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Hi, Glen & Carly-

Are you sure that your son's feet are fully corrected? If the brace

is set up correctly and he's still able to pull his feet out, it's

usually an indicator that the foot/feet are not completely

corrected. What doctor are you seeing? Perhaps we can suggest

another doctor in your area for a second opinion? The doctor should

be able to correct the feet with casts and the percutaneous

tenotomy. There shouldn't be a need for physical therapy to " finish

correction " . Doctors will prescribe stretches- but only to keep the

tendons stretched and supple- not to " aid in the correction " if you

will.

If you want to share pictures with us on the CFPics group, we can

give you our opinions as well.

Regards,

& (3-16-00, left clubfoot)

> Dear Group,

>

> My wife and I have been experiencing similar problems with our

> son's shoes. He is 3 months old, and has been out of his casts

and

> already on his second pair of shoes since August 11th (having been

> switched from the Markel TM-1644 to the open heel TM-1645 style).

>

> We have been to the orthodics specialists 4 times for

adjustments

> to no avail with our son continuing to pull his feet out or raise

his

> heels up.

>

> In our last visit with the Doctor- who also could not get the

shoes

> to stay on properly - a suggestion of some sort of physiotherapy

was

> mentioned as an alternative method if the shoes continued to be a

> problem.

>

> Has anyone heard of (or tried) anything like this?

> What would it entail? Or is this simply not a viable option?

>

> Any help or info would be greatly appreciated.

>

> Respectfully,

>

> Glen and Carly

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Hi, Glen & Carly-

Are you sure that your son's feet are fully corrected? If the brace

is set up correctly and he's still able to pull his feet out, it's

usually an indicator that the foot/feet are not completely

corrected. What doctor are you seeing? Perhaps we can suggest

another doctor in your area for a second opinion? The doctor should

be able to correct the feet with casts and the percutaneous

tenotomy. There shouldn't be a need for physical therapy to " finish

correction " . Doctors will prescribe stretches- but only to keep the

tendons stretched and supple- not to " aid in the correction " if you

will.

If you want to share pictures with us on the CFPics group, we can

give you our opinions as well.

Regards,

& (3-16-00, left clubfoot)

> Dear Group,

>

> My wife and I have been experiencing similar problems with our

> son's shoes. He is 3 months old, and has been out of his casts

and

> already on his second pair of shoes since August 11th (having been

> switched from the Markel TM-1644 to the open heel TM-1645 style).

>

> We have been to the orthodics specialists 4 times for

adjustments

> to no avail with our son continuing to pull his feet out or raise

his

> heels up.

>

> In our last visit with the Doctor- who also could not get the

shoes

> to stay on properly - a suggestion of some sort of physiotherapy

was

> mentioned as an alternative method if the shoes continued to be a

> problem.

>

> Has anyone heard of (or tried) anything like this?

> What would it entail? Or is this simply not a viable option?

>

> Any help or info would be greatly appreciated.

>

> Respectfully,

>

> Glen and Carly

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Hello ,

Thank you for your response. The doctor we are seeing has been

trained by Dr. Ponseti in Iowa and has come highly recommended by

many physicians here in town. We weren't thinking the tenotomy

wasn't successful, when we get some pictures we will send them.

Maybe I should explain our situation a bit better. We believe that

Teddy has taught himself to wiggle his feet (till they bruise) in

order to attempt to get the shoes off (in the beginning he could

actually get them off, but the orthodics people did fix that). Teddy

is colic and has been for the last 2 months. He has medication for

acid reflux and apparent lactose intolerance seem to be making a

contributing to the problems. However, when he first got the shoes

he was at his worst and the crying and pulling his knees to his tummy

caused the shoes to come off. He seems to know that trying to move

his feet independently can loosen the shoes and he could eventually

after a few days free his feet somewhat.

So the doctor saw us last week and himself instructed the orthodics

people to rebuild the heel and take off the shoe tongue in order to

secure his foot properly. I was quite concerned about whether the

shoes would ever fit and suggested putting Teddy back in casts for

another month until his feet are a bit bigger. However, that is when

the doctor assured me that there is always another option and briefly

mentioned (over my son's crying) that maybe some physiotherapy may be

an option (perhaps in all the confusion and excitement we

misinterpreted his suggestion).

Since we have our follow-up appointment this week, I thought I would

do some research so I would be better prepared, that is when I came

across your group. I was reading through several comments and

realized that we are not alone in the " shoe problem " area and were

hoping that someone like yourself may offer some suggestions etc.

since there seems to be a lot of helpful advice from " veteran "

parents like yourself.

We appreciate your concern and comments and will be sure to let you

know the outcome of our appointment tomorrow.

Thanks again,

Carly

> > Dear Group,

> >

> > My wife and I have been experiencing similar problems with

our

> > son's shoes. He is 3 months old, and has been out of his casts

> and

> > already on his second pair of shoes since August 11th (having

been

> > switched from the Markel TM-1644 to the open heel TM-1645 style).

> >

> > We have been to the orthodics specialists 4 times for

> adjustments

> > to no avail with our son continuing to pull his feet out or raise

> his

> > heels up.

> >

> > In our last visit with the Doctor- who also could not get the

> shoes

> > to stay on properly - a suggestion of some sort of physiotherapy

> was

> > mentioned as an alternative method if the shoes continued to be a

> > problem.

> >

> > Has anyone heard of (or tried) anything like this?

> > What would it entail? Or is this simply not a viable option?

> >

> > Any help or info would be greatly appreciated.

> >

> > Respectfully,

> >

> > Glen and Carly

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Hello ,

Thank you for your response. The doctor we are seeing has been

trained by Dr. Ponseti in Iowa and has come highly recommended by

many physicians here in town. We weren't thinking the tenotomy

wasn't successful, when we get some pictures we will send them.

Maybe I should explain our situation a bit better. We believe that

Teddy has taught himself to wiggle his feet (till they bruise) in

order to attempt to get the shoes off (in the beginning he could

actually get them off, but the orthodics people did fix that). Teddy

is colic and has been for the last 2 months. He has medication for

acid reflux and apparent lactose intolerance seem to be making a

contributing to the problems. However, when he first got the shoes

he was at his worst and the crying and pulling his knees to his tummy

caused the shoes to come off. He seems to know that trying to move

his feet independently can loosen the shoes and he could eventually

after a few days free his feet somewhat.

So the doctor saw us last week and himself instructed the orthodics

people to rebuild the heel and take off the shoe tongue in order to

secure his foot properly. I was quite concerned about whether the

shoes would ever fit and suggested putting Teddy back in casts for

another month until his feet are a bit bigger. However, that is when

the doctor assured me that there is always another option and briefly

mentioned (over my son's crying) that maybe some physiotherapy may be

an option (perhaps in all the confusion and excitement we

misinterpreted his suggestion).

Since we have our follow-up appointment this week, I thought I would

do some research so I would be better prepared, that is when I came

across your group. I was reading through several comments and

realized that we are not alone in the " shoe problem " area and were

hoping that someone like yourself may offer some suggestions etc.

since there seems to be a lot of helpful advice from " veteran "

parents like yourself.

We appreciate your concern and comments and will be sure to let you

know the outcome of our appointment tomorrow.

Thanks again,

Carly

> > Dear Group,

> >

> > My wife and I have been experiencing similar problems with

our

> > son's shoes. He is 3 months old, and has been out of his casts

> and

> > already on his second pair of shoes since August 11th (having

been

> > switched from the Markel TM-1644 to the open heel TM-1645 style).

> >

> > We have been to the orthodics specialists 4 times for

> adjustments

> > to no avail with our son continuing to pull his feet out or raise

> his

> > heels up.

> >

> > In our last visit with the Doctor- who also could not get the

> shoes

> > to stay on properly - a suggestion of some sort of physiotherapy

> was

> > mentioned as an alternative method if the shoes continued to be a

> > problem.

> >

> > Has anyone heard of (or tried) anything like this?

> > What would it entail? Or is this simply not a viable option?

> >

> > Any help or info would be greatly appreciated.

> >

> > Respectfully,

> >

> > Glen and Carly

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Carly,

Please let us know how Teddy's appt. went!!

I do hope that your doctor is applying the method correctly. Many

of us here are going to question the doctor right away- if we aren't

given the doctor's name right off the bat. This is because for

years we have been reading posts like yours where the doctor claims

to have been trained and has an excellent reputation.....only to

find out that they're modifying the method and getting less than

desirable results. In fact, we have come to find out that even some

of the docs listed on Dr. P's qualified physicians list are not even

following the method correctly. Our goal here is not only to

support families, but to give them the resources and tools to

understand what is and what is not expected protocol so they can

make decisions on their child's behalf with peace of mind and

confidence. Too many of us (myself included) have been " burned " by

blindly trusting doctors....so our cynacism is difficult to put

aside at times! :)

Have you seen the FAB tips and tricks document yet?

This site might help you also:

http://members.tripod.com/ponseti_links-ivil

Regards,

& (3-16-00, left cf)

http://ponseticlubfoot.freeservers.com

> > > Dear Group,

> > >

> > > My wife and I have been experiencing similar problems

with

> our

> > > son's shoes. He is 3 months old, and has been out of his

casts

> > and

> > > already on his second pair of shoes since August 11th (having

> been

> > > switched from the Markel TM-1644 to the open heel TM-1645

style).

> > >

> > > We have been to the orthodics specialists 4 times for

> > adjustments

> > > to no avail with our son continuing to pull his feet out or

raise

> > his

> > > heels up.

> > >

> > > In our last visit with the Doctor- who also could not get

the

> > shoes

> > > to stay on properly - a suggestion of some sort of

physiotherapy

> > was

> > > mentioned as an alternative method if the shoes continued to

be a

> > > problem.

> > >

> > > Has anyone heard of (or tried) anything like this?

> > > What would it entail? Or is this simply not a viable option?

> > >

> > > Any help or info would be greatly appreciated.

> > >

> > > Respectfully,

> > >

> > > Glen and Carly

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Carly,

Please let us know how Teddy's appt. went!!

I do hope that your doctor is applying the method correctly. Many

of us here are going to question the doctor right away- if we aren't

given the doctor's name right off the bat. This is because for

years we have been reading posts like yours where the doctor claims

to have been trained and has an excellent reputation.....only to

find out that they're modifying the method and getting less than

desirable results. In fact, we have come to find out that even some

of the docs listed on Dr. P's qualified physicians list are not even

following the method correctly. Our goal here is not only to

support families, but to give them the resources and tools to

understand what is and what is not expected protocol so they can

make decisions on their child's behalf with peace of mind and

confidence. Too many of us (myself included) have been " burned " by

blindly trusting doctors....so our cynacism is difficult to put

aside at times! :)

Have you seen the FAB tips and tricks document yet?

This site might help you also:

http://members.tripod.com/ponseti_links-ivil

Regards,

& (3-16-00, left cf)

http://ponseticlubfoot.freeservers.com

> > > Dear Group,

> > >

> > > My wife and I have been experiencing similar problems

with

> our

> > > son's shoes. He is 3 months old, and has been out of his

casts

> > and

> > > already on his second pair of shoes since August 11th (having

> been

> > > switched from the Markel TM-1644 to the open heel TM-1645

style).

> > >

> > > We have been to the orthodics specialists 4 times for

> > adjustments

> > > to no avail with our son continuing to pull his feet out or

raise

> > his

> > > heels up.

> > >

> > > In our last visit with the Doctor- who also could not get

the

> > shoes

> > > to stay on properly - a suggestion of some sort of

physiotherapy

> > was

> > > mentioned as an alternative method if the shoes continued to

be a

> > > problem.

> > >

> > > Has anyone heard of (or tried) anything like this?

> > > What would it entail? Or is this simply not a viable option?

> > >

> > > Any help or info would be greatly appreciated.

> > >

> > > Respectfully,

> > >

> > > Glen and Carly

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Dear Glen and Carly, with this much issue on the shoes, have you considered

using the shoe variety? I've used it with great success. Costs more to

start with it, but it's made all the difference for us.

s.

physiotherapy??

Dear Group,

My wife and I have been experiencing similar problems with our

son's shoes. He is 3 months old, and has been out of his casts and

already on his second pair of shoes since August 11th (having been

switched from the Markel TM-1644 to the open heel TM-1645 style).

We have been to the orthodics specialists 4 times for adjustments

to no avail with our son continuing to pull his feet out or raise his

heels up.

In our last visit with the Doctor- who also could not get the shoes

to stay on properly - a suggestion of some sort of physiotherapy was

mentioned as an alternative method if the shoes continued to be a

problem.

Has anyone heard of (or tried) anything like this?

What would it entail? Or is this simply not a viable option?

Any help or info would be greatly appreciated.

Respectfully,

Glen and Carly

Link to comment
Share on other sites

Dear Glen and Carly, with this much issue on the shoes, have you considered

using the shoe variety? I've used it with great success. Costs more to

start with it, but it's made all the difference for us.

s.

physiotherapy??

Dear Group,

My wife and I have been experiencing similar problems with our

son's shoes. He is 3 months old, and has been out of his casts and

already on his second pair of shoes since August 11th (having been

switched from the Markel TM-1644 to the open heel TM-1645 style).

We have been to the orthodics specialists 4 times for adjustments

to no avail with our son continuing to pull his feet out or raise his

heels up.

In our last visit with the Doctor- who also could not get the shoes

to stay on properly - a suggestion of some sort of physiotherapy was

mentioned as an alternative method if the shoes continued to be a

problem.

Has anyone heard of (or tried) anything like this?

What would it entail? Or is this simply not a viable option?

Any help or info would be greatly appreciated.

Respectfully,

Glen and Carly

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Share on other sites

Dear Group,

The appointment went well.

I apologize for not replying sooner. Thank you to all who were able

to respond to our post. Armed with all of the knowledge we went to

the appointment with the appropriate questions and concerns.

The practice is under Dr Noonan and Dr. Nemeth at the University of

Wisconsin Medical centre here in Madison. (Both of whom are

registered on Dr Ponseti's list of students) We apologize for not

mentioning them first. It is important to be concerned that you are

seeing the right Doctor, but as my wife and I discussed, (with them

already being on the list) unless we are somehow coming up with the

funds and freedom- as Canadian's on limited visa's to leave my job

and live in Iowa to have Dr. Ponseti himself tend to our child – we

have to trust in the care that he is getting here. Unfortunately the

reality of our situation forces us down a certain path. We are just

so lucky to be in the position that we are in now. If this were to

be dealt with in Canada – who knows where our son may have ended up

and how long care would have been postponed. (Based on our past

experiences with the Canadian medical system)

Dr Nemeth was excellent and modest in addressing our concerns

regarding how strict he was following the Ponseti method (which in

further detail we learned he has a tendency to follow it and ere on

the stricter side of adhering to it's design.)

Teddy's feet (as it turns out) show excellent sign of flexibility at

this stage of recovery from the tenotomy.

Our concern of his heel still moving in the shoe turned out to be not

as dramatic as we figured, and the small movement that he did have

was addressed with a some well placed padding under the strap to help

keep them down.

Even though we do not feel in this case that it is necessary (or

possible) to seek out (and even trust) a second opinion. We do

appreciate your cynicism in this matter, especially when founded from

past experiences (I myself have so commonly been burned when blindly

trusting in the good of my fellow man these days). Without your

opinions and advice, my wife and I would probably never have

questioned the Doctor, and learned as much as we did about this

process.

Thank you again for your help. My wife and I look forward to

conferring more in the future, and hopefully return the favour by

offering up the knowledge learned from our experiences with clubfoot

as well.

Respectfully,

Glen and Carly (Teddy's parents)

PS – We will send pics of our son's feet soon J

> >

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Share on other sites

Dear Group,

The appointment went well.

I apologize for not replying sooner. Thank you to all who were able

to respond to our post. Armed with all of the knowledge we went to

the appointment with the appropriate questions and concerns.

The practice is under Dr Noonan and Dr. Nemeth at the University of

Wisconsin Medical centre here in Madison. (Both of whom are

registered on Dr Ponseti's list of students) We apologize for not

mentioning them first. It is important to be concerned that you are

seeing the right Doctor, but as my wife and I discussed, (with them

already being on the list) unless we are somehow coming up with the

funds and freedom- as Canadian's on limited visa's to leave my job

and live in Iowa to have Dr. Ponseti himself tend to our child – we

have to trust in the care that he is getting here. Unfortunately the

reality of our situation forces us down a certain path. We are just

so lucky to be in the position that we are in now. If this were to

be dealt with in Canada – who knows where our son may have ended up

and how long care would have been postponed. (Based on our past

experiences with the Canadian medical system)

Dr Nemeth was excellent and modest in addressing our concerns

regarding how strict he was following the Ponseti method (which in

further detail we learned he has a tendency to follow it and ere on

the stricter side of adhering to it's design.)

Teddy's feet (as it turns out) show excellent sign of flexibility at

this stage of recovery from the tenotomy.

Our concern of his heel still moving in the shoe turned out to be not

as dramatic as we figured, and the small movement that he did have

was addressed with a some well placed padding under the strap to help

keep them down.

Even though we do not feel in this case that it is necessary (or

possible) to seek out (and even trust) a second opinion. We do

appreciate your cynicism in this matter, especially when founded from

past experiences (I myself have so commonly been burned when blindly

trusting in the good of my fellow man these days). Without your

opinions and advice, my wife and I would probably never have

questioned the Doctor, and learned as much as we did about this

process.

Thank you again for your help. My wife and I look forward to

conferring more in the future, and hopefully return the favour by

offering up the knowledge learned from our experiences with clubfoot

as well.

Respectfully,

Glen and Carly (Teddy's parents)

PS – We will send pics of our son's feet soon J

> >

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