=1337939&referrerid=&highlight=cystic+fibrosis

http://www.disboards.com/showthread.php?t=767359&referrerid=&highlight=cystic+fibrosis

 

[Charleyann]

Two of my nieces have Cystic Fibrosis. We have been to Disney with them in the past, but I was just wondering if anyone on the DIS had some helpful tips for treatments or anything that might be of use on our trip.

We stay offsite in a villa because it's nice to have the extra space, full kitchen for sterilizing, etc, and I think we feel (whether or not it's true) that there is less "traffic" in and out of the homes and hopefully less germs. It's also great to have the washer and dryer (we had 2 in the last house we were in which was very helpful). There ages will be 12 and 7 and I'm really trying to make this trip special for them as our last trip was derailed due to illness (not CF related, but a stomach bug that their dad, my DBIL, brought down from GA- so it was inevitable we would all get it and we did!)

They are the sweetest girls and we hope to make Disney a regular trip every 2 -3 years, but you never know what may happen and if one or both of them couldn't make the next trip due to hospital stay or sickness, I want to try and make things as special as I can each trip. I don't know how they would feel about certain things (they don't like to feel different) so any suggestons would be appreciated.

If it helps, we will be there with a big group - 8 adults and 8 kids. Thanks.

I have a child with CF. This will be his third trip. He also has CF related arthritis. We bring his wheelchair for endurance and flareups. Doctors also male sure he has pain relief medications and an antibiotic as a prophylatic in case.

WE avoid long time in the sun. Head for shady areas and carry lots of fluids and salt!

We get a GAC, which gives us alternate entrances. Reduces long wait. We take longer vacations to give him rest in between parks. This will be our first onsite and I think this will help!

Our pediatrician also gives us a letter for airport and boarder.(For us) We are also given the name and number of the closet CF clinic which is very near Disney in Kissimmee!

I take his aresol machine with us which you can plug in and also is battery operated in case he needs one in the park due to excessive coughing and difficulty breathing. Also carry hand wipes to clean off door handles, toilets and sinks (places where kids are bound to touch and then put hands in their mouth (high traffic areas)

Feel free to ask anymore questions!

Have Fun

Charleyann

 

[mom2mek]

I have a child with CF. This will be his third trip. He also has CF related arthritis. We have to rent a wheelchair for endurance. Doctors also male sure he has pain relief medications and an antibiotic as a prophylatic in case.

WE avoid long time in the sun. Head for shady areas and carry lots of fluids and salt!

We get a GAC, which gives us alternate entrances. Reduces long wait. We take longer vacations to give him rest in between parks. This will be our first onsite and I think this will help!

Our pediatrician also gives us a letter for airport and boarder.(For us) We are also given the name and number of the closet CF clinic which is very near Disney in Kissimmee!

I take his aresol machine with us which you can plug in and also is battery operated in case he needs one in the park due to excessive coughing and difficulty breathing. Also carry hand wipes to clean off door handles, toilets and sinks (places where kids are bound to touch and then put hands in their mouth (high traffic areas)

Feel free to ask anymore questions!

Have Fun

Charleyann

Thanks Charleyann. I just responded to your PM, but after reading this had a couple of other questions: Did you do his treatments in the AM before going to the parks or try to fit them in the middle of the day or at night? Did you do any at the parks in the first aid areas? If so, how was that? Was it convenient bringing in everything or are we better to go back to the villa if we need to? How exactly do the GAC cards work? We have 8 kids and 8 adults in our group and I know the girls wouldn't want to ride things without the others. Thanks so much and I will keep you and your son in my thoughts.

Sara

 

[Charleyann]

I did aresol, PEPS and chest physio therapy in the morning. I was insructed by the CF, physiotherapist to do all lobes. Then when we came home from the parks we did another aresol and another physio. His lungs remained stablized the entire time. We didn't have to use aresol during the day. I was told we could go to first aid building if we needed to rest or do physio

His bowels however caused us problems and we had to cut trip short. He went from the plane to the hospital and stayed in hospital for 5 days! Make sure the girls get lots of fluids!

Charleyann

PS... just sent you another PM....

 

[disneynewbeemom]

I bet that they would feel pampered at BBB. Most little girls like to look like princesses!

 

[mom2mek]

I bet that they would feel pampered at BBB. Most little girls like to look like princesses!

Yes, great minds think alike, I guess! We have 6 appts for the BBB inside the castle: My two daughters and 3 nieces (the 2 with CF and their sister) as well as my son, who is getting the "cool dude" while his cousins turn into princesses. Very much looking forward to it.

 

[Chuck-PA]

My son is 19 years old with CF. We have been going to Disney every year or twice a year since 1994, once they told us he contracted pseudonomas (sp?). His CF affects both his lungs (has strong asthma component) and his digestive system.
We have gone to Disney just about every month of the year.

Like the previous poster said, plenty of fluids and extra salt, wipes (for their face and the white line they may get) and hand sanitizer.
We did his treatments in the morning and again at night, but that would depend on what we were doing. Sometimes it would be before dinner or late at night after a park. We take his inhlaer with us for extra puffs during the day.

We have learned to adjust his treatments accordingly to his schedule.
He recently graduated high school and is working part time and has a girlfriend. We would rather adjust the treatment schedule than he skip his meds which is known to happen as they get older and busier with their lifestyle.

Also, let them go swimming everyday, great workout for the lungs (we consider this an added chest PT) and keeping them cooler.
Any questions, just ask.

 

[SueM in MN]

Did you do any at the parks in the first aid areas? If so, how was that?

There is a First Aid in each park. They have private cubicles with cots and a chair. They usually have 3 walls and a curtain for the 'door'. They also have more private rooms (think Dr.'s office exam rooms) that can be used. They will store equipment for you that is not needed throughout the day and you can come and use it.

How exactly do the GAC cards work? We have 8 kids and 8 adults in our group and I know the girls wouldn't want to ride things without the others. Thanks so much and I will keep you and your son in my thoughts.

Sara

PLEASE OTHER POSTERS, DO NOT GIVE SPECIFICS ON HOW GACS WORK OR ON SPECIFICALLY HOW TO GET ONE> THANK YOU.

If you look in the disABILITIES FAQs thread near the top of the thread list on this board, one of the sections is about GACS (Guest Assistance Cards).

No one tell you exactly how the GAC will work. That's because it is issued based on the needs of the person with a disability, so even people with the same diagnosis may have different needs. They/their parents will need to think about what needs they have, which might include things like waiting out of the sun or in less crowded areas. They will need to be able to talk about their needs to the CM in Guest Relations. Their needs may mean that they sometimes are not waiting in the same area as the rest of your group (sometimes the appropriate waiting area is not very large). Also, how the GAC is handled at each attraction may vary depending on things you can't see - like how much waiting room is available, whether the line is in the sun, how busy it is, how much staff is there, etc, so even the same person with the same GAC might be handled a bit differently each time they come to the same attraction.

The GAC is usually issued for up to 6 people (5 plus the person with a disability). In your case, they could request a GAC for each girl - just in case they do separate. I have traveled with large groups at time (our biggest was 14) and it is MUCH easier to not try to keep a group that large together (I've said it's like hearding cats - my DH was the front wrangler and I was the wrangler at the rear that kept the 'strays' in line).
Fastpass will help you a lot and would provide short waits in line. Your large group could also be accomodated by using Fastpass; if you all have Fastpasses, you all would wait in the Fastpass line together.

 

[princess mom of 4]

well, this thread really caught my eye! My DS-15 and DD-5 both have CF, and we are returning to the World in December...I think all these tips are great, especially about the first aid stations. Where is the one at Magic Kingdom?

 

[Charleyann]

I have a poor sense of direction but I'll give it a whirl! I believe it is in front of the Castle. Cross the street from Crystal Palace. Near the bathroom and ice -cream parlor on mainstreet....

I can see it and get there......

I am sure someone will correct me if I am wrong and give you better directions!

Charleyann

 

[Cheshire Figment]

There is a large alcove between Casey's and the Crystal Place. In that area are Baby Care, First Aid, and the MAW Lounge.

 

[GabiO]

We are also given the name and number of the closet CF clinic which is very near Disney in Kissimmee!

Charleyann,

Where in Kissimmiee is the CF clinic you mention? I have a 3-year-old with CF, and we are all going to WDW May 17-29. Since the only CF center I know of is the Nemours Children's Clinic in Orlando, it would be great if you could share that information.

Thanks!

Gabriela

 

[Charleyann]

Charleyann,

Where in Kissimmiee is the CF clinic you mention? I have a 3-year-old with CF, and we are all going to WDW May 17-29. Since the only CF center I know of is the Nemours Children's Clinic in Orlando, it would be great if you could share that information.

Thanks!

Gabriela

The Nemours Children's Clinic - Orlando Orlando FL David Geller, M.D. (407) 650-7366 . I thought my CF team said Kissimmee....It is Orlando

 

[GabiO]

Thanks!

Another little tip--when we travel, I always find the phone number of the pharmacy that's closest to where we'll be staying in case our CF physician has to call in "emergency" medications, such as oral steroids.

 

[Talking Hands]

well, this thread really caught my eye! My DS-15 and DD-5 both have CF, and we are returning to the World in December...I think all these tips are great, especially about the first aid stations. Where is the one at Magic Kingdom?

Go to the end of Main Street and make a left at Casey's and go towards Crystal Palace. Before you get to Crystal Palace look toward your left and it is right there. Baby Center is also there as well as some restrooms.