Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 , All things considered equal- I think that the causes of relapse at a young age are most likely the same whether the child has surgery or is corrected non-surgically. The doctor cannot predict how the foot will react or the foot components' interaction as the child grows... you probably won't find any surgeon who can guarantee that one surgery will fix the foot 100% for the entire life of the child. Initial correction, maybe, but no " lifetime guarantees " . I asked this of my original doctor also when he said needed the PMR. He said that he couldn't guarantee that she wouldn't need additional surgeries, and couldn't/wouldn't even give me any percentages of his patients who needed maintenance surgeries, and then proceeded to ask if we'd participate in their long-term follow up study on surgical patients. (he'd been treating kids for about 15 years at the time) I think that a child who is corrected non-surgically as an infant most likely wouldn't need surgery as an adult- once they're out of that " growth spurt " stage since the foot components are in the proper position and should function 100% normally. Whereas a child who has surgery as an infant " could " need additional surgery as an adult if the reconstruction was done improperly or if complications occur over time. I think these wouldn't be considered " relapses " though, more like " maintenance " or " corrective " surgeries like you mentioned, and it's probably not as frequent now since surgical techniques have advanced over the years. Regards, > > , > > That's interesting. I wonder how they'll decide in the future on > recommended FAB wear. When we first researched it last year, we thought > it would be until about 2 and a half years. Now it's a little daunting > to think may be in the FAB until he's 4 or 5 to avoid relapse. But > time flies, I can't believe it's already 1 year since he started in > them! I'd much rather do the FAB for longer than have any kind of > surgery, luckily he tolerates them very well. > > I saw my cousin last Sunday for the first time since was born. He > is 32 and was born with unilateral clubfoot. He had serial casting > until a year old and then surgery, he had more surgery at 6 years of > age. It was interesting talking to him about his experiences so far. > > He remembers wearing corrective shoes at night, probably until the age > of 10. I suppose there's also a chance of relapse with surgery - even > though the doctors I spoke to last year told me that their surgery would > be '100% successful in correcting the foot'. I'm not sure if the repeat > surgeries that occur are because of relapse or the foot being restricted > from natural development because of scar tissue, etc? > > My cousin's foot is quite immobile, he can't stand on tiptoe, can't move > it as freely as his normal foot, but he told me that he hasn't really > suffered much pain and is very active in sport (runs, cycles). He said > he's kind of got over his hang-up about the scars on his foot and calf, > but it was quite a problem when he was younger. > > and > 24th Jan 2003, bilateral cf > www.clubfoot.co.za > > > > Re: Thanks so much-one more question > > Antoinette, > When I took my daughter to Iowa for her check up in early March, Dr. > Ponseti and Dr. Morcuende told me that they have been seeing a number > of older children have sudden and severe regression. I'll try to > relay what I overheard- but keep in mind that I'm just a parent. I > don't think this is a new phenomenon, it's just that parents are > doing a better job of taking their children in for follow up > appointments and staying in touch with the doctors more closely, so > the doctors are able to piece together more information since they > have more patients and more thorough records for each patient. It > seems that the working theory is that some children have relapses > between the ages of 3-5 due to a sudden growth spurt where the > muscles/ligaments cannot keep up with the bone growth. For example, > a child's clubfoot was completely corrected and the child stopped > wearing the brace at age 3, but shortly thereafter the child > experienced a quick regression and needed the ATTT procedure by age > 4. Dr. Morcuende said that the severity of the deformity at birth > does not appear to be related to the onset of regression at an older > age. I'm guessing that Tina's latest post about Kavan regressing is > another example of this situation where a sudden growth spurt causes > the foot to relapse. > Try to keep in mind that if the brace is worn as prescribed, the > chance of relapse is 7% or less, but over 70% if it is not worn > diligently. > > I think most relapses happen before age 3 and are related to the > child not wearing the brace as prescribed. It makes sense in my > mind, that the child is growing very quickly between the ages of 1 > and 3, so that's why the brace is important, to maintain the proper > position of the feet as the legs are growing and changing...much like > the occasional growth spurts in the older children- a child under 3 > is in a nearly " constant growth spurt " , making the brace wear that > much more important. > It will be interesting to see if the protocol for brace wear in older > children will change in the near future as the doctors gather more > information about the causes and prevention of regression. > Please remember the comments are just my take on what I heard the > doctors talking about. > Regards, > & (3-16-00) > left clubfoot, switched to Ponseti method at 4 months old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 helo . I leave in Israel where at least one Dr. doesn't put the shoes specifically because he doesn't believe the parents will put them on!!! I know how you feel. In the forum in Hebrew in Israel I try to convince parents to read about the Ponseti method and I must say that it helps. At least one couple in the past 2 month (it is a new forum) moved to the mouthed, and parents to be are not even considering other options. idit. mom to Oshri, 7 month > > > > , > > > > That's interesting. I wonder how they'll decide in the future on > > recommended FAB wear. When we first researched it last year, we > thought > > it would be until about 2 and a half years. Now it's a little > daunting > > to think may be in the FAB until he's 4 or 5 to avoid > relapse. But > > time flies, I can't believe it's already 1 year since he started in > > them! I'd much rather do the FAB for longer than have any > kind of > > surgery, luckily he tolerates them very well. > > > > I saw my cousin last Sunday for the first time since was > born. He > > is 32 and was born with unilateral clubfoot. He had serial casting > > until a year old and then surgery, he had more surgery at 6 years of > > age. It was interesting talking to him about his experiences so > far. > > > > He remembers wearing corrective shoes at night, probably until the > age > > of 10. I suppose there's also a chance of relapse with surgery - > even > > though the doctors I spoke to last year told me that their surgery > would > > be '100% successful in correcting the foot'. I'm not sure if the > repeat > > surgeries that occur are because of relapse or the foot being > restricted > > from natural development because of scar tissue, etc? > > > > My cousin's foot is quite immobile, he can't stand on tiptoe, can't > move > > it as freely as his normal foot, but he told me that he hasn't > really > > suffered much pain and is very active in sport (runs, cycles). He > said > > he's kind of got over his hang-up about the scars on his foot and > calf, > > but it was quite a problem when he was younger. > > > > and > > 24th Jan 2003, bilateral cf > > www.clubfoot.co.za > > > > > > > > Re: Thanks so much-one more question > > > > Antoinette, > > When I took my daughter to Iowa for her check up in early March, > Dr. > > Ponseti and Dr. Morcuende told me that they have been seeing a > number > > of older children have sudden and severe regression. I'll try to > > relay what I overheard- but keep in mind that I'm just a parent. I > > don't think this is a new phenomenon, it's just that parents are > > doing a better job of taking their children in for follow up > > appointments and staying in touch with the doctors more closely, so > > the doctors are able to piece together more information since they > > have more patients and more thorough records for each patient. It > > seems that the working theory is that some children have relapses > > between the ages of 3-5 due to a sudden growth spurt where the > > muscles/ligaments cannot keep up with the bone growth. For > example, > > a child's clubfoot was completely corrected and the child stopped > > wearing the brace at age 3, but shortly thereafter the child > > experienced a quick regression and needed the ATTT procedure by age > > 4. Dr. Morcuende said that the severity of the deformity at birth > > does not appear to be related to the onset of regression at an > older > > age. I'm guessing that Tina's latest post about Kavan regressing > is > > another example of this situation where a sudden growth spurt > causes > > the foot to relapse. > > Try to keep in mind that if the brace is worn as prescribed, the > > chance of relapse is 7% or less, but over 70% if it is not worn > > diligently. > > > > I think most relapses happen before age 3 and are related to the > > child not wearing the brace as prescribed. It makes sense in my > > mind, that the child is growing very quickly between the ages of 1 > > and 3, so that's why the brace is important, to maintain the proper > > position of the feet as the legs are growing and changing...much > like > > the occasional growth spurts in the older children- a child under 3 > > is in a nearly " constant growth spurt " , making the brace wear that > > much more important. > > It will be interesting to see if the protocol for brace wear in > older > > children will change in the near future as the doctors gather more > > information about the causes and prevention of regression. > > Please remember the comments are just my take on what I heard the > > doctors talking about. > > Regards, > > & (3-16-00) > > left clubfoot, switched to Ponseti method at 4 months old > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 , as with most things, I think that education is the key. Certainly, there will always be people who are more than happy to just follow along and listen to a doctors recommendations, be it surgery or not, without researching their options. I think though that the tide is changing in that more people are no longer willing to put their fate (or that of their child) in the hands of one medical professional without at least investigating their options...this is evident with this list! By continuing to reach out and put the information out there so that more parents can educate themselves, you are making great strides to improve the quality of life for many future CF babies in SA! Soon enough those doctors will be forced to sit up and take notice. Daiga > > > > , > > > > That's interesting. I wonder how they'll decide in the future on > > recommended FAB wear. When we first researched it last year, we > thought > > it would be until about 2 and a half years. Now it's a little > daunting > > to think may be in the FAB until he's 4 or 5 to avoid > relapse. But > > time flies, I can't believe it's already 1 year since he started in > > them! I'd much rather do the FAB for longer than have any > kind of > > surgery, luckily he tolerates them very well. > > > > I saw my cousin last Sunday for the first time since was > born. He > > is 32 and was born with unilateral clubfoot. He had serial casting > > until a year old and then surgery, he had more surgery at 6 years of > > age. It was interesting talking to him about his experiences so > far. > > > > He remembers wearing corrective shoes at night, probably until the > age > > of 10. I suppose there's also a chance of relapse with surgery - > even > > though the doctors I spoke to last year told me that their surgery > would > > be '100% successful in correcting the foot'. I'm not sure if the > repeat > > surgeries that occur are because of relapse or the foot being > restricted > > from natural development because of scar tissue, etc? > > > > My cousin's foot is quite immobile, he can't stand on tiptoe, can't > move > > it as freely as his normal foot, but he told me that he hasn't > really > > suffered much pain and is very active in sport (runs, cycles). He > said > > he's kind of got over his hang-up about the scars on his foot and > calf, > > but it was quite a problem when he was younger. > > > > and > > 24th Jan 2003, bilateral cf > > www.clubfoot.co.za > > > > > > > > Re: Thanks so much-one more question > > > > Antoinette, > > When I took my daughter to Iowa for her check up in early March, > Dr. > > Ponseti and Dr. Morcuende told me that they have been seeing a > number > > of older children have sudden and severe regression. I'll try to > > relay what I overheard- but keep in mind that I'm just a parent. I > > don't think this is a new phenomenon, it's just that parents are > > doing a better job of taking their children in for follow up > > appointments and staying in touch with the doctors more closely, so > > the doctors are able to piece together more information since they > > have more patients and more thorough records for each patient. It > > seems that the working theory is that some children have relapses > > between the ages of 3-5 due to a sudden growth spurt where the > > muscles/ligaments cannot keep up with the bone growth. For > example, > > a child's clubfoot was completely corrected and the child stopped > > wearing the brace at age 3, but shortly thereafter the child > > experienced a quick regression and needed the ATTT procedure by age > > 4. Dr. Morcuende said that the severity of the deformity at birth > > does not appear to be related to the onset of regression at an > older > > age. I'm guessing that Tina's latest post about Kavan regressing > is > > another example of this situation where a sudden growth spurt > causes > > the foot to relapse. > > Try to keep in mind that if the brace is worn as prescribed, the > > chance of relapse is 7% or less, but over 70% if it is not worn > > diligently. > > > > I think most relapses happen before age 3 and are related to the > > child not wearing the brace as prescribed. It makes sense in my > > mind, that the child is growing very quickly between the ages of 1 > > and 3, so that's why the brace is important, to maintain the proper > > position of the feet as the legs are growing and changing...much > like > > the occasional growth spurts in the older children- a child under 3 > > is in a nearly " constant growth spurt " , making the brace wear that > > much more important. > > It will be interesting to see if the protocol for brace wear in > older > > children will change in the near future as the doctors gather more > > information about the causes and prevention of regression. > > Please remember the comments are just my take on what I heard the > > doctors talking about. > > Regards, > > & (3-16-00) > > left clubfoot, switched to Ponseti method at 4 months old > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 , as with most things, I think that education is the key. Certainly, there will always be people who are more than happy to just follow along and listen to a doctors recommendations, be it surgery or not, without researching their options. I think though that the tide is changing in that more people are no longer willing to put their fate (or that of their child) in the hands of one medical professional without at least investigating their options...this is evident with this list! By continuing to reach out and put the information out there so that more parents can educate themselves, you are making great strides to improve the quality of life for many future CF babies in SA! Soon enough those doctors will be forced to sit up and take notice. Daiga > > > > , > > > > That's interesting. I wonder how they'll decide in the future on > > recommended FAB wear. When we first researched it last year, we > thought > > it would be until about 2 and a half years. Now it's a little > daunting > > to think may be in the FAB until he's 4 or 5 to avoid > relapse. But > > time flies, I can't believe it's already 1 year since he started in > > them! I'd much rather do the FAB for longer than have any > kind of > > surgery, luckily he tolerates them very well. > > > > I saw my cousin last Sunday for the first time since was > born. He > > is 32 and was born with unilateral clubfoot. He had serial casting > > until a year old and then surgery, he had more surgery at 6 years of > > age. It was interesting talking to him about his experiences so > far. > > > > He remembers wearing corrective shoes at night, probably until the > age > > of 10. I suppose there's also a chance of relapse with surgery - > even > > though the doctors I spoke to last year told me that their surgery > would > > be '100% successful in correcting the foot'. I'm not sure if the > repeat > > surgeries that occur are because of relapse or the foot being > restricted > > from natural development because of scar tissue, etc? > > > > My cousin's foot is quite immobile, he can't stand on tiptoe, can't > move > > it as freely as his normal foot, but he told me that he hasn't > really > > suffered much pain and is very active in sport (runs, cycles). He > said > > he's kind of got over his hang-up about the scars on his foot and > calf, > > but it was quite a problem when he was younger. > > > > and > > 24th Jan 2003, bilateral cf > > www.clubfoot.co.za > > > > > > > > Re: Thanks so much-one more question > > > > Antoinette, > > When I took my daughter to Iowa for her check up in early March, > Dr. > > Ponseti and Dr. Morcuende told me that they have been seeing a > number > > of older children have sudden and severe regression. I'll try to > > relay what I overheard- but keep in mind that I'm just a parent. I > > don't think this is a new phenomenon, it's just that parents are > > doing a better job of taking their children in for follow up > > appointments and staying in touch with the doctors more closely, so > > the doctors are able to piece together more information since they > > have more patients and more thorough records for each patient. It > > seems that the working theory is that some children have relapses > > between the ages of 3-5 due to a sudden growth spurt where the > > muscles/ligaments cannot keep up with the bone growth. For > example, > > a child's clubfoot was completely corrected and the child stopped > > wearing the brace at age 3, but shortly thereafter the child > > experienced a quick regression and needed the ATTT procedure by age > > 4. Dr. Morcuende said that the severity of the deformity at birth > > does not appear to be related to the onset of regression at an > older > > age. I'm guessing that Tina's latest post about Kavan regressing > is > > another example of this situation where a sudden growth spurt > causes > > the foot to relapse. > > Try to keep in mind that if the brace is worn as prescribed, the > > chance of relapse is 7% or less, but over 70% if it is not worn > > diligently. > > > > I think most relapses happen before age 3 and are related to the > > child not wearing the brace as prescribed. It makes sense in my > > mind, that the child is growing very quickly between the ages of 1 > > and 3, so that's why the brace is important, to maintain the proper > > position of the feet as the legs are growing and changing...much > like > > the occasional growth spurts in the older children- a child under 3 > > is in a nearly " constant growth spurt " , making the brace wear that > > much more important. > > It will be interesting to see if the protocol for brace wear in > older > > children will change in the near future as the doctors gather more > > information about the causes and prevention of regression. > > Please remember the comments are just my take on what I heard the > > doctors talking about. > > Regards, > > & (3-16-00) > > left clubfoot, switched to Ponseti method at 4 months old > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 , as with most things, I think that education is the key. Certainly, there will always be people who are more than happy to just follow along and listen to a doctors recommendations, be it surgery or not, without researching their options. I think though that the tide is changing in that more people are no longer willing to put their fate (or that of their child) in the hands of one medical professional without at least investigating their options...this is evident with this list! By continuing to reach out and put the information out there so that more parents can educate themselves, you are making great strides to improve the quality of life for many future CF babies in SA! Soon enough those doctors will be forced to sit up and take notice. Daiga > > > > , > > > > That's interesting. I wonder how they'll decide in the future on > > recommended FAB wear. When we first researched it last year, we > thought > > it would be until about 2 and a half years. Now it's a little > daunting > > to think may be in the FAB until he's 4 or 5 to avoid > relapse. But > > time flies, I can't believe it's already 1 year since he started in > > them! I'd much rather do the FAB for longer than have any > kind of > > surgery, luckily he tolerates them very well. > > > > I saw my cousin last Sunday for the first time since was > born. He > > is 32 and was born with unilateral clubfoot. He had serial casting > > until a year old and then surgery, he had more surgery at 6 years of > > age. It was interesting talking to him about his experiences so > far. > > > > He remembers wearing corrective shoes at night, probably until the > age > > of 10. I suppose there's also a chance of relapse with surgery - > even > > though the doctors I spoke to last year told me that their surgery > would > > be '100% successful in correcting the foot'. I'm not sure if the > repeat > > surgeries that occur are because of relapse or the foot being > restricted > > from natural development because of scar tissue, etc? > > > > My cousin's foot is quite immobile, he can't stand on tiptoe, can't > move > > it as freely as his normal foot, but he told me that he hasn't > really > > suffered much pain and is very active in sport (runs, cycles). He > said > > he's kind of got over his hang-up about the scars on his foot and > calf, > > but it was quite a problem when he was younger. > > > > and > > 24th Jan 2003, bilateral cf > > www.clubfoot.co.za > > > > > > > > Re: Thanks so much-one more question > > > > Antoinette, > > When I took my daughter to Iowa for her check up in early March, > Dr. > > Ponseti and Dr. Morcuende told me that they have been seeing a > number > > of older children have sudden and severe regression. I'll try to > > relay what I overheard- but keep in mind that I'm just a parent. I > > don't think this is a new phenomenon, it's just that parents are > > doing a better job of taking their children in for follow up > > appointments and staying in touch with the doctors more closely, so > > the doctors are able to piece together more information since they > > have more patients and more thorough records for each patient. It > > seems that the working theory is that some children have relapses > > between the ages of 3-5 due to a sudden growth spurt where the > > muscles/ligaments cannot keep up with the bone growth. For > example, > > a child's clubfoot was completely corrected and the child stopped > > wearing the brace at age 3, but shortly thereafter the child > > experienced a quick regression and needed the ATTT procedure by age > > 4. Dr. Morcuende said that the severity of the deformity at birth > > does not appear to be related to the onset of regression at an > older > > age. I'm guessing that Tina's latest post about Kavan regressing > is > > another example of this situation where a sudden growth spurt > causes > > the foot to relapse. > > Try to keep in mind that if the brace is worn as prescribed, the > > chance of relapse is 7% or less, but over 70% if it is not worn > > diligently. > > > > I think most relapses happen before age 3 and are related to the > > child not wearing the brace as prescribed. It makes sense in my > > mind, that the child is growing very quickly between the ages of 1 > > and 3, so that's why the brace is important, to maintain the proper > > position of the feet as the legs are growing and changing...much > like > > the occasional growth spurts in the older children- a child under 3 > > is in a nearly " constant growth spurt " , making the brace wear that > > much more important. > > It will be interesting to see if the protocol for brace wear in > older > > children will change in the near future as the doctors gather more > > information about the causes and prevention of regression. > > Please remember the comments are just my take on what I heard the > > doctors talking about. > > Regards, > > & (3-16-00) > > left clubfoot, switched to Ponseti method at 4 months old > > > > Quote Link to comment Share on other sites More sharing options...
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