Re: New here--feet slipping out

[Guest guest]

Has anyone had a similar experience?

Hi and welcome to our group! Simular experience? YES! With a stupid doctor

that did NOT know how to fix clubfeet! Have you looked around for other doctors

and options? I know you are worried and over whelmed but please do not let

that prevent you from finding the right care now while your son has the chance

to enjoy a full correction/recovery.

Tell us, how can we help you? Where are you, maybe we can point you towards a

doctor who knows how to fix clubfeet minus pain and misery and bad end results

including surgeries. Sorry this is short, I'm tired tonight but please send up

more details so we can help you avoid a major horrible problem with your son's

feet, OK? I've gone both roads with my two club footed sons, let me help you

avoid the bad road!!!!! You're at the right place!

ee, mother of two bcf boys:

- NON Ponseti Method Club Foot Disaster

Everett - Dr. Ponseti Success Story

----- Original Message -----

From: Tami Ogden

We had a boy last month born with bilateral club feet. We weren't expecting it

and it was quite a surprise. It has been overwhelming. We are on our 3rd set

of casts.

We had trouble with the first casts. Our baby was totally inconsolable for two

days straight, so we called our physical therapist and she told us to remove

them. When we did he had these horrendous looking pressure ulcers on the top of

both feet. It was awful. The past two sets of casts he has had have been fine.

They are putting a lot of extra padding around his feet to prevent the casts

from rubbing. They have also been wrapping them looser. But one cast came off

last week and looks like it is trying to work its way off again. I'm leary

about asking them to wrap it tighter after the pressure ulcers. Has anyone had

a similar experience?

[Guest guest]

Thank you for your reply. We are in south Missouri (West Plains). Our doctor

is in Springfield, MO. He specializes in the Ponseti method, but therapists

actually apply the casts.

I just took off the second slipping cast and there is another pressure ulcer.

It is very upsetting to see them on your baby.

Tami

son, Jathan 3/25/05

number23 number23@...> wrote:

Has anyone had a similar experience?

Hi and welcome to our group! Simular experience? YES! With a stupid doctor

that did NOT know how to fix clubfeet! Have you looked around for other doctors

and options? I know you are worried and over whelmed but please do not let

that prevent you from finding the right care now while your son has the chance

to enjoy a full correction/recovery.

Tell us, how can we help you? Where are you, maybe we can point you towards a

doctor who knows how to fix clubfeet minus pain and misery and bad end results

including surgeries. Sorry this is short, I'm tired tonight but please send up

more details so we can help you avoid a major horrible problem with your son's

feet, OK? I've gone both roads with my two club footed sons, let me help you

avoid the bad road!!!!! You're at the right place!

ee, mother of two bcf boys:

- NON Ponseti Method Club Foot Disaster

Everett - Dr. Ponseti Success Story

----- Original Message -----

From: Tami Ogden

We had a boy last month born with bilateral club feet. We weren't expecting it

and it was quite a surprise. It has been overwhelming. We are on our 3rd set

of casts.

We had trouble with the first casts. Our baby was totally inconsolable for two

days straight, so we called our physical therapist and she told us to remove

them. When we did he had these horrendous looking pressure ulcers on the top of

both feet. It was awful. The past two sets of casts he has had have been fine.

They are putting a lot of extra padding around his feet to prevent the casts

from rubbing. They have also been wrapping them looser. But one cast came off

last week and looks like it is trying to work its way off again. I'm leary

about asking them to wrap it tighter after the pressure ulcers. Has anyone had

a similar experience?

[Guest guest]

Tami,

I know it would be quite a hike, but there is a very successful and very

experienced Ponseti doctor practicing in St Louis. Dr Dobbs practices at both

the Children's Hopital and the Shriner's hospital. If you are seen at

Shriner's, all care is provided free of charge(this includes braces, shoes,

everything). They will also help with transportation. Here is some contact

information:

Dobbs, M.D.

St. Louis Children's Hospital

Suite 4s20

One Children's Place

St. Louis, MO 63110

Tel:

Dobbs, M.D.

Shriners Hospitals for Children

St. Louis Unit

2001 S. Lindbergh Blvd.

St. Louis, MO 63131-3597

Tel:

Fax:

There are a few things that sound fishy regarding your son's treatment. I would

recommend seeking out a second opinion--if only for peace of mind--and there is

no one better in your area than Dr Dobbs.

My husband grew up in MO (Cabool, Licking) and all of his family still live in

various parts of the state.

Welcome to the group. We're wishing you all the best!

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7)

Tami Ogden tami_ogden@...> wrote:

The doc we are using is Dr. Goodman. He seems to be very knowledgeable about

Ponseti, but a physical therapist is applying the casts. The casts are groin

high and they are bending the knees just maybe not enough. We haven't been told

anything about the clubfoot being atypical. The feet do appear to be getting

straighter and more pliable.

Tami

son, Jathan 3/25/05

__________________________________________________

[Guest guest]

Thanks Naomi!

Naomi powellbugs@...> wrote:Tami,

I know it would be quite a hike, but there is a very successful and very

experienced Ponseti doctor practicing in St Louis. Dr Dobbs practices at both

the Children's Hopital and the Shriner's hospital. If you are seen at

Shriner's, all care is provided free of charge(this includes braces, shoes,

everything). They will also help with transportation. Here is some contact

information:

Dobbs, M.D.

St. Louis Children's Hospital

Suite 4s20

One Children's Place

St. Louis, MO 63110

Tel:

Dobbs, M.D.

Shriners Hospitals for Children

St. Louis Unit

2001 S. Lindbergh Blvd.

St. Louis, MO 63131-3597

Tel:

Fax:

There are a few things that sound fishy regarding your son's treatment. I would

recommend seeking out a second opinion--if only for peace of mind--and there is

no one better in your area than Dr Dobbs.

My husband grew up in MO (Cabool, Licking) and all of his family still live in

various parts of the state.

Welcome to the group. We're wishing you all the best!

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7)

Tami Ogden tami_ogden@...> wrote:

The doc we are using is Dr. Goodman. He seems to be very knowledgeable about

Ponseti, but a physical therapist is applying the casts. The casts are groin

high and they are bending the knees just maybe not enough. We haven't been told

anything about the clubfoot being atypical. The feet do appear to be getting

straighter and more pliable.

Tami

son, Jathan 3/25/05

__________________________________________________

[Guest guest]

The doctor that I see uses the Ponsetti method and she is who applies the

casts. I would be sceptical that the doctor is not the one doing the

casting. They are the ones that are trained to do it, not the therapists.

[Guest guest]

Our experience was very different. There were cast techs that did all

of the casting, but they also trained specifically for casting clubfoot

using Ponseti. You could ask the tech next time what their training is.

> The doctor that I see uses the Ponsetti method and she is who applies

the

> casts. I would be sceptical that the doctor is not the one doing the

> casting. They are the ones that are trained to do it, not the

therapists.

[Guest guest]

Tami,

My son is a patient of Dr. Dobbs here in St. Louis and we couldn't be

happier with his treatment. I urge you to get a second opinion, you

can contact Dr. Dobbs directly by email: mattdobbs@...

If the Doctor is not the one holding the foot while the cast is being

applied I would be very leery of this practice. The main crux of the

Ponseti method is the precise manipulation of the bones of the foot

and the order in which it is done. I would not trust this part to the

casting technician.

Welcome to the group! Please keep in touch and let us know how

Jathan's treatment progresses.

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs Brace 16-18/7)

>

> The doc we are using is Dr. Goodman. He seems to be very

knowledgeable about Ponseti, but a physical therapist is applying the

casts. The casts are groin high and they are bending the knees just

maybe not enough. We haven't been told anything about the clubfoot

being atypical. The feet do appear to be getting straighter and more

pliable.

>

> Tami

>

> son, Jathan 3/25/05

>

>

> __________________________________________________

>

[Guest guest]

Tami,

I told my husband that there was a new group member from West Plains, MO and it

turns out that he was born at the " tiny hospital " there. We live in California

now, but we do try to make it back to MO as often as we can. Last year we got

to spend some time on the land (where some of the family still live--no indoor

plumbing) where grew up. In any case, that you are there makes us feel a

kinship with your family. We're rooting for you!

Please do let us know if there are other things we can do to help you process

all of this. We can't make the medical decisions for you and your son, of

course, but many of us have been in situations similar to yours. In our case,

we switched to a Ponseti doctor after 4 months of casting with a local doctor.

This switch required us to travel 300 miles each way, every week for 5 weeks,

for cast changes. It was crazy and hectic and stressful. I don't regret it at

all.

Feet slipping while in or slipping out of casts are often (though not always) a

sign that things aren't quite right. The atypical feet have a tendency to slip

around and work free of the casts, but more often it seems to be a result of

poor casting technique. Ponseti casts need to be applied in a very particular

way. I'm not saying that this is beyond the capacities of a cast tech--or of

anyone else, really--but it does require some specific training.

In addition, if the feet are slipping out of place while they are in the casts,

the effectiveness of the casts is compromised. They can wind up doing more harm

than good and cause pressure sores (as you have already seen first hand).

So, well, please keep us updated. And I'm curious about the origin and meaning

of your son's name.

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7)

__________________________________________________

[Guest guest]

Do not pass go, do not collect $200.....go straight to St. Louis!

Dr. Dobbs is there is looks like that would be about 200 miles for

you. We drive there from KY. He is worth every mile. He has a

regular office there and he also sees kids at Shriner's there. Give

it a try....it will be soooo worth it. is almost 4 and I

wouldn't have changed a thing about it not even if I could have seen

Dr. Ponseti except for I would love to meet him.

Pam and (8-12-01)

> Has anyone had a similar experience?

> Hi and welcome to our group! Simular experience? YES! With a

stupid doctor that did NOT know how to fix clubfeet! Have you looked

around for other doctors and options? I know you are worried and

over whelmed but please do not let that prevent you from finding the

right care now while your son has the chance to enjoy a full

correction/recovery.

>

> Tell us, how can we help you? Where are you, maybe we can point

you towards a doctor who knows how to fix clubfeet minus pain and

misery and bad end results including surgeries. Sorry this is short,

I'm tired tonight but please send up more details so we can help you

avoid a major horrible problem with your son's feet, OK? I've gone

both roads with my two club footed sons, let me help you avoid the

bad road!!!!! You're at the right place!

>

> ee, mother of two bcf boys:

> - NON Ponseti Method Club Foot Disaster

> Everett - Dr. Ponseti Success Story

>

> ----- Original Message -----

> From: Tami Ogden

> We had a boy last month born with bilateral club feet. We weren't

expecting it and it was quite a surprise. It has been

overwhelming. We are on our 3rd set of casts.

> We had trouble with the first casts. Our baby was totally

inconsolable for two days straight, so we called our physical

therapist and she told us to remove them. When we did he had these

horrendous looking pressure ulcers on the top of both feet. It was

awful. The past two sets of casts he has had have been fine. They

are putting a lot of extra padding around his feet to prevent the

casts from rubbing. They have also been wrapping them looser. But

one cast came off last week and looks like it is trying to work its

way off again. I'm leary about asking them to wrap it tighter after

the pressure ulcers. Has anyone had a similar experience?

>

>

>

>

>

>

>

[Guest guest]

Naomi,

It's nice to hear from a native . Thank you for all of your support. My

husband's name is and we were looking at baby names and stumbled across

the name Jathan, which is a combination of and . Well was a

name we were thinking of using too, so we decided to go with Jathan and use both

names.

I really think the casting technique is the problem. Jathan's feet corrected

really well in the first casting, so the techs feel like they overcorrected

causing sores in the first casts. With the last two castings (which are the

ones that slipped off) the techs were paranoid of making the casts too tight and

correcting a lot. They added A LOT of extra padding and did not wrap them as

tight. That may be why the one is slipping off. He is to be recasted today. I

plan to consult the dr in St. Louis. We already drive 2 hours to Springfield,

St. Louis is probably another 1 and a half or so, not that much difference.

What are the characteristics of atypical feet?

Again, thank you for all of your support. It really helps.

Tami

Naomi powellbugs@...> wrote:

Tami,

I told my husband that there was a new group member from West Plains, MO and it

turns out that he was born at the " tiny hospital " there. We live in California

now, but we do try to make it back to MO as often as we can. Last year we got

to spend some time on the land (where some of the family still live--no indoor

plumbing) where grew up. In any case, that you are there makes us feel a

kinship with your family. We're rooting for you!

Please do let us know if there are other things we can do to help you process

all of this. We can't make the medical decisions for you and your son, of

course, but many of us have been in situations similar to yours. In our case,

we switched to a Ponseti doctor after 4 months of casting with a local doctor.

This switch required us to travel 300 miles each way, every week for 5 weeks,

for cast changes. It was crazy and hectic and stressful. I don't regret it at

all.

Feet slipping while in or slipping out of casts are often (though not always) a

sign that things aren't quite right. The atypical feet have a tendency to slip

around and work free of the casts, but more often it seems to be a result of

poor casting technique. Ponseti casts need to be applied in a very particular

way. I'm not saying that this is beyond the capacities of a cast tech--or of

anyone else, really--but it does require some specific training.

In addition, if the feet are slipping out of place while they are in the casts,

the effectiveness of the casts is compromised. They can wind up doing more harm

than good and cause pressure sores (as you have already seen first hand).

So, well, please keep us updated. And I'm curious about the origin and meaning

of your son's name.

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7)

__________________________________________________

[Guest guest]

Tami,

Just wanted to throw in my two cents. We see Dr. Dobbs in St. Louis

and I can't tell you how great he is, it is definitely worth the extra

drive to get here to see him. Do you mind if I ask you what your

maiden name is? For some reason your name sounds really familiar and

I know several Tami's in western Missouri and eastern Kansas.

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 16-18/7)

> Tami,

>

> I told my husband that there was a new group member from West

Plains, MO and it turns out that he was born at the " tiny hospital "

there. We live in California now, but we do try to make it back to MO

as often as we can. Last year we got to spend some time on the land

(where some of the family still live--no indoor plumbing) where

grew up. In any case, that you are there makes us feel a kinship with

your family. We're rooting for you!

>

> Please do let us know if there are other things we can do to help

you process all of this. We can't make the medical decisions for you

and your son, of course, but many of us have been in situations

similar to yours. In our case, we switched to a Ponseti doctor after

4 months of casting with a local doctor. This switch required us to

travel 300 miles each way, every week for 5 weeks, for cast changes.

It was crazy and hectic and stressful. I don't regret it at all.

>

> Feet slipping while in or slipping out of casts are often (though

not always) a sign that things aren't quite right. The atypical feet

have a tendency to slip around and work free of the casts, but more

often it seems to be a result of poor casting technique. Ponseti

casts need to be applied in a very particular way. I'm not saying

that this is beyond the capacities of a cast tech--or of anyone else,

really--but it does require some specific training.

> In addition, if the feet are slipping out of place while they are in

the casts, the effectiveness of the casts is compromised. They can

wind up doing more harm than good and cause pressure sores (as you

have already seen first hand).

>

> So, well, please keep us updated. And I'm curious about the origin

and meaning of your son's name.

>

> Naomi

> The Family

> Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB

14/7)

>

>

>

>

> __________________________________________________

>

[Guest guest]

I would just like to echo what has said. My daughter is being treated

by Dr. Dobbs as well, and we switched after going to another doctor. Before Dr.

Dobbs put a corrective cast on her foot, the bottom of her foot was rounded.

Especially her heel. After one cast that Dr. Dobbs did, I saw a remarkable

difference in the her foot. It does make a difference to have someone that

knows waht they are doing.

Amy

Gwyneth 12/05/03 rt club foot Dobbs brace

Re: New here--feet slipping out

Tami,

My son is a patient of Dr. Dobbs here in St. Louis and we couldn't be

happier with his treatment. I urge you to get a second opinion, you

can contact Dr. Dobbs directly by email: mattdobbs@...

If the Doctor is not the one holding the foot while the cast is being

applied I would be very leery of this practice. The main crux of the

Ponseti method is the precise manipulation of the bones of the foot

and the order in which it is done. I would not trust this part to the

casting technician.

Welcome to the group! Please keep in touch and let us know how

Jathan's treatment progresses.

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs Brace 16-18/7)

>

> The doc we are using is Dr. Goodman. He seems to be very

knowledgeable about Ponseti, but a physical therapist is applying the

casts. The casts are groin high and they are bending the knees just

maybe not enough. We haven't been told anything about the clubfoot

being atypical. The feet do appear to be getting straighter and more

pliable.

>

> Tami

>

> son, Jathan 3/25/05

>

>

> __________________________________________________

>