Juvenile Arthritis

[Julissa82]

I was planning on a trip to Disney this year as a surprise for my DD who is 11yrs old. She was recently diagnosed with Juvenile Arthritis. I wanted to rent an ECV but reading some of this broads it says the person has to be 18 and up. Walking short distances is ok for her but then she starts getting swollen ankles and knees with excruciating pain. I don't want to rent a wheel chair because I would to be pushing it, I know it's a little bit selfish, but I have a bad back and want to avoid pushing a wheel chair. All opinions and helpful ideas are welcomed. Thank you !!!

 

[Gracie09]

At her age your options are limited. You can rent a wheelchair. Depending on her size you may want a youth size so rent from off site. You could try to find and ecv to rent from you home and being it with you but I personally don't think that is a great idea. They are motorized vehicles in a crowded area. They take a lot of mental stamina to operate and a child not use to driving on could cause damage to themselves and others around them.

 

[SueM in MN]

Most of the rental companies will not rent for use by anyone under 18 years old ( for many of the reasons Gracie09 mentioned). One company that I know of, Randy's, will rent for use by older teens a after seeing them and evaluating whether they can safely operate it. You might be able to rent one from your home area and bring it, but depending on the size of your 11 year old, you may not be able to find one small enough to use.
If her arthritis affects her arm, wrist or hand joints, you want to be very careful about fit since reaching or putting/keeping the upper extremity joints in certain positions may cause pain there.

Since she was recently diagnosed, her medication may not be as effective yet as they will be. But, you might want to check into whether your insurance would cover a mobility device for her. Most doctors want people to stay as active as possible, but being in pain is a sign of overuse. If walking short distances causes pain, she will need something since most people walk at least 5 miles an average day in the parks (much of it outside of lines).
If you are working with a Physical Therapist (in school or out), they may also be able to help with figuring out or even finding places that rent or lend out appropriate equipment.

As for pushing a wheelchair, you may find it is really not hard on your back at all. Pushing one does provide some support to the pusher. The main problem that could cause back pain is push handles that are too low - that causes the pusher to crouch over. It takes very little force to push a wheelchair; my DD weighs less than 100 pounds and her wheelchair (a lightweight custom chair) weighs less than 30. I can still push that combination of over 100 pounds with just the force of my little finger.

 

[Julissa82]

Thanks everyone !!! Now to find a wheel chair that fits her outside of Disney any ideas??

 

[PatMcDuck]

I have to push my 165 pound son around the parks. We now have a Convaid chair, the biggest size. I cannot push him with one finger.

Hills are difficult, and they are all over the place, even on queue lines. I am lucky his chair has handbrakes for the downhill challenges.

I wish I could get a "power assist" button just for the uphill sections. I sometimes get my son to walk up those, he can walk, just not all day long, and has bad vision and balance (I get him onto hold the chair when he walks).

I hope they get her JRA symptoms into a remission soon. My daughter has juvenile dermatomyositis (not the joints, it is a skin/muscle disease). Eventually they got her pretty stable.

 

[SueM in MN]

I have to push my 165 pound son around the parks. We now have a Convaid chair, the biggest size. I cannot push him with one finger.

Hills are difficult, and they are all over the place, even on queue lines. I am lucky his chair has handbrakes for the downhill challenges.

I wish I could get a "power assist" button just for the uphill sections. I sometimes get my son to walk up those, he can walk, just not all day long, and has bad vision and balance (I get him onto hold the chair when he walks).

I hope they get her JRA symptoms into a remission soon. My daughter has juvenile dermatomyositis (not the joints, it is a skin/muscle disease). Eventually they got her pretty stable.

That's why I added my DD's weight and weight of her wheelchair. Her chair, backpack and her weigh less that just your son. LOL

Does your son's chair have small or large tires?
The larger the tires, the easier it is to push.

For the OP, some of the rental companies listed in post 2 of the disABILITIES FAQs thread rent smaller size wheelchairs (like 16 inch wide instead of the more common 20 inch side adult size). I am pretty sure Apple does and Care or Walker may also.

I would probably start close to home and see if her doctor or therapists know of any place close to home (especially lending closets). If you are traveling by air, wheelchairs do not count toward your baggage allowance and there is no charge to check them. That way, you would also have one for use in the airport (you can also request wheelchair assistance from the airline when checking in if you don't have a wheelchair).

 

[Mrsjvb]

I was planning on a trip to Disney this year as a surprise for my DD who is 11yrs old. She was recently diagnosed with Juvenile Arthritis. I wanted to rent an ECV but reading some of this broads it says the person has to be 18 and up. Walking short distances is ok for her but then she starts getting swollen ankles and knees with excruciating pain. I don't want to rent a wheel chair because I would to be pushing it, I know it's a little bit selfish, but I have a bad back and want to avoid pushing a wheel chair. All opinions and helpful ideas are welcomed. Thank you !!!

she is far too young to be allowed to operate an ECV unless it is her personal one that you bring from home. so it is rent a chair or have a severely curtailed experience.

back in the deep dark ages of antiquity when I was 11( and had been diagnosed over 5 years earlier) and there was no such thing as an ECV or a pediatric wheelchair, when I had overdone it we left the parks and hung out at the resort.

 

[Julissa82]

That's why I added my DD's weight and weight of her wheelchair. Her chair, backpack and her weigh less that just your son. LOL Does your son's chair have small or large tires? The larger the tires, the easier it is to push. For the OP, some of the rental companies listed in post 2 of the disABILITIES FAQs thread rent smaller size wheelchairs (like 16 inch wide instead of the more common 20 inch side adult size). I am pretty sure Apple does and Care or Walker may also. I would probably start close to home and see if her doctor or therapists know of any place close to home (especially lending closets). If you are traveling by air, wheelchairs do not count toward your baggage allowance and there is no charge to check them. That way, you would also have one for use in the airport (you can also request wheelchair assistance from the airline when checking in if you don't have a wheelchair).

Thank you for the advice I think I might look into taking one from here.

 

[sleepingbean]

My daughter has an arthritis family condition (Ehlers Danlos) and is in similar boat with swelling, pain, discomfort in addition to possible joint dislocations, so I completely understand your situation. We ended up renting a small wheel chair that was a great size for her (and bright red . We rented it in our home town and took it with us on the plane (handy at the airport where there is a lot of walking and we were able to sling our bags on the back of it, which helped my back so I didn't have to carry backpacks).
The professional grade wheel chair we rented was great because it was so easy to push! So much easier than a stroller. I also have a touchy back an neck, and it didn't bother me. My husband pushed it more often, however, and he is 6'. He said the handles were a little short. I'm 5'4, and it was perfect for me.
We found this was a great solution and she could get out of the chair for rides and they park it and give it back after the ride. Win win and we were able to enjoy the visit. We tried to do a short park evening without the chair, which was a bad idea. She was in so much pain after a short time that it set her back.
I hope you have a fantastic trip!

 

[Julissa82]

So my sister is coming with us and she has RA and we tried walking in the city and she couldn't she was in pain. Soooooooo we were thinking of renting an ECV could my daughter sit on her lap in Disney or is that not allowed? Just trying to save a little bit instead of renting an ECV and a wheel chair. Any ideas?

 

[Mrsjvb]

So my sister is coming with us and she has RA and we tried walking in the city and she couldn't she was in pain. Soooooooo we were thinking of renting an ECV could my daughter sit on her lap in Disney or is that not allowed? Just trying to save a little bit instead of renting an ECV and a wheel chair. Any ideas?

nope. no passengers allowed. it really is a major safety issue.

 

[lanejudy]

No, in fact I believe is it part of the rental agreement both in-parks and off-site vendors that the renter agrees not to carry passengers. And WDW park rules do not allow it. ECVs are designed for just one rider, there is no place for a second person without being in the way and either blocking vision or blocking access to controls.

Compared to an ECV, wheelchairs are fairly inexpensive to rent -- maybe $12 per day, maybe less for a week-long rental offsite. You could probably even purchase one at home for approximately the cost of a weeklong rental, and then you would have it for future needs. Your daughter's insurance might even cover the cost.

Enjoy your vacation!

 

[Betty Rohrer]

I know everyone is different but for me with my back and knee problems push the wheelchair helps me with my walking. hope it might help you also.it was an adult daughter who had a heart attack before we went

 

[Piper]

I was diagnosed with JRA 58 years ago at 11 years old. The doctor said no more PE and I worked in the library instead! The only med I was given was aspirin! Medicine has come a long way since then! My son was diagnosed at age 5 because I recognized the symptoms. He went to Texas Children's Hospital for treatment and was able to go into the Marines when he was old enough. He could do pull-ups with one finger! There are so many more options to help her today!!!

I would definitely see about renting a small wheelchair at home (it is possible your insurance would pay for it.) The airport is very large and it might be difficult for her to navigate it. If you get it at home, you can make sure to get one with the handles at the right height for you.

A WC that if a good height for you will probably help your back. Think about the grocery store. When I could still walk, the grocery cart helped my back and offered support when I was grocery shopping.

 

[sleepingbean]

Shaking my head in agreement with Piper!
And so true that there is so much more now, AND that a small wheelchair can be a huge help in transit, even outside the parks. We rented a small one for our child on our last big trip and there is no way we could have done a fraction of that parks without it. I am so glad we did. Having a small one that we rented at home and brought with was great because it fit her size and it was easy to push, whereas the adult sized rentals are just too huge for a kid.

 

[clanmcculloch]

The wheelchair really doesn't cost much. We rented our 16" chair from Apple and it all went very smoothly. When I looked at the preferred vendors (the ones who can drop off at the resorts without us having to be present), Apple was the cheapest for the 16" chairs.

My DD13 has the same condition as sleepingbean's though she was evaluated for JRA because many of her symptoms also matched that. She definitely needs the wheelchair even when she's not in a flare but she really didn't need it at the airport when not in a flare. When her pain and inflammation were not under control though she did need it everywhere so renting a chair at home would have been better. We didn't and relied on the airline chairs which was ok but they weren't the right size and she had to struggle for the distances where we didn't have the chair so if we ever travel again whens her inflammation and pain are elevated then we'll get a chair at home instead of at our destination.

 

[Suellen]

nope. no passengers allowed. it really is a major safety issue.

True but I see it EVERY day I'm in the parks. It never seems enforced.

 

[Mrsjvb]

True but I see it EVERY day I'm in the parks. It never seems enforced.

I saw it enforced all the time. mostly by CM at ride entrances or custodial staff.

 

[Julissa82]

The wheelchair really doesn't cost much. We rented our 16" chair from Apple and it all went very smoothly. When I looked at the preferred vendors (the ones who can drop off at the resorts without us having to be present), Apple was the cheapest for the 16" chairs. My DD13 has the same condition as sleepingbean's though she was evaluated for JRA because many of her symptoms also matched that. She definitely needs the wheelchair even when she's not in a flare but she really didn't need it at the airport when not in a flare. When her pain and inflammation were not under control though she did need it everywhere so renting a chair at home would have been better. We didn't and relied on the airline chairs which was ok but they weren't the right size and she had to struggle for the distances where we didn't have the chair so if we ever travel again whens her inflammation and pain are elevated then we'll get a chair at home instead of at our destination.

Was she comfortable in the 16" ??? I guess i will be renting both ECV and wheelchair. I talked to my sister and when she wants to walk she'll just park it somewhere and walk and then go back to it when in pain. Hope it works out. I don't mind pushing my daughter when she's in pain. Although I know she'll try to walk it but I want to have it when she starts having pain and swelling. Thank you everyone for the advice !!!!

 

[Suellen]

I saw it enforced all the time. mostly by CM at ride entrances or custodial staff.

Of the probably 200 times I've seen grandma or grandpa or mom or dad with a kiddo on their lap on an ECV I've never once seen a CM tell them to get down.

It always seems so unsafe to me.