Re: - AFO Discussion

[Guest guest]

,

I am sorry that you are having problems with the FAB/DBB, but I agree

with what has said about AFO's.

Dr. Ponseti does not use AFO's or KAFO's in his method. He feels

that since they don't maintain the external rotation of the foot

that they allow the foot to relapse easier. Dr. Ponseti is now 90

years old. He retired in his early 70's in the early 1980's when the

U of Iowa had a manditory retirement age. While he was " retired " ,

the U of Iowa tried using AFO's and found that they didn't work as

well in preventing relapsing and so went back to the FAB/DBB.

Eventually, the manditory retirement age was removed and he was able

to return to the U of Iowa.

Since returning to work, Dr. Ponseti has emphasized his treatment for

clubfoot. On June 13, 2003 — The American Orthopaedic Association

(AOA) and Zimmer, Inc. awarded Ignacio V. Ponseti, MD, the Second

Annual AOA-Zimmer Award for Distinguished Contributions to

Orthopaedics at the 116th Annual AOA Meeting

http://www.zimmer.com/ctl?op=global&action=1&template=CP&id=2785

Wheaton Braces are a type of KAFO or (knee-ankle-foot-orthotic).

They are mentioned in the Global HELP publication on the Ponseti

method that was coauthored by Dr. Ponseti. In the recent Global HELP

Publication on the Ponseti method it says on page 15,

" Importance of bracing "

" The Ponseti manipulations combined with the percutaneous

tenotomy regularly achieve an excellent result. However,

without a diligent follow-up bracing program,recurrence and

relapse occur in more than 80% of cases. This is in contrast to

a relapse rate of only 6%in compliant families (Morcuende et

al.). "

" Alternatives to foot abduction brace "

" Some surgeons have tried to " improve " Ponseti management

by modifying the brace protocol or by using different braces.

They think that the child will be more comfortable without the

bar and so advise use of straight last shoes alone. This strategy

always fails. The straight last shoes by themselves do nothing.

They function only as an attachment point for the bar. "

" Some braces are no better than the shoes by themselves

and, therefore, have no place in the bracing protocol. If well

fitted, the knee-ankle-foot braces (KAFO's), such as the Wheaton

brace, maintain the foot abducted and externally rotated. However,

the knee-ankle-foot braces keep the knee bent in 90 degrees

of flexion. This position causes the gastrocnemius muscle and

Achilles tendon to atrophy and shorten, leading to recurrence of

the equinus deformity. This is particularly a problem if a knee-

ankle-foot brace is used during the initial 3 months of bracing,

when the braces are worn full time. "

" In summary, only the brace as described by Ponseti is an

acceptable brace for Ponseti management and should be worn

at night until the child is 3 to 4 years of age. "

http://www.global-help.org/publications/pdfs/PonsetiBook.pdf

A link to the Wheaton Brace web site can be seen at

http://www.wheatonbrace.com/products/wbsys.html

and (3-17-99)

> > Hello,

> >

> > I am new to the group. I have a 9 month old with bi-lateral club

> > foot. The right one rated 16 the left at 19. We have had a

horrible

> > time with this process. In fact, I spent the whole afternoon

today

> > trying to get shoes that would fit him. Only to be sent home from

> the

> > brace company with plates on the wrong shoes, shoes on the wrong

> > feet, and a different angle set on each shoe.

> >

> > My problem right now is the red tender markings on my son's feet.

> > The

> > marks are blood red and make several crosses on the tops of his

> feet.

> > Right now his right foot is so tender that touch sends him into

> > tears. The brace company insisted I put the size 000 shoes on the

> 6th

> > hole for my 9 month old 17 lb son. I think this was too tight.

> Today

> > I insisted on a new pair of shoes (size 0). I haven't tried them

> > since my husband had to unassembled and reassemble them. I think

we

> > will wait a day or two since Matt's feet are so tender. Does

> > anyone

> > have experience with these types of sores?

> >

> > Thanks!

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

... Thank u for that wonderful letter. I know that many of you have felt

like me at one point. You just want your child to be comfortable.... feel

normal... and most importantly have their club feet fixed. I know we will end up

coming home from our next appt. when the casts come off with the DBB and the

AFO. I would like to try them both just to see for myself. I am sure in the long

run we will end up with the DBB. But I agree.. some of it might be for selfish

reasons that I wanted the AFO's. I wanna be able to hold him in any position and

be able to cuddle with him... with that stupid bar it is so difficult to do

that. But I know in the long run, I have to do what will be right for , not

me. Thank u everyone for your advice. You have made this difficult journey for

us a bit easier and I am now much more informed.

2/9/04 BLCF

P.S. Just a question... is still small enough to always be in his " car

seat " that comes with the stroller- -so there is no issue with fitting the DBB.

But when he sits in the regular part of his stroller... or a shopping cart...

how would he fit? Just curious.

MJZ28SS@... wrote:

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

... Thank u for that wonderful letter. I know that many of you have felt

like me at one point. You just want your child to be comfortable.... feel

normal... and most importantly have their club feet fixed. I know we will end up

coming home from our next appt. when the casts come off with the DBB and the

AFO. I would like to try them both just to see for myself. I am sure in the long

run we will end up with the DBB. But I agree.. some of it might be for selfish

reasons that I wanted the AFO's. I wanna be able to hold him in any position and

be able to cuddle with him... with that stupid bar it is so difficult to do

that. But I know in the long run, I have to do what will be right for , not

me. Thank u everyone for your advice. You have made this difficult journey for

us a bit easier and I am now much more informed.

2/9/04 BLCF

P.S. Just a question... is still small enough to always be in his " car

seat " that comes with the stroller- -so there is no issue with fitting the DBB.

But when he sits in the regular part of his stroller... or a shopping cart...

how would he fit? Just curious.

MJZ28SS@... wrote:

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

,

I can't tell you how happy I am that my daughter will have perfectly straight

feet and how privileged I feel that she has had such an easy time with the

shoes and has done so well when the prognosis for her feet was dismal

at best. But I also can't tell you the number of times I've said " that dumb

bar " . LOL However, it's really just become a part of us now. I don't even

make adjustment for it when holding and cuddling her. It just is. Does that

make sense? Due to her severity, she'll be wearing it initially a month or so

longer. But in the end, these four months of annoyance will be just a drop in

the bucket in her life and she's just as attached to me as ever. So hang in

there - it does get easier. Really.

Chris

Re: - AFO Discussion

... Thank u for that wonderful letter. I know that many of you have

felt like me at one point. You just want your child to be comfortable.... feel

normal... and most importantly have their club feet fixed. I know we will end up

coming home from our next appt. when the casts come off with the DBB and the

AFO. I would like to try them both just to see for myself. I am sure in the long

run we will end up with the DBB. But I agree.. some of it might be for selfish

reasons that I wanted the AFO's. I wanna be able to hold him in any position and

be able to cuddle with him... with that stupid bar it is so difficult to do

that. But I know in the long run, I have to do what will be right for , not

me. Thank u everyone for your advice. You have made this difficult journey for

us a bit easier and I am now much more informed.

2/9/04 BLCF

P.S. Just a question... is still small enough to always be in his " car

seat " that comes with the stroller- -so there is no issue with fitting the DBB.

But when he sits in the regular part of his stroller... or a shopping cart...

how would he fit? Just curious.

MJZ28SS@... wrote:

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even

though my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could,

the AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because

of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe

the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire

leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

,

I can't tell you how happy I am that my daughter will have perfectly straight

feet and how privileged I feel that she has had such an easy time with the

shoes and has done so well when the prognosis for her feet was dismal

at best. But I also can't tell you the number of times I've said " that dumb

bar " . LOL However, it's really just become a part of us now. I don't even

make adjustment for it when holding and cuddling her. It just is. Does that

make sense? Due to her severity, she'll be wearing it initially a month or so

longer. But in the end, these four months of annoyance will be just a drop in

the bucket in her life and she's just as attached to me as ever. So hang in

there - it does get easier. Really.

Chris

Re: - AFO Discussion

... Thank u for that wonderful letter. I know that many of you have

felt like me at one point. You just want your child to be comfortable.... feel

normal... and most importantly have their club feet fixed. I know we will end up

coming home from our next appt. when the casts come off with the DBB and the

AFO. I would like to try them both just to see for myself. I am sure in the long

run we will end up with the DBB. But I agree.. some of it might be for selfish

reasons that I wanted the AFO's. I wanna be able to hold him in any position and

be able to cuddle with him... with that stupid bar it is so difficult to do

that. But I know in the long run, I have to do what will be right for , not

me. Thank u everyone for your advice. You have made this difficult journey for

us a bit easier and I am now much more informed.

2/9/04 BLCF

P.S. Just a question... is still small enough to always be in his " car

seat " that comes with the stroller- -so there is no issue with fitting the DBB.

But when he sits in the regular part of his stroller... or a shopping cart...

how would he fit? Just curious.

MJZ28SS@... wrote:

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even

though my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could,

the AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because

of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe

the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire

leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

,

I can't tell you how happy I am that my daughter will have perfectly straight

feet and how privileged I feel that she has had such an easy time with the

shoes and has done so well when the prognosis for her feet was dismal

at best. But I also can't tell you the number of times I've said " that dumb

bar " . LOL However, it's really just become a part of us now. I don't even

make adjustment for it when holding and cuddling her. It just is. Does that

make sense? Due to her severity, she'll be wearing it initially a month or so

longer. But in the end, these four months of annoyance will be just a drop in

the bucket in her life and she's just as attached to me as ever. So hang in

there - it does get easier. Really.

Chris

Re: - AFO Discussion

... Thank u for that wonderful letter. I know that many of you have

felt like me at one point. You just want your child to be comfortable.... feel

normal... and most importantly have their club feet fixed. I know we will end up

coming home from our next appt. when the casts come off with the DBB and the

AFO. I would like to try them both just to see for myself. I am sure in the long

run we will end up with the DBB. But I agree.. some of it might be for selfish

reasons that I wanted the AFO's. I wanna be able to hold him in any position and

be able to cuddle with him... with that stupid bar it is so difficult to do

that. But I know in the long run, I have to do what will be right for , not

me. Thank u everyone for your advice. You have made this difficult journey for

us a bit easier and I am now much more informed.

2/9/04 BLCF

P.S. Just a question... is still small enough to always be in his " car

seat " that comes with the stroller- -so there is no issue with fitting the DBB.

But when he sits in the regular part of his stroller... or a shopping cart...

how would he fit? Just curious.

MJZ28SS@... wrote:

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even

though my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could,

the AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because

of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe

the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire

leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

> P.S. Just a question... is still small enough to always be in

his " car seat " that comes with the stroller- -so there is no issue

with fitting the DBB. But when he sits in the regular part of his

stroller... or a shopping cart... how would he fit? Just curious.

,

I, too, thought 's note was wonderful. Very expressive..

nicely done.

Just popping in to help with your P.S.

My child was 'older' when she had the DBB on full time, so I know the

issue you are wondering about, with shopping carts, etc.

Often I would take the infant carseat along for use in the store,

even when she was old enough to sit up in the front part of the cart.

Sometimes I'd take her in her own stroller, and just use it as

my 'shopping cart.'

You can get high chairs and strollers that have swing-open or

detachable leg spaces, if you know what I mean.. so the bar will work

in them. One of our strollers had a velcro-attached piece of fabric

between the legs that I could peel down, slip in the bar, and then

reattach.

The main thing, though, keep in mind...

Full time wear is ONLY for 3 months. So all these concerns are just

for a short time. After that, you'll only be using the bar at home,

and it won't be an issue, except perhaps for the high chair. Just be

sure to have the kind you can 'drop' the baby down into, that has

open leg spaces at the top when the tray is pulled away.

I think parents have an instinctive 'oh, no' reaction to the sight of

the DBB (FAB). It 'looks' tortuous and awkward and uncomfortable, but

actually it's just a pair of shoes, which get broken in just like any

of your own shoes.. and the baby gets used to the sensation of the

feet being attached. As far as holding and cuddling and everything

else with the bar there.. believe me, you do get used to it.. it

becomes as much a part of your baby as everything else.

Of course all things being equal, all of us would rather not have to

deal with it, but the way I view it, things are 'not' equal.. our

baby was born with this condition, and there is a consequence, for

lack of a better word.. Sure the routine is not the 'ideal', but

there are adjustments, devices and procedures that could be a lot

worse, and it's for a short time, in the big picture.

My daughter got quickly used to the bar; actually it helped her to

roll over, sit up (like a tripod), and even to crawl. When she would

crawl without it, she would sway and wobble and even fall sideways,

because it gave her a counterweight, and balance. She pulled to a

stand right on time, wearing the brace. I think it will surprise you

how easily and you will adjust.

I hope this helped.. hang in there and come here for help if you need

it!

and Claire, age 4

[Guest guest]

> P.S. Just a question... is still small enough to always be in

his " car seat " that comes with the stroller- -so there is no issue

with fitting the DBB. But when he sits in the regular part of his

stroller... or a shopping cart... how would he fit? Just curious.

,

I, too, thought 's note was wonderful. Very expressive..

nicely done.

Just popping in to help with your P.S.

My child was 'older' when she had the DBB on full time, so I know the

issue you are wondering about, with shopping carts, etc.

Often I would take the infant carseat along for use in the store,

even when she was old enough to sit up in the front part of the cart.

Sometimes I'd take her in her own stroller, and just use it as

my 'shopping cart.'

You can get high chairs and strollers that have swing-open or

detachable leg spaces, if you know what I mean.. so the bar will work

in them. One of our strollers had a velcro-attached piece of fabric

between the legs that I could peel down, slip in the bar, and then

reattach.

The main thing, though, keep in mind...

Full time wear is ONLY for 3 months. So all these concerns are just

for a short time. After that, you'll only be using the bar at home,

and it won't be an issue, except perhaps for the high chair. Just be

sure to have the kind you can 'drop' the baby down into, that has

open leg spaces at the top when the tray is pulled away.

I think parents have an instinctive 'oh, no' reaction to the sight of

the DBB (FAB). It 'looks' tortuous and awkward and uncomfortable, but

actually it's just a pair of shoes, which get broken in just like any

of your own shoes.. and the baby gets used to the sensation of the

feet being attached. As far as holding and cuddling and everything

else with the bar there.. believe me, you do get used to it.. it

becomes as much a part of your baby as everything else.

Of course all things being equal, all of us would rather not have to

deal with it, but the way I view it, things are 'not' equal.. our

baby was born with this condition, and there is a consequence, for

lack of a better word.. Sure the routine is not the 'ideal', but

there are adjustments, devices and procedures that could be a lot

worse, and it's for a short time, in the big picture.

My daughter got quickly used to the bar; actually it helped her to

roll over, sit up (like a tripod), and even to crawl. When she would

crawl without it, she would sway and wobble and even fall sideways,

because it gave her a counterweight, and balance. She pulled to a

stand right on time, wearing the brace. I think it will surprise you

how easily and you will adjust.

I hope this helped.. hang in there and come here for help if you need

it!

and Claire, age 4

[Guest guest]

> P.S. Just a question... is still small enough to always be in

his " car seat " that comes with the stroller- -so there is no issue

with fitting the DBB. But when he sits in the regular part of his

stroller... or a shopping cart... how would he fit? Just curious.

,

I, too, thought 's note was wonderful. Very expressive..

nicely done.

Just popping in to help with your P.S.

My child was 'older' when she had the DBB on full time, so I know the

issue you are wondering about, with shopping carts, etc.

Often I would take the infant carseat along for use in the store,

even when she was old enough to sit up in the front part of the cart.

Sometimes I'd take her in her own stroller, and just use it as

my 'shopping cart.'

You can get high chairs and strollers that have swing-open or

detachable leg spaces, if you know what I mean.. so the bar will work

in them. One of our strollers had a velcro-attached piece of fabric

between the legs that I could peel down, slip in the bar, and then

reattach.

The main thing, though, keep in mind...

Full time wear is ONLY for 3 months. So all these concerns are just

for a short time. After that, you'll only be using the bar at home,

and it won't be an issue, except perhaps for the high chair. Just be

sure to have the kind you can 'drop' the baby down into, that has

open leg spaces at the top when the tray is pulled away.

I think parents have an instinctive 'oh, no' reaction to the sight of

the DBB (FAB). It 'looks' tortuous and awkward and uncomfortable, but

actually it's just a pair of shoes, which get broken in just like any

of your own shoes.. and the baby gets used to the sensation of the

feet being attached. As far as holding and cuddling and everything

else with the bar there.. believe me, you do get used to it.. it

becomes as much a part of your baby as everything else.

Of course all things being equal, all of us would rather not have to

deal with it, but the way I view it, things are 'not' equal.. our

baby was born with this condition, and there is a consequence, for

lack of a better word.. Sure the routine is not the 'ideal', but

there are adjustments, devices and procedures that could be a lot

worse, and it's for a short time, in the big picture.

My daughter got quickly used to the bar; actually it helped her to

roll over, sit up (like a tripod), and even to crawl. When she would

crawl without it, she would sway and wobble and even fall sideways,

because it gave her a counterweight, and balance. She pulled to a

stand right on time, wearing the brace. I think it will surprise you

how easily and you will adjust.

I hope this helped.. hang in there and come here for help if you need

it!

and Claire, age 4

[Guest guest]

,

By the time you get to sitting in the shopping cart or stroller, he should be in

reduced hours. Remember that the 23/7 is only for 3 months. That may seem like

a long time now, but when you look back you will see how short a time it really

was. Believe it or not, 18 hours (the next step down for most) is a BIG

difference. Then it goes down and down until you are only putting it on at

sleep times and it absolutely doesnt interfere with any part of life (it can

make co-sleeping a little challenging, but you can even do that with comfort

once you are used to it!).

Angel

Re: - AFO Discussion

... Thank u for that wonderful letter. I know that many of you have felt

like me at one point. You just want your child to be comfortable.... feel

normal... and most importantly have their club feet fixed. I know we will end up

coming home from our next appt. when the casts come off with the DBB and the

AFO. I would like to try them both just to see for myself. I am sure in the long

run we will end up with the DBB. But I agree.. some of it might be for selfish

reasons that I wanted the AFO's. I wanna be able to hold him in any position and

be able to cuddle with him... with that stupid bar it is so difficult to do

that. But I know in the long run, I have to do what will be right for , not

me. Thank u everyone for your advice. You have made this difficult journey for

us a bit easier and I am now much more informed.

2/9/04 BLCF

P.S. Just a question... is still small enough to always be in his " car

seat " that comes with the stroller- -so there is no issue with fitting the DBB.

But when he sits in the regular part of his stroller... or a shopping cart...

how would he fit? Just curious.

MJZ28SS@... wrote:

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

,

By the time you get to sitting in the shopping cart or stroller, he should be in

reduced hours. Remember that the 23/7 is only for 3 months. That may seem like

a long time now, but when you look back you will see how short a time it really

was. Believe it or not, 18 hours (the next step down for most) is a BIG

difference. Then it goes down and down until you are only putting it on at

sleep times and it absolutely doesnt interfere with any part of life (it can

make co-sleeping a little challenging, but you can even do that with comfort

once you are used to it!).

Angel

Re: - AFO Discussion

... Thank u for that wonderful letter. I know that many of you have felt

like me at one point. You just want your child to be comfortable.... feel

normal... and most importantly have their club feet fixed. I know we will end up

coming home from our next appt. when the casts come off with the DBB and the

AFO. I would like to try them both just to see for myself. I am sure in the long

run we will end up with the DBB. But I agree.. some of it might be for selfish

reasons that I wanted the AFO's. I wanna be able to hold him in any position and

be able to cuddle with him... with that stupid bar it is so difficult to do

that. But I know in the long run, I have to do what will be right for , not

me. Thank u everyone for your advice. You have made this difficult journey for

us a bit easier and I am now much more informed.

2/9/04 BLCF

P.S. Just a question... is still small enough to always be in his " car

seat " that comes with the stroller- -so there is no issue with fitting the DBB.

But when he sits in the regular part of his stroller... or a shopping cart...

how would he fit? Just curious.

MJZ28SS@... wrote:

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

,

By the time you get to sitting in the shopping cart or stroller, he should be in

reduced hours. Remember that the 23/7 is only for 3 months. That may seem like

a long time now, but when you look back you will see how short a time it really

was. Believe it or not, 18 hours (the next step down for most) is a BIG

difference. Then it goes down and down until you are only putting it on at

sleep times and it absolutely doesnt interfere with any part of life (it can

make co-sleeping a little challenging, but you can even do that with comfort

once you are used to it!).

Angel

Re: - AFO Discussion

... Thank u for that wonderful letter. I know that many of you have felt

like me at one point. You just want your child to be comfortable.... feel

normal... and most importantly have their club feet fixed. I know we will end up

coming home from our next appt. when the casts come off with the DBB and the

AFO. I would like to try them both just to see for myself. I am sure in the long

run we will end up with the DBB. But I agree.. some of it might be for selfish

reasons that I wanted the AFO's. I wanna be able to hold him in any position and

be able to cuddle with him... with that stupid bar it is so difficult to do

that. But I know in the long run, I have to do what will be right for , not

me. Thank u everyone for your advice. You have made this difficult journey for

us a bit easier and I am now much more informed.

2/9/04 BLCF

P.S. Just a question... is still small enough to always be in his " car

seat " that comes with the stroller- -so there is no issue with fitting the DBB.

But when he sits in the regular part of his stroller... or a shopping cart...

how would he fit? Just curious.

MJZ28SS@... wrote:

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

Babies generally fit in their car seats wearing the bar just fine. As for

grocery carts, he can sit in the basket area instead of in the child-seat area

when he's wearing the bar. If he's old enough to sit up, he's probably able to

sit up in the cart, kwim? And as for just generally holding your baby during

the day - after a little while the bar just become a natural extension of his

body and you don't notice it - in fact, it almost feels weird to hold them with

out it! My baby is at the 16 - 18 hour a day range right now. I try to plan

our out door chores during those hours so he can get down on the ground in the

mud and the muck with me as I do my landscaping. I went the AFO rout with my

first cf baby and the results were awful.

s.

Re: - AFO Discussion

... Thank u for that wonderful letter. I know that many of you have felt

like me at one point. You just want your child to be comfortable.... feel

normal... and most importantly have their club feet fixed. I know we will end up

coming home from our next appt. when the casts come off with the DBB and the

AFO. I would like to try them both just to see for myself. I am sure in the long

run we will end up with the DBB. But I agree.. some of it might be for selfish

reasons that I wanted the AFO's. I wanna be able to hold him in any position and

be able to cuddle with him... with that stupid bar it is so difficult to do

that. But I know in the long run, I have to do what will be right for , not

me. Thank u everyone for your advice. You have made this difficult journey for

us a bit easier and I am now much more informed.

2/9/04 BLCF

P.S. Just a question... is still small enough to always be in his " car

seat " that comes with the stroller- -so there is no issue with fitting the DBB.

But when he sits in the regular part of his stroller... or a shopping cart...

how would he fit? Just curious.

MJZ28SS@... wrote:

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

's shoes are like an AFO on a bar....a nice compromise.

s.

Re: - AFO Discussion

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

The bar really isn't as hard to " cuddle " around as you might be imagining it to

be. Keep in mind the long term goal - an adult with comfortable pain free feet,

not a convienient for mommy treatment today.

In a couple days it'll seem totally normal to you - even breast feeding, etc.

I even figured out how to carry him in a sling wearing the bar, and those Hip

Hammocks (look on line for one!) are wonderful once the child is big enough to

sit up.

s.

Re: - AFO Discussion

... Thank u for that wonderful letter. I know that many of you have felt

like me at one point. You just want your child to be comfortable.... feel

normal... and most importantly have their club feet fixed. I know we will end up

coming home from our next appt. when the casts come off with the DBB and the

AFO. I would like to try them both just to see for myself. I am sure in the long

run we will end up with the DBB. But I agree.. some of it might be for selfish

reasons that I wanted the AFO's. I wanna be able to hold him in any position and

be able to cuddle with him... with that stupid bar it is so difficult to do

that. But I know in the long run, I have to do what will be right for , not

me. Thank u everyone for your advice. You have made this difficult journey for

us a bit easier and I am now much more informed.

2/9/04 BLCF

P.S. Just a question... is still small enough to always be in his " car

seat " that comes with the stroller- -so there is no issue with fitting the DBB.

But when he sits in the regular part of his stroller... or a shopping cart...

how would he fit? Just curious.

MJZ28SS@... wrote:

Hi ,

I can totally relate to why you want to try the AFO. I tried it...for 30

minutes. I hated the DBB. My daughter had horrible sores from it, not to

mention how awkward it was when it came time to dress her or hold her or nurse

her.

When the doctor told me that an AFO was just as good as a DBB I was all for

it. I was even told that the AFO would hold the external rotation that is so

very important in preventing relapses. It doesn't, it can't and it won't. If

you are educated about clubfoot treatment and want the best treatment and the

smallest risk of relapse, which I believe you do, then you are bound to be

disappointed by the AFO. (although it sounds like a dream)

If you are like me though, you will hold on to the idea that there is

something better than the DBB and you will have to try the AFO to see for

yourself. No one can talk you out of it or fault you for wanting something

better,

but I assure you that an AFO is not the answer.

I really wanted an AFO to work. I really believed my doctor (afterall

he is the doctor right?) I really tried to convince myself that everyone else

was wrong and it would be better for me even when everyone else told me

otherwise. And that was part of the problem, I was thinking of me. Even though

my

daughter had sores from the DBB, I was really holding on to what I wanted and

not what she needed. I wanted a small little brace that was comfortable and

did not involver her 'good' foot and easy to maneuver her with and hold her

without awkwardness. She was comfortable in the DBB, she was used to it after

the

first days...I wasn't. I was just looking for a reason, any reason to give

it up for something easier/better, the sores were just the perfect excuse. As

soon as I saw the AFO, I knew that I could not lie to myself and risk my

daughter's well-being anymore. As much as I wanted to pretend like it could, the

AFO

could not hold the near the same level of correction as the DBB that I loathe

SO much. Actually, I have a love/hate relationship with the DBB... I love the

pain it will spare Kaitlin in the long run but I hate the pain it causes now.

There is a reason why doctors all over the world use the DBB and not the AFO

for clubfoot and I assure you it is not out of meanness or to torment us

parents.

After a lot of research and input from other members of the group I

realized that although our doctor claimed to follow the Ponseti Method, he

didn't. Any Ponseti doctor would not recommend an AFO as the sole source of

bracing

for clubfoot. Some doctors claim to try the Method, but do not

whole-heartedly believe that clubfoot cannot be treated without surgery as the

end result.

Those doctors don't mind surgery. It is not their foot that will be painful

and stiff from scarring later in life. It is not their child that will have to

undergo unneeded surgery. We had one of those apathetic doctors and because of

that he was quick to sway from the Method and persuade me to listen to him.

We have recently changed to a Ponseti Certified doctor and my daughter

had to be recasted for 3 weeks to regain correction that was lost. Correction

that my last doctor assured me was still present. Casting that my last doctor

had assured me was not needed. She will return to her DBB on July 12th.

I know it is difficult to deal with, but please believe me when I say

that I really do understand how you are feeling. I know what you are looking

for in the AFO, and you may find it, but you will be risking so much. Do you

really want to increase the chance that will have to wear casts when he

is trying to learn to walk? Or face surgery if it can be avoided with some

awkward ingenious brace? When Kaitlin relapsed I did not realize how severe the

relapse was. A relapse occurs long before you can see it with untrained eyes.

I felt so horrible when Dr. Frick said that she would have to be recasted and

possibly have a tenotomy to regain the correction.

Everyone says that DBB problems are often due to a lack of correction.

People on this board even say that their children get so used to the DBB that

they

can't sleep without them and that they want them put on at night. I know that

is hard to believe, but it must be true. I think that it is more of a

discomfort for us as parents than it is to a child that knows no other way and

is so

much faster to adapt than we are.

Just a side note, for the short time that we wore the AFO, Kaitlin's

leg turned bright red from the pressure and she cried horribly. Her entire leg

was sweaty and hot and it did take just as long to put it on as the DBB.

I know that you will do what you want and what you believe is best,

but I had to try to talk you out of it.

The posts from where we discussed the AFO are in the archives as:

21847, 21849, 21854, 21856, 21860, 21862, 21864, 21869, 21883, 21899, 21923,

I guarantee you that I sounded a lot like you do today.

Good Luck with whatever you decide.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

My son wore the AFO's for 18 months and they fit like a dream, were comfortable,

he walked in them, no sores, no slippage, no blisters, etc. - BUT.......NO

CORRECTION either. By the time I found Dr. P it was too late and we had to have

his operation.

s.

- AFO Discussion

,

I just typed up a long message to you, but Yahoo froze when I sent

it, so I'm trying again- argh!

About the AFO- we had an AFO for my daughter prior to her treatment

with Dr. P. It was an awful experience for us. We tried a number of

styles, she had sores, her foot slipped, and her foot was always

soaked with sweat despite the added air circulation holes because of

the plastic. At the time, her foot was not corrected, and she was

slated for surgery. I believe that our experience with the AFO was

similar to many families' first experiences with the FAB/DBB when the

child's foot isn't corrected. No matter what type of brace, it will

not work when the foot isn't corrected!

In case you missed it, there was some discussion about the AFO vs.

DBB not long ago from Kaitlyn's mom, as she was in a similar

situation as you are now.

I think the FAB probably didn't work for because his foot

wasn't corrected, but hopefully since he had the tenotomy, it is

corrected now.

I disagree with your surgeon that the FAB and AFO complete the same

function, because the AFO will not keep the foot rotated outward.

The U of Iowa had a higher rate of relapse when they tried using the

AFO instead of the FAB (years ago) and it is probably because of the

lack of outward rotation. Dr. Ponseti has in the past called the

AFO " useless " , though many doctors disagree. Many of us here defer

to his judgment because he has the long term medical studies and

decades of experience with thousands of feet to back up his

protocol. " Useless " is probably too harsh, it's certainly better

than no brace, but the reason that most of us will promote the FAB is

that it's been shown to be the best defense against relapse.

A relapse can occur at any time. It can occur months or years from

when the child starts wearing the brace. Treatment of relapses can

be as simple as re-casting, or as drastic as surgery, depending on

the child's age and severity of the relapse. Even wearing the FAB

diligently doesn't completely eliminate the chance of relapse, but it

does greatly reduce it. Wearing the AFO should give a better

chance against relapse than no brace at all, but the U of Iowa

information suggests that the FAB is the most effective bracing for

preventing relapse using the Ponseti method. You won't lose any

support here if you choose the AFO, but you will get biased opinions

as to why the FAB is the preferred brace for those who choose to use

the Ponseti method.

Just educate yourself so that you can be confident in the decisions

you make on 's behalf!

Hope this information helps!

& (3-16-00)

> Hello,

>

> I am new to the group. I have a 9 month old with bi-lateral club

> foot. The right one rated 16 the left at 19. We have had a horrible

> time with this process. In fact, I spent the whole afternoon today

> trying to get shoes that would fit him. Only to be sent home from

the

> brace company with plates on the wrong shoes, shoes on the wrong

> feet, and a different angle set on each shoe.

>

> My problem right now is the red tender markings on my son's feet.

> The

> marks are blood red and make several crosses on the tops of his

feet.

> Right now his right foot is so tender that touch sends him into

> tears. The brace company insisted I put the size 000 shoes on the

6th

> hole for my 9 month old 17 lb son. I think this was too tight.

Today

> I insisted on a new pair of shoes (size 0). I haven't tried them

> since my husband had to unassembled and reassemble them. I think we

> will wait a day or two since Matt's feet are so tender. Does

> anyone

> have experience with these types of sores?

>

> Thanks!

>

>

>

>

>

>