Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 Oh I so know what you mean about the ballet!!! Becky took a class during the summer and is going to start again next week in a ballet/tap class!!! I asked Dr. Ponseti about ballet specifically to make sure that was ok for her feet, and he said that it is a very good thing for her. It is just amazing to me to think her feet were so twisted and crooked, but now she is up on her toes and trying to dance and Becky 2 1/2 bilateral clubfoot > > > > 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. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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