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Posted

Thanks so much for the link. I am awful at navigating through websites to find

specific information!! Dr. Dobbs' brace was based on the Ponseti/

brace, but doesn't have the " window " to see the heel. My husband and I said

that would be one thing to change about Dr. Dobbs' brace. Dr. Dobbs' nurse,

, mentioned that the Ponseti/ brace may be our back-up plan if

Dr. Dobbs' brace doesn't work again once Evan grows a bit. I am just afraid of

more blisters/sores. They look so bad, even though they don't seem to hurt now

that the brace is off.

Jennie

nokitty00 wrote:

I hope some of the more experienced parents will chime in here, but

from what I have read I think the Ponseti/ brace is more

effective for atypical cf. According to the global help booklet:

" The standard shoes do not hold the atypical

short and chubby foot that often slips out causing blisters and

skin breakdown over the heel. This leads to poor compliance

and rapid recurrence of the deformity.

The pre-molded foot-ankle brace [D] developed to improve

compliance with bracing is extremely effective in the post cast

treatment of the atypical cases. It consists of sandals with three

straps of soft leather that hold the foot firmly on a soft, well

molded plastic sole. The sandals are attached to the bar by an

adjustable plastic device. Two openings at the heel allow the

parents to see that the hindfoot is in place. This brace provides

comfort to the child and relief to the parents, and has prevented

relapses. "

I cannot find the link but you can go wo www.global-help.org - look

for publications, clubfoot Ponseti management.

Hi everyone,

> My son Luke is 5 months old. He has bilateral club foot. He

started

> casting after the second day of birth. When Luke was born it was

two

> days before Thanksgiving. Therefore we had to wait a couple days

> before an orthapedic could come and tell us what was wrong with

Lukes

> feet. The hospital kept me for three nights. Finaly an Orthapedic

doc

> came, Told us Luke has a 95% chance he will not need surgery. That

> made us happy. The doc says it can be fixed. he explained that

> castings needed to be done. We had no Idea about clubfoot, I can

say

> the doctor made us feel so much better telling us the things he

said,

> it relaxed us to much. Anyways; We were doing castings every week.

> The doctor told us his feet are doing wonderfull. We are more than

> 50% there! That made us feel good. Then the last cast will stay on

> for 3 Weeks. Well, when we went in to take off the 3 week cast

this

> is when things were not going so good anymore. The doc said his

feet

> are not getting better and he will need surgery. We were so

> disapointed. We believed for so many weeks our son was doing

great.

> They put more casts on him for two weeks while we waited for his

> braces. The doc also says he wants to do surgey when he is 9

months

> old. We got the braces, we hate the braces! We cant keep them on

his

> feet the right way. Anyways this is about the time I start to

> investigate clubfoot. We decide to go get a second opinion 3 hours

> away from us. This doc says posterior release as soon as possible.

We

> set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> info on how to talk with doc Ponseti. I sent him an e mail of

Lukes

> feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> come see him in Iowa. My husband and us are going. After all the

good

> things I hear about his work, I would be crazy not to. We leave

> thursday. Northern California to Iowa we go. Our appointment is on

> May 8th. I will post U all soon. Thanks for all the good info. And

> good luck to us all. Luke's Mommy. Dana

>

>

>

>

>

>

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Posted
Posted

Dr. Dobbs brace is NOT based on the Ponseti FAB. They are

two completely different braces! Major differences, Dobbs uses an

articulating bar, the PM has a straight fixed bar (adjustable in

length) which has never really been problematic for these

kids. Dobbs also seems to be exclusively using an AFO (plastic

molded brace - not a shoe) for every foot, whereas the PM FAB uses a

leather " sandal " type " shoe " that is very soft and flexible at the

ankle. These come in very tiny sizes and were developed specifically

for itty bitty feet that don't work well with the Markell shoes

(white, open toe boot) and especially for atypical feet.

I'm feeling a bit grrrr about this... I feel that you should have

been offered the PM from the get go or as soon as it was clear that

the AFO wasn't going to work. I would suggest that you call them

immediately and demand that you be fitted for the PM's and do not

look back. These shoes will work for your child.

While some feet are ok at first with these AFO's, I for one am very

disappointed to be hearing over and over about the push to MAKE the

Dobbs AFO work when it clearly isn't and leaving parents without

bracing, or with feet that don't stay in them or feet that have

sores... to WAIT or whatever for some miracle that the AFO will

work. That is really so very NOT COOL IMO.

AFO's in general... are not indicated for Ponseti corrected feet. I

know that the jury is still out on whether these AFO's are

appropriate for these feet long term, if at all. They area a static

brace, and do not allow any movement of the ankle for one... I feel

strongly that our clubfeet children need the exercise and flexibility

that a SHOE allows for at the ankle. Static braces, are known to

cause muscle atrophy and that is one thing you do not want with a clubfoot.

Well, I suppose I could go on and on about why you should not be

being pressured to use this brace but I don't think I need to. You

know that your son needs the best brace for his feet and it sounds

like you aren't interested in him being a guinea pig for this

experimental brace that has already shown to you that it won't

work. I am very respectful for Dr. Dobbs and the work he does for CF

children. He IS a fantastic doctor! But I'm seeing a bit of tunnel

vision here in regards to the push to only use this brace for every

foot he corrects when he knows full well that there is a perfectly

fine, and perfectly designed shoe out there. The bar... I am ok

with. Articulating seems to be an ok thing even if I do feel it's

mostly a convenience over the fixed bar. AFO's however... I don't

like and would never want my child in for very long at all for the

reasons I specified above. I do not feel that it is a viable option

or even an option worth pursuing now that we have the PM's. PM's on

the articulating bar would be great, but so far we haven't seen a lot

of work towards integrating these on the articulating bar even though

it's been suggested many times. I do know they're looking into it,

but that's been the status of this idea for over a year if not longer

and who knows when it'll actually happen.

I hope you will be able to let Dobbs know that you will settle for

nothing less than the PM's so your son can be braced as he

deserves. Remember, YOU are the mama. YOU are also the

customer. YOU are in control of what brace your child uses and your

son, especially if he has complex or " atypical " clubfoot should

absolutely have the brace designed for these special feet.

Kori

At 09:35 AM 5/2/2006, you wrote:

>Thanks so much for the link. I am awful at navigating through

>websites to find specific information!! Dr. Dobbs' brace was based

>on the Ponseti/ brace, but doesn't have the " window " to see

>the heel. My husband and I said that would be one thing to change

>about Dr. Dobbs' brace. Dr. Dobbs' nurse, , mentioned that

>the Ponseti/ brace may be our back-up plan if Dr. Dobbs'

>brace doesn't work again once Evan grows a bit. I am just afraid of

>more blisters/sores. They look so bad, even though they don't seem

>to hurt now that the brace is off.

>

> Jennie

>

>nokitty00 wrote:

> I hope some of the more experienced parents will chime in here, but

>from what I have read I think the Ponseti/ brace is more

>effective for atypical cf. According to the global help booklet:

>

> " The standard shoes do not hold the atypical

>short and chubby foot that often slips out causing blisters and

>skin breakdown over the heel. This leads to poor compliance

>and rapid recurrence of the deformity.

>The pre-molded foot-ankle brace [D] developed to improve

>compliance with bracing is extremely effective in the post cast

>treatment of the atypical cases. It consists of sandals with three

>straps of soft leather that hold the foot firmly on a soft, well

>molded plastic sole. The sandals are attached to the bar by an

>adjustable plastic device. Two openings at the heel allow the

>parents to see that the hindfoot is in place. This brace provides

>comfort to the child and relief to the parents, and has prevented

>relapses. "

>

>I cannot find the link but you can go wo www.global-help.org - look

>for publications, clubfoot Ponseti management.

> Hi everyone,

> > My son Luke is 5 months old. He has bilateral club foot. He

>started

> > casting after the second day of birth. When Luke was born it was

>two

> > days before Thanksgiving. Therefore we had to wait a couple days

> > before an orthapedic could come and tell us what was wrong with

>Lukes

> > feet. The hospital kept me for three nights. Finaly an Orthapedic

>doc

> > came, Told us Luke has a 95% chance he will not need surgery. That

> > made us happy. The doc says it can be fixed. he explained that

> > castings needed to be done. We had no Idea about clubfoot, I can

>say

> > the doctor made us feel so much better telling us the things he

>said,

> > it relaxed us to much. Anyways; We were doing castings every week.

> > The doctor told us his feet are doing wonderfull. We are more than

> > 50% there! That made us feel good. Then the last cast will stay on

> > for 3 Weeks. Well, when we went in to take off the 3 week cast

>this

> > is when things were not going so good anymore. The doc said his

>feet

> > are not getting better and he will need surgery. We were so

> > disapointed. We believed for so many weeks our son was doing

>great.

> > They put more casts on him for two weeks while we waited for his

> > braces. The doc also says he wants to do surgey when he is 9

>months

> > old. We got the braces, we hate the braces! We cant keep them on

>his

> > feet the right way. Anyways this is about the time I start to

> > investigate clubfoot. We decide to go get a second opinion 3 hours

> > away from us. This doc says posterior release as soon as possible.

>We

> > set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> > info on how to talk with doc Ponseti. I sent him an e mail of

>Lukes

> > feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> > come see him in Iowa. My husband and us are going. After all the

>good

> > things I hear about his work, I would be crazy not to. We leave

> > thursday. Northern California to Iowa we go. Our appointment is on

> > May 8th. I will post U all soon. Thanks for all the good info. And

> > good luck to us all. Luke's Mommy. Dana

> >

> >

> >

> >

> >

> >

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Posted
Posted

I probably need to clarify some things. I was mistaken about Dr. Dobbs brace

being based on the Ponseti FAB. And, it's important I clarify that we

don't feel pressured to use Dr. Dobbs' brace. He has not in any way pushed this

brace onto us. His nurse has encouraged us to educate ourselves on other

braces, which is what I'm doing now. Unfortunately, we were lax in doing this

for a number of reasons that aren't really important now. My understanding is

that he is not exclusively using his brace. His nurse said that they will be

more than willing to discuss options with us at our next appointment and, if we

so choose, he will help facilitate obtaining whatever brace we decide upon.

Evan had only been in the brace for 3 days when the redness and minor sores

appeared. I called and got in to see Dr. Dobbs and his staff right away. The

sores got better then worse over the weekend and first thing Monday I called.

Dr. Dobbs and his nurse said to take the brace

off and they would re-cast to hold the correction until the skin healed and he

grew a bit. Between now and then he is being stretched 6 +/- times a day and I

am trying to get as much information as I can about what's all out there so we

can talk more about options at our next appointment. Thanks so much for the

additional information about the Ponseti brace.

Jennie

frogabog wrote:

Dr. Dobbs brace is NOT based on the Ponseti FAB. They are

two completely different braces! Major differences, Dobbs uses an

articulating bar, the PM has a straight fixed bar (adjustable in

length) which has never really been problematic for these

kids. Dobbs also seems to be exclusively using an AFO (plastic

molded brace - not a shoe) for every foot, whereas the PM FAB uses a

leather " sandal " type " shoe " that is very soft and flexible at the

ankle. These come in very tiny sizes and were developed specifically

for itty bitty feet that don't work well with the Markell shoes

(white, open toe boot) and especially for atypical feet.

I'm feeling a bit grrrr about this... I feel that you should have

been offered the PM from the get go or as soon as it was clear that

the AFO wasn't going to work. I would suggest that you call them

immediately and demand that you be fitted for the PM's and do not

look back. These shoes will work for your child.

While some feet are ok at first with these AFO's, I for one am very

disappointed to be hearing over and over about the push to MAKE the

Dobbs AFO work when it clearly isn't and leaving parents without

bracing, or with feet that don't stay in them or feet that have

sores... to WAIT or whatever for some miracle that the AFO will

work. That is really so very NOT COOL IMO.

AFO's in general... are not indicated for Ponseti corrected feet. I

know that the jury is still out on whether these AFO's are

appropriate for these feet long term, if at all. They area a static

brace, and do not allow any movement of the ankle for one... I feel

strongly that our clubfeet children need the exercise and flexibility

that a SHOE allows for at the ankle. Static braces, are known to

cause muscle atrophy and that is one thing you do not want with a clubfoot.

Well, I suppose I could go on and on about why you should not be

being pressured to use this brace but I don't think I need to. You

know that your son needs the best brace for his feet and it sounds

like you aren't interested in him being a guinea pig for this

experimental brace that has already shown to you that it won't

work. I am very respectful for Dr. Dobbs and the work he does for CF

children. He IS a fantastic doctor! But I'm seeing a bit of tunnel

vision here in regards to the push to only use this brace for every

foot he corrects when he knows full well that there is a perfectly

fine, and perfectly designed shoe out there. The bar... I am ok

with. Articulating seems to be an ok thing even if I do feel it's

mostly a convenience over the fixed bar. AFO's however... I don't

like and would never want my child in for very long at all for the

reasons I specified above. I do not feel that it is a viable option

or even an option worth pursuing now that we have the PM's. PM's on

the articulating bar would be great, but so far we haven't seen a lot

of work towards integrating these on the articulating bar even though

it's been suggested many times. I do know they're looking into it,

but that's been the status of this idea for over a year if not longer

and who knows when it'll actually happen.

I hope you will be able to let Dobbs know that you will settle for

nothing less than the PM's so your son can be braced as he

deserves. Remember, YOU are the mama. YOU are also the

customer. YOU are in control of what brace your child uses and your

son, especially if he has complex or " atypical " clubfoot should

absolutely have the brace designed for these special feet.

Kori

At 09:35 AM 5/2/2006, you wrote:

>Thanks so much for the link. I am awful at navigating through

>websites to find specific information!! Dr. Dobbs' brace was based

>on the Ponseti/ brace, but doesn't have the " window " to see

>the heel. My husband and I said that would be one thing to change

>about Dr. Dobbs' brace. Dr. Dobbs' nurse, , mentioned that

>the Ponseti/ brace may be our back-up plan if Dr. Dobbs'

>brace doesn't work again once Evan grows a bit. I am just afraid of

>more blisters/sores. They look so bad, even though they don't seem

>to hurt now that the brace is off.

>

> Jennie

>

>nokitty00 wrote:

> I hope some of the more experienced parents will chime in here, but

>from what I have read I think the Ponseti/ brace is more

>effective for atypical cf. According to the global help booklet:

>

> " The standard shoes do not hold the atypical

>short and chubby foot that often slips out causing blisters and

>skin breakdown over the heel. This leads to poor compliance

>and rapid recurrence of the deformity.

>The pre-molded foot-ankle brace [D] developed to improve

>compliance with bracing is extremely effective in the post cast

>treatment of the atypical cases. It consists of sandals with three

>straps of soft leather that hold the foot firmly on a soft, well

>molded plastic sole. The sandals are attached to the bar by an

>adjustable plastic device. Two openings at the heel allow the

>parents to see that the hindfoot is in place. This brace provides

>comfort to the child and relief to the parents, and has prevented

>relapses. "

>

>I cannot find the link but you can go wo www.global-help.org - look

>for publications, clubfoot Ponseti management.

> Hi everyone,

> > My son Luke is 5 months old. He has bilateral club foot. He

>started

> > casting after the second day of birth. When Luke was born it was

>two

> > days before Thanksgiving. Therefore we had to wait a couple days

> > before an orthapedic could come and tell us what was wrong with

>Lukes

> > feet. The hospital kept me for three nights. Finaly an Orthapedic

>doc

> > came, Told us Luke has a 95% chance he will not need surgery. That

> > made us happy. The doc says it can be fixed. he explained that

> > castings needed to be done. We had no Idea about clubfoot, I can

>say

> > the doctor made us feel so much better telling us the things he

>said,

> > it relaxed us to much. Anyways; We were doing castings every week.

> > The doctor told us his feet are doing wonderfull. We are more than

> > 50% there! That made us feel good. Then the last cast will stay on

> > for 3 Weeks. Well, when we went in to take off the 3 week cast

>this

> > is when things were not going so good anymore. The doc said his

>feet

> > are not getting better and he will need surgery. We were so

> > disapointed. We believed for so many weeks our son was doing

>great.

> > They put more casts on him for two weeks while we waited for his

> > braces. The doc also says he wants to do surgey when he is 9

>months

> > old. We got the braces, we hate the braces! We cant keep them on

>his

> > feet the right way. Anyways this is about the time I start to

> > investigate clubfoot. We decide to go get a second opinion 3 hours

> > away from us. This doc says posterior release as soon as possible.

>We

> > set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> > info on how to talk with doc Ponseti. I sent him an e mail of

>Lukes

> > feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> > come see him in Iowa. My husband and us are going. After all the

>good

> > things I hear about his work, I would be crazy not to. We leave

> > thursday. Northern California to Iowa we go. Our appointment is on

> > May 8th. I will post U all soon. Thanks for all the good info. And

> > good luck to us all. Luke's Mommy. Dana

> >

> >

> >

> >

> >

> >

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Posted
Posted

I just want to chime in about Dobbs brace too-my son Mason(5-23-05) has

been in it since he was five months old. Although he did endure a

blister on his heel, and a sore in between his two baby toes when he

first started out wearing it(we left if off for a longer time in between

so it could heal, and cut small holes in the back of the plastic booties

to get air inside of it so he wouldn't sweat so much), he is doing great

with it now. And Dobbs has changed our bar(and I assume other people's

as well) to a non-articulating straight bar now.

But best of luck to everyone, no matter what method/brace they're using.

Niki & Mason(5-23-05, rcf Dobbs 16/7)

Re: Jennie - about atypical

Thanks so much for the link. I am awful at navigating through websites

to find specific information!! Dr. Dobbs' brace was based on the

Ponseti/ brace, but doesn't have the " window " to see the heel.

My husband and I said that would be one thing to change about Dr. Dobbs'

brace. Dr. Dobbs' nurse, , mentioned that the Ponseti/

brace may be our back-up plan if Dr. Dobbs' brace doesn't work again

once Evan grows a bit. I am just afraid of more blisters/sores. They

look so bad, even though they don't seem to hurt now that the brace is

off.

Jennie

nokitty00 wrote:

I hope some of the more experienced parents will chime in here, but

from what I have read I think the Ponseti/ brace is more

effective for atypical cf. According to the global help booklet:

" The standard shoes do not hold the atypical

short and chubby foot that often slips out causing blisters and

skin breakdown over the heel. This leads to poor compliance

and rapid recurrence of the deformity.

The pre-molded foot-ankle brace [D] developed to improve

compliance with bracing is extremely effective in the post cast

treatment of the atypical cases. It consists of sandals with three

straps of soft leather that hold the foot firmly on a soft, well

molded plastic sole. The sandals are attached to the bar by an

adjustable plastic device. Two openings at the heel allow the

parents to see that the hindfoot is in place. This brace provides

comfort to the child and relief to the parents, and has prevented

relapses. "

I cannot find the link but you can go wo www.global-help.org - look

for publications, clubfoot Ponseti management.

Hi everyone,

> My son Luke is 5 months old. He has bilateral club foot. He

started

> casting after the second day of birth. When Luke was born it was

two

> days before Thanksgiving. Therefore we had to wait a couple days

> before an orthapedic could come and tell us what was wrong with

Lukes

> feet. The hospital kept me for three nights. Finaly an Orthapedic

doc

> came, Told us Luke has a 95% chance he will not need surgery. That

> made us happy. The doc says it can be fixed. he explained that

> castings needed to be done. We had no Idea about clubfoot, I can

say

> the doctor made us feel so much better telling us the things he

said,

> it relaxed us to much. Anyways; We were doing castings every week.

> The doctor told us his feet are doing wonderfull. We are more than

> 50% there! That made us feel good. Then the last cast will stay on

> for 3 Weeks. Well, when we went in to take off the 3 week cast

this

> is when things were not going so good anymore. The doc said his

feet

> are not getting better and he will need surgery. We were so

> disapointed. We believed for so many weeks our son was doing

great.

> They put more casts on him for two weeks while we waited for his

> braces. The doc also says he wants to do surgey when he is 9

months

> old. We got the braces, we hate the braces! We cant keep them on

his

> feet the right way. Anyways this is about the time I start to

> investigate clubfoot. We decide to go get a second opinion 3 hours

> away from us. This doc says posterior release as soon as possible.

We

> set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> info on how to talk with doc Ponseti. I sent him an e mail of

Lukes

> feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> come see him in Iowa. My husband and us are going. After all the

good

> things I hear about his work, I would be crazy not to. We leave

> thursday. Northern California to Iowa we go. Our appointment is on

> May 8th. I will post U all soon. Thanks for all the good info. And

> good luck to us all. Luke's Mommy. Dana

>

>

>

>

>

>

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Posted
Posted

Hi all,

Just wanted to say that in light of some clarity on this, *pushed*

may be too harsh a word here. I just want everyone to know that

there is a great brace out there for our children that does not

involve an AFO. I don't think badly of Dr. Dobbs or his staff, I

know they're wonderful there and I respect them a great deal. I do

however love babies more and I do get a bit frustrated at times

thinking of how simple it is to get and use the PM's and wondering

why every doc isn't using them when they're seeing issues with other braces.

OK, 'nuf said. Thank you for listening!

Kori

At 10:36 AM 5/2/2006, you wrote:

>Dr. Dobbs brace is NOT based on the Ponseti FAB. They are

>two completely different braces! Major differences, Dobbs uses an

>articulating bar, the PM has a straight fixed bar (adjustable in

>length) which has never really been problematic for these

>kids. Dobbs also seems to be exclusively using an AFO (plastic

>molded brace - not a shoe) for every foot, whereas the PM FAB uses a

>leather " sandal " type " shoe " that is very soft and flexible at the

>ankle. These come in very tiny sizes and were developed specifically

>for itty bitty feet that don't work well with the Markell shoes

>(white, open toe boot) and especially for atypical feet.

>

>I'm feeling a bit grrrr about this... I feel that you should have

>been offered the PM from the get go or as soon as it was clear that

>the AFO wasn't going to work. I would suggest that you call them

>immediately and demand that you be fitted for the PM's and do not

>look back. These shoes will work for your child.

>

>While some feet are ok at first with these AFO's, I for one am very

>disappointed to be hearing over and over about the push to MAKE the

>Dobbs AFO work when it clearly isn't and leaving parents without

>bracing, or with feet that don't stay in them or feet that have

>sores... to WAIT or whatever for some miracle that the AFO will

>work. That is really so very NOT COOL IMO.

>

>AFO's in general... are not indicated for Ponseti corrected feet. I

>know that the jury is still out on whether these AFO's are

>appropriate for these feet long term, if at all. They area a static

>brace, and do not allow any movement of the ankle for one... I feel

>strongly that our clubfeet children need the exercise and flexibility

>that a SHOE allows for at the ankle. Static braces, are known to

>cause muscle atrophy and that is one thing you do not want with a clubfoot.

>

>Well, I suppose I could go on and on about why you should not be

>being pressured to use this brace but I don't think I need to. You

>know that your son needs the best brace for his feet and it sounds

>like you aren't interested in him being a guinea pig for this

>experimental brace that has already shown to you that it won't

>work. I am very respectful for Dr. Dobbs and the work he does for CF

>children. He IS a fantastic doctor! But I'm seeing a bit of tunnel

>vision here in regards to the push to only use this brace for every

>foot he corrects when he knows full well that there is a perfectly

>fine, and perfectly designed shoe out there. The bar... I am ok

>with. Articulating seems to be an ok thing even if I do feel it's

>mostly a convenience over the fixed bar. AFO's however... I don't

>like and would never want my child in for very long at all for the

>reasons I specified above. I do not feel that it is a viable option

>or even an option worth pursuing now that we have the PM's. PM's on

>the articulating bar would be great, but so far we haven't seen a lot

>of work towards integrating these on the articulating bar even though

>it's been suggested many times. I do know they're looking into it,

>but that's been the status of this idea for over a year if not longer

>and who knows when it'll actually happen.

>

>I hope you will be able to let Dobbs know that you will settle for

>nothing less than the PM's so your son can be braced as he

>deserves. Remember, YOU are the mama. YOU are also the

>customer. YOU are in control of what brace your child uses and your

>son, especially if he has complex or " atypical " clubfoot should

>absolutely have the brace designed for these special feet.

>

>Kori

>

>

>

>

>

>At 09:35 AM 5/2/2006, you wrote:

> >Thanks so much for the link. I am awful at navigating through

> >websites to find specific information!! Dr. Dobbs' brace was based

> >on the Ponseti/ brace, but doesn't have the " window " to see

> >the heel. My husband and I said that would be one thing to change

> >about Dr. Dobbs' brace. Dr. Dobbs' nurse, , mentioned that

> >the Ponseti/ brace may be our back-up plan if Dr. Dobbs'

> >brace doesn't work again once Evan grows a bit. I am just afraid of

> >more blisters/sores. They look so bad, even though they don't seem

> >to hurt now that the brace is off.

> >

> > Jennie

> >

> >nokitty00 wrote:

> > I hope some of the more experienced parents will chime in here, but

> >from what I have read I think the Ponseti/ brace is more

> >effective for atypical cf. According to the global help booklet:

> >

> > " The standard shoes do not hold the atypical

> >short and chubby foot that often slips out causing blisters and

> >skin breakdown over the heel. This leads to poor compliance

> >and rapid recurrence of the deformity.

> >The pre-molded foot-ankle brace [D] developed to improve

> >compliance with bracing is extremely effective in the post cast

> >treatment of the atypical cases. It consists of sandals with three

> >straps of soft leather that hold the foot firmly on a soft, well

> >molded plastic sole. The sandals are attached to the bar by an

> >adjustable plastic device. Two openings at the heel allow the

> >parents to see that the hindfoot is in place. This brace provides

> >comfort to the child and relief to the parents, and has prevented

> >relapses. "

> >

> >I cannot find the link but you can go wo www.global-help.org - look

> >for publications, clubfoot Ponseti management.

> > Hi everyone,

> > > My son Luke is 5 months old. He has bilateral club foot. He

> >started

> > > casting after the second day of birth. When Luke was born it was

> >two

> > > days before Thanksgiving. Therefore we had to wait a couple days

> > > before an orthapedic could come and tell us what was wrong with

> >Lukes

> > > feet. The hospital kept me for three nights. Finaly an Orthapedic

> >doc

> > > came, Told us Luke has a 95% chance he will not need surgery. That

> > > made us happy. The doc says it can be fixed. he explained that

> > > castings needed to be done. We had no Idea about clubfoot, I can

> >say

> > > the doctor made us feel so much better telling us the things he

> >said,

> > > it relaxed us to much. Anyways; We were doing castings every week.

> > > The doctor told us his feet are doing wonderfull. We are more than

> > > 50% there! That made us feel good. Then the last cast will stay on

> > > for 3 Weeks. Well, when we went in to take off the 3 week cast

> >this

> > > is when things were not going so good anymore. The doc said his

> >feet

> > > are not getting better and he will need surgery. We were so

> > > disapointed. We believed for so many weeks our son was doing

> >great.

> > > They put more casts on him for two weeks while we waited for his

> > > braces. The doc also says he wants to do surgey when he is 9

> >months

> > > old. We got the braces, we hate the braces! We cant keep them on

> >his

> > > feet the right way. Anyways this is about the time I start to

> > > investigate clubfoot. We decide to go get a second opinion 3 hours

> > > away from us. This doc says posterior release as soon as possible.

> >We

> > > set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> > > info on how to talk with doc Ponseti. I sent him an e mail of

> >Lukes

> > > feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> > > come see him in Iowa. My husband and us are going. After all the

> >good

> > > things I hear about his work, I would be crazy not to. We leave

> > > thursday. Northern California to Iowa we go. Our appointment is on

> > > May 8th. I will post U all soon. Thanks for all the good info. And

> > > good luck to us all. Luke's Mommy. Dana

> > >

> > >

> > >

> > >

> > >

> > >

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Posted
Posted

LOL Kori! My ortho here in Texas is using the PM's exclusively after setting up

the local orthotics place to get them. He told me at our last appointment that

he has put 8 more club foot babies into them since we last saw each other. He

loved the design and the comfort for the babies, as well as the ease for

parents. Do you think will give me a little kickback discount on my next

pair of shoes for all the business I've thrown his way? hehehe

Carol and

Re: Jennie - about atypical

Hi all,

Just wanted to say that in light of some clarity on this, *pushed*

may be too harsh a word here. I just want everyone to know that

there is a great brace out there for our children that does not

involve an AFO. I don't think badly of Dr. Dobbs or his staff, I

know they're wonderful there and I respect them a great deal. I do

however love babies more and I do get a bit frustrated at times

thinking of how simple it is to get and use the PM's and wondering

why every doc isn't using them when they're seeing issues with other braces.

OK, 'nuf said. Thank you for listening!

Kori

At 10:36 AM 5/2/2006, you wrote:

>Dr. Dobbs brace is NOT based on the Ponseti FAB. They are

>two completely different braces! Major differences, Dobbs uses an

>articulating bar, the PM has a straight fixed bar (adjustable in

>length) which has never really been problematic for these

>kids. Dobbs also seems to be exclusively using an AFO (plastic

>molded brace - not a shoe) for every foot, whereas the PM FAB uses a

>leather " sandal " type " shoe " that is very soft and flexible at the

>ankle. These come in very tiny sizes and were developed specifically

>for itty bitty feet that don't work well with the Markell shoes

>(white, open toe boot) and especially for atypical feet.

>

>I'm feeling a bit grrrr about this... I feel that you should have

>been offered the PM from the get go or as soon as it was clear that

>the AFO wasn't going to work. I would suggest that you call them

>immediately and demand that you be fitted for the PM's and do not

>look back. These shoes will work for your child.

>

>While some feet are ok at first with these AFO's, I for one am very

>disappointed to be hearing over and over about the push to MAKE the

>Dobbs AFO work when it clearly isn't and leaving parents without

>bracing, or with feet that don't stay in them or feet that have

>sores... to WAIT or whatever for some miracle that the AFO will

>work. That is really so very NOT COOL IMO.

>

>AFO's in general... are not indicated for Ponseti corrected feet. I

>know that the jury is still out on whether these AFO's are

>appropriate for these feet long term, if at all. They area a static

>brace, and do not allow any movement of the ankle for one... I feel

>strongly that our clubfeet children need the exercise and flexibility

>that a SHOE allows for at the ankle. Static braces, are known to

>cause muscle atrophy and that is one thing you do not want with a clubfoot.

>

>Well, I suppose I could go on and on about why you should not be

>being pressured to use this brace but I don't think I need to. You

>know that your son needs the best brace for his feet and it sounds

>like you aren't interested in him being a guinea pig for this

>experimental brace that has already shown to you that it won't

>work. I am very respectful for Dr. Dobbs and the work he does for CF

>children. He IS a fantastic doctor! But I'm seeing a bit of tunnel

>vision here in regards to the push to only use this brace for every

>foot he corrects when he knows full well that there is a perfectly

>fine, and perfectly designed shoe out there. The bar... I am ok

>with. Articulating seems to be an ok thing even if I do feel it's

>mostly a convenience over the fixed bar. AFO's however... I don't

>like and would never want my child in for very long at all for the

>reasons I specified above. I do not feel that it is a viable option

>or even an option worth pursuing now that we have the PM's. PM's on

>the articulating bar would be great, but so far we haven't seen a lot

>of work towards integrating these on the articulating bar even though

>it's been suggested many times. I do know they're looking into it,

>but that's been the status of this idea for over a year if not longer

>and who knows when it'll actually happen.

>

>I hope you will be able to let Dobbs know that you will settle for

>nothing less than the PM's so your son can be braced as he

>deserves. Remember, YOU are the mama. YOU are also the

>customer. YOU are in control of what brace your child uses and your

>son, especially if he has complex or " atypical " clubfoot should

>absolutely have the brace designed for these special feet.

>

>Kori

>

>

>

>

>

>At 09:35 AM 5/2/2006, you wrote:

> >Thanks so much for the link. I am awful at navigating through

> >websites to find specific information!! Dr. Dobbs' brace was based

> >on the Ponseti/ brace, but doesn't have the " window " to see

> >the heel. My husband and I said that would be one thing to change

> >about Dr. Dobbs' brace. Dr. Dobbs' nurse, , mentioned that

> >the Ponseti/ brace may be our back-up plan if Dr. Dobbs'

> >brace doesn't work again once Evan grows a bit. I am just afraid of

> >more blisters/sores. They look so bad, even though they don't seem

> >to hurt now that the brace is off.

> >

> > Jennie

> >

> >nokitty00 wrote:

> > I hope some of the more experienced parents will chime in here, but

> >from what I have read I think the Ponseti/ brace is more

> >effective for atypical cf. According to the global help booklet:

> >

> > " The standard shoes do not hold the atypical

> >short and chubby foot that often slips out causing blisters and

> >skin breakdown over the heel. This leads to poor compliance

> >and rapid recurrence of the deformity.

> >The pre-molded foot-ankle brace [D] developed to improve

> >compliance with bracing is extremely effective in the post cast

> >treatment of the atypical cases. It consists of sandals with three

> >straps of soft leather that hold the foot firmly on a soft, well

> >molded plastic sole. The sandals are attached to the bar by an

> >adjustable plastic device. Two openings at the heel allow the

> >parents to see that the hindfoot is in place. This brace provides

> >comfort to the child and relief to the parents, and has prevented

> >relapses. "

> >

> >I cannot find the link but you can go wo www.global-help.org - look

> >for publications, clubfoot Ponseti management.

> > Hi everyone,

> > > My son Luke is 5 months old. He has bilateral club foot. He

> >started

> > > casting after the second day of birth. When Luke was born it was

> >two

> > > days before Thanksgiving. Therefore we had to wait a couple days

> > > before an orthapedic could come and tell us what was wrong with

> >Lukes

> > > feet. The hospital kept me for three nights. Finaly an Orthapedic

> >doc

> > > came, Told us Luke has a 95% chance he will not need surgery. That

> > > made us happy. The doc says it can be fixed. he explained that

> > > castings needed to be done. We had no Idea about clubfoot, I can

> >say

> > > the doctor made us feel so much better telling us the things he

> >said,

> > > it relaxed us to much. Anyways; We were doing castings every week.

> > > The doctor told us his feet are doing wonderfull. We are more than

> > > 50% there! That made us feel good. Then the last cast will stay on

> > > for 3 Weeks. Well, when we went in to take off the 3 week cast

> >this

> > > is when things were not going so good anymore. The doc said his

> >feet

> > > are not getting better and he will need surgery. We were so

> > > disapointed. We believed for so many weeks our son was doing

> >great.

> > > They put more casts on him for two weeks while we waited for his

> > > braces. The doc also says he wants to do surgey when he is 9

> >months

> > > old. We got the braces, we hate the braces! We cant keep them on

> >his

> > > feet the right way. Anyways this is about the time I start to

> > > investigate clubfoot. We decide to go get a second opinion 3 hours

> > > away from us. This doc says posterior release as soon as possible.

> >We

> > > set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> > > info on how to talk with doc Ponseti. I sent him an e mail of

> >Lukes

> > > feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> > > come see him in Iowa. My husband and us are going. After all the

> >good

> > > things I hear about his work, I would be crazy not to. We leave

> > > thursday. Northern California to Iowa we go. Our appointment is on

> > > May 8th. I will post U all soon. Thanks for all the good info. And

> > > good luck to us all. Luke's Mommy. Dana

> > >

> > >

> > >

> > >

> > >

> > >

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Posted
Posted

I also owe everyone an apology as my lack of knowledge and confusion about the

different braces, as well as a somewhat unclear message about our experience

thus far probably instigated Kori's frustration. Anyway, I am quickly getting

educated and appreciate very much the information everyone has shared. I will

definitely make better use of the awesome resource going forward.

Jennie

frogabog wrote:

Hi all,

Just wanted to say that in light of some clarity on this, *pushed*

may be too harsh a word here. I just want everyone to know that

there is a great brace out there for our children that does not

involve an AFO. I don't think badly of Dr. Dobbs or his staff, I

know they're wonderful there and I respect them a great deal. I do

however love babies more and I do get a bit frustrated at times

thinking of how simple it is to get and use the PM's and wondering

why every doc isn't using them when they're seeing issues with other braces.

OK, 'nuf said. Thank you for listening!

Kori

At 10:36 AM 5/2/2006, you wrote:

>Dr. Dobbs brace is NOT based on the Ponseti FAB. They are

>two completely different braces! Major differences, Dobbs uses an

>articulating bar, the PM has a straight fixed bar (adjustable in

>length) which has never really been problematic for these

>kids. Dobbs also seems to be exclusively using an AFO (plastic

>molded brace - not a shoe) for every foot, whereas the PM FAB uses a

>leather " sandal " type " shoe " that is very soft and flexible at the

>ankle. These come in very tiny sizes and were developed specifically

>for itty bitty feet that don't work well with the Markell shoes

>(white, open toe boot) and especially for atypical feet.

>

>I'm feeling a bit grrrr about this... I feel that you should have

>been offered the PM from the get go or as soon as it was clear that

>the AFO wasn't going to work. I would suggest that you call them

>immediately and demand that you be fitted for the PM's and do not

>look back. These shoes will work for your child.

>

>While some feet are ok at first with these AFO's, I for one am very

>disappointed to be hearing over and over about the push to MAKE the

>Dobbs AFO work when it clearly isn't and leaving parents without

>bracing, or with feet that don't stay in them or feet that have

>sores... to WAIT or whatever for some miracle that the AFO will

>work. That is really so very NOT COOL IMO.

>

>AFO's in general... are not indicated for Ponseti corrected feet. I

>know that the jury is still out on whether these AFO's are

>appropriate for these feet long term, if at all. They area a static

>brace, and do not allow any movement of the ankle for one... I feel

>strongly that our clubfeet children need the exercise and flexibility

>that a SHOE allows for at the ankle. Static braces, are known to

>cause muscle atrophy and that is one thing you do not want with a clubfoot.

>

>Well, I suppose I could go on and on about why you should not be

>being pressured to use this brace but I don't think I need to. You

>know that your son needs the best brace for his feet and it sounds

>like you aren't interested in him being a guinea pig for this

>experimental brace that has already shown to you that it won't

>work. I am very respectful for Dr. Dobbs and the work he does for CF

>children. He IS a fantastic doctor! But I'm seeing a bit of tunnel

>vision here in regards to the push to only use this brace for every

>foot he corrects when he knows full well that there is a perfectly

>fine, and perfectly designed shoe out there. The bar... I am ok

>with. Articulating seems to be an ok thing even if I do feel it's

>mostly a convenience over the fixed bar. AFO's however... I don't

>like and would never want my child in for very long at all for the

>reasons I specified above. I do not feel that it is a viable option

>or even an option worth pursuing now that we have the PM's. PM's on

>the articulating bar would be great, but so far we haven't seen a lot

>of work towards integrating these on the articulating bar even though

>it's been suggested many times. I do know they're looking into it,

>but that's been the status of this idea for over a year if not longer

>and who knows when it'll actually happen.

>

>I hope you will be able to let Dobbs know that you will settle for

>nothing less than the PM's so your son can be braced as he

>deserves. Remember, YOU are the mama. YOU are also the

>customer. YOU are in control of what brace your child uses and your

>son, especially if he has complex or " atypical " clubfoot should

>absolutely have the brace designed for these special feet.

>

>Kori

>

>

>

>

>

>At 09:35 AM 5/2/2006, you wrote:

> >Thanks so much for the link. I am awful at navigating through

> >websites to find specific information!! Dr. Dobbs' brace was based

> >on the Ponseti/ brace, but doesn't have the " window " to see

> >the heel. My husband and I said that would be one thing to change

> >about Dr. Dobbs' brace. Dr. Dobbs' nurse, , mentioned that

> >the Ponseti/ brace may be our back-up plan if Dr. Dobbs'

> >brace doesn't work again once Evan grows a bit. I am just afraid of

> >more blisters/sores. They look so bad, even though they don't seem

> >to hurt now that the brace is off.

> >

> > Jennie

> >

> >nokitty00 wrote:

> > I hope some of the more experienced parents will chime in here, but

> >from what I have read I think the Ponseti/ brace is more

> >effective for atypical cf. According to the global help booklet:

> >

> > " The standard shoes do not hold the atypical

> >short and chubby foot that often slips out causing blisters and

> >skin breakdown over the heel. This leads to poor compliance

> >and rapid recurrence of the deformity.

> >The pre-molded foot-ankle brace [D] developed to improve

> >compliance with bracing is extremely effective in the post cast

> >treatment of the atypical cases. It consists of sandals with three

> >straps of soft leather that hold the foot firmly on a soft, well

> >molded plastic sole. The sandals are attached to the bar by an

> >adjustable plastic device. Two openings at the heel allow the

> >parents to see that the hindfoot is in place. This brace provides

> >comfort to the child and relief to the parents, and has prevented

> >relapses. "

> >

> >I cannot find the link but you can go wo www.global-help.org - look

> >for publications, clubfoot Ponseti management.

> > Hi everyone,

> > > My son Luke is 5 months old. He has bilateral club foot. He

> >started

> > > casting after the second day of birth. When Luke was born it was

> >two

> > > days before Thanksgiving. Therefore we had to wait a couple days

> > > before an orthapedic could come and tell us what was wrong with

> >Lukes

> > > feet. The hospital kept me for three nights. Finaly an Orthapedic

> >doc

> > > came, Told us Luke has a 95% chance he will not need surgery. That

> > > made us happy. The doc says it can be fixed. he explained that

> > > castings needed to be done. We had no Idea about clubfoot, I can

> >say

> > > the doctor made us feel so much better telling us the things he

> >said,

> > > it relaxed us to much. Anyways; We were doing castings every week.

> > > The doctor told us his feet are doing wonderfull. We are more than

> > > 50% there! That made us feel good. Then the last cast will stay on

> > > for 3 Weeks. Well, when we went in to take off the 3 week cast

> >this

> > > is when things were not going so good anymore. The doc said his

> >feet

> > > are not getting better and he will need surgery. We were so

> > > disapointed. We believed for so many weeks our son was doing

> >great.

> > > They put more casts on him for two weeks while we waited for his

> > > braces. The doc also says he wants to do surgey when he is 9

> >months

> > > old. We got the braces, we hate the braces! We cant keep them on

> >his

> > > feet the right way. Anyways this is about the time I start to

> > > investigate clubfoot. We decide to go get a second opinion 3 hours

> > > away from us. This doc says posterior release as soon as possible.

> >We

> > > set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> > > info on how to talk with doc Ponseti. I sent him an e mail of

> >Lukes

> > > feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> > > come see him in Iowa. My husband and us are going. After all the

> >good

> > > things I hear about his work, I would be crazy not to. We leave

> > > thursday. Northern California to Iowa we go. Our appointment is on

> > > May 8th. I will post U all soon. Thanks for all the good info. And

> > > good luck to us all. Luke's Mommy. Dana

> > >

> > >

> > >

> > >

> > >

> > >

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Posted
Posted

Jennie,

My daughter Sydney has B/A/C and has been in the P/M brace for 4

months. She started our wearing it 23 hours a day and is now only

wearing it 18 hours a day. She started wearing it less so that she

could use her toes and legs more to encourage muscle development for

crawling and walking. (She is 9 months old) She has never has ANY

problems with this brace. She does not mind putting it on, she has

never has any sores, bruises, or discomfort. It is easy to put on and

is very comfortable for her. I could not imagine her feet fitting in

anything else. They are very short and fat and the straps hold the

foot in place better than laces would. I can also see her foot

position at all times. The sandal is also cooler that a shoe would be.

In GA it can pretty hot playing outside. Please feel free to ask me

any questions. I am glad to help anyway I can.

Blanton

ville, GA

Sydney: 9 months old, Bilateral Atypical Clubfoot

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Posted
Posted

Hey Jennie,

Please don't feel the least bit intimidated by all the medical

terms!!!!! You will be spouting off ALL of these terms yourself in a

couple of months :)----how do you think the rest of us learned them

all? :) Glad you're here!!

Smiles,

& Grace 21mos

urcf FAB 13hrs

Hi everyone,

> > > > My son Luke is 5 months old. He has bilateral club foot. He

> > >started

> > > > casting after the second day of birth. When Luke was born it

was

> > >two

> > > > days before Thanksgiving. Therefore we had to wait a couple

days

> > > > before an orthapedic could come and tell us what was wrong

with

> > >Lukes

> > > > feet. The hospital kept me for three nights. Finaly an

Orthapedic

> > >doc

> > > > came, Told us Luke has a 95% chance he will not need surgery.

That

> > > > made us happy. The doc says it can be fixed. he explained that

> > > > castings needed to be done. We had no Idea about clubfoot, I

can

> > >say

> > > > the doctor made us feel so much better telling us the things

he

> > >said,

> > > > it relaxed us to much. Anyways; We were doing castings every

week.

> > > > The doctor told us his feet are doing wonderfull. We are more

than

> > > > 50% there! That made us feel good. Then the last cast will

stay on

> > > > for 3 Weeks. Well, when we went in to take off the 3 week cast

> > >this

> > > > is when things were not going so good anymore. The doc said

his

> > >feet

> > > > are not getting better and he will need surgery. We were so

> > > > disapointed. We believed for so many weeks our son was doing

> > >great.

> > > > They put more casts on him for two weeks while we waited for

his

> > > > braces. The doc also says he wants to do surgey when he is 9

> > >months

> > > > old. We got the braces, we hate the braces! We cant keep them

on

> > >his

> > > > feet the right way. Anyways this is about the time I start to

> > > > investigate clubfoot. We decide to go get a second opinion 3

hours

> > > > away from us. This doc says posterior release as soon as

possible.

> > >We

> > > > set the date. 1 week later I joined nosurgery4clubfoot. I

recieved

> > > > info on how to talk with doc Ponseti. I sent him an e mail of

> > >Lukes

> > > > feet. Dr Ponseti says Luke has aytipical clubfoot. He also

says to

> > > > come see him in Iowa. My husband and us are going. After all

the

> > >good

> > > > things I hear about his work, I would be crazy not to. We

leave

> > > > thursday. Northern California to Iowa we go. Our appointment

is on

> > > > May 8th. I will post U all soon. Thanks for all the good

info. And

> > > > good luck to us all. Luke's Mommy. Dana

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

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Posted
Posted

No apology needed here, Jennie. Remember that we all started out as confused as

you did. I still feel confused a lot! This is a group which is very supportive

and you can feel free to voice your thoughts here, positive or negative.

Kori is a passionate advocate for our babies, which is part of what I love about

her. She is also the board " expert " on shoes, blisters and such. And she is

not thin-skinned so no worries there. (Hi Kori!)

Glad you are a part of our group.

Carol and

Re: Jennie - about atypical

I also owe everyone an apology as my lack of knowledge and confusion about the

different braces, as well as a somewhat unclear message about our experience

thus far probably instigated Kori's frustration. Anyway, I am quickly getting

educated and appreciate very much the information everyone has shared. I will

definitely make better use of the awesome resource going forward.

Jennie

frogabog wrote:

Hi all,

Just wanted to say that in light of some clarity on this, *pushed*

may be too harsh a word here. I just want everyone to know that

there is a great brace out there for our children that does not

involve an AFO. I don't think badly of Dr. Dobbs or his staff, I

know they're wonderful there and I respect them a great deal. I do

however love babies more and I do get a bit frustrated at times

thinking of how simple it is to get and use the PM's and wondering

why every doc isn't using them when they're seeing issues with other braces.

OK, 'nuf said. Thank you for listening!

Kori

At 10:36 AM 5/2/2006, you wrote:

>Dr. Dobbs brace is NOT based on the Ponseti FAB. They are

>two completely different braces! Major differences, Dobbs uses an

>articulating bar, the PM has a straight fixed bar (adjustable in

>length) which has never really been problematic for these

>kids. Dobbs also seems to be exclusively using an AFO (plastic

>molded brace - not a shoe) for every foot, whereas the PM FAB uses a

>leather " sandal " type " shoe " that is very soft and flexible at the

>ankle. These come in very tiny sizes and were developed specifically

>for itty bitty feet that don't work well with the Markell shoes

>(white, open toe boot) and especially for atypical feet.

>

>I'm feeling a bit grrrr about this... I feel that you should have

>been offered the PM from the get go or as soon as it was clear that

>the AFO wasn't going to work. I would suggest that you call them

>immediately and demand that you be fitted for the PM's and do not

>look back. These shoes will work for your child.

>

>While some feet are ok at first with these AFO's, I for one am very

>disappointed to be hearing over and over about the push to MAKE the

>Dobbs AFO work when it clearly isn't and leaving parents without

>bracing, or with feet that don't stay in them or feet that have

>sores... to WAIT or whatever for some miracle that the AFO will

>work. That is really so very NOT COOL IMO.

>

>AFO's in general... are not indicated for Ponseti corrected feet. I

>know that the jury is still out on whether these AFO's are

>appropriate for these feet long term, if at all. They area a static

>brace, and do not allow any movement of the ankle for one... I feel

>strongly that our clubfeet children need the exercise and flexibility

>that a SHOE allows for at the ankle. Static braces, are known to

>cause muscle atrophy and that is one thing you do not want with a clubfoot.

>

>Well, I suppose I could go on and on about why you should not be

>being pressured to use this brace but I don't think I need to. You

>know that your son needs the best brace for his feet and it sounds

>like you aren't interested in him being a guinea pig for this

>experimental brace that has already shown to you that it won't

>work. I am very respectful for Dr. Dobbs and the work he does for CF

>children. He IS a fantastic doctor! But I'm seeing a bit of tunnel

>vision here in regards to the push to only use this brace for every

>foot he corrects when he knows full well that there is a perfectly

>fine, and perfectly designed shoe out there. The bar... I am ok

>with. Articulating seems to be an ok thing even if I do feel it's

>mostly a convenience over the fixed bar. AFO's however... I don't

>like and would never want my child in for very long at all for the

>reasons I specified above. I do not feel that it is a viable option

>or even an option worth pursuing now that we have the PM's. PM's on

>the articulating bar would be great, but so far we haven't seen a lot

>of work towards integrating these on the articulating bar even though

>it's been suggested many times. I do know they're looking into it,

>but that's been the status of this idea for over a year if not longer

>and who knows when it'll actually happen.

>

>I hope you will be able to let Dobbs know that you will settle for

>nothing less than the PM's so your son can be braced as he

>deserves. Remember, YOU are the mama. YOU are also the

>customer. YOU are in control of what brace your child uses and your

>son, especially if he has complex or " atypical " clubfoot should

>absolutely have the brace designed for these special feet.

>

>Kori

>

>

>

>

>

>At 09:35 AM 5/2/2006, you wrote:

> >Thanks so much for the link. I am awful at navigating through

> >websites to find specific information!! Dr. Dobbs' brace was based

> >on the Ponseti/ brace, but doesn't have the " window " to see

> >the heel. My husband and I said that would be one thing to change

> >about Dr. Dobbs' brace. Dr. Dobbs' nurse, , mentioned that

> >the Ponseti/ brace may be our back-up plan if Dr. Dobbs'

> >brace doesn't work again once Evan grows a bit. I am just afraid of

> >more blisters/sores. They look so bad, even though they don't seem

> >to hurt now that the brace is off.

> >

> > Jennie

> >

> >nokitty00 wrote:

> > I hope some of the more experienced parents will chime in here, but

> >from what I have read I think the Ponseti/ brace is more

> >effective for atypical cf. According to the global help booklet:

> >

> > " The standard shoes do not hold the atypical

> >short and chubby foot that often slips out causing blisters and

> >skin breakdown over the heel. This leads to poor compliance

> >and rapid recurrence of the deformity.

> >The pre-molded foot-ankle brace [D] developed to improve

> >compliance with bracing is extremely effective in the post cast

> >treatment of the atypical cases. It consists of sandals with three

> >straps of soft leather that hold the foot firmly on a soft, well

> >molded plastic sole. The sandals are attached to the bar by an

> >adjustable plastic device. Two openings at the heel allow the

> >parents to see that the hindfoot is in place. This brace provides

> >comfort to the child and relief to the parents, and has prevented

> >relapses. "

> >

> >I cannot find the link but you can go wo www.global-help.org - look

> >for publications, clubfoot Ponseti management.

> > Hi everyone,

> > > My son Luke is 5 months old. He has bilateral club foot. He

> >started

> > > casting after the second day of birth. When Luke was born it was

> >two

> > > days before Thanksgiving. Therefore we had to wait a couple days

> > > before an orthapedic could come and tell us what was wrong with

> >Lukes

> > > feet. The hospital kept me for three nights. Finaly an Orthapedic

> >doc

> > > came, Told us Luke has a 95% chance he will not need surgery. That

> > > made us happy. The doc says it can be fixed. he explained that

> > > castings needed to be done. We had no Idea about clubfoot, I can

> >say

> > > the doctor made us feel so much better telling us the things he

> >said,

> > > it relaxed us to much. Anyways; We were doing castings every week.

> > > The doctor told us his feet are doing wonderfull. We are more than

> > > 50% there! That made us feel good. Then the last cast will stay on

> > > for 3 Weeks. Well, when we went in to take off the 3 week cast

> >this

> > > is when things were not going so good anymore. The doc said his

> >feet

> > > are not getting better and he will need surgery. We were so

> > > disapointed. We believed for so many weeks our son was doing

> >great.

> > > They put more casts on him for two weeks while we waited for his

> > > braces. The doc also says he wants to do surgey when he is 9

> >months

> > > old. We got the braces, we hate the braces! We cant keep them on

> >his

> > > feet the right way. Anyways this is about the time I start to

> > > investigate clubfoot. We decide to go get a second opinion 3 hours

> > > away from us. This doc says posterior release as soon as possible.

> >We

> > > set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> > > info on how to talk with doc Ponseti. I sent him an e mail of

> >Lukes

> > > feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> > > come see him in Iowa. My husband and us are going. After all the

> >good

> > > things I hear about his work, I would be crazy not to. We leave

> > > thursday. Northern California to Iowa we go. Our appointment is on

> > > May 8th. I will post U all soon. Thanks for all the good info. And

> > > good luck to us all. Luke's Mommy. Dana

> > >

> > >

> > >

> > >

> > >

> > >

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Posted
Posted

Thanks so much to everyone for understanding. Looking forward to the AWESOME

support and information this network provides.

Jennie

Carol Shelton wrote:

No apology needed here, Jennie. Remember that we all started out as confused

as you did. I still feel confused a lot! This is a group which is very

supportive and you can feel free to voice your thoughts here, positive or

negative.

Kori is a passionate advocate for our babies, which is part of what I love about

her. She is also the board " expert " on shoes, blisters and such. And she is

not thin-skinned so no worries there. (Hi Kori!)

Glad you are a part of our group.

Carol and

Re: Jennie - about atypical

I also owe everyone an apology as my lack of knowledge and confusion about the

different braces, as well as a somewhat unclear message about our experience

thus far probably instigated Kori's frustration. Anyway, I am quickly getting

educated and appreciate very much the information everyone has shared. I will

definitely make better use of the awesome resource going forward.

Jennie

frogabog wrote:

Hi all,

Just wanted to say that in light of some clarity on this, *pushed*

may be too harsh a word here. I just want everyone to know that

there is a great brace out there for our children that does not

involve an AFO. I don't think badly of Dr. Dobbs or his staff, I

know they're wonderful there and I respect them a great deal. I do

however love babies more and I do get a bit frustrated at times

thinking of how simple it is to get and use the PM's and wondering

why every doc isn't using them when they're seeing issues with other braces.

OK, 'nuf said. Thank you for listening!

Kori

At 10:36 AM 5/2/2006, you wrote:

>Dr. Dobbs brace is NOT based on the Ponseti FAB. They are

>two completely different braces! Major differences, Dobbs uses an

>articulating bar, the PM has a straight fixed bar (adjustable in

>length) which has never really been problematic for these

>kids. Dobbs also seems to be exclusively using an AFO (plastic

>molded brace - not a shoe) for every foot, whereas the PM FAB uses a

>leather " sandal " type " shoe " that is very soft and flexible at the

>ankle. These come in very tiny sizes and were developed specifically

>for itty bitty feet that don't work well with the Markell shoes

>(white, open toe boot) and especially for atypical feet.

>

>I'm feeling a bit grrrr about this... I feel that you should have

>been offered the PM from the get go or as soon as it was clear that

>the AFO wasn't going to work. I would suggest that you call them

>immediately and demand that you be fitted for the PM's and do not

>look back. These shoes will work for your child.

>

>While some feet are ok at first with these AFO's, I for one am very

>disappointed to be hearing over and over about the push to MAKE the

>Dobbs AFO work when it clearly isn't and leaving parents without

>bracing, or with feet that don't stay in them or feet that have

>sores... to WAIT or whatever for some miracle that the AFO will

>work. That is really so very NOT COOL IMO.

>

>AFO's in general... are not indicated for Ponseti corrected feet. I

>know that the jury is still out on whether these AFO's are

>appropriate for these feet long term, if at all. They area a static

>brace, and do not allow any movement of the ankle for one... I feel

>strongly that our clubfeet children need the exercise and flexibility

>that a SHOE allows for at the ankle. Static braces, are known to

>cause muscle atrophy and that is one thing you do not want with a clubfoot.

>

>Well, I suppose I could go on and on about why you should not be

>being pressured to use this brace but I don't think I need to. You

>know that your son needs the best brace for his feet and it sounds

>like you aren't interested in him being a guinea pig for this

>experimental brace that has already shown to you that it won't

>work. I am very respectful for Dr. Dobbs and the work he does for CF

>children. He IS a fantastic doctor! But I'm seeing a bit of tunnel

>vision here in regards to the push to only use this brace for every

>foot he corrects when he knows full well that there is a perfectly

>fine, and perfectly designed shoe out there. The bar... I am ok

>with. Articulating seems to be an ok thing even if I do feel it's

>mostly a convenience over the fixed bar. AFO's however... I don't

>like and would never want my child in for very long at all for the

>reasons I specified above. I do not feel that it is a viable option

>or even an option worth pursuing now that we have the PM's. PM's on

>the articulating bar would be great, but so far we haven't seen a lot

>of work towards integrating these on the articulating bar even though

>it's been suggested many times. I do know they're looking into it,

>but that's been the status of this idea for over a year if not longer

>and who knows when it'll actually happen.

>

>I hope you will be able to let Dobbs know that you will settle for

>nothing less than the PM's so your son can be braced as he

>deserves. Remember, YOU are the mama. YOU are also the

>customer. YOU are in control of what brace your child uses and your

>son, especially if he has complex or " atypical " clubfoot should

>absolutely have the brace designed for these special feet.

>

>Kori

>

>

>

>

>

>At 09:35 AM 5/2/2006, you wrote:

> >Thanks so much for the link. I am awful at navigating through

> >websites to find specific information!! Dr. Dobbs' brace was based

> >on the Ponseti/ brace, but doesn't have the " window " to see

> >the heel. My husband and I said that would be one thing to change

> >about Dr. Dobbs' brace. Dr. Dobbs' nurse, , mentioned that

> >the Ponseti/ brace may be our back-up plan if Dr. Dobbs'

> >brace doesn't work again once Evan grows a bit. I am just afraid of

> >more blisters/sores. They look so bad, even though they don't seem

> >to hurt now that the brace is off.

> >

> > Jennie

> >

> >nokitty00 wrote:

> > I hope some of the more experienced parents will chime in here, but

> >from what I have read I think the Ponseti/ brace is more

> >effective for atypical cf. According to the global help booklet:

> >

> > " The standard shoes do not hold the atypical

> >short and chubby foot that often slips out causing blisters and

> >skin breakdown over the heel. This leads to poor compliance

> >and rapid recurrence of the deformity.

> >The pre-molded foot-ankle brace [D] developed to improve

> >compliance with bracing is extremely effective in the post cast

> >treatment of the atypical cases. It consists of sandals with three

> >straps of soft leather that hold the foot firmly on a soft, well

> >molded plastic sole. The sandals are attached to the bar by an

> >adjustable plastic device. Two openings at the heel allow the

> >parents to see that the hindfoot is in place. This brace provides

> >comfort to the child and relief to the parents, and has prevented

> >relapses. "

> >

> >I cannot find the link but you can go wo www.global-help.org - look

> >for publications, clubfoot Ponseti management.

> > Hi everyone,

> > > My son Luke is 5 months old. He has bilateral club foot. He

> >started

> > > casting after the second day of birth. When Luke was born it was

> >two

> > > days before Thanksgiving. Therefore we had to wait a couple days

> > > before an orthapedic could come and tell us what was wrong with

> >Lukes

> > > feet. The hospital kept me for three nights. Finaly an Orthapedic

> >doc

> > > came, Told us Luke has a 95% chance he will not need surgery. That

> > > made us happy. The doc says it can be fixed. he explained that

> > > castings needed to be done. We had no Idea about clubfoot, I can

> >say

> > > the doctor made us feel so much better telling us the things he

> >said,

> > > it relaxed us to much. Anyways; We were doing castings every week.

> > > The doctor told us his feet are doing wonderfull. We are more than

> > > 50% there! That made us feel good. Then the last cast will stay on

> > > for 3 Weeks. Well, when we went in to take off the 3 week cast

> >this

> > > is when things were not going so good anymore. The doc said his

> >feet

> > > are not getting better and he will need surgery. We were so

> > > disapointed. We believed for so many weeks our son was doing

> >great.

> > > They put more casts on him for two weeks while we waited for his

> > > braces. The doc also says he wants to do surgey when he is 9

> >months

> > > old. We got the braces, we hate the braces! We cant keep them on

> >his

> > > feet the right way. Anyways this is about the time I start to

> > > investigate clubfoot. We decide to go get a second opinion 3 hours

> > > away from us. This doc says posterior release as soon as possible.

> >We

> > > set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> > > info on how to talk with doc Ponseti. I sent him an e mail of

> >Lukes

> > > feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> > > come see him in Iowa. My husband and us are going. After all the

> >good

> > > things I hear about his work, I would be crazy not to. We leave

> > > thursday. Northern California to Iowa we go. Our appointment is on

> > > May 8th. I will post U all soon. Thanks for all the good info. And

> > > good luck to us all. Luke's Mommy. Dana

> > >

> > >

> > >

> > >

> > >

> > >

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Posted
Posted

Kori who? hahahah

(hi Kori!)

s.

Re: Jennie - about atypical

I also owe everyone an apology as my lack of knowledge and confusion about

the different braces, as well as a somewhat unclear message about our experience

thus far probably instigated Kori's frustration. Anyway, I am quickly getting

educated and appreciate very much the information everyone has shared. I will

definitely make better use of the awesome resource going forward.

Jennie

frogabog wrote:

Hi all,

Just wanted to say that in light of some clarity on this, *pushed*

may be too harsh a word here. I just want everyone to know that

there is a great brace out there for our children that does not

involve an AFO. I don't think badly of Dr. Dobbs or his staff, I

know they're wonderful there and I respect them a great deal. I do

however love babies more and I do get a bit frustrated at times

thinking of how simple it is to get and use the PM's and wondering

why every doc isn't using them when they're seeing issues with other braces.

OK, 'nuf said. Thank you for listening!

Kori

At 10:36 AM 5/2/2006, you wrote:

>Dr. Dobbs brace is NOT based on the Ponseti FAB. They are

>two completely different braces! Major differences, Dobbs uses an

>articulating bar, the PM has a straight fixed bar (adjustable in

>length) which has never really been problematic for these

>kids. Dobbs also seems to be exclusively using an AFO (plastic

>molded brace - not a shoe) for every foot, whereas the PM FAB uses a

>leather " sandal " type " shoe " that is very soft and flexible at the

>ankle. These come in very tiny sizes and were developed specifically

>for itty bitty feet that don't work well with the Markell shoes

>(white, open toe boot) and especially for atypical feet.

>

>I'm feeling a bit grrrr about this... I feel that you should have

>been offered the PM from the get go or as soon as it was clear that

>the AFO wasn't going to work. I would suggest that you call them

>immediately and demand that you be fitted for the PM's and do not

>look back. These shoes will work for your child.

>

>While some feet are ok at first with these AFO's, I for one am very

>disappointed to be hearing over and over about the push to MAKE the

>Dobbs AFO work when it clearly isn't and leaving parents without

>bracing, or with feet that don't stay in them or feet that have

>sores... to WAIT or whatever for some miracle that the AFO will

>work. That is really so very NOT COOL IMO.

>

>AFO's in general... are not indicated for Ponseti corrected feet. I

>know that the jury is still out on whether these AFO's are

>appropriate for these feet long term, if at all. They area a static

>brace, and do not allow any movement of the ankle for one... I feel

>strongly that our clubfeet children need the exercise and flexibility

>that a SHOE allows for at the ankle. Static braces, are known to

>cause muscle atrophy and that is one thing you do not want with a clubfoot.

>

>Well, I suppose I could go on and on about why you should not be

>being pressured to use this brace but I don't think I need to. You

>know that your son needs the best brace for his feet and it sounds

>like you aren't interested in him being a guinea pig for this

>experimental brace that has already shown to you that it won't

>work. I am very respectful for Dr. Dobbs and the work he does for CF

>children. He IS a fantastic doctor! But I'm seeing a bit of tunnel

>vision here in regards to the push to only use this brace for every

>foot he corrects when he knows full well that there is a perfectly

>fine, and perfectly designed shoe out there. The bar... I am ok

>with. Articulating seems to be an ok thing even if I do feel it's

>mostly a convenience over the fixed bar. AFO's however... I don't

>like and would never want my child in for very long at all for the

>reasons I specified above. I do not feel that it is a viable option

>or even an option worth pursuing now that we have the PM's. PM's on

>the articulating bar would be great, but so far we haven't seen a lot

>of work towards integrating these on the articulating bar even though

>it's been suggested many times. I do know they're looking into it,

>but that's been the status of this idea for over a year if not longer

>and who knows when it'll actually happen.

>

>I hope you will be able to let Dobbs know that you will settle for

>nothing less than the PM's so your son can be braced as he

>deserves. Remember, YOU are the mama. YOU are also the

>customer. YOU are in control of what brace your child uses and your

>son, especially if he has complex or " atypical " clubfoot should

>absolutely have the brace designed for these special feet.

>

>Kori

>

>

>

>

>

>At 09:35 AM 5/2/2006, you wrote:

> >Thanks so much for the link. I am awful at navigating through

> >websites to find specific information!! Dr. Dobbs' brace was based

> >on the Ponseti/ brace, but doesn't have the " window " to see

> >the heel. My husband and I said that would be one thing to change

> >about Dr. Dobbs' brace. Dr. Dobbs' nurse, , mentioned that

> >the Ponseti/ brace may be our back-up plan if Dr. Dobbs'

> >brace doesn't work again once Evan grows a bit. I am just afraid of

> >more blisters/sores. They look so bad, even though they don't seem

> >to hurt now that the brace is off.

> >

> > Jennie

> >

> >nokitty00 wrote:

> > I hope some of the more experienced parents will chime in here, but

> >from what I have read I think the Ponseti/ brace is more

> >effective for atypical cf. According to the global help booklet:

> >

> > " The standard shoes do not hold the atypical

> >short and chubby foot that often slips out causing blisters and

> >skin breakdown over the heel. This leads to poor compliance

> >and rapid recurrence of the deformity.

> >The pre-molded foot-ankle brace [D] developed to improve

> >compliance with bracing is extremely effective in the post cast

> >treatment of the atypical cases. It consists of sandals with three

> >straps of soft leather that hold the foot firmly on a soft, well

> >molded plastic sole. The sandals are attached to the bar by an

> >adjustable plastic device. Two openings at the heel allow the

> >parents to see that the hindfoot is in place. This brace provides

> >comfort to the child and relief to the parents, and has prevented

> >relapses. "

> >

> >I cannot find the link but you can go wo www.global-help.org - look

> >for publications, clubfoot Ponseti management.

> > Hi everyone,

> > > My son Luke is 5 months old. He has bilateral club foot. He

> >started

> > > casting after the second day of birth. When Luke was born it was

> >two

> > > days before Thanksgiving. Therefore we had to wait a couple days

> > > before an orthapedic could come and tell us what was wrong with

> >Lukes

> > > feet. The hospital kept me for three nights. Finaly an Orthapedic

> >doc

> > > came, Told us Luke has a 95% chance he will not need surgery. That

> > > made us happy. The doc says it can be fixed. he explained that

> > > castings needed to be done. We had no Idea about clubfoot, I can

> >say

> > > the doctor made us feel so much better telling us the things he

> >said,

> > > it relaxed us to much. Anyways; We were doing castings every week.

> > > The doctor told us his feet are doing wonderfull. We are more than

> > > 50% there! That made us feel good. Then the last cast will stay on

> > > for 3 Weeks. Well, when we went in to take off the 3 week cast

> >this

> > > is when things were not going so good anymore. The doc said his

> >feet

> > > are not getting better and he will need surgery. We were so

> > > disapointed. We believed for so many weeks our son was doing

> >great.

> > > They put more casts on him for two weeks while we waited for his

> > > braces. The doc also says he wants to do surgey when he is 9

> >months

> > > old. We got the braces, we hate the braces! We cant keep them on

> >his

> > > feet the right way. Anyways this is about the time I start to

> > > investigate clubfoot. We decide to go get a second opinion 3 hours

> > > away from us. This doc says posterior release as soon as possible.

> >We

> > > set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> > > info on how to talk with doc Ponseti. I sent him an e mail of

> >Lukes

> > > feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> > > come see him in Iowa. My husband and us are going. After all the

> >good

> > > things I hear about his work, I would be crazy not to. We leave

> > > thursday. Northern California to Iowa we go. Our appointment is on

> > > May 8th. I will post U all soon. Thanks for all the good info. And

> > > good luck to us all. Luke's Mommy. Dana

> > >

> > >

> > >

> > >

> > >

> > >

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Posted
Posted

Niki,

Is your bar the same plastic/velcro boot and insert on a straight bar? Is

that for walking better in? I am very interested in seeing that, I will be

looking for you Monday, I may want one too!!

Marci & Mollie 5-25-05

bcf dobbs 16/7

Niki Winking wrote:

I just want to chime in about Dobbs brace too-my son Mason(5-23-05) has

been in it since he was five months old. Although he did endure a

blister on his heel, and a sore in between his two baby toes when he

first started out wearing it(we left if off for a longer time in between

so it could heal, and cut small holes in the back of the plastic booties

to get air inside of it so he wouldn't sweat so much), he is doing great

with it now. And Dobbs has changed our bar(and I assume other people's

as well) to a non-articulating straight bar now.

But best of luck to everyone, no matter what method/brace they're using.

Niki & Mason(5-23-05, rcf Dobbs 16/7)

Re: Jennie - about atypical

Thanks so much for the link. I am awful at navigating through websites

to find specific information!! Dr. Dobbs' brace was based on the

Ponseti/ brace, but doesn't have the " window " to see the heel.

My husband and I said that would be one thing to change about Dr. Dobbs'

brace. Dr. Dobbs' nurse, , mentioned that the Ponseti/

brace may be our back-up plan if Dr. Dobbs' brace doesn't work again

once Evan grows a bit. I am just afraid of more blisters/sores. They

look so bad, even though they don't seem to hurt now that the brace is

off.

Jennie

nokitty00 wrote:

I hope some of the more experienced parents will chime in here, but

from what I have read I think the Ponseti/ brace is more

effective for atypical cf. According to the global help booklet:

" The standard shoes do not hold the atypical

short and chubby foot that often slips out causing blisters and

skin breakdown over the heel. This leads to poor compliance

and rapid recurrence of the deformity.

The pre-molded foot-ankle brace [D] developed to improve

compliance with bracing is extremely effective in the post cast

treatment of the atypical cases. It consists of sandals with three

straps of soft leather that hold the foot firmly on a soft, well

molded plastic sole. The sandals are attached to the bar by an

adjustable plastic device. Two openings at the heel allow the

parents to see that the hindfoot is in place. This brace provides

comfort to the child and relief to the parents, and has prevented

relapses. "

I cannot find the link but you can go wo www.global-help.org - look

for publications, clubfoot Ponseti management.

Hi everyone,

> My son Luke is 5 months old. He has bilateral club foot. He

started

> casting after the second day of birth. When Luke was born it was

two

> days before Thanksgiving. Therefore we had to wait a couple days

> before an orthapedic could come and tell us what was wrong with

Lukes

> feet. The hospital kept me for three nights. Finaly an Orthapedic

doc

> came, Told us Luke has a 95% chance he will not need surgery. That

> made us happy. The doc says it can be fixed. he explained that

> castings needed to be done. We had no Idea about clubfoot, I can

say

> the doctor made us feel so much better telling us the things he

said,

> it relaxed us to much. Anyways; We were doing castings every week.

> The doctor told us his feet are doing wonderfull. We are more than

> 50% there! That made us feel good. Then the last cast will stay on

> for 3 Weeks. Well, when we went in to take off the 3 week cast

this

> is when things were not going so good anymore. The doc said his

feet

> are not getting better and he will need surgery. We were so

> disapointed. We believed for so many weeks our son was doing

great.

> They put more casts on him for two weeks while we waited for his

> braces. The doc also says he wants to do surgey when he is 9

months

> old. We got the braces, we hate the braces! We cant keep them on

his

> feet the right way. Anyways this is about the time I start to

> investigate clubfoot. We decide to go get a second opinion 3 hours

> away from us. This doc says posterior release as soon as possible.

We

> set the date. 1 week later I joined nosurgery4clubfoot. I recieved

> info on how to talk with doc Ponseti. I sent him an e mail of

Lukes

> feet. Dr Ponseti says Luke has aytipical clubfoot. He also says to

> come see him in Iowa. My husband and us are going. After all the

good

> things I hear about his work, I would be crazy not to. We leave

> thursday. Northern California to Iowa we go. Our appointment is on

> May 8th. I will post U all soon. Thanks for all the good info. And

> good luck to us all. Luke's Mommy. Dana

>

>

>

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>

>

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Posted
Posted

Marci-

Yes, we have the plastic booties w/Velcro, and the straight bar. Two

checkups ago Stefani in the SHOP changed Mason's articulating bar to a

straight one-she said that that is what they are doing to all the braces

now. It definitely hasn't stopped or slowed Mason one bit :-)

I actually wanted to talk to Dr. Dobbs and a about the brace-I've

seen a few pictures on this site with kids with the brace/bar and they

have what looks like little blocks underneath the toes(looks like to

help balance better maybe and possibly could help to walk better in

them, or at least keep him from leaning forward and pushing his feet

up)-we'll see though.-or if anyone knows what these are please let us

know.

And we'll be looking for you too on Monday in st. louis.

Niki & Mason(5-23-05,rcf,15/7)

RE: Jennie - about atypical

Niki,

Is your bar the same plastic/velcro boot and insert on a straight bar?

Is that for walking better in? I am very interested in seeing that, I

will be looking for you Monday, I may want one too!!

Marci & Mollie 5-25-05

bcf dobbs 16/7

Niki Winking wrote:

I just want to chime in about Dobbs brace too-my son Mason(5-23-05)

has

been in it since he was five months old. Although he did endure a

blister on his heel, and a sore in between his two baby toes when he

first started out wearing it(we left if off for a longer time in between

so it could heal, and cut small holes in the back of the plastic booties

to get air inside of it so he wouldn't sweat so much), he is doing great

with it now. And Dobbs has changed our bar(and I assume other people's

as well) to a non-articulating straight bar now.

But best of luck to everyone, no matter what method/brace they're using.

Niki & Mason(5-23-05, rcf Dobbs 16/7)

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Hey Nicki,

So what's up with that? I wonder why the change from the articulating

bar to straight. I hadn't heard anything about that.

My son has the little " toe pads " - although he is using the Markell

shoes, not the AFO's, but he has the articulating bar and it makes his

feet about 1 1/2 " off the ground, so the toe pads keep his feet from

tipping forward (they can still rock back, but we decided that's

probably good for his dorsiflexion and doesn't cause him any trouble).

It is still sort of like walking on platform shoes but he is able to

walk holding my hand while wearing the brace and I don't doubt that he

will be able to walk with it on within a few months or so.

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-14hrs/day)

> I just want to chime in about Dobbs brace too-my son Mason(5-23-05)

> has

> been in it since he was five months old. Although he did endure a

> blister on his heel, and a sore in between his two baby toes when he

> first started out wearing it(we left if off for a longer time in between

> so it could heal, and cut small holes in the back of the plastic booties

> to get air inside of it so he wouldn't sweat so much), he is doing great

> with it now. And Dobbs has changed our bar(and I assume other people's

> as well) to a non-articulating straight bar now.

> But best of luck to everyone, no matter what method/brace they're using.

>

> Niki & Mason(5-23-05, rcf Dobbs 16/7)

>

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