[angelkisses0102]

My DS has JIA aka JRA (juvenile rheumatoid arthritis) and has trouble walking distances. So, we still use his stroller but he is growing out of it at almost 6 years old. He is a thin guy (only about 37/38 pounds) but he is pretty tall.

I've started looking for 'big kid' strollers but am clueless as to where to really look other than looking at regular stroller sites. And that is overwhelming.

Any ideas?

Thanks!

[crick]

you might try those jogging stroller sites? Seems to me those strollers are bigger than regular ones?

Hopefully Suz knows since I'm sure they looked into all this and had one before they got E's wheelchair.

[linda512]

Does your rheumatologist or hospital have a social worker or physical therapist you can talk to? They can help you find one and it should also be covered by insurance.
Good luck.

[Nevada Jen]

You most definately want the Maclaren Major. It goes up to 110 pounds and is an umbrella stroller. I think it weighs 11 pounds and its nice and sturdy. Medicaid should cover it but if you do not want to go through the trouble of that, its fairly reasonably priced. Google it. prices vary substantially. You won't believe you ever lived without it.

[momraine]

You might also consider a wheelchair. When we got dd's first wheelchair she could still sit in a stroller, but she hated that people talked down to her more. We borrowed a wheelchair and she saw a difference in how people saw her and treated her. Some people still talk down to her or ignor her in a wheelchair, but not as bad as in a stroller. She also likes that while I can push her, she can also move herself if she wants. She is not always in the wheelchair, just for long distances and when she has a problem with her legs and needs to rest them. We got one that grew with her. She was three when we got it, and we are just now looking at a new one and she is almost ten. For a kid who is not a full time user you can get a folding one that fits easily in cars. Insurance does cover manual wheelchairs pretty well. (ds's power chair is a whole nother story!)

[angelkisses0102]

Thanks for the ideas...I will have to check with our insurance...never thought of that. We don't have/qualify for medicaid but I think it's great that they cover the cost. Yikes...I hope insurance covers the cost...I just looked up the Maclaren and it's about $500! Although that is exactly what I am looking for.

We go to the rheumy on the 20th...so I'll ask him. He's not in PT yet because he's still flaring pretty bad right now...but I could ask the feeding therapist if she could set me up with a PT just to ask some questions. It was actually one of the PT's at the therapy group that suggested we look into JIA...the ST noticed his knee while doing his feeding therapy and called in a PT. (GREAT GROUP!)

And I know we should look into the wheelchair but I am so mentally unable to grasp that at this point. I know we may end up needing it...but for now the stroller is good. Plus with DS's sensory issues...he likes the security of his stroller.

Thanks again!
Karen

[SuzBerg]

Angelkisses - I'm glad you are having luck finding a stroller. This was a HUGE issue for us a couple of years ago. Our Em was tiny so really she still could fit in a stroller but we were kind of in the same situation as Momraine. People treated Em like a "baby", it was not a good thing for her - that is why we decided to go with a wheelchair instead of a stroller when she was 5 turning 6.

I really do like the wheelchair for E, she can move it herself and it is helping her learn to be independent. She does not need to use it all the time, usually just for trips to Sea World, Six Flags, the mall etc anything where lots of walking is required. For me it was a difficult decision - it was kind of like deciding between her being a "baby" in a stroller or a "sick kid" in a wheelchair. Not really things I wanted to choose between.

I know it is a really tough thing to face and if you are not ready for a wheelchair and the stroller works well for your son do not feel pressured to get one. I just wanted to share our experience. Best Wishes - Suz

ETA: I forgot one other idea - it doesn't really take the place of a stroller or wheelchair - But this year we got E a "Power Wheels - Barbie Jeep" for Christmas, it has been great for her when other kids are riding bikes or skating and it's perfect for in the neighborhood when we are walking the dog or going to the neighborhood pool etc. I really wish we had gotten it sooner!

[Nevada Jen]

Convaid actually makes a very cool stroller wheelchair that comes with wheel chair wheels you can put on it so they can drive themselves but its also a stroller. Private insurance did pay for our COnvaid. It folds as small as the Maclaren but its about 40 pounds. I remember how hard it was to admit we needed a wheelchair for DD at age 3 but it really made a huge difference in how she was treated. Our insurance even paid for a power chair. That is very cool looking. Unfortunately, my DD had a stroke after it was ordered but before it arrived. So we have a 20K wheelchair rotting in the garage.
I get a lot of my stuff at an online store called adaptivemall. Add the dot com to find the store.

If you want to wait and see how everything shakes out before you make any big decisions the regular Maclaren goes to 55 pounds. The one that is the least expensive(mesh seat umbrella type) also works for a slightly taller kid.

Finally, the way that we got wheelchairs for my DD was through her regular pediatrician giving us a referral to the durable medical equipment guy. You could call your insurance company and see what the coverage is for durable medical equipment and who the referral needs to come from.

I know it is a huge mental step to make but getting it does not mean you have to use it but you will probably be pleasantly suprised how much freedom it gives you that you did not even realize you were missing once you have a chair or a suitable stroller.

Suz, we have a couple of power wheels and I never considered charing them up so my DD can sort of hang with the other kids. I will charge them right now!

[momraine]

Sorry Karen, I forgot that you were a surprise special needs parent, you have adapted so well, I sometimes forget you are not like those of us who adopted special needs on purpose. For us the decision was easier because dd was totally annoyed at people treating her like a baby. DS was already using a chair when we got him. I do know that most jogging strollers go much bigger than normal ones. You might be able to find one of those on freecycle or craigs list or a thrift store to use while you deal with insurance, which can take six months easily.

[Nevada Jen]

Lorraine! I finally clicked on one of the videos of your DD's dance recital! Is that her in the pink tutu with her legs on also? Or just in the green? SHe is really really good. super graceful and she just looks good on stage! I am off to my DS's dance recital right now!

[momraine]

Yep, both are her, her dance teacher (whose daughter is the baby dancer with the wings) is hiding behind the "mirror" to help her with her quick change. She also dances ballet, tap and Jazz with her legs on. I need to upload the rest of her dances, but some were too long. She does clogging without legs, wearing two different size shoes on backwards. She is hoping to start pointe in the fall with specially made legs.

[Nevada Jen]

She really is amazing. Super graceful. Especially without her legs. Do you get your legs through Shriners? (add that to the list of questions I never thought I would ask!).

DS did great at his dance recital. (Good thing because the last one was not so good). He actually had the all important "Toothpaste solo" and he did not even tell us ahead of time! Seeing him out there makes me realize how much my DD is missing by not having those opputunities.

[momraine]

Thank you, Dance is her passion. She lives for it. I am glad she gets to do it. She gets her legs from Texas Scottish Rite, which while it's not a Shriners hospital, is supported by them if that makes any sense. They are awesome. I have a son who dances too, I think he is in some of the dances there, I think I actually put the boys dance up, which has two of my sons in it. My oldest just did it to be nice to his brother, he is not really into dance. My youngest would love to try and they would let him, but his emotional problems are just too much to deal with, so I can't let him go.

[akg1229]

There's also one caled the cruiser and axiom the cruiser doesn't look quite so much like a stroller, but breaks down like one. If you don't have medicaid a lot of times if you have services like CAP in NC they will pay for it. Also, some independent living places will help you to if you can prove how it will make him more independent in life. Just an idea.

[angelkisses0102]

Thanks for the responses.

My insurance will cover durable medical equipment...up to $1500 per year...so we are good there. The pediatrician will process the referral...but the rheumy asked me to wait a month. We are adding another medication (Enbrel) to DS's med cocktail (methotrexate, folic acid, naproxen) and he feels we may not even need it in a few weeks. So as soon as the insurance company stops dragging their feet on the Enbrel approval...we will start those injections. Enbrel is expensive (about $750 a month) so of course they are making us get prior approval...which we will get based on his JRA symptoms and the course of meds already taken.

Fingers crossed we won't even need this...

Thanks again!