What should I do??

[6gr8kidz]

We are scheduled for a 8 night stay on 8-31. This trip was planned in celebration of my 8 year old daughter. She has Juvenile Rheumatoid Arthritis and has been on some pretty serious meds. She has weaned off of 5 meds and is now only on one med which she gets by injection once a week.

We were celebrating almost 1 yr of being "flare" free. She has had no pain, stiff or swollen joints and no hospitalization for an entire year. Every single time we have gone to Disney since her diagnosis we always asked for GAC and she was excited that she was not going to need any special treatment.

This morning I took my oldest son to the Dr for a sore throat and turns out he has strep throat. OK...I try not to panic. My daughter in on medications that cause her immune system to be none. So, today being the day she was SUPPOSED to get her shot, I was going to skip it because her joints have been doing so well and I didn't want to risk her getting an infection (strep throat) and ending up in the hospital. That was until I looked down and her hand an notice her finger looks swollen. I picked up her hand to see if she had "hurt" and she couldn't move her fingers or her wrist.

I have an email into her rheumy now waiting to see what she is going to do. I am wondering if she is going to put her on prednisone. I have a love/hate relationship with this drug.

So, I guess we will be asking for a GAC after all...We were hoping we could do it normal but I know the constant standing or sitting in a wheel chair is hard on her. She has to be constantly moving or she stiffens up. I hate this disease and I hate that she will never remember life without it. She has had it since she was 5.

I made sure when I booked our package that I told them we were celebrating her good health. Should I call back and tell them nevermind...If for some reason they do do something special for her I don't want her to feel like a heel if she still is in the flare?? Am I making any sense??

Also, every time we have gotten a GAC we would tell the CM what her diagnosis was and that she had to be constantly moving. She couldn't stand or sit for very long. We do have our own wheelchair. Have the rules changed on the GAC procedures?? I hate having to ask for one but I know there is no way we could do Disney with out one if she still is in a flare.

Sorry for the long story..If you read the whole thing..Bless you.

 

[SeaSpray]

I have RA and I'm 46 years old and I can't imagine your DD having to deal with this

I understand what you're saying when you said she has to keep moving. It's like you feel like the Tinman from the Wizard of Oz, asking for the "oil can", because your joints start to stiffen.

I don't have any advice for you, I'm sorry, I'm new to the whole "Disney with a disability" thing, and just got back from my best trip ever to WDW, but within 2 days of returning, I got hit hard with a flare up, and I'm still dealing with it. I rented a scooter while at Disney because in addition to the RA I have a bad case of plantar fasciitis and recently had a couple of cortisone injections in my heel which didn't help much, so it's a strange predicament for me; walk and keep my joints happy, or sit and keep my foot happy. lol In the end, I did a little of both, and felt great during the trip.

I hope that your DD has a great time on this trip, and can enjoy it to the best extent possible. From reading this board before my trip, I know that you can just tell the CM what needs your DD has (for example, can't stand still for too long, etc), and they will give her the appropriate GAC card.

I don't know if I'd call back and say anything to CRO regarding the change in your DDs health; if they do happen to spread a little "pixie dust" or special surprises her way, then she deserves it, no matter her current condition. This is just my opinion, I'm sure you'll do what's right for you

 

[6gr8kidz]

SeaSpray~ Thank you for taking the time to respond. It is a shame that anyone has to live with this disease. Rach has been a trooper but I want her to be comfortable in Disney.

Did you have any trouble getting a GAC?? I worry because people don't really understand when I say she has JRA. They think it is arthritis (roll eyes) and it is not that bad. They don't understand when I tell them she can't stand in line or sit in a wheelchair for very long. I get the feeling they think I am trying to lie. I hate that.

What meds are you on?? My daughter is on Enbrel.

I talked to her rheumy this morning and since she is flaring we are to go back on Naproxen 2 times a day do the enbrel 2 times a week instead of 1 and if in 2 weeks she is not better we have to bring her in for a solumedrol infussion. (gotta love the steroids~NOT)

 

[SueM in MN]

I don't know if you have read the disABILITIES FAQs thread, but if you haven't, check out the section about GACs on that thread. They have not changed the GAC in several years, so I would not worry about that. They never needed the diagnosis (the reason is that even people with the same diagnosis have very different needs). Just describe your DD's needs and you should be fine.

I agree with SeaSpray about not mixed feelings about telling the resort. If they do anything 'special', it sounds like she really needs some pixie dust.
Did she know the trip was celebrating her good health? If not, I'd just ignore that. You are celebrating HER - however she is right now.

 

[6gr8kidz]

YEs the whole family knew we were taking a longer vacation because she has been so healthy. Thanks for the input. I guess I will just wing it. I mean what are the chances someone would actually think that this was something to celebrate?? You know it is not like a birthday or anniversary. It is a big deal to me but not to everyone else.

Thanks for your help. I did read through the GAC thread but I wasn't sure if they changed the rules for them.

 

[SeaSpray]

SeaSpray~ Thank you for taking the time to respond. It is a shame that anyone has to live with this disease. Rach has been a trooper but I want her to be comfortable in Disney.

Did you have any trouble getting a GAC?? I worry because people don't really understand when I say she has JRA. They think it is arthritis (roll eyes) and it is not that bad. They don't understand when I tell them she can't stand in line or sit in a wheelchair for very long. I get the feeling they think I am trying to lie. I hate that.

What meds are you on?? My daughter is on Enbrel.

I talked to her rheumy this morning and since she is flaring we are to go back on Naproxen 2 times a day do the enbrel 2 times a week instead of 1 and if in 2 weeks she is not better we have to bring her in for a solumedrol infussion. (gotta love the steroids~NOT)

Hi

I didn't get a GAC because I had rented the scooter and using it was enough for me to be comfortable. At times I had to have my DH drive it so I could get up and move. However if it were my child who was suffering with this I'd probably be much more pro-active and request a GAC for them. Try and ignore them if they give you the impression they think you're lying. YOU KNOW what your DD has to deal with, and the bottom line is that she will need the GAC to keep her as comfortable as possible, by allowing her to keep on the move when necessary, and to be able to rest when she needs a rest.

I know how you feel though when you try and describe the feeling of needing to get up and walk and move but then needing to sit back down and rest, it's a bad cycle, and there's no easy solution, not even a wheelchair or scooter.

 

[Piper]

On my last trip to WDW. I got the GAC and didn't need to use it--but it was there if I did. You never know with an autoimmune disease just how you are going to be from minute to minute! I'd get it just in case!

 

[livndisney]

So, I guess we will be asking for a GAC after all...We were hoping we could do it normal but I know the constant standing or sitting in a wheel chair is hard on her. She has to be constantly moving or she stiffens up. I hate this disease and I hate that she will never remember life without it. She has had it since she was 5.

I made sure when I booked our package that I told them we were celebrating her good health. Should I call back and tell them nevermind...If for some reason they do do something special for her I don't want her to feel like a heel if she still is in the flare?? Am I making any sense??

Also, every time we have gotten a GAC we would tell the CM what her diagnosis was and that she had to be constantly moving. She couldn't stand or sit for very long. We do have our own wheelchair. Have the rules changed on the GAC procedures?? I hate having to ask for one but I know there is no way we could do Disney with out one if she still is in a flare.

Sorry for the long story..If you read the whole thing..Bless you.

I am sorry your daughter is having to go through this. But I agree with the poster who said go and celebrate HER!

I understand not wanting to need a GAC and wanting to be "normal". The reason I understand is because I fought getting a GAC for a long time. I wanted to go to Disney with my DD and be "normal". I have just recently come to terms with the fact that that is not going to happen atleast right now. To add to that, the first time I asked for a GAC was not a "magical" experience. Once I did get the silly thing, I hated it. I pretended I did not have it. And I missed out on a lot. I can now experience a lot more things with my DD. I have come to accept that if that little piece of paper gives me a chance to see my DD light up when she sees a princess that so be it.

Go, enjoy you daughter. Do NOT be afraid to ask for a GAC. If you need more ASK for it. (I'll be there the same time, if you don't want to ask for one, call me I will! )

Hugs to you and your DD

 

[6gr8kidz]

Thank you guys....I think we are going to ask for the GAC and only use it if we need it.

The meds seemed to have kicked in a bit her fingers and hands are not as swollen.

 

[PatMcDuck]

My daughter is newly diagnosed Juvenile Dermatomyositis, sort of in the same grouping...... she is on heavy meds (120 mg of the predisone!), other pills, and injections, IVIG, etc. I also have a son with Downs, and autism, who uses a wheelchair at WDW.

This was the first time we got a GAC, with my son we just used the wheelchair without one. This time my daughter was the sicker one. We got the GAC, with 2 stamps, one for waiting out of sun, in shaded area if available.

The GAC helped us out alot. The sun is a major issue, so we only went to the parks for short spurts, like 3-4 hours, tops. We did go once at night, but fatigue is an issue.......