Re: Severity vs. relapse

May 6, 2004

Hi , I just posted below you about hoping to take kelby's shoes

off for good once he hits 3...now i'm thinking that that won't

happen! has ponseti been encouraging parents to keep their kids in

the dbb past 3 now? i wish we could go to iowa again to do kelby's

check up there, but unfortunately i'm not able to do that. now i'm

curious about other doctors having the kids wait on getting rid of

the shoes ~ wonder what the doctors here in florida would

recommend??? hope you're doing well.

Tia

May 6, 2004

Tia - that has actually been the hot topic for discussion this past

month. Check out the archives, there has been word from Iowa that they're

changing the 3-4 recommendation to 4-5. I know, we're all not thrilled

with the prospect but the possible alternatives are much worse (surgery or

casting and DBB and hope it works) so we're eating it and swallowing it and

keeping it down so to speak. There have been a number of parents of older

children coming here recently and saying they stopped the DBB too early

(most had local docs give the ok) and now their having the ATTT surgery or

getting casted again for relapses. The all have said they wished they'd

kept the DBB on longer - hindsight being 20/20 we're being told to hunker

down and plan for 4-5 years now and be happy about it! hehe... well, not

exactly but I'm sure you will see what I mean.

BTW - nice to see the old timers! You all give us newbies such hope.

>

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

May 7, 2004

, thanks.

idit

> Just wanted to chime in that Dr. Morcuende told me in March that

they

> have not found any relationship between severity at birth and the

> risk of relapse (at any age). Therefore, despite a child's foot

> being " mild " or " severe " at birth, the risk of relapse is present

> until they're past that 6 year old age (per my earlier post about

the

> frequencies). It probably won't help most of our children, but

I'm

> sure they're doing the medical studies and will have some answers

> (hopefully) in a few years' time. I believe that they used to

think

> that " mild " feet were less prone to relapse, but some recent cases

of

> 3-4 year olds with sudden and severe relapse have changed that

> thinking. I hope that the importance of bracing past age 3 will

be

> taken seriously by all the doctors using the method.

> Regards,

>

May 7, 2004

When we saw Dr. Pirani for a checkup in March, I asked him how long

he suggested use of the FAB. He said at the very minimum, 2½ years

but that he would like it to be used for 3 years if not longer. My

plan in this regard is to see what has been suggested by Dr. Ponseti

at that time (we're still 2 years away from that point!). As long

as Owen still tolerates the FAB well, I would much rather be

proactive where relapse is concerned and continue with it to age 4 or

5 (or 6 even, if necessary).

Daiga

> Hi , I just posted below you about hoping to take kelby's

shoes

> off for good once he hits 3...now i'm thinking that that won't

> happen! has ponseti been encouraging parents to keep their kids in

> the dbb past 3 now? i wish we could go to iowa again to do kelby's

> check up there, but unfortunately i'm not able to do that. now i'm

> curious about other doctors having the kids wait on getting rid of

> the shoes ~ wonder what the doctors here in florida would

> recommend??? hope you're doing well.

> Tia

May 7, 2004

,

I am pretty sure I read in one of 's articles that the " whatever " is most

active right before birth and in the first few months of life. I thought it

also said that it is more active in severe cases and less active in mild cases.

This " whatever " is what causes relapses. Perhaps I am wrong about this.

We were told by Dr. Mosca that if we did everything he told us to do, which was

23/7 for 3 months and 10-12 hours per night until she is 2 1/2, she had an 80%

chance she wouldn't need surgery. Has all the data that was gathered for the

last 50 years been wrong and now children have to wear the brace until possibly

age 6?

I am trying not to be too skeptical, but it sure seems like an awful drastic

change in protocol for something that has been used virtually unaltered for

50+years.

Robin & Rose

3/12/03 Right Club Foot.

iditwagner iditwagner@...> wrote:

, thanks.

idit

> Just wanted to chime in that Dr. Morcuende told me in March that

they

> have not found any relationship between severity at birth and the

> risk of relapse (at any age). Therefore, despite a child's foot

> being " mild " or " severe " at birth, the risk of relapse is present

> until they're past that 6 year old age (per my earlier post about

the

> frequencies). It probably won't help most of our children, but

I'm

> sure they're doing the medical studies and will have some answers

> (hopefully) in a few years' time. I believe that they used to

think

> that " mild " feet were less prone to relapse, but some recent cases

of

> 3-4 year olds with sudden and severe relapse have changed that

> thinking. I hope that the importance of bracing past age 3 will

be

> taken seriously by all the doctors using the method.

> Regards,

>

May 7, 2004

>

> I am trying not to be too skeptical, but it sure seems like an

awful drastic change in protocol for something that has been used

virtually unaltered for 50+years.

>

Robin,

According to the Virtual Hospital site - which is Dr Ponseti's

informational site - the bracing protocal has always (or for a very

long time) been " Following correction the clubfoot deformity tends to

relapse. To prevent relapses, when the last plaster cast is removed a

splint must be worn full-time for two to three months and thereafter

at night for 2 to 4 years. "

I was my understanding from the beginning that those children who

were on the 2 year end of the spectrum were those diagnosed with

loose ligament whose feet tended to be damaged by the 70 degree

exterior rotation. It has since been found that many children with

loose ligaments who were released from the brace in their second year

subsequentally had a relapse. In turn, Dr Ponseti now has the angle

reduced in the brace rather than discontinuing use so early.

I honestly cant say for certain if Dr Mosca ever even discussed this

with us, but I always assumed from the beginning that the brace wear

would be 3-4 years. This is the impression I have always gotten from

this group, and nothing in the last year changed that perception.

That being the case, it is not a far reach for me to accept 4-5

years.

Also, having a 6 year old, I can attest to the fact that there is a

large growth spurt in the third year. I also know from my 2 year old

who has moderate to severe metatarsus adductus that every time there

is a growth spurt her feet become grossly curved and she suffers a

great deal of tripping and stumbling. Putting those two bits of

information together led me to the natural conclusion that 3.5 to 4

years is a good, conservative time in the brace.

I completely understand how daunting it seems to be hearing the

number of years go up. It seems like forever. But it really is

not. I can honestly say that I would rather Kai wear a brace while

sleeping until puberty that to face surgery.

By the time Rose is 2.5 years old, there will be more definitive

information available. I suggest the best thing is to get used to

the idea that it *might* be longer than 2.5 years, and then if it is

not, you can be plesantly surprised rather than disappointed if it is.

Angel

May 11, 2004

Hi angel,

Evan was one of the mild cases that was out of the FAB at 2 on Dr.

Mosca's advice and we are now re-casting him at age 3 yrs. 8 mo. and

we are hoping with all our might that this will help us avoid

surgery. We also thought that because Evan was a mild case he would

never relapse and now here we are. At this point we also debated our

options: one small surgery and we're done with it or re-casting and

back into the FAB for who knows how long. The deciding factor for us

was that surgery means 2-3 weeks in casts to get re-corrected,

followed by the ATTT, and then THAT is followed by 4-6 WEEKS in

casts. So sleeping with a brace on seemed much better to us than at

least 2 months in full casts. If this re-casting works, I'll

secretly be glad that we've given Evan 2 years out of the brace,

though!!! 8) If it doesn't work we'll continue to kick ourselves!!

>

> >

> > I am trying not to be too skeptical, but it sure seems like an

> awful drastic change in protocol for something that has been used

> virtually unaltered for 50+years.

> >

>

> Robin,

>

> According to the Virtual Hospital site - which is Dr Ponseti's

> informational site - the bracing protocal has always (or for a very

> long time) been " Following correction the clubfoot deformity tends

to

> relapse. To prevent relapses, when the last plaster cast is removed

a

> splint must be worn full-time for two to three months and

thereafter

> at night for 2 to 4 years. "

>

> I was my understanding from the beginning that those children who

> were on the 2 year end of the spectrum were those diagnosed with

> loose ligament whose feet tended to be damaged by the 70 degree

> exterior rotation. It has since been found that many children with

> loose ligaments who were released from the brace in their second

year

> subsequentally had a relapse. In turn, Dr Ponseti now has the

angle

> reduced in the brace rather than discontinuing use so early.

>

> I honestly cant say for certain if Dr Mosca ever even discussed

this

> with us, but I always assumed from the beginning that the brace

wear

> would be 3-4 years. This is the impression I have always gotten

from

> this group, and nothing in the last year changed that perception.

> That being the case, it is not a far reach for me to accept 4-5

> years.

>

> Also, having a 6 year old, I can attest to the fact that there is a

> large growth spurt in the third year. I also know from my 2 year

old

> who has moderate to severe metatarsus adductus that every time

there

> is a growth spurt her feet become grossly curved and she suffers a

> great deal of tripping and stumbling. Putting those two bits of

> information together led me to the natural conclusion that 3.5 to 4

> years is a good, conservative time in the brace.

>

> I completely understand how daunting it seems to be hearing the

> number of years go up. It seems like forever. But it really is

> not. I can honestly say that I would rather Kai wear a brace while

> sleeping until puberty that to face surgery.

>

> By the time Rose is 2.5 years old, there will be more definitive

> information available. I suggest the best thing is to get used to

> the idea that it *might* be longer than 2.5 years, and then if it

is

> not, you can be plesantly surprised rather than disappointed if it

is.

>

> Angel

>

May 18, 2004

Hi ,

Thanks for the post, I was just going to ask if anyone knew at what

age a clubfoot patient has to pass before relapse is no longer

considered a threat? So from what you know, 6 years old is it. Does

that mean that if a child hasn't relapsed by then, they won't or is

it still a case by case theory? I wish there was a magic number,

whatever it may be. I did'nt catch your earlier post, so I am just

reading about relapse rate at an older age. When was your earlier

post, I'd like to go back and read it.

Holly and

> Just wanted to chime in that Dr. Morcuende told me in March that

they

> have not found any relationship between severity at birth and the

> risk of relapse (at any age). Therefore, despite a child's foot

> being " mild " or " severe " at birth, the risk of relapse is present

> until they're past that 6 year old age (per my earlier post about

the

> frequencies). It probably won't help most of our children, but I'm

> sure they're doing the medical studies and will have some answers

> (hopefully) in a few years' time. I believe that they used to

think

> that " mild " feet were less prone to relapse, but some recent cases

of

> 3-4 year olds with sudden and severe relapse have changed that

> thinking. I hope that the importance of bracing past age 3 will be

> taken seriously by all the doctors using the method.

> Regards,

>

May 18, 2004

Hi ,

Thanks for the post, I was just going to ask if anyone knew at what

age a clubfoot patient has to pass before relapse is no longer

considered a threat? So from what you know, 6 years old is it. Does

that mean that if a child hasn't relapsed by then, they won't or is

it still a case by case theory? I wish there was a magic number,

whatever it may be. I did'nt catch your earlier post, so I am just

reading about relapse rate at an older age. When was your earlier

post, I'd like to go back and read it.

Holly and

> Just wanted to chime in that Dr. Morcuende told me in March that

they

> have not found any relationship between severity at birth and the

> risk of relapse (at any age). Therefore, despite a child's foot

> being " mild " or " severe " at birth, the risk of relapse is present

> until they're past that 6 year old age (per my earlier post about

the

> frequencies). It probably won't help most of our children, but I'm

> sure they're doing the medical studies and will have some answers

> (hopefully) in a few years' time. I believe that they used to

think

> that " mild " feet were less prone to relapse, but some recent cases

of

> 3-4 year olds with sudden and severe relapse have changed that

> thinking. I hope that the importance of bracing past age 3 will be

> taken seriously by all the doctors using the method.

> Regards,

>

May 18, 2004

Hi ,

Thanks for the post, I was just going to ask if anyone knew at what

age a clubfoot patient has to pass before relapse is no longer

considered a threat? So from what you know, 6 years old is it. Does

that mean that if a child hasn't relapsed by then, they won't or is

it still a case by case theory? I wish there was a magic number,

whatever it may be. I did'nt catch your earlier post, so I am just

reading about relapse rate at an older age. When was your earlier

post, I'd like to go back and read it.

Holly and

> Just wanted to chime in that Dr. Morcuende told me in March that

they

> have not found any relationship between severity at birth and the

> risk of relapse (at any age). Therefore, despite a child's foot

> being " mild " or " severe " at birth, the risk of relapse is present

> until they're past that 6 year old age (per my earlier post about

the

> frequencies). It probably won't help most of our children, but I'm

> sure they're doing the medical studies and will have some answers

> (hopefully) in a few years' time. I believe that they used to

think

> that " mild " feet were less prone to relapse, but some recent cases

of

> 3-4 year olds with sudden and severe relapse have changed that

> thinking. I hope that the importance of bracing past age 3 will be

> taken seriously by all the doctors using the method.

> Regards,

>

May 18, 2004

For moms and dads with the questions about length of FAB wear, I just

wanted to add that I actually " requested " that my daugther wear the

FAB for just a little longer (and she is a patient of Dr. Ponseti) at

one point during our treatment. I just did'nt feel comfortable with

her going out of it too soon and so I discussed this point with Dr.

Ponseti at our next appointment. He agreed that it was fine but he

did'nt want to continue with the shoes too long because is very

flat footed. We discontinued the FAB a few months later and that was

when her feet started to move, so we went back into the shoes. At

that point I told him, we can live with flat feet and that I wasn't

convinced that the shoes were the culprit, 's feet resemble my

husbands in shape and flat footedness (and he did not have clubfeet).

We really were'nt worried about that, we just did'nt want to relapse.

So, now we're in for the long haul.

Go with your gut and discuss whatever you have a question about with

whatever doctor you are seeing. Here I was questioning Dr. Ponseti

about something that he knows about better than anyone else. He was

glad though and now I am glad that I went with my gut feelings.

Holly and (born: Feb.11,2000, mod.severe bilater clubfoot)

> Tia - that has actually been the hot topic for discussion this past

> month. Check out the archives, there has been word from Iowa that

they're

> changing the 3-4 recommendation to 4-5. I know, we're all not

thrilled

> with the prospect but the possible alternatives are much worse

(surgery or

> casting and DBB and hope it works) so we're eating it and

swallowing it and

> keeping it down so to speak. There have been a number of parents

of older

> children coming here recently and saying they stopped the DBB too

early

> (most had local docs give the ok) and now their having the ATTT

surgery or

> getting casted again for relapses. The all have said they wished

they'd

> kept the DBB on longer - hindsight being 20/20 we're being told to

hunker

> down and plan for 4-5 years now and be happy about it! hehe...

well, not

> exactly but I'm sure you will see what I mean.

>

> BTW - nice to see the old timers! You all give us newbies such

hope.

>

> >

>

> Kori

> Mama of

> Kenton 6/98

> Merek 3/00

> Darbi 3/03 - Rt. CF - DBB 12hr/day

> (¨`·.·´¨)

> `·.¸(¨`·.·´¨)

> `·.¸.·´

May 18, 2004