RE: Re: parents with older kids

[Guest guest]

Thanks for the input guys. We are off to see Dr. Colburn in a few weeks and

I am sure he will reassure me. I just wondered what others have been told.

I am amazed at how some of the doctors have their own version of the

Ponseti method. Why mess with a good thing?

Thanks again

Tonya and (bcf)

San Diego, CA

_____

From: shelleylapp

Sent: Friday, September 24, 2004 10:39 AM

To: nosurgery4clubfoot

Subject: Re: parents with older kids

Tonya,

Evan is 4 and has been out of the FAB since age 2 (too early, on

doctor's advice but that's another story!) and we have been lucky

enough not to have had a relapse. He still has good dorsiflexion,

but our dr. advised us to do heel cord stretches as it is " slightly "

tight. He took great care, though, to show us how to do it so as not

to cause further problems such as rocker bottom or breaking the

arch. We are definitely not to push up on his toes. We are to put

the palm of our hand on his heel and tilt the whole foot up that

way. We start with the knee bent and then slowly straighten it out

to get a better stretch. I know Dr. Ponseti doesn't include

stretching in any post-FAB instructions because of the rocker bottom

etc. so we proceed VERY carefully indeed. We've been doing this

since early June and I can tell you his dorsiflexion is definitely

better than it was. He can pull his foot up almost as far as I can

pull mine now. And he is very proud of that!!

and Evan (8-17-00)

> > We wanted to say thank you for all the responses from you and

your

> > group. It was wonderful hearing from so many obviously

concerned

> > and proactive people. It is apparent from the tone of many of

the

> > responses that there is both a certain amount of disbelief about

> > our " claims " and that Dr. Ponseti has a very strong following in

> > your group. While the Ponseti method is certainly an outstanding

> > advancement over earlier treatments, our orthosis represents a

new

> > direction in the treatment of clubfoot and ITT that builds on his

> > work and we have dozens and dozens of parents who will tell you

> that

> > the results have exceeded all expectations.

> >

> > The orthosis that we have developed is the direct result of our

> > frustration with the inadequacies of traditional bracing and

> > surgical options. It sounds like we all agree that neither

> approach

> > offers ideal outcomes. Once the original concept was conceived

we

> > worked for two years with a wide range of infants and young

> children

> > to develop and refine an orthosis that would combine the best

> > features of the stretching and casting techniques currently in

use

> > while avoiding the pitfalls and discomfort of traditional bracing

> > (or the pain and deformities associated with surgery). Our goal

> was

> > to develop an orthosis that would ultimately replace surgery for

> > many children and provide a low cost alternative to serial

casting

> > and subsequent orthotic management. We are running clinical

> trials

> > on the product of this research. Success, parent satisfaction

and

> > patient compliance have been phenomenal and we have high hopes

> that

> > we may ultimately be able to offer an alternative to parents and

> > orthopedists that is actually an improvement over current

> > protocols.

> >

> > Although the specific design of the orthosis must remain

> proprietary

> > at this time (while awaiting patent protection) I wanted to

> provide

> > responses to some of the concerns raised by your group:

> >

> > 1) This is not the Poinsettia method. Although I am very

> > familiar with this technique and applaud his pioneering work, my

> > intent is to incorporate what is correct about that method and

> > utilize those principles in a different way.

> >

> > 2) The orthosis incorporates ongoing, full time, stretching

of

> > the foot and lower extremity that allows for gentle, gradual

> change

> > as though someone were actively manipulating the foot all of the

> > time.

> >

> > 3) The orthosis is removable to allow for ongoing inspection

> of

> > the skin and to avoid infection and tissue breakdown as occurs

> > occasionally with casting.

> >

> > 4) Depending on growth we find that typically the initial

> > positioning orthosis continues to fit appropriately during the

> first

> > several weeks and that there is then a transition to a dynamic

> > correctional orthosis that is outgrown every 3-4 months during

the

> > first year and every 4-6 months during later years. (The design

> of

> > the orthosis allows for volume changes in the limb as well as

long

> > bone growth.)

> >

> > 5) Donning, positioning and patient compliance have been

> > exceptional: one of the strongest attributes of this brace is

> that

> > is allows for movement of the lower extremity in all three

planes,

> > which is critical to acceptance. We find that even donning the

> > orthosis for first time infants can comfortably tolerate 3-4 n-m

> of

> > rotational force without discomfort, often they appear to not

> > even " notice " the orthosis. There is also a built in sensory

> > feedback that encourages relaxing into the corrected position

that

> > appears to assist in the children's acceptance.

> >

> > 6) Long term follow up data is not yet available as we have

> only

> > been working with children for 2 years but we have several

> children

> > who have relapsed following casting or surgery and who have

> > therefore required renewed treatment at age 2 to 2 1/2 . These

> > children have done very well with nighttime wear of the orthosis

> > (limited ambulation is possible in the brace). I have treated

> > children as old as 4.

> >

> > 7) The beauty about trialing this orthosis is that we have

> > ongoing inspection of the foot and at any time the treatment can

> > revert to other modalities if so desired.

> >

> > We commend you all on taking such an active role in your

> > children's care, too often people are afraid to challenge the

> status

> > quo, particularly in medicine. Please know that we are on the

> same

> > page as regards that: we have suffered through " traditional "

> > treatments with too many wonderful kids and worked with to many

> > crippled adults not to want to do every thing possible to advance

> > the treatment of this problem. That is the motivation for this

> > research. I hope that if any one is interested in being

> considered

> > for this clinical trial that they will contact us so that we can

> > arrange an appointment to discuss specifics in greater depth.

> Thank

> > you again for your time and interest.

>

>

>

>