Re: Dr Ponseti's reply about Kai

[Guest guest]

Oh honey.....that's rotten. OK - so what is the next step Dr. Ponseti would

recommend trying? What kind of surgery are you talking about?

s.

Dr Ponseti's reply about Kai

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]

Angel,

We are so sorry to hear your news! I would encourage you to contact

Dr. Pirani in Vancouver, not to say that he would have a miracle cure

for Kai but he does have extensive experience in dealing with older

kids. He discovered the method a decade ago but before that preformed

surgery as a method of correction, I really think he might have some

valuable input!!!

Angel, you have versed yourself so well in the medical language

regarding Kai's foot, I am sure you would be able explain to Dr.

Pirani exactally what is going on with Kai's foot, why not contact

him for his opinion, what can it hurt??

& Grace

> 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]

Oh Angel, I'm sorry. If you can get to Iowa and have him reevaluated, at least

you'll know you did absolutely everything you could... I'm sure it pained him to

respond with such bad news. Is Kai in 's? I know it's probably a stupid

question...

angelmommy23 wrote: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]

That was the worst, I think. He HAD NO next step to try There

was only one sentence in the message after what I posted. Over the

next few months I think we will be gathering more info from the

doctors - alot of them dang it! - and see what we come up with.

Angel

> Oh honey.....that's rotten. OK - so what is the next step Dr.

Ponseti would recommend trying? What kind of surgery are you talking

about?

> s.

>

> Dr Ponseti's reply about Kai

>

>

> 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]

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]

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]

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.