Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Hello everybody, I am e from Italy, father of Alessandro (almost 4 months) with congenital bilateral clubfoot. I recently joined this list as my baby is being treated according to Ponseti method but, as almost everyone, I am experiencing problems with the DDB. The casts went well (6) and so the tenotomy now it's the DDB time! Well, I can say that during the day, Alessandro is doing well but he can't stand it in the night when I am forced to take it away (when I do so, he sleeps in a minute), However I know that the DDB has to be worn 23 hours a day but it seems impossible. What I have noted is that, with time, the foot tends to slip from the shoe (sometimes the left, sometimes the right) and I re-adjust it. It is strange because the shoe is very tightened and I use two pairs of cotton socks. I checked with Markell measurement sheet if the size is correct and it seems so (the size is M00), so it remains to check if the bar is the same length of the shoulders. How do I measure it? Should I consider the distance between heels and compare it with shoulders? Should the bar length be something more? I really can't think about other causes, maybe could be also that the correction has been lost? Consider that a week has passed between the 3-week cast removal and the installation of the brace (the feet were blistered). We talk to the doctor and he told us to change the shoes however, you should know that Ponseti method in Italy is virtually unknown: there is a doctor in Rome who studied with Ponseti (but I am in Milan) and another who is applying the method in my city but with a relatively little experience. Obviously, we are fully aware of Ponseti procedure and we discussed a lot of issues with the doctor but he is following many patients and I believe he can't dedicate the correct amount of time to everybody. I know that Dr. Ponseti replies to emails promptly, here, the italian doctors do not return calls... Anyway, 99% of italian babies with clubfoot is treated with surgery, therefore I am lucky but still experiencing problems with DDB with the result of making another cast as correction is not good as it should be. One last thing: do you suggest to switch to Ponseti/ AFO which seems to be better (I read some positive comments in some email today)? Do you have any tips about avoiding feet slipping that I can discuss with doctors? Thanks e ___________________________________________________________ To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. http://uk.security.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Hello everybody, I am e from Italy, father of Alessandro (almost 4 months) with congenital bilateral clubfoot. I recently joined this list as my baby is being treated according to Ponseti method but, as almost everyone, I am experiencing problems with the DDB. The casts went well (6) and so the tenotomy now it's the DDB time! Well, I can say that during the day, Alessandro is doing well but he can't stand it in the night when I am forced to take it away (when I do so, he sleeps in a minute), However I know that the DDB has to be worn 23 hours a day but it seems impossible. What I have noted is that, with time, the foot tends to slip from the shoe (sometimes the left, sometimes the right) and I re-adjust it. It is strange because the shoe is very tightened and I use two pairs of cotton socks. I checked with Markell measurement sheet if the size is correct and it seems so (the size is M00), so it remains to check if the bar is the same length of the shoulders. How do I measure it? Should I consider the distance between heels and compare it with shoulders? Should the bar length be something more? I really can't think about other causes, maybe could be also that the correction has been lost? Consider that a week has passed between the 3-week cast removal and the installation of the brace (the feet were blistered). We talk to the doctor and he told us to change the shoes however, you should know that Ponseti method in Italy is virtually unknown: there is a doctor in Rome who studied with Ponseti (but I am in Milan) and another who is applying the method in my city but with a relatively little experience. Obviously, we are fully aware of Ponseti procedure and we discussed a lot of issues with the doctor but he is following many patients and I believe he can't dedicate the correct amount of time to everybody. I know that Dr. Ponseti replies to emails promptly, here, the italian doctors do not return calls... Anyway, 99% of italian babies with clubfoot is treated with surgery, therefore I am lucky but still experiencing problems with DDB with the result of making another cast as correction is not good as it should be. One last thing: do you suggest to switch to Ponseti/ AFO which seems to be better (I read some positive comments in some email today)? Do you have any tips about avoiding feet slipping that I can discuss with doctors? Thanks e ___________________________________________________________ To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. http://uk.security.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Hi e, > I recently joined this list as my baby is being > treated according to Ponseti method but, as almost > everyone, I am experiencing problems with the DDB. I think that most babies are fine with the DBB. The reason that it seems otherwise is that obviously only the ones with problems are writing to this list since there isn't much reason to write otherwise... I just thought I'd mention this in case any new parents are getting worried. Unfortunately I can't give you any real tips since my son never had a problems with the DBB at all (he's still wearing it now at age 3). I think that the smallest size is 0000 though, maybe your son's shoes are too big? Or he has already lost some correction as you said. The easiest way to measure the bar length is to hold it up to your son's shoulders. The heels of the shoes should be at the ends of the shoulders. > One last thing: do you suggest to switch to > Ponseti/ AFO which seems to be better (I > read some positive comments in some email today)? Just to avoid confusion, the shoes with the bar are called FAB (or DBB which strictly speaking is not correct). AFO's are something different (I think there are parents using AFO's connected with a bar though, the bar is the important bit about it). Some people seem to find that the brace stays on better and avoids blisters so it might be worth a try but they are more expensive. All the best, with (*9/02) and Alister (*9/02, RCF, Ponseti method, UK) ___________________________________________________________ How much free photo storage do you get? Store your holiday snaps for FREE with Yahoo! Photos http://uk.photos.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Hi e, > I recently joined this list as my baby is being > treated according to Ponseti method but, as almost > everyone, I am experiencing problems with the DDB. I think that most babies are fine with the DBB. The reason that it seems otherwise is that obviously only the ones with problems are writing to this list since there isn't much reason to write otherwise... I just thought I'd mention this in case any new parents are getting worried. Unfortunately I can't give you any real tips since my son never had a problems with the DBB at all (he's still wearing it now at age 3). I think that the smallest size is 0000 though, maybe your son's shoes are too big? Or he has already lost some correction as you said. The easiest way to measure the bar length is to hold it up to your son's shoulders. The heels of the shoes should be at the ends of the shoulders. > One last thing: do you suggest to switch to > Ponseti/ AFO which seems to be better (I > read some positive comments in some email today)? Just to avoid confusion, the shoes with the bar are called FAB (or DBB which strictly speaking is not correct). AFO's are something different (I think there are parents using AFO's connected with a bar though, the bar is the important bit about it). Some people seem to find that the brace stays on better and avoids blisters so it might be worth a try but they are more expensive. All the best, with (*9/02) and Alister (*9/02, RCF, Ponseti method, UK) ___________________________________________________________ How much free photo storage do you get? Store your holiday snaps for FREE with Yahoo! Photos http://uk.photos.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Welcome e and Alessandro! You mention that your son does not have problems during the day with the shoes/bar aka FAB. Does he nap ok in it? I ask this because maybe he can not get comfortable in the fab at night to sleep. My son is a side sleeper-so for the first couple of months until he could balance it on its side without rolling over, we built a cushion pile-some towels rolled up in a pillow case so that when he laid on his side-he had something to rest it on and this really helped. Just make sure its not near his head!! He now sleeps on his side or his back or his tummy-all sorts of weird configuration. I think we just need to figure out how to keep your son comfortable. Another thought is to roll a blanket or towel and lay it under either his hips or knees-thus taking the weight of the fab off his body. If you go to the files section of this group-you will see a folder that says FAB assistance-in that file is a tips/tricks document-its in 2 formats-one a pdf and one a word document. THis too can provide you with some helpful information. Hope this helps to happy sleeping baby! Kathleen mom to bcf 8/28/04 fab 12/7 > > Hello everybody, > > I am e from Italy, father of Alessandro (almost 4 > months) with congenital bilateral clubfoot. I recently > joined this list as my baby is being treated according > to Ponseti method but, as almost everyone, I am > experiencing problems with the DDB. > The casts went well (6) and so the tenotomy now it's > the DDB time! Well, I can say that during the day, > Alessandro is doing well but he can't stand it in the > night when I am forced to take it away (when I do so, > he sleeps in a minute), However I know that the DDB > has to be worn 23 hours a day but it seems impossible. > What I have noted is that, with time, the foot tends > to slip from the shoe (sometimes the left, sometimes > the right) and I re-adjust it. It is strange because > the shoe is very tightened and I use two pairs of > cotton socks. I checked with Markell measurement sheet > if the size is correct and it seems so (the size is > M00), so it remains to check if the bar is the same > length of the shoulders. How do I measure it? Should I > consider the distance between heels and compare it > with shoulders? Should the bar length be something > more? > I really can't think about other causes, maybe could > be also that the correction has been lost? Consider > that a week has passed between the 3-week cast removal > and the installation of the brace (the feet were > blistered). > We talk to the doctor and he told us to change the > shoes however, you should know that Ponseti method in > Italy is virtually unknown: there is a doctor in Rome > who studied with Ponseti (but I am in Milan) and > another who is applying the method in my city but with > a relatively little experience. Obviously, we are > fully aware of Ponseti procedure and we discussed a > lot of issues with the doctor but he is following many > patients and I believe he can't dedicate the correct > amount of time to everybody. I know that Dr. Ponseti > replies to emails promptly, here, the italian doctors > do not return calls... > Anyway, 99% of italian babies with clubfoot is treated > with surgery, therefore I am lucky but still > experiencing problems with DDB with the result of > making another cast as correction is not good as it > should be. > One last thing: do you suggest to switch to > Ponseti/ AFO which seems to be better (I read > some positive comments in some email today)? > > Do you have any tips about avoiding feet slipping that > I can discuss with doctors? > Thanks > e > > > > ___________________________________________________________ > To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. http://uk.security.yahoo.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Welcome e and Alessandro! You mention that your son does not have problems during the day with the shoes/bar aka FAB. Does he nap ok in it? I ask this because maybe he can not get comfortable in the fab at night to sleep. My son is a side sleeper-so for the first couple of months until he could balance it on its side without rolling over, we built a cushion pile-some towels rolled up in a pillow case so that when he laid on his side-he had something to rest it on and this really helped. Just make sure its not near his head!! He now sleeps on his side or his back or his tummy-all sorts of weird configuration. I think we just need to figure out how to keep your son comfortable. Another thought is to roll a blanket or towel and lay it under either his hips or knees-thus taking the weight of the fab off his body. If you go to the files section of this group-you will see a folder that says FAB assistance-in that file is a tips/tricks document-its in 2 formats-one a pdf and one a word document. THis too can provide you with some helpful information. Hope this helps to happy sleeping baby! Kathleen mom to bcf 8/28/04 fab 12/7 > > Hello everybody, > > I am e from Italy, father of Alessandro (almost 4 > months) with congenital bilateral clubfoot. I recently > joined this list as my baby is being treated according > to Ponseti method but, as almost everyone, I am > experiencing problems with the DDB. > The casts went well (6) and so the tenotomy now it's > the DDB time! Well, I can say that during the day, > Alessandro is doing well but he can't stand it in the > night when I am forced to take it away (when I do so, > he sleeps in a minute), However I know that the DDB > has to be worn 23 hours a day but it seems impossible. > What I have noted is that, with time, the foot tends > to slip from the shoe (sometimes the left, sometimes > the right) and I re-adjust it. It is strange because > the shoe is very tightened and I use two pairs of > cotton socks. I checked with Markell measurement sheet > if the size is correct and it seems so (the size is > M00), so it remains to check if the bar is the same > length of the shoulders. How do I measure it? Should I > consider the distance between heels and compare it > with shoulders? Should the bar length be something > more? > I really can't think about other causes, maybe could > be also that the correction has been lost? Consider > that a week has passed between the 3-week cast removal > and the installation of the brace (the feet were > blistered). > We talk to the doctor and he told us to change the > shoes however, you should know that Ponseti method in > Italy is virtually unknown: there is a doctor in Rome > who studied with Ponseti (but I am in Milan) and > another who is applying the method in my city but with > a relatively little experience. Obviously, we are > fully aware of Ponseti procedure and we discussed a > lot of issues with the doctor but he is following many > patients and I believe he can't dedicate the correct > amount of time to everybody. I know that Dr. Ponseti > replies to emails promptly, here, the italian doctors > do not return calls... > Anyway, 99% of italian babies with clubfoot is treated > with surgery, therefore I am lucky but still > experiencing problems with DDB with the result of > making another cast as correction is not good as it > should be. > One last thing: do you suggest to switch to > Ponseti/ AFO which seems to be better (I read > some positive comments in some email today)? > > Do you have any tips about avoiding feet slipping that > I can discuss with doctors? > Thanks > e > > > > ___________________________________________________________ > To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. http://uk.security.yahoo.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 e, Let me get this straight: Your son went three weeks with no casts and not DBB, is that correct? If so, then he very well could have lost correction, making the DBB cause him further pain and slip off. What are the chances your dr. would recast him to re-gain the correction now? If he went 3 weeks with neither a cast nor a brace he probably needs another cast or two, then go directly in to the DBB the day the last cast comes off. However - if your son is tolerating the brace well all day long and only suffers issues at night, perhaps it's just an adjustment phase he needs to work though. Helping him find a comfortable way to lay could be useful - such as propping him in a baby seat or baby swing or something more up right for a while till he's a bit bigger and able to move more independently in his bed. If it's just a night issue, he could be getting tangled up in his covers and waking up, or hitting his bar against the sides of the crib/cradle, waking himself up. Instead of a blanket most of us here try to use a sleep sack which keeps baby warm with out blankets and offers some padding against racking the bar against the sides of the bed. You say he had blisters. Did the brace cause the blisters? In that case he should have been casted while they healed. Lots of time a brace causes blisters when it doesn't fit right - and often it does not fit right if the foot was not yet ready to be braced .... that is to say, the foot was not fully corrected prior to bracing. Could that be the case? Double socks may be causing the shoes to slip rather than helping to hold them on. It's worth a try anyway. The heels should be shoulder width - this does not have to be extremely exact, but pretty close. It is hard to measure a baby's shoulder width when they are not able to sit up straight nor hold still, but try to measure from the outside edge of each shoulder and adjust the bar according to that. There's a certain amount of eye-balling (guess work) to this. You'll measure the brace from the screws on the bottom of the bar. Are the shoes adjusted out at 70 degrees? They should be. If at all possible try to coospond with the dr's at the University of Iowa, either Dr. Ponseti or one of his colleagues there are all dependable; perhaps you could also send pictures of your son's feet with the message. Even better, try to get YOUR doctor to also speak with Ponseti. I'm sorry there is no easy answer to your problem, there are many variables to consider and with out having our hands on the baby and the brace all we can do is speculate. Keep us informed if any of this helps or you have other problems or ideas. Are you aware of the Tip Sheet available on the Files Section of this group? It's full of useful information to make brace use easier on the parents and babies. Best Wishes! s. ----- Original Message ----- From@y...> wrote: > > Hello everybody, > > I am e from Italy, father of Alessandro (almost 4 > months) with congenital bilateral clubfoot. I recently > joined this list as my baby is being treated according > to Ponseti method but, as almost everyone, I am > experiencing problems with the DDB. > The casts went well (6) and so the tenotomy now it's > the DDB time! Well, I can say that during the day, > Alessandro is doing well but he can't stand it in the > night when I am forced to take it away (when I do so, > he sleeps in a minute), However I know that the DDB > has to be worn 23 hours a day but it seems impossible. > What I have noted is that, with time, the foot tends > to slip from the shoe (sometimes the left, sometimes > the right) and I re-adjust it. It is strange because > the shoe is very tightened and I use two pairs of > cotton socks. I checked with Markell measurement sheet > if the size is correct and it seems so (the size is > M00), so it remains to check if the bar is the same > length of the shoulders. How do I measure it? Should I > consider the distance between heels and compare it > with shoulders? Should the bar length be something > more? > I really can't think about other causes, maybe could > be also that the correction has been lost? Consider > that a week has passed between the 3-week cast removal > and the installation of the brace (the feet were > blistered). > We talk to the doctor and he told us to change the > shoes however, you should know that Ponseti method in > Italy is virtually unknown: there is a doctor in Rome > who studied with Ponseti (but I am in Milan) and > another who is applying the method in my city but with > a relatively little experience. Obviously, we are > fully aware of Ponseti procedure and we discussed a > lot of issues with the doctor but he is following many > patients and I believe he can't dedicate the correct > amount of time to everybody. I know that Dr. Ponseti > replies to emails promptly, here, the italian doctors > do not return calls... > Anyway, 99% of italian babies with clubfoot is treated > with surgery, therefore I am lucky but still > experiencing problems with DDB with the result of > making another cast as correction is not good as it > should be. > One last thing: do you suggest to switch to > Ponseti/ AFO which seems to be better (I read > some positive comments in some email today)? > > Do you have any tips about avoiding feet slipping that > I can discuss with doctors? > Thanks > e > > > > ___________________________________________________________ > To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. http://uk.security.yahoo.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 e, Let me get this straight: Your son went three weeks with no casts and not DBB, is that correct? If so, then he very well could have lost correction, making the DBB cause him further pain and slip off. What are the chances your dr. would recast him to re-gain the correction now? If he went 3 weeks with neither a cast nor a brace he probably needs another cast or two, then go directly in to the DBB the day the last cast comes off. However - if your son is tolerating the brace well all day long and only suffers issues at night, perhaps it's just an adjustment phase he needs to work though. Helping him find a comfortable way to lay could be useful - such as propping him in a baby seat or baby swing or something more up right for a while till he's a bit bigger and able to move more independently in his bed. If it's just a night issue, he could be getting tangled up in his covers and waking up, or hitting his bar against the sides of the crib/cradle, waking himself up. Instead of a blanket most of us here try to use a sleep sack which keeps baby warm with out blankets and offers some padding against racking the bar against the sides of the bed. You say he had blisters. Did the brace cause the blisters? In that case he should have been casted while they healed. Lots of time a brace causes blisters when it doesn't fit right - and often it does not fit right if the foot was not yet ready to be braced .... that is to say, the foot was not fully corrected prior to bracing. Could that be the case? Double socks may be causing the shoes to slip rather than helping to hold them on. It's worth a try anyway. The heels should be shoulder width - this does not have to be extremely exact, but pretty close. It is hard to measure a baby's shoulder width when they are not able to sit up straight nor hold still, but try to measure from the outside edge of each shoulder and adjust the bar according to that. There's a certain amount of eye-balling (guess work) to this. You'll measure the brace from the screws on the bottom of the bar. Are the shoes adjusted out at 70 degrees? They should be. If at all possible try to coospond with the dr's at the University of Iowa, either Dr. Ponseti or one of his colleagues there are all dependable; perhaps you could also send pictures of your son's feet with the message. Even better, try to get YOUR doctor to also speak with Ponseti. I'm sorry there is no easy answer to your problem, there are many variables to consider and with out having our hands on the baby and the brace all we can do is speculate. Keep us informed if any of this helps or you have other problems or ideas. Are you aware of the Tip Sheet available on the Files Section of this group? It's full of useful information to make brace use easier on the parents and babies. Best Wishes! s. ----- Original Message ----- From@y...> wrote: > > Hello everybody, > > I am e from Italy, father of Alessandro (almost 4 > months) with congenital bilateral clubfoot. I recently > joined this list as my baby is being treated according > to Ponseti method but, as almost everyone, I am > experiencing problems with the DDB. > The casts went well (6) and so the tenotomy now it's > the DDB time! Well, I can say that during the day, > Alessandro is doing well but he can't stand it in the > night when I am forced to take it away (when I do so, > he sleeps in a minute), However I know that the DDB > has to be worn 23 hours a day but it seems impossible. > What I have noted is that, with time, the foot tends > to slip from the shoe (sometimes the left, sometimes > the right) and I re-adjust it. It is strange because > the shoe is very tightened and I use two pairs of > cotton socks. I checked with Markell measurement sheet > if the size is correct and it seems so (the size is > M00), so it remains to check if the bar is the same > length of the shoulders. How do I measure it? Should I > consider the distance between heels and compare it > with shoulders? Should the bar length be something > more? > I really can't think about other causes, maybe could > be also that the correction has been lost? Consider > that a week has passed between the 3-week cast removal > and the installation of the brace (the feet were > blistered). > We talk to the doctor and he told us to change the > shoes however, you should know that Ponseti method in > Italy is virtually unknown: there is a doctor in Rome > who studied with Ponseti (but I am in Milan) and > another who is applying the method in my city but with > a relatively little experience. Obviously, we are > fully aware of Ponseti procedure and we discussed a > lot of issues with the doctor but he is following many > patients and I believe he can't dedicate the correct > amount of time to everybody. I know that Dr. Ponseti > replies to emails promptly, here, the italian doctors > do not return calls... > Anyway, 99% of italian babies with clubfoot is treated > with surgery, therefore I am lucky but still > experiencing problems with DDB with the result of > making another cast as correction is not good as it > should be. > One last thing: do you suggest to switch to > Ponseti/ AFO which seems to be better (I read > some positive comments in some email today)? > > Do you have any tips about avoiding feet slipping that > I can discuss with doctors? > Thanks > e > > > > ___________________________________________________________ > To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. http://uk.security.yahoo.com > Quote Link to comment Share on other sites More sharing options...
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