Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Hi all, I am an old member who hasn't checked in for awhile. My youngest daughter was born with moderate/severe bilateral clubfoot and is going to be turning 5 years old in just about 2 weeks. She is still wearing the DBB at night and has for several years now. She started the Ponseti method in Iowa when she was 5 months old after a failed attempt to correct her locally after birth here in Michigan. She has been in the DBB since about 8 months of age. We discontinued the brace when she turned 3 and then went right back into it again 2 months later to avoid a relapse. She did very well with that and it has been another 2 years of wear since then, still no problems getting her to wear the brace, she accepts it as part of bedtime. We have definitly had our share of nights off here and there since she's been older, for " special occasions " but that has never been a problem either so she looks forward to the occasional free foot night. :-) I have a couple of questions and perhaps someone might have the answers or a reference to something I can read, possibly one of the parents with an older child: After the age of 5, what is the chance of relapse? Also, if there is a relapse after that age, what is done to correct it? I am assuming that the shoe brace would not be an option for children past that age to correct a relapse? One more, is any other child still wearing the DBB at my daughters age or older? Thanks in advance for any info anyone might have. I hope everyone is doing well and hi to all our old friends as well as all the new parents here. It's a wonderful group with so much knowlege and helpful information. Holly and (bilateral born: Feb.11,2000/ mod.severe at birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Hi Holly I don't have any answers as we are not there yet. But I too am from Michigan. Whereabouts are you located? That is so encouraging to hear your daughter is doing so well! I'm sure someone will jump in here with questions, but congrats on making it this far!! 10-09-03 atypical bl cf > > Hi all, > I am an old member who hasn't checked in for awhile. My youngest > daughter was born with moderate/severe bilateral clubfoot and is > going to be turning 5 years old in just about 2 weeks. She is still > wearing the DBB at night and has for several years now. She started > the Ponseti method in Iowa when she was 5 months old after a failed > attempt to correct her locally after birth here in Michigan. She has > been in the DBB since about 8 months of age. We discontinued the > brace when she turned 3 and then went right back into it again 2 > months later to avoid a relapse. She did very well with that and it > has been another 2 years of wear since then, still no problems > getting her to wear the brace, she accepts it as part of bedtime. We > have definitly had our share of nights off here and there since she's > been older, for " special occasions " but that has never been a problem > either so she looks forward to the occasional free foot night. :-) > > I have a couple of questions and perhaps someone might have the > answers or a reference to something I can read, possibly one of the > parents with an older child: > > After the age of 5, what is the chance of relapse? Also, if there is > a relapse after that age, what is done to correct it? I am assuming > that the shoe brace would not be an option for children past that age > to correct a relapse? > One more, is any other child still wearing the DBB at my daughters > age or older? > > Thanks in advance for any info anyone might have. I hope everyone is > doing well and hi to all our old friends as well as all the new > parents here. It's a wonderful group with so much knowlege and > helpful information. > > Holly and (bilateral born: Feb.11,2000/ mod.severe at > birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Holly, I don't know statistics, but I believe that I read somewhere that the gene that causes clubfoot usually remains active until age 5-6. I think the chance of relapse greatly decreases w/ each passing year, but I don't remember where I read this. If I can find the article I'll post it. I think it's great that you are sticking with it so long, seems everyone is in a hurry to get out of the shoes and the drs. are saying " as long as they will tolerate it " . I figure the parents just have to be committed to it and then there is no question of whether or not the child will tolerate it, they just need to do it. Sounds like you and are both doing a wonderful job! > > Hi all, > I am an old member who hasn't checked in for awhile. My youngest > daughter was born with moderate/severe bilateral clubfoot and is > going to be turning 5 years old in just about 2 weeks. She is still > wearing the DBB at night and has for several years now. She started > the Ponseti method in Iowa when she was 5 months old after a failed > attempt to correct her locally after birth here in Michigan. She has > been in the DBB since about 8 months of age. We discontinued the > brace when she turned 3 and then went right back into it again 2 > months later to avoid a relapse. She did very well with that and it > has been another 2 years of wear since then, still no problems > getting her to wear the brace, she accepts it as part of bedtime. We > have definitly had our share of nights off here and there since she's > been older, for " special occasions " but that has never been a problem > either so she looks forward to the occasional free foot night. :-) > > I have a couple of questions and perhaps someone might have the > answers or a reference to something I can read, possibly one of the > parents with an older child: > > After the age of 5, what is the chance of relapse? Also, if there is > a relapse after that age, what is done to correct it? I am assuming > that the shoe brace would not be an option for children past that age > to correct a relapse? > One more, is any other child still wearing the DBB at my daughters > age or older? > > Thanks in advance for any info anyone might have. I hope everyone is > doing well and hi to all our old friends as well as all the new > parents here. It's a wonderful group with so much knowlege and > helpful information. > > Holly and (bilateral born: Feb.11,2000/ mod.severe at > birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Hey Holly- I totally remember the post when went back into the shoes. It doesn't seem like it was that long ago, but must of been because she is going to be turning 5! From everything I have read and understand regarding cf is that the foot slows down in growth dramtically after a child turns 5. The growth spurts in the foot are what can cause the cf children to relapse and they are most prevalant up until age 4-5. and Charity's children I think are the ones who have wore the brace longest on this board that still check in. I think they both stopped right before age 5. I don't know anyone that has worn it longer. I forgot what was the regression sign you saw in 's foot to put her back into the DBB??? > > Hi all, > I am an old member who hasn't checked in for awhile. My youngest > daughter was born with moderate/severe bilateral clubfoot and is > going to be turning 5 years old in just about 2 weeks. She is still > wearing the DBB at night and has for several years now. She started > the Ponseti method in Iowa when she was 5 months old after a failed > attempt to correct her locally after birth here in Michigan. She has > been in the DBB since about 8 months of age. We discontinued the > brace when she turned 3 and then went right back into it again 2 > months later to avoid a relapse. She did very well with that and it > has been another 2 years of wear since then, still no problems > getting her to wear the brace, she accepts it as part of bedtime. We > have definitly had our share of nights off here and there since she's > been older, for " special occasions " but that has never been a problem > either so she looks forward to the occasional free foot night. :-) > > I have a couple of questions and perhaps someone might have the > answers or a reference to something I can read, possibly one of the > parents with an older child: > > After the age of 5, what is the chance of relapse? Also, if there is > a relapse after that age, what is done to correct it? I am assuming > that the shoe brace would not be an option for children past that age > to correct a relapse? > One more, is any other child still wearing the DBB at my daughters > age or older? > > Thanks in advance for any info anyone might have. I hope everyone is > doing well and hi to all our old friends as well as all the new > parents here. It's a wonderful group with so much knowlege and > helpful information. > > Holly and (bilateral born: Feb.11,2000/ mod.severe at > birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Hi , Thanks for the info, that's more along the lines of what I had previously thought. I sent an email to Dr. Ponseti to update him on and asked the same question, so I'll post what he writes back to me. The shoe brace really has never been an issue for us. has always accepted it and I don't ask why, I am just greatful! Even having to go back into it at 3 years old after being out for 2 months, still we had no problems. We have always explained to her how important her " special shoes " are for night time so that her feet don't turn back in. After a certain age I think they just can understand that and even though she doesn't love them (which she actually did for a few years, kind of like a blankie!) she knows they are good for her. None the less, Believe me, she asks regularly now, can I have a " special occasion " with no shoes tonight? I think it's so close to not having to wear them anymore that she just can't wait. If I see something like a relapse again after we discontinue them, you can bet I'll be back on the phone with Dr. Ponseti discussing her wearing them until she's six if we have to. Hopefully he will have some answers for me regarding them when I hear back from him. Take care, Holly and > > > > Hi all, > > I am an old member who hasn't checked in for awhile. My youngest > > daughter was born with moderate/severe bilateral clubfoot and is > > going to be turning 5 years old in just about 2 weeks. She is still > > wearing the DBB at night and has for several years now. She started > > the Ponseti method in Iowa when she was 5 months old after a failed > > attempt to correct her locally after birth here in Michigan. She has > > been in the DBB since about 8 months of age. We discontinued the > > brace when she turned 3 and then went right back into it again 2 > > months later to avoid a relapse. She did very well with that and it > > has been another 2 years of wear since then, still no problems > > getting her to wear the brace, she accepts it as part of bedtime. We > > have definitly had our share of nights off here and there since she's > > been older, for " special occasions " but that has never been a problem > > either so she looks forward to the occasional free foot night. :-) > > > > I have a couple of questions and perhaps someone might have the > > answers or a reference to something I can read, possibly one of the > > parents with an older child: > > > > After the age of 5, what is the chance of relapse? Also, if there is > > a relapse after that age, what is done to correct it? I am assuming > > that the shoe brace would not be an option for children past that age > > to correct a relapse? > > One more, is any other child still wearing the DBB at my daughters > > age or older? > > > > Thanks in advance for any info anyone might have. I hope everyone is > > doing well and hi to all our old friends as well as all the new > > parents here. It's a wonderful group with so much knowlege and > > helpful information. > > > > Holly and (bilateral born: Feb.11,2000/ mod.severe at > > birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Hi Holly and , Nice to see you back!! I'm a lurker, but don't post often. I'm really bad at email !! Trenton is no longer in the bar, in fact we just stopped recently at almost 4 1/2 because it was becoming a huge battle. Dr. Ponseti assured me that he would be fine and that Trenton was one of the longest (if not the longest) boy bilateral in the bar, so we felt it would be OK to stop. I know Egbert stopped at 4 and the only other oldie on the list still in the bar past Trenton is I guess you and Claire Audilet, she's almost five too. Both Trenton and Claire went through a very weird period of pain a little after four that made A. and I think they were possibly having a relapse, but that was short lived. Trenton is doing great and his feet look great with the exception of a little in toeing which he has had all along. As far as age of relapse I can tell you that what's published and what's recently being discovered is changing. They have said before that we were out of the water at age 5 or for sure by 6, but I can also tell you that they have seen a couple rare cases up till age 8. Currently their are doctors researching more on why children relapse and if there is anyway to determine which children are more prone to having a relapse, etc. The key thing to keep in mind is even if they have a relapse the surgery will not be as invasive as if they didn't have the Ponseti Method. I know I continually pray that Trenton doesn't have a relapse or any other problems, but nothing can make me believe he is completely cured from having any further treatment on his feet! Hang in there and keep her in the bar as long as she will wear them! : ) Charity and Trenton (8-24-00) Bilateral and for the oldies Christmas in IOWA 2000 Update from old member. Hi all, I am an old member who hasn't checked in for awhile. My youngest daughter was born with moderate/severe bilateral clubfoot and is going to be turning 5 years old in just about 2 weeks. She is still wearing the DBB at night and has for several years now. She started the Ponseti method in Iowa when she was 5 months old after a failed attempt to correct her locally after birth here in Michigan. She has been in the DBB since about 8 months of age. We discontinued the brace when she turned 3 and then went right back into it again 2 months later to avoid a relapse. She did very well with that and it has been another 2 years of wear since then, still no problems getting her to wear the brace, she accepts it as part of bedtime. We have definitly had our share of nights off here and there since she's been older, for " special occasions " but that has never been a problem either so she looks forward to the occasional free foot night. :-) I have a couple of questions and perhaps someone might have the answers or a reference to something I can read, possibly one of the parents with an older child: After the age of 5, what is the chance of relapse? Also, if there is a relapse after that age, what is done to correct it? I am assuming that the shoe brace would not be an option for children past that age to correct a relapse? One more, is any other child still wearing the DBB at my daughters age or older? Thanks in advance for any info anyone might have. I hope everyone is doing well and hi to all our old friends as well as all the new parents here. It's a wonderful group with so much knowlege and helpful information. Holly and (bilateral born: Feb.11,2000/ mod.severe at birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Hi Charity! What kind of pain were Trenton and Claire experiencing? I'm just curious because on and off sometimes complains of a painful foot and we rub it to make it feel better.(It depends on the day but it's usually her right foot, not the left) It comes and goes once in awhile but when your clubfoot child says her foot hurts you as well as I know that we just take the deep breath and hope she was just on her feet a little longer that day than usual. But I admit the concern does enter my mind each time, just a quiet little reminder of what used to be. Other than that, we almost forget she had any problems at all. I'm so glad to hear Trenton is doing so well! And Claire and also, it's nice to catch up and see how everyone is and hear so many good reports, it's encouraging. I'll let you know what Dr. Ponseti says when I hear back from him. Holly and > Hi Holly and , > > Nice to see you back!! > > I'm a lurker, but don't post often. I'm really bad at email !! Trenton is no > longer in the bar, in fact we just stopped recently at almost 4 1/2 because > it was becoming a huge battle. Dr. Ponseti assured me that he would be fine > and that Trenton was one of the longest (if not the longest) boy bilateral > in the bar, so we felt it would be OK to stop. I know Egbert stopped > at 4 and the only other oldie on the list still in the bar past Trenton is I > guess you and Claire Audilet, she's almost five too. Both Trenton and Claire > went through a very weird period of pain a little after four that made > A. and I think they were possibly having a relapse, but that was > short lived. Trenton is doing great and his feet look great with the > exception of a little in toeing which he has had all along. As far as age of > relapse I can tell you that what's published and what's recently being > discovered is changing. They have said before that we were out of the water > at age 5 or for sure by 6, but I can also tell you that they have seen a > couple rare cases up till age 8. Currently their are doctors researching > more on why children relapse and if there is anyway to determine which > children are more prone to having a relapse, etc. The key thing to keep in > mind is even if they have a relapse the surgery will not be as invasive as > if they didn't have the Ponseti Method. I know I continually pray that > Trenton doesn't have a relapse or any other problems, but nothing can make > me believe he is completely cured from having any further treatment on his > feet! > > Hang in there and keep her in the bar as long as she will wear them! : ) > > Charity and Trenton (8-24-00) > Bilateral and for the oldies Christmas in IOWA 2000 > > > > Update from old member. > > > > Hi all, > I am an old member who hasn't checked in for awhile. My youngest > daughter was born with moderate/severe bilateral clubfoot and is > going to be turning 5 years old in just about 2 weeks. She is still > wearing the DBB at night and has for several years now. She started > the Ponseti method in Iowa when she was 5 months old after a failed > attempt to correct her locally after birth here in Michigan. She has > been in the DBB since about 8 months of age. We discontinued the > brace when she turned 3 and then went right back into it again 2 > months later to avoid a relapse. She did very well with that and it > has been another 2 years of wear since then, still no problems > getting her to wear the brace, she accepts it as part of bedtime. We > have definitly had our share of nights off here and there since she's > been older, for " special occasions " but that has never been a problem > either so she looks forward to the occasional free foot night. :-) > > I have a couple of questions and perhaps someone might have the > answers or a reference to something I can read, possibly one of the > parents with an older child: > > After the age of 5, what is the chance of relapse? Also, if there is > a relapse after that age, what is done to correct it? I am assuming > that the shoe brace would not be an option for children past that age > to correct a relapse? > One more, is any other child still wearing the DBB at my daughters > age or older? > > Thanks in advance for any info anyone might have. I hope everyone is > doing well and hi to all our old friends as well as all the new > parents here. It's a wonderful group with so much knowlege and > helpful information. > > Holly and (bilateral born: Feb.11,2000/ mod.severe at > birth/severe by the time we went to Iowa.) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Hi , 's feet started to turn inward when she walked after we discontinued the brace at age 3. It only took 2 months for that to happen and it was so very gradual that I kept thinking I was just seeing things and being a crazy mommy. One day visiting my mom I asked if she saw what I saw and she said yes. Since she sees us on a regular basis, I knew then something was up and contacted Dr. Ponseti right away. I did'nt even hesitate to put her back in her old pair of shoes on the brace that actually didn't even fit anymore. I though, some shoes were better than no shoes at this point. Dr. Ponseti ordered us a larger pair and once they arrived she was back in the brace for at least another 10 months. Her feet reponded right away and went straight back to being perfect during the day when she wasn't wearing the brace. 10 months later we went to Iowa for a check up and we " thought " to get out of the brace and Dr. Ponseti said, not quite yet. He said there had been a few relapes in children 's age and he wanted to play it safe. So, she was to stay in them until at least this past Thanksgiving and then come and see him a few months after that. We decided to make it a nice round number and leave her in them until February (her 5th birthday) instead. So, here we are just a few weeks away. I noticed with the relapse the intoeing when she walked and also her toes seemed to point in a little more than usual, but that was probably just from the intoeing. Now, she may have stopped at that point, but I don't think so, I feel in my gut that they would have gotten worse if we had left them alone and not gone back into the brace. I think I always knew was going to be in this for the long haul! Thanks for your post, hope all is well. Holly and > > > > Hi all, > > I am an old member who hasn't checked in for awhile. My youngest > > daughter was born with moderate/severe bilateral clubfoot and is > > going to be turning 5 years old in just about 2 weeks. She is > still > > wearing the DBB at night and has for several years now. She > started > > the Ponseti method in Iowa when she was 5 months old after a > failed > > attempt to correct her locally after birth here in Michigan. She > has > > been in the DBB since about 8 months of age. We discontinued the > > brace when she turned 3 and then went right back into it again 2 > > months later to avoid a relapse. She did very well with that and > it > > has been another 2 years of wear since then, still no problems > > getting her to wear the brace, she accepts it as part of bedtime. > We > > have definitly had our share of nights off here and there since > she's > > been older, for " special occasions " but that has never been a > problem > > either so she looks forward to the occasional free foot night. :-) > > > > I have a couple of questions and perhaps someone might have the > > answers or a reference to something I can read, possibly one of > the > > parents with an older child: > > > > After the age of 5, what is the chance of relapse? Also, if there > is > > a relapse after that age, what is done to correct it? I am > assuming > > that the shoe brace would not be an option for children past that > age > > to correct a relapse? > > One more, is any other child still wearing the DBB at my daughters > > age or older? > > > > Thanks in advance for any info anyone might have. I hope everyone > is > > doing well and hi to all our old friends as well as all the new > > parents here. It's a wonderful group with so much knowlege and > > helpful information. > > > > Holly and (bilateral born: Feb.11,2000/ mod.severe at > > birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Hi, Holly! So nice to hear from you! I'll pop in here about Claire.. it was an episode about a year ago. she complained several times of pain in her foot, on the side, near the ankle. I worried, of course.. (as you said, my ears perked up right away when she said " my foot hurts " .) I wondered if it was the brace (the first thing to be blamed, of course) or if she had injured herself somehow. There were no signs of relapse, her foot looked the way it always had. I contacted Dr. Ponseti and he said that a clubfoot which hasn't been operated upon shouldn't be painful. he also assured me it wasn't a sign of a beginning relapse or the fault of the brace. He did say that there is a spot near where I described where a nerve runs, and that space might be tighter in her foot than in a normal foot, but he doubted it would be chronic and that it would likely go away, which it did... even before he wrote back to me, which of course made it easy for me to stop thinking about it. It hasn't happened since.. though I guess that doesn't mean it won't ever.. But she's been doing great.. She's 4 1/2 now. Her big interest now is ballet, which I figure is helpful exercise/therapy for her, disguised as fun. Glad to hear about ! can't believe she's 5. There's a message in the archives with info from Dr. Morcuende on relapse risk rates at various ages; I'll post that for you when I dig it up. best to you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Its great news to me to hear how your little ones have progressed. In a way I will be glad to be where you are now, but don't want my baby to grow so quickly.... Sharon and Claire atemc@...> wrote: Hi, Holly! So nice to hear from you! I'll pop in here about Claire.. it was an episode about a year ago. she complained several times of pain in her foot, on the side, near the ankle. I worried, of course.. (as you said, my ears perked up right away when she said " my foot hurts " .) I wondered if it was the brace (the first thing to be blamed, of course) or if she had injured herself somehow. There were no signs of relapse, her foot looked the way it always had. I contacted Dr. Ponseti and he said that a clubfoot which hasn't been operated upon shouldn't be painful. he also assured me it wasn't a sign of a beginning relapse or the fault of the brace. He did say that there is a spot near where I described where a nerve runs, and that space might be tighter in her foot than in a normal foot, but he doubted it would be chronic and that it would likely go away, which it did... even before he wrote back to me, which of course made it easy for me to stop thinking about it. It hasn't happened since.. though I guess that doesn't mean it won't ever.. But she's been doing great.. She's 4 1/2 now. Her big interest now is ballet, which I figure is helpful exercise/therapy for her, disguised as fun. Glad to hear about ! can't believe she's 5. There's a message in the archives with info from Dr. Morcuende on relapse risk rates at various ages; I'll post that for you when I dig it up. best to you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 , That is too weird.... I just went through something very similar with Becky. She is almost 3 1/2 and she started telling me that her foot hurt, just on the outside near the ankle. I took her in to be checked and they said that they didn't see any reason why it should be bothering her, and Dr. P said about the same thing. I had chalked it up to growing pains. But like you the first thing I blamed was the FAB!!! hahaha The pain began back in December, and about a week ago she stopped comlaining about it. BTW, Becky is bilateral and was always complaining about her left foot.... what is silly is that her right foot is the worse of the two!! hahaha JUst thought I would share before I head off to bed! , mommy to Becky 3 1/2, bilateral clubfoot.... trying very hard to make a stubborn girl continue with the use of her " night time shoes " ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > Hi, Holly! > > So nice to hear from you! > > I'll pop in here about Claire.. it was an episode about a year ago. > she complained several times of pain in her foot, on the side, near > the ankle. I worried, of course.. (as you said, my ears perked up > right away when she said " my foot hurts " .) I wondered if it was the > brace (the first thing to be blamed, of course) or if she had injured > herself somehow. There were no signs of relapse, her foot looked the > way it always had. > > I contacted Dr. Ponseti and he said that a clubfoot which hasn't been > operated upon shouldn't be painful. he also assured me it wasn't a > sign of a beginning relapse or the fault of the brace. He did say > that there is a spot near where I described where a nerve runs, and > that space might be tighter in her foot than in a normal foot, but he > doubted it would be chronic and that it would likely go away, which > it did... even before he wrote back to me, which of course made it > easy for me to stop thinking about it. > > It hasn't happened since.. though I guess that doesn't mean it won't > ever.. But she's been doing great.. She's 4 1/2 now. Her big interest > now is ballet, which I figure is helpful exercise/therapy for her, > disguised as fun. > > Glad to hear about ! can't believe she's 5. > > There's a message in the archives with info from Dr. Morcuende on > relapse risk rates at various ages; I'll post that for you when I dig > it up. > > best to you, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Holly, I did the same thing, I emailed Dr. Dobbs and asked him. I just love the fact that these docs are so responsive. Anytime I have a question I feel totally comfortable dropping him a line to ask. He said the oldest case reported of a relapse is age 7 and that the relapse rate drops to less than 5% after age 4. Good luck w/ big #5, my daughter (non-cf) will be 4 in a couple months and I just can't believe how time flies! I bet Sammy will be out of his shoes before I can even imagine (he's just 4 months, we're still 23/7, he's got another 8 weeks of that still to go). > > > > > > Hi all, > > > I am an old member who hasn't checked in for awhile. My youngest > > > daughter was born with moderate/severe bilateral clubfoot and is > > > going to be turning 5 years old in just about 2 weeks. She is > still > > > wearing the DBB at night and has for several years now. She > started > > > the Ponseti method in Iowa when she was 5 months old after a > failed > > > attempt to correct her locally after birth here in Michigan. She > has > > > been in the DBB since about 8 months of age. We discontinued the > > > brace when she turned 3 and then went right back into it again 2 > > > months later to avoid a relapse. She did very well with that and > it > > > has been another 2 years of wear since then, still no problems > > > getting her to wear the brace, she accepts it as part of bedtime. > We > > > have definitly had our share of nights off here and there since > she's > > > been older, for " special occasions " but that has never been a > problem > > > either so she looks forward to the occasional free foot night. :-) > > > > > > I have a couple of questions and perhaps someone might have the > > > answers or a reference to something I can read, possibly one of > the > > > parents with an older child: > > > > > > After the age of 5, what is the chance of relapse? Also, if there > is > > > a relapse after that age, what is done to correct it? I am > assuming > > > that the shoe brace would not be an option for children past that > age > > > to correct a relapse? > > > One more, is any other child still wearing the DBB at my > daughters > > > age or older? > > > > > > Thanks in advance for any info anyone might have. I hope everyone > is > > > doing well and hi to all our old friends as well as all the new > > > parents here. It's a wonderful group with so much knowlege and > > > helpful information. > > > > > > Holly and (bilateral born: Feb.11,2000/ mod.severe at > > > birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Hi and Claire! It's great to hear how well Claire is doing, again, what an inspiration for me to see so many old friends doing so well without the brace anymore.:-) Hey, have you heard from Joy and Rose? How are all those girls doing? She's probably a busy mom these days! When is Claire's next appointment or does she not have one this year? We will be in Iowa sometime late spring (if all goes well!). Thanks for the relapse information, that's just what I was looking for. Holly and > > Hi, Holly! > > So nice to hear from you! > > I'll pop in here about Claire.. it was an episode about a year ago. > she complained several times of pain in her foot, on the side, near > the ankle. I worried, of course.. (as you said, my ears perked up > right away when she said " my foot hurts " .) I wondered if it was the > brace (the first thing to be blamed, of course) or if she had injured > herself somehow. There were no signs of relapse, her foot looked the > way it always had. > > I contacted Dr. Ponseti and he said that a clubfoot which hasn't been > operated upon shouldn't be painful. he also assured me it wasn't a > sign of a beginning relapse or the fault of the brace. He did say > that there is a spot near where I described where a nerve runs, and > that space might be tighter in her foot than in a normal foot, but he > doubted it would be chronic and that it would likely go away, which > it did... even before he wrote back to me, which of course made it > easy for me to stop thinking about it. > > It hasn't happened since.. though I guess that doesn't mean it won't > ever.. But she's been doing great.. She's 4 1/2 now. Her big interest > now is ballet, which I figure is helpful exercise/therapy for her, > disguised as fun. > > Glad to hear about ! can't believe she's 5. > > There's a message in the archives with info from Dr. Morcuende on > relapse risk rates at various ages; I'll post that for you when I dig > it up. > > best to you, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 , Your right, time sure will fly by with your little one. I'm sure your 4 year old will keep you so busy you won't have much time to worry or think for that matter! :-) My oldest turns 8 on Saturday, I just can't believe it. There is 3 years between my girls and every time I look at them I can't believe how big they are getting. I know what you mean about the doctors being so generous with their time. I don't talk with Dr. Ponseti much these days but when I need to, he always gets back with me. He's the only doctor we have ever had that experience with. I remember emailing him our story and asking for advice when 's treatments weren't going well after she was born. She was almost 5 months and we had just learned that Dr. Ponseti had just come back from retirement to help more of these children. We figured by then was much too old for his treatment because at the time up to 3 months was the window of opportunity. He graciously called us on the phone the next day, it was a Saturday. I couldn't believe it! And a few days later we were off to Iowa as one of his oldest patients to start the method. Now look at all the children starting even much older than that and getting great results, it's amazing to me still. Well, speaking of doctors, have to go wait for SOMEONE to call me back, has a respiratory thing going on and I can't seem to get a hold of her doctor to get a prescription sent in. We were just there the day before yesterday, I guess they wanted to wait for her to really get sick. Ahhh, I just love Michigan winters, ha-ha! Holly and > > > > > > > > Hi all, > > > > I am an old member who hasn't checked in for awhile. My youngest > > > > daughter was born with moderate/severe bilateral clubfoot and is > > > > going to be turning 5 years old in just about 2 weeks. She is > > still > > > > wearing the DBB at night and has for several years now. She > > started > > > > the Ponseti method in Iowa when she was 5 months old after a > > failed > > > > attempt to correct her locally after birth here in Michigan. She > > has > > > > been in the DBB since about 8 months of age. We discontinued the > > > > brace when she turned 3 and then went right back into it again 2 > > > > months later to avoid a relapse. She did very well with that and > > it > > > > has been another 2 years of wear since then, still no problems > > > > getting her to wear the brace, she accepts it as part of bedtime. > > We > > > > have definitly had our share of nights off here and there since > > she's > > > > been older, for " special occasions " but that has never been a > > problem > > > > either so she looks forward to the occasional free foot night. :-) > > > > > > > > I have a couple of questions and perhaps someone might have the > > > > answers or a reference to something I can read, possibly one of > > the > > > > parents with an older child: > > > > > > > > After the age of 5, what is the chance of relapse? Also, if there > > is > > > > a relapse after that age, what is done to correct it? I am > > assuming > > > > that the shoe brace would not be an option for children past that > > age > > > > to correct a relapse? > > > > One more, is any other child still wearing the DBB at my > > daughters > > > > age or older? > > > > > > > > Thanks in advance for any info anyone might have. I hope everyone > > is > > > > doing well and hi to all our old friends as well as all the new > > > > parents here. It's a wonderful group with so much knowlege and > > > > helpful information. > > > > > > > > Holly and (bilateral born: Feb.11,2000/ mod.severe at > > > > birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 , Sorry I missed this post yesterday but caught it tonight. Hi! We live about an hour outside of Detroit, Livingston County. Where are you in Michigan? Which doctor are you using for the Ponseti method, anyone here in Michigan? Just curious because I have heard there is one or two around using the method successfully although I don't know who they are. We started at U of M when was born then switched to the University of Iowa at 5 months of age. So, how are you liking this drastically cold weather these days? We got 12-16 inches dumped on us last Saturday and my husband was out of town. My dad and brother came and dug us out. I was born and raised out west grew up mostly in Arizona so most days I still wonder what on earth I am still doing here. I have to admit, the summers are just beautiful though (and spring and fall) so I guess it really has grown on me more than I sometimes admit! Talk you later, Holly and > > > > Hi all, > > I am an old member who hasn't checked in for awhile. My youngest > > daughter was born with moderate/severe bilateral clubfoot and is > > going to be turning 5 years old in just about 2 weeks. She is still > > wearing the DBB at night and has for several years now. She started > > the Ponseti method in Iowa when she was 5 months old after a failed > > attempt to correct her locally after birth here in Michigan. She has > > been in the DBB since about 8 months of age. We discontinued the > > brace when she turned 3 and then went right back into it again 2 > > months later to avoid a relapse. She did very well with that and it > > has been another 2 years of wear since then, still no problems > > getting her to wear the brace, she accepts it as part of bedtime. We > > have definitly had our share of nights off here and there since she's > > been older, for " special occasions " but that has never been a problem > > either so she looks forward to the occasional free foot night. :-) > > > > I have a couple of questions and perhaps someone might have the > > answers or a reference to something I can read, possibly one of the > > parents with an older child: > > > > After the age of 5, what is the chance of relapse? Also, if there is > > a relapse after that age, what is done to correct it? I am assuming > > that the shoe brace would not be an option for children past that age > > to correct a relapse? > > One more, is any other child still wearing the DBB at my daughters > > age or older? > > > > Thanks in advance for any info anyone might have. I hope everyone is > > doing well and hi to all our old friends as well as all the new > > parents here. It's a wonderful group with so much knowlege and > > helpful information. > > > > Holly and (bilateral born: Feb.11,2000/ mod.severe at > > birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 Hi Holly, We live in Grand Rapids and actually there is now a doctor just across the street from me that is ponseti certified now. He wasn't when we went through all our problems and we too packed up and headed to Iowa. But we made the jump too late, one surgery later and being 8 months. Dr. Ponseti was a godsend. But even he couldn't fix the damage done from the surgery and jasons feet were so very severe. He casted jason for about 8 1/2 weeks every five days and then did another posterior release and capsulectomy I think it was called. I am hating the snow, but loving the sunshine right now. I am not a snow person at all, but if the sun's here it's not too bad. yeah, we got tht much too and yeah, digging out is the appropriate term. It's nice to know someone who is so close, there are a few other people here from michigan, but not too many. Nice to meet you, atypical bl cf 10-09-03 > > > > > > Hi all, > > > I am an old member who hasn't checked in for awhile. My youngest > > > daughter was born with moderate/severe bilateral clubfoot and is > > > going to be turning 5 years old in just about 2 weeks. She is > still > > > wearing the DBB at night and has for several years now. She > started > > > the Ponseti method in Iowa when she was 5 months old after a > failed > > > attempt to correct her locally after birth here in Michigan. She > has > > > been in the DBB since about 8 months of age. We discontinued the > > > brace when she turned 3 and then went right back into it again 2 > > > months later to avoid a relapse. She did very well with that and > it > > > has been another 2 years of wear since then, still no problems > > > getting her to wear the brace, she accepts it as part of bedtime. > We > > > have definitly had our share of nights off here and there since > she's > > > been older, for " special occasions " but that has never been a > problem > > > either so she looks forward to the occasional free foot night. :-) > > > > > > I have a couple of questions and perhaps someone might have the > > > answers or a reference to something I can read, possibly one of > the > > > parents with an older child: > > > > > > After the age of 5, what is the chance of relapse? Also, if there > is > > > a relapse after that age, what is done to correct it? I am > assuming > > > that the shoe brace would not be an option for children past that > age > > > to correct a relapse? > > > One more, is any other child still wearing the DBB at my > daughters > > > age or older? > > > > > > Thanks in advance for any info anyone might have. I hope everyone > is > > > doing well and hi to all our old friends as well as all the new > > > parents here. It's a wonderful group with so much knowlege and > > > helpful information. > > > > > > Holly and (bilateral born: Feb.11,2000/ mod.severe at > > > birth/severe by the time we went to Iowa.) Quote Link to comment Share on other sites More sharing options...
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