Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Welcome Drew, , and Little Ava, Just wanted to welcome you to the board. We are Pam, Ralph, and our youngest, 18 month old Raphael. He is our 5th child and the only one of our brood born with bilateral clubfeet. We live on Long Island, an hour out of NYC. We found out about 's condition in a sonogram when I was 6 months pregnant. A month later, through a local news broadcast, we found out about the French Physiotherapy method at ish Rite in Dallas and trained to do that therapy with our son. (We only found out this spring about the Ponseti method and about doctors in our area using it this spring. Had we known about it sooner, we would have seriously considered it.) When was born, in our area, nothing but the traditional casting and surgery was available. We found an orthropedist on the Island who was willing to give the French Physiotherapy method a try. Between the orthropedist, the ish Rite method, the splints and later AFO's, and a wonderful pediatric chiropractor who oversaw our program and helped us with other therapeutic techniques, progressed beautifully. Unfortunately, we could not see it all the way without any surgery. had a heel-cord tenonomy (which was according to our doctor, actually less involved that the one used in the Ponseti method, although the explanation as to why it is escapes me) and a soft tissue release (for a misaligned bone - the doctor said it went far easier than anticipated) done on each foot on the same day your Ava was born. Dr. Gail Chorney of NYU Hospital for Joint Diseases is 's doctor now and is simply the best. The compassion of the doctors and staff there is only outweighed by their skill. (We came to Dr. Chorney after firing 's former orthropedist for lost x- rays, bumped appointments repeatedly and showed other signs of carelessness with his case.) NYUHJD just started doing the Ponseti and French Physiotherapy methods early this spring and does all of the traditional surgical techniques as well. is recooperating beautifully and was back to normal by dinnertime the same day and was crawling, standing, and climbing, casts and all by the middle of the next day, all with his doctor's blessings. He will be in casts for 6 weeks, then braces. We plan to add physical therapy to the routine as well. The doctors tell us that the therapy was the difference between the need for only one surgery and possibly several, so we know that it was worth all the hard work. We have been assured by Dr. Chorney that will need no further surgery, unless he ever relapses during a growth spurt, so our newest challenge is to help to make sure that a relapse never occurs. Wish you all the best with your beautiful little girl. Dealing with the treatment of clubfeet is a challenge, but nothing you guys can't handle. You have found a great place here for information and compassionate support. Let us know if we can be of any help. We'll be keeping you in our prayers... Blessings, Pam, Ralph, Raphael, and the crew > Hello All, > > First off, we would like to introduce ourselves. My name is Drew > Graham, and my wife and I live in Seattle, Washington. On > Wednesday June 21st at 17:57 we deliverd our first child - Ava Mae > Graham. As you can imagine, the anticipation of bringing our first > child into this world has been the most exciting time of our 30 year > life. > > Shortly after delivery we determined that both of Ava's feet > were " not right " - we quickly forgot about her condition and enjoyed > the wonderful first day of being a family. The next morning I > immediately began researching her condition. Prior to our > pediatrician examining her, my wife and I had determined that she > had all signs of bilateral clubfeet. Luckily the childbirth center > that we delivered in had a nice medical library with an internet > connection. The essence of my research concluded that there are > three primary paths of treatment: Casting followed by Tarsal Release > Surgery, The Ponseti Method, and Physiotherapy . > > As you can imagine the decision on which path to take is still not > clear. > > At this point, and I have read everything possible > (including hundreds of posts from this message board) regarding the > three aforementioned paths > > We have sent Dr. Ponseti an email message asking him to contact us on > Monday. We currently have a appointment on Thursday with Dr. > Mosca who is the Chief of Pediatric Orthopaedics at University of > Washington and Director of the Department of Orthopaedics at > Children's hospital in Seattle. > > We found an update from Lori on the SFO meeting - evidently you sold > a Ponseti book to Dr. Kit Song who works under Dr. Mosca at > UW. We are curious if there are any people from the Seattle area who > have had their children treated by Dr. Song or Dr. Mosca. > > At this point, we have decided that - at any cost - we will find the > best treatment available for our beautiful daughter. This may mean > flying to Iowa City (Ponseti), Pleasonton (Colburn), Pocatello > (Mickelson), or New Westminister(Pirani). > > Can anyone comment on Dr. Mickelson in Idaho or Dr. Pirani in BC. ? <- > --These two are the closest to Seattle from the information we have. > > Any input is much appreciated ! > > Thanks, > > Drew, , and Ava Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Drew, & Ava, Welcome to you all! Congratulations on Ava's birth. I'm and my son Jakob was born 2/9/98 with bilateral clubfeet. We did not know before Jakob was born that he would have clubfeet, so it was quite a shock. You can read more detail of Jakob's story at http://clubfoot.homestead.com Since we live in Iowa City, IA, and went to one of Dr. Ponseti's local colleagues (Dr. Weinstein), I can't tell you anything about Drs. Colburn, Mickleson, or Pirani. I'm sure they are all wonderful though. Rest assured that no matter which path you choose to follow (Ponseti Method, Physiotherapy, or Surgery), you will have done everything right for Ava. Drew & Graham wrote: > Hello All, > > First off, we would like to introduce ourselves. My name is Drew > Graham, and my wife and I live in Seattle, Washington. On > Wednesday June 21st at 17:57 we deliverd our first child - Ava Mae > Graham. As you can imagine, the anticipation of bringing our first > child into this world has been the most exciting time of our 30 year > life. > > Shortly after delivery we determined that both of Ava's feet > were " not right " - we quickly forgot about her condition and enjoyed > the wonderful first day of being a family. The next morning I > immediately began researching her condition. Prior to our > pediatrician examining her, my wife and I had determined that she > had all signs of bilateral clubfeet. Luckily the childbirth center > that we delivered in had a nice medical library with an internet > connection. The essence of my research concluded that there are > three primary paths of treatment: Casting followed by Tarsal Release > Surgery, The Ponseti Method, and Physiotherapy . > > As you can imagine the decision on which path to take is still not > clear. > > At this point, and I have read everything possible > (including hundreds of posts from this message board) regarding the > three aforementioned paths > > We have sent Dr. Ponseti an email message asking him to contact us on > Monday. We currently have a appointment on Thursday with Dr. > Mosca who is the Chief of Pediatric Orthopaedics at University of > Washington and Director of the Department of Orthopaedics at > Children's hospital in Seattle. > > We found an update from Lori on the SFO meeting - evidently you sold > a Ponseti book to Dr. Kit Song who works under Dr. Mosca at > UW. We are curious if there are any people from the Seattle area who > have had their children treated by Dr. Song or Dr. Mosca. > > At this point, we have decided that - at any cost - we will find the > best treatment available for our beautiful daughter. This may mean > flying to Iowa City (Ponseti), Pleasonton (Colburn), Pocatello > (Mickelson), or New Westminister(Pirani). > > Can anyone comment on Dr. Mickelson in Idaho or Dr. Pirani in BC. ? <- > > --These two are the closest to Seattle from the information we have. > > Any input is much appreciated ! > > Thanks, > > Drew, , and Ava > > > > > > ----------------------------------------------------------------------- > > ----------------------------------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Welcome, Drew, , and Ava!!! My name is Joy, and my husband Neil and I are from WIsconsin. My daughter Rose was born January 30, 1999. When she was born, I noticed her left foot was twisted. We were assured by the on-call ortho that it was very fixable. he casted Rose for 2.5 months, and we were referred to a pediatric orthopedic doctor who told us she would need surgery at 7 months. Well, 3 weeks before her surgery was to occur, I took Rose to Dr. Ponseti in Iowa City. With his first manipulation and casting, we saw significant results! She received her tenotomy, another cast, and then she was wearing the brace. Rose started walking at 13 months, and we have been extremely thankful and grateful that God sent us to Dr. Ponseti through this wonderful network of people and information. Best wishes to you and your family as you begin Ava's treatment. It is wonderful that you are weighing all your options and doing such a thorough job. I can't be of any help regarding the Dr.s you mentioned except that I have heard good things about them. Best wishes in your decision. Joy http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Drew, and Ava Welcome to our group. It appears that you have already done a lot of research and we all hope that we can try to provide you with information that will be of help to you in deciding what you want to do. We have great confidence that Dr. Ponseti with get back in touch with you soon and be able to answer your questions. He also is really the best one to ask regarding the doctors you have asked about as he has worked recently with all of them. I also am aware that Dr. Ponseti has great respect for Dr. Vince Mosca and Dr. Lynn Stahli in Seattle and has hoped that they would pick up his method, although I don't think that they are using it yet. It is possible that since the POSNA convention in Vancouver, B.C. the beginning of May that they may be a bit more interested in it which may explain why Dr. Kit Song was trying to get a copy of Dr. Ponseti's book from Lori in San Francisco the end of May. Concerning the doctors you have asked about, there are 2-3 of the parents here on this site who have Dr. Colburn as their doctor but so far no one who has Dr. Pirani or Dr. Michelson as their doctor. Also, Becky's original doctor in Boise, Idaho recently switched over to the Ponseti method as well. I have met Dr. Colburn twice while in San Francisco for clubfoot clinics when Dr. Ponseti was there. He has treated clubfoot for over 16 years in the traditional methods until switching over to the Ponseti method last November. I have also talked to Dr. Pirani by phone and e-mail and he has now been using the Ponseti method for about 2-3 years. The fact that New Westminster (Vancouver, BC) is only about 150 miles from Seattle may make traveling there a bit easier depending on what you want to do. I had posted a message here about a recent conversation with Dr. Pirani at /message/nosurgery4clubfoot/1759? & start=708 You may also choose to go to Iowa but traveling there and back is not very easy. Many of us in the western US went to Iowa before the doctors here on the west coast were available. One thing that can help in looking for messages here at the e-groups site is to use the search function in the upper right hand part of the message board and then put in the subject you want to search for. It will return all messages that had that word in them. You could enter Dr. Pirani, Dr. Colburn etc. and then see those who have discussed something to do with them. In the meantime, there is a lot of information available at Dr. Ponseti's web site as well as in the links and files sections of this egroups site. Also please ask any questions that you may have and our best wishes for whatever you decide to do. , Allyson and (3-17-99) http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Egbert.html > Hello All, > > First off, we would like to introduce ourselves. My name is Drew > Graham, and my wife and I live in Seattle, Washington. On > Wednesday June 21st at 17:57 we deliverd our first child - Ava Mae > Graham. As you can imagine, the anticipation of bringing our first > child into this world has been the most exciting time of our 30 year > life. > > Shortly after delivery we determined that both of Ava's feet > were " not right " - we quickly forgot about her condition and enjoyed > the wonderful first day of being a family. The next morning I > immediately began researching her condition. Prior to our > pediatrician examining her, my wife and I had determined that she > had all signs of bilateral clubfeet. Luckily the childbirth center > that we delivered in had a nice medical library with an internet > connection. The essence of my research concluded that there are > three primary paths of treatment: Casting followed by Tarsal Release > Surgery, The Ponseti Method, and Physiotherapy . > > As you can imagine the decision on which path to take is still not > clear. > > At this point, and I have read everything possible > (including hundreds of posts from this message board) regarding the > three aforementioned paths > > We have sent Dr. Ponseti an email message asking him to contact us on > Monday. We currently have a appointment on Thursday with Dr. > Mosca who is the Chief of Pediatric Orthopaedics at University of > Washington and Director of the Department of Orthopaedics at > Children's hospital in Seattle. > > We found an update from Lori on the SFO meeting - evidently you sold > a Ponseti book to Dr. Kit Song who works under Dr. Mosca at > UW. We are curious if there are any people from the Seattle area who > have had their children treated by Dr. Song or Dr. Mosca. > > At this point, we have decided that - at any cost - we will find the > best treatment available for our beautiful daughter. This may mean > flying to Iowa City (Ponseti), Pleasonton (Colburn), Pocatello > (Mickelson), or New Westminister(Pirani). > > Can anyone comment on Dr. Mickelson in Idaho or Dr. Pirani in BC. ? <- > --These two are the closest to Seattle from the information we have. > > Any input is much appreciated ! > > Thanks, > > Drew, , and Ava Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2000 Report Share Posted June 26, 2000 Drew, , and Ava, Congratulations on the birth of your daughter and welcome to this list. You have certainly come to the right place for advice and encouragement! We are Kim and and our 4th () was born 9/30/99 with bilateral clubfeet. Our local ortho gave us stretching exercises to do, but we weren't getting anywhere, so we headed to the Shriner's hospital when was 3 months old. Their plan was casting for 2-3 months and surgery when C was 9 months old. We discovered Dr. Ponseti's method online and found this list, and through a series of miracles ended up in Iowa City when was 4 months old. After 3 sets of casts and a tenotomy, 's feet looked awesome! He's wearing braces now at night and naptimes. We just took him for a follow-up with a local pediatric ortho and he said that you could never tell that had been born with clubfeet! We will keep you and your precious baby in our prayers. In Him, Kim, wife to mother to Kaelyn, Chandler, Corey, and http://albums.photopoint.com/j/AlbumIndex?u=254581 & a=1892774 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2000 Report Share Posted June 26, 2000 Welcome! Glad you guys had access to all the information you did while still in the hospital! Our son, Caleb, was born 2/2/2000 with right clubfoot. We didn't know until he was born, either. Caleb is using the French physiotherapy method and is doing remarkably well. He is now 100% corrected without any type of invasive procedure whatsover. He started treatment when he was 6 days old. We still go to PT for now, but probably won't much longer. He's now wearing the Denis Browne splint at night and during naps and doesn't mind it all. You can see pictures of his feet and read a little about his treatment on his web page (below). We wish you guys all the best! Congratulations on your precious little girl! God Bless! , Traci, and Caleb http://sites.netscape.net/jmerkelfamily/clubfoot Drew & Graham wrote: > Hello All, > > First off, we would like to introduce ourselves. My name is Drew > Graham, and my wife and I live in Seattle, Washington. On > Wednesday June 21st at 17:57 we deliverd our first child - Ava Mae > Graham. As you can imagine, the anticipation of bringing our first > child into this world has been the most exciting time of our 30 year > life. > > Shortly after delivery we determined that both of Ava's feet > were " not right " - we quickly forgot about her condition and enjoyed > the wonderful first day of being a family. The next morning I > immediately began researching her condition. Prior to our > pediatrician examining her, my wife and I had determined that she > had all signs of bilateral clubfeet. Luckily the childbirth center > that we delivered in had a nice medical library with an internet > connection. The essence of my research concluded that there are > three primary paths of treatment: Casting followed by Tarsal Release > Surgery, The Ponseti Method, and Physiotherapy . > > As you can imagine the decision on which path to take is still not > clear. > > At this point, and I have read everything possible > (including hundreds of posts from this message board) regarding the > three aforementioned paths > > We have sent Dr. Ponseti an email message asking him to contact us on > Monday. We currently have a appointment on Thursday with Dr. > Mosca who is the Chief of Pediatric Orthopaedics at University of > Washington and Director of the Department of Orthopaedics at > Children's hospital in Seattle. > > We found an update from Lori on the SFO meeting - evidently you sold > a Ponseti book to Dr. Kit Song who works under Dr. Mosca at > UW. We are curious if there are any people from the Seattle area who > have had their children treated by Dr. Song or Dr. Mosca. > > At this point, we have decided that - at any cost - we will find the > best treatment available for our beautiful daughter. This may mean > flying to Iowa City (Ponseti), Pleasonton (Colburn), Pocatello > (Mickelson), or New Westminister(Pirani). > > Can anyone comment on Dr. Mickelson in Idaho or Dr. Pirani in BC. ? <- > --These two are the closest to Seattle from the information we have. > > Any input is much appreciated ! > > Thanks, > > Drew, , and Ava > > ------------------------------------------------------------------------ > Get Your FREE Online Credit Report! > http://click./1/5783/4/_/675489/_/961966747/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2000 Report Share Posted June 28, 2000 Hello and Welcome LOVE the name you chose for your daughter! My name is Lori (I sold Kit Song that book you mentioned). My daughter is Annika, born 3/30/99 with bilateral clubfoot. Treated for 5 weeks with non-Ponseti method. Then received 5 Ponseti(by Dr. Ponseti) casts and heel cord tenontimies on each foot. The link to her photos is after my signature. I can't be of much help other than to tell you what Kit Song told me at the Symposium and to say that I have spoken to Dr. Pirani on the telephone about the Uganda Clubfoot project. I also have met Dr. Colburn as he practices about 1/2 hour from me. If you would like to discuss this more, please give me a call at . At this time, it would be easier for me to speak to you via telephone than to type out everything. If you would like me to call you, just email me at gillam@... and give me your number. I'd be happy to call you. From: Lori Stime Research Associate in: Child Development and Human Relations Annika's Clubfeet Photos http://albums.photopoint.com/j/AlbumIndex?u=76323 & a=601182 > Ava Mae Graham > > > Hello All, > > First off, we would like to introduce ourselves. My name is Drew > Graham, and my wife and I live in Seattle, Washington. On > Wednesday June 21st at 17:57 we deliverd our first child - Ava Mae > Graham. As you can imagine, the anticipation of bringing our first > child into this world has been the most exciting time of our 30 year > life. > > Shortly after delivery we determined that both of Ava's feet > were " not right " - we quickly forgot about her condition and enjoyed > the wonderful first day of being a family. The next morning I > immediately began researching her condition. Prior to our > pediatrician examining her, my wife and I had determined that she > had all signs of bilateral clubfeet. Luckily the childbirth center > that we delivered in had a nice medical library with an internet > connection. The essence of my research concluded that there are > three primary paths of treatment: Casting followed by Tarsal Release > Surgery, The Ponseti Method, and Physiotherapy . > > As you can imagine the decision on which path to take is still not > clear. > > At this point, and I have read everything possible > (including hundreds of posts from this message board) regarding the > three aforementioned paths > > We have sent Dr. Ponseti an email message asking him to contact us on > Monday. We currently have a appointment on Thursday with Dr. > Mosca who is the Chief of Pediatric Orthopaedics at University of > Washington and Director of the Department of Orthopaedics at > Children's hospital in Seattle. > > We found an update from Lori on the SFO meeting - evidently you sold > a Ponseti book to Dr. Kit Song who works under Dr. Mosca at > UW. We are curious if there are any people from the Seattle area who > have had their children treated by Dr. Song or Dr. Mosca. > > At this point, we have decided that - at any cost - we will find the > best treatment available for our beautiful daughter. This may mean > flying to Iowa City (Ponseti), Pleasonton (Colburn), Pocatello > (Mickelson), or New Westminister(Pirani). > > Can anyone comment on Dr. Mickelson in Idaho or Dr. Pirani in BC. ? <- > --These two are the closest to Seattle from the information we have. > > Any input is much appreciated ! > > Thanks, > > Drew, , and Ava > > > > > > > ------------------------------------------------------------------------ > Get Your FREE Online Credit Report! > http://click./1/5783/4/_/675489/_/961966747/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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