RE: Re: Dr Ponseti's reply about Kai

[Guest guest]

I agree if only because of the sheer volume of kids who are seen at Iowa

compared to how many seen by other clinics - greater numbers over the years

adding up to more experience - and it can't hurt to try there first.

s.

Re: Dr Ponseti's reply about Kai

Angel,

I'm sorry for the disappointing e-mail you recived. On a brighter

side my advice would be to go in person. I'm not sure if you

remember or not, I post to so many boards I don't know if I ever

mentioned it here or not. We actaully called and spoke with Dr.

Ponseti on the telephone twice in the last year, both times he said

we were in good hands with our doctor that he was great, etc and we

should trust him, etc. Plus we thought our doctor was probably

the " best " on the east coast etc. But we were still not settled on

the whole fixator, because there is like no long term research what

so ever. It's been done to less then 10 kids I think so far, last

time I heard it was like 7 or 8 I think. We just made the appoinment

and came. And got the best news, that it was really unnecessary to

put Collin through the over 1 year process, he will be fine in a few

months! I honestly think it is better to just come in person and let

them look. We knew we may get here and he would say the same thing

again, but as soon as he saw the medical records forwarded here, etc

and looked at Collin's feet we knew we were in the right place. I

just didn't want Collin to be an " experiment " unless there was

something backing it up, I know nothing in life is 100% gaurenteed

but the fixator doesn't even have a 10% one to me since theres no

research or studies, etc on the taylor spatial frame. I have also

heard of a child possibley relapsing after the fixator, so that makes

me think it may be a short term solution and a big experiment that is

only right for some kids, I don't think Collin's relapse was that

sever, etc in my opinion. Good Luck with Kai! I hope you can come

out to Iowa and bring Kai in person.

Michele

Collin's story at http://www.geocities.com/chele323232

[Guest guest]

Unforntunately, the cost has risen beyond reality to travel to IC ... tho if

it comes down to it, we will take him there before making any decisions on

surgery. I fully understand what you mean about sometimes needing to be

there in person. I corresponded with Dr P for 6 months - the whole time

with him telling that Kai was in the best of hand - until I was able to send

photos and he realized that something was very wrong and asked us to bring

Kai to him, which we did.

The difference now is that Dr Mosca understands the dynamics of what he is

dealing with (where he did not before) and there really ISNT anything

different that Dr Ponseti could do other than using long legs casts over

short leg cast. The only deformity left in the foot is cavus, so exterior

rotation is moot, and actually has the potential to make things worse. If

this set of manipulations doesnt work, I will ask Dr Mosca to try long-leg

casts, if for nothing else than to at least explore the possibility, but we

are really running out of things to do, and time - and as I said, we will go

to IC before consenting to surgery.

We have not given up yet, tho. At Kai's cast change Monday his foot looked

awsome - Dr Mosca finally attained a degree of correction we hadnt seen

since late fall '03 after Dr P casted.

Angel

Caitlen 8/29/97

Arica 8/22/01

Kai 12/31/02

----Original Message Follows----

Reply-To: nosurgery4clubfoot

To: nosurgery4clubfoot

Subject: Re: Dr Ponseti's reply about Kai

Date: Sun, 25 Sep 2005 20:24:43 -0000

Angel,

I'm sorry for the disappointing e-mail you recived. On a brighter

side my advice would be to go in person. I'm not sure if you

remember or not, I post to so many boards I don't know if I ever

mentioned it here or not. We actaully called and spoke with Dr.

Ponseti on the telephone twice in the last year, both times he said

we were in good hands with our doctor that he was great, etc and we

should trust him, etc. Plus we thought our doctor was probably

the " best " on the east coast etc. But we were still not settled on

the whole fixator, because there is like no long term research what

so ever. It's been done to less then 10 kids I think so far, last

time I heard it was like 7 or 8 I think. We just made the appoinment

and came. And got the best news, that it was really unnecessary to

put Collin through the over 1 year process, he will be fine in a few

months! I honestly think it is better to just come in person and let

them look. We knew we may get here and he would say the same thing

again, but as soon as he saw the medical records forwarded here, etc

and looked at Collin's feet we knew we were in the right place. I

just didn't want Collin to be an " experiment " unless there was

something backing it up, I know nothing in life is 100% gaurenteed

but the fixator doesn't even have a 10% one to me since theres no

research or studies, etc on the taylor spatial frame. I have also

heard of a child possibley relapsing after the fixator, so that makes

me think it may be a short term solution and a big experiment that is

only right for some kids, I don't think Collin's relapse was that

sever, etc in my opinion. Good Luck with Kai! I hope you can come

out to Iowa and bring Kai in person.

Michele

Collin's story at http://www.geocities.com/chele323232

[Guest guest]

Unforntunately, the cost has risen beyond reality to travel to IC ... tho if

it comes down to it, we will take him there before making any decisions on

surgery. I fully understand what you mean about sometimes needing to be

there in person. I corresponded with Dr P for 6 months - the whole time

with him telling that Kai was in the best of hand - until I was able to send

photos and he realized that something was very wrong and asked us to bring

Kai to him, which we did.

The difference now is that Dr Mosca understands the dynamics of what he is

dealing with (where he did not before) and there really ISNT anything

different that Dr Ponseti could do other than using long legs casts over

short leg cast. The only deformity left in the foot is cavus, so exterior

rotation is moot, and actually has the potential to make things worse. If

this set of manipulations doesnt work, I will ask Dr Mosca to try long-leg

casts, if for nothing else than to at least explore the possibility, but we

are really running out of things to do, and time - and as I said, we will go

to IC before consenting to surgery.

We have not given up yet, tho. At Kai's cast change Monday his foot looked

awsome - Dr Mosca finally attained a degree of correction we hadnt seen

since late fall '03 after Dr P casted.

Angel

Caitlen 8/29/97

Arica 8/22/01

Kai 12/31/02

----Original Message Follows----

Reply-To: nosurgery4clubfoot

To: nosurgery4clubfoot

Subject: Re: Dr Ponseti's reply about Kai

Date: Sun, 25 Sep 2005 20:24:43 -0000

Angel,

I'm sorry for the disappointing e-mail you recived. On a brighter

side my advice would be to go in person. I'm not sure if you

remember or not, I post to so many boards I don't know if I ever

mentioned it here or not. We actaully called and spoke with Dr.

Ponseti on the telephone twice in the last year, both times he said

we were in good hands with our doctor that he was great, etc and we

should trust him, etc. Plus we thought our doctor was probably

the " best " on the east coast etc. But we were still not settled on

the whole fixator, because there is like no long term research what

so ever. It's been done to less then 10 kids I think so far, last

time I heard it was like 7 or 8 I think. We just made the appoinment

and came. And got the best news, that it was really unnecessary to

put Collin through the over 1 year process, he will be fine in a few

months! I honestly think it is better to just come in person and let

them look. We knew we may get here and he would say the same thing

again, but as soon as he saw the medical records forwarded here, etc

and looked at Collin's feet we knew we were in the right place. I

just didn't want Collin to be an " experiment " unless there was

something backing it up, I know nothing in life is 100% gaurenteed

but the fixator doesn't even have a 10% one to me since theres no

research or studies, etc on the taylor spatial frame. I have also

heard of a child possibley relapsing after the fixator, so that makes

me think it may be a short term solution and a big experiment that is

only right for some kids, I don't think Collin's relapse was that

sever, etc in my opinion. Good Luck with Kai! I hope you can come

out to Iowa and bring Kai in person.

Michele

Collin's story at http://www.geocities.com/chele323232

[Guest guest]

Thanks . Every ounce of support helps at such a time.

At one time I consulted with many doctors - or tried at least. The only

ones who answered me were Dr son (Canada) and Dr (California) -

the latter is also an option we are open to, as he has great experience with

plantaris-type atypical. The bigger issue here is that we ALL know the

mechanics of the problem - but it still is not behaving in any semblance of

the expected manner! The incredibly stupid thing about all this is that Kai

has exceptionally flexible ligaments EVERYWHERE ELSE in his body, except

this one!

Angel

Caitlen 8/29/97

Arica 8/22/01

Kai 12/31/02

----Original Message Follows----

Reply-To: nosurgery4clubfoot

To: nosurgery4clubfoot

Subject: Re: Dr Ponseti's reply about Kai

Date: Mon, 26 Sep 2005 20:24:07 -0000

Angel,

I am so sorry, this is really difficult news. I know it is

disheartening, but perhaps taking Kai to Iowa would help. I think it

was Faith's Gabe that Dr. P was thinking was going to need surgery but

now, at their last check up he has changed his mind. And the idea

about going to see Dr. Pirani is good too. Have you ever consulted w/

Dr. Dobbs? Just getting a fresh perspective might be just what you

and Kai need. And above all, if Kai does need surgery, it will be

okay; you will know that you tried everything possible to avoid it.

Big hugs!

> I am floored and I think I am going to be ill. I sent Dr P a message

> detailing Kai's frequent relapses to see if he had and ideas ... I got

> his reply today (Saturday, I should have known it would be bad.) Here

> is what he said:

>

> " Kai is the only one with complex clubfoot deformities that I remember

> who has had so many relapses of the cavus. Most of these feet tend to

> get much better after one year of age and really their feet look

> normal. I don't know if we can do any more for Kai than what Dr. Mosca

> is doing. "

>

> He went on to say that if we wanted we could bring him to Iowa and he

> would try ... but that was it.

>

> What are we going to do if it keeps relapsing?? I guess we will have

> to consider having lengthenings done on the tendon and ligament that

> are so problematic. I have known that it was possible ... but seeing

> it from Dr P himself that he knows nothing like it and implying -

> without actually saying so - that surgery is the next step ... oh god.

[Guest guest]

Thanks . Every ounce of support helps at such a time.

At one time I consulted with many doctors - or tried at least. The only

ones who answered me were Dr son (Canada) and Dr (California) -

the latter is also an option we are open to, as he has great experience with

plantaris-type atypical. The bigger issue here is that we ALL know the

mechanics of the problem - but it still is not behaving in any semblance of

the expected manner! The incredibly stupid thing about all this is that Kai

has exceptionally flexible ligaments EVERYWHERE ELSE in his body, except

this one!

Angel

Caitlen 8/29/97

Arica 8/22/01

Kai 12/31/02

----Original Message Follows----

Reply-To: nosurgery4clubfoot

To: nosurgery4clubfoot

Subject: Re: Dr Ponseti's reply about Kai

Date: Mon, 26 Sep 2005 20:24:07 -0000

Angel,

I am so sorry, this is really difficult news. I know it is

disheartening, but perhaps taking Kai to Iowa would help. I think it

was Faith's Gabe that Dr. P was thinking was going to need surgery but

now, at their last check up he has changed his mind. And the idea

about going to see Dr. Pirani is good too. Have you ever consulted w/

Dr. Dobbs? Just getting a fresh perspective might be just what you

and Kai need. And above all, if Kai does need surgery, it will be

okay; you will know that you tried everything possible to avoid it.

Big hugs!

> I am floored and I think I am going to be ill. I sent Dr P a message

> detailing Kai's frequent relapses to see if he had and ideas ... I got

> his reply today (Saturday, I should have known it would be bad.) Here

> is what he said:

>

> " Kai is the only one with complex clubfoot deformities that I remember

> who has had so many relapses of the cavus. Most of these feet tend to

> get much better after one year of age and really their feet look

> normal. I don't know if we can do any more for Kai than what Dr. Mosca

> is doing. "

>

> He went on to say that if we wanted we could bring him to Iowa and he

> would try ... but that was it.

>

> What are we going to do if it keeps relapsing?? I guess we will have

> to consider having lengthenings done on the tendon and ligament that

> are so problematic. I have known that it was possible ... but seeing

> it from Dr P himself that he knows nothing like it and implying -

> without actually saying so - that surgery is the next step ... oh god.