Re: 1st post/ TO hosp

February 8, 2005

Welcome !

Thanks for sharing your story.

I haven't heard much about the Ponseti method at the TO Children's hosp. In

fact a few years ago I heard that they were very big on surgery only....

If you wouldn't mind being a part-time sleuth for us could you find out and

post some info like: your Dr.'s name, how long he/she or others there have

been practicing the method, how many casts they need on average to fully

correct the feet, when (or if) they went to Iowa for training, and what

their rate of performing posterior releases is currently. Are they

recommending the foot abduction brace for full time use for 3 months and

then down to 16 hours a day?

BTW us Canadians can also be found on clubfootcanada (

http://groups.yahoo.com/group/clubfootcanada/ ).

Thanks a lot, the information would be really appreciated and could help a

lot of others out there. OTOH if you are not interested in finding all this

out we would understand.

& Emma

Emma 18-10-99. Montreal, Canada

moderately severe bilateral clubfoot

3 months unsuccessful local casting pending surgery

corrected by Dr. Ponseti with 3 casts & tenotomy

out of FAB too early, just before 2 yrs old (loose ligaments)

relapse, ATTT at 4 years old, doing great.

1st post

Hi Folks,

I am the proud father of a very active 1 yr old boy. Along with my

good looks, my son inherited my bilateral clubfeet as well. My

brother was also born with one clubfoot.

Anyway, we were informed prior to his birth of the condition, so I

researched what had changed since my treatment 35 yrs ago and found

that the Ponsetti method was very popular/successful, and used by our

Children's Hospital here in Toronto.

He wears his DBB's around 12 -15 hrs a day now, mostly sleeping at

night. Usually wakes up slightly every few hours, but he can be

adjusted and put to sleep again. He was recently ill for a couple of

days and did not sleep well at all. But I realize that it wasn't the

shoes, only his cold. Needless to say, my wife and I didn't sleep

much either.

Anyway, I thought I'd say hello and pass along our story. Things are

going well so far. My son crawls a lot, and has been 'cruising' with

a walker. I often wonder if it's best to keep the child in a pair of

shoes during the day, or socks only. I hear different things from the

experts.

For those concerned parents, I'd like to let you know that I led a

very normal childhood with lots of sports. Only now do I notice a bit

of stiffness after high impact activities. Keep in mind I was

operated on as an infant. It's something I never really dwelled on

growing up.

Cheers,

February 9, 2005

Hello,

It's my understanding that Toronto Sick Kids Hospital now exclusively

treats clubfoot patients using Ponsetti method. I meet with Dr. Alman

next month and can ask him some of your questions then. However, they

have one dedicated Physio, for all the Doctors, who performs the

casting during the club foot clinic day when all the babies arrive for

re-casting. It's really quite the place. Casts were easily removed

by myself the morning of his appointments at home.

My son was casted weekly from birth with quick results. Tenotomy

after 12 weeks I believe, with parents allowed to attend procedure. 3

week cast after that, then DBB 23 hrs a day for 3 months. After that,

reduced to between 12 - 16 hrs a day. He's now 13 months old. I

believe it has only been 2 or so years that the hospital has adopted

this procedure. I can't comment on their success rate, but it sounds

good. I meet many parents that are referred there from other Ontario

hospitals that were unable to correct child's feet after casting

attempts. It's just that not all Pediatricians understand what

clubfeet are and how to treat them.

So far so good. Feet look great.

Bye for now,

> Welcome !

>

> Thanks for sharing your story.

>

> I haven't heard much about the Ponseti method at the TO Children's

hosp. In

> fact a few years ago I heard that they were very big on surgery

only....

> If you wouldn't mind being a part-time sleuth for us could you find

out and

> post some info like: your Dr.'s name, how long he/she or others

there have

> been practicing the method, how many casts they need on average to

fully

> correct the feet, when (or if) they went to Iowa for training, and

what

> their rate of performing posterior releases is currently. Are they

> recommending the foot abduction brace for full time use for 3

months and

> then down to 16 hours a day?

>

> BTW us Canadians can also be found on clubfootcanada (

> http://groups.yahoo.com/group/clubfootcanada/ ).

>

> Thanks a lot, the information would be really appreciated and could

help a

> lot of others out there. OTOH if you are not interested in finding

all this

> out we would understand.

>

> & Emma

> Emma 18-10-99. Montreal, Canada

> moderately severe bilateral clubfoot

> 3 months unsuccessful local casting pending surgery

> corrected by Dr. Ponseti with 3 casts & tenotomy

> out of FAB too early, just before 2 yrs old (loose ligaments)

> relapse, ATTT at 4 years old, doing great.

>

> 1st post

>

> Hi Folks,

>

> I am the proud father of a very active 1 yr old boy. Along with my

> good looks, my son inherited my bilateral clubfeet as well. My

> brother was also born with one clubfoot.

>

> Anyway, we were informed prior to his birth of the condition, so I

> researched what had changed since my treatment 35 yrs ago and found

> that the Ponsetti method was very popular/successful, and used by

our

> Children's Hospital here in Toronto.

>

> He wears his DBB's around 12 -15 hrs a day now, mostly sleeping at

> night. Usually wakes up slightly every few hours, but he can be

> adjusted and put to sleep again. He was recently ill for a couple

of

> days and did not sleep well at all. But I realize that it wasn't

the

> shoes, only his cold. Needless to say, my wife and I didn't sleep

> much either.

>

> Anyway, I thought I'd say hello and pass along our story. Things

are

> going well so far. My son crawls a lot, and has been 'cruising'

with

> a walker. I often wonder if it's best to keep the child in a pair

of

> shoes during the day, or socks only. I hear different things from

the

> experts.

>

> For those concerned parents, I'd like to let you know that I led a

> very normal childhood with lots of sports. Only now do I notice a

bit

> of stiffness after high impact activities. Keep in mind I was

> operated on as an infant. It's something I never really dwelled on

> growing up.

>

> Cheers,

>

February 9, 2005

,

There's a parents' checklist at this site:

http://pages.ivillage.com/ponseti_links that might be helpful in

determining if the doctors are using the method correctly based on

what you've already gone through there and in speaking with the

doctor at the next appointment.

I'm hopeful that they are. If your son was treated from birth, he

should have needed 5-7 casts changed weekly and 9 at the most if he

had no other complications- so 12 weeks of casting seems a bit

excessive prior to the tenotomy...but if the tenotomy cast came off

on the 12th week, then that would make a bit more sense. Sometimes

it seems that doctors who are new to the method, or aren't

quite " getting it " seem to take a lot longer to achieve the

correction...or sometimes don't even obtain the correction after

months of trying.

Thanks for sharing your son's story with us- that's great that he's

doing so well!

Regards,

& (3-16-00)

left clubfoot

February 9, 2005

,

Yes, you're quite right. It was 9 weeks casting plus 3 after the

tenotomy. I checked my calendar.

They seem to have followed that checklist exactly. But I did notice

that they are not 'officially' listed under registered Ponsetti

doctors in Canada. Not sure if that matters but the results so far

look good.

I'm curious if everyone continues the daily stretching exercises

recommended after the casting phase ends? We are still doing it but

maybe not each day.

Thanks,

>

> ,

> There's a parents' checklist at this site:

> http://pages.ivillage.com/ponseti_links that might be helpful in

> determining if the doctors are using the method correctly based on

> what you've already gone through there and in speaking with the

> doctor at the next appointment.

> I'm hopeful that they are. If your son was treated from birth, he

> should have needed 5-7 casts changed weekly and 9 at the most if he

> had no other complications- so 12 weeks of casting seems a bit

> excessive prior to the tenotomy...but if the tenotomy cast came off

> on the 12th week, then that would make a bit more sense. Sometimes

> it seems that doctors who are new to the method, or aren't

> quite " getting it " seem to take a lot longer to achieve the

> correction...or sometimes don't even obtain the correction after

> months of trying.

> Thanks for sharing your son's story with us- that's great that he's

> doing so well!

> Regards,

> & (3-16-00)

> left clubfoot

February 9, 2005

Stretching is not necessary with the Ponseti Method although I do know Dr.

Dobbs asks his patients to do it (there's an instruction brochure in the

files section here). Dr. Ponseti says don't worry about it, all the

stretching the child needs will happen by them walking and standing on

these footlets. I'm happy with that and for us, seems to be working just

fine. I doubt I've stretched her feet ever... maybe during a little

massage time but not consciously stretching.

HTH

Kori

At 01:34 PM 2/9/2005, you wrote:

>,

>

>Yes, you're quite right. It was 9 weeks casting plus 3 after the

>tenotomy. I checked my calendar.

>

>They seem to have followed that checklist exactly. But I did notice

>that they are not 'officially' listed under registered Ponsetti

>doctors in Canada. Not sure if that matters but the results so far

>look good.

>

>I'm curious if everyone continues the daily stretching exercises

>recommended after the casting phase ends? We are still doing it but

>maybe not each day.

>

>Thanks,

>

> >

> > ,

> > There's a parents' checklist at this site:

> > http://pages.ivillage.com/ponseti_links that might be helpful in

> > determining if the doctors are using the method correctly based on

> > what you've already gone through there and in speaking with the

> > doctor at the next appointment.

> > I'm hopeful that they are. If your son was treated from birth, he

> > should have needed 5-7 casts changed weekly and 9 at the most if he

> > had no other complications- so 12 weeks of casting seems a bit

> > excessive prior to the tenotomy...but if the tenotomy cast came off

> > on the 12th week, then that would make a bit more sense. Sometimes

> > it seems that doctors who are new to the method, or aren't

> > quite " getting it " seem to take a lot longer to achieve the

> > correction...or sometimes don't even obtain the correction after

> > months of trying.

> > Thanks for sharing your son's story with us- that's great that he's

> > doing so well!

> > Regards,

> > & (3-16-00)

> > left clubfoot

>

February 9, 2005

Hi ,

Thanks for sharing the info. It sounds like the TO Childrens is doing a

great job which is a huge relief to hear. They would have to submit a

checklist of things to Dr. Ponseti to be included on his list of accredited

doctors. Dr. P shares this list with parents who would like their doctors

to become certified:

" Before a physician's name is added to my web site, I require the physician

submit photos of the feet of three babies she has treated showing the feet

before treatment was started, one photo of each baby in a cast so I can

evaluate the cast molding, and one photo showing the feet after treatment is

complete. The physician must also furnish information regarding the number

of casts used, how often they were changed, what type of casting material

was used, did the casts extend above the knee, was a tenotomy done, was

local or general anesthesia used, what type of brace was prescribed, etc.

However, often physicians choose to make their own modifications on our

treatment protocol and this may cause less than optimum results. If you

will go to the web site global-help.org and click on publications, you can

download a free copy of the booklet Clubfoot: Ponseti Management. "

Dr. Ponseti does not usually recommend any stretching exercises in the

normal course of treatment. He told us right off that he didn't think it

helps at all.

thanks again,