Re: I Need Advice - kinda long sorry

November 18, 2005

My daughter Kelsey is a patient of Dr. Von Stein's in Cincinnati and I trust

her and have been very happy with Kelsey's treatment. Dr. Dobbs at Shriners in

St. Louis is a leader in the field of clubfoot treatment so I am sure you could

not go wrong with him. The great thing about Shriners is that you do not have

to pay for any of the care, braces etc. Either way, I think you would be in

excellent hands.

Jenni

Tia on wrote: Here's some background.

Austin has bilateral clubfoot. It was definitely detectable on our

ultrasound but we were not told about it. I just watched the video

the other night and saw it. So, he was casted at 2 weeks of age. He

couldn't be casted before then b/c of other medical issues

(premature). His ped. ortho. sug. at Riley(now at St. s in

Indiana) is Dr. Didelot. I have been 100% happy with him up until

this point. He had 9 weeks of casting and then received the DBB.

Austin is a little Houdini(doc. words) and we couldn't keep a good

hold in the DBB so he ordered an AFO brace. Now, here's where the fun

begins. In all of the research I've done over the past few days and

the information you wonderful ladies have given me, I've learned that

1. Dr. Didelot is a great doctor and 2. The AFO brace is worthless

b/c it doesn't hold the correction. So, Thursday 11/10 we saw Didelot

and that's when he ordered the AFO. We couldn't get the AFO until

Monday 11/14. He didn't wear the DBB during this time b/c Didelot

said not to put him through it. Flash forward to today. Tuesday night

we noticed regression and it has continued since then. His feet are

almost half way back to the day he was born. I called Didelot's

office yesterday and his nurse calls me today to tell me that he

doesn't want to see Austin until his next schuduled appt.(5 more wks)

and to continue with the AFO. Also that if he needs surgery, he won't

do it until Austin is 10 months of age. Um, wtf? I'm confused here.

Let's let this little 4 month old regress even more over 5 more

weeks?!

Here's where I need advice.

I need to call my insurance to see what kinda coverage we have as far

as out of state. I would like to go to Cincinnati if coverage allows,

but if not, Shriners in St. Louis(I think that's where it is.) Is one

place better than the other? What do you suggest. I hate to say it,

but I think Dr. Didelot just lost a patient.

Thank You!

Tia

Mom to & Austin

November 18, 2005

Tia-

I am sorry to hear the Dr Didelot won't see you for 5 weeks-I

believe it would be best for you to go to nati(if insurance covers

it) or shriners-as their coverage is provided free of charge. Talk

to your insurance company-tell them that your son needs additional

care that can not be provided by a local doctor and you need a

specialist. Explain to them how you will save them money by avoiding

the surgery that Didelot believes may be needed at 10months!! These

insurance companies love to hear about money being saved. We see a

non-coverage doctor for our son's hand surgery-our insurance told us

since no one in a 50 mile radius could do/perform the procedure-they

approved us right away! maybe you have that clause!!

best wishes,

kathleen

>

> Here's some background.

> Austin has bilateral clubfoot. It was definitely detectable on our

> ultrasound but we were not told about it. I just watched the video

> the other night and saw it. So, he was casted at 2 weeks of age.

He

> couldn't be casted before then b/c of other medical issues

> (premature). His ped. ortho. sug. at Riley(now at St. s in

> Indiana) is Dr. Didelot. I have been 100% happy with him up until

> this point. He had 9 weeks of casting and then received the DBB.

> Austin is a little Houdini(doc. words) and we couldn't keep a good

> hold in the DBB so he ordered an AFO brace. Now, here's where the

fun

> begins. In all of the research I've done over the past few days

and

> the information you wonderful ladies have given me, I've learned

that

> 1. Dr. Didelot is a great doctor and 2. The AFO brace is worthless

> b/c it doesn't hold the correction. So, Thursday 11/10 we saw

Didelot

> and that's when he ordered the AFO. We couldn't get the AFO until

> Monday 11/14. He didn't wear the DBB during this time b/c Didelot

> said not to put him through it. Flash forward to today. Tuesday

night

> we noticed regression and it has continued since then. His feet

are

> almost half way back to the day he was born. I called Didelot's

> office yesterday and his nurse calls me today to tell me that he

> doesn't want to see Austin until his next schuduled appt.(5 more

wks)

> and to continue with the AFO. Also that if he needs surgery, he

won't

> do it until Austin is 10 months of age. Um, wtf? I'm confused

here.

> Let's let this little 4 month old regress even more over 5 more

> weeks?!

> Here's where I need advice.

> I need to call my insurance to see what kinda coverage we have as

far

> as out of state. I would like to go to Cincinnati if coverage

allows,

> but if not, Shriners in St. Louis(I think that's where it is.) Is

one

> place better than the other? What do you suggest. I hate to say

it,

> but I think Dr. Didelot just lost a patient.

>

> Thank You!

> Tia

> Mom to & Austin

>

November 18, 2005

Tia,

One thing you might want to consider is trying to talk to Dr. Didelot

directly. Just to confirm what you've been told -- sometimes things

get lost in translation. If he didn't get the full message about the

fact that Austin's feet are visibly relapsing that could be why he is

not wanting to see you sooner. Otherwise, I think you would be in

good hands either way, I've heard only good things about Dr. VonStein

and of course I highly recommend Dr. Dobbs.

> >

> > Here's some background.

> > Austin has bilateral clubfoot. It was definitely detectable on our

> > ultrasound but we were not told about it. I just watched the video

> > the other night and saw it. So, he was casted at 2 weeks of age.

> He

> > couldn't be casted before then b/c of other medical issues

> > (premature). His ped. ortho. sug. at Riley(now at St. s in

> > Indiana) is Dr. Didelot. I have been 100% happy with him up until

> > this point. He had 9 weeks of casting and then received the DBB.

> > Austin is a little Houdini(doc. words) and we couldn't keep a good

> > hold in the DBB so he ordered an AFO brace. Now, here's where the

> fun

> > begins. In all of the research I've done over the past few days

> and

> > the information you wonderful ladies have given me, I've learned

> that

> > 1. Dr. Didelot is a great doctor and 2. The AFO brace is worthless

> > b/c it doesn't hold the correction. So, Thursday 11/10 we saw

> Didelot

> > and that's when he ordered the AFO. We couldn't get the AFO until

> > Monday 11/14. He didn't wear the DBB during this time b/c Didelot

> > said not to put him through it. Flash forward to today. Tuesday

> night

> > we noticed regression and it has continued since then. His feet

> are

> > almost half way back to the day he was born. I called Didelot's

> > office yesterday and his nurse calls me today to tell me that he

> > doesn't want to see Austin until his next schuduled appt.(5 more

> wks)

> > and to continue with the AFO. Also that if he needs surgery, he

> won't

> > do it until Austin is 10 months of age. Um, wtf? I'm confused

> here.

> > Let's let this little 4 month old regress even more over 5 more

> > weeks?!

> > Here's where I need advice.

> > I need to call my insurance to see what kinda coverage we have as

> far

> > as out of state. I would like to go to Cincinnati if coverage

> allows,

> > but if not, Shriners in St. Louis(I think that's where it is.) Is

> one

> > place better than the other? What do you suggest. I hate to say

> it,

> > but I think Dr. Didelot just lost a patient.

> >

> > Thank You!

> > Tia

> > Mom to & Austin

> >

>

November 19, 2005

This post is perfect and correct. Get another opinion! His dr. is not doing

something right, even if it's just ignoring his patient! Good luck!

Marcia

Re: I Need Advice - kinda long sorry

Sorry about your POOR doctor. Makes no sense at all to make you wait 5 weeks

for a checkup when you can clearly see that he is already losing correction. I

am not a " veteran " of the Ponseti method but it seems like that 9 castings is

too many for the Ponseti method. I think the maximum is like 5 or 6.

I think you will be doing the correct thing by going to Shriners or wherever

to find a Ponseti certified doctor that doesn't deviate from the protocol. Good

Luck.

Reid - Austin 23/7 DBB (8-1-05)

Tia on wrote:

Here's some background.