Adaptive stroller?

[Guest guest]

Hi everyone

My 4 1/2 year old had Chiari decompression 3/07. He is having tethered cord

surgery 2/11/08 at TCI. He has a hard time with walking distances and the Rehab

doctor prescribed an adaptive stroller.

We have used a regular stroller up to now but he is getting too big.

I've called several of the DME companies listed in our insurance and haven't had

much luck with them following up, etc. I want something lightweight and easy for

me to handle and fold/put in the car since I also have tethered cord issues.

Does anyone have any suggestions, brands they prefer, how to get the insurance

to get it, dealers you might have used, etc?

Thanks!!

AG

[Guest guest]

AG --

usually in order to get your insurance co to pay for DME, you have to

contact them and find out the vendors they will cover to provide it. Once

you contact the vendor you want to use, they will bring you in for your

child to be " fitted " and find the stoller that fits him best - either stock

or one that has to be made that is more adjustable and will last him longer

as he grows. When dealing with vendors they pretty much all treat you like

crap, dont' return calls, etc. I just ordered my new w/c and they gave me an

estimated date of delivery of Jan 10 on Jan 9. About a week later I called

and emailed for an updated date of delivery and got nothing. Finally one day

I called and got someone and found my w/c had been there (since when, I

don't know) but that it hadn't been put together - the frame is rigid, so

there really isn't much " putting " together to do except put the tires on the

wheels, install my solid back and slide the wheels on with the push of a

button. I could use any vendor I wanted according to my insurance. I went

to the best vendor in ATL. Granted this experience was better than my first

w/c purchase, but still not great, like they should be.

Myself and all of my friends at peer support just figure that vendors treat

their clients so shitty b/c they know there isn't anywhere else for us to

go. It has generally been mandated by your ins co. They also have a

guaranteed client base -- there's disabled people who need DME. They know

you HAVE to have the equipment. It not like a good that you can go without,

so what are you going to do? Pay out of pocket? Yeah right -- when a

wheelchair costs $5000 +/- depending on what options you add. Granted you

can get them a bit cheaper than retail (or what they bill insurance) by

going to a supply catalog. Supply catalogs are great for people without

insurance or to buy things insurance won't cover, but $2500 is still a bit

to handle for a new w/c (and that is base price w/o options).

If you want to purchase it yourself, you can go to the following sites that

are catalogs of DME - all kinds of items. For a stroller, I think your best

bet would be Sammons Preston Roylan. SPR has the most extensive catalog of

goods. It is bigger than a JCP catalog. It is also most medical

practitioners use. Not necessarily the cheapest, but definitely the most

comprehensive. The others you might want to check are Sportaid and Care.

A vendor might also be able to tell you if he can use a wheelchair - that

way he can get around on his own for longer distances, yet you can still

push him if you are together. I really don't know at what age they change

kids over from strollers to w/c they can use on their own. Sometimes the DME

people can direct you to better or more appropriate supplies b/c they do

this everyday. Whereas, MDs don't know the ins and outs of equipment and

make a general recommendation. If you get conflicting advice, you can always

request an appointment with a seating clinic. Usually your vendor will meet

you at your appointment. These are therapists that do nothing but help you

select the best seating equipment for your needs and measure your son,

etc. If your insurance requires referrals, you will have to get one done to

go to the seating clinic and see their therapist. With your vendor right

there, he/she gets the info about the equipment you select and works with

your seating clinic therapist ot get it ordered and make sure it is covered.

Sometimes going to a seating clinic is also helpful b/c you have a therapist

recommending the equipment, rather than you picking out what you think you'd

like. Especially for first time buyers - who aren't familiar with equipment

or the companies that make them. Even then you could still not think your

first equipment purchase was great. B/c for your initial purchase you don't

now if they're telling you the truth or has a bias towards a certain

supplier (my first one did). It is when you purchase your second piece of

equipment that you really know what you like and don't like and are able to

get a piece of equip that you are really happy with.

Wish I had better news. If you have any other questions, just ask.

Jenn

>

> Hi everyone

> My 4 1/2 year old had Chiari decompression 3/07. He is having tethered

> cord surgery 2/11/08 at TCI. He has a hard time with walking distances and

> the Rehab doctor prescribed an adaptive stroller.

> We have used a regular stroller up to now but he is getting too big.

> I've called several of the DME companies listed in our insurance and

> haven't had much luck with them following up, etc. I want something

> lightweight and easy for me to handle and fold/put in the car since I also

> have tethered cord issues.

> Does anyone have any suggestions, brands they prefer, how to get the

> insurance to get it, dealers you might have used, etc?

> Thanks!!

> AG

>

>

[Guest guest]

In a message dated 2/5/2008 9:41:59 P.M. Eastern Standard Time,

jlbobin@... writes:

A vendor might also be able to tell you if he can use a wheelchair - that

way he can get around on his own for longer distances, yet you can still

push him if you are together. I really don't know at what age they change

kids over from strollers to w/c they can use on their own. Sometimes the DME

people can direct you to better or more appropriate supplies b/c they do

this everyday.

We just ordered a wheelchair for for distance use, it's a cross

between a transport/regular wheelchair and a stroller... it is lightweight and

from

flexible material like a stroller, folds up in half like a stroller for easy

transporting, has large wheels that can be used on for a child to push, or

with without to use it as a transport chair... Here is a pic of it...

_http://www.convaid.com/productguide.php_

(http://www.convaid.com/productguide.php)

He is getting the second one, the convertible, but it looks exactly like the

first one, the EZ rider without the pushwheels. is fine for short

distance walking over short times, he needs this for day trips with lots of

walking or for brisk walking, especially in warmer weather when his endurance

goes down.

The company we used was called National Seating & Mobility in Huntington

Valley, PA and they are a subcontractor for Apria, and when I emailed the

vendor

contact we were working with, he responded to me the next day, so some

places do provide good service, not that that helps when things are bogged down

waiting for insurance approval, but...

Connie

Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

conni60640@...

Our website: _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

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