Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Has anyone heard of botox used to help lengthen the heel cord? Dr. Herzenberg mentioned it as a possible option as opposed to a second tenotomy when we spoke about Tommy's s slipping off. He said that some of colleagues were using it with good success. We didn't discuss it in detail yet but was wondering if anyone has heard of this. Tommy Lee 4/23/04 BLCF...my mommy needs the botox not me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Yes, I've heard of it before. I think that there is a doctor in British Columbia, Canada (not Dr. Pirani) who has been using it with success in place of the tenotomy. If you do a search of botox on this list, you may be able to find some archives where there was a discussion about it. Probably in the last year to year and a half. Good luck! Daiga > > Has anyone heard of botox used to help lengthen the heel cord? Dr. > Herzenberg mentioned it as a possible option as opposed to a second > tenotomy when we spoke about Tommy's s slipping off. He said > that some of colleagues were using it with good success. We didn't > discuss it in detail yet but was wondering if anyone has heard of > this. > > > Tommy Lee 4/23/04 BLCF...my mommy needs the botox not me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Found these: Botox Experiences: http://www.clubfootclub.org/Stories.htm Clubfeet Treated With Deadly Poison http://www.applesforhealth.com/clubfeet1.html This is an older artical and it says that the other option is surgery with no metntion of Ponseti or even casting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 It's Dr. Alvarez. Yes, there is info in the archives. You might also find some information by searching on google for botox & Alvarez. I think I recall some hospital in Texas using it also- maybe ish Rite? & (3-16-00) left clubfoot > > > > Has anyone heard of botox used to help lengthen the heel cord? Dr. > > Herzenberg mentioned it as a possible option as opposed to a second > > tenotomy when we spoke about Tommy's s slipping off. He > said > > that some of colleagues were using it with good success. We didn't > > discuss it in detail yet but was wondering if anyone has heard of > > this. > > > > > > Tommy Lee 4/23/04 BLCF...my mommy needs the botox not me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Yes, they use botox injections as part of treatment at Childrens Hospital in Vancouver BC (one of the reason's we sought out treatment elsewhere). It made me nervous, mind you I never ended up doing any research on it as we were lucky enough to have found the method, maybe see what Dr. P has to say about it. - & Grace > > > > Has anyone heard of botox used to help lengthen the heel cord? Dr. > > Herzenberg mentioned it as a possible option as opposed to a second > > tenotomy when we spoke about Tommy's s slipping off. He > said > > that some of colleagues were using it with good success. We didn't > > discuss it in detail yet but was wondering if anyone has heard of > > this. > > > > > > Tommy Lee 4/23/04 BLCF...my mommy needs the botox not me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 My 1st son's 1st doctor wanted to use botox. That's when I found Dr. Ponseti and switched over. On that note however, my nephew has - shoot the word escapes me - cerebial palsey? and a dr. used botox on his legs quite a bit. They said the pain of getting the shots was unreal. It's my understanding the effects are nto permanent, either - so what does your dr. propose to do when the shot wears off? s. Re: Botox? Yes, they use botox injections as part of treatment at Childrens Hospital in Vancouver BC (one of the reason's we sought out treatment elsewhere). It made me nervous, mind you I never ended up doing any research on it as we were lucky enough to have found the method, maybe see what Dr. P has to say about it. - & Grace > > > > Has anyone heard of botox used to help lengthen the heel cord? Dr. > > Herzenberg mentioned it as a possible option as opposed to a second > > tenotomy when we spoke about Tommy's s slipping off. He > said > > that some of colleagues were using it with good success. We didn't > > discuss it in detail yet but was wondering if anyone has heard of > > this. > > > > > > Tommy Lee 4/23/04 BLCF...my mommy needs the botox not me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 My 1st son's 1st doctor wanted to use botox. That's when I found Dr. Ponseti and switched over. On that note however, my nephew has - shoot the word escapes me - cerebial palsey? and a dr. used botox on his legs quite a bit. They said the pain of getting the shots was unreal. It's my understanding the effects are nto permanent, either - so what does your dr. propose to do when the shot wears off? s. Re: Botox? Yes, they use botox injections as part of treatment at Childrens Hospital in Vancouver BC (one of the reason's we sought out treatment elsewhere). It made me nervous, mind you I never ended up doing any research on it as we were lucky enough to have found the method, maybe see what Dr. P has to say about it. - & Grace > > > > Has anyone heard of botox used to help lengthen the heel cord? Dr. > > Herzenberg mentioned it as a possible option as opposed to a second > > tenotomy when we spoke about Tommy's s slipping off. He > said > > that some of colleagues were using it with good success. We didn't > > discuss it in detail yet but was wondering if anyone has heard of > > this. > > > > > > Tommy Lee 4/23/04 BLCF...my mommy needs the botox not me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 I met a woman at the hospital last month whose child had CP and they were doing botox treatments. They inject the botox in the stronger muscles to paralyse them and make the weak muscles grow stronger. She brings her daughter in every 4 months for treatment. Number23 number23@...> wrote:My 1st son's 1st doctor wanted to use botox. That's when I found Dr. Ponseti and switched over. On that note however, my nephew has - shoot the word escapes me - cerebial palsey? and a dr. used botox on his legs quite a bit. They said the pain of getting the shots was unreal. It's my understanding the effects are nto permanent, either - so what does your dr. propose to do when the shot wears off? s. Re: Botox? Yes, they use botox injections as part of treatment at Childrens Hospital in Vancouver BC (one of the reason's we sought out treatment elsewhere). It made me nervous, mind you I never ended up doing any research on it as we were lucky enough to have found the method, maybe see what Dr. P has to say about it. - & Grace > > > > Has anyone heard of botox used to help lengthen the heel cord? Dr. > > Herzenberg mentioned it as a possible option as opposed to a second > > tenotomy when we spoke about Tommy's s slipping off. He > said > > that some of colleagues were using it with good success. We didn't > > discuss it in detail yet but was wondering if anyone has heard of > > this. > > > > > > Tommy Lee 4/23/04 BLCF...my mommy needs the botox not me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 , Here is some information on Botox from prior messages from May 2003. BOTOX has been used previously with other casting methods as well as with the French method at the Dallas Scotish Rite hospital. Dallas's initial published reports on BOTOX were positive. But ultimately all of the 4 children it was used on at Dallas Scotish Rite had relapses that required the surgery and that outcome was not published. Here is the home web page from the manufacturers or marketers of BOTOX http://www.botox.com/index.jsp?cc&faq There are certain uses for which the FDA has approved the use of BOTOX. Once a drug is approved, doctors can also prescribe it for other uses. BOTOX was being used for a number of years as a temporary facial muscle relaxer, but only recently was FDA approved for that use. It appears that BOTOX has been used since the late 1990's in some orthopedic applications but at the moment I believe that those are " off-label " uses that have not yet been specifically approved by the FDA. Here are some messages from other parents and web sites relating to BOTOX and it's use in Clubfoot. There have been some parents who felt that BOTOX was helpful and some who felt that ultimately it did not work. (the old internal links to archived parentsplace messages do not work anymore) http://groups.yahoo.com/group/nosurgery4clubfoot/message/5071 http://groups.yahoo.com/group/nosurgery4clubfoot/message/5077 http://groups.yahoo.com/group/nosurgery4clubfoot/message/5116 http://groups.yahoo.com/group/nosurgery4clubfoot/message/5118 A study presented at the 1999 AAOS on the Use of BOTOX in heel cord contracture management in Cerebral Palsy, I believe in older children. " Studies to date indicate statistically significant short term success but rapid recurrence within 2 months to 12 months ... There was a 100% recurrence rate with the Botox® regime. " http://www.aaos.org/wordhtml/anmeet99/sciprog/062.htm The Texas ish Rite Hospital wrote a report on 4 children with clubfoot for whom Botox had been used to try to avoid the surgery, but have since discontinued Botox's use. I had talked to one of the authors about the study and she indicated that all four of the children that they treated with BOTOX had relapses that ultimately lead to them having posterior release types of surgery. She was still optimistic about the potential for the use of BOTOX someday and for there being other studies done on the use of BOTOX for clubfoot. http://www.applesforhealth.com/clubfeet1.html There has recently, (in 2001-2002) been a doctor in Vancouver B.C., Canada who has been using a modified version of the Ponseti method that uses Botox instead of a tenotomy. http://www.cw.bc.ca/orthopaedics/botoxres.asp She had a study published on the first year outcomes with BOTOX at the recent 2002 POSNA Convention. Her study was titled " BOTULINUM A TOXIN IN THE TREATMENT OF CLUBFEET: A PRELIMINARY REPORT OF A PILOT STUDY " C.M. Alvarez, S.J. Tredwell, R.D. Beauchamp and R. Choit* (Dept of Orthopaedics, BCCH 4480 Oak St. Vancouver, BC V6H 3V4) The study was looking at the use of BOTOX instead of tenotomy in a modified version of the Ponseti method. One of their conclusions was that " This study suggests that Botox is capable of defunctioning the gastrocnemius and is sufficient to prevent clubfoot surgery in the first year. " The study is followed by this statement - " The FDA has not cleared the drug and/or medical device for the use described in this presentation, (i.e., the drug or medical device is being discussed for an " off label " use). " The full study can be seen along with the other 2002 POSNA Clubfoot studies in the files section of the Ponseti method parents support web site at http://groups.yahoo.com/group/nosurgery4clubfoot/files/ReferenceInfor m ation4/ or I will be glad to e-mail you a copy of it. The studies that have existed for the use of BOTOX for clubfoot so far have seemed to be for use prior to a 1st surgery. My opinion is that although BOTOX may hold some promise that it is still not a long term proven established method. There are probably individual doctors that have had other experience with BOTOX that has not yet been reported. Also, I don't think that Dr. Alverez ever talked to any of the doctors at the U of Iowa about using Botox with the Ponseti method. And in the newspaper articles on Botox, the Ponseti method, which sets up the whole initial correction, is never even mentioned. But there are and probably will be children for whom BOTOX will be helpful in the treatment for clubfoot. And perhaps ultimately, there will be enough long term experience to back up the intial positive one year outcomes. Also, although there may be some who have previously talked about it, I don't remember seeing any prior experiences of the use of botox after a prior surgery. and (3-17-99) > > Has anyone heard of botox used to help lengthen the heel cord? Dr. > Herzenberg mentioned it as a possible option as opposed to a second > tenotomy when we spoke about Tommy's s slipping off. He said > that some of colleagues were using it with good success. We didn't > discuss it in detail yet but was wondering if anyone has heard of > this. > > > Tommy Lee 4/23/04 BLCF...my mommy needs the botox not me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 , Here is some information on Botox from prior messages from May 2003. BOTOX has been used previously with other casting methods as well as with the French method at the Dallas Scotish Rite hospital. Dallas's initial published reports on BOTOX were positive. But ultimately all of the 4 children it was used on at Dallas Scotish Rite had relapses that required the surgery and that outcome was not published. Here is the home web page from the manufacturers or marketers of BOTOX http://www.botox.com/index.jsp?cc&faq There are certain uses for which the FDA has approved the use of BOTOX. Once a drug is approved, doctors can also prescribe it for other uses. BOTOX was being used for a number of years as a temporary facial muscle relaxer, but only recently was FDA approved for that use. It appears that BOTOX has been used since the late 1990's in some orthopedic applications but at the moment I believe that those are " off-label " uses that have not yet been specifically approved by the FDA. Here are some messages from other parents and web sites relating to BOTOX and it's use in Clubfoot. There have been some parents who felt that BOTOX was helpful and some who felt that ultimately it did not work. (the old internal links to archived parentsplace messages do not work anymore) http://groups.yahoo.com/group/nosurgery4clubfoot/message/5071 http://groups.yahoo.com/group/nosurgery4clubfoot/message/5077 http://groups.yahoo.com/group/nosurgery4clubfoot/message/5116 http://groups.yahoo.com/group/nosurgery4clubfoot/message/5118 A study presented at the 1999 AAOS on the Use of BOTOX in heel cord contracture management in Cerebral Palsy, I believe in older children. " Studies to date indicate statistically significant short term success but rapid recurrence within 2 months to 12 months ... There was a 100% recurrence rate with the Botox® regime. " http://www.aaos.org/wordhtml/anmeet99/sciprog/062.htm The Texas ish Rite Hospital wrote a report on 4 children with clubfoot for whom Botox had been used to try to avoid the surgery, but have since discontinued Botox's use. I had talked to one of the authors about the study and she indicated that all four of the children that they treated with BOTOX had relapses that ultimately lead to them having posterior release types of surgery. She was still optimistic about the potential for the use of BOTOX someday and for there being other studies done on the use of BOTOX for clubfoot. http://www.applesforhealth.com/clubfeet1.html There has recently, (in 2001-2002) been a doctor in Vancouver B.C., Canada who has been using a modified version of the Ponseti method that uses Botox instead of a tenotomy. http://www.cw.bc.ca/orthopaedics/botoxres.asp She had a study published on the first year outcomes with BOTOX at the recent 2002 POSNA Convention. Her study was titled " BOTULINUM A TOXIN IN THE TREATMENT OF CLUBFEET: A PRELIMINARY REPORT OF A PILOT STUDY " C.M. Alvarez, S.J. Tredwell, R.D. Beauchamp and R. Choit* (Dept of Orthopaedics, BCCH 4480 Oak St. Vancouver, BC V6H 3V4) The study was looking at the use of BOTOX instead of tenotomy in a modified version of the Ponseti method. One of their conclusions was that " This study suggests that Botox is capable of defunctioning the gastrocnemius and is sufficient to prevent clubfoot surgery in the first year. " The study is followed by this statement - " The FDA has not cleared the drug and/or medical device for the use described in this presentation, (i.e., the drug or medical device is being discussed for an " off label " use). " The full study can be seen along with the other 2002 POSNA Clubfoot studies in the files section of the Ponseti method parents support web site at http://groups.yahoo.com/group/nosurgery4clubfoot/files/ReferenceInfor m ation4/ or I will be glad to e-mail you a copy of it. The studies that have existed for the use of BOTOX for clubfoot so far have seemed to be for use prior to a 1st surgery. My opinion is that although BOTOX may hold some promise that it is still not a long term proven established method. There are probably individual doctors that have had other experience with BOTOX that has not yet been reported. Also, I don't think that Dr. Alverez ever talked to any of the doctors at the U of Iowa about using Botox with the Ponseti method. And in the newspaper articles on Botox, the Ponseti method, which sets up the whole initial correction, is never even mentioned. But there are and probably will be children for whom BOTOX will be helpful in the treatment for clubfoot. And perhaps ultimately, there will be enough long term experience to back up the intial positive one year outcomes. Also, although there may be some who have previously talked about it, I don't remember seeing any prior experiences of the use of botox after a prior surgery. and (3-17-99) > > Has anyone heard of botox used to help lengthen the heel cord? Dr. > Herzenberg mentioned it as a possible option as opposed to a second > tenotomy when we spoke about Tommy's s slipping off. He said > that some of colleagues were using it with good success. We didn't > discuss it in detail yet but was wondering if anyone has heard of > this. > > > Tommy Lee 4/23/04 BLCF...my mommy needs the botox not me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 , I'm curious- do you know if post-correction bracing was used for the Botox patients at ish Rite? I'm assuming that Dr. Alvarez is using the FAB and is just using the botox in place of the percutaneous tenotomy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Okay, what the heck is botox? I thought that was something that you put between your eyebrows!? jennyandkelly jenrichtrevillian@...> wrote: , I'm curious- do you know if post-correction bracing was used for the Botox patients at ish Rite? I'm assuming that Dr. Alvarez is using the FAB and is just using the botox in place of the percutaneous tenotomy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Okay, what the heck is botox? I thought that was something that you put between your eyebrows!? jennyandkelly jenrichtrevillian@...> wrote: , I'm curious- do you know if post-correction bracing was used for the Botox patients at ish Rite? I'm assuming that Dr. Alvarez is using the FAB and is just using the botox in place of the percutaneous tenotomy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 I know!!! One of my friends gets the injections in her forehead every 6 mos or so and it freezes or deadens the nerves so her little wrinkles up there don't show. When they told us they used Botox as part of their treatment at Childrens here in Vancouver, my hubby and I wanted to go running outta there! - & Grace > , > I'm curious- do you know if post-correction bracing was used for the > Botox patients at ish Rite? I'm assuming that Dr. Alvarez is > using the FAB and is just using the botox in place of the > percutaneous tenotomy. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 , I don't know but assume that they used post correction bracing for the 4 Botox patients. ish Rite was using AFO's for their French Physiotherapy patients so I assume that would have been used for the 4 children who had the Botox in that era at ish Rite. I don't know what type of retention Dr. Alvarez may be using. Dr. Pirani has told me that he occasionally gets patients who were in the botox program and had relapses. One of the concerns that I have had about Botox is that although it has been approved by the FDA for the treatment of eye twitching for those over 12 years of age since 1989, it's use for clubfoot has not yet been approved. But once the drug is approved by the FDA, doctors can on there own use it for other things. It wasn't until 2002 that it was approved by the FDA for wrinkles. One web site I saw indicated that there had been 1,600,000 people who have used botox. But I would guess that it has not been used on a lot of babies so far. But comparatively, Vioxx was approved by the FDA in 1999 and over 91,000,000 prescriptions were written prior to it being pulled off of the market because of links to heart and stroke risks. My guess is that it is easier to use a newer drug or newer application of a drug in Canada where Dr. Alverez is than in the United States where ish Rite is. My guess is that ish Rite looked at the 4 children that they had used it for and eventually all 4 had relapsed and needed surgery. Then when they were looking at a use of Botox for babies for clubfoot where it had not been specifically approved by the FDA, that they had problems continueing with it's use. But it may be that sometime in the future, the use of Botox for clubfoot may become more available and documented over a longer period of time. Web site called Botoxforum on potential side effects. http://www.botoxforum.com/botoxsideeffects.htm Botox debate.com http://www.botox-debate.com/botox-history.php?page=2 > > , > I'm curious- do you know if post-correction bracing was used for the > Botox patients at ish Rite? I'm assuming that Dr. Alvarez is > using the FAB and is just using the botox in place of the > percutaneous tenotomy. > Quote Link to comment Share on other sites More sharing options...
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