RE: I talked to Dr. Ponseti yesterday....(m)

[Guest guest]

Jen,

Best of luck on your trip. I will say a prayer for your family that all does

go well. Have you tried Angel Flights to fly? They might be of some help,

they use small aircrafts and land at smaller airports but as far as I know

they do not charge any fees for use only medical transportation. They do

have a websit too. Angel Flights.com I think.

Take it easy , Kathy and son Zachary

[Guest guest]

Jen,

Best of luck on your trip. I will say a prayer for your family that all does

go well. Have you tried Angel Flights to fly? They might be of some help,

they use small aircrafts and land at smaller airports but as far as I know

they do not charge any fees for use only medical transportation. They do

have a websit too. Angel Flights.com I think.

Take it easy , Kathy and son Zachary

[Guest guest]

Jen,

Best of luck on your trip. I will say a prayer for your family that all does

go well. Have you tried Angel Flights to fly? They might be of some help,

they use small aircrafts and land at smaller airports but as far as I know

they do not charge any fees for use only medical transportation. They do

have a websit too. Angel Flights.com I think.

Take it easy , Kathy and son Zachary

[Guest guest]

I am sorry to hear that things arent working out right, but remember

that you have been able to catch this early, and it will be taken

care of. I know this is a no surgery web site, but in the long run,

if you do have to go through the surgery, that is better than not

being able to fix things. I know all kids react differently,

but...we had the tenotomy done as a surgical procedure, and I know

that at 3 months exactly, Mikey bounced back that evening. Granted

he was a little miserable, but I know now that it was the best thing

for him.

Are you comfortable with what your doctor has done so far? If you

are then there is nothing wrong with the doctor. It could be

perhaps that your doctor was following the Ponseti method to the

tee, and her particular clubfoot just didnt respond to the therapy.

It can happen. As we all know, anything can happen at any time. I

dont think you should be upset with the doctor. I am sure he did

the best he could.

As for you, things will work out. As hard as it seems right now, and

I know I was angry when some one told me that, at some point, you

will be able to look back and sigh with relief that this is done.

Take the trip to Iowa. I know I would if I could or had to. I wish

I would have done it earlier. If you go to Iowa, remember that

whatever they say, they are the experts, and they will fix things

for you.

Jenn and Mikey 9-12-01

> We are going to Iowa on March 11. He will be out of the office

for

> the next week, but said that one of the other doctors will be

doing

> his casting. He thinks we can do this in one or two casts and

> another tenotomy. He also said that he thought that Dr.

Talwalkar's

> techniques were good, but her foot was just too bad. I took that

to

> mean that Dr. Talwalkar just doesn't have the experience yet to

> handle a case as bad as Olivia's. I asked him about going back to

> Dr. Talwalkar after the tenotomy for the brace and he said that

would

> be fine.

>

> I have to say that I'm scared. Up to this point we always had the

> option of going to Iowa if this didn't work, but were hopeful that

it

> would. Now we're at the last resort. If this doesn't work then

it's

> surgery. I know that surgery is not the great evil that I've

built

> it up to be in my mind, but we've done so much to try to avoid

it.

> I'm also scared that Dr. Ponseti won't be able to correct it and

I'll

> have to know the rest of my life that it may have worked if we had

> just gone sooner.

>

> Well, there's no point in worrying about things that may not come

to

> be. I'm going to think positively and watch Dr. Ponseti work a

> miracle!

>

> Thank you all so much for your support! I called the National

> Patient Travel Line yesterday and they gave me numbers for several

> different organizations that may have been able to help us with

> flying. I called them all yesterday, but they all said that they

> need more advance notice. We will have to drive at least the

first

> and second trip. We thought about just staying out there until it

> was done, but neither of us can afford to take that much unpaid

leave

> from work and we've pretty much used up our paid leave with the

trips

> to Kentucky.

>

> Wish us luck and if you're a praying person, please say a prayer

that

> all goes well.

>

> Jen

[Guest guest]

I am sorry to hear that things arent working out right, but remember

that you have been able to catch this early, and it will be taken

care of. I know this is a no surgery web site, but in the long run,

if you do have to go through the surgery, that is better than not

being able to fix things. I know all kids react differently,

but...we had the tenotomy done as a surgical procedure, and I know

that at 3 months exactly, Mikey bounced back that evening. Granted

he was a little miserable, but I know now that it was the best thing

for him.

Are you comfortable with what your doctor has done so far? If you

are then there is nothing wrong with the doctor. It could be

perhaps that your doctor was following the Ponseti method to the

tee, and her particular clubfoot just didnt respond to the therapy.

It can happen. As we all know, anything can happen at any time. I

dont think you should be upset with the doctor. I am sure he did

the best he could.

As for you, things will work out. As hard as it seems right now, and

I know I was angry when some one told me that, at some point, you

will be able to look back and sigh with relief that this is done.

Take the trip to Iowa. I know I would if I could or had to. I wish

I would have done it earlier. If you go to Iowa, remember that

whatever they say, they are the experts, and they will fix things

for you.

Jenn and Mikey 9-12-01

> We are going to Iowa on March 11. He will be out of the office

for

> the next week, but said that one of the other doctors will be

doing

> his casting. He thinks we can do this in one or two casts and

> another tenotomy. He also said that he thought that Dr.

Talwalkar's

> techniques were good, but her foot was just too bad. I took that

to

> mean that Dr. Talwalkar just doesn't have the experience yet to

> handle a case as bad as Olivia's. I asked him about going back to

> Dr. Talwalkar after the tenotomy for the brace and he said that

would

> be fine.

>

> I have to say that I'm scared. Up to this point we always had the

> option of going to Iowa if this didn't work, but were hopeful that

it

> would. Now we're at the last resort. If this doesn't work then

it's

> surgery. I know that surgery is not the great evil that I've

built

> it up to be in my mind, but we've done so much to try to avoid

it.

> I'm also scared that Dr. Ponseti won't be able to correct it and

I'll

> have to know the rest of my life that it may have worked if we had

> just gone sooner.

>

> Well, there's no point in worrying about things that may not come

to

> be. I'm going to think positively and watch Dr. Ponseti work a

> miracle!

>

> Thank you all so much for your support! I called the National

> Patient Travel Line yesterday and they gave me numbers for several

> different organizations that may have been able to help us with

> flying. I called them all yesterday, but they all said that they

> need more advance notice. We will have to drive at least the

first

> and second trip. We thought about just staying out there until it

> was done, but neither of us can afford to take that much unpaid

leave

> from work and we've pretty much used up our paid leave with the

trips

> to Kentucky.

>

> Wish us luck and if you're a praying person, please say a prayer

that

> all goes well.

>

> Jen

[Guest guest]

Jenn,

So many of us that had used another method before Dr. Ponseti know exactly

what you are feeling right now. I could say everything you wrote in the

second paragraph were my feelings word for word a year and a half ago. We at

that point only had a 50/50 chance of Dr. Ponseti's method working since

was already 5 months old and we were so scared but hopeful at the same

time. I too felt that pain that if I had just known sooner we could have

saved ourselves so much confusion, pain, grief and not to mention time.The

guilt we felt when we found out there was this method out in Iowa was

horrible because at that point in time they were saying it usually only

worked on babies 3 months or less, we felt we were too late. The point is,

you can't look at it that way, you did the best you could at the time and

again, you are doing the best you can now. I too wanted desperately to avoid

surgery and it was staring me in the face for nearly 5 whole months because

's feet were too stiff and stubborn for the traditional method to work,

the only method of choice when she was born.

Upon going to Iowa I learned that if it were possible for 's feet to be

corrected by them, then if god forbid she still had a relapse one day in the

future the worst surgery she should need would be the tendon transfer. This

surgery was by far much less invasive than the surgery we were facing here

in Michigan, the release of her tendons and ligaments in both feet. Although

the thought of any surgery did'nt thrill me, I was much more comfortable

with the description that Dr. Ponseti gave me about the tendon transfer and

that it was a last resort.

Olivia has been using the Ponseti method since birth, that is a huge plus

for her and I know that Dr. Ponseti's team will do everything they possibly

can to get Olivia's feet corrected and one thing I did'nt worry about going

to Iowa was that they would'nt " push " her feet farther than they were ready

to go each week. For us, that meant one extra cast before tenotomy

(origionally she needed 4-5, we ended up with 6 and the tenotomy on each

foot), maybe a bit of an inconvenience and another drive for us out there,

but very well worth it.

Take it all one day at a time, once you get there and meet the doctors you

will feel a real sense of being in excellent hands and I know that will make

you feel much better!

Take care,

Holly and

I talked to Dr. Ponseti yesterday....(m)

>We are going to Iowa on March 11. He will be out of the office for

>the next week, but said that one of the other doctors will be doing

>his casting. He thinks we can do this in one or two casts and

>another tenotomy. He also said that he thought that Dr. Talwalkar's

>techniques were good, but her foot was just too bad. I took that to

>mean that Dr. Talwalkar just doesn't have the experience yet to

>handle a case as bad as Olivia's. I asked him about going back to

>Dr. Talwalkar after the tenotomy for the brace and he said that would

>be fine.

>

>I have to say that I'm scared. Up to this point we always had the

>option of going to Iowa if this didn't work, but were hopeful that it

>would. Now we're at the last resort. If this doesn't work then it's

>surgery. I know that surgery is not the great evil that I've built

>it up to be in my mind, but we've done so much to try to avoid it.

>I'm also scared that Dr. Ponseti won't be able to correct it and I'll

>have to know the rest of my life that it may have worked if we had

>just gone sooner.

>

>Well, there's no point in worrying about things that may not come to

>be. I'm going to think positively and watch Dr. Ponseti work a

>miracle!

>

>Thank you all so much for your support! I called the National

>Patient Travel Line yesterday and they gave me numbers for several

>different organizations that may have been able to help us with

>flying. I called them all yesterday, but they all said that they

>need more advance notice. We will have to drive at least the first

>and second trip. We thought about just staying out there until it

>was done, but neither of us can afford to take that much unpaid leave

>from work and we've pretty much used up our paid leave with the trips

>to Kentucky.

>

>Wish us luck and if you're a praying person, please say a prayer that

>all goes well.

>

>Jen

>

>

>

>

[Guest guest]

Jenn,

So many of us that had used another method before Dr. Ponseti know exactly

what you are feeling right now. I could say everything you wrote in the

second paragraph were my feelings word for word a year and a half ago. We at

that point only had a 50/50 chance of Dr. Ponseti's method working since

was already 5 months old and we were so scared but hopeful at the same

time. I too felt that pain that if I had just known sooner we could have

saved ourselves so much confusion, pain, grief and not to mention time.The

guilt we felt when we found out there was this method out in Iowa was

horrible because at that point in time they were saying it usually only

worked on babies 3 months or less, we felt we were too late. The point is,

you can't look at it that way, you did the best you could at the time and

again, you are doing the best you can now. I too wanted desperately to avoid

surgery and it was staring me in the face for nearly 5 whole months because

's feet were too stiff and stubborn for the traditional method to work,

the only method of choice when she was born.

Upon going to Iowa I learned that if it were possible for 's feet to be

corrected by them, then if god forbid she still had a relapse one day in the

future the worst surgery she should need would be the tendon transfer. This

surgery was by far much less invasive than the surgery we were facing here

in Michigan, the release of her tendons and ligaments in both feet. Although

the thought of any surgery did'nt thrill me, I was much more comfortable

with the description that Dr. Ponseti gave me about the tendon transfer and

that it was a last resort.

Olivia has been using the Ponseti method since birth, that is a huge plus

for her and I know that Dr. Ponseti's team will do everything they possibly

can to get Olivia's feet corrected and one thing I did'nt worry about going

to Iowa was that they would'nt " push " her feet farther than they were ready

to go each week. For us, that meant one extra cast before tenotomy

(origionally she needed 4-5, we ended up with 6 and the tenotomy on each

foot), maybe a bit of an inconvenience and another drive for us out there,

but very well worth it.

Take it all one day at a time, once you get there and meet the doctors you

will feel a real sense of being in excellent hands and I know that will make

you feel much better!

Take care,

Holly and

I talked to Dr. Ponseti yesterday....(m)

>We are going to Iowa on March 11. He will be out of the office for

>the next week, but said that one of the other doctors will be doing

>his casting. He thinks we can do this in one or two casts and

>another tenotomy. He also said that he thought that Dr. Talwalkar's

>techniques were good, but her foot was just too bad. I took that to

>mean that Dr. Talwalkar just doesn't have the experience yet to

>handle a case as bad as Olivia's. I asked him about going back to

>Dr. Talwalkar after the tenotomy for the brace and he said that would

>be fine.

>

>I have to say that I'm scared. Up to this point we always had the

>option of going to Iowa if this didn't work, but were hopeful that it

>would. Now we're at the last resort. If this doesn't work then it's

>surgery. I know that surgery is not the great evil that I've built

>it up to be in my mind, but we've done so much to try to avoid it.

>I'm also scared that Dr. Ponseti won't be able to correct it and I'll

>have to know the rest of my life that it may have worked if we had

>just gone sooner.

>

>Well, there's no point in worrying about things that may not come to

>be. I'm going to think positively and watch Dr. Ponseti work a

>miracle!

>

>Thank you all so much for your support! I called the National

>Patient Travel Line yesterday and they gave me numbers for several

>different organizations that may have been able to help us with

>flying. I called them all yesterday, but they all said that they

>need more advance notice. We will have to drive at least the first

>and second trip. We thought about just staying out there until it

>was done, but neither of us can afford to take that much unpaid leave

>from work and we've pretty much used up our paid leave with the trips

>to Kentucky.

>

>Wish us luck and if you're a praying person, please say a prayer that

>all goes well.

>

>Jen

>

>

>

>

[Guest guest]

Jenn,

So many of us that had used another method before Dr. Ponseti know exactly

what you are feeling right now. I could say everything you wrote in the

second paragraph were my feelings word for word a year and a half ago. We at

that point only had a 50/50 chance of Dr. Ponseti's method working since

was already 5 months old and we were so scared but hopeful at the same

time. I too felt that pain that if I had just known sooner we could have

saved ourselves so much confusion, pain, grief and not to mention time.The

guilt we felt when we found out there was this method out in Iowa was

horrible because at that point in time they were saying it usually only

worked on babies 3 months or less, we felt we were too late. The point is,

you can't look at it that way, you did the best you could at the time and

again, you are doing the best you can now. I too wanted desperately to avoid

surgery and it was staring me in the face for nearly 5 whole months because

's feet were too stiff and stubborn for the traditional method to work,

the only method of choice when she was born.

Upon going to Iowa I learned that if it were possible for 's feet to be

corrected by them, then if god forbid she still had a relapse one day in the

future the worst surgery she should need would be the tendon transfer. This

surgery was by far much less invasive than the surgery we were facing here

in Michigan, the release of her tendons and ligaments in both feet. Although

the thought of any surgery did'nt thrill me, I was much more comfortable

with the description that Dr. Ponseti gave me about the tendon transfer and

that it was a last resort.

Olivia has been using the Ponseti method since birth, that is a huge plus

for her and I know that Dr. Ponseti's team will do everything they possibly

can to get Olivia's feet corrected and one thing I did'nt worry about going

to Iowa was that they would'nt " push " her feet farther than they were ready

to go each week. For us, that meant one extra cast before tenotomy

(origionally she needed 4-5, we ended up with 6 and the tenotomy on each

foot), maybe a bit of an inconvenience and another drive for us out there,

but very well worth it.

Take it all one day at a time, once you get there and meet the doctors you

will feel a real sense of being in excellent hands and I know that will make

you feel much better!

Take care,

Holly and

I talked to Dr. Ponseti yesterday....(m)

>We are going to Iowa on March 11. He will be out of the office for

>the next week, but said that one of the other doctors will be doing

>his casting. He thinks we can do this in one or two casts and

>another tenotomy. He also said that he thought that Dr. Talwalkar's

>techniques were good, but her foot was just too bad. I took that to

>mean that Dr. Talwalkar just doesn't have the experience yet to

>handle a case as bad as Olivia's. I asked him about going back to

>Dr. Talwalkar after the tenotomy for the brace and he said that would

>be fine.

>

>I have to say that I'm scared. Up to this point we always had the

>option of going to Iowa if this didn't work, but were hopeful that it

>would. Now we're at the last resort. If this doesn't work then it's

>surgery. I know that surgery is not the great evil that I've built

>it up to be in my mind, but we've done so much to try to avoid it.

>I'm also scared that Dr. Ponseti won't be able to correct it and I'll

>have to know the rest of my life that it may have worked if we had

>just gone sooner.

>

>Well, there's no point in worrying about things that may not come to

>be. I'm going to think positively and watch Dr. Ponseti work a

>miracle!

>

>Thank you all so much for your support! I called the National

>Patient Travel Line yesterday and they gave me numbers for several

>different organizations that may have been able to help us with

>flying. I called them all yesterday, but they all said that they

>need more advance notice. We will have to drive at least the first

>and second trip. We thought about just staying out there until it

>was done, but neither of us can afford to take that much unpaid leave

>from work and we've pretty much used up our paid leave with the trips

>to Kentucky.

>

>Wish us luck and if you're a praying person, please say a prayer that

>all goes well.

>

>Jen

>

>

>

>

[Guest guest]

Jen,

As another person suggested, call Angel Flights. I would think

they'd be able to at least 'try' to fit you in. I think there's

others' here who have gone with them on short notice.

http://www.angel-flight.org/

1-

I'd call them ASAP though. Their offices are located in Virginia.

All of the doctors in Iowa are excellent. I'm sure just being there

will give you a sense of comfort. I can understand your worries

about Livie needing surgery. I suppose it's always a possibility.

But I think it's also a GOOD possibility that the docs in Iowa will

be able to take care of the situation without more surgery than a

tenotomy.

Let us know if you get through to Angel Flights.

Lori and Annika

(and from the 'other' Olivia)

[Guest guest]

Jen,

As another person suggested, call Angel Flights. I would think

they'd be able to at least 'try' to fit you in. I think there's

others' here who have gone with them on short notice.

http://www.angel-flight.org/

1-

I'd call them ASAP though. Their offices are located in Virginia.

All of the doctors in Iowa are excellent. I'm sure just being there

will give you a sense of comfort. I can understand your worries

about Livie needing surgery. I suppose it's always a possibility.

But I think it's also a GOOD possibility that the docs in Iowa will

be able to take care of the situation without more surgery than a

tenotomy.

Let us know if you get through to Angel Flights.

Lori and Annika

(and from the 'other' Olivia)

[Guest guest]

Jen,

As another person suggested, call Angel Flights. I would think

they'd be able to at least 'try' to fit you in. I think there's

others' here who have gone with them on short notice.

http://www.angel-flight.org/

1-

I'd call them ASAP though. Their offices are located in Virginia.

All of the doctors in Iowa are excellent. I'm sure just being there

will give you a sense of comfort. I can understand your worries

about Livie needing surgery. I suppose it's always a possibility.

But I think it's also a GOOD possibility that the docs in Iowa will

be able to take care of the situation without more surgery than a

tenotomy.

Let us know if you get through to Angel Flights.

Lori and Annika

(and from the 'other' Olivia)

[Guest guest]

Jen,

I'm sorry to hear about Olivia's foot, but you'll be in great hands!!

Can't wait to hear how everything goes.

Joy

http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

[Guest guest]

Jen,

I'm sorry to hear about Olivia's foot, but you'll be in great hands!!

Can't wait to hear how everything goes.

Joy

http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

[Guest guest]

Jen,

I'm sorry to hear about Olivia's foot, but you'll be in great hands!!

Can't wait to hear how everything goes.

Joy

http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

[Guest guest]

Hi

I am also in the UK and have a veteran 9 year old who was born with severe

bilateral club feet which appear to be secondary to a mild form of spina

bifida which showed up on an MRI scan. She has had all the conventional

treatment, which has been successful for her left foot but not for her right

which is frankly still a mess! We have been told that the next stage

involves bony surgery which makes me very anxious..I follow the discussions

here but did not feel they had much to offer Hannah because of her age. I

was interested to read your doctors comments and wondered who he or she is?

We have been considering a second opinion before going for the next round of

surgery but when we have looked elsewhere before we got a very similar

opinion from our surgeons.and don't mind travelling. It sounds as thoug your

Dr has a different perspective which would be interesting.We already go from

the Isle of Wight to London for treatment so we don't mind travelling!

Best wishes

Alison (mum to Hannah who has bilateral CF born 25.11.1992)

[Guest guest]

Hi

I am also in the UK and have a veteran 9 year old who was born with severe

bilateral club feet which appear to be secondary to a mild form of spina

bifida which showed up on an MRI scan. She has had all the conventional

treatment, which has been successful for her left foot but not for her right

which is frankly still a mess! We have been told that the next stage

involves bony surgery which makes me very anxious..I follow the discussions

here but did not feel they had much to offer Hannah because of her age. I

was interested to read your doctors comments and wondered who he or she is?

We have been considering a second opinion before going for the next round of

surgery but when we have looked elsewhere before we got a very similar

opinion from our surgeons.and don't mind travelling. It sounds as thoug your

Dr has a different perspective which would be interesting.We already go from

the Isle of Wight to London for treatment so we don't mind travelling!

Best wishes

Alison (mum to Hannah who has bilateral CF born 25.11.1992)

[Guest guest]

Mark,

I can remember 5 other internet parents who first went to a Ponseti

method doctor at about 18 months or older (although there may be

others). Three of the children had already previously had the

clubfoot surgery and were dealing with relapsing problems and the

other 2 were being told by their local doctors that the clubfoot

surgery was needed. At least 2 or 3 of those parents are still

active on the internet where you could talk to them about their

experience. One of those parents just barely left a message about

their experience at the Parentsplace site but that site is not

working correctly this morning. She was very positive about their

experience with the anterior tibial tendon transfer (ATTT) and their

child had not had a prior clubfoot surgery. Once it is operating,

their message is somewhere close to the bottom of

http://boards2.parentsplace.com/messages/get/ppclubfoot58.html?

outline=-1

I believe that all of those children were recasted and then had the

anterior tibial tendon transfer (ATTT). Dr. Ponseti's recent U of

Iowa study mentioned a child at 22 months of age.

The tendon transfer is done if they are confident that the regular

clubfoot surgery is not needed. There are some (only a very few)

Ponseti method children for whom the actual clubfoot surgery is the

only alternative. For children who have to have the clubfoot

surgery, the Ponseti method greatly reduces the extent of what needs

to be done. There are a few still photos of the tendon tranfer

surgery in Dr. Ponseti's book but I can't remember any photos on the

internet. Dr. Ponseti also has a video of the ATTT on a 1973 video

and it looks relatively simple compared to the regular clubfoot

surgery. I have a copy of that video and could make a PAL version to

mail to you if you want to see it. A Dr. Feldman of NYU had written a

letter to pediatricians in the New York City area about 2 years ago

where he described the ATTT as " This surgery is minimal compared to

the typical surgery done currently " .

http://groups.yahoo.com/group/nosurgery4clubfoot/files/FeldmanPediatri

cianltr.doc

As far as doctors, you are probably aware that 2 doctors from

Manchester have recently switched over to the Ponseti method. But

they are relatively new to it and may not have seen many older

children for whom they have tried the method. I think that Dr. de

Kiewit is the most experienced in the Ponseit method in the UK.

Their is also a lady named Christie who is at the TalipesUK

site whose child had a prior surgery and then went to Dr. de Kiewit

because of a relapse. I believe that her child was about 4 years old

had the ATTT and could tell you of their experience.

http://groups.yahoo.com/group/talipesuk/message/596

I have to go. Best wishes.

and (3-17-99)

>

> I have a little boy Sam who is just over two and was born with bi-

lateral club foot. In the UK the standard treatment is a " soft

tissue " release. Our doctor was of the view that what ever may be

done the feet will " do their own thing " and that surgery would

probably be inevitable.

>

> He confirmed this a few months ago and we thought at that point

that it would be prudent to go for a second opinion which confirmed

our doctor's view.

>

> It was only at this very late stage that I started to research

matters on the internet and came across this site. Egbert very

kindly gave some of his time and it culminated in me emailing Dr

Ponseti direct, who responded the following day!

>

> Notwithstanding the fact that Sam is 2 he is of the view that the

Ponseti method still has a good deal to offer and that although a

tendon transfer will almost certainly be required it is far

preferable to this full " soft tissue " release with its long term

damaging effects.

>

> We are now doing a 300 mile round trip every week to see a doctor

who is " Ponseti Approved " and also fully aware of other non operative

procedures such as the French Method.

>

> Sorry for rambling on but the above leads me to the following :-

>

> 1. Age of Child - our doctor is of the view that it is never too

late and has treated children post full tissue release and even

adults. Patently the success will not be as noted but it is better

than the alternatives. recently posted a report which stated

that Ponseti is certainly partially effective up to 18 months and I

am hoping that Sam will prove even later. Does any body else have

examples of children starting treatment long after birth?

>

> 2. Tendon Transfer - it would appear that the worst Ponseti

scenario is this procedure rather than the soft tissue release. Am I

correct? On the basis that I am is anyone aware of any downside to

it? I am also told that a tendon transfer is more akin to a procedure

than an operation and is relatively minor. Is this true or is it one

of the nurses trying to make me feel better?

>

> 3. United Kingdom - I am not sure how many people in the UK read

this site but would be interested to know. I have carried out quite a

bit of research on Ponseti doctors over here and putting it bluntly

there really is only one.

>

> Any responses would be gratefully appreciated.

>

> Sam and Mark.

>

>

>

> >>> jconsider@n... 27/02/2002 14:13:43 >>>

>

>

>

>

> ==================================================

> Cobbetts, Ship Canal House, King Street, Manchester, M2 4WB,

> England. Telephone: +44 ; Fax: +44 .

> www.cobbetts.co.uk

>

> This firm is authorised by the Law Society to conduct investment

> business.

> ==================================================

[Guest guest]

Mark,

I can remember 5 other internet parents who first went to a Ponseti

method doctor at about 18 months or older (although there may be

others). Three of the children had already previously had the

clubfoot surgery and were dealing with relapsing problems and the

other 2 were being told by their local doctors that the clubfoot

surgery was needed. At least 2 or 3 of those parents are still

active on the internet where you could talk to them about their

experience. One of those parents just barely left a message about

their experience at the Parentsplace site but that site is not

working correctly this morning. She was very positive about their

experience with the anterior tibial tendon transfer (ATTT) and their

child had not had a prior clubfoot surgery. Once it is operating,

their message is somewhere close to the bottom of

http://boards2.parentsplace.com/messages/get/ppclubfoot58.html?

outline=-1

I believe that all of those children were recasted and then had the

anterior tibial tendon transfer (ATTT). Dr. Ponseti's recent U of

Iowa study mentioned a child at 22 months of age.

The tendon transfer is done if they are confident that the regular

clubfoot surgery is not needed. There are some (only a very few)

Ponseti method children for whom the actual clubfoot surgery is the

only alternative. For children who have to have the clubfoot

surgery, the Ponseti method greatly reduces the extent of what needs

to be done. There are a few still photos of the tendon tranfer

surgery in Dr. Ponseti's book but I can't remember any photos on the

internet. Dr. Ponseti also has a video of the ATTT on a 1973 video

and it looks relatively simple compared to the regular clubfoot

surgery. I have a copy of that video and could make a PAL version to

mail to you if you want to see it. A Dr. Feldman of NYU had written a

letter to pediatricians in the New York City area about 2 years ago

where he described the ATTT as " This surgery is minimal compared to

the typical surgery done currently " .

http://groups.yahoo.com/group/nosurgery4clubfoot/files/FeldmanPediatri

cianltr.doc

As far as doctors, you are probably aware that 2 doctors from

Manchester have recently switched over to the Ponseti method. But

they are relatively new to it and may not have seen many older

children for whom they have tried the method. I think that Dr. de

Kiewit is the most experienced in the Ponseit method in the UK.

Their is also a lady named Christie who is at the TalipesUK

site whose child had a prior surgery and then went to Dr. de Kiewit

because of a relapse. I believe that her child was about 4 years old

had the ATTT and could tell you of their experience.

http://groups.yahoo.com/group/talipesuk/message/596

I have to go. Best wishes.

and (3-17-99)

>

> I have a little boy Sam who is just over two and was born with bi-

lateral club foot. In the UK the standard treatment is a " soft

tissue " release. Our doctor was of the view that what ever may be

done the feet will " do their own thing " and that surgery would

probably be inevitable.

>

> He confirmed this a few months ago and we thought at that point

that it would be prudent to go for a second opinion which confirmed

our doctor's view.

>

> It was only at this very late stage that I started to research

matters on the internet and came across this site. Egbert very

kindly gave some of his time and it culminated in me emailing Dr

Ponseti direct, who responded the following day!

>

> Notwithstanding the fact that Sam is 2 he is of the view that the

Ponseti method still has a good deal to offer and that although a

tendon transfer will almost certainly be required it is far

preferable to this full " soft tissue " release with its long term

damaging effects.

>

> We are now doing a 300 mile round trip every week to see a doctor

who is " Ponseti Approved " and also fully aware of other non operative

procedures such as the French Method.

>

> Sorry for rambling on but the above leads me to the following :-

>

> 1. Age of Child - our doctor is of the view that it is never too

late and has treated children post full tissue release and even

adults. Patently the success will not be as noted but it is better

than the alternatives. recently posted a report which stated

that Ponseti is certainly partially effective up to 18 months and I

am hoping that Sam will prove even later. Does any body else have

examples of children starting treatment long after birth?

>

> 2. Tendon Transfer - it would appear that the worst Ponseti

scenario is this procedure rather than the soft tissue release. Am I

correct? On the basis that I am is anyone aware of any downside to

it? I am also told that a tendon transfer is more akin to a procedure

than an operation and is relatively minor. Is this true or is it one

of the nurses trying to make me feel better?

>

> 3. United Kingdom - I am not sure how many people in the UK read

this site but would be interested to know. I have carried out quite a

bit of research on Ponseti doctors over here and putting it bluntly

there really is only one.

>

> Any responses would be gratefully appreciated.

>

> Sam and Mark.

>

>

>

> >>> jconsider@n... 27/02/2002 14:13:43 >>>

>

>

>

>

> ==================================================

> Cobbetts, Ship Canal House, King Street, Manchester, M2 4WB,

> England. Telephone: +44 ; Fax: +44 .

> www.cobbetts.co.uk

>

> This firm is authorised by the Law Society to conduct investment

> business.

> ==================================================

[Guest guest]

Mark,

The Parentsplace site is now working, although you may have to join

to be able to read the messages. Marci left her message about the

ATTT at

http://boards2.parentsplace.com/messages/get/ppclubfoot58/55.html

She indicated that she would be willing to discuss it all by e-mail

with anyone interested. Her e-mail address is mmessick @ ifmc.org

and (3-17-99)

> >

> > I have a little boy Sam who is just over two and was born with bi-

> lateral club foot. In the UK the standard treatment is a " soft

> tissue " release. Our doctor was of the view that what ever may be

> done the feet will " do their own thing " and that surgery would

> probably be inevitable.

> >

> > He confirmed this a few months ago and we thought at that point

> that it would be prudent to go for a second opinion which confirmed

> our doctor's view.

> >

> > It was only at this very late stage that I started to research

> matters on the internet and came across this site. Egbert

very

> kindly gave some of his time and it culminated in me emailing Dr

> Ponseti direct, who responded the following day!

> >

> > Notwithstanding the fact that Sam is 2 he is of the view that the

> Ponseti method still has a good deal to offer and that although a

> tendon transfer will almost certainly be required it is far

> preferable to this full " soft tissue " release with its long term

> damaging effects.

> >

> > We are now doing a 300 mile round trip every week to see a doctor

> who is " Ponseti Approved " and also fully aware of other non

operative

> procedures such as the French Method.

> >

> > Sorry for rambling on but the above leads me to the following :-

> >

> > 1. Age of Child - our doctor is of the view that it is never too

> late and has treated children post full tissue release and even

> adults. Patently the success will not be as noted but it is better

> than the alternatives. recently posted a report which stated

> that Ponseti is certainly partially effective up to 18 months and I

> am hoping that Sam will prove even later. Does any body else have

> examples of children starting treatment long after birth?

> >

> > 2. Tendon Transfer - it would appear that the worst Ponseti

> scenario is this procedure rather than the soft tissue release. Am

I

> correct? On the basis that I am is anyone aware of any downside to

> it? I am also told that a tendon transfer is more akin to a

procedure

> than an operation and is relatively minor. Is this true or is it

one

> of the nurses trying to make me feel better?

> >

> > 3. United Kingdom - I am not sure how many people in the UK read

> this site but would be interested to know. I have carried out quite

a

> bit of research on Ponseti doctors over here and putting it bluntly

> there really is only one.

> >

> > Any responses would be gratefully appreciated.

> >

> > Sam and Mark.

> >

> >

> >

> > >>> jconsider@n... 27/02/2002 14:13:43 >>>

> >

> >

> >

> >

> > ==================================================

> > Cobbetts, Ship Canal House, King Street, Manchester, M2 4WB,

> > England. Telephone: +44 ; Fax: +44 .

> > www.cobbetts.co.uk

> >

> > This firm is authorised by the Law Society to conduct investment

> > business.

> > ==================================================

[Guest guest]

Mark,

The Parentsplace site is now working, although you may have to join

to be able to read the messages. Marci left her message about the

ATTT at

http://boards2.parentsplace.com/messages/get/ppclubfoot58/55.html

She indicated that she would be willing to discuss it all by e-mail

with anyone interested. Her e-mail address is mmessick @ ifmc.org

and (3-17-99)

> >

> > I have a little boy Sam who is just over two and was born with bi-

> lateral club foot. In the UK the standard treatment is a " soft

> tissue " release. Our doctor was of the view that what ever may be

> done the feet will " do their own thing " and that surgery would

> probably be inevitable.

> >

> > He confirmed this a few months ago and we thought at that point

> that it would be prudent to go for a second opinion which confirmed

> our doctor's view.

> >

> > It was only at this very late stage that I started to research

> matters on the internet and came across this site. Egbert

very

> kindly gave some of his time and it culminated in me emailing Dr

> Ponseti direct, who responded the following day!

> >

> > Notwithstanding the fact that Sam is 2 he is of the view that the

> Ponseti method still has a good deal to offer and that although a

> tendon transfer will almost certainly be required it is far

> preferable to this full " soft tissue " release with its long term

> damaging effects.

> >

> > We are now doing a 300 mile round trip every week to see a doctor

> who is " Ponseti Approved " and also fully aware of other non

operative

> procedures such as the French Method.

> >

> > Sorry for rambling on but the above leads me to the following :-

> >

> > 1. Age of Child - our doctor is of the view that it is never too

> late and has treated children post full tissue release and even

> adults. Patently the success will not be as noted but it is better

> than the alternatives. recently posted a report which stated

> that Ponseti is certainly partially effective up to 18 months and I

> am hoping that Sam will prove even later. Does any body else have

> examples of children starting treatment long after birth?

> >

> > 2. Tendon Transfer - it would appear that the worst Ponseti

> scenario is this procedure rather than the soft tissue release. Am

I

> correct? On the basis that I am is anyone aware of any downside to

> it? I am also told that a tendon transfer is more akin to a

procedure

> than an operation and is relatively minor. Is this true or is it

one

> of the nurses trying to make me feel better?

> >

> > 3. United Kingdom - I am not sure how many people in the UK read

> this site but would be interested to know. I have carried out quite

a

> bit of research on Ponseti doctors over here and putting it bluntly

> there really is only one.

> >

> > Any responses would be gratefully appreciated.

> >

> > Sam and Mark.

> >

> >

> >

> > >>> jconsider@n... 27/02/2002 14:13:43 >>>

> >

> >

> >

> >

> > ==================================================

> > Cobbetts, Ship Canal House, King Street, Manchester, M2 4WB,

> > England. Telephone: +44 ; Fax: +44 .

> > www.cobbetts.co.uk

> >

> > This firm is authorised by the Law Society to conduct investment

> > business.

> > ==================================================

[Guest guest]

Hi Sam and Mark

I live in the uk and my son is being treated weekly at Sunderland for severe

bilateral Talipes (It takes us 6 hrs to travel there - but we think it has

been well worth the journey) Our Doctor is Gavin DeKeweit and is brilliant.

He is using the Ponsetti Method. My son is six weeks old now and on plaster

cast no.5. At the moment Mr DeKeweit is trying to stretch the tendons within

the cast. We have a 50% chance of a tendon operation. Most of the tendons

seem to have stretched but there is one that doesn't seem to have stretched

as well as the others.

I wish you all the luck with your son

Becca

[Guest guest]

Hi Alison

I read your latest posting and you come from the same area as me. I have a

six week old boy with severe bilateral talipes. We pushed the doctors here to

refer us to the Ponsetti doctor Gavin De Keiweit in Sunderland rather than

use the surgical route. If you want to know about travelling etc. from where

you live or our experiences please e-mail me at Becca1cam@...

[Guest guest]

Many thanks for your email. We also see Gavin DeKeweit and are also very

impressed. As it only takes three hours for us to get to Sunderland I shall

remember not to moan to my wife on the next visit!

Re: I talked to Dr. Ponseti yesterday....(m)

Hi Sam and Mark

I live in the uk and my son is being treated weekly at Sunderland for severe

bilateral Talipes (It takes us 6 hrs to travel there - but we think it has

been well worth the journey) Our Doctor is Gavin DeKeweit and is brilliant.

He is using the Ponsetti Method. My son is six weeks old now and on plaster

cast no.5. At the moment Mr DeKeweit is trying to stretch the tendons within

the cast. We have a 50% chance of a tendon operation. Most of the tendons

seem to have stretched but there is one that doesn't seem to have stretched

as well as the others.

I wish you all the luck with your son

Becca

[Guest guest]

As you will see from my last posting the doctor is Gavin DeKeweit who is a

consultant at Sunderland Royal Hospital. He is well known to this group and the

UK Club Foot support group (Steps based in Lymm, Cheshire). We only came to Mr

DeKiewet after a second opinion from Great Ormond Street, which told us nothing

new and who at present have no useful experience of the Ponseti Method.

Please note that Mr DeKeweit did not make the comments but is information that I

have picked up on from my discussions with hospital staff..

If you do take matters further you will not be the first parents to visit from

the Isle of Wight.

Regards.

Mark and Sam.

Re: I talked to Dr. Ponseti yesterday....(m)

Hi

I am also in the UK and have a veteran 9 year old who was born with severe

bilateral club feet which appear to be secondary to a mild form of spina

bifida which showed up on an MRI scan. She has had all the conventional

treatment, which has been successful for her left foot but not for her right

which is frankly still a mess! We have been told that the next stage

involves bony surgery which makes me very anxious..I follow the discussions

here but did not feel they had much to offer Hannah because of her age. I

was interested to read your doctors comments and wondered who he or she is?

We have been considering a second opinion before going for the next round of

surgery but when we have looked elsewhere before we got a very similar

opinion from our surgeons.and don't mind travelling. It sounds as thoug your

Dr has a different perspective which would be interesting.We already go from

the Isle of Wight to London for treatment so we don't mind travelling!

Best wishes

Alison (mum to Hannah who has bilateral CF born 25.11.1992)

[Guest guest]

Many thanks for your helpful messages and I shall certainly email Marci to find

out more about her experiences.

You will see from the site that one or two UK parents responded, although less

than I would have hoped for.

Many thanks for the offer of the video but I shall pass on this occasion on the

basis that I would not really know what I'm looking at!

So that I am clear, I take it that the " regular clubfoot surgery " is what I have

referred to as a " soft tissue release " . If not perhaps you could let me know.

Just in case any one in the UK wishes to know the two Manchester doctors are

based at Booth Hall. They can be contacted via Mr Day's secretary, although as

said things are very much in the early stages.

We have infact recently spoken to Christie and her experience of The

Ponseti Method/Mr deKiewit and the ATTT at a late stage are very positive. If

any body wishes to talk to her she can be contacted through Steps.

Mark and Sam.

Re: I talked to Dr. Ponseti yesterday....(m)

Mark,

The Parentsplace site is now working, although you may have to join

to be able to read the messages. Marci left her message about the

ATTT at

http://boards2.parentsplace.com/messages/get/ppclubfoot58/55.html

She indicated that she would be willing to discuss it all by e-mail

with anyone interested. Her e-mail address is mmessick @ ifmc.org

and (3-17-99)

> >

> > I have a little boy Sam who is just over two and was born with bi-

> lateral club foot. In the UK the standard treatment is a " soft

> tissue " release. Our doctor was of the view that what ever may be

> done the feet will " do their own thing " and that surgery would

> probably be inevitable.

> >

> > He confirmed this a few months ago and we thought at that point

> that it would be prudent to go for a second opinion which confirmed

> our doctor's view.

> >

> > It was only at this very late stage that I started to research

> matters on the internet and came across this site. Egbert

very

> kindly gave some of his time and it culminated in me emailing Dr

> Ponseti direct, who responded the following day!

> >

> > Notwithstanding the fact that Sam is 2 he is of the view that the

> Ponseti method still has a good deal to offer and that although a

> tendon transfer will almost certainly be required it is far

> preferable to this full " soft tissue " release with its long term

> damaging effects.

> >

> > We are now doing a 300 mile round trip every week to see a doctor

> who is " Ponseti Approved " and also fully aware of other non

operative

> procedures such as the French Method.

> >

> > Sorry for rambling on but the above leads me to the following :-

> >

> > 1. Age of Child - our doctor is of the view that it is never too

> late and has treated children post full tissue release and even

> adults. Patently the success will not be as noted but it is better

> than the alternatives. recently posted a report which stated

> that Ponseti is certainly partially effective up to 18 months and I

> am hoping that Sam will prove even later. Does any body else have

> examples of children starting treatment long after birth?

> >

> > 2. Tendon Transfer - it would appear that the worst Ponseti

> scenario is this procedure rather than the soft tissue release. Am

I

> correct? On the basis that I am is anyone aware of any downside to

> it? I am also told that a tendon transfer is more akin to a

procedure

> than an operation and is relatively minor. Is this true or is it

one

> of the nurses trying to make me feel better?

> >

> > 3. United Kingdom - I am not sure how many people in the UK read

> this site but would be interested to know. I have carried out quite

a

> bit of research on Ponseti doctors over here and putting it bluntly

> there really is only one.

> >

> > Any responses would be gratefully appreciated.

> >

> > Sam and Mark.

> >

> >

> >

> > >>> jconsider@n... 27/02/2002 14:13:43 >>>

> >

> >

> >

> >

> > ==================================================

> > Cobbetts, Ship Canal House, King Street, Manchester, M2 4WB,

> > England. Telephone: +44 ; Fax: +44 .

> > www.cobbetts.co.uk

> >

> > This firm is authorised by the Law Society to conduct investment

> > business.

> > ==================================================