Should I try to get my child a wheelchair?

[Who'syourMickey]

Thanks for the info on the light wheelchairs. They are cooler looking. Maybe on good days she could do sports with one. I like the idea of a manual lightweight for many reasons. It would be easy to transport. We could push her. We wouldn't need a van lift. Our van seats seven, so if we needed a lift, I don't know if we all would fit in our van anymore. I will ask around for other PT's that aren't connected to a wheelchair company.

For disney...we could rent a medical stroller or a lightweight pediatric wheelchair and take turns pushing it and after PT we will have a better idea of what she needs.

 

[forr2grls]

Back in December we rented a Maclaren major stroller for our dd.At the time she weighed 90lbs.She was quite comfortable in it.We got a stroller as a wheel chair sticker for it. here's the link http://www.medicaltravel.org/scooter/baby_stroller.html

Paula

 

[djblu883]

the medical stroller is good for a quick temp. solution to your problem! Glad there are so many knowledgable folks here on this thread with the web sites for you to research...wheelchairs are expensive and take time to get all the processes rolling but will be a blessing to come as the years ROLL on...good luck and hope your vacation is a magical one!

Thanks for the info on the light wheelchairs. They are cooler looking. Maybe on good days she could do sports with one. I like the idea of a manual lightweight for many reasons. It would be easy to transport. We could push her. We wouldn't need a van lift. Our van seats seven, so if we needed a lift, I don't know if we all would fit in our van anymore. I will ask around for other PT's that aren't connected to a wheelchair company.

For disney...we could rent a medical stroller or a lightweight pediatric wheelchair and take turns pushing it and after PT we will have a better idea of what she needs.

 

[Who'syourMickey]

I got a call back from dd's doctor and he will RX for PT but he won't RX for a wheelchair. He believes that we should make her walk and if she is in too much pain to walk then the rheumy needs to give her more powerful drugs so she can walk. We really don't want to use more powerful drugs, and shouldn't people have the right to make these kinds of medical choices for their own children? He says it makes him too sad to see a child pigeon holed into a wheelchair and a little box of restrictions. He recommended water aerobics but when I said her eye doc said no getting yicky water near the eyes (public pools) the doc said "see they are pigeon holing her already". What totally wacky people these are. She can still walk. I would be using the wheelchair the exact same way I have been using the wagon and grocery carts for years....He said the range of motion would decrease with a wheelchair. Not any more than what they are now with wagons and grocery carts. This is all easily said but like dude....in stores and stuff she can't walk. She will get tired and sit in the middle of the store. he acted like the wheelchair was for my convenience or something...HE said it's just so easy to put them in the chair so you can do what you need to do..as opposed to what? You can't make someone walk if they can't walk.

He said even if the pt recommended a wheelchair, the rheumy would have to order it and he wouldn't.

Thank God for rentals!

 

[Charleyann]

I got a call back from dd's doctor and he will RX for PT but he won't RX for a wheelchair. He believes that we should make her walk and if she is in too much pain to walk then the rheumy needs to give her more powerful drugs so she can walk. We really don't want to use more powerful drugs, and shouldn't people have the right to make these kinds of medical choices for their own children? He says it makes him too sad to see a child pigeon holed into a wheelchair and a little box of restrictions. He recommended water aerobics but when I said her eye doc said no getting yicky water near the eyes (public pools) the doc said "see they are pigeon holing her already". What totally wacky people these are. She can still walk. I would be using the wheelchair the exact same way I have been using the wagon and grocery carts for years....He said the range of motion would decrease with a wheelchair. Not any more than what they are now with wagons and grocery carts. This is all easily said but like dude....in stores and stuff she can't walk. She will get tired and sit in the middle of the store. he acted like the wheelchair was for my convenience or something...HE said it's just so easy to put them in the chair so you can do what you need to do..as opposed to what? You can't make someone walk if they can't walk.

He said even if the pt recommended a wheelchair, the rheumy would have to order it and he wouldn't.

Thank God for rentals!

Your daughter sounds like my son 3 years ago. He can't make it through a grocery store. He has to take breaks and sit down. He cries all the time with pain in his knees and ankles. Dr's say push him, walk a little each day. Then nodule/ tumor on one ankle and he needed surgery and was in a cast for 6 wks...that was the end of pushing. He requires a wheelchair for endurance and flareup. Gosh, don't you love the powerfu; drug push? Geez, Dr's put my son on tylenol #2 with codeine so he could walk further...never mind he was stoned stupid!

Charleyann

 

[OneLittleSpark]

Who'sYourMickey, have you considered changing doctor? It doesn't sound like this guys listens to you at all, and if he's not listening, how can he give sound medical advice?! I understand that he doesn't want her to lose the ability to walk through lack of use, but surely he doesn't want her to be in agony either. Yes, a chair would be easier for you, but only because it'll be easier for her, and will mean you don't have to use the wagon anymore.

I'm glad you got the PT referral, hopefully that will prove fruitful. If it looks like it's not going your way: get pushy! Sometimes that's the only way to get heard (or at least that's what I've found with the NHS in this country).

Good luck, I hope you get what you need!

 

[Who'syourMickey]

I just changed her to this doctor. The last doctor is the one who let her go with undiagnosed arthritis and just said she wanted to be picked up to manipulate me. No ANA, no testing...just foot pain...must equal manipulating to be carried. As a result her uveitis went undiagnosed an extra fourteen months. So...looks like we are getting some winners in the Dr. dept.

I can't wait to have her do PT though. At least the doc did RX for that and then maybe I can get a referral for a wheelchair friendly doctor from the physical therapist, and maybe they will have some ideas for how we can make her life better.

 

[LindsayDunn228]

It's not that bad. If the person can walk thru the screener, they do that and the screening people check over the wheelchair without them in it. My DD can't get out of her wheelchair and we really don't think it's that bad. A little more time, but nothing major.

Just FYI, you literally get felt up at the Atlanta airport security. Not exactly a fun experience.

 

[Who'syourMickey]

Speaking of Georgia and OT....I LOVE their food. We stopped off on our drive through and ate somewhere food we didn't recognize but it was sooo good.

Maybe if we rent a pediatric manual wheelchair or stroller we won't have as much difficulty. I am sorry to hear that you had so much trouble with security.

 

[6gr8kidz]

Ok, I am going to state my opinion on what Dr.s do to parents. I have an 8 yr old daughter that has JRA and my 4 year old son lives with reoccuring "reactive arthritis." Last Christmas we went to Disney for 4 days. I called the rheumy to ask for a script for a wheelchair. I wanted it for the Arthritis walk in May and our Vac. in Dec. I was told the same thing. They don't put "these kids in wheelchairs anymore." I didn't want anything full time just for long distance walking.

My daughter at the time was taking Methotrexate and Enbrel which are serious immune suppressing drugs. The Dr.s are afraid parents are going to use it as a crutch. Whatever...I have 6 kids and it is hard enough taking them places let alone having a daughter who starts her day out with tons of energy and no stiffness or swollen joints, but in a moments notice go into a flare so bad that she can't finish her day.

I finally got my reg pediatrician to write a script for a wheelchair, I asked for the option of buying mine because the rental seemed like a pain to me. I opted for an adult chair which she can grow into if need be. We used the chair one time, during the arthritis walk when both my 4 and 8 year olds had a serious flare.

When we went to Disney we used our double stroller and the 4 year old and my 8 year old who is very tiny also. She weighs 42 pounds. They traded places when they got tired of sitting or walking.

We were able to get a GAC at Epcot but MK told me we didn't need a GAC because she could stand very long. If people only knew what these kids went through on a daily basis, it would break their heart.

I would say bring a comfortable stroller for her.

 

[Who'syourMickey]

I am not a fan of Doctors either to begin with. I will use alternative medicine whenever possible because it makes more sense to me. I don't buy into their pride based "we have eliminated wheelchairs through the use of powerful immunossuppressive drugs" line of thinking. No one is going to tell me that my child doesn't get a wheelchair when she needs one. I would move heaven and earth to get my children what they need and not having an RX wouldn't get in my way. I consider myself Dr. MOM. I have treated my children out of the healthfood store for every minor and even some complicated ailments for 18 years. I've figured out a few things that stumped docs before. So my track record is pretty good, especially when it counts. If I really believed my daughter needed an RX and the doctor didn't write an RX for it...I would'nt be against bypassing him completely and go to mexico for it. Same with a wheelchair, I would get one used or find a way. I am in charge, they aren't. I mean that in a nice way of course. On the other hand that doesn't mean that I don't listen to what they have to say. I will do pt and encourage my child to challenge herself. But the whole "make her walk" thing the doc said is ridiculous.

for all of us mama's who have to deal with politics and red tape just to get our children what they need.

Shelly

 

[Who'syourMickey]

on a lighter note. Since all of the arthritis issues, I have gotten nicer shoes for the whole family for our trip. I won on ebay 2 pair of hot pink birkenstalks for the two little girls and just an hour ago I won a pair of black Keen's sandles for my son. Hopefully everyone will have really the finest pairs of shoes I can get so their feet will be loving them. I am starting to walk an hour a day so I can be in shape for Disney My birkies are slip on, so I wonder if they will stay on well enough in the parks, and so are my moms birkies.

 

[SueM in MN]

IWe were able to get a GAC at Epcot but MK told me we didn't need a GAC because she could stand very long. If people only knew what these kids went through on a daily basis, it would break their heart.

I would say bring a comfortable stroller for her.

Just to clarify for other readers, you only need to get a GAC in one park; the GAC issued in one WDW theme park will be valid in any WDW theme park.

GAC= Guest Assistance Card - more info about these in the disABILITIES FAQs thread.

 

[SueM in MN]

Just FYI, you literally get felt up at the Atlanta airport security. Not exactly a fun experience.

Maybe it helpd that we tell the screener that she is known to hit

 

[LindsayDunn228]

Maybe it helpd that we tell the screener that she is known to hit

Tee hee, while funny and probably well worth it in your situation, it doesn't help me much. The "I normally have someone take me to dinner before this kind of activity" doesn't even get a smile out of them.

Blech. Hands down, I hate the Atlanta airport for MANY reasons.