RE: Re: - Extended FAB wear

[Guest guest]

,

Yes, I remember Dr Ponseti telling us that the condition that caused the

clubfoot in the first place stays active for quite a while, which was

the reason for using the FAB. I also read some statistics a while ago

that almost 50% of surgery requires repeat surgery. I was just

wondering why the doctors who still do surgery tell us one operation and

it's fixed for good, like it's a 'quick-fix' situation, when it is

absolutely not true. It seems crazy to me that after all the cutting

and pinning that the PMR involves, the foot can still relapse - and they

don't tell you this at the consultation. The FAB wear is cited by these

doctors as a disadvantage, like it's too much effort for parents. But

in fact in most cases, the complications after surgery are far worse and

they have to wear shoes anyway. And then there's the immobility and

arthritis that occurs in later years. My cynical take on this is that

it is actually only a quick-fix for these doctors, they don't have to

live with the results! Of course you know this all already, but I'm

pretty upset now because I have heard that one of our hospitals here

doesn't want to introduce the Ponseti method for this reason. They say

that the mothers won't keep up the FAB wear! I'm sure that this

situation will change once the mothers (and fathers) know their options.

and

www.clubfoot.co.za

Re: Thanks so much-one more question

>

> Antoinette,

> When I took my daughter to Iowa for her check up in early March,

Dr.

> Ponseti and Dr. Morcuende told me that they have been seeing a

number

> of older children have sudden and severe regression. I'll try to

> relay what I overheard- but keep in mind that I'm just a parent. I

> don't think this is a new phenomenon, it's just that parents are

> doing a better job of taking their children in for follow up

> appointments and staying in touch with the doctors more closely, so

> the doctors are able to piece together more information since they

> have more patients and more thorough records for each patient. It

> seems that the working theory is that some children have relapses

> between the ages of 3-5 due to a sudden growth spurt where the

> muscles/ligaments cannot keep up with the bone growth. For

example,

> a child's clubfoot was completely corrected and the child stopped

> wearing the brace at age 3, but shortly thereafter the child

> experienced a quick regression and needed the ATTT procedure by age

> 4. Dr. Morcuende said that the severity of the deformity at birth

> does not appear to be related to the onset of regression at an

older

> age. I'm guessing that Tina's latest post about Kavan regressing

is

> another example of this situation where a sudden growth spurt

causes

> the foot to relapse.

> Try to keep in mind that if the brace is worn as prescribed, the

> chance of relapse is 7% or less, but over 70% if it is not worn

> diligently.

>

> I think most relapses happen before age 3 and are related to the

> child not wearing the brace as prescribed. It makes sense in my

> mind, that the child is growing very quickly between the ages of 1

> and 3, so that's why the brace is important, to maintain the proper

> position of the feet as the legs are growing and changing...much

like

> the occasional growth spurts in the older children- a child under 3

> is in a nearly " constant growth spurt " , making the brace wear that

> much more important.

> It will be interesting to see if the protocol for brace wear in

older

> children will change in the near future as the doctors gather more

> information about the causes and prevention of regression.

> Please remember the comments are just my take on what I heard the

> doctors talking about.

> Regards,

> & (3-16-00)

> left clubfoot, switched to Ponseti method at 4 months old

[Guest guest]

,

Yes, I remember Dr Ponseti telling us that the condition that caused the

clubfoot in the first place stays active for quite a while, which was

the reason for using the FAB. I also read some statistics a while ago

that almost 50% of surgery requires repeat surgery. I was just

wondering why the doctors who still do surgery tell us one operation and

it's fixed for good, like it's a 'quick-fix' situation, when it is

absolutely not true. It seems crazy to me that after all the cutting

and pinning that the PMR involves, the foot can still relapse - and they

don't tell you this at the consultation. The FAB wear is cited by these

doctors as a disadvantage, like it's too much effort for parents. But

in fact in most cases, the complications after surgery are far worse and

they have to wear shoes anyway. And then there's the immobility and

arthritis that occurs in later years. My cynical take on this is that

it is actually only a quick-fix for these doctors, they don't have to

live with the results! Of course you know this all already, but I'm

pretty upset now because I have heard that one of our hospitals here

doesn't want to introduce the Ponseti method for this reason. They say

that the mothers won't keep up the FAB wear! I'm sure that this

situation will change once the mothers (and fathers) know their options.

and

www.clubfoot.co.za

Re: Thanks so much-one more question

>

> Antoinette,

> When I took my daughter to Iowa for her check up in early March,

Dr.

> Ponseti and Dr. Morcuende told me that they have been seeing a

number

> of older children have sudden and severe regression. I'll try to

> relay what I overheard- but keep in mind that I'm just a parent. I

> don't think this is a new phenomenon, it's just that parents are

> doing a better job of taking their children in for follow up

> appointments and staying in touch with the doctors more closely, so

> the doctors are able to piece together more information since they

> have more patients and more thorough records for each patient. It

> seems that the working theory is that some children have relapses

> between the ages of 3-5 due to a sudden growth spurt where the

> muscles/ligaments cannot keep up with the bone growth. For

example,

> a child's clubfoot was completely corrected and the child stopped

> wearing the brace at age 3, but shortly thereafter the child

> experienced a quick regression and needed the ATTT procedure by age

> 4. Dr. Morcuende said that the severity of the deformity at birth

> does not appear to be related to the onset of regression at an

older

> age. I'm guessing that Tina's latest post about Kavan regressing

is

> another example of this situation where a sudden growth spurt

causes

> the foot to relapse.

> Try to keep in mind that if the brace is worn as prescribed, the

> chance of relapse is 7% or less, but over 70% if it is not worn

> diligently.

>

> I think most relapses happen before age 3 and are related to the

> child not wearing the brace as prescribed. It makes sense in my

> mind, that the child is growing very quickly between the ages of 1

> and 3, so that's why the brace is important, to maintain the proper

> position of the feet as the legs are growing and changing...much

like

> the occasional growth spurts in the older children- a child under 3

> is in a nearly " constant growth spurt " , making the brace wear that

> much more important.

> It will be interesting to see if the protocol for brace wear in

older

> children will change in the near future as the doctors gather more

> information about the causes and prevention of regression.

> Please remember the comments are just my take on what I heard the

> doctors talking about.

> Regards,

> & (3-16-00)

> left clubfoot, switched to Ponseti method at 4 months old

[Guest guest]

Hi Idit,

That's great to hear that you are getting the word out in Israel, well

done! I get a similar response when parents are informed about the

Ponseti method. Quite a few that I have been in contact with have

switched to a Ponseti doctor. They all want their kids to avoid surgery

- obviously! These doctors need to give parents more credit - and more

choices.

Today I took to the paediatrician and I popped into the maternity

ward where he was born. It's 14 months later but some of the nurses

remembered us and his feet. They were so excited to see how good they

look and they took the South African website details so they can pass

the word on to parents of babies born there with clubfoot!

and

(24th Jan 2003, bilateral)

www.clubfoot.co.za

Re: Thanks so much-one more

question

> >

> > Antoinette,

> > When I took my daughter to Iowa for her check up in early March,

> Dr.

> > Ponseti and Dr. Morcuende told me that they have been seeing a

> number

> > of older children have sudden and severe regression. I'll try

to

> > relay what I overheard- but keep in mind that I'm just a parent.

I

> > don't think this is a new phenomenon, it's just that parents are

> > doing a better job of taking their children in for follow up

> > appointments and staying in touch with the doctors more closely,

so

> > the doctors are able to piece together more information since

they

> > have more patients and more thorough records for each patient.

It

> > seems that the working theory is that some children have

relapses

> > between the ages of 3-5 due to a sudden growth spurt where the

> > muscles/ligaments cannot keep up with the bone growth. For

> example,

> > a child's clubfoot was completely corrected and the child

stopped

> > wearing the brace at age 3, but shortly thereafter the child

> > experienced a quick regression and needed the ATTT procedure by

age

> > 4. Dr. Morcuende said that the severity of the deformity at

birth

> > does not appear to be related to the onset of regression at an

> older

> > age. I'm guessing that Tina's latest post about Kavan

regressing

> is

> > another example of this situation where a sudden growth spurt

> causes

> > the foot to relapse.

> > Try to keep in mind that if the brace is worn as prescribed, the

> > chance of relapse is 7% or less, but over 70% if it is not worn

> > diligently.

> >

> > I think most relapses happen before age 3 and are related to the

> > child not wearing the brace as prescribed. It makes sense in my

> > mind, that the child is growing very quickly between the ages of

1

> > and 3, so that's why the brace is important, to maintain the

proper

> > position of the feet as the legs are growing and changing...much

> like

> > the occasional growth spurts in the older children- a child

under 3

> > is in a nearly " constant growth spurt " , making the brace wear

that

> > much more important.

> > It will be interesting to see if the protocol for brace wear in

> older

> > children will change in the near future as the doctors gather

more

> > information about the causes and prevention of regression.

> > Please remember the comments are just my take on what I heard

the

> > doctors talking about.

> > Regards,

> > & (3-16-00)

> > left clubfoot, switched to Ponseti method at 4 months old

>

>

>

>

[Guest guest]

Daiga,

I agree that it's changing, and each new Ponseti patient anywhere in the

world is one more baby avoiding unnecessary surgery.

Sometimes I get impatient with the progress here, although it's moving

along pretty well compared to a year ago. There's still a long way to

go in getting the Ponseti method to be the accepted standard of

treatment by the majority of doctors, but there's a handful of dedicated

people here now and the word is getting out there!

and

24th Jan 2003, bilateral

www.clubfoot.co.za

Re: Thanks so much-one more question

> >

> > Antoinette,

> > When I took my daughter to Iowa for her check up in early March,

> Dr.

> > Ponseti and Dr. Morcuende told me that they have been seeing a

> number

> > of older children have sudden and severe regression. I'll try to

> > relay what I overheard- but keep in mind that I'm just a parent.

I

> > don't think this is a new phenomenon, it's just that parents are

> > doing a better job of taking their children in for follow up

> > appointments and staying in touch with the doctors more closely,

so

> > the doctors are able to piece together more information since

they

> > have more patients and more thorough records for each patient.

It

> > seems that the working theory is that some children have relapses

> > between the ages of 3-5 due to a sudden growth spurt where the

> > muscles/ligaments cannot keep up with the bone growth. For

> example,

> > a child's clubfoot was completely corrected and the child stopped

> > wearing the brace at age 3, but shortly thereafter the child

> > experienced a quick regression and needed the ATTT procedure by

age

> > 4. Dr. Morcuende said that the severity of the deformity at

birth

> > does not appear to be related to the onset of regression at an

> older

> > age. I'm guessing that Tina's latest post about Kavan regressing

> is

> > another example of this situation where a sudden growth spurt

> causes

> > the foot to relapse.

> > Try to keep in mind that if the brace is worn as prescribed, the

> > chance of relapse is 7% or less, but over 70% if it is not worn

> > diligently.

> >

> > I think most relapses happen before age 3 and are related to the

> > child not wearing the brace as prescribed. It makes sense in my

> > mind, that the child is growing very quickly between the ages of

1

> > and 3, so that's why the brace is important, to maintain the

proper

> > position of the feet as the legs are growing and changing...much

> like

> > the occasional growth spurts in the older children- a child under

3

> > is in a nearly " constant growth spurt " , making the brace wear

that

> > much more important.

> > It will be interesting to see if the protocol for brace wear in

> older

> > children will change in the near future as the doctors gather

more

> > information about the causes and prevention of regression.

> > Please remember the comments are just my take on what I heard the

> > doctors talking about.

> > Regards,

> > & (3-16-00)

> > left clubfoot, switched to Ponseti method at 4 months old

>

>

>

>