DD just dx with JIA, also first trip GF, need planning advice

[ShelleyLynn]

We are headed back to WDW Oct. 5-12. We have been many times so I am very familiar with planning our regular trips. My DD9 was just dx with JIA and we are going through the process of finding the right med for her. Her pain is controlled with Indocin but her joint function is not what her doctor wants so there may be changes at her next visit in May. She has also been placed on a GF diet. Soooo, I need help knowing what requests or services Disney has to offer to help us continue to have great family vacations. We are staying at YC in standard room, will they make consideration of her medical problem if we request a room close to lobby/buses to limit her walking? I feel like any walking we can eliminate will help her with her comfort and stamina for the week. I know we can rent a wheelchair if needed at the parks each day to help limit the amount of walking she has to do. It will kill her to be in a wheelchair but it is better than overdoing her activity and hurting! Should we request a GAC? What type of benefit would that really be for her? Are there other requests anyone can think of that could help us? We did a cruise for spring break GF and that went well and I feel pretty confident about managing that issue after reading up here on the boards. We are still in a big learning curve about having a child with arthritis. Thanks for any advice

 

[Piper]

You don't give a lot of information in your post...what is her age, height, weight (that makes a difference in the type of WC.) Also, there is a lot of walking to and from the bus stops--especially in MK.

I was diagnosed with JIA (they called it JRA in those dark ages!) as was my son, so I am very familiar with it! Keep on top of her meds and maybe schedule a rest time in the middle of the day to help her.

Also, you should read the FAQs at the top of this board. It has a LOT of information that you will be able to use.

If you use a WC, you will not need a GAC. It is for invisible illnesses and a wheelchair makes you visible. Most lines do not have a place to sit while you wait in line and there is no "front of the line" pass (contrary to popular belief.) Disney's answer to mobility difficulties is to rent a WC or ECV.

I would rent a WC from an outside vendor so you will have it all the time. As to her not wanting it, ask her if she expects to meet anyone she knows. If not, why not use a WC and be more comfortable as well as make the experience more enjoyable for parents not having to worry.

 

[geek+nerd]

Tell her to think of a wheelchair like you think of glasses. If you need them, you use them. A wheelchair will make the experience so much more pleasant for her. She can focus on having fun instead of focusing on how far she needs to walk until she can rest.

For issues of stamina, Disney's answer is to rent a wheelchair or ECV.

I also recommend renting from an off site company. They will be more likely to have a chair that will be more comfortable for your daughter, you will have it all the time and it will be significantly cheaper than renting at the parks.

Good luck!

 

[clanmcculloch]

My 12yo was in a wheelchair for one trip when she was 10 due to a broken ankle. Let me tell you, kids in wheelchairs are treated really well. It doesn't hurt that she was wearing a birthday button and birthday mouse ears but I was surprised at just how many guest let alone CMs were wanting to just say hi and be extra pleasant to her compared to other trips. She can deck our her chair with lots of fun accessories if she'd like to make it more personal and interesting. I would strongly advise you to get a chair from an offsite company. You'll want no more than a 16" chair. The ones in the parks are 18" and will get uncomfortable. Plus, the only way to decorate her chair is if you have the same one the whole trip meaning renting from offsite.

I love the comparisson to glasses. That's so true!

You can certainly put a request in to be closer to the lobby but it's really not a medical request. If she doesn't have the stamina to get around the resort without a wheelchair then she definitely won't be able to handle the parks or the walk to the International Gateway in Epcot. Please do what you can to convince her to use a wheelchair.

WDW is the best place you will ever travel GF. From what I've read of Disney cruises, WDW is head and shoulders above the cruises. If you were happy with how the cruise handled her GF diet then you'll be even happier about WDW. I will warn you that GF QS options at YC/BC are extremely limited. Babycakes I believe can still be found at Beach Club Marketplace and they very recently announced that they'll have stuff at Boardwalk Bakery but don't count on QS meal options. I think at one time I was told you could get the allergy chicken tenders and GF hamburger buns at Hurricaine Hannah's but really, the options for QS are limited. I hear that Beaches & Cream can handle a lot but we won't set food in there after our dairy free milkshake was made with regular ice cream. I haven't read of other scary experiences other than ours so it's probably fine but I can't personally recommend going in there. The parks have plenty of great options and the TS restaurants at YC/BC are great as well. Kouzzina at BWI also gets amazing reviews.

 

[theduhaimes]

My DS7 was diagnosed with JIA last August when he was 6. We already had a trip planned for WDW in December and decided to go with it and make the best.
We stayed at the POR in a standard view room. I also requested (medical request) a room close to the lobby/food court and explained my son's issues. We did not receive that. Our room was actually the farthest from the lobby/food court. So be warned that even if you put in a medical request, you may not get it. I was told the only way to guarantee a close room was to pay for a preferred room.
As far as the GAC goes, it was a life saver. We were able to use his stroller as a wheelchair in the lines and it made it much easier for him. He does not normally use a stroller at home, but he quickly realized that it was his best option. We also explained to him that none of his friends would ever know. When we had photos taken, we made sure he was standing and not in his stroller.
We had taken many trips to WDW before this one but we found that if we just stepped back and let our son set the pace things went great. We had such a great trip that we have another one planned for this November/December for 12 days.
I hope you enjoy your upcoming trip and good luck with your daughter's JIA.