Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Welcome to the group and three cheers for getting a 2nd opinion! Keep us informed! s. ~~~~ New Member ~~~~ Hi: I am Kim , mom to Madilyne (although I call her Maddie). I have been on the other clubfoot Yahoo group and a couple of members suggested that I join this group also. SO, here I am! Let me tell you a little about by daughter. Maddie will be 3 months old tomorrow :) She is such a sweet baby!!! She was born with bi-lateral club feet. We found out that she had club feet when I was about 18 weeks pregnant, so I was able to do some reasearch on the Internet. Admist all of the strange things that you tend to find on the Internet, I did learn that casting was the best form of treatment. WHAT I DID NOT LEARN WAS THAT NOT ALL " CASTING METHODS " ARE THE SAME. Just because a doctor casts, does not mean they follow the Ponstei method. This is something that I have learned only over the past few weeks. Maddie was casted at 1 week old, not with plaster casts, but with the peel away, fiberglass casts. She has done really well! She had a tenotomy, and then re-casted (only two weeks...). Again, I still did not know any better (yet...). On Labor day weekend, I removed her casts and we started with shoes and DDB (70 degrees). This is when it all went down hill. My poor baby cried, well screamed, all afternoon and into the night. I had to take the shoes off! I did not know what else to to. We went back and got her shoes re-sized (we had 0000 N and needed one 0000 M and one 000 M). She kept them on through the night, although she did not sleep, cried most of the night. The next day, I took them off to give her a bath. When I tried to put the shoes and bar back on her she SCREAMED... to the point that she was choking herself. I too was balling, and again, refused to put the shoes back on immediately. I could not bear to hear her cry like that any more. I have been seeing a very good Ped Orthopedist. He is the Chief of the Department at 's Hopkins. But, based on what I have learned through e-mail conversations with the other " clubfoot " board, Dr. Herzenberg and even Dr. Ponseti, it sounds like her feet are not fully corrected to 70 degrees and this is why to shoes and bar actually hurt her so much. As not to loose any correction that she already has, we have the shoes set at a 50 degree external rotation. She is doing just fine with the shoes now. Pre-shoe, she was sleeping 7-8 hours, now about 5-6. We are going to see Dr. Herzenberg tomorrow for a consultation. Dr. Ponseti also offered to she Maddie and recommeded other shoes. Dr. Herzenberg wants to check the correction of her feet and then maybe look into the shoes. I have learned SO much from these boards. I only wish that I would have found this information and support earlier! I will let you know how tomorrow goes..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Hi: I am Kim , mom to Madilyne (although I call her Maddie). I have been on the other clubfoot Yahoo group and a couple of members suggested that I join this group also. SO, here I am! Let me tell you a little about by daughter. Maddie will be 3 months old tomorrow :) She is such a sweet baby!!! She was born with bi-lateral club feet. We found out that she had club feet when I was about 18 weeks pregnant, so I was able to do some reasearch on the Internet. Admist all of the strange things that you tend to find on the Internet, I did learn that casting was the best form of treatment. WHAT I DID NOT LEARN WAS THAT NOT ALL " CASTING METHODS " ARE THE SAME. Just because a doctor casts, does not mean they follow the Ponstei method. This is something that I have learned only over the past few weeks. Maddie was casted at 1 week old, not with plaster casts, but with the peel away, fiberglass casts. She has done really well! She had a tenotomy, and then re-casted (only two weeks...). Again, I still did not know any better (yet...). On Labor day weekend, I removed her casts and we started with shoes and DDB (70 degrees). This is when it all went down hill. My poor baby cried, well screamed, all afternoon and into the night. I had to take the shoes off! I did not know what else to to. We went back and got her shoes re-sized (we had 0000 N and needed one 0000 M and one 000 M). She kept them on through the night, although she did not sleep, cried most of the night. The next day, I took them off to give her a bath. When I tried to put the shoes and bar back on her she SCREAMED... to the point that she was choking herself. I too was balling, and again, refused to put the shoes back on immediately. I could not bear to hear her cry like that any more. I have been seeing a very good Ped Orthopedist. He is the Chief of the Department at 's Hopkins. But, based on what I have learned through e-mail conversations with the other " clubfoot " board, Dr. Herzenberg and even Dr. Ponseti, it sounds like her feet are not fully corrected to 70 degrees and this is why to shoes and bar actually hurt her so much. As not to loose any correction that she already has, we have the shoes set at a 50 degree external rotation. She is doing just fine with the shoes now. Pre-shoe, she was sleeping 7-8 hours, now about 5-6. We are going to see Dr. Herzenberg tomorrow for a consultation. Dr. Ponseti also offered to she Maddie and recommeded other shoes. Dr. Herzenberg wants to check the correction of her feet and then maybe look into the shoes. I have learned SO much from these boards. I only wish that I would have found this information and support earlier! I will let you know how tomorrow goes..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Kim and Maddie, First of all, welcome to the group! We're an active, lively and compassionate group. I'm glad you decided to join. My husband and I were just the other day talking about how slowly it dawned on us that all casting techniques are not as effective. When Jonah was born and we started to research clubfoot, Dr Ponseti's site was one of the first we came across. We were so relieved by his words, by reading that very few children need surgery, that it was really pretty simple to correct and that he had been getting such tremendous results for so long. It was really only after 3 months of traumatic and expensive treatment with a local orthopedic surgeon that we started to wonder what was up and looked into it alot more closely. Needless to say, we quickly found a doctor how had been trained by Dr Ponseti and who is committed to following the method. A doctor who is 300 miles away from where we live, but who's counting? In any case, you will not regret getting a second opinion from Dr Herzenberg. Apart from Dr Ponseti and his colleagues, he has been practicing this method the longest and has wonderful results. Please let us know how it goes. We wish you continued success! Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, corrected bilateral clubfoot, FAB 14/7) kimw989 wrote: Hi: I am Kim , mom to Madilyne (although I call her Maddie). I have been on the other clubfoot Yahoo group and a couple of members suggested that I join this group also. SO, here I am! Let me tell you a little about by daughter. Maddie will be 3 months old tomorrow :) She is such a sweet baby!!! She was born with bi-lateral club feet. We found out that she had club feet when I was about 18 weeks pregnant, so I was able to do some reasearch on the Internet. Admist all of the strange things that you tend to find on the Internet, I did learn that casting was the best form of treatment. WHAT I DID NOT LEARN WAS THAT NOT ALL " CASTING METHODS " ARE THE SAME. Just because a doctor casts, does not mean they follow the Ponstei method. This is something that I have learned only over the past few weeks. Maddie was casted at 1 week old, not with plaster casts, but with the peel away, fiberglass casts. She has done really well! She had a tenotomy, and then re-casted (only two weeks...). Again, I still did not know any better (yet...). On Labor day weekend, I removed her casts and we started with shoes and DDB (70 degrees). This is when it all went down hill. My poor baby cried, well screamed, all afternoon and into the night. I had to take the shoes off! I did not know what else to to. We went back and got her shoes re-sized (we had 0000 N and needed one 0000 M and one 000 M). She kept them on through the night, although she did not sleep, cried most of the night. The next day, I took them off to give her a bath. When I tried to put the shoes and bar back on her she SCREAMED... to the point that she was choking herself. I too was balling, and again, refused to put the shoes back on immediately. I could not bear to hear her cry like that any more. I have been seeing a very good Ped Orthopedist. He is the Chief of the Department at 's Hopkins. But, based on what I have learned through e-mail conversations with the other " clubfoot " board, Dr. Herzenberg and even Dr. Ponseti, it sounds like her feet are not fully corrected to 70 degrees and this is why to shoes and bar actually hurt her so much. As not to loose any correction that she already has, we have the shoes set at a 50 degree external rotation. She is doing just fine with the shoes now. Pre-shoe, she was sleeping 7-8 hours, now about 5-6. We are going to see Dr. Herzenberg tomorrow for a consultation. Dr. Ponseti also offered to she Maddie and recommeded other shoes. Dr. Herzenberg wants to check the correction of her feet and then maybe look into the shoes. I have learned SO much from these boards. I only wish that I would have found this information and support earlier! I will let you know how tomorrow goes..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Good luck tomorrow and good for you for doing some research!! I am sure some of doctor Herzenberg's patients parents will reply to your message and tell you how good he is. Have heard nothing but great things about him on this board, so you are now in good hands. Let us know what he says. We are really happy that you and your little Maddie (cute name btw) are on the right track!!! & Grace 14 mo's right unilateral cf FAB 12-14 hrs > Hi: > > I am Kim , mom to Madilyne (although I call her Maddie). I > have been on the other clubfoot Yahoo group and a couple of members > suggested that I join this group also. SO, here I am! > > Let me tell you a little about by daughter. Maddie will be 3 months > old tomorrow :) She is such a sweet baby!!! She was born with > bi-lateral club feet. We found out that she had club feet when I was > about 18 weeks pregnant, so I was able to do some reasearch on the > Internet. Admist all of the strange things that you tend to find on > the Internet, I did learn that casting was the best form of > treatment. WHAT I DID NOT LEARN WAS THAT NOT ALL " CASTING METHODS " > ARE THE SAME. Just because a doctor casts, does not mean they follow > the Ponstei method. This is something that I have learned only over > the past few weeks. > > Maddie was casted at 1 week old, not with plaster casts, but with the > peel away, fiberglass casts. She has done really well! She had a > tenotomy, and then re-casted (only two weeks...). Again, I still did > not know any better (yet...). On Labor day weekend, I removed her > casts and we started with shoes and DDB (70 degrees). This is when > it all went down hill. My poor baby cried, well screamed, all > afternoon and into the night. I had to take the shoes off! I did > not know what else to to. We went back and got her shoes re-sized > (we had 0000 N and needed one 0000 M and one 000 M). She kept them > on through the night, although she did not sleep, cried most of the > night. The next day, I took them off to give her a bath. When I > tried to put the shoes and bar back on her she SCREAMED... to the > point that she was choking herself. I too was balling, and again, > refused to put the shoes back on immediately. I could not bear to > hear her cry like that any more. > > I have been seeing a very good Ped Orthopedist. He is the Chief of > the Department at 's Hopkins. But, based on what I have learned > through e-mail conversations with the other " clubfoot " board, Dr. > Herzenberg and even Dr. Ponseti, it sounds like her feet are not > fully corrected to 70 degrees and this is why to shoes and bar > actually hurt her so much. As not to loose any correction that she > already has, we have the shoes set at a 50 degree external rotation. > She is doing just fine with the shoes now. Pre-shoe, she was > sleeping 7-8 hours, now about 5-6. > > We are going to see Dr. Herzenberg tomorrow for a consultation. Dr. > Ponseti also offered to she Maddie and recommeded other shoes. Dr. > Herzenberg wants to check the correction of her feet and then maybe > look into the shoes. > > I have learned SO much from these boards. I only wish that I would > have found this information and support earlier! I will let you know > how tomorrow goes..... Quote Link to comment Share on other sites More sharing options...
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