Re: Fwd: RE: Clarification on bracing for 3yo Portland Shriners patient

[Guest guest]

Hi Kori

Did they do the scoring on Darbi's foot when she was born?? I just wondered

why you thought she was 'mild' because looking at her piccies her foot looks

more severe than Connor's and he was scored a 'full house' where he got 6 in

everything so presumably he was severe although his feet are fine now of

course. We also have this problem with the time scale. Our Physio is

thinking 3.5 - 4 years but it doesn't seem like there is a guarantee for any

length of time and if they are going to relapse then they will anyway -

dilemma!!!!!

Rach, Steve & Connor

-- Fwd: RE: Clarification on bracing for 3yo

Portland Shriners patient

So I wrote Dr. Morcende asking for clarification on bracing term for

Darbi to take to her appointment this Friday. I sent him a ton of

pics, will fwd those to the CFPics list here in a bit. But this is

the reply I received.

Looks like we're in it for the long haul despite her mild

diagnosis... hummm... oh well. I kinda thought so.

When I replied I asked what I should do if they refused to continue

to treat her and I couldn't get a script for new shoes. He said he

would be happy to write a script for her should that happen. Right on!!!

He was VERY prompt in replying, like 5-10 min prompt! Both times. What a

guy!

Kori

>Dear family:

>thank you very much for your email and thank you for giving us

>information about the Shriners in portland. You pointed out many of

>the problems that we are facing now, mostly, doctors that like to

>make changes thinking that they can improve the method. It is very

> " natural " for human beeings....althouhg in this case, it took Dr.

>Ponseti 50 years to get were we are...

>

>Now, with respect to her feet, they look splendid ! really very,

>very nice. I do not hink you should be worry about the shape. They

>look great. The curly toes is a little bit a different problem, not

>connected witht he clubfoot, just coincidental. Taping/bracing is an

>option, although sometimes as she grows, it may get better on thier

>own. In any case, there will be no physical limitations with tehm

>even if they do not correct (other that a little bit of cosmetics..).

>

>With regards to the brace, I just finished a study evaluating all

>patients in the last 50 years (we are actaully writing the paper

>now). Relpases can be seen up to the age of 10 years of age,

>although they are very rare this late. the numbers you should

>remember are: 95% chance of relapse chance in 1st year of life (if

>no brace); 70-80% in 2nd year; 30-40% in 3th year, 10-15% at 4th

>year, and 5% afterwards until 10 or so. Unfortunately, there are no

>signs that will help us to know who is going to relapse or not. So,

>we recommend to use the brace 10-12 h/day as long as possible, even

>getting to the 5th year (if the kid tolerates it).

>

>Thank you again for your input. it is very helpful. Please, keep me

>posted witht her progress.

>

>best

>jose morcuende