Child w/ Cystic Fibrosis

Corrine 1973

A Dream is a Wish Your Heart Makes
Joined
Mar 28, 2009
Messages
2,082
My son was granted a trip to WDW this summer through the Make a Wish program. He was diagnosed with Cystic Fibrosis last December and is on Two diffrent breathing treatmentsand other medication including a enzyme he has to take with all meals. Do I need a special Doctors note to bring his Medication into the parks? How equipped are the parks in handling any medical problems that may arise? How close is the nearest hospital? (JIC)

Don't want to be overprotective, but it's our first trip and I want to be prepared.

Corrine
 
My son was granted a trip to WDW this summer through the Make a Wish program. He was diagnosed with Cystic Fibrosis last December and is on Two diffrent breathing treatmentsand other medication including a enzyme he has to take with all meals. Do I need a special Doctors note to bring his Medication into the parks?
No, you don't need a doctor's note. There are security bag checks when you come into the parks, but they are looking for things like weapons and won't be concerned with the medications.
How equipped are the parks in handling any medical problems that may arise? How close is the nearest hospital? (JIC)

Don't want to be overprotective, but it's our first trip and I want to be prepared.

Corrine
Each park has a First Aid station that is operated thru Florida Hospital. They are staffed by nurses at all hours that the park is open. If more assistance is needed, or someone needs to be transported out, there is EMS service available within a few minutes.
If something happens out in the park, away from First Aid, many CMs have radios or telephones and can summon help right away. So, just have one of your party go to the nearest CM and they will help right away. (And I mean right away - we witnessed a child who was standing in a stroller and fell out when one of the other kids in the family pushed the stroller. Before we had a chance to even get over the 30 feet to where they were, a CM with a radio arrived. Within about 2 minutes, emergency responders were already there).

The First Aid stations are not just for emergencies.
If your child needs to lie down and rest for a little while or you need a quiet place where he can can lie down for postural drainage or pummeling, you can do that there. You can also store medication or equipment in First Aid until you need it (for example, if your child has a vest for doing vest treatments, you can store it there).

As for the hospital question, there is a very close hospital in Celebration. You may want to check with your child's doctors to see if there are any particular hospitals in the area that they would recommend.
If you are staying at Give Kids the World Village, like many WISH families do, they are used to having kids there who may have a need for medical care and they will be able to help you.

ALSO, if you have not checked it out yet, there is a lot of helpful information in the disABILITIES FAQs thread near the top of this board. One post is about travel and has information about travel with medications and medical equipment.
Post #3 of that thread has a lot of helpful links, including a link to the WISH Trip thread on the Community Board that is for people planning or helping others plan WISH Trips.
 
Sue just about covered it ;-)

I did my son's treatments in the room before going to the parks (pulomzyme and TOBI and CPT) I did carry around some hand percussors in case we needed to do something CPT in the parks, but found I didn't need to (my son was only 1 year old at the time)

I didn't have any problem with the enzymes at all (except I got them wet one time and didn't have any more with me :eek:)

And, I'm sure you know this, but keep up on the salt and fluids!!!!


Also - for sterlizing nebs, I use/used one of those medela sterilizer bags (made for breat pump parts) in the resort's microwave (I don't know if you boil at home) but I find this method sufficient for us before each use.


I got a GAC pass, but didn't really use it - the guy that wrote it said they couldn't guarantee that there'd always be shade or air conditioning :confused3



HAVE A GREAT TIME!!!!
 
Sue just about covered it ;-)

I did my son's treatments in the room before going to the parks (pulomzyme and TOBI and CPT) I did carry around some hand percussors in case we needed to do something CPT in the parks, but found I didn't need to (my son was only 1 year old at the time)

I didn't have any problem with the enzymes at all (except I got them wet one time and didn't have any more with me :eek:)

And, I'm sure you know this, but keep up on the salt and fluids!!!!


Also - for sterlizing nebs, I use/used one of those medela sterilizer bags (made for breat pump parts) in the resort's microwave (I don't know if you boil at home) but I find this method sufficient for us before each use.


I got a GAC pass, but didn't really use it - the guy that wrote it said they couldn't guarantee that there'd always be shade or air conditioning :confused3



HAVE A GREAT TIME!!!!

thanks for the great info, it is really helpfull. My son is on neb treatments twice a day right now but he is doing so well that I hope that he can start doing one soon. Got a appointment on Saturday so we will see.

I have heard from alot of wish trippers that with the MaW and GKTW buttons that in most cases you get in at exit or fast pass lane but I will get a GAC just in case. Better off being prepared.

I am glad you added the bit about the enzymes. I will definatly make sure I bring extas and keep them in a water tight container.;)

Great tip about the sanitizer bags, I would have never thought about that. I still have a couple left when I was breast feeding the baby. That will definatly cut out a couple of minutes of medical stuff out of my day.:cool1:

thanks again.:cheer2:
 

If you are staying at GKTW they will issue the GAC to you there.
 
I probably will be staying a GKTW, I did fill out paperwork for there, but I don't have any finalized plans yet so I can't be sure. Thanks for the info.
 










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