parents with older kids

[Guest guest]

Hi All

I have a question for the parents who have older kids. A local doctor is

interested in doing the Ponseti method and heard that our son had it done

and requested to see him this week. He was supper impressed. He had lots

of questions for me but one I couldn’t answer…..

is now 3½ and has been out of his DBB’s for about four months. Has

anyone been told that once they stop wearing the shoes that the parent

should actively participate in stretching their child’s feet. The idea I

got was that I should be concerned about the calf muscle shortening so I

should stretch his feet by pushing on my sons toes.

This was something that our regular doctor has not mentioned to us, but I

wondered if anyone else had any feedback regarding this idea.

Thanks

Tonya and (bcf)

San Diego, CA

Dr. Colburn

_____

From: Egbert

Sent: Tuesday, September 21, 2004 9:51 PM

To: nosurgery4clubfoot

Subject: Re: Alternative Conservative Treatment

Chad,

You need to realize that many of us had been with prior methods of

treatment before finding out about the Ponseti method. For us, the

use of the Ponseti method was simple in that our sons feet were then

correctly positioned in 2 weeks, then with a 3 week tenotomy cast.

I believe that the initial correction with the Ponseti method is

much quicker than the 4 months you indicate your orthosis takes.

As indicated, we may be a bit more willing to consider an

orthosis that we have not seen and that has no real documented long

term trackrecord if you would submit it to Dr. Ponseti for his

consideration as a retention devise first. I think that Dr. Ponseti

would be glad to review your orthosis and listen to your explanation

as to why it would work.

We are willing to consider that new possibilities may exist for

methods of retention and new methods of treatment, but we are not

willing to encourage new parents to be part of what at this point

could be considered to be somewhat part of an " experiment " . When

you are willing to provide us with photo's of your orthosis and send

one to Dr. Ponseti for him to examine and give his opinion, we will

be more open to discuss it without the wariness that we now have.

Also, in an earlier message, I had asked you some questions that you

had not answered. I would like to ask them again.

Since your group is located in Portland, Maine; do you have a group

of doctors there or elsewhere who are utilizing your method. Or is

your treatment done completely by orthotists without utilizing a

doctor? Can you give us the names and contact information for those

doctors?

From the POSNA website which lists most but not all of the Ped

Orthos in the U.S., there are 3 ped orthos in Bangor, Maine which is

125 miles North of you, 3 in Concord N.H. (100 miles southwest) and

25 ped orthos in Boston which is also 100 miles south. You had

mentioned that you had 3 doctors who are utilizing this modification

of the Ponseti method. Are they in one of these groups?

http://www.posna.org/index

Can you provide us with information on the studies that have been

done with your method, the rates of short and long term relapses and

longer term outcomes? Is there anything published yet by doctors

that we can read on the internet or get elsewhere?

You mentioned that the DKAFO is low cost. Can you tell us what the

costs of the treatment and DKAFO's would be in your system?

Thanks for the information.

and (3-17-99)

> 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.