Re: Thanks so much-one more question

[Guest guest]

I think we had a few things that contributed to Jake's relapse. First

of all, we as parents weren't totally diligent about making Jake wear

his dbb at night, every night. He's a pretty stubborn child so

sometimes the dbb got left off the bedtime routine.

Jake also refused to allow us to do any stretching exercises on his

foot. He would writhe and roll around on the floor, so it was next to

impossible to get any stretching done. I suppose if both Seth & I were

home that one of us could have held him down to do it, but neither one

of us thought that having Jake fighting us on it would really help much

either.

I believe that Jake actually started relapsing over a year ago--I was

noticing his toes turning in and that he was starting to walk more on

the outside of his foot. I discussed the things I was seeing with Dr

Pilcher, our orthopedist here in Cedar Rapids (he's Ponseti-trained).

We tried having Jake wear his open-toed, reverse-last shoe on the left

foot 24 hrs a day, but that didn't seem to help. We went to closed-toe

orthopedic shoes during the day and the dbb at night, starting in summer

2003, but we discovered Jake was getting sore spots on his feet if he

wore both for 24/7, so we had to alternate and eventually went to just

the dbb at night. Unfortunately the sore spots (really nasty blisters

on his toes) kept getting worse, even with wearing the dbb just at

night, that we had to go to every other night (this was starting

sometime this past November). I called Dr Pilcher about it and we ended

up moving up his June appt to early March. Dr Pilcher determined at

that appt, that Jake was definitely relapsing and referred us to Dr

Dietz at the University of Iowa.

Dr Dietz's opinion was to go ahead with ATTT surgery, as children of

Jake's age (3 yrs old) generally don't respond well to casts alone and

will need to ATTT surgery eventually. We have it scheduled for April 27.

I believe that we could have avoided surgery by putting Jake back in

casts last year, when I first noticed his toes turning in and that he

was starting to walk on the outside of his foot. But, I trusted Jake's

dr and went with his recommendations. In hindsight I should have stuck

to my guns more and requested a 2nd opinion at the U of IA. Too late now.

So far as I know, the relapse rate is fairly low, if you follow the

recommendation of wearing the dbb until the child is 3-4 yrs old.

Jake's foot was described by Dr Pilcher as " moderately severe. " He had

an obvious deformity, but it didn't look anywhere near as bad as some

pics of other kids I've seen.

I hope this helps you out.

Kassia

mommy to 3/22/01 (Lt clubfoot, will have ATTT surg 4/27/04)

and 11/22/02

[Guest guest]

I think we had a few things that contributed to Jake's relapse. First

of all, we as parents weren't totally diligent about making Jake wear

his dbb at night, every night. He's a pretty stubborn child so

sometimes the dbb got left off the bedtime routine.

Jake also refused to allow us to do any stretching exercises on his

foot. He would writhe and roll around on the floor, so it was next to

impossible to get any stretching done. I suppose if both Seth & I were

home that one of us could have held him down to do it, but neither one

of us thought that having Jake fighting us on it would really help much

either.

I believe that Jake actually started relapsing over a year ago--I was

noticing his toes turning in and that he was starting to walk more on

the outside of his foot. I discussed the things I was seeing with Dr

Pilcher, our orthopedist here in Cedar Rapids (he's Ponseti-trained).

We tried having Jake wear his open-toed, reverse-last shoe on the left

foot 24 hrs a day, but that didn't seem to help. We went to closed-toe

orthopedic shoes during the day and the dbb at night, starting in summer

2003, but we discovered Jake was getting sore spots on his feet if he

wore both for 24/7, so we had to alternate and eventually went to just

the dbb at night. Unfortunately the sore spots (really nasty blisters

on his toes) kept getting worse, even with wearing the dbb just at

night, that we had to go to every other night (this was starting

sometime this past November). I called Dr Pilcher about it and we ended

up moving up his June appt to early March. Dr Pilcher determined at

that appt, that Jake was definitely relapsing and referred us to Dr

Dietz at the University of Iowa.

Dr Dietz's opinion was to go ahead with ATTT surgery, as children of

Jake's age (3 yrs old) generally don't respond well to casts alone and

will need to ATTT surgery eventually. We have it scheduled for April 27.

I believe that we could have avoided surgery by putting Jake back in

casts last year, when I first noticed his toes turning in and that he

was starting to walk on the outside of his foot. But, I trusted Jake's

dr and went with his recommendations. In hindsight I should have stuck

to my guns more and requested a 2nd opinion at the U of IA. Too late now.

So far as I know, the relapse rate is fairly low, if you follow the

recommendation of wearing the dbb until the child is 3-4 yrs old.

Jake's foot was described by Dr Pilcher as " moderately severe. " He had

an obvious deformity, but it didn't look anywhere near as bad as some

pics of other kids I've seen.

I hope this helps you out.

Kassia

mommy to 3/22/01 (Lt clubfoot, will have ATTT surg 4/27/04)

and 11/22/02

[Guest guest]

This is taken from a publication Clubfoot: Ponseti Management

pamphlet.

" 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) "

So...

Diligence is obviously of utmost importance when maintaining full

correction of the foot/feet.

Holly

Zachary 7/27/02

Unilateral Right Clubfoot

Treated by Dr. Ponseti

14 hrs/day DBB

> I am so grateful to you all for your wonderful response to my

query

> regarding Ponseti-trained doctors in Orange County. We are going

to

> try to talk to as many as possible before the birth to see with

whom

> we are most comfortable.

>

> I have another question. I have noticed on the boards that a few

of

> your children experienced " set backs " or regressions in their

later

> toddler years even after being casted in the Ponseti method.

> What is generally the reason for these recurrences? Does it have

to

> do with follow up care or perhaps how extreme the condition was to

> begin with? Do most children go on to have little or no

recurrence?

> I am just trying to get an idea of what the overall percentage is

for

> later complications so that I know the right questions to ask the

> doctors we meet with.

>

> Thank you so very much, you don't know how much I appreciate your

> kindness and openess.

[Guest guest]

Here is an article by Dr. Ponseti from 2001 on Relapses in the

Ponseti method.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/13223

and (3-17-99)

> I am so grateful to you all for your wonderful response to my

query

> regarding Ponseti-trained doctors in Orange County. We are going

to

> try to talk to as many as possible before the birth to see with

whom

> we are most comfortable.

>

> I have another question. I have noticed on the boards that a few

of

> your children experienced " set backs " or regressions in their

later

> toddler years even after being casted in the Ponseti method.

> What is generally the reason for these recurrences? Does it have

to

> do with follow up care or perhaps how extreme the condition was to

> begin with? Do most children go on to have little or no

recurrence?

> I am just trying to get an idea of what the overall percentage is

for

> later complications so that I know the right questions to ask the

> doctors we meet with.

>

> Thank you so very much, you don't know how much I appreciate your

> kindness and openess.

[Guest guest]

thanks Kassia for the detailed story of Jake. Our dr. wants all kids

to put the shoew 'till age 2. but we are planning to put them until

the age of 3.

thanks for the link to the article. I will translate it to

Heberw for my son's website.

Idiit. mom to Oshr. 7 month. heavy dbb.

> I think we had a few things that contributed to Jake's relapse.

First

> of all, we as parents weren't totally diligent about making Jake

wear

> his dbb at night, every night. He's a pretty stubborn child so

> sometimes the dbb got left off the bedtime routine.

>

> Jake also refused to allow us to do any stretching exercises on

his

> foot. He would writhe and roll around on the floor, so it was

next to

> impossible to get any stretching done. I suppose if both Seth & I

were

> home that one of us could have held him down to do it, but neither

one

> of us thought that having Jake fighting us on it would really help

much

> either.

>

> I believe that Jake actually started relapsing over a year ago--I

was

> noticing his toes turning in and that he was starting to walk more

on

> the outside of his foot. I discussed the things I was seeing with

Dr

> Pilcher, our orthopedist here in Cedar Rapids (he's Ponseti-

trained).

> We tried having Jake wear his open-toed, reverse-last shoe on the

left

> foot 24 hrs a day, but that didn't seem to help. We went to

closed-toe

> orthopedic shoes during the day and the dbb at night, starting in

summer

> 2003, but we discovered Jake was getting sore spots on his feet if

he

> wore both for 24/7, so we had to alternate and eventually went to

just

> the dbb at night. Unfortunately the sore spots (really nasty

blisters

> on his toes) kept getting worse, even with wearing the dbb just at

> night, that we had to go to every other night (this was starting

> sometime this past November). I called Dr Pilcher about it and we

ended

> up moving up his June appt to early March. Dr Pilcher determined

at

> that appt, that Jake was definitely relapsing and referred us to

Dr

> Dietz at the University of Iowa.

>

> Dr Dietz's opinion was to go ahead with ATTT surgery, as children

of

> Jake's age (3 yrs old) generally don't respond well to casts alone

and

> will need to ATTT surgery eventually. We have it scheduled for

April 27.

>

> I believe that we could have avoided surgery by putting Jake back

in

> casts last year, when I first noticed his toes turning in and that

he

> was starting to walk on the outside of his foot. But, I trusted

Jake's

> dr and went with his recommendations. In hindsight I should have

stuck

> to my guns more and requested a 2nd opinion at the U of IA. Too

late now.

>

> So far as I know, the relapse rate is fairly low, if you follow

the

> recommendation of wearing the dbb until the child is 3-4 yrs old.

> Jake's foot was described by Dr Pilcher as " moderately severe. "

He had

> an obvious deformity, but it didn't look anywhere near as bad as

some

> pics of other kids I've seen.

>

> I hope this helps you out.

>

> Kassia

> mommy to 3/22/01 (Lt clubfoot, will have ATTT surg 4/27/04)

> and 11/22/02

[Guest guest]

Antoinette,

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

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

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

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

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

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

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

the doctors are able to piece together more information since they

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

seems that the working theory is that some children have relapses

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

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

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

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

experienced a quick regression and needed the ATTT procedure by age

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

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

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

another example of this situation where a sudden growth spurt causes

the foot to relapse.

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

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

diligently.

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

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

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

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

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

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

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

much more important.

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

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

information about the causes and prevention of regression.

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

doctors talking about.

Regards,

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 months old

> I am so grateful to you all for your wonderful response to my query

> regarding Ponseti-trained doctors in Orange County. We are going

to

> try to talk to as many as possible before the birth to see with

whom

> we are most comfortable.

>

> I have another question. I have noticed on the boards that a few

of

> your children experienced " set backs " or regressions in their later

> toddler years even after being casted in the Ponseti method.

> What is generally the reason for these recurrences? Does it have

to

> do with follow up care or perhaps how extreme the condition was to

> begin with? Do most children go on to have little or no

recurrence?

> I am just trying to get an idea of what the overall percentage is

for

> later complications so that I know the right questions to ask the

> doctors we meet with.

>

> Thank you so very much, you don't know how much I appreciate your

> kindness and openess.