RE: She's here! Our April baby came in March

[Guest guest]

Liz,

Congratulations on the birth of your precious granddaughter!!! Bren

is such a beautiful name!

Be sure to keep us posted on her progress.

All the best,

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/7

>

> My beautiful granddaughter arrived 3 weeks early on March 30! As

the

> ultrsound showed she does have pretty severe B/L clubfoot. After a

lot

> of searching and researching we finally found a doctor in Knoxville

> that trained with Dr. Ponsetti! It was quite by serendipity that we

> found him though. My granddaughter and her mom and dad were referred

> to Dr. Madigan at Knoxville Orthopedic Center, one of the 2

pediatric

> orthopedists there. We all went to the first appointment planning on

> just a consult in the beginning. In his office he started examining

> Bren's feet in great detail and educating us on what was going on

> physiologically with them. Then he started explaining about the

> Ponsetti Methhod! We just kind of dropped our jaws and stared at

him

> for a minute - then in unison our whole little family group

said 'You

> use the Ponsetti Method??!!!' He seemed equally shocked that we

were

> so educated about Ponsetti. He gave us a little more history on

> Dr.Ponsetti himself and explained that yes, he had trained,

certified,

> etc., with him. We told him when we did our search for someone who

> used this method we never saw his name on the list of registered

> doctors at IU and his team nurse practioner said she was going to

> find out why he was not listed because he should certainly be there!

> Bren got her first set of casts that day - she was the only one not

to

> thrilled about being there. She will probably have 9-12 castings and

> have the tendons lengthend along the way, the braces, etc. Dr.

Madigan

> said clubfoot was very rare in girls and for some reason equally

hard

> to correct in girls. By the end of the first appointment we were

all

> very impressed with him and his team. They were all terrific and

> really good with baby Bren. The only down part of this so far has

been

> that Bren was very jaundiced and of course that meant checking blood

> several times. That meant several trips to the Children's Hospital

so

> someone very, very experienced could draw her blood. Yesterday she

got

> her second casting and same as with the first one she was grouchy

for

> about 24 hrs and then got over it. We are crossing our fingers that

> everything will go according to schedule but whether it does or not

> I'm sure we're going to but a lot of mileage on this board!

>

> Thanks everyone!

>

> Liz

> mim2g&b

>

> (and mother of johnna71

[Guest guest]

Congrats on the new baby!! That's so great you found a close Ponseti-

trained doctor! I'm sure that relieved a lot of stress! I've read

that CF is more prevalent in boys, but I've noticed alot of girls

around here--including my own! :-) My Ava also had her blood drawn 3

times because of jaundice, plus a blood-sugar test because she was

so big, plus the PKU--and no one would touch her club foot, so it

was all from the left foot. It was so cut up by the time she was 4

days old! I hope the jaundice is going away--remember, lots of

sunlight!

, mommy of:

Guinevere, on, Ava 8/4/04 RCF ABS FAB 18/7

>

> My beautiful granddaughter arrived 3 weeks early on March 30! As

the

> ultrsound showed she does have pretty severe B/L clubfoot. After a

lot

> of searching and researching we finally found a doctor in Knoxville

> that trained with Dr. Ponsetti! It was quite by serendipity that

we

> found him though. My granddaughter and her mom and dad were

referred

> to Dr. Madigan at Knoxville Orthopedic Center, one of the 2

pediatric

> orthopedists there. We all went to the first appointment planning

on

> just a consult in the beginning. In his office he started examining

> Bren's feet in great detail and educating us on what was going on

> physiologically with them. Then he started explaining about the

> Ponsetti Methhod! We just kind of dropped our jaws and stared at

him

> for a minute - then in unison our whole little family group

said 'You

> use the Ponsetti Method??!!!' He seemed equally shocked that we

were

> so educated about Ponsetti. He gave us a little more history on

> Dr.Ponsetti himself and explained that yes, he had trained,

certified,

> etc., with him. We told him when we did our search for someone who

> used this method we never saw his name on the list of registered

> doctors at IU and his team nurse practioner said she was going to

> find out why he was not listed because he should certainly be

there!

> Bren got her first set of casts that day - she was the only one

not to

> thrilled about being there. She will probably have 9-12 castings

and

> have the tendons lengthend along the way, the braces, etc. Dr.

Madigan

> said clubfoot was very rare in girls and for some reason equally

hard

> to correct in girls. By the end of the first appointment we were

all

> very impressed with him and his team. They were all terrific and

> really good with baby Bren. The only down part of this so far has

been

> that Bren was very jaundiced and of course that meant checking

blood

> several times. That meant several trips to the Children's Hospital

so

> someone very, very experienced could draw her blood. Yesterday she

got

> her second casting and same as with the first one she was grouchy

for

> about 24 hrs and then got over it. We are crossing our fingers that

> everything will go according to schedule but whether it does or not

> I'm sure we're going to but a lot of mileage on this board!

>

> Thanks everyone!

>

> Liz

> mim2g&b

>

> (and mother of johnna71

[Guest guest]

Congratulations!

I knew cf happened in boys more often that girls, but I don't think it's

accurate to say that cf is *rare* in girls nor that it is more difficult to

treat in girls.....is it? Those of you here with girls, what do you think?

Nine to 12 castings sounds rather extreme.... I dunno, I think I would remain

cautious of this doctor Ponseti trained or not for a while and see how it all

plays out.

s.

Dr. Madigan said clubfoot was very rare in girls and for some reason equally

hard

to correct in girls.

[Guest guest]

Congrats on the birth of your Granddaughter, Liz!

I agree w/ ee- statistically, it is more common in boys, and

statistically, it is more common to be bi-lateral versus uni-

lateral....but the fact that my daughter has uni-lateral clubfoot

isn't really " rare " , just not statistically as common as a bi-lateral

boy. I've always found it odd that there are so many " girl

clubfooters " here on our board knowing that the published statistics

note that more boys have clubfoot!

I haven't ever heard or read that it's more difficult to treat in

girls either.

I also agree that his initial assessment of 9-12 casts seems a bit

much. To paraphrase Dr. P: an average of 5-7 casts is required to

achieve correction and typically no more than 9 for very severe

cases.

Did your family get a chance to ask questions like: how many cases

this doctor has treated, what the average number of casts were, what

percentage of his patients relapsed, and have him explain the bracing

protocol (23 hrs/day for 3 mo. followed by 18 hrs/day eventually down

to 14 hrs/day when the baby is walking.)?

I hope that this doctor is using the method unaltered and is having

great success- but I agree that you should use caution at first.

Training with Dr. Ponseti himself is not a " guarantee " that the doctor

is following protocol properly......unfortunately. Just as being

listed on the " qualified physicians list " is not a guarantee.

Please keep us posted on Bren's progress!

& (3-16-00, left clubfoot)

> Congratulations!

> I knew cf happened in boys more often that girls, but I don't think

it's accurate to say that cf is *rare* in girls nor that it is more

difficult to treat in girls.....is it? Those of you here with girls,

what do you think? Nine to 12 castings sounds rather extreme.... I

dunno, I think I would remain cautious of this doctor Ponseti trained

or not for a while and see how it all plays out.

> s.

>

> Dr. Madigan said clubfoot was very rare in girls and for some reason

equally hard

> to correct in girls.

>

>

>

[Guest guest]

I am a female with bilateral clubfoot, with 2 young daughters born with

bilateral clubfoot. I am pretty sure we messed up those stats about boys!

www.pediatric-orthopedic-foundation.org

[Guest guest]

Hi Liz,

Congratulations on your new grandbaby! Sounds like a few on the group

have already voiced a few concerns with some of what your doctor had

stated. I just wanted to say that I would ask more questions also. My

daughter, is 5 now and we had her corrected by Dr. Ponseti

starting at the age of 5 months (we went through some less than

satisfactory correction here at home before we found Dr. Ponseti back

in 2000). had moderately severe bilateral feet at birth, by the

time we saw Dr. Ponseti, she was stiffer because 5 months of life had

already gone by and we got a late start to the method. Even after

that, we only had a total of 7 casts altogether, the 7th being the

casts after the tenotomy to each foot.

I had also thought girls weren't affected as much as males by what

the statistics say, but found it strange that so many little girls

are on this group. We have no history of clubfoot in our family, a

possible great grandmother with some sort of leg and/or foot problem

but nothing we have been able to find out for sure about.

It is wonderful that you have a whole family unit involved in this

little girl, we were also that fortunate and I can't tell you how

much of a difference it has made in and my husband and my (and

our other daughter)lives! My and my husbands families have been

through it all with us even when we felt we were going crazy with the

initial " wrong " treatment and stood behind us when we announced, " Um,

we are leaving for Iowa in 4 days to see a doctor there instead. "

All I can say is that if you ever feel any questions in your mind and

you want to be sure your doctor is following the Ponseti protocol,

you could always contact Dr. Ponseti himself for the reassurance.

Best of luck to your family, can't wait to hear about her progress.

Holly and (bilateral born:2-11-00 mod. severe, now 5 yrs. old.)

>

> My beautiful granddaughter arrived 3 weeks early on March 30! As

the

> ultrsound showed she does have pretty severe B/L clubfoot. After a

lot

> of searching and researching we finally found a doctor in Knoxville

> that trained with Dr. Ponsetti! It was quite by serendipity that we

> found him though. My granddaughter and her mom and dad were referred

> to Dr. Madigan at Knoxville Orthopedic Center, one of the 2

pediatric

> orthopedists there. We all went to the first appointment planning on

> just a consult in the beginning. In his office he started examining

> Bren's feet in great detail and educating us on what was going on

> physiologically with them. Then he started explaining about the

> Ponsetti Methhod! We just kind of dropped our jaws and stared at

him

> for a minute - then in unison our whole little family group

said 'You

> use the Ponsetti Method??!!!' He seemed equally shocked that we

were

> so educated about Ponsetti. He gave us a little more history on

> Dr.Ponsetti himself and explained that yes, he had trained,

certified,

> etc., with him. We told him when we did our search for someone who

> used this method we never saw his name on the list of registered

> doctors at IU and his team nurse practioner said she was going to

> find out why he was not listed because he should certainly be there!

> Bren got her first set of casts that day - she was the only one not

to

> thrilled about being there. She will probably have 9-12 castings and

> have the tendons lengthend along the way, the braces, etc. Dr.

Madigan

> said clubfoot was very rare in girls and for some reason equally

hard

> to correct in girls. By the end of the first appointment we were

all

> very impressed with him and his team. They were all terrific and

> really good with baby Bren. The only down part of this so far has

been

> that Bren was very jaundiced and of course that meant checking blood

> several times. That meant several trips to the Children's Hospital

so

> someone very, very experienced could draw her blood. Yesterday she

got

> her second casting and same as with the first one she was grouchy

for

> about 24 hrs and then got over it. We are crossing our fingers that

> everything will go according to schedule but whether it does or not

> I'm sure we're going to but a lot of mileage on this board!

>

> Thanks everyone!

>

> Liz

> mim2g&b

>

> (and mother of johnna71

[Guest guest]

CONGRATULATIONS!! I am sure she is beautiful!

She's here! Our April baby came in March

My beautiful granddaughter arrived 3 weeks early on March 30! As the

ultrsound showed she does have pretty severe B/L clubfoot. After a lot

of searching and researching we finally found a doctor in Knoxville

that trained with Dr. Ponsetti! It was quite by serendipity that we

found him though. My granddaughter and her mom and dad were referred

to Dr. Madigan at Knoxville Orthopedic Center, one of the 2 pediatric

orthopedists there. We all went to the first appointment planning on

just a consult in the beginning. In his office he started examining

Bren's feet in great detail and educating us on what was going on

physiologically with them. Then he started explaining about the

Ponsetti Methhod! We just kind of dropped our jaws and stared at him

for a minute - then in unison our whole little family group said 'You

use the Ponsetti Method??!!!' He seemed equally shocked that we were

so educated about Ponsetti. He gave us a little more history on

Dr.Ponsetti himself and explained that yes, he had trained, certified,

etc., with him. We told him when we did our search for someone who

used this method we never saw his name on the list of registered

doctors at IU and his team nurse practioner said she was going to

find out why he was not listed because he should certainly be there!

Bren got her first set of casts that day - she was the only one not to

thrilled about being there. She will probably have 9-12 castings and

have the tendons lengthend along the way, the braces, etc. Dr. Madigan

said clubfoot was very rare in girls and for some reason equally hard

to correct in girls. By the end of the first appointment we were all

very impressed with him and his team. They were all terrific and

really good with baby Bren. The only down part of this so far has been

that Bren was very jaundiced and of course that meant checking blood

several times. That meant several trips to the Children's Hospital so

someone very, very experienced could draw her blood. Yesterday she got

her second casting and same as with the first one she was grouchy for

about 24 hrs and then got over it. We are crossing our fingers that

everything will go according to schedule but whether it does or not

I'm sure we're going to but a lot of mileage on this board!

Thanks everyone!

Liz

mim2g&b

(and mother of johnna71

[Guest guest]

I know they say more boys than girls have clubfoot but I agree with Tracey

here. There seem to be alot of girls around with it also.

Re: She's here! Our April baby came in March

I am a female with bilateral clubfoot, with 2 young daughters born with

bilateral clubfoot. I am pretty sure we messed up those stats about boys!

www.pediatric-orthopedic-foundation.org

[Guest guest]

Congratulations!!!

liz hessen cltmstudio@...> wrote:

My beautiful granddaughter arrived 3 weeks early on March 30! As the

ultrsound showed she does have pretty severe B/L clubfoot. After a lot

of searching and researching we finally found a doctor in Knoxville

that trained with Dr. Ponsetti! It was quite by serendipity that we

found him though. My granddaughter and her mom and dad were referred

to Dr. Madigan at Knoxville Orthopedic Center, one of the 2 pediatric

orthopedists there. We all went to the first appointment planning on

just a consult in the beginning. In his office he started examining

Bren's feet in great detail and educating us on what was going on

physiologically with them. Then he started explaining about the

Ponsetti Methhod! We just kind of dropped our jaws and stared at him

for a minute - then in unison our whole little family group said 'You

use the Ponsetti Method??!!!' He seemed equally shocked that we were

so educated about Ponsetti. He gave us a little more history on

Dr.Ponsetti himself and explained that yes, he had trained, certified,

etc., with him. We told him when we did our search for someone who

used this method we never saw his name on the list of registered

doctors at IU and his team nurse practioner said she was going to

find out why he was not listed because he should certainly be there!

Bren got her first set of casts that day - she was the only one not to

thrilled about being there. She will probably have 9-12 castings and

have the tendons lengthend along the way, the braces, etc. Dr. Madigan

said clubfoot was very rare in girls and for some reason equally hard

to correct in girls. By the end of the first appointment we were all

very impressed with him and his team. They were all terrific and

really good with baby Bren. The only down part of this so far has been

that Bren was very jaundiced and of course that meant checking blood

several times. That meant several trips to the Children's Hospital so

someone very, very experienced could draw her blood. Yesterday she got

her second casting and same as with the first one she was grouchy for

about 24 hrs and then got over it. We are crossing our fingers that

everything will go according to schedule but whether it does or not

I'm sure we're going to but a lot of mileage on this board!

Thanks everyone!

Liz

mim2g&b

(and mother of johnna71

[Guest guest]

Just agreeing w/ ee and , 9 casts sounds like a lot; not to

disuade you in anyway, I would just say to keep up your guard to be

sure he is following protocol and that you are seeing improvement w/

each cast. This is essential, the method is very clear that you

should be able to see visual improvement w/ each casting. I would be

curious to see if his name comes up soon on the Ponseti approved list,

this could be a bit of a red flag, if he is claiming to be certified

but is not on the list I would really follow up on that.

Jenna (4/7/01) & Sam (9/25/04, RCF Dobbs brace 16-18/7)

> > Congratulations!

> > I knew cf happened in boys more often that girls, but I don't think

> it's accurate to say that cf is *rare* in girls nor that it is more

> difficult to treat in girls.....is it? Those of you here with girls,

> what do you think? Nine to 12 castings sounds rather extreme.... I

> dunno, I think I would remain cautious of this doctor Ponseti trained

> or not for a while and see how it all plays out.

> > s.

> >

> > Dr. Madigan said clubfoot was very rare in girls and for some reason

> equally hard

> > to correct in girls.

> >

> >

> >

[Guest guest]

Liz,

Congratulations on the arrival of your grandchild. I hope that all

goes well during her treatment. It is true that the ratio of

children with clubfoot is 2 boys for every 1 girl.

In case someone else has not already mentioned it, the Ponseti

method should only take 4-7 casts with about 5 being the average.

That your doctor mentioned 9-12 casts is something to be aware of.

Here is a link to a parent checklist for those going to someone

saying that they are using the Ponseti method.

http://members.tripod.com/ponseti_links-ivil/id13.html

and (3-17-99)

>

> My beautiful granddaughter arrived 3 weeks early on March 30! As

the

> ultrsound showed she does have pretty severe B/L clubfoot. After a

lot

> of searching and researching we finally found a doctor in Knoxville

> that trained with Dr. Ponsetti! It was quite by serendipity that

we

> found him though. My granddaughter and her mom and dad were

referred

> to Dr. Madigan at Knoxville Orthopedic Center, one of the 2

pediatric

> orthopedists there. We all went to the first appointment planning

on

> just a consult in the beginning. In his office he started examining

> Bren's feet in great detail and educating us on what was going on

> physiologically with them. Then he started explaining about the

> Ponsetti Methhod! We just kind of dropped our jaws and stared at

him

> for a minute - then in unison our whole little family group

said 'You

> use the Ponsetti Method??!!!' He seemed equally shocked that we

were

> so educated about Ponsetti. He gave us a little more history on

> Dr.Ponsetti himself and explained that yes, he had trained,

certified,

> etc., with him. We told him when we did our search for someone who

> used this method we never saw his name on the list of registered

> doctors at IU and his team nurse practioner said she was going to

> find out why he was not listed because he should certainly be

there!

> Bren got her first set of casts that day - she was the only one

not to

> thrilled about being there. She will probably have 9-12 castings

and

> have the tendons lengthend along the way, the braces, etc. Dr.

Madigan

> said clubfoot was very rare in girls and for some reason equally

hard

> to correct in girls. By the end of the first appointment we were

all

> very impressed with him and his team. They were all terrific and

> really good with baby Bren. The only down part of this so far has

been

> that Bren was very jaundiced and of course that meant checking

blood

> several times. That meant several trips to the Children's Hospital

so

> someone very, very experienced could draw her blood. Yesterday she

got

> her second casting and same as with the first one she was grouchy

for

> about 24 hrs and then got over it. We are crossing our fingers that

> everything will go according to schedule but whether it does or not

> I'm sure we're going to but a lot of mileage on this board!

>

> Thanks everyone!

>

> Liz

> mim2g&b

>

> (and mother of johnna71

[Guest guest]

Congrats on your granddaughter! What a great grandma you are to be

so involved regarding your granddaughter's treatment right from the

start.

I do think you should question this doctor more. It should not take

anymore than 9 casts ever to correct a VERY SEVERE clubfoot. If he

isn't on Dr.P's list then Dr. P may not of been impressed with the

pictures the doctor sent in and therefore did not certify him. Even

if he is certified you need to become completely eductated in the

Ponseti Method to question anything out of the norm. The first

question would be why would it take more than 9 casts when Dr. P

says the most severe can be corrected with 9 at the max. He may

understand the Ponseti Method, but not be that good at the

manipulations. We sought out a certified doctor that was altering

the method because he had been doing it for 3 years and thought he

could do it better. At the first alteration we were out of there and

onto our next doctor. Just beware and be educated. I think the

biggest red flag is when they detour from Dr.P's method.

>

> My beautiful granddaughter arrived 3 weeks early on March 30! As

the

> ultrsound showed she does have pretty severe B/L clubfoot. After a

lot

> of searching and researching we finally found a doctor in Knoxville

> that trained with Dr. Ponsetti! It was quite by serendipity that

we

> found him though. My granddaughter and her mom and dad were

referred

> to Dr. Madigan at Knoxville Orthopedic Center, one of the 2

pediatric

> orthopedists there. We all went to the first appointment planning

on

> just a consult in the beginning. In his office he started examining

> Bren's feet in great detail and educating us on what was going on

> physiologically with them. Then he started explaining about the

> Ponsetti Methhod! We just kind of dropped our jaws and stared at

him

> for a minute - then in unison our whole little family group

said 'You

> use the Ponsetti Method??!!!' He seemed equally shocked that we

were

> so educated about Ponsetti. He gave us a little more history on

> Dr.Ponsetti himself and explained that yes, he had trained,

certified,

> etc., with him. We told him when we did our search for someone who

> used this method we never saw his name on the list of registered

> doctors at IU and his team nurse practioner said she was going to

> find out why he was not listed because he should certainly be

there!

> Bren got her first set of casts that day - she was the only one

not to

> thrilled about being there. She will probably have 9-12 castings

and

> have the tendons lengthend along the way, the braces, etc. Dr.

Madigan

> said clubfoot was very rare in girls and for some reason equally

hard

> to correct in girls. By the end of the first appointment we were

all

> very impressed with him and his team. They were all terrific and

> really good with baby Bren. The only down part of this so far has

been

> that Bren was very jaundiced and of course that meant checking

blood

> several times. That meant several trips to the Children's Hospital

so

> someone very, very experienced could draw her blood. Yesterday she

got

> her second casting and same as with the first one she was grouchy

for

> about 24 hrs and then got over it. We are crossing our fingers that

> everything will go according to schedule but whether it does or not

> I'm sure we're going to but a lot of mileage on this board!

>

> Thanks everyone!

>

> Liz

> mim2g&b

>

> (and mother of johnna71