Re: thanks for helping - equipment for tyler

[Guest guest]

> Thanks everyone for the help. As I started looking and investigating at

some of these places I couldn't believe the prices! I'm sure you all know, but

right now Insurance and other funds will not help us since we don't have a dx

yet. So in a few weeks we go to Mayo and I'll just wait until then. I'll make

do,

we really can't get a new car seat until Tyler is 20 lbs + which really concerns

me since he has been hold 15 lbs for 4 months now.

>

You really shouldn't need a specific diagnosis if there is some delay or need

for equipment. Insurance should pay if there is delay. The diagnosis could

just be DD--without listing a cause. Also, the 0-3 programs should help with

this too.

[Guest guest]

> Thanks everyone for the help. As I started looking and investigating at

some of these places I couldn't believe the prices! I'm sure you all know, but

right now Insurance and other funds will not help us since we don't have a dx

yet. So in a few weeks we go to Mayo and I'll just wait until then. I'll make

do,

we really can't get a new car seat until Tyler is 20 lbs + which really concerns

me since he has been hold 15 lbs for 4 months now.

>

You really shouldn't need a specific diagnosis if there is some delay or need

for equipment. Insurance should pay if there is delay. The diagnosis could

just be DD--without listing a cause. Also, the 0-3 programs should help with

this too.

[Guest guest]

> I'm sure you all know, but

> right now Insurance and other funds will not help us since we don't

have a dx

> yet.

That is what I used to think, too, but it isn't true. Talk to your

hospital's seating clinic, and see what they recommend. I'm betting

your insurance will pay for it, because the therapists will be able

to document the need for it.

A diagnosis does not matter that much when it comes to getting

equipment - if the child has symptoms and problems, then they can get

the equipment. Another child with the same diagnosis who does not

have serious problems, would not be able to get the equipment.

You can call and ask them questions on the phone, and see if it's

worth going. I'm betting it will be worth going to an appointment,

but call first, and see what they say. Explain your concerns about

not having a diagnosis, but your child needs help, and see what they

say.

Also - there may be organizations in your area that loan out

equipment. We borrowed a Maclaren stroller for our son last year,

from an organization here. In a couple of weeks our son's wheelchair

will be here, and then we will return the stroller so another family

can use it.

I found out about the organization from a PT at Children With Special

Health Care Needs. Shriners hospitals sometimes loan out equipment

for a short time, and they could do the equipment eval too. Easter

Seals sometimes has stuff, too. Ask everyone, someone will know of a

program somewhere.

If all else fails, you might try eBay, or go to Toys R Us and see if

there are inventive ways you can modify the regular carseats to work

how you want them to. Such as adding foam blocks (covered in fabric,

and velcroed into place). If you use foam blocks, you can cut it and

shape it using an electric knife. A PT or OT might have good ideas

on how to make that work. We have gotten all sorts of ideas from

therapists on how to improvise things.

Lynne

[Guest guest]

> I'm sure you all know, but

> right now Insurance and other funds will not help us since we don't

have a dx

> yet.

That is what I used to think, too, but it isn't true. Talk to your

hospital's seating clinic, and see what they recommend. I'm betting

your insurance will pay for it, because the therapists will be able

to document the need for it.

A diagnosis does not matter that much when it comes to getting

equipment - if the child has symptoms and problems, then they can get

the equipment. Another child with the same diagnosis who does not

have serious problems, would not be able to get the equipment.

You can call and ask them questions on the phone, and see if it's

worth going. I'm betting it will be worth going to an appointment,

but call first, and see what they say. Explain your concerns about

not having a diagnosis, but your child needs help, and see what they

say.

Also - there may be organizations in your area that loan out

equipment. We borrowed a Maclaren stroller for our son last year,

from an organization here. In a couple of weeks our son's wheelchair

will be here, and then we will return the stroller so another family

can use it.

I found out about the organization from a PT at Children With Special

Health Care Needs. Shriners hospitals sometimes loan out equipment

for a short time, and they could do the equipment eval too. Easter

Seals sometimes has stuff, too. Ask everyone, someone will know of a

program somewhere.

If all else fails, you might try eBay, or go to Toys R Us and see if

there are inventive ways you can modify the regular carseats to work

how you want them to. Such as adding foam blocks (covered in fabric,

and velcroed into place). If you use foam blocks, you can cut it and

shape it using an electric knife. A PT or OT might have good ideas

on how to make that work. We have gotten all sorts of ideas from

therapists on how to improvise things.

Lynne

[Guest guest]

Shriners hospitals sometimes loan out equipment for a short time, and they could do the equipment eval too.

Yes, they do, they also donate equipment to families. The PT at the Chicago hospital gave us a Rifton Gait Trainer last spring. We plan on returning it to them when Chelsea outgrows it. She has also gotten equipment on loan from school as well, mostly before she was diagnosed.

Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)