Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 Perhaps someone who sees Ponseti regularly can mention this to him at their next appointment! Daiga > Thought I'd pass along an interesting piece of info. > Lily had a foot check last week. She's been in a > FAB 23/7 for 7 weeks now. Her doc (Schwend in > Albuquerque, who's on Ponseti's list), said that > after another 6 weeks, she could drop down to nights > only (haven't we heard that one before!!). > > So I told him that we would be following Ponseti's > stricter protocol (20 hours for a month, then 16-18 > till walking, etc.). He said that he was unaware > of this recommendation - that Ponseti wasn't communicating > it to the docs. Guess this makes sense given the > fact that there are so many docs recommending the kids > drop straight down to nights only. I just assumed there > was some established communication channel between Iowa > & the rest of the docs (especially those on the list). > If they don't keep in touch through email or the like, > don't they meet at conferences occasionally? > > Kim > Tessa, 7/17/2002 > Lily, 3/28/2005, lcf, P/M FAB 23/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 Hi Kim, Good for you telling your doctor that you're going to continue with FAB wear during day naps too. The information is available to doctors. I have attached an extract from the Global Help booklet V2, endorsed by Dr Ponseti and with a foreword by him. I'm pretty sure that it's also mentioned in Dr Ponseti's book, although I last read it over a year ago. I'll have a look tonight and send the quote if I find it. This extract also addresses the previous question of the doctor who said he doesn't believe that it's necessary to 'over-correct' the foot like Dr Ponseti does. GLOBAL HELP EXTRACT: " Bracing protocol The brace is applied immediately after the last cast is removed, 3 weeks after tenotomy. The brace consists of open toe high-top straight last shoes attached to a bar [A]. For unilateral cases, the brace is set at 60 to 70 degrees of external rotation on the clubfoot side and 30 to 40 degrees of external rotation on the normal side . In bilateral cases, it is set at 70 degrees of external rotation on each side. The bar should be of sufficient length so that the heels of the shoes are at shoulder width. A common error is to prescribe too short a bar, which the child finds uncomfortable [C]. A narrow brace is a common reason for a lack of compliance. The bar should be bent 5 to 10 degrees with the convexity away from the child, to hold the feet in dorsiflexion [D]. The brace should be worn full time (day and night) for the first 3 months after the last cast is removed. After that, the child should wear the brace for 12 hours at night and 2 to 4 hours in the middle of the day for a total of 14 to16 hours during each 24-hour period. This protocol continues until the child is 3 to 4 years of age. Types of braces Several types of commercially made braces are available. With some designs, the bar is permanently attached to the bottoms of the shoes. With other designs, it is removable. With some designs, the bar length is adjustable, and with others, it is fixed. Most braces cost approximately US $100. In Uganda, Steenbeek designed a brace, which is made at a cost of approximately US $12 (see p. 24). Parents should be given a prescription for a brace at the time of the tenotomy. This gives them 3 weeks to organize themselves. In the United States, the Markell shoe and brace is most commonly used, but other countries have different options [E]. To prevent sores and blisters caused by poorly fitting shoes, makes a shoe with a soft plastic sole molded to the babies foot. Three soft leather straps hold the foot firmly against the plastic sole. Rationale for bracing At the end of casting, the foot is abducted [A] to an exaggerated amount, which should measure 60 to 70 degrees (thigh-foot axis). After the tenotomy, the final cast is left in place for 3 weeks. Ponseti's protocol then calls for a brace to maintain the foot in abduction and dorsiflexion. This is a bar attached to straight last open toe shoes. This degree of foot abduction is required to maintain the abduction of the calcaneus and forefoot and prevent relapse. The foot will gradually turn back inward, to a point typically of 10 degrees of external rotation. The medial soft tissues remain stretched out only if the brace is used after the casting. In the brace, the knees are left free, so the child can kick them " straight " to stretch the gastrosoleus tendon. The abduction of the feet in the brace, combined with the slight bend (convexity away from the child), causes the feet to dorsiflex. This helps maintain the stretch on the gastrocnemius muscle and Achilles tendon [D]. END OF EXTRACT Moss STEPS CHARITY www.steps.org.za bracing protocol Thought I'd pass along an interesting piece of info. Lily had a foot check last week. She's been in a FAB 23/7 for 7 weeks now. Her doc (Schwend in Albuquerque, who's on Ponseti's list), said that after another 6 weeks, she could drop down to nights only (haven't we heard that one before!!). So I told him that we would be following Ponseti's stricter protocol (20 hours for a month, then 16-18 till walking, etc.). He said that he was unaware of this recommendation - that Ponseti wasn't communicating it to the docs. Guess this makes sense given the fact that there are so many docs recommending the kids drop straight down to nights only. I just assumed there was some established communication channel between Iowa & the rest of the docs (especially those on the list). If they don't keep in touch through email or the like, don't they meet at conferences occasionally? Kim Tessa, 7/17/2002 Lily, 3/28/2005, lcf, P/M FAB 23/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 I know Schwend is aware of this booklet because he showed it to my husband & myself. But the bracing protocol in this book does basically say nights & naptime straight from the 23/7. It doesn't say 20 hours for a month & then down to 16-18, before going to 14 when they are walking. So it's not completely consistent with the Ponseti protocol as outlined in the email we've all passed around lately. Kim > Hi Kim, > > Good for you telling your doctor that you're going to continue with FAB wear > during day naps too. > > The information is available to doctors. I have attached an extract from > the Global Help booklet V2, endorsed by Dr Ponseti and with a foreword by > him. I'm pretty sure that it's also mentioned in Dr Ponseti's book, > although I last read it over a year ago. I'll have a look tonight and send > the quote if I find it. > > This extract also addresses the previous question of the doctor who said he > doesn't believe that it's necessary to 'over-correct' the foot like Dr > Ponseti does. > > GLOBAL HELP EXTRACT: > > " Bracing protocol > The brace is applied immediately after the last cast is removed, 3 weeks > after tenotomy. The brace consists of open toe high-top straight last shoes > attached to a bar [A]. For unilateral cases, the brace is set at 60 to 70 > degrees of external rotation on the clubfoot side and 30 to 40 degrees of > external rotation on the normal side . In bilateral cases, it is set at > 70 degrees of external rotation on each side. The bar should be of > sufficient length so that the heels of the shoes are at shoulder width. A > common error is to prescribe too short a bar, which the child finds > uncomfortable [C]. A narrow brace is a common reason for a lack of > compliance. The bar should be bent 5 to 10 degrees with the convexity away > from the child, to hold the feet in dorsiflexion [D]. > > The brace should be worn full time (day and night) for the first 3 months > after the last cast is removed. After that, the child should wear the brace > for 12 hours at night and 2 to 4 hours in the middle of the day for a total > of 14 to16 hours during each 24-hour period. This protocol continues until > the child is 3 to 4 years of age. > > Types of braces > Several types of commercially made braces are available. With some designs, > the bar is permanently attached to the bottoms of the shoes. With other > designs, it is removable. With some designs, the bar length is adjustable, > and with others, it is fixed. Most braces cost approximately US $100. In > Uganda, Steenbeek designed a brace, which is made at a cost of approximately > US $12 (see p. 24). > Parents should be given a prescription for a brace at the time of the > tenotomy. This gives them 3 weeks to organize themselves. In the United > States, the Markell shoe and brace is most commonly used, but other > countries have different options [E]. To prevent sores and blisters caused > by poorly fitting shoes, makes a shoe with a soft plastic sole > molded to the babies foot. Three soft leather straps hold the foot firmly > against the plastic sole. > > Rationale for bracing > At the end of casting, the foot is abducted [A] to an exaggerated amount, > which should measure 60 to 70 degrees (thigh-foot axis). After the tenotomy, > the final cast is left in place for 3 weeks. Ponseti's protocol then calls > for a brace to maintain the foot in abduction and dorsiflexion. This is a > bar attached to straight last open toe shoes. This degree of foot abduction > is required to maintain the abduction of the calcaneus and forefoot and > prevent relapse. The foot will gradually turn back inward, to a point > typically of 10 degrees of external rotation. > > The medial soft tissues remain stretched out only if the brace is used after > the casting. In the brace, the knees are left free, so the child can kick > them " straight " to stretch the gastrosoleus tendon. The abduction of the > feet in the brace, combined with the slight bend (convexity away from the > child), causes the feet to dorsiflex. This helps maintain the stretch on the > gastrocnemius muscle and Achilles tendon [D]. > > END OF EXTRACT > > Moss > STEPS CHARITY > www.steps.org.za > > bracing protocol > > Thought I'd pass along an interesting piece of info. > Lily had a foot check last week. She's been in a > FAB 23/7 for 7 weeks now. Her doc (Schwend in > Albuquerque, who's on Ponseti's list), said that > after another 6 weeks, she could drop down to nights > only (haven't we heard that one before!!). > > So I told him that we would be following Ponseti's > stricter protocol (20 hours for a month, then 16-18 > till walking, etc.). He said that he was unaware > of this recommendation - that Ponseti wasn't communicating > it to the docs. Guess this makes sense given the > fact that there are so many docs recommending the kids > drop straight down to nights only. I just assumed there > was some established communication channel between Iowa > & the rest of the docs (especially those on the list). > If they don't keep in touch through email or the like, > don't they meet at conferences occasionally? > > Kim > Tessa, 7/17/2002 > Lily, 3/28/2005, lcf, P/M FAB 23/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 That's true, but the Global Help booklet doesn't say night time wear only either - as some doctors have advised patients to do straight out of 23 hour wear. It says the protocol is night time wear of approx 12 hours night and a further 2-4 hours during day naps. Incidentally, was treated by Dr Ponseti in April 2003 and he never put him on 20 hours after 23 hours (as per the protocol that has been circulated recently). We went straight from 23 hours to night and day naps, he told us at first to try for an average of 16-18 hours. I don't know if it was because was older, he only started his treatment with Dr Ponseti at 10 weeks. A couple of months later - as naturally needed less sleep during the day - it reduced again to 14-16 hours (in our case 11.5 hours at night and about a 1.5 - 2 hour nap). This we did for a long time until Dr Ponseti told us to do night only because 's feet were still too over-corrected at the age of 1. South African Ponseti-trained doctors who are sticking to the method as trained by Dr Ponseti/Herzenberg are also using the protocol of night and day nap timing of approximately 16 hours. There haven't been any cases of difficulties or relapses over the past 2 years. I wonder if in the case of atypical clubfoot that they need to be kept on for more time? relapses in the last 2 years of treatment. I agree that it can get confusing, and I can't use our experience as a guideline beause every child is different. The Global Help book was compiled by so many doctors and endorsed by Dr Ponseti, so perhaps it can be taken as an 'average' treatment protocol? Just my thoughts on this... and www.clubfoot.co.za Moss STEPS CHARITY www.steps.org.za bracing protocol > > Thought I'd pass along an interesting piece of info. > Lily had a foot check last week. She's been in a > FAB 23/7 for 7 weeks now. Her doc (Schwend in > Albuquerque, who's on Ponseti's list), said that > after another 6 weeks, she could drop down to nights > only (haven't we heard that one before!!). > > So I told him that we would be following Ponseti's > stricter protocol (20 hours for a month, then 16-18 > till walking, etc.). He said that he was unaware > of this recommendation - that Ponseti wasn't communicating > it to the docs. Guess this makes sense given the > fact that there are so many docs recommending the kids > drop straight down to nights only. I just assumed there > was some established communication channel between Iowa > & the rest of the docs (especially those on the list). > If they don't keep in touch through email or the like, > don't they meet at conferences occasionally? > > Kim > Tessa, 7/17/2002 > Lily, 3/28/2005, lcf, P/M FAB 23/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 Thanks very much for sharing the details of your direct experience with Ponseti. I think every piece of info helps as we try to decide what's best for our kids!!!! Kim > That's true, but the Global Help booklet doesn't say night time wear only > either - as some doctors have advised patients to do straight out of 23 hour > wear. It says the protocol is night time wear of approx 12 hours night and > a further 2-4 hours during day naps. > > Incidentally, was treated by Dr Ponseti in April 2003 and he never put > him on 20 hours after 23 hours (as per the protocol that has been circulated > recently). We went straight from 23 hours to night and day naps, he told us > at first to try for an average of 16-18 hours. I don't know if it was > because was older, he only started his treatment with Dr Ponseti at 10 > weeks. > > A couple of months later - as naturally needed less sleep during the > day - it reduced again to 14-16 hours (in our case 11.5 hours at night and > about a 1.5 - 2 hour nap). This we did for a long time until Dr Ponseti > told us to do night only because 's feet were still too over- corrected > at the age of 1. South African Ponseti-trained doctors who are sticking to > the method as trained by Dr Ponseti/Herzenberg are also using the protocol > of night and day nap timing of approximately 16 hours. There haven't been > any cases of difficulties or relapses over the past 2 years. > > I wonder if in the case of atypical clubfoot that they need to be kept on > for more time? relapses in the last 2 years of treatment. > > I agree that it can get confusing, and I can't use our experience as a > guideline beause every child is different. The Global Help book was > compiled by so many doctors and endorsed by Dr Ponseti, so perhaps it can be > taken as an 'average' treatment protocol? > > Just my thoughts on this... > and > www.clubfoot.co.za > > > > Moss > STEPS CHARITY > www.steps.org.za > > bracing protocol > > > > Thought I'd pass along an interesting piece of info. > > Lily had a foot check last week. She's been in a > > FAB 23/7 for 7 weeks now. Her doc (Schwend in > > Albuquerque, who's on Ponseti's list), said that > > after another 6 weeks, she could drop down to nights > > only (haven't we heard that one before!!). > > > > So I told him that we would be following Ponseti's > > stricter protocol (20 hours for a month, then 16-18 > > till walking, etc.). He said that he was unaware > > of this recommendation - that Ponseti wasn't communicating > > it to the docs. Guess this makes sense given the > > fact that there are so many docs recommending the kids > > drop straight down to nights only. I just assumed there > > was some established communication channel between Iowa > > & the rest of the docs (especially those on the list). > > If they don't keep in touch through email or the like, > > don't they meet at conferences occasionally? > > > > Kim > > Tessa, 7/17/2002 > > Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 Very true!! Moss STEPS CHARITY www.steps.org.za Re: bracing protocol Thanks very much for sharing the details of your direct experience with Ponseti. I think every piece of info helps as we try to decide what's best for our kids!!!! Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 Very true!! Moss STEPS CHARITY www.steps.org.za Re: bracing protocol Thanks very much for sharing the details of your direct experience with Ponseti. I think every piece of info helps as we try to decide what's best for our kids!!!! Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 I also meant to say in my last post that the experience of the docs in South Africa is an interesting data point as well. Seems like the 16 hour av. is working for their patients. I guess with the relapse stories I've heard from folks in this yahoo group & my already cautious nature, I'll probably stick with the somewhat stricter protocol Ponseti outlined in his email. I suppose all of this will become more clear as the Ponseti docs work on & publish their statistics (protocol & relapse rates, etc.). I know Dr. Schwend has a grad student working on the Univ. of NM docs' stats this summer. Thanks again for your added insight, ! Kim > That's true, but the Global Help booklet doesn't say night time wear only > either - as some doctors have advised patients to do straight out of 23 hour > wear. It says the protocol is night time wear of approx 12 hours night and > a further 2-4 hours during day naps. > > Incidentally, was treated by Dr Ponseti in April 2003 and he never put > him on 20 hours after 23 hours (as per the protocol that has been circulated > recently). We went straight from 23 hours to night and day naps, he told us > at first to try for an average of 16-18 hours. I don't know if it was > because was older, he only started his treatment with Dr Ponseti at 10 > weeks. > > A couple of months later - as naturally needed less sleep during the > day - it reduced again to 14-16 hours (in our case 11.5 hours at night and > about a 1.5 - 2 hour nap). This we did for a long time until Dr Ponseti > told us to do night only because 's feet were still too over- corrected > at the age of 1. South African Ponseti-trained doctors who are sticking to > the method as trained by Dr Ponseti/Herzenberg are also using the protocol > of night and day nap timing of approximately 16 hours. There haven't been > any cases of difficulties or relapses over the past 2 years. > > I wonder if in the case of atypical clubfoot that they need to be kept on > for more time? relapses in the last 2 years of treatment. > > I agree that it can get confusing, and I can't use our experience as a > guideline beause every child is different. The Global Help book was > compiled by so many doctors and endorsed by Dr Ponseti, so perhaps it can be > taken as an 'average' treatment protocol? > > Just my thoughts on this... > and > www.clubfoot.co.za > > > > Moss > STEPS CHARITY > www.steps.org.za > > bracing protocol > > > > Thought I'd pass along an interesting piece of info. > > Lily had a foot check last week. She's been in a > > FAB 23/7 for 7 weeks now. Her doc (Schwend in > > Albuquerque, who's on Ponseti's list), said that > > after another 6 weeks, she could drop down to nights > > only (haven't we heard that one before!!). > > > > So I told him that we would be following Ponseti's > > stricter protocol (20 hours for a month, then 16-18 > > till walking, etc.). He said that he was unaware > > of this recommendation - that Ponseti wasn't communicating > > it to the docs. Guess this makes sense given the > > fact that there are so many docs recommending the kids > > drop straight down to nights only. I just assumed there > > was some established communication channel between Iowa > > & the rest of the docs (especially those on the list). > > If they don't keep in touch through email or the like, > > don't they meet at conferences occasionally? > > > > Kim > > Tessa, 7/17/2002 > > Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 I also meant to say in my last post that the experience of the docs in South Africa is an interesting data point as well. Seems like the 16 hour av. is working for their patients. I guess with the relapse stories I've heard from folks in this yahoo group & my already cautious nature, I'll probably stick with the somewhat stricter protocol Ponseti outlined in his email. I suppose all of this will become more clear as the Ponseti docs work on & publish their statistics (protocol & relapse rates, etc.). I know Dr. Schwend has a grad student working on the Univ. of NM docs' stats this summer. Thanks again for your added insight, ! Kim > That's true, but the Global Help booklet doesn't say night time wear only > either - as some doctors have advised patients to do straight out of 23 hour > wear. It says the protocol is night time wear of approx 12 hours night and > a further 2-4 hours during day naps. > > Incidentally, was treated by Dr Ponseti in April 2003 and he never put > him on 20 hours after 23 hours (as per the protocol that has been circulated > recently). We went straight from 23 hours to night and day naps, he told us > at first to try for an average of 16-18 hours. I don't know if it was > because was older, he only started his treatment with Dr Ponseti at 10 > weeks. > > A couple of months later - as naturally needed less sleep during the > day - it reduced again to 14-16 hours (in our case 11.5 hours at night and > about a 1.5 - 2 hour nap). This we did for a long time until Dr Ponseti > told us to do night only because 's feet were still too over- corrected > at the age of 1. South African Ponseti-trained doctors who are sticking to > the method as trained by Dr Ponseti/Herzenberg are also using the protocol > of night and day nap timing of approximately 16 hours. There haven't been > any cases of difficulties or relapses over the past 2 years. > > I wonder if in the case of atypical clubfoot that they need to be kept on > for more time? relapses in the last 2 years of treatment. > > I agree that it can get confusing, and I can't use our experience as a > guideline beause every child is different. The Global Help book was > compiled by so many doctors and endorsed by Dr Ponseti, so perhaps it can be > taken as an 'average' treatment protocol? > > Just my thoughts on this... > and > www.clubfoot.co.za > > > > Moss > STEPS CHARITY > www.steps.org.za > > bracing protocol > > > > Thought I'd pass along an interesting piece of info. > > Lily had a foot check last week. She's been in a > > FAB 23/7 for 7 weeks now. Her doc (Schwend in > > Albuquerque, who's on Ponseti's list), said that > > after another 6 weeks, she could drop down to nights > > only (haven't we heard that one before!!). > > > > So I told him that we would be following Ponseti's > > stricter protocol (20 hours for a month, then 16-18 > > till walking, etc.). He said that he was unaware > > of this recommendation - that Ponseti wasn't communicating > > it to the docs. Guess this makes sense given the > > fact that there are so many docs recommending the kids > > drop straight down to nights only. I just assumed there > > was some established communication channel between Iowa > > & the rest of the docs (especially those on the list). > > If they don't keep in touch through email or the like, > > don't they meet at conferences occasionally? > > > > Kim > > Tessa, 7/17/2002 > > Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 Kim, That is an interesting concept... however I don't believe it. I simply can't imagine that any single doc who has trained with Dr. P. came away from it having been told 23/7 for 3mo and then nights only. Unless they're hard of hearing, or perhaps selective hearing? I SERIOUSLY doubt Dr. Ponseti has ever said such a thing to *anyone*, especially Dr's there to train with him. Just doesn't make sense. More open lines of communication would be great for *new* discoveries, of course (and I do think the docs need to have a better route of information for this as it's absolutely a problem... at least with our doc)... but don't tell me they don't know about the proper bracing protocol. (not directed at you, just in general *don't tell me*). If they're not getting the information in the first place either Dr. Ponseti is failing miserably in his training or these docs are hearing *what they want to hear* and not what he's teaching. I'm defaulting to trusting that Dr. P. IS telling them the correct protocol and again... they are coming away from it under some kind of impression that it's too strict and parents won't do it. Just my opinion but I'm pretty confident in Dr. Ponseti. Additionally, I noticed you had written 16-18 till walking and that might be a typo or incomplete thought but I wanted to point out that you should feel comfortable at 14-16 till walking. :-) Kori At 08:29 AM 7/12/2005, you wrote: >Thought I'd pass along an interesting piece of info. >Lily had a foot check last week. She's been in a >FAB 23/7 for 7 weeks now. Her doc (Schwend in >Albuquerque, who's on Ponseti's list), said that >after another 6 weeks, she could drop down to nights >only (haven't we heard that one before!!). > >So I told him that we would be following Ponseti's >stricter protocol (20 hours for a month, then 16-18 >till walking, etc.). He said that he was unaware >of this recommendation - that Ponseti wasn't communicating >it to the docs. Guess this makes sense given the >fact that there are so many docs recommending the kids >drop straight down to nights only. I just assumed there >was some established communication channel between Iowa > & the rest of the docs (especially those on the list). >If they don't keep in touch through email or the like, >don't they meet at conferences occasionally? > >Kim >Tessa, 7/17/2002 >Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 Kim, That is an interesting concept... however I don't believe it. I simply can't imagine that any single doc who has trained with Dr. P. came away from it having been told 23/7 for 3mo and then nights only. Unless they're hard of hearing, or perhaps selective hearing? I SERIOUSLY doubt Dr. Ponseti has ever said such a thing to *anyone*, especially Dr's there to train with him. Just doesn't make sense. More open lines of communication would be great for *new* discoveries, of course (and I do think the docs need to have a better route of information for this as it's absolutely a problem... at least with our doc)... but don't tell me they don't know about the proper bracing protocol. (not directed at you, just in general *don't tell me*). If they're not getting the information in the first place either Dr. Ponseti is failing miserably in his training or these docs are hearing *what they want to hear* and not what he's teaching. I'm defaulting to trusting that Dr. P. IS telling them the correct protocol and again... they are coming away from it under some kind of impression that it's too strict and parents won't do it. Just my opinion but I'm pretty confident in Dr. Ponseti. Additionally, I noticed you had written 16-18 till walking and that might be a typo or incomplete thought but I wanted to point out that you should feel comfortable at 14-16 till walking. :-) Kori At 08:29 AM 7/12/2005, you wrote: >Thought I'd pass along an interesting piece of info. >Lily had a foot check last week. She's been in a >FAB 23/7 for 7 weeks now. Her doc (Schwend in >Albuquerque, who's on Ponseti's list), said that >after another 6 weeks, she could drop down to nights >only (haven't we heard that one before!!). > >So I told him that we would be following Ponseti's >stricter protocol (20 hours for a month, then 16-18 >till walking, etc.). He said that he was unaware >of this recommendation - that Ponseti wasn't communicating >it to the docs. Guess this makes sense given the >fact that there are so many docs recommending the kids >drop straight down to nights only. I just assumed there >was some established communication channel between Iowa > & the rest of the docs (especially those on the list). >If they don't keep in touch through email or the like, >don't they meet at conferences occasionally? > >Kim >Tessa, 7/17/2002 >Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Kori, It's just hard for me to pinpoint where all this confusion comes in regarding the bracing protocol if it has been clearly communicated to the Docs. (Unless you're right in that the docs are afraid to insist on the longer times with parents.) And Schwend did say that Ponseti had told him just nights & naps directly after full time wear. That is what the Global Health booklet says too (see excerpt sent around yesterday). So maybe Ponseti has changed the protocol to make it more conservative during the past couple of years? He's certainly made the recommendations for release from the brace more conservative than they were originally. > > Additionally, I noticed you had written 16-18 till walking and that > might be a typo or incomplete thought but I wanted to point out that > you should feel comfortable at 14-16 till walking. :-) The email from Ponseti says: " We try to have the babies wear the brace at night and naptime for a total of 16-18 hours and once they are walking wear it at least 14 hours. " I interpreted that as 16-18 until walking. Am I missing something? Probably likely, as each recommendation I read seems to say something just a little different and I'm a bit confused. Kim >> At 08:29 AM 7/12/2005, you wrote: > >Thought I'd pass along an interesting piece of info. > >Lily had a foot check last week. She's been in a > >FAB 23/7 for 7 weeks now. Her doc (Schwend in > >Albuquerque, who's on Ponseti's list), said that > >after another 6 weeks, she could drop down to nights > >only (haven't we heard that one before!!). > > > >So I told him that we would be following Ponseti's > >stricter protocol (20 hours for a month, then 16-18 > >till walking, etc.). He said that he was unaware > >of this recommendation - that Ponseti wasn't communicating > >it to the docs. Guess this makes sense given the > >fact that there are so many docs recommending the kids > >drop straight down to nights only. I just assumed there > >was some established communication channel between Iowa > > & the rest of the docs (especially those on the list). > >If they don't keep in touch through email or the like, > >don't they meet at conferences occasionally? > > > >Kim > >Tessa, 7/17/2002 > >Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2005 Report Share Posted July 15, 2005 KIm, My ortho told me that my son would have to wear his DBB 23/7 for 3-4 years!!! He claims to know Ponsetti but obviously not. Diego has been in the shoes since 7/1 and sometimes I have to admit not all 23 hours. It has been so hard for him to adjust but I know that if I do not comply with the method that it will be more difficult for him later on. He has not slept a full-night or napped since he has had the shoes on. Sometimes after a bath he falls asleep and I do not get the shoes on before the hour is up so I let him sleep and he is out of the shoes for 3 hours sometimes more. Any tips would help on how to get him to sleep. We co-sleep (or should I say we no-sleep! HA! HA!) I will be seeing our Dr. on the 25th and I want to drive to Tucson to see a Dr. Kent who has been trained at Ponseti's clinic. I would like to also try to see Dr. Ponseti if possible down the road. Thanks for letting me express myself I am so thankful to have found this support group! Phx,AZ Mom to Diego 3/25/05 BC on DBB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2005 Report Share Posted July 15, 2005 Hi, Kori, > > > > > Additionally, I noticed you had written 16-18 till walking and > that > > might be a typo or incomplete thought but I wanted to point out > that > > you should feel comfortable at 14-16 till walking. :-) > > The email from Ponseti says: > > " We try to have the babies wear the > brace at night and naptime for a total of 16-18 hours and once they > are walking wear it at least 14 hours. " > > I interpreted that as 16-18 until walking. Am I missing > something? Probably likely, as each recommendation I > read seems to say something just a little different and > I'm a bit confused. I'd really like to know what you think about the 14-16 vs 16-18 until walking. Did I misinterpret Ponseti's email? Thanks so much!! Kim Tessa, 7/17/2002 Lily, 3/28/2005, lcf, P/M FAB 23/7 > > Kim > > > >> At 08:29 AM 7/12/2005, you wrote: > > >Thought I'd pass along an interesting piece of info. > > >Lily had a foot check last week. She's been in a > > >FAB 23/7 for 7 weeks now. Her doc (Schwend in > > >Albuquerque, who's on Ponseti's list), said that > > >after another 6 weeks, she could drop down to nights > > >only (haven't we heard that one before!!). > > > > > >So I told him that we would be following Ponseti's > > >stricter protocol (20 hours for a month, then 16-18 > > >till walking, etc.). He said that he was unaware > > >of this recommendation - that Ponseti wasn't communicating > > >it to the docs. Guess this makes sense given the > > >fact that there are so many docs recommending the kids > > >drop straight down to nights only. I just assumed there > > >was some established communication channel between Iowa > > > & the rest of the docs (especially those on the list). > > >If they don't keep in touch through email or the like, > > >don't they meet at conferences occasionally? > > > > > >Kim > > >Tessa, 7/17/2002 > > >Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2005 Report Share Posted July 15, 2005 Kim, I have seen him quoted both ways here actually. I would have to default to asking him directly and explaining why we're confused. For the most part, the standard has been 12 hours once you're down to nights and naps but then I saw a quote from Dr. P. stating 12-14 till release. Which would mean to me that the previous phase would be 16-18hr/d. In this quote he's saying at least 14hr/d (which would mean that I am again not bracing Darbi quite enough because sometimes she only gets 12hr and I consider 13hr good enough much of the time if she really wants them off). I think he should clarify for us so we know we're telling people the right thing. Anyone want to explain the confusion to him and ask for an official clarification on bracing protocol? If we ask for an official quote from him to use universally in our support list here maybe it'll be the final word on the subject? Perhaps even the docs would read and hear it? Kori At 06:29 PM 7/15/2005, you wrote: >Hi, Kori, > > > > > > > > > Additionally, I noticed you had written 16-18 till walking and > > that > > > might be a typo or incomplete thought but I wanted to point out > > that > > > you should feel comfortable at 14-16 till walking. :-) > > > > The email from Ponseti says: > > > > " We try to have the babies wear the > > brace at night and naptime for a total of 16-18 hours and once >they > > are walking wear it at least 14 hours. " > > > > I interpreted that as 16-18 until walking. Am I missing > > something? Probably likely, as each recommendation I > > read seems to say something just a little different and > > I'm a bit confused. > >I'd really like to know what you think about the 14-16 vs >16-18 until walking. Did I misinterpret Ponseti's email? > >Thanks so much!! > >Kim >Tessa, 7/17/2002 >Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > > Kim > > > > > > >> At 08:29 AM 7/12/2005, you wrote: > > > >Thought I'd pass along an interesting piece of info. > > > >Lily had a foot check last week. She's been in a > > > >FAB 23/7 for 7 weeks now. Her doc (Schwend in > > > >Albuquerque, who's on Ponseti's list), said that > > > >after another 6 weeks, she could drop down to nights > > > >only (haven't we heard that one before!!). > > > > > > > >So I told him that we would be following Ponseti's > > > >stricter protocol (20 hours for a month, then 16-18 > > > >till walking, etc.). He said that he was unaware > > > >of this recommendation - that Ponseti wasn't communicating > > > >it to the docs. Guess this makes sense given the > > > >fact that there are so many docs recommending the kids > > > >drop straight down to nights only. I just assumed there > > > >was some established communication channel between Iowa > > > > & the rest of the docs (especially those on the list). > > > >If they don't keep in touch through email or the like, > > > >don't they meet at conferences occasionally? > > > > > > > >Kim > > > >Tessa, 7/17/2002 > > > >Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2005 Report Share Posted July 16, 2005 I thought we were using an email message Dr Ponseti sent a group member as the official word. That's message #30939: " After 3 months of full time brace wear, we usually gradually wean the babies out of the brace, starting with 4 hours a day out for one month, then 8 hours a day out. We try to have the babies wear the brace at night and naptime for a total of 16-18 hours and once they are walking wear it at least 14 hours. We used to recommend bracing continue to age 3, but since we have seen some relapses, we now recommend 3 1/2 to 4 years of age. I.V. Ponseti, M.D. " Also, from the Global-HELP booklet, page 5: Relapses are rare with the continued use of the foot abduction brace for 14 to 16 hours a day (when the baby sleeps) until 3 to 4 years of age. And page 16: The brace should be worn full time (day and night) for the first 3 months after the last cast is removed. After that, the child should wear the brace for 12 hours at night and 2 to 4 hours in the middle of the day for a total of 14 to 16 hours during each 24-hour period. This protocol continues until the child is 3 to 4 years of age. So, those concur with Dr Ponseti's note, save for the initial reduction to 20 hours for a month. And why does he have that 16-18 hours a day right after he says the baby can go to " 8 hours a day out " (ie, 16 hours a day " in " )? Sigh. We're doing 14/7 now, but I don't know that Jonah's going to keep taking a 2-hour nap until he is 4. And it seems that many--if not most--doctors are reducing straight from 23/7 to " nights only " . That can't be more than 12 hours a day for most babies, 10 for some of the older kids. Hard to tell, too, just how much this all matters even when it's clear that it DOES matter. Drs Morcuende, Ponseti et al, define non-compliance in a paper in _Pediatrics_ as not using the brace at least 10 hours a day. They do not make a distinction about which stage of the brace-wear they are talking about, though.(Meanwhile, Dr Dobbs elsewhere defines noncompliance as abandonning the brace altogether.) Hmmmm. I'm tired. Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, corrected bilateral clubfoot, FAB 14/7) frogabog wrote: Kim, I have seen him quoted both ways here actually. I would have to default to asking him directly and explaining why we're confused. For the most part, the standard has been 12 hours once you're down to nights and naps but then I saw a quote from Dr. P. stating 12-14 till release. Which would mean to me that the previous phase would be 16-18hr/d. In this quote he's saying at least 14hr/d (which would mean that I am again not bracing Darbi quite enough because sometimes she only gets 12hr and I consider 13hr good enough much of the time if she really wants them off). I think he should clarify for us so we know we're telling people the right thing. Anyone want to explain the confusion to him and ask for an official clarification on bracing protocol? If we ask for an official quote from him to use universally in our support list here maybe it'll be the final word on the subject? Perhaps even the docs would read and hear it? Kori At 06:29 PM 7/15/2005, you wrote: >Hi, Kori, > > > > > > > > > Additionally, I noticed you had written 16-18 till walking and > > that > > > might be a typo or incomplete thought but I wanted to point out > > that > > > you should feel comfortable at 14-16 till walking. :-) > > > > The email from Ponseti says: > > > > " We try to have the babies wear the > > brace at night and naptime for a total of 16-18 hours and once >they > > are walking wear it at least 14 hours. " > > > > I interpreted that as 16-18 until walking. Am I missing > > something? Probably likely, as each recommendation I > > read seems to say something just a little different and > > I'm a bit confused. > >I'd really like to know what you think about the 14-16 vs >16-18 until walking. Did I misinterpret Ponseti's email? > >Thanks so much!! > >Kim >Tessa, 7/17/2002 >Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > > Kim > > > > > > >> At 08:29 AM 7/12/2005, you wrote: > > > >Thought I'd pass along an interesting piece of info. > > > >Lily had a foot check last week. She's been in a > > > >FAB 23/7 for 7 weeks now. Her doc (Schwend in > > > >Albuquerque, who's on Ponseti's list), said that > > > >after another 6 weeks, she could drop down to nights > > > >only (haven't we heard that one before!!). > > > > > > > >So I told him that we would be following Ponseti's > > > >stricter protocol (20 hours for a month, then 16-18 > > > >till walking, etc.). He said that he was unaware > > > >of this recommendation - that Ponseti wasn't communicating > > > >it to the docs. Guess this makes sense given the > > > >fact that there are so many docs recommending the kids > > > >drop straight down to nights only. I just assumed there > > > >was some established communication channel between Iowa > > > > & the rest of the docs (especially those on the list). > > > >If they don't keep in touch through email or the like, > > > >don't they meet at conferences occasionally? > > > > > > > >Kim > > > >Tessa, 7/17/2002 > > > >Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 I'm so far behind in my answers/comments that everyone is probably done talking about this, but I just wanted to mention what I talked about with Dr. Dobbs when we had this whole discussion a few months ago about docs cutting people's hours back too quickly or too soon -- Dr. Dobbs always felt he was being clear in telling people the protocol he wants followed, 23/7 for 3 months, then 16-18, then 14, then 12, etc. but he was clearly being misunderstood by some parents. I don't know if it is selective hearing or just that sometimes there is an assumption that someone understands what you mean. Like I mentioned to him, that the booklet he gives to his patients discusses the 23/7 and then says they will be reduced to nights and naps, but it never actually discusses the *gradual* reduction and how many hours " nights & naps " means. > >Thought I'd pass along an interesting piece of info. > >Lily had a foot check last week. She's been in a > >FAB 23/7 for 7 weeks now. Her doc (Schwend in > >Albuquerque, who's on Ponseti's list), said that > >after another 6 weeks, she could drop down to nights > >only (haven't we heard that one before!!). > > > >So I told him that we would be following Ponseti's > >stricter protocol (20 hours for a month, then 16-18 > >till walking, etc.). He said that he was unaware > >of this recommendation - that Ponseti wasn't communicating > >it to the docs. Guess this makes sense given the > >fact that there are so many docs recommending the kids > >drop straight down to nights only. I just assumed there > >was some established communication channel between Iowa > > & the rest of the docs (especially those on the list). > >If they don't keep in touch through email or the like, > >don't they meet at conferences occasionally? > > > >Kim > >Tessa, 7/17/2002 > >Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 I emailled Dr. Ponseti, asking for clarification regarding the protocol. I'll post his reply. Kim > > > > >Thought I'd pass along an interesting piece of info. > > > > >Lily had a foot check last week. She's been in a > > > > >FAB 23/7 for 7 weeks now. Her doc (Schwend in > > > > >Albuquerque, who's on Ponseti's list), said that > > > > >after another 6 weeks, she could drop down to nights > > > > >only (haven't we heard that one before!!). > > > > > > > > > >So I told him that we would be following Ponseti's > > > > >stricter protocol (20 hours for a month, then 16-18 > > > > >till walking, etc.). He said that he was unaware > > > > >of this recommendation - that Ponseti wasn't communicating > > > > >it to the docs. Guess this makes sense given the > > > > >fact that there are so many docs recommending the kids > > > > >drop straight down to nights only. I just assumed there > > > > >was some established communication channel between Iowa > > > > > & the rest of the docs (especially those on the list). > > > > >If they don't keep in touch through email or the like, > > > > >don't they meet at conferences occasionally? > > > > > > > > > >Kim > > > > >Tessa, 7/17/2002 > > > > >Lily, 3/28/2005, lcf, P/M FAB 23/7 > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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