Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi Welcome to the group. I just wanted to verify to you through 1st hand experience that dupont in Wilmington, DE does not use the ponsieti mehtod no matter what they lead you to believe. They did lead me to believe it even when I questioned not only the doctors but even the residents listening in. I let my son have surgery there at 8 weeks old he was treated by Dr. " Jay " and the suregery his foot stiff. He even used short leg casts on him and always had us soak off casts the previous night which makes them loose the correction they just achieved. We now see Dr. Herzenberg at Sinai in Baltimore, MD and he is great. My son's story is at http://www.geocities.com/chele323232 Michele Collin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi Welcome to the group. I just wanted to verify to you through 1st hand experience that dupont in Wilmington, DE does not use the ponsieti mehtod no matter what they lead you to believe. They did lead me to believe it even when I questioned not only the doctors but even the residents listening in. I let my son have surgery there at 8 weeks old he was treated by Dr. " Jay " and the suregery his foot stiff. He even used short leg casts on him and always had us soak off casts the previous night which makes them loose the correction they just achieved. We now see Dr. Herzenberg at Sinai in Baltimore, MD and he is great. My son's story is at http://www.geocities.com/chele323232 Michele Collin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi Welcome to the group. I just wanted to verify to you through 1st hand experience that dupont in Wilmington, DE does not use the ponsieti mehtod no matter what they lead you to believe. They did lead me to believe it even when I questioned not only the doctors but even the residents listening in. I let my son have surgery there at 8 weeks old he was treated by Dr. " Jay " and the suregery his foot stiff. He even used short leg casts on him and always had us soak off casts the previous night which makes them loose the correction they just achieved. We now see Dr. Herzenberg at Sinai in Baltimore, MD and he is great. My son's story is at http://www.geocities.com/chele323232 Michele Collin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 That's a great point Kori, the number for doctor Herzenberg's secretary Shelia is maybe you should call her rather then the appoinment desk. Good Luck!!!! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 That's a great point Kori, the number for doctor Herzenberg's secretary Shelia is maybe you should call her rather then the appoinment desk. Good Luck!!!! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 That's a great point Kori, the number for doctor Herzenberg's secretary Shelia is maybe you should call her rather then the appoinment desk. Good Luck!!!! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi KK, Okay so you need to call Dr Herzenberg's secretary, Sheila, IMMEDIATELY at or email Dr. H directly at JHERZENBERG@... and tell your story. Include pictures if you can. He will likely get you in for an appointment MUCH sooner than November. I emailed him about on July 7th and we had an appt the morning of July 9th! If Ava's (BTW , I LOVE that name!!) feet are not fully corrected, then the DBB is not going to make them any better. I have been very pleased with 's care under Dr. H. We switched to him at 10 months old! He and the staff at the Rubin Institute have been wonderful with !! Good luck! Marilouise 9/9/03, LCF, 3 week cast after 2nd tenotomy (12 days left) Owen and 3/20/99 > Hi, > My name is KK. My husband and I have 2 girls. Livi 19mnths and Ava > 3mnths. Ava was born w/bilat CF. I cried when we found out through > US. They looked for it due to me having CF also. I was treated > surgically. Yes, some thirty years ago. I can't tell you how much I > cried thinking about how much she would miss out on her normal > childhood activities. My husband not to familiar with CF. We looked > it up on the internet. After reading up on CF we decided to do the > ponseti method. We interviewed several physicians before birth and > decieded on dupont in DE. I did have several doubts about the course > of treatment at dupont. After reading about ponseti's method and > seeing them treat her I was doubting whether or not they were truly > implementing this method on her. After her second casting her R foot > so dramaticly wrenched, it seems as though it is now stunted. Very > small and wide compared to her L. I read a rant from in > your archieve and definitly decided to seek a 2nd opinion. We are > from PA. and I have been hearing alot about Dr. H. First avail appt. > is in NOV. They will contact me if there is a cancelation. Let's > hope!! Could you guys give me feedback about him, those of you who > do see him? I know some of you see Dr. Ponseti himself, how long > does it take to get there, by car that is if you drive out there. I > was thinking about emailing him a summary of pics and progress to get > his opinion. Ava is now in a DBB, 1 week now. I myself can't put the > shoes on right but my husband gets it everytime. She is in them 23/7. > I can already see the R foot moderately relapsing?? I could go on > but as I said I just wanted to introduce myself and Ava to your group > and thank you for being here and listening to me. I hope to hear > from you. Also can you tell me what the FAB is? Sorry to sound dump > but I'm guessing it's a type of brace???? > > KK > Ava 5/27/04 BCF/DBB-1wk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi KK, Okay so you need to call Dr Herzenberg's secretary, Sheila, IMMEDIATELY at or email Dr. H directly at JHERZENBERG@... and tell your story. Include pictures if you can. He will likely get you in for an appointment MUCH sooner than November. I emailed him about on July 7th and we had an appt the morning of July 9th! If Ava's (BTW , I LOVE that name!!) feet are not fully corrected, then the DBB is not going to make them any better. I have been very pleased with 's care under Dr. H. We switched to him at 10 months old! He and the staff at the Rubin Institute have been wonderful with !! Good luck! Marilouise 9/9/03, LCF, 3 week cast after 2nd tenotomy (12 days left) Owen and 3/20/99 > Hi, > My name is KK. My husband and I have 2 girls. Livi 19mnths and Ava > 3mnths. Ava was born w/bilat CF. I cried when we found out through > US. They looked for it due to me having CF also. I was treated > surgically. Yes, some thirty years ago. I can't tell you how much I > cried thinking about how much she would miss out on her normal > childhood activities. My husband not to familiar with CF. We looked > it up on the internet. After reading up on CF we decided to do the > ponseti method. We interviewed several physicians before birth and > decieded on dupont in DE. I did have several doubts about the course > of treatment at dupont. After reading about ponseti's method and > seeing them treat her I was doubting whether or not they were truly > implementing this method on her. After her second casting her R foot > so dramaticly wrenched, it seems as though it is now stunted. Very > small and wide compared to her L. I read a rant from in > your archieve and definitly decided to seek a 2nd opinion. We are > from PA. and I have been hearing alot about Dr. H. First avail appt. > is in NOV. They will contact me if there is a cancelation. Let's > hope!! Could you guys give me feedback about him, those of you who > do see him? I know some of you see Dr. Ponseti himself, how long > does it take to get there, by car that is if you drive out there. I > was thinking about emailing him a summary of pics and progress to get > his opinion. Ava is now in a DBB, 1 week now. I myself can't put the > shoes on right but my husband gets it everytime. She is in them 23/7. > I can already see the R foot moderately relapsing?? I could go on > but as I said I just wanted to introduce myself and Ava to your group > and thank you for being here and listening to me. I hope to hear > from you. Also can you tell me what the FAB is? Sorry to sound dump > but I'm guessing it's a type of brace???? > > KK > Ava 5/27/04 BCF/DBB-1wk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 FAB stands for foot abduction brace. It is a term used for whatever kind of brace your baby is using. brace, Denis Brown bar, Markell are all classified as a FAB. I started with a doctor who also claimed to be doing the Ponseti method. He wasn't. We live 6 hours from Dr Ponseti so after e- mailing him pictures, he requested that we come down to see him because dd has atypical clubfeet. I would recommend e-mailing pictures and getting his opinion. He likes weight bearing pictures and pictures of the bottom of the feet and heals. It can't hurt. You could check Map quest or another mapping site to get the length of time it would take you to drive to see Dr Ponsiti. Also Angel flights and the Mc house are available to help with $ for a trip to Iowa City. Also if you want more feed back you could join the CFPics picture group and send some pictures out to us. HTH. Tori 1/30/04 bilateral atypical cf brace 18 hrs a day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 FAB stands for foot abduction brace. It is a term used for whatever kind of brace your baby is using. brace, Denis Brown bar, Markell are all classified as a FAB. I started with a doctor who also claimed to be doing the Ponseti method. He wasn't. We live 6 hours from Dr Ponseti so after e- mailing him pictures, he requested that we come down to see him because dd has atypical clubfeet. I would recommend e-mailing pictures and getting his opinion. He likes weight bearing pictures and pictures of the bottom of the feet and heals. It can't hurt. You could check Map quest or another mapping site to get the length of time it would take you to drive to see Dr Ponsiti. Also Angel flights and the Mc house are available to help with $ for a trip to Iowa City. Also if you want more feed back you could join the CFPics picture group and send some pictures out to us. HTH. Tori 1/30/04 bilateral atypical cf brace 18 hrs a day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi KK, Absolutely, as the others have said.. call his secretary directly! I am positive they will get you in sooner. Appointment desks are at a distance from the doctors and are notorious for not understanding the immediacy of the need for clubfoot care. Most of the time doctors doing the method will get you in within a few days. Dr. Herzenberg is great.. very skilled, highly regarded and one of the authorities on the method. Here is a page on his site showing pics of a coulple of babies about the age of your daughter, who switched to him after previously unsucessful treatment.. you can see the great results: http://www.lifebridgehealth.org/sinaibody.cfm?id=1530 Please let us know when you talk to his secretary. Keep us updated! and Claire > > Hi, > > My name is KK. My husband and I have 2 girls. Livi 19mnths and Ava > > 3mnths. Ava was born w/bilat CF. I cried when we found out > through > > US. They looked for it due to me having CF also. I was treated > > surgically. Yes, some thirty years ago. I can't tell you how > much I > > cried thinking about how much she would miss out on her normal > > childhood activities. My husband not to familiar with CF. We > looked > > it up on the internet. After reading up on CF we decided to do the > > ponseti method. We interviewed several physicians before birth > and > > decieded on dupont in DE. I did have several doubts about the > course > > of treatment at dupont. After reading about ponseti's method and > > seeing them treat her I was doubting whether or not they were > truly > > implementing this method on her. After her second casting her R > foot > > so dramaticly wrenched, it seems as though it is now stunted. Very > > small and wide compared to her L. I read a rant from in > > your archieve and definitly decided to seek a 2nd opinion. We are > > from PA. and I have been hearing alot about Dr. H. First avail > appt. > > is in NOV. They will contact me if there is a cancelation. Let's > > hope!! Could you guys give me feedback about him, those of you > who > > do see him? I know some of you see Dr. Ponseti himself, how long > > does it take to get there, by car that is if you drive out there. > I > > was thinking about emailing him a summary of pics and progress to > get > > his opinion. Ava is now in a DBB, 1 week now. I myself can't put > the > > shoes on right but my husband gets it everytime. She is in them > 23/7. > > I can already see the R foot moderately relapsing?? I could go on > > but as I said I just wanted to introduce myself and Ava to your > group > > and thank you for being here and listening to me. I hope to hear > > from you. Also can you tell me what the FAB is? Sorry to sound > dump > > but I'm guessing it's a type of brace???? > > > > KK > > Ava 5/27/04 BCF/DBB-1wk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi KK, Absolutely, as the others have said.. call his secretary directly! I am positive they will get you in sooner. Appointment desks are at a distance from the doctors and are notorious for not understanding the immediacy of the need for clubfoot care. Most of the time doctors doing the method will get you in within a few days. Dr. Herzenberg is great.. very skilled, highly regarded and one of the authorities on the method. Here is a page on his site showing pics of a coulple of babies about the age of your daughter, who switched to him after previously unsucessful treatment.. you can see the great results: http://www.lifebridgehealth.org/sinaibody.cfm?id=1530 Please let us know when you talk to his secretary. Keep us updated! and Claire > > Hi, > > My name is KK. My husband and I have 2 girls. Livi 19mnths and Ava > > 3mnths. Ava was born w/bilat CF. I cried when we found out > through > > US. They looked for it due to me having CF also. I was treated > > surgically. Yes, some thirty years ago. I can't tell you how > much I > > cried thinking about how much she would miss out on her normal > > childhood activities. My husband not to familiar with CF. We > looked > > it up on the internet. After reading up on CF we decided to do the > > ponseti method. We interviewed several physicians before birth > and > > decieded on dupont in DE. I did have several doubts about the > course > > of treatment at dupont. After reading about ponseti's method and > > seeing them treat her I was doubting whether or not they were > truly > > implementing this method on her. After her second casting her R > foot > > so dramaticly wrenched, it seems as though it is now stunted. Very > > small and wide compared to her L. I read a rant from in > > your archieve and definitly decided to seek a 2nd opinion. We are > > from PA. and I have been hearing alot about Dr. H. First avail > appt. > > is in NOV. They will contact me if there is a cancelation. Let's > > hope!! Could you guys give me feedback about him, those of you > who > > do see him? I know some of you see Dr. Ponseti himself, how long > > does it take to get there, by car that is if you drive out there. > I > > was thinking about emailing him a summary of pics and progress to > get > > his opinion. Ava is now in a DBB, 1 week now. I myself can't put > the > > shoes on right but my husband gets it everytime. She is in them > 23/7. > > I can already see the R foot moderately relapsing?? I could go on > > but as I said I just wanted to introduce myself and Ava to your > group > > and thank you for being here and listening to me. I hope to hear > > from you. Also can you tell me what the FAB is? Sorry to sound > dump > > but I'm guessing it's a type of brace???? > > > > KK > > Ava 5/27/04 BCF/DBB-1wk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 KK, Call Dr. Herzenberg or email him ASAP! I see that Marilouise gave you all of the contact info. I too was told back in July that I wasn't going to get an appt. until October. I was advised by this group to email Dr. H and he got back to me immediately about my son Christian. I then spoke to his secretary Sheila and she got us in quick. He is a terrific doctor. Mommy to 12/17/98 and Christian 1/30/04 _____ From: fabegirls Sent: Wednesday, September 01, 2004 9:58 AM To: nosurgery4clubfoot Subject: Introduce myself Hi, My name is KK. My husband and I have 2 girls. Livi 19mnths and Ava 3mnths. Ava was born w/bilat CF. I cried when we found out through US. They looked for it due to me having CF also. I was treated surgically. Yes, some thirty years ago. I can't tell you how much I cried thinking about how much she would miss out on her normal childhood activities. My husband not to familiar with CF. We looked it up on the internet. After reading up on CF we decided to do the ponseti method. We interviewed several physicians before birth and decieded on dupont in DE. I did have several doubts about the course of treatment at dupont. After reading about ponseti's method and seeing them treat her I was doubting whether or not they were truly implementing this method on her. After her second casting her R foot so dramaticly wrenched, it seems as though it is now stunted. Very small and wide compared to her L. I read a rant from in your archieve and definitly decided to seek a 2nd opinion. We are from PA. and I have been hearing alot about Dr. H. First avail appt. is in NOV. They will contact me if there is a cancelation. Let's hope!! Could you guys give me feedback about him, those of you who do see him? I know some of you see Dr. Ponseti himself, how long does it take to get there, by car that is if you drive out there. I was thinking about emailing him a summary of pics and progress to get his opinion. Ava is now in a DBB, 1 week now. I myself can't put the shoes on right but my husband gets it everytime. She is in them 23/7. I can already see the R foot moderately relapsing?? I could go on but as I said I just wanted to introduce myself and Ava to your group and thank you for being here and listening to me. I hope to hear from you. Also can you tell me what the FAB is? Sorry to sound dump but I'm guessing it's a type of brace???? KK Ava 5/27/04 BCF/DBB-1wk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 KK. I know several have given you info on Dr. Herzenberg, I am adding to the punch. We have been seeing him just a couple of weeks now and couldn't be happier. Definately call Sheila or email Dr. H himself. He will respond ASAP. I know for sure they will get you in before end of Sept. We started with another doc and weren't happy so we switched to Dr. H. It is about a 2 hour drive for us, which I know is less than some others. You can do it! I guarantee you will not be disappointed. I know there are several from this site who started at Dupont in DE and switched to DR. H. Good luck and keep us posted. Also, sometimes Joyce Roller will respond via email for Dr. Ponseti so keep a look out for her email as well. You could also call him directly. and 3/2/04 (2nd cast- 2nd go-around) > Hi, > My name is KK. My husband and I have 2 girls. Livi 19mnths and Ava > 3mnths. Ava was born w/bilat CF. I cried when we found out through > US. They looked for it due to me having CF also. I was treated > surgically. Yes, some thirty years ago. I can't tell you how much I > cried thinking about how much she would miss out on her normal > childhood activities. My husband not to familiar with CF. We looked > it up on the internet. After reading up on CF we decided to do the > ponseti method. We interviewed several physicians before birth and > decieded on dupont in DE. I did have several doubts about the course > of treatment at dupont. After reading about ponseti's method and > seeing them treat her I was doubting whether or not they were truly > implementing this method on her. After her second casting her R foot > so dramaticly wrenched, it seems as though it is now stunted. Very > small and wide compared to her L. I read a rant from in > your archieve and definitly decided to seek a 2nd opinion. We are > from PA. and I have been hearing alot about Dr. H. First avail appt. > is in NOV. They will contact me if there is a cancelation. Let's > hope!! Could you guys give me feedback about him, those of you who > do see him? I know some of you see Dr. Ponseti himself, how long > does it take to get there, by car that is if you drive out there. I > was thinking about emailing him a summary of pics and progress to get > his opinion. Ava is now in a DBB, 1 week now. I myself can't put the > shoes on right but my husband gets it everytime. She is in them 23/7. > I can already see the R foot moderately relapsing?? I could go on > but as I said I just wanted to introduce myself and Ava to your group > and thank you for being here and listening to me. I hope to hear > from you. Also can you tell me what the FAB is? Sorry to sound dump > but I'm guessing it's a type of brace???? > > KK > Ava 5/27/04 BCF/DBB-1wk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 KK. I know several have given you info on Dr. Herzenberg, I am adding to the punch. We have been seeing him just a couple of weeks now and couldn't be happier. Definately call Sheila or email Dr. H himself. He will respond ASAP. I know for sure they will get you in before end of Sept. We started with another doc and weren't happy so we switched to Dr. H. It is about a 2 hour drive for us, which I know is less than some others. You can do it! I guarantee you will not be disappointed. I know there are several from this site who started at Dupont in DE and switched to DR. H. Good luck and keep us posted. Also, sometimes Joyce Roller will respond via email for Dr. Ponseti so keep a look out for her email as well. You could also call him directly. and 3/2/04 (2nd cast- 2nd go-around) > Hi, > My name is KK. My husband and I have 2 girls. Livi 19mnths and Ava > 3mnths. Ava was born w/bilat CF. I cried when we found out through > US. They looked for it due to me having CF also. I was treated > surgically. Yes, some thirty years ago. I can't tell you how much I > cried thinking about how much she would miss out on her normal > childhood activities. My husband not to familiar with CF. We looked > it up on the internet. After reading up on CF we decided to do the > ponseti method. We interviewed several physicians before birth and > decieded on dupont in DE. I did have several doubts about the course > of treatment at dupont. After reading about ponseti's method and > seeing them treat her I was doubting whether or not they were truly > implementing this method on her. After her second casting her R foot > so dramaticly wrenched, it seems as though it is now stunted. Very > small and wide compared to her L. I read a rant from in > your archieve and definitly decided to seek a 2nd opinion. We are > from PA. and I have been hearing alot about Dr. H. First avail appt. > is in NOV. They will contact me if there is a cancelation. Let's > hope!! Could you guys give me feedback about him, those of you who > do see him? I know some of you see Dr. Ponseti himself, how long > does it take to get there, by car that is if you drive out there. I > was thinking about emailing him a summary of pics and progress to get > his opinion. Ava is now in a DBB, 1 week now. I myself can't put the > shoes on right but my husband gets it everytime. She is in them 23/7. > I can already see the R foot moderately relapsing?? I could go on > but as I said I just wanted to introduce myself and Ava to your group > and thank you for being here and listening to me. I hope to hear > from you. Also can you tell me what the FAB is? Sorry to sound dump > but I'm guessing it's a type of brace???? > > KK > Ava 5/27/04 BCF/DBB-1wk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 KK. I know several have given you info on Dr. Herzenberg, I am adding to the punch. We have been seeing him just a couple of weeks now and couldn't be happier. Definately call Sheila or email Dr. H himself. He will respond ASAP. I know for sure they will get you in before end of Sept. We started with another doc and weren't happy so we switched to Dr. H. It is about a 2 hour drive for us, which I know is less than some others. You can do it! I guarantee you will not be disappointed. I know there are several from this site who started at Dupont in DE and switched to DR. H. Good luck and keep us posted. Also, sometimes Joyce Roller will respond via email for Dr. Ponseti so keep a look out for her email as well. You could also call him directly. and 3/2/04 (2nd cast- 2nd go-around) > Hi, > My name is KK. My husband and I have 2 girls. Livi 19mnths and Ava > 3mnths. Ava was born w/bilat CF. I cried when we found out through > US. They looked for it due to me having CF also. I was treated > surgically. Yes, some thirty years ago. I can't tell you how much I > cried thinking about how much she would miss out on her normal > childhood activities. My husband not to familiar with CF. We looked > it up on the internet. After reading up on CF we decided to do the > ponseti method. We interviewed several physicians before birth and > decieded on dupont in DE. I did have several doubts about the course > of treatment at dupont. After reading about ponseti's method and > seeing them treat her I was doubting whether or not they were truly > implementing this method on her. After her second casting her R foot > so dramaticly wrenched, it seems as though it is now stunted. Very > small and wide compared to her L. I read a rant from in > your archieve and definitly decided to seek a 2nd opinion. We are > from PA. and I have been hearing alot about Dr. H. First avail appt. > is in NOV. They will contact me if there is a cancelation. Let's > hope!! Could you guys give me feedback about him, those of you who > do see him? I know some of you see Dr. Ponseti himself, how long > does it take to get there, by car that is if you drive out there. I > was thinking about emailing him a summary of pics and progress to get > his opinion. Ava is now in a DBB, 1 week now. I myself can't put the > shoes on right but my husband gets it everytime. She is in them 23/7. > I can already see the R foot moderately relapsing?? I could go on > but as I said I just wanted to introduce myself and Ava to your group > and thank you for being here and listening to me. I hope to hear > from you. Also can you tell me what the FAB is? Sorry to sound dump > but I'm guessing it's a type of brace???? > > KK > Ava 5/27/04 BCF/DBB-1wk Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.