Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 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, I bet if you talked to the *right* person at Dr. Herzenberg's office it wouldn't be Nov for the first appointment. I remember others getting that too, but that's just the std. waiting for an appointment This is URGENT and someone here will help you to talk to the right person there. When they call back and make it clear they're in for a CF second opinion on an older baby... the appointment is much sooner. I think you're on the right track. And everyone loves Dr. H. Things will work out! Welcome to the list! Kori At 06:58 AM 9/1/2004, you wrote: >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, I bet if you talked to the *right* person at Dr. Herzenberg's office it wouldn't be Nov for the first appointment. I remember others getting that too, but that's just the std. waiting for an appointment This is URGENT and someone here will help you to talk to the right person there. When they call back and make it clear they're in for a CF second opinion on an older baby... the appointment is much sooner. I think you're on the right track. And everyone loves Dr. H. Things will work out! Welcome to the list! Kori At 06:58 AM 9/1/2004, you wrote: >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, Welcome to the group and congratulations on your new baby girl! If I were you, I wouldn't wait until the November appointment to see Dr Herzenberg. There have been people on here before who were given 'far-off' appointments, but when they spoke to someone on his Ponseti method team and explained the situation they could see him almost immediately. Someone here will be able to give you the names of who to speak to, I can't remember the exact details. Dr Ponseti recommends early treatment if possible, although it can be done successfully later in many cases, it's easier to manipulate the foot while it's still really flexible. We switched to Dr Ponseti when was 10 weeks old after unsuccessful non-Ponseti serial casting. is now 19 months old and his feet look absolutely amazing. He runs everywhere, stands on tiptoe, his feet are incredibly flexible. So you don't have to worry that your daughter might have the same experience as you, she will be just fine after a few casts. The FAB stands for Foot Abduction Brace, which is like the DBB, but the FAB is what Dr Ponseti calls it. He told us that strictly speaking it isn't called a DBB because he has made modifications to the original so it works better for his method. After her feet are fully corrected, your daughter will wear it for 3 months almost full time and after that the wear time is reduced until it's only when she sleeps - about 12-14 hours a day Please email this list with any questions you have through the process, the people here are wonderful. Our trip last April to Iowa was all the way from South Africa and I don't think it would have been half as easy as it was if we hadn't had the support of this group at a time when only a couple of people in our country had even heard of the Ponseti Method. When we got back home I designed a website to provide parents with information. www.clubfoot.co.za It's mainly geared for South Africa, but I have people on it from all over the world, so you might find it useful too. Our story is on there as well as a link to Dr Ponseti's site, our hints and tips, checklist, etc, etc. Good luck, and take heart that you are on the right path. and 24th Jan 2003, bilateral cf www.clubfoot.co.za 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 1, 2004 Report Share Posted September 1, 2004 Hi KK, Welcome to the group and congratulations on your new baby girl! If I were you, I wouldn't wait until the November appointment to see Dr Herzenberg. There have been people on here before who were given 'far-off' appointments, but when they spoke to someone on his Ponseti method team and explained the situation they could see him almost immediately. Someone here will be able to give you the names of who to speak to, I can't remember the exact details. Dr Ponseti recommends early treatment if possible, although it can be done successfully later in many cases, it's easier to manipulate the foot while it's still really flexible. We switched to Dr Ponseti when was 10 weeks old after unsuccessful non-Ponseti serial casting. is now 19 months old and his feet look absolutely amazing. He runs everywhere, stands on tiptoe, his feet are incredibly flexible. So you don't have to worry that your daughter might have the same experience as you, she will be just fine after a few casts. The FAB stands for Foot Abduction Brace, which is like the DBB, but the FAB is what Dr Ponseti calls it. He told us that strictly speaking it isn't called a DBB because he has made modifications to the original so it works better for his method. After her feet are fully corrected, your daughter will wear it for 3 months almost full time and after that the wear time is reduced until it's only when she sleeps - about 12-14 hours a day Please email this list with any questions you have through the process, the people here are wonderful. Our trip last April to Iowa was all the way from South Africa and I don't think it would have been half as easy as it was if we hadn't had the support of this group at a time when only a couple of people in our country had even heard of the Ponseti Method. When we got back home I designed a website to provide parents with information. www.clubfoot.co.za It's mainly geared for South Africa, but I have people on it from all over the world, so you might find it useful too. Our story is on there as well as a link to Dr Ponseti's site, our hints and tips, checklist, etc, etc. Good luck, and take heart that you are on the right path. and 24th Jan 2003, bilateral cf www.clubfoot.co.za 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...
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