Re: Longer times in FAB, trying to get a realistic picture

[Guest guest]

Hi Angle,

Honestly I'm looking to see what Holly will write after seeing

Ponseti.

I think it is best to ask him. The real problem as far as I can

understand, is that if the Dr. think now they can't predict relapses

by the severity or loose ligaments.

I have no answers, sorry.

Idit, mom to Oshri, 8 month. BL ClubFoot, heavy DBB for 16/24 hours.

Finger in mouth 23/24. http://truly_clubfoot.tripod.com - website in

Hebrew. To see the photos click on the leftist link on the top frame.

> This has been a somewhat heated discussion in the last few weeks,

and

> some of us have even taken the discussion off list. Right or

wrong

> as that may be, I had a thought tonight that I wanted to present

to

> see what others think.

>

> First, I am wondering how long the older kids (, Kelley,

Jakob,

> more I am afraid I don't remember right now) stayed in the FAB and

> what, if any determining factors were there for time of " release " ?

>

> Second, I think that many of us fixated on the " 4-5 years " and are

> missing an overall picture. When I reflected on the information,

I

> began to think that perhaps realistically what we are looking at

is 3

> 1/2 to 5 years. Am I just being hopeful here on behalf of others,

or

> does this seem about right?

>

> Angel

[Guest guest]

Hi Angle,

Honestly I'm looking to see what Holly will write after seeing

Ponseti.

I think it is best to ask him. The real problem as far as I can

understand, is that if the Dr. think now they can't predict relapses

by the severity or loose ligaments.

I have no answers, sorry.

Idit, mom to Oshri, 8 month. BL ClubFoot, heavy DBB for 16/24 hours.

Finger in mouth 23/24. http://truly_clubfoot.tripod.com - website in

Hebrew. To see the photos click on the leftist link on the top frame.

> This has been a somewhat heated discussion in the last few weeks,

and

> some of us have even taken the discussion off list. Right or

wrong

> as that may be, I had a thought tonight that I wanted to present

to

> see what others think.

>

> First, I am wondering how long the older kids (, Kelley,

Jakob,

> more I am afraid I don't remember right now) stayed in the FAB and

> what, if any determining factors were there for time of " release " ?

>

> Second, I think that many of us fixated on the " 4-5 years " and are

> missing an overall picture. When I reflected on the information,

I

> began to think that perhaps realistically what we are looking at

is 3

> 1/2 to 5 years. Am I just being hopeful here on behalf of others,

or

> does this seem about right?

>

> Angel

[Guest guest]

Hi Angle,

Honestly I'm looking to see what Holly will write after seeing

Ponseti.

I think it is best to ask him. The real problem as far as I can

understand, is that if the Dr. think now they can't predict relapses

by the severity or loose ligaments.

I have no answers, sorry.

Idit, mom to Oshri, 8 month. BL ClubFoot, heavy DBB for 16/24 hours.

Finger in mouth 23/24. http://truly_clubfoot.tripod.com - website in

Hebrew. To see the photos click on the leftist link on the top frame.

> This has been a somewhat heated discussion in the last few weeks,

and

> some of us have even taken the discussion off list. Right or

wrong

> as that may be, I had a thought tonight that I wanted to present

to

> see what others think.

>

> First, I am wondering how long the older kids (, Kelley,

Jakob,

> more I am afraid I don't remember right now) stayed in the FAB and

> what, if any determining factors were there for time of " release " ?

>

> Second, I think that many of us fixated on the " 4-5 years " and are

> missing an overall picture. When I reflected on the information,

I

> began to think that perhaps realistically what we are looking at

is 3

> 1/2 to 5 years. Am I just being hopeful here on behalf of others,

or

> does this seem about right?

>

> Angel

[Guest guest]

was diagnosed with loose ligaments at 10 months old as her non-

clubfoot was extremely overcorrected and the ankle was rolling inward

(and she had hyperextension in her knees and elbows, wrists, fingers

etc.). We reduced the angle of the shoe for that non clubfoot at

that time.

She started walking just before her first birthday. At that time,

Dr. Ponseti felt that the risk of damaging her good foot with the

brace was greater than her risk of relapse, so we stopped using the

brace. At that time, I knew of only one other family under Dr. P's

care in a similar situation with loose ligaments, and the child was a

boy slightly older than and they lived in California, and the

family did not participate on the internet messageboards. (I learned

this year that that boy did not see anyone for follow up appointments

regularly, and had to have surgery for a relapse recently)

At approximately age 2.5, went through a growth spurt, and we

noticed that she lost most of the dorsiflexion in her clubfoot.

The dorsiflexion that she does have left has varied from 0° to a max

of 5-10° at her follow up appointments. I think the variance just

has to do with the state of her leg at the time- the length of the

bone versus the muscle/tendon units which is changing as she grows

(that plus the fact that measuring dorsiflexion angle is not

an " exact measurement " but mostly an " eyeball measurement " ).

At present, she is 4 years old, and her foot looks and functions

fine, though she does not have the minimum 10-15° of dorsiflexion

that they like the kids to have. She does have a risk of relapse if

she experiences a large growth spurt that the tendon will not be able

to keep up with, but we'll cross that bridge *if* it happens. I

believe that she'll be past this risk by age 5.5-6.

In hindsight with the knowledge he has now, I know that Dr. P would

have kept in the brace longer with reduced hours and/or reduced

angles on the shoes. At the time, she was the first and only loose-

ligament kid in our " internet community " , and we made the decision

that we felt was in her best interest. We cannot say for sure if the

loss of dorsiflexion is related to her not wearing the brace, but it

is likely. I am 100% satisfied with her foot, she's never had any

pain, has never had any functionality issues (tripping etc.), does

not compensate in walking or using stairs etc., and I don't think

that the limited dorsiflexion will hinder/bother her as an adult.

That's our information- hope it helps. And, yes, Angel, I think most

kids would wear the brace until age 3.5-5. I was originally told to

expect to wear the brace until age 3.

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 months old

photos: http://ponseticlubfoot.freeservers.com/

http://pages.ivillage.com/trevillian

[Guest guest]

was diagnosed with loose ligaments at 10 months old as her non-

clubfoot was extremely overcorrected and the ankle was rolling inward

(and she had hyperextension in her knees and elbows, wrists, fingers

etc.). We reduced the angle of the shoe for that non clubfoot at

that time.

She started walking just before her first birthday. At that time,

Dr. Ponseti felt that the risk of damaging her good foot with the

brace was greater than her risk of relapse, so we stopped using the

brace. At that time, I knew of only one other family under Dr. P's

care in a similar situation with loose ligaments, and the child was a

boy slightly older than and they lived in California, and the

family did not participate on the internet messageboards. (I learned

this year that that boy did not see anyone for follow up appointments

regularly, and had to have surgery for a relapse recently)

At approximately age 2.5, went through a growth spurt, and we

noticed that she lost most of the dorsiflexion in her clubfoot.

The dorsiflexion that she does have left has varied from 0° to a max

of 5-10° at her follow up appointments. I think the variance just

has to do with the state of her leg at the time- the length of the

bone versus the muscle/tendon units which is changing as she grows

(that plus the fact that measuring dorsiflexion angle is not

an " exact measurement " but mostly an " eyeball measurement " ).

At present, she is 4 years old, and her foot looks and functions

fine, though she does not have the minimum 10-15° of dorsiflexion

that they like the kids to have. She does have a risk of relapse if

she experiences a large growth spurt that the tendon will not be able

to keep up with, but we'll cross that bridge *if* it happens. I

believe that she'll be past this risk by age 5.5-6.

In hindsight with the knowledge he has now, I know that Dr. P would

have kept in the brace longer with reduced hours and/or reduced

angles on the shoes. At the time, she was the first and only loose-

ligament kid in our " internet community " , and we made the decision

that we felt was in her best interest. We cannot say for sure if the

loss of dorsiflexion is related to her not wearing the brace, but it

is likely. I am 100% satisfied with her foot, she's never had any

pain, has never had any functionality issues (tripping etc.), does

not compensate in walking or using stairs etc., and I don't think

that the limited dorsiflexion will hinder/bother her as an adult.

That's our information- hope it helps. And, yes, Angel, I think most

kids would wear the brace until age 3.5-5. I was originally told to

expect to wear the brace until age 3.

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 months old

photos: http://ponseticlubfoot.freeservers.com/

http://pages.ivillage.com/trevillian

[Guest guest]

was diagnosed with loose ligaments at 10 months old as her non-

clubfoot was extremely overcorrected and the ankle was rolling inward

(and she had hyperextension in her knees and elbows, wrists, fingers

etc.). We reduced the angle of the shoe for that non clubfoot at

that time.

She started walking just before her first birthday. At that time,

Dr. Ponseti felt that the risk of damaging her good foot with the

brace was greater than her risk of relapse, so we stopped using the

brace. At that time, I knew of only one other family under Dr. P's

care in a similar situation with loose ligaments, and the child was a

boy slightly older than and they lived in California, and the

family did not participate on the internet messageboards. (I learned

this year that that boy did not see anyone for follow up appointments

regularly, and had to have surgery for a relapse recently)

At approximately age 2.5, went through a growth spurt, and we

noticed that she lost most of the dorsiflexion in her clubfoot.

The dorsiflexion that she does have left has varied from 0° to a max

of 5-10° at her follow up appointments. I think the variance just

has to do with the state of her leg at the time- the length of the

bone versus the muscle/tendon units which is changing as she grows

(that plus the fact that measuring dorsiflexion angle is not

an " exact measurement " but mostly an " eyeball measurement " ).

At present, she is 4 years old, and her foot looks and functions

fine, though she does not have the minimum 10-15° of dorsiflexion

that they like the kids to have. She does have a risk of relapse if

she experiences a large growth spurt that the tendon will not be able

to keep up with, but we'll cross that bridge *if* it happens. I

believe that she'll be past this risk by age 5.5-6.

In hindsight with the knowledge he has now, I know that Dr. P would

have kept in the brace longer with reduced hours and/or reduced

angles on the shoes. At the time, she was the first and only loose-

ligament kid in our " internet community " , and we made the decision

that we felt was in her best interest. We cannot say for sure if the

loss of dorsiflexion is related to her not wearing the brace, but it

is likely. I am 100% satisfied with her foot, she's never had any

pain, has never had any functionality issues (tripping etc.), does

not compensate in walking or using stairs etc., and I don't think

that the limited dorsiflexion will hinder/bother her as an adult.

That's our information- hope it helps. And, yes, Angel, I think most

kids would wear the brace until age 3.5-5. I was originally told to

expect to wear the brace until age 3.

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 months old

photos: http://ponseticlubfoot.freeservers.com/

http://pages.ivillage.com/trevillian

[Guest guest]

We just got back from seeing Dr Ponseti and he told us that

would be in braces for 3 to 4 years. HTH

1/30/04 Bilateral atypical clubfeet in cast following her

tenotomy on monday

[Guest guest]

Angel,

Jakob got out of the FAB at 3 1/2. When he first went into it at 8

weeks old, Dr. Weinstein told us that it was recommended for 2-4 years,

but he personally liked to see the kids wear it as long as they

tolerated it well. I think that even though we are in Iowa City and go

to the University of Iowa, our experience is a bit different just

because of how Dr. Weinstein has had us do things (which have worked

well for us). Things were also very different for us since we didn't

have anyone to share ideas or experiences with until Jakob was nearly 2

years old and well into the bracing period (he only wore it at night by

then).

As for any " determining factors " that lead to our release, I think one

of the major ones was that Jakob had worn out the bar - no doubt by

jumping on my bed in it For about the last month he wore it, I

noticed that the left shoe rocked on the bar and there was no way to

tighten the connection. Of course, this had to be noticed while Jakob

and I were in Virginia with my family when my grandmother passed away.

I sent Dr. Weinstein an email, who said it would probably hold up until

we got back to town (which it did). I also scheduled a follow up a

couple weeks after I got home to see what we should do. At that follow

up, Jakob also told Dr. Weinstein that he didn't want to wear his brace

anymore. However, if the protocol was what it is now, I'm sure we would

have been given a new bar and gone on using it just like we had been.

I can't say that I fixated on the length of the brace wear. For us,

this was just how things were done. Keep in mind that being in Iowa

City does " limit " your clubfoot treatment options Our first internet

searches came up with surgical information which was NEVER mentioned to

us, so in my mind, this was just the way it was done and we had to do it

or Jakob would never walk.

angelmommy23 wrote:

> This has been a somewhat heated discussion in the last few weeks, and

> some of us have even taken the discussion off list. Right or wrong

> as that may be, I had a thought tonight that I wanted to present to

> see what others think.

>

> First, I am wondering how long the older kids (, Kelley, Jakob,

> more I am afraid I don't remember right now) stayed in the FAB and

> what, if any determining factors were there for time of " release " ?

>

> Second, I think that many of us fixated on the " 4-5 years " and are

> missing an overall picture. When I reflected on the information, I

> began to think that perhaps realistically what we are looking at is 3

> 1/2 to 5 years. Am I just being hopeful here on behalf of others, or

> does this seem about right?

>

> Angel