Re: Hello...some of you may remember me from the other site..need help!

[Guest guest]

Lee,

We also go to Shriners in Portland. Same problem here too. Lilee has A-Typical

CF, and they will not pay for hers. She is also in a sz 2. I will be needing to

order some here within a month or so too. I remember Dr. P saying they had funds

to buy the s a while back, so that is my suggestion to you, as I am

going to have to ask him also. Maybe we can meet some time if you are near? PM

me and we can exchange #s if you want. We are friends of Kori also. Shes a real

great help!

Christee

Mother of...

*Josh~Learning/Speech Delays (9)

**Aspen~ Bilateral Metatarsus Adductus (6)

***Dylan~PTSD/Anxiety (4)

****Lilee~A-Typical UCF w/Plantaris ® & Metatarsus Adductus (L)

*P/M Brace 16-18/24.Struggling w/pressure sores (8 months)

Concidering Dobbs bar & braces

---------------------------------

Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

[Guest guest]

Actually Dr. P wrote me back today saying he can NOT afford shoes

for . Budget is low, needs are high..he had promised me shoes a

while back...I'm bummed.

>

> Lee,

> We also go to Shriners in Portland. Same problem here too. Lilee

has A-Typical CF, and they will not pay for hers. She is also in a

sz 2. I will be needing to order some here within a month or so too.

I remember Dr. P saying they had funds to buy the s a while

back, so that is my suggestion to you, as I am going to have to ask

him also. Maybe we can meet some time if you are near? PM me and we

can exchange #s if you want. We are friends of Kori also. Shes a

real great help!

>

>

> Christee

> Mother of...

> *Josh~Learning/Speech Delays (9)

> **Aspen~ Bilateral Metatarsus Adductus (6)

> ***Dylan~PTSD/Anxiety (4)

> ****Lilee~A-Typical UCF w/Plantaris ® & Metatarsus Adductus (L)

> *P/M Brace 16-18/24.Struggling w/pressure sores (8 months)

> Concidering Dobbs bar & braces

>

>

>

>

>

>

> ---------------------------------

> Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

>

>

[Guest guest]

I know...Joyce said she felt bad but that people are just going to

need to purchase their own shoes until more money comes along. She

remembered having told me that they would buy shoes...just

can't afford them right now. Markells DO NOT work for us at all even

after 2 surgeries...so if I can't work out a deal with Mr.

or come up with a pair of shoes somehow..we have to go into AFO's.

>

> Oh, that sucks! Now I am worried! Cause Lilee cant wear the

Markells! And I cant afford the s!

>

> Christee

> Mother of...

> *Josh~Learning/Speech Delays (9)

> **Aspen~ Bilateral Metatarsus Adductus (6)

> ***Dylan~PTSD/Anxiety (4)

> ****Lilee~A-Typical UCF w/Plantaris ® & Metatarsus Adductus (L)

> *P/M Brace 16-18/24.Struggling w/pressure sores (8 months)

> Concidering Dobbs bar & braces

>

>

>

>

>

>

> ---------------------------------

> Yahoo! Mail

> Use Photomail to share photos without annoying attachments.

>

>

[Guest guest]

Would the portland shriner's be willing to work with Dr Dobbs at the

St Louis shriners? He has his own brace-made with afo's so that they

are form fitting to the foot. maybe this would be an option?

kathleen

> >

> > Lee,

> > We also go to Shriners in Portland. Same problem here too.

Lilee

> has A-Typical CF, and they will not pay for hers. She is also in a

> sz 2. I will be needing to order some here within a month or so

too.

> I remember Dr. P saying they had funds to buy the s a

while

> back, so that is my suggestion to you, as I am going to have to

ask

> him also. Maybe we can meet some time if you are near? PM me and

we

> can exchange #s if you want. We are friends of Kori also. Shes a

> real great help!

> >

> >

> > Christee

> > Mother of...

> > *Josh~Learning/Speech Delays (9)

> > **Aspen~ Bilateral Metatarsus Adductus (6)

> > ***Dylan~PTSD/Anxiety (4)

> > ****Lilee~A-Typical UCF w/Plantaris ® & Metatarsus Adductus (L)

> > *P/M Brace 16-18/24.Struggling w/pressure sores (8 months)

> > Concidering Dobbs bar & braces

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

> >

> >

[Guest guest]

Hi Lee! I'm very busy, busy so this will be short: WE have 3's, but you probably

need 4's or he'll just grow right out of them. However, if you want them , I'll

send them. I will ask that they be sent back after you are done with them

because they are Gabe's " first shoes " and I'd like to keep them to show him

later. The shoes he's in now, I don't mind giving up permanently, but the first

ones... in lue of having first baby shoes to keep... Well, you know... Call me

if you want them. . I'm at school Mon, Tues, And Thurs from 5-9.

Also, Kori, if you're reading this, I've meant to write you back, but it's been

CRAZY around here. I don't go to school tomorrow... I'll post then.

Lee wrote: I am posting here because Kori/Frogaboo and I

talked today and she

referred me to this site. My name is Lee and I have a 14 month old

son named . has clubfoot in his left foot and it has been

diagnosed as positional. It has been a LONG road with 2 tenotomys

and a bad doctor in the beginning...below is my original post:

Some of you may remember me..I come and go as my son has issues with

his foot. Our newest issue is that Shriners had agreed to pay for his

shoes, which Ponsetti said he NEEDED since his foot was SO

difficult(2 surgeries by a year old still bad foot). Well we have

had

those shoes for months now and LOVE them! His foot has completely

turned around. So we were informed by Shriners that they will NOT be

ordering another pair of shoes for us and we need to start

getting back into the Markells...it is NOT working. They

REFUSE

to buy more s, they say their AFOs are the same thing..WRONG.

I am in fear now that his foot is going to regress again..my worst

nightmare...

So I was wondering if anyone had a pair of whatever size comes after

2

in the s that they are willing to part with? I'm waiting to

hear back from Dr. P to see if he will purchase them for me(we can

not

afford them)because he had said he would do it before.

Or do you have any other recommendations for me to find a pair of

shoes?

Thanks everyone,

Lee

[Guest guest]

Lee,

A couple ideas - 1) appeal to your insurance company, get letters from

Dr. P stating the medical necessity. Are your docs at Shriners really

convinced they don't see the medical necessity or is it just because

Shriner's can't pay for the PM's? If they are willing to write you a

letter for the express purpose of appealing to your insurance company

that would be helpful. 2) Talk to your doctor about the Dobbs brace -

this is a viable alternative to just AFO's on their own. Check it out

here:

http://members.tripod.com/ponseti_links-ivil/sitebuildercontent/sitebuilderfiles\

/dobbs_brace_guide2.pdf

This brace is designed by Dr. Dobbs in St. Louis. Dr. Dobbs

practices at the Shriners in St. Louis, so it should be relatively

easy for the Shriners you are at to get in touch with him and find out

how to get the brace for your son. He can also be reached directly at

mattdobbs @ earthlink.net (minus the spaces).

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 14hrs/day)

> >

> > Oh, that sucks! Now I am worried! Cause Lilee cant wear the

> Markells! And I cant afford the s!

> >

> > Christee

> > Mother of...

> > *Josh~Learning/Speech Delays (9)

> > **Aspen~ Bilateral Metatarsus Adductus (6)

> > ***Dylan~PTSD/Anxiety (4)

> > ****Lilee~A-Typical UCF w/Plantaris ® & Metatarsus Adductus (L)

> > *P/M Brace 16-18/24.Struggling w/pressure sores (8 months)

> > Concidering Dobbs bar & braces

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Yahoo! Mail

> > Use Photomail to share photos without annoying attachments.

> >

> >

[Guest guest]

I got some shoes which is great...Shriners refused to write a letter

saying they do not see the medical necessity. They want to do AFO's

with a fixed bar. Maybe what Dr. Dobbs does? I want s

because in all honesty we have had enough set backs and as wonderful

as the Dobbs Brace sounds...I am super comfortable with s

since they completely turned s foot around.

> > >

> > > Oh, that sucks! Now I am worried! Cause Lilee cant wear the

> > Markells! And I cant afford the s!

> > >

> > > Christee

> > > Mother of...

> > > *Josh~Learning/Speech Delays (9)

> > > **Aspen~ Bilateral Metatarsus Adductus (6)

> > > ***Dylan~PTSD/Anxiety (4)

> > > ****Lilee~A-Typical UCF w/Plantaris ® & Metatarsus Adductus

(L)

> > > *P/M Brace 16-18/24.Struggling w/pressure sores (8 months)

> > > Concidering Dobbs bar & braces

> > >

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Yahoo! Mail

> > > Use Photomail to share photos without annoying attachments.

> > >

> > >