Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Hello As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Hello As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 , It's good to hear that things are going so well--even if it is the second time around... If you have concerns about how well-corrected Avery's foot is, you can always send pictures to Dr Ponseti. He will give you an evaluation based on those. He likes to see a picture bearing weight from the back, one from the front and a picture of you dorsiflexing the foot as much as possible (bend her knee 90 degrees, put her foot flat on the palm of your hand then push the foot up so the toes are pointing towards the head). I don't think there is much they can do to really measure " how much " correction has been achieved, but doctors do know (or should know) when a foot is corrected. They can tell by looking at the feet and, especially, by feeling of the bones and making sure they are in the right places and the right alignment. Some doctors will take an x-ray to verify the correction. I think you'll find that Avery can do just about anything with the FAB on. My son, Jonah, was still in his nearly full-time at 9-11 months. He got around very well crawling (in fact, was faster with the FAB than without) and pulled up and climbed stairs. Avery's twin will likely walk before Avery does--and I know that I wouldn't be able to keep myself from comparing if I happened to be in your situation. Don't beat yourself up over it. When you do go back into the FAB, I'd advise you to not go straight from 23 hours a day in the FAB to 12. I think most children respond better to a slower reduction rate, for one thing. For another, the Ponseti protocol calls for a much less drastic reduction at first. Please let us know how the tenotomy goes. Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7) valerie ciccione wrote: Hello As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 , It's good to hear that things are going so well--even if it is the second time around... If you have concerns about how well-corrected Avery's foot is, you can always send pictures to Dr Ponseti. He will give you an evaluation based on those. He likes to see a picture bearing weight from the back, one from the front and a picture of you dorsiflexing the foot as much as possible (bend her knee 90 degrees, put her foot flat on the palm of your hand then push the foot up so the toes are pointing towards the head). I don't think there is much they can do to really measure " how much " correction has been achieved, but doctors do know (or should know) when a foot is corrected. They can tell by looking at the feet and, especially, by feeling of the bones and making sure they are in the right places and the right alignment. Some doctors will take an x-ray to verify the correction. I think you'll find that Avery can do just about anything with the FAB on. My son, Jonah, was still in his nearly full-time at 9-11 months. He got around very well crawling (in fact, was faster with the FAB than without) and pulled up and climbed stairs. Avery's twin will likely walk before Avery does--and I know that I wouldn't be able to keep myself from comparing if I happened to be in your situation. Don't beat yourself up over it. When you do go back into the FAB, I'd advise you to not go straight from 23 hours a day in the FAB to 12. I think most children respond better to a slower reduction rate, for one thing. For another, the Ponseti protocol calls for a much less drastic reduction at first. Please let us know how the tenotomy goes. Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7) valerie ciccione wrote: Hello As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Naomi, Thank you for more encouraging words... we need all we can at this point!! We are so very happy that this has been a good experience this time around ... as it was the first time until we dropped the hours so drastically... she didn't tolerate the shoes once we went from full time to 12/7 so we most definately learned from that experience.... from what I read about reducing hours was that they should do full time (23/7) then go to night time and nap time... the only thing we didn't do was nap time and she wouldn't tolerate them anymore... so I was telling the doctor about slowly reducing the hours and she had said that when she worked and trained with Dr. Ponsetti himself that it was told to her to go from full time to nights only that nothing had been said about nap time but with my experience she is now telling all of her patience that they should slowly reduce their hours so they don't have the same thing happen to them... I had asked her if I had maybe misunderstood about night time only and she said no!! There was a Ponsetti checklist that was posted on here at one time and I was reading that and it didn't give a whole lot of detail about how many hours and for what length of time for the best results. Of course when we went through this the first time we were happy to have the shoes off of her cute little feet all during the day.. well, of course we didn't realize that this kind of situation would happen so you better believe that they will slowly be reduced!! Thank you so much for all of your great advice to everyone!! --------------------------------------------------------------------------------\ --------------------------------------------------------- here is what I had read about the timing for the DBB.... After the last cast is removed, immediate use of the foot abduction brace (FAB, also known as Denis Brown Bar or DBB) is expected. Standard protocol is for the child to wear the foot abduction brace for two to three months full-time (23 hours/day), and then at night-time and naps (16-18 hrs/day), eventually down to about 10-12 hours/day until the child is 3-4 years old. No AFOs (ankle-foot orthotic) or other devices are used for bracing in this method. The risk of relapse is greatest until age 4 or 5. You can ask the doctor about the percentage of their patients that have relapsed, and what protocol is used to treat relapses. --------------------------------------------------------------------------------\ --------------------------------------------------------- Naomi wrote: , It's good to hear that things are going so well--even if it is the second time around... If you have concerns about how well-corrected Avery's foot is, you can always send pictures to Dr Ponseti. He will give you an evaluation based on those. He likes to see a picture bearing weight from the back, one from the front and a picture of you dorsiflexing the foot as much as possible (bend her knee 90 degrees, put her foot flat on the palm of your hand then push the foot up so the toes are pointing towards the head). I don't think there is much they can do to really measure " how much " correction has been achieved, but doctors do know (or should know) when a foot is corrected. They can tell by looking at the feet and, especially, by feeling of the bones and making sure they are in the right places and the right alignment. Some doctors will take an x-ray to verify the correction. I think you'll find that Avery can do just about anything with the FAB on. My son, Jonah, was still in his nearly full-time at 9-11 months. He got around very well crawling (in fact, was faster with the FAB than without) and pulled up and climbed stairs. Avery's twin will likely walk before Avery does--and I know that I wouldn't be able to keep myself from comparing if I happened to be in your situation. Don't beat yourself up over it. When you do go back into the FAB, I'd advise you to not go straight from 23 hours a day in the FAB to 12. I think most children respond better to a slower reduction rate, for one thing. For another, the Ponseti protocol calls for a much less drastic reduction at first. Please let us know how the tenotomy goes. Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7) valerie ciccione wrote: Hello As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Naomi, Thank you for more encouraging words... we need all we can at this point!! We are so very happy that this has been a good experience this time around ... as it was the first time until we dropped the hours so drastically... she didn't tolerate the shoes once we went from full time to 12/7 so we most definately learned from that experience.... from what I read about reducing hours was that they should do full time (23/7) then go to night time and nap time... the only thing we didn't do was nap time and she wouldn't tolerate them anymore... so I was telling the doctor about slowly reducing the hours and she had said that when she worked and trained with Dr. Ponsetti himself that it was told to her to go from full time to nights only that nothing had been said about nap time but with my experience she is now telling all of her patience that they should slowly reduce their hours so they don't have the same thing happen to them... I had asked her if I had maybe misunderstood about night time only and she said no!! There was a Ponsetti checklist that was posted on here at one time and I was reading that and it didn't give a whole lot of detail about how many hours and for what length of time for the best results. Of course when we went through this the first time we were happy to have the shoes off of her cute little feet all during the day.. well, of course we didn't realize that this kind of situation would happen so you better believe that they will slowly be reduced!! Thank you so much for all of your great advice to everyone!! --------------------------------------------------------------------------------\ --------------------------------------------------------- here is what I had read about the timing for the DBB.... After the last cast is removed, immediate use of the foot abduction brace (FAB, also known as Denis Brown Bar or DBB) is expected. Standard protocol is for the child to wear the foot abduction brace for two to three months full-time (23 hours/day), and then at night-time and naps (16-18 hrs/day), eventually down to about 10-12 hours/day until the child is 3-4 years old. No AFOs (ankle-foot orthotic) or other devices are used for bracing in this method. The risk of relapse is greatest until age 4 or 5. You can ask the doctor about the percentage of their patients that have relapsed, and what protocol is used to treat relapses. --------------------------------------------------------------------------------\ --------------------------------------------------------- Naomi wrote: , It's good to hear that things are going so well--even if it is the second time around... If you have concerns about how well-corrected Avery's foot is, you can always send pictures to Dr Ponseti. He will give you an evaluation based on those. He likes to see a picture bearing weight from the back, one from the front and a picture of you dorsiflexing the foot as much as possible (bend her knee 90 degrees, put her foot flat on the palm of your hand then push the foot up so the toes are pointing towards the head). I don't think there is much they can do to really measure " how much " correction has been achieved, but doctors do know (or should know) when a foot is corrected. They can tell by looking at the feet and, especially, by feeling of the bones and making sure they are in the right places and the right alignment. Some doctors will take an x-ray to verify the correction. I think you'll find that Avery can do just about anything with the FAB on. My son, Jonah, was still in his nearly full-time at 9-11 months. He got around very well crawling (in fact, was faster with the FAB than without) and pulled up and climbed stairs. Avery's twin will likely walk before Avery does--and I know that I wouldn't be able to keep myself from comparing if I happened to be in your situation. Don't beat yourself up over it. When you do go back into the FAB, I'd advise you to not go straight from 23 hours a day in the FAB to 12. I think most children respond better to a slower reduction rate, for one thing. For another, the Ponseti protocol calls for a much less drastic reduction at first. Please let us know how the tenotomy goes. Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7) valerie ciccione wrote: Hello As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Hi , I haven't visited the group in a long time, but I saw your post today. I understand the frustration of not crawling or walking. My daughter Grace was treated by a local doctor who did the best he could even though her feet didn't look perfect and she wasn't crawling or walking. She eventually crawled at 14 months old (I think it was held up by her 5 months of castings-which I should have done something different at that point). The doctors said it would be within normal to walk at 20 months, but 20 months came and went. The doctor said we could try re-casting with Botox (which is not part of the protocol). I posted to the group and they suggested contacting Dr. Ponsetti. I did and was amazed when he got back to us right away and said we needed to come see him (just from the photos I e-mailed). We went and he applied two casts and did a second tenotomy under the infulence of Benedryl and we could be in the room with her and no concern of scar tissue. When we took the casts off her feet were beautiful. We wore the bar 23/7 for three months and as soon as we reduced to 16/7 (directed by Dr. Ponsetti) she walked immediately (BECAUSE SHE COULD AND COULD DO IT RIGHT). I have a strong belief that the orthopedic doctors like ours are doing the best they can, but I guess the question is is that good enough for you. I guess my point is follow your instinct if you are not 100% confident with your doctor keep searching and contact Dr. Ponsetti it is easy. It is not often we have the opportunity to meet an angel, but he was one to us. Good luck, > Hello > As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they > don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached > milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Hi , I haven't visited the group in a long time, but I saw your post today. I understand the frustration of not crawling or walking. My daughter Grace was treated by a local doctor who did the best he could even though her feet didn't look perfect and she wasn't crawling or walking. She eventually crawled at 14 months old (I think it was held up by her 5 months of castings-which I should have done something different at that point). The doctors said it would be within normal to walk at 20 months, but 20 months came and went. The doctor said we could try re-casting with Botox (which is not part of the protocol). I posted to the group and they suggested contacting Dr. Ponsetti. I did and was amazed when he got back to us right away and said we needed to come see him (just from the photos I e-mailed). We went and he applied two casts and did a second tenotomy under the infulence of Benedryl and we could be in the room with her and no concern of scar tissue. When we took the casts off her feet were beautiful. We wore the bar 23/7 for three months and as soon as we reduced to 16/7 (directed by Dr. Ponsetti) she walked immediately (BECAUSE SHE COULD AND COULD DO IT RIGHT). I have a strong belief that the orthopedic doctors like ours are doing the best they can, but I guess the question is is that good enough for you. I guess my point is follow your instinct if you are not 100% confident with your doctor keep searching and contact Dr. Ponsetti it is easy. It is not often we have the opportunity to meet an angel, but he was one to us. Good luck, > Hello > As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they > don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached > milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 , I'm glad to hear that Avery is responding so well to the casting! What a relief! I'm sure that she will catch up with her sister in no time once her foot is fixed up! Hey, just curious...did you ever talk to the doctor about the recommended hours in the brace? Daiga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 , I'm glad to hear that Avery is responding so well to the casting! What a relief! I'm sure that she will catch up with her sister in no time once her foot is fixed up! Hey, just curious...did you ever talk to the doctor about the recommended hours in the brace? Daiga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Just wanted to let you know that your message made me feel much better today. I have recently found out that my son has left club foot and have been feeling pretty down. It is good to hear that Doctor Ponseti has been so amazing and my husband and I are seriously considering going to Iowa for treatment so we can be assured that he has had the best. I also have to say what a great group this is. It is so supportive and has helped me immensly during this time. Cheers amazinggracemarie wrote: Hi , I haven't visited the group in a long time, but I saw your post today. I understand the frustration of not crawling or walking. My daughter Grace was treated by a local doctor who did the best he could even though her feet didn't look perfect and she wasn't crawling or walking. She eventually crawled at 14 months old (I think it was held up by her 5 months of castings-which I should have done something different at that point). The doctors said it would be within normal to walk at 20 months, but 20 months came and went. The doctor said we could try re-casting with Botox (which is not part of the protocol). I posted to the group and they suggested contacting Dr. Ponsetti. I did and was amazed when he got back to us right away and said we needed to come see him (just from the photos I e-mailed). We went and he applied two casts and did a second tenotomy under the infulence of Benedryl and we could be in the room with her and no concern of scar tissue. When we took the casts off her feet were beautiful. We wore the bar 23/7 for three months and as soon as we reduced to 16/7 (directed by Dr. Ponsetti) she walked immediately (BECAUSE SHE COULD AND COULD DO IT RIGHT). I have a strong belief that the orthopedic doctors like ours are doing the best they can, but I guess the question is is that good enough for you. I guess my point is follow your instinct if you are not 100% confident with your doctor keep searching and contact Dr. Ponsetti it is easy. It is not often we have the opportunity to meet an angel, but he was one to us. Good luck, > Hello > As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they > don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached > milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Just wanted to let you know that your message made me feel much better today. I have recently found out that my son has left club foot and have been feeling pretty down. It is good to hear that Doctor Ponseti has been so amazing and my husband and I are seriously considering going to Iowa for treatment so we can be assured that he has had the best. I also have to say what a great group this is. It is so supportive and has helped me immensly during this time. Cheers amazinggracemarie wrote: Hi , I haven't visited the group in a long time, but I saw your post today. I understand the frustration of not crawling or walking. My daughter Grace was treated by a local doctor who did the best he could even though her feet didn't look perfect and she wasn't crawling or walking. She eventually crawled at 14 months old (I think it was held up by her 5 months of castings-which I should have done something different at that point). The doctors said it would be within normal to walk at 20 months, but 20 months came and went. The doctor said we could try re-casting with Botox (which is not part of the protocol). I posted to the group and they suggested contacting Dr. Ponsetti. I did and was amazed when he got back to us right away and said we needed to come see him (just from the photos I e-mailed). We went and he applied two casts and did a second tenotomy under the infulence of Benedryl and we could be in the room with her and no concern of scar tissue. When we took the casts off her feet were beautiful. We wore the bar 23/7 for three months and as soon as we reduced to 16/7 (directed by Dr. Ponsetti) she walked immediately (BECAUSE SHE COULD AND COULD DO IT RIGHT). I have a strong belief that the orthopedic doctors like ours are doing the best they can, but I guess the question is is that good enough for you. I guess my point is follow your instinct if you are not 100% confident with your doctor keep searching and contact Dr. Ponsetti it is easy. It is not often we have the opportunity to meet an angel, but he was one to us. Good luck, > Hello > As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they > don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached > milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Hi , Good for you for sticking with it and not doing surgery, TG for this board huh! Glad to hear that things are progressing well but I do have a question, her foot should be casted to an overcorrected position of approx. 70 degrees outward rotation when full correction is achieved, I remember saying " this looks so weird " when Grace's last cast was removed. When you say that her foot looks straight, do you mean that literally? Also, the tenotomy should be preformed as soon as the 2nd to last cast is removed and the final 3-week cast is then applied . Our daughter did not end up needing a tenotomy so I am no expert in this area by any means but I have not heard of the possibility of scar tissue needing to be removed from having one tenotomy, please anyone correct me if I am wrong here. I hope you have a good doctor and that my worries are for naught!!! I also think you will find that Avery Lynn will be not only crawling but pulling up and cruising in no time! If she is up on all fours, she is well on her way, she also has the benefit of a sister to learn from! Our little one went from rocking on all fours to crawling and cruising in under 2 weeks! My advise would be to enjoy chasing after just one while you can hehe! & Grace 07-21-04 Right Unilateral cf FAB 14/7 > Hello > As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they > don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached > milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Hi , Good for you for sticking with it and not doing surgery, TG for this board huh! Glad to hear that things are progressing well but I do have a question, her foot should be casted to an overcorrected position of approx. 70 degrees outward rotation when full correction is achieved, I remember saying " this looks so weird " when Grace's last cast was removed. When you say that her foot looks straight, do you mean that literally? Also, the tenotomy should be preformed as soon as the 2nd to last cast is removed and the final 3-week cast is then applied . Our daughter did not end up needing a tenotomy so I am no expert in this area by any means but I have not heard of the possibility of scar tissue needing to be removed from having one tenotomy, please anyone correct me if I am wrong here. I hope you have a good doctor and that my worries are for naught!!! I also think you will find that Avery Lynn will be not only crawling but pulling up and cruising in no time! If she is up on all fours, she is well on her way, she also has the benefit of a sister to learn from! Our little one went from rocking on all fours to crawling and cruising in under 2 weeks! My advise would be to enjoy chasing after just one while you can hehe! & Grace 07-21-04 Right Unilateral cf FAB 14/7 > Hello > As some of you might already know, we started over with the casting for Avery Lynn about 3 weeks ago and it has gone GREAT!!! We did 2 casts and then when we went to get the 3rd one off and the next one on, the Doctor looked at her foot and thought it looked great and that she is ready to go for the tenotomy (again, and this time she needs to be under anesthesia... just in case there is scare tissue from the last one that needs to be removed)....does that sound like the normal process??? The casting went much faster than I would of expected but we figure since it has already been corrected back in the fall that that is the reason it went quicker.... I am glad that it went faster but just concerned that it is too soon to do the tenotomy... the foot looked straight and perfect to me so I guess it is time... does anyone know if they have a way of measuring the foot to see how much correction has been done?? The Physical Therapist had asked me that and the ortho had said that no they > don't. Anyways, Avery has done very well with the cast (on her left foot only)...she is sitting well and rolling around... it hasn't stopped her from doing any of that but I am very worried about getting the shoes again because that is where everything went wrong the last time.... she tolerated for a couple of months full time but when we went to 12 hours she screamed bloody murder.... so I am hoping and praying that she will tolerate them this time around. I also want to add that she was premature and that she is a little delayed on physical development and going for therapy....she is doing good but she is 11 months today (adjusted age would be 9 months) and she isn't crawling yet but she does support herself on her knees and hands but I think that the casting is delaying her more and also I think the shoes will especially delay her.... anyone else had this problem and have any suggestions....I am more concerned with her having perfect feet rather than worry about when she reached > milestones but it is hard because her twin sister is crawling and pulling up on everything and it is really hard not to compare!!! But I can't tell you how thankful I am that this recasting is going so well..... thank you to ALL of you that posted and encouraged us to do this re-casting stuff because we thought we were going to be doing surgery... BUT WE AREN'T... yeah!! > > > > > > Quote Link to comment Share on other sites More sharing options...
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