Going to WDW at end of May with Special needs child. Do I have everything I need?

[Corrine 1973]

I am taking my son to WDW at the end of May for a special 9th birthday celebration. My son has Cystic Fibrosis and has many special needs for his illnes. I am already planning on getting a GAC and a sticker to use a special needs stroller as a wheelchair.
I just want to make sure I am prepared for any situation for the trip so here are list of things (besides regular packing stuff and medications) That I am bringing.

1. Doctor's note stating that Liam has medication that needs to be refridgerated.
2. Doctor's note listing all of Liam's medications, the fact he is on a nebulizer, and is on a study drug that does not have a perscription on it.
3. A Doctor's note stating that the nebulizer is his and needed for medical reasons. (This is incase we bring nebulizer in park and leave it at FA. I talked to someone at Disney and they said he would need documantation that it belonged to him.)
4. Detailed note of what needs I would like meet when we get the GAC (other wise I will forget to mention something)

I have also heard from Nurse at Liam's appoint on tuesday that a patient who had just taken a trip had to register their nebulizer with the airline. Has anyone heard of this? Should I call the airline and ask them? Or is it something I need to contact the airport about?

TIA

 

[Corrine 1973]

I forgot to mention that I have also asked my DS's doctor for a list of Doctors and hospitals in the area who are experienced in treating patients with CF. I also asked for there #'s.

 

[SueM in MN]

I am taking my son to WDW at the end of May for a special 9th birthday celebration. My son has Cystic Fibrosis and has many special needs for his illnes. I am already planning on getting a GAC and a sticker to use a special needs stroller as a wheelchair.
I just want to make sure I am prepared for any situation for the trip so here are list of things (besides regular packing stuff and medications) That I am bringing.

1. Doctor's note stating that Liam has medication that needs to be refridgerated.
2. Doctor's note listing all of Liam's medications, the fact he is on a nebulizer, and is on a study drug that does not have a perscription on it.
3. A Doctor's note stating that the nebulizer is his and needed for medical reasons. (This is incase we bring nebulizer in park and leave it at FA. I talked to someone at Disney and they said he would need documantation that it belonged to him.)
4. Detailed note of what needs I would like meet when we get the GAC (other wise I will forget to mention something)

I have also heard from Nurse at Liam's appoint on tuesday that a patient who had just taken a trip had to register their nebulizer with the airline. Has anyone heard of this? Should I call the airline and ask them? Or is it something I need to contact the airport about?

TIA

I have never heard of this. Usually, the airline doesn’t care about things like that once you are thru security. The TSA website does specifically mention nebulizers in the part about respiratory equipment that is allowed to go thru security after screening. They don’t mention anything about needing a note.
You could check with your airline, but I really doubt that the airline would require anything. I would probably not contact the airport, because if one particular airline decided to require a note, they might not even know.

I have also never heard of anyone needing documentation that proves the equipment they are leaving at First Aid belongs to them - although you should mark the equipment so that you can identify it as belonging to you. What I have heard is that the First Aid staff will put small equipment into a bag, marked with your name or will mark larger equipment. Then, they have the owner fill out a document at First Aid. Remember, when you call Disney, you are talking to someone at a call center, not actually someone at WDW.

 

[Corrine 1973]

I have never heard of this. Usually, the airline doesn’t care about things like that once you are thru security. The TSA website does specifically mention nebulizers in the part about respiratory equipment that is allowed to go thru security after screening. They don’t mention anything about needing a note.
You could check with your airline, but I really doubt that the airline would require anything. I would probably not contact the airport, because if one particular airline decided to require a note, they might not even know.

I have also never heard of anyone needing documentation that proves the equipment they are leaving at First Aid belongs to them - although you should mark the equipment so that you can identify it as belonging to you. What I have heard is that the First Aid staff will put small equipment into a bag, marked with your name or will mark larger equipment. Then, they have the owner fill out a document at First Aid. Remember, when you call Disney, you are talking to someone at a call center, not actually someone at WDW.

Thanks Sue, I thought it was weird about the nebulizer also. The last time we flew they just plugged in the nebulizer at our home airport. I will call the Airline just to make sure that there is no policy change.

As for the note for WDW, she was on the phone with guest services upgrading my the DP which had to be done manuel because it was an older pin. She asked them and was told that it need to be labled as his. Maybe I just misunderstood her and it just needed just needed to be labeled for identification purposes. Thanks again.

 

[crashbb]

Is it possible that the other patient was flying out of the country? That's the only thing that I can think of.

 

[Corrine 1973]

Is it possible that the other patient was flying out of the country? That's the only thing that I can think of.

Possibly, just to make sure I am going to call the Airline tomarrow. I'll let you all know what happens.

 

[jmartinez1895]

We have flown with a neb many many times. You do not need any notes from a doctor or any type of paper work. They will have you take it out of the bag and they will x ray it and then wand it and you will put it back in your bag. Same thing with your meds., but because you do not have a RX label then you may need a note for that one.
Also, we have left our neb and other medications at the first aid station before and they have never asked for any type of paperwork from our doctor.We just put it all into a bag and they take care of it.

 

[Corrine 1973]

We have flown with a neb many many times. You do not need any notes from a doctor or any type of paper work. They will have you take it out of the bag and they will x ray it and then wand it and you will put it back in your bag. Same thing with your meds., but because you do not have a RX label then you may need a note for that one.
Also, we have left our neb and other medications at the first aid station before and they have never asked for any type of paperwork from our doctor.We just put it all into a bag and they take care of it.

Thanks for the info.

 

[Betty Rohrer]

for anything left at first aid, i would sure it is labled with name and where staying incase of being left. i have never had to use at Disney but have used at other parks. main thing i would do is lable everything possible with resort not home info.

 

[PrincessAndrea'sMom]

On our first trip with my trached daughter, I was so nervous! I went thru all the things you did...but truthfully, we did not need any of the paperwork. TSA has never questioned me about medicines in a cooler, or the ice packs. We also carry a suction machine, a pulse ox monitor and tons of extra supplies. We have never had a problem at the airport or with Disney security. Calm down and enjoy your trip!!!

 

[jjsmom]

About the nebulizer, My husband carried a nebulizer and a CPAP machine on the airplane (separate carry-on bag). The only thing we did was made sure all security people knew what we had when we put it on the belt.

 

[wishin' on a star]

We just travelled to Orlando from DC last week with a nebulizer. I had all of our medical equipment and meds in one bag, with all liquids in ziplocs ready to pull out. There was a sign at the beginning of security that specifically mentioned taking a CPAP machine out of a bag before placing it on the belt, so I asked the agent about the nebulizer. She said not to worry about it, and to leave it in the bag. I did, and it made it through security without another question. I even forgot to pull out my box of nebulizer meds (all liquids) and no one even asked what they were or had me open the bag. It was really no big deal. We never took our nebulizer to the park, but I'm sure having it labeled would be a good idea.

 

[minkydog]

I just wanted to comment on the whole list of doctors, meds, etc: it's a GREAT idea. Keep a copy with you at all times. Not because you think WDW needs it--they don't; they could care less. If you tell them your child has special needs, all they want to know is how to accomodate him. They don't even want to know the diagnosis, just tell them what you need to help him access the park.

But anyway, on th subject of carrying the info...my DH has severe lung & heart disease and we learned early on to keep notes with us with all his meds, doctors, and brief history of major medical events. More than one time we have made that dash to the ER with chest pain. In such an emergency, I seem to lose all my senses and I have a hard time remembering everything. And in those situations DH is usually so ill he is nearly uncommunicative. So, all i have to do is whip out his list. He carries a copy in his wallet and I carry a copy in my wallet. It gives the ER docs and nurses a very quick glance at everything they really need to know about him. Sometimes seconds count and they can read this paper and have it copied in the time it takes to get him into the cardiac cath lab

Hope you have a great time at WDW. I have a disabled child myself and I think WDW is the best place on earth for families with special needs kids. They go out of their way to make it magical.

 

[disfan07]

The only medication that I would think you really need a note for for security is the one without a prescription.

I travel with probably about 15 different meds and I have never carried a note for any of them but they all have prescription labels on them

I also travel with a neb and have never needed a note for it. I have always been told NOT to take it out of the bag when putting it through the x-ray. The TSA agents always remind me that all I have to do is unzip the bag. Taking it out risks it getting broken. The only time it comes out of the bag is if they swab it for explosives and they have me take it out of the bag. The agents always tells me that they don't take it out of the bag because they don't want to be responsible if something breaks.

I also travel with epi pens and inhalers that are never labeled (I dont carry them in the box...just in my purse) and they have never been questioned. But I do have extras in my bag in the boxes just in case.

I do have a medical information list that I carry with me that I typed up because I have 10 doctors plus multiple conditions and I can't remember all of it on a good day. It lists:
MY hospital with phone number
All doctors (names, specialty, phone number)
All diagnoses
All medications (what they are for and dosage)
All previous major surgeries and procedures

It's 2 pages long but I carry it with me every where. I would definitely make up something like that to carry with you

 

[SueM in MN]

I just wanted to comment on the whole list of doctors, meds, etc: it's a GREAT idea. Keep a copy with you at all times. Not because you think WDW needs it--they don't; they could care less. If you tell them your child has special needs, all they want to know is how to accomodate him. They don't even want to know the diagnosis, just tell them what you need to help him access the park.

But anyway, on th subject of carrying the info...my DH has severe lung & heart disease and we learned early on to keep notes with us with all his meds, doctors, and brief history of major medical events. More than one time we have made that dash to the ER with chest pain. In such an emergency, I seem to lose all my senses and I have a hard time remembering everything. And in those situations DH is usually so ill he is nearly uncommunicative. So, all i have to do is whip out his list. He carries a copy in his wallet and I carry a copy in my wallet. It gives the ER docs and nurses a very quick glance at everything they really need to know about him. Sometimes seconds count and they can read this paper and have it copied in the time it takes to get him into the cardiac cath lab

Hope you have a great time at WDW. I have a disabled child myself and I think WDW is the best place on earth for families with special needs kids. They go out of their way to make it magical.

Very good reasons why it’s important to have everything!

 

[sacall]

I forgot to mention that I have also asked my DS's doctor for a list of Doctors and hospitals in the area who are experienced in treating patients with CF. I also asked for there #'s.

Hi - my oldest dd also has CF. I just wanted to point out, if you go the the cff.org website, you can look up accredited CF care centers by state. There is one in the Orlando area - Nemours Children's Clinic. On the website, it lists a number and address. Whenever we travel, I use the website to find a care center.

We just flew to Florida last month and had no problems with taking all of her meds and equipment. Don't even need a doctor's note. I use a medical ice pack for the meds that need to be kept cold and pack all of her meds in two plastic bags to pull out when we go through screening.

She didn't need to do treatments during the day, so we never had to leave items at FA, but I would make sure they were all marked.

We went last August for her MAW trip and for the heat - it worked best to go either early in the morning or late afternoon. We made sure to be out of the sun and heat midday. We also picked up a case of water to keep her (and us) hydrated and gatorade. Per our doctor's instructions, she told us to add a little salt to her water. You might ask if you can do that for Liam.

Have a great time!

Stacy