Re: Kai's #2 (or #11 depending on how you look at it!) cast is on!

[Guest guest]

wonderful news Angel! That is so cool about Dr. Mosca. I wonder if

Sussman will be contacting him, I did give him some information about Kai's

foot and how Dr. Mosca and Dr. Ponseti have been working together to keep

him corrected. I gave him the link to your website and Dr. Mosca's

information. If you can remember, next you see him ask if he's been

contacted by anyone down here.

Do you know how to get a transcript of Dr. Morcuende's presentation or

perhaps the paper itself? When was the PONSA meeting? I'd love to send

that onto Sussman as well.

Also, Kai's probably one of the largest footed babies in the M/P brace,

what do you think about Darbi giving it a try if will make her a

pair? She's in a 5-1/2-6 in regular shoes and a 4 in the Markells right

now. Her foot growth seems to have slowed some too. The toe section is a

lot more open and I'm thinking it might let her toes go back

straight. Thoughts?

Didn't you say that the Plantaris only shows up after the tenotomy? Is

this the same with the other types of atypical CF or just the

Plantaris? Being there are more cases showing up, have they looked into

the idea that more Dr's are doing Ponseti type casting and perhaps it has

something to do with that? Not that they're all doing it wrong, but with

more babies being treated this way, it shows up early or something and thus

the rate is going to be higher? And who knows how many feet treated with

surgery are/were atypical? I'm sure it presents differently after surgical

correction.

Very interesting. Thanks for the update and let's hope this is the last

casting he'll have to go through. :~}

kori

At 12:00 PM 3/1/2005, you wrote:

>Everything went well and Dr Mosca had a great time telling his trainee

>about Kai's foot and how you must over correct the cavus - " which is

>something you absolutely would NOT do in an average cf " - and advising on

>the decision to use knee casts instead of long casts " ONLY do this for a

>walking age child who has most aspects of correction still present, never

>durring initial correction! " Also, he was avid on having us show the

>trainee the /Ponseti brace and telling about and what

>dedication and love goes into these shoes :-)

>

>He also told us that, while Dr Ponseti missed the recent meeting (PONSA

>was it ?), which he has never done, that Dr Morcuende presented the

>paper on atypical clubfoot! He said he was very excited to hear it ..

>like a little kid " That's my patients! I have patients with this! " lol

>

>Sam, the cast tech, also told us something that confirms something Dr

>Ponseti told me last year ... that for a long time they rarely saw

>atypical clubfoot ... maybe once a year or less ... and now they are

>seeing alot more of it for reasons unknown.

>

>All in all it was a great appt and a great opportunity to show one more

>emerging doc that the Ponseti Method can work in even the most difficult

>of cases (YEAH!) Kai will wear this cast for 2 weeks, then we will take

>it off and send photos to Dr Mosca. We are, of course, back on the 3

>month check up schedule so will be going back in late April/early May.

>

>Angel

>

>

[Guest guest]

" wonderful news Angel! That is so cool about Dr. Mosca. I wonder if Sussman

will be contacting him, I did give him some information about Kai's foot and how

Dr. Mosca and Dr. Ponseti have been working together to keep him corrected. I

gave him the link to your website and Dr. Mosca's

information. If you can remember, next you see him ask if he's been contacted

by anyone down here. "

We can always hope! You know, before I went to Iowa I e-mailed the doctors

there at Portland Shriners, and none of them ever got back to me .. it left me

rather unimpressed. I mean, here is a parent contacting you asking if you can

help and you don't even have the time to answer back yes or no???

For all of the " learning " mistakes Dr Mosca has made with Kai, he has still been

wonderful. He has answered every e-mail, has taken the time to learn, and above

all, has had the humbleness to admit when he was wrong, did not have all the

info, or simply to thank us, as parents, for working so hard to help in his

education on this subject.

" Do you know how to get a transcript of Dr. Morcuende's presentation or perhaps

the paper itself? When was the PONSA meeting? I'd love to send that onto

Sussman as well. "

Check with . He usually either has them or knows where to find them. I

am not certain it was a PONSA meeting (Dr Mosca did not specify) but I figure it

probably was. I would love to see the paper as well! I could use it on my web

site.

" Also, Kai's probably one of the largest footed babies in the M/P brace, what do

you think about Darbi giving it a try if will make her a pair? ... The

toe section is a lot more open and I'm thinking it might let her toes go back

straight. Thoughts? "

Not sure, but I bet if you told him what the problem was he probably would.

Since he pretty much makes them custom, it should not be a problem for him to

make a pair for Darby. I bet it would help with her toes ... just a question on

if you guys want to pay out that amount for it ;-)

" Didn't you say that the Plantaris only shows up after the tenotomy? Is this

the same with the other types of atypical CF or just the Plantaris? Being there

are more cases showing up, have they looked into the idea that more Dr's are

doing Ponseti type asting and perhaps it has something to do with that? Not

that they're all doing it wrong, but with more babies being treated this way, it

shows up early or something and thus the rate is going to be higher? And who

knows how many feet treated with surgery are/were atypical? I'm sure it

presents differently after surgical correction. "

It had been the case that it did not become apparent until after the tenotomy,

but Dr Ponseti and others have since found that there are signs present at

birth, or at least part way thru correction prior to tenotomy, that point to

atypical. For one, the creases on the bottom of the foot and at the heel are

present at birth. Also, the cavus is far worse at birth than average. I do

believe that part of it has been new recognition, and part of it is simply the

way it goes. It is true with alot of things that they won't be seen for a long

time, then there will be a cluster, then not as many again. It is weird, but

true! Also, Dr Mosca admits to having surgically corrected at least 3 cases of

plantaris-type atypical clubfoot prior to Kai and Sadie's cases, so yes, I do

believe that many of these cases did result in surgery in the past.

Thanks for the good wishes! We are crossing our fingers, but still realize that

we may run into problems again durring the 3-year growth spurt.

[Guest guest]

At 01:05 PM 3/1/2005, you wrote:

>Not sure, but I bet if you told him what the problem was he probably

>would. Since he pretty much makes them custom, it should not be a problem

>for him to make a pair for Darby. I bet it would help with her toes ...

>just a question on if you guys want to pay out that amount for it

I'm thinking it'll be something we can apply toward the pre-tax money

they're taking out of dh's check now. Gotta get it the money out somehow

over the next year... may as well get a nice pair of shoes out of

it. Plus I have a feeling I may be able to persuade my MIL to help out

with it. If I tell her about the toes, and how much the brace costs I bet

it'll make her crazy enough to offer up some assistance.

Not that I'm complaining, but I do know that Shriners pays for AFO's for

kids all the time (and apparently fairly consistent since they're not

really using FAB's anymore there anyway). And they told me they cost about

2K. So exactly why they wouldn't help out with a not quite $400 brace I am

not sure. I am more than grateful for their care of Darbi, and that we

don't have to pay for shoes. But come on... even if they started putting

all their CF babies into the M/P brace they'd still be saving a ton of $

versus AFO's.

Kori

[Guest guest]

Well thats good news, hope this cast does the trick! Interesting

about the increased cases of atypical.

& Grace

> Everything went well and Dr Mosca had a great time telling his

trainee about Kai's foot and how you must over correct the cavus -

" which is something you absolutely would NOT do in an average cf " -

and advising on the decision to use knee casts instead of long

casts " ONLY do this for a walking age child who has most aspects of

correction still present, never durring initial correction! " Also,

he was avid on having us show the trainee the /Ponseti brace

and telling about and what dedication and love goes into these

shoes :-)

>

> He also told us that, while Dr Ponseti missed the recent meeting

(PONSA was it ?), which he has never done, that Dr Morcuende

presented the paper on atypical clubfoot! He said he was very

excited to hear it .. like a little kid " That's my patients! I have

patients with this! " lol

>

> Sam, the cast tech, also told us something that confirms something

Dr Ponseti told me last year ... that for a long time they rarely saw

atypical clubfoot ... maybe once a year or less ... and now they are

seeing alot more of it for reasons unknown.

>

> All in all it was a great appt and a great opportunity to show one

more emerging doc that the Ponseti Method can work in even the most

difficult of cases (YEAH!) Kai will wear this cast for 2 weeks, then

we will take it off and send photos to Dr Mosca. We are, of course,

back on the 3 month check up schedule so will be going back in late

April/early May.

>

> Angel

>

>