Guest guest Posted June 15, 2006 Report Share Posted June 15, 2006 Hi . You have come to the right place for encouragement and to get questions answered. I'm sorry Caleb needs another tenotomy. My daughter, , had a second tenotomy too on her right foot. This was only because her first doctor was incompetent and we ended up getting a 2nd opinion, after discovering this great list! We too had the problem of her feet not staying in the shoes. It was a constant battle, constant screaming on her part, and us parents in constant tears. We later came to the conclusion her feet were not corrected all the way in the first place, thus causing her extreme pain in the DBB (Dennis Brown Bar) and her feet slipping out. This doesn't mean this is what's happening in your son's case. My daughter was 5 months old when she started treatment over from the beginning. I think it was harder on us parents than her. She handled the casts the second time around with no problems. Other than a lot of strange looks from strangers, because it was summer time and her legs were always exposed, we didn't have any problems. Also, because we were seeing the best doctor on the East coast (IMO), her feet were completely corrected and then had no troubles with the DBB after that. I do have to tell you though we switched to the brace which I feel is a little gentler and more comfortable on the babes feet. Where in the US are you located? HTH. and , 3-2-04, P/M's 14 hours kelors7682 wrote: Hi. My name is and my son Caleb is 8 months old who was born with bilateral club feet--my gift to him. I too had bilateral club feet but I had to go through so many surgeries until I was 7 years old. Caleb, is actually seeing the same doctor I had when I was a child. I think that's kind of neat. Anyway, when Caleb was 6 days old, the Ponsetti treatment began with weeks of castings. He then had the tetonomy (not sure how to spell it)the minor surgery of lengthening the heel cord. He had casts one more month after that. Then at 3 months old he got his first pair of the Denison Brown orthopaedic brace shoes. They are such a pain!!! Well, he's had those for 5 months now. Wearing them day and night. And his heels are still up too high. When he stands up, they look normal. But when he's not bearing weight on them, they are up too high. So, his doctor says he needs to have a second tetonomy. But since Caleb is 8 months old, his doctor can't do it in the office. It has to be done at a hospital. And with insurance reasons, blah blah blah, his doctor can't so we're meeting a new doctor in July who apparently will do the second tetonomy. I'm just so discouraged. I just want this all to be over with. Caleb slips out of his shoes 5 times a day and wakes up in the morning with at least one off. He was sleeping through the night, but not recently. I blame the shoes, because with one on and one off, the bar twists his poor foot and he wakes up screaming. Sorry for rambling on. I'm just seeking some encouragement. I know Caleb will be able to walk and run. I don't doubt that. I;m nervous about the second tetonomy and going back into casts after he's been out of them for 5 months now. Any advice? Thanks __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2006 Report Share Posted June 15, 2006 Hi , Thanks for your reply. We're in Cocoa, FL. Yeah, I guess I'm not thrilled about casts in the summer time. It's all ready so hot. Hm, what is the brace like? I'm not familiar with it. All I know is I loathe the Denis Brown and will celebrate like never before when Caleb is forever free from it's grasp. So your daughter had a second tetonomy too? Well, I like to believe that his doctor knows what he's doing, and it's no fault of his that Caleb isn't progressing as quickly as hoped. I don't know. At first, everything looked beautiful, but as months passed, his heels are still too high. I'm just anxious in meeting this new doctor in a couple weeks. Thanks so much for replying! It's so encouraging to know that other parents have gone through the same exact thing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2006 Report Share Posted June 15, 2006 Hi , So glad you are here! This site has helped me so much over the last 2 years. There is not much I can add to what said, but I just wanted to tell you to stay positive. It seems hard right now when your baby in uncomfortable, but things will get better. It might just take a little while! Were Caleb's heels ever down in his shoes? Did his feet look fully corrected? I think you made the right decision getting a second opinion because it seems he was in casts for a while especially a month after the tenotomy. It isn't unheard of, but doesn't really follow the Ponseti method. Was his foot corrected before the tenotomy? All that should have needed fixing was to get rid of the stiffness. When he first went into the dbb, his heels should have went down into the shoes if you were putting them on correctly. Did his feet correct and look normal fairly quickly? How many casts did it take? I ask because maybe his feet are atypical. If this is the case they are harder (but not impossible) to treat, tighter, and the Ponseti- brace is highly recommended if not required for these kiddos. It really sounds like the foot isn't 100% corrected, but without pictures it is hard to say. Below is a great wealth of information that also has a link to qualified doctors. Since you are getting a second opinion it may as well be with a Ponseti doctor. Another thing you can do it post your location. Many parents have found doctors that are successful and correctly doing the Ponseti method but aren't on the list. http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/inde\ x.html Keep your head up! It will get better soon! 11/19/04 bcf Shook wrote: Hi . You have come to the right place for encouragement and to get questions answered. I'm sorry Caleb needs another tenotomy. My daughter, , had a second tenotomy too on her right foot. This was only because her first doctor was incompetent and we ended up getting a 2nd opinion, after discovering this great list! We too had the problem of her feet not staying in the shoes. It was a constant battle, constant screaming on her part, and us parents in constant tears. We later came to the conclusion her feet were not corrected all the way in the first place, thus causing her extreme pain in the DBB (Dennis Brown Bar) and her feet slipping out. This doesn't mean this is what's happening in your son's case. My daughter was 5 months old when she started treatment over from the beginning. I think it was harder on us parents than her. She handled the casts the second time around with no problems. Other than a lot of strange looks from strangers, because it was summer time and her legs were always exposed, we didn't have any problems. Also, because we were seeing the best doctor on the East coast (IMO), her feet were completely corrected and then had no troubles with the DBB after that. I do have to tell you though we switched to the brace which I feel is a little gentler and more comfortable on the babes feet. Where in the US are you located? HTH. and , 3-2-04, P/M's 14 hours kelors7682 wrote: Hi. My name is and my son Caleb is 8 months old who was born with bilateral club feet--my gift to him. I too had bilateral club feet but I had to go through so many surgeries until I was 7 years old. Caleb, is actually seeing the same doctor I had when I was a child. I think that's kind of neat. Anyway, when Caleb was 6 days old, the Ponsetti treatment began with weeks of castings. He then had the tetonomy (not sure how to spell it)the minor surgery of lengthening the heel cord. He had casts one more month after that. Then at 3 months old he got his first pair of the Denison Brown orthopaedic brace shoes. They are such a pain!!! Well, he's had those for 5 months now. Wearing them day and night. And his heels are still up too high. When he stands up, they look normal. But when he's not bearing weight on them, they are up too high. So, his doctor says he needs to have a second tetonomy. But since Caleb is 8 months old, his doctor can't do it in the office. It has to be done at a hospital. And with insurance reasons, blah blah blah, his doctor can't so we're meeting a new doctor in July who apparently will do the second tetonomy. I'm just so discouraged. I just want this all to be over with. Caleb slips out of his shoes 5 times a day and wakes up in the morning with at least one off. He was sleeping through the night, but not recently. I blame the shoes, because with one on and one off, the bar twists his poor foot and he wakes up screaming. Sorry for rambling on. I'm just seeking some encouragement. I know Caleb will be able to walk and run. I don't doubt that. I;m nervous about the second tetonomy and going back into casts after he's been out of them for 5 months now. Any advice? Thanks __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Hi Our son Josh is now 4 years old and has been treated since birth by a Consultant who is on Dr Ponseti’s website. Like your son our son had to have a second tenotomy, although the Achilles tendon was not cut like the first operation but lengthened – You should make sure that your doctor is lengthening the tendon not cutting it as this can weaken it. Children treated with Ponseti should be able to stand on their tiptoes however Josh couldn’t because his heals were still very high. Our Consultant was speaking directly to Dr Ponseti regarding what course of action he should take and this was his advice. (Josh also has lax ligaments) Josh was 2 yrs old when he got the second operation, which was done under general anaesthetic. It took maybe 2-3 hrs then he was in casts for approx 3 weeks. Anyhow it was a total success. Before the op he couldn’t stand on his tiptoes and he had no arch in his feet, now that is totally corrected. He came out of his boots at 2 years 10months (again on advice from dr P) Last year we attended a conference where Fred Dietz examined Josh’s feet and he said they looked fantastic – he was very pleased. Josh jumps on the trampoline everyday, runs, and does everything other kids do at 4 yrs old – You would never know he had talipes. As for Caleb slipping out of the boots, we had strips of sponge stuck at the top of each boot (on the inside) this was supplied with the boots we used 4 years ago, although I know the more recent ones have it built in – It’s hard to describe but it wasn’t hard or soft but it made it hard for Josh to wriggle out of his boots. I do remember thinking how sore it must have been anytime one foot came out, although this didn’t happen too often - you should also put socks on him that have the rubber grips on the sole – I think you can get these in Gap…….. Anyhow – don’t be discouraged, it will all work out fine and just be thankful Caleb isn’t walking – he should still be happy to wriggle about or be pushed in the pram. Josh was such a weight to carry about and he was speaking so he kept saying “off” (about the casts) Anyhow, hope all goes well for you both. Best wishes a-Anne _____ From: nosurgery4clubfoot [mailto:nosurgery4clubfoot ] On Behalf Of Shook Sent: 15 June 2006 21:11 To: nosurgery4clubfoot Subject: Re: Seeking encouragement Hi . You have come to the right place for encouragement and to get questions answered. I'm sorry Caleb needs another tenotomy. My daughter, , had a second tenotomy too on her right foot. This was only because her first doctor was incompetent and we ended up getting a 2nd opinion, after discovering this great list! We too had the problem of her feet not staying in the shoes. It was a constant battle, constant screaming on her part, and us parents in constant tears. We later came to the conclusion her feet were not corrected all the way in the first place, thus causing her extreme pain in the DBB (Dennis Brown Bar) and her feet slipping out. This doesn't mean this is what's happening in your son's case. My daughter was 5 months old when she started treatment over from the beginning. I think it was harder on us parents than her. She handled the casts the second time around with no problems. Other than a lot of strange looks from strangers, because it was summer time and her legs were always exposed, we didn't have any problems. Also, because we were seeing the best doctor on the East coast (IMO), her feet were completely corrected and then had no troubles with the DBB after that. I do have to tell you though we switched to the brace which I feel is a little gentler and more comfortable on the babes feet. Where in the US are you located? HTH. and , 3-2-04, P/M's 14 hours kelors7682 <HYPERLINK " mailto:bat_bubbles_67%40hotmail.com " bat_bubbles_-67 (AT) hotmail (DOT) -com> wrote: Hi. My name is and my son Caleb is 8 months old who was born with bilateral club feet--my gift to him. I too had bilateral club feet but I had to go through so many surgeries until I was 7 years old. Caleb, is actually seeing the same doctor I had when I was a child. I think that's kind of neat. Anyway, when Caleb was 6 days old, the Ponsetti treatment began with weeks of castings. He then had the tetonomy (not sure how to spell it)the minor surgery of lengthening the heel cord. He had casts one more month after that. Then at 3 months old he got his first pair of the Denison Brown orthopaedic brace shoes. They are such a pain!!! Well, he's had those for 5 months now. Wearing them day and night. And his heels are still up too high. When he stands up, they look normal. But when he's not bearing weight on them, they are up too high. So, his doctor says he needs to have a second tetonomy. But since Caleb is 8 months old, his doctor can't do it in the office. It has to be done at a hospital. And with insurance reasons, blah blah blah, his doctor can't so we're meeting a new doctor in July who apparently will do the second tetonomy. I'm just so discouraged. I just want this all to be over with. Caleb slips out of his shoes 5 times a day and wakes up in the morning with at least one off. He was sleeping through the night, but not recently. I blame the shoes, because with one on and one off, the bar twists his poor foot and he wakes up screaming. Sorry for rambling on. I'm just seeking some encouragement. I know Caleb will be able to walk and run. I don't doubt that. I;m nervous about the second tetonomy and going back into casts after he's been out of them for 5 months now. Any advice? Thanks ____________-_________-_________-_________-_________-__ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 , Sadly, there are many of us here who truly believed that our doctors knew what they were doing, but then ended up wasting weeks or months heading down the wrong path before we ended up bringing our kids to someone else. This is one life-lesson that I personally learned from our clubfoot journey...I don't ever blindly trust doctors anymore, I question *everything*. Some parents have gone through strings of doctors before finding one who could competently treat clubfoot, though not many doctors would ever admit that they weren't proficient or didn't have much experience with clubfoot treatment non-surgically. It's really hard as a parent (even for some with medical backgrounds) to question a doctor about protocol and know when to seek out second or third opinions. The important thing is to follow your mommy instincts, research as much as possible, never stop asking questions and to remember that you are your son's advocate! You're doing a great job and I'm confident that he'll be back on track again shortly. I am willing to bet that the problems that you had with the brace were due to his foot not being completely corrected and maybe also from improper brace set up. The odd thing is that there are a few families here on the board who have had difficulty finding good doctors in Florida as well. Marcia (Jana's mom) and Jenn ('s mom) are two who do have " Florida experience " , so they might be able to help you out with references on who to go to and who to avoid. There's a parent's checklist at this site: http://members.tripod.com/ponseti_links-ivil that will give you a list of question ideas to work from when meeting with your new doctor. Hang in there! Regards, & (3-16-00, lcf) > > Hi , > > Thanks for your reply. We're in Cocoa, FL. Yeah, I guess I'm not > thrilled about casts in the summer time. It's all ready so hot. Hm, > what is the brace like? I'm not familiar with it. All I > know is I loathe the Denis Brown and will celebrate like never before > when Caleb is forever free from it's grasp. So your daughter had > a second tetonomy too? Well, I like to believe that his doctor knows > what he's doing, and it's no fault of his that Caleb isn't progressing > as quickly as hoped. I don't know. At first, everything looked > beautiful, but as months passed, his heels are still too high. I'm > just anxious in meeting this new doctor in a couple weeks. Thanks so > much for replying! It's so encouraging to know that other parents > have gone through the same exact thing! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 I was just reading your post and was wondering if you could tell me what the difference is between the achilles " lengthening " and " cutting " ? What would a tenotomy be classified as? (my son had a tenotomy) and I take it to mean snipping of the heel tendon, but are there different ways of doing it? Philip Knox wrote: Hi Our son Josh is now 4 years old and has been treated since birth by a Consultant who is on Dr Ponseti’s website. Like your son our son had to have a second tenotomy, although the Achilles tendon was not cut like the first operation but lengthened – You should make sure that your doctor is lengthening the tendon not cutting it as this can weaken it. Children treated with Ponseti should be able to stand on their tiptoes however Josh couldn’t because his heals were still very high. Our Consultant was speaking directly to Dr Ponseti regarding what course of action he should take and this was his advice. (Josh also has lax ligaments) Josh was 2 yrs old when he got the second operation, which was done under general anaesthetic. It took maybe 2-3 hrs then he was in casts for approx 3 weeks. Anyhow it was a total success. Before the op he couldn’t stand on his tiptoes and he had no arch in his feet, now that is totally corrected. He came out of his boots at 2 years 10months (again on advice from dr P) Last year we attended a conference where Fred Dietz examined Josh’s feet and he said they looked fantastic – he was very pleased. Josh jumps on the trampoline everyday, runs, and does everything other kids do at 4 yrs old – You would never know he had talipes. As for Caleb slipping out of the boots, we had strips of sponge stuck at the top of each boot (on the inside) this was supplied with the boots we used 4 years ago, although I know the more recent ones have it built in – It’s hard to describe but it wasn’t hard or soft but it made it hard for Josh to wriggle out of his boots. I do remember thinking how sore it must have been anytime one foot came out, although this didn’t happen too often - you should also put socks on him that have the rubber grips on the sole – I think you can get these in Gap…….. Anyhow – don’t be discouraged, it will all work out fine and just be thankful Caleb isn’t walking – he should still be happy to wriggle about or be pushed in the pram. Josh was such a weight to carry about and he was speaking so he kept saying “off” (about the casts) Anyhow, hope all goes well for you both. Best wishes a-Anne _____ From: nosurgery4clubfoot [mailto:nosurgery4clubfoot ] On Behalf Of Shook Sent: 15 June 2006 21:11 To: nosurgery4clubfoot Subject: Re: Seeking encouragement Hi . You have come to the right place for encouragement and to get questions answered. I'm sorry Caleb needs another tenotomy. My daughter, , had a second tenotomy too on her right foot. This was only because her first doctor was incompetent and we ended up getting a 2nd opinion, after discovering this great list! We too had the problem of her feet not staying in the shoes. It was a constant battle, constant screaming on her part, and us parents in constant tears. We later came to the conclusion her feet were not corrected all the way in the first place, thus causing her extreme pain in the DBB (Dennis Brown Bar) and her feet slipping out. This doesn't mean this is what's happening in your son's case. My daughter was 5 months old when she started treatment over from the beginning. I think it was harder on us parents than her. She handled the casts the second time around with no problems. Other than a lot of strange looks from strangers, because it was summer time and her legs were always exposed, we didn't have any problems. Also, because we were seeing the best doctor on the East coast (IMO), her feet were completely corrected and then had no troubles with the DBB after that. I do have to tell you though we switched to the brace which I feel is a little gentler and more comfortable on the babes feet. Where in the US are you located? HTH. and , 3-2-04, P/M's 14 hours kelors7682 " mailto:bat_bubbles_67%40hotmail.com " bat_bubbles_-67 (AT) hotmail (DOT) -com> wrote: Hi. My name is and my son Caleb is 8 months old who was born with bilateral club feet--my gift to him. I too had bilateral club feet but I had to go through so many surgeries until I was 7 years old. Caleb, is actually seeing the same doctor I had when I was a child. I think that's kind of neat. Anyway, when Caleb was 6 days old, the Ponsetti treatment began with weeks of castings. He then had the tetonomy (not sure how to spell it)the minor surgery of lengthening the heel cord. He had casts one more month after that. Then at 3 months old he got his first pair of the Denison Brown orthopaedic brace shoes. They are such a pain!!! Well, he's had those for 5 months now. Wearing them day and night. And his heels are still up too high. When he stands up, they look normal. But when he's not bearing weight on them, they are up too high. So, his doctor says he needs to have a second tetonomy. But since Caleb is 8 months old, his doctor can't do it in the office. It has to be done at a hospital. And with insurance reasons, blah blah blah, his doctor can't so we're meeting a new doctor in July who apparently will do the second tetonomy. I'm just so discouraged. I just want this all to be over with. Caleb slips out of his shoes 5 times a day and wakes up in the morning with at least one off. He was sleeping through the night, but not recently. I blame the shoes, because with one on and one off, the bar twists his poor foot and he wakes up screaming. Sorry for rambling on. I'm just seeking some encouragement. I know Caleb will be able to walk and run. I don't doubt that. I;m nervous about the second tetonomy and going back into casts after he's been out of them for 5 months now. Any advice? Thanks ____________-_________-_________-_________-_________-__ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 The lengthening op is a slightly more complicated and precise procedure where the Achilles is lengthened to the exact measurement required to drop the heel. During a tenotomy the Achilles is cut allowing the heel to drop, Josh’s heel did not drop enough and needed to be lengthened surgically thus requiring the additional op. It was nothing serious although Josh was under a general for a couple of hours but got over it very quickly. The results have been remarkable and you would not know there had ever been anything wrong with him. _____ From: nosurgery4clubfoot [mailto:nosurgery4clubfoot ] On Behalf Of needing prayers Sent: 16 June 2006 16:31 To: nosurgery4clubfoot Subject: RE: Seeking encouragement I was just reading your post and was wondering if you could tell me what the difference is between the achilles " lengthening " and " cutting " ? What would a tenotomy be classified as? (my son had a tenotomy) and I take it to mean snipping of the heel tendon, but are there different ways of doing it? Philip Knox <HYPERLINK " mailto:philip.knox%40tiscali.co.uk " philip.knox@-tiscali.co.-uk> wrote: Hi Our son Josh is now 4 years old and has been treated since birth by a Consultant who is on Dr Ponseti’s website. Like your son our son had to have a second tenotomy, although the Achilles tendon was not cut like the first operation but lengthened – You should make sure that your doctor is lengthening the tendon not cutting it as this can weaken it. Children treated with Ponseti should be able to stand on their tiptoes however Josh couldn’t because his heals were still very high. Our Consultant was speaking directly to Dr Ponseti regarding what course of action he should take and this was his advice. (Josh also has lax ligaments) Josh was 2 yrs old when he got the second operation, which was done under general anaesthetic. It took maybe 2-3 hrs then he was in casts for approx 3 weeks. Anyhow it was a total success. Before the op he couldn’t stand on his tiptoes and he had no arch in his feet, now that is totally corrected. He came out of his boots at 2 years 10months (again on advice from dr P) Last year we attended a conference where Fred Dietz examined Josh’s feet and he said they looked fantastic – he was very pleased. Josh jumps on the trampoline everyday, runs, and does everything other kids do at 4 yrs old – You would never know he had talipes. As for Caleb slipping out of the boots, we had strips of sponge stuck at the top of each boot (on the inside) this was supplied with the boots we used 4 years ago, although I know the more recent ones have it built in – It’s hard to describe but it wasn’t hard or soft but it made it hard for Josh to wriggle out of his boots. I do remember thinking how sore it must have been anytime one foot came out, although this didn’t happen too often - you should also put socks on him that have the rubber grips on the sole – I think you can get these in Gap…….. Anyhow – don’t be discouraged, it will all work out fine and just be thankful Caleb isn’t walking – he should still be happy to wriggle about or be pushed in the pram. Josh was such a weight to carry about and he was speaking so he kept saying “off” (about the casts) Anyhow, hope all goes well for you both. Best wishes a-Anne _____ From: HYPERLINK " mailto:nosurgery4clubfoot%40yahoogroups.com " nosurgery4clubfoot@-yahoogroups ..-com [mailto:HYPERLINK " mailto:nosurgery4clubfoot%40yahoogroups.com " nosurgery4clubfoot@-yahoogroups ..-com] On Behalf Of Shook Sent: 15 June 2006 21:11 To: HYPERLINK " mailto:nosurgery4clubfoot%40yahoogroups.com " nosurgery4clubfoot@-yahoogroups ..-com Subject: Re: [nosurgery4clubfoot-] Seeking encouragement Hi . You have come to the right place for encouragement and to get questions answered. I'm sorry Caleb needs another tenotomy. My daughter, , had a second tenotomy too on her right foot. This was only because her first doctor was incompetent and we ended up getting a 2nd opinion, after discovering this great list! We too had the problem of her feet not staying in the shoes. It was a constant battle, constant screaming on her part, and us parents in constant tears. We later came to the conclusion her feet were not corrected all the way in the first place, thus causing her extreme pain in the DBB (Dennis Brown Bar) and her feet slipping out. This doesn't mean this is what's happening in your son's case. My daughter was 5 months old when she started treatment over from the beginning. I think it was harder on us parents than her. She handled the casts the second time around with no problems. Other than a lot of strange looks from strangers, because it was summer time and her legs were always exposed, we didn't have any problems. Also, because we were seeing the best doctor on the East coast (IMO), her feet were completely corrected and then had no troubles with the DBB after that. I do have to tell you though we switched to the brace which I feel is a little gentler and more comfortable on the babes feet. Where in the US are you located? HTH. and , 3-2-04, P/M's 14 hours kelors7682 " mailto:bat_-bubbles_67%-40hotmail.-com " bat_bubbles_--67 (AT) hotmail (DOT) --com> wrote: Hi. My name is and my son Caleb is 8 months old who was born with bilateral club feet--my gift to him. I too had bilateral club feet but I had to go through so many surgeries until I was 7 years old. Caleb, is actually seeing the same doctor I had when I was a child. I think that's kind of neat. Anyway, when Caleb was 6 days old, the Ponsetti treatment began with weeks of castings. He then had the tetonomy (not sure how to spell it)the minor surgery of lengthening the heel cord. He had casts one more month after that. Then at 3 months old he got his first pair of the Denison Brown orthopaedic brace shoes. They are such a pain!!! Well, he's had those for 5 months now. Wearing them day and night. And his heels are still up too high. When he stands up, they look normal. But when he's not bearing weight on them, they are up too high. So, his doctor says he needs to have a second tetonomy. But since Caleb is 8 months old, his doctor can't do it in the office. It has to be done at a hospital. And with insurance reasons, blah blah blah, his doctor can't so we're meeting a new doctor in July who apparently will do the second tetonomy. I'm just so discouraged. I just want this all to be over with. Caleb slips out of his shoes 5 times a day and wakes up in the morning with at least one off. He was sleeping through the night, but not recently. I blame the shoes, because with one on and one off, the bar twists his poor foot and he wakes up screaming. Sorry for rambling on. I'm just seeking some encouragement. I know Caleb will be able to walk and run. I don't doubt that. I;m nervous about the second tetonomy and going back into casts after he's been out of them for 5 months now. Any advice? Thanks ____________--_______________-__-______-___-_____-____-__ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 > > Hi , > > So glad you are here! This site has helped me so much over the last 2 years. There is not much I can add to what said, but I just wanted to tell you to stay positive. It seems hard right now when your baby in uncomfortable, but things will get better. It might just take a little while! > > Were Caleb's heels ever down in his shoes? Did his feet look fully corrected? I think you made the right decision getting a second opinion because it seems he was in casts for a while especially a month after the tenotomy. It isn't unheard of, but doesn't really follow the Ponseti method. Was his foot corrected before the tenotomy? All that should have needed fixing was to get rid of the stiffness. When he first went into the dbb, his heels should have went down into the shoes if you were putting them on correctly. > > Did his feet correct and look normal fairly quickly? How many casts did it take? I ask because maybe his feet are atypical. If this is the case they are harder (but not impossible) to treat, tighter, and the Ponseti- brace is highly recommended if not required for these kiddos. > > It really sounds like the foot isn't 100% corrected, but without pictures it is hard to say. Below is a great wealth of information that also has a link to qualified doctors. Since you are getting a second opinion it may as well be with a Ponseti doctor. Another thing you can do it post your location. Many parents have found doctors that are successful and correctly doing the Ponseti method but aren't on the list. > > http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/cl ubfeet/index.html > > Keep your head up! It will get better soon! > > > 11/19/04 bcf > Hi . Thanks for your advice and that link for doctors. The doctor that we will be going to is on that list!!! Yea!!!!! :) We;ll be going to see Dr. Chad Price in Orlando. Well, I believe the tenotomy did get rid of the stiffness. His feet were so stiff with casts. But once he got his brace, his feet became very flexible. It's just his heels are about 3/4 " too high (that's my estimate). I guess his doctor thought the shoes would help stretch the heel cord and the heel would come down. But that didn't happen. Especially not now. he got new shoes about 3 weeks ago. I think the brace people skipped a size or something because Caleb never slipped out of his old shoes as much as has with these. It's a constant battle to keep them on. I'll push his little foot into the shoe, heel seems flat, and pull the shoes as tight as I can. And he still manages to come out. I don't know what to do to keep him in anymore. I checked out the Ponset-mitchell brace and it looks great. Maybe we can switch to that one with the new doctor. Thanks so much again for your advice and reply. I feel sooooo much better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 > > , > > There is also a tips and tricks of the DBB document on this site in the files section. It is very helpful to new parents dealing with the DBB. It is very important to get there feet/heels all the way down in the shoes. Also making sure they are super tight! Print out the tips document, I think you will find it extrememly helpful. > > Here is a link to the site if you want to check them out: > > http://www.mdorthopaedics.com > > Let us know how it goes with the 2nd opinion. Also, one more thing I want to add is don't assume doctors know what they are doing. 's 1st doctor was highly recommended by many people. It turned out he didn't know the Poseti method very well. Thus leading us to a 2nd opinion as well. Even though they are doctors and claim they know it all, doesn't mean they do. Ask questions and use your mommy instinct. There are many persons on this site who have had bogus doctors the first time around and now have found a quality Ponseti doctor. In fact, we can help you find the best in Florida if you are interested. Offhand I forget the qualified Ponseti doc in Florida. > > HTH. > Thanks for the link for the shoes. They look so much better. And turns out the new doctor we're going to is on the certified Ponseti list. Hurrah! Well, I know I shouldn't trust so blindly the doctor we are seeing now. He did take care of me, but the old way--lots of surgeries! But he did recommend the new doctor and knowing that he is Ponseti certified gives me peace and hope. Thanks so much. I'm so glad I found this message board. I came seeking encouragement, and found it! Thank you!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 > > Hi > > > > Our son Josh is now 4 years old and has been treated since birth by a > Consultant who is on Dr Ponseti's website. Like your son our son had to > have a second tenotomy, although the Achilles tendon was not cut like the > first operation but lengthened – You should make sure that your doctor is > lengthening the tendon not cutting it as this can weaken it. Children > treated with Ponseti should be able to stand on their tiptoes however Josh > couldn't because his heals were still very high. Our Consultant was > speaking directly to Dr Ponseti regarding what course of action he should > take and this was his advice. (Josh also has lax ligaments) Josh was 2 yrs > old when he got the second operation, which was done under general > anaesthetic. It took maybe 2-3 hrs then he was in casts for approx 3 weeks. > Anyhow it was a total success. Before the op he couldn't stand on his > tiptoes and he had no arch in his feet, now that is totally corrected. He > came out of his boots at 2 years 10months (again on advice from dr P) Last > year we attended a conference where Fred Dietz examined Josh's feet and he > said they looked fantastic – he was very pleased. Josh jumps on the > trampoline everyday, runs, and does everything other kids do at 4 yrs old – > You would never know he had talipes. > > > > As for Caleb slipping out of the boots, we had strips of sponge stuck at the > top of each boot (on the inside) this was supplied with the boots we used 4 > years ago, although I know the more recent ones have it built in – It's hard > to describe but it wasn't hard or soft but it made it hard for Josh to > wriggle out of his boots. I do remember thinking how sore it must have been > anytime one foot came out, although this didn't happen too often - you > should also put socks on him that have the rubber grips on the sole – I > think you can get these in Gap…….. > > Anyhow – don't be discouraged, it will all work out fine and just be > thankful Caleb isn't walking – he should still be happy to wriggle about or > be pushed in the pram. Josh was such a weight to carry about and he was > speaking so he kept saying " off " (about the casts) > > Anyhow, hope all goes well for you both. > > > > Best wishes > > > > a-Anne > Hi a-Anne, Wow, it's good to know that even your son having the second tenotomy at 2, he pulled through amazingly. I kept thinking Caleb at 8 months was so old to have another tenotomy done. Thank you for your reply. Hm, I like the sponge idea. Wonder what I could stuff in there to keep those little feet into place? I've tried the gripper socks and he still comes out. Maybe I'll try the ones at the Gap. Thank you so much for your encouraging reply! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 I apologize if someone has already mentioned this, but have you checked the bar length? was slipping out constantly when his feet were too close together. Even now when we got to the orthotist they insist on moving in in some (they believe it should be shoulder width bolt to bolt, we put it shoulder width heel to heel). We've gotten to a point we don't even argue we just adjust it when we get home. Check the width and maybe that will help you keep the shoes on him better. Kaci (mom to matthew, 12/17/05, bcf, FAB 18/7) > > > Hi . Thanks for your advice and that link for doctors. The > doctor that we will be going to is on that list!!! > Yea!!!!! :) We;ll be going to see Dr. Chad Price in Orlando. > Well, I believe the tenotomy did get rid of the stiffness. His feet > were so stiff with casts. But once he got his brace, his feet > became very flexible. It's just his heels are about 3/4 " too high > (that's my estimate). I guess his doctor thought the shoes would > help stretch the heel cord and the heel would come down. But that > didn't happen. Especially not now. he got new shoes about 3 weeks > ago. I think the brace people skipped a size or something because > Caleb never slipped out of his old shoes as much as has with these. > It's a constant battle to keep them on. I'll push his little foot > into the shoe, heel seems flat, and pull the shoes as tight as I > can. And he still manages to come out. I don't know what to do to > keep him in anymore. I checked out the Ponset-mitchell brace and it > looks great. Maybe we can switch to that one with the new doctor. > Thanks so much again for your advice and reply. I feel sooooo much > better! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 , While we weren't using the lace-ups (we did try those for a month, that's another story), my son kicked his good foot out of his Dobbs AFO brace every night for almost a year. It was a very long nightmare. We very recently switched to the sandals, and I am thrilled to say, Connor (15 months) is now sleeping through the night AND doesn't kick them off at all. He truly seems comfortable! It is a miracle to me and my only regret is that I didn't know about the 's sooner to try them when Connor was younger. Your challenges may be different, but it's worth investigating because in the last two weeks, we have actually had some peaceful sleep. Good luck, Kerrigan kelors7682 wrote: Hi. My name is and my son Caleb is 8 months old who was born with bilateral club feet--my gift to him. I too had bilateral club feet but I had to go through so many surgeries until I was 7 years old. Caleb, is actually seeing the same doctor I had when I was a child. I think that's kind of neat. Anyway, when Caleb was 6 days old, the Ponsetti treatment began with weeks of castings. He then had the tetonomy (not sure how to spell it)the minor surgery of lengthening the heel cord. He had casts one more month after that. Then at 3 months old he got his first pair of the Denison Brown orthopaedic brace shoes. They are such a pain!!! Well, he's had those for 5 months now. Wearing them day and night. And his heels are still up too high. When he stands up, they look normal. But when he's not bearing weight on them, they are up too high. So, his doctor says he needs to have a second tetonomy. But since Caleb is 8 months old, his doctor can't do it in the office. It has to be done at a hospital. And with insurance reasons, blah blah blah, his doctor can't so we're meeting a new doctor in July who apparently will do the second tetonomy. I'm just so discouraged. I just want this all to be over with. Caleb slips out of his shoes 5 times a day and wakes up in the morning with at least one off. He was sleeping through the night, but not recently. I blame the shoes, because with one on and one off, the bar twists his poor foot and he wakes up screaming. Sorry for rambling on. I'm just seeking some encouragement. I know Caleb will be able to walk and run. I don't doubt that. I;m nervous about the second tetonomy and going back into casts after he's been out of them for 5 months now. Any advice? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Coming in a little late on this discussion but I just wanted to clarify something... The tenotomy, which does actually cut the achilles tendon is the final step in the correction process per the Ponseti method. The open incision lengthening procedure is a more invasive method of lengthening the tendon and is not " normally " necessary nor a part of the Ponseti method. Anytime the foot is opened up and the tendons surgically altered in this manner it allows for the potential of more scar tissue than the percutaneous tenotomy. Not saying that what Josh's doctor did was wrong, just clarifying for those who may be confused between the two procedures. I am unaware of any studies that show that a second percutaneous tenotomy will weaken the tendon and I believe there are several children here who have had one (a second one) with no ill effects. > Hi. My name is and my son Caleb is 8 months old who was born > with bilateral club feet--my gift to him. I too had bilateral club > feet but I had to go through so many surgeries until I was 7 years > old. Caleb, is actually seeing the same doctor I had when I was a > child. I think that's kind of neat. Anyway, when Caleb was 6 days > old, the Ponsetti treatment began with weeks of castings. He then > had the tetonomy (not sure how to spell it)the minor surgery of > lengthening the heel cord. He had casts one more month after that. > Then at 3 months old he got his first pair of the Denison Brown > orthopaedic brace shoes. They are such a pain!!! Well, he's had > those for 5 months now. Wearing them day and night. And his heels > are still up too high. When he stands up, they look normal. But > when he's not bearing weight on them, they are up too high. So, his > doctor says he needs to have a second tetonomy. But since Caleb is > 8 months old, his doctor can't do it in the office. It has to be > done at a hospital. And with insurance reasons, blah blah blah, his > doctor can't so we're meeting a new doctor in July who apparently > will do the second tetonomy. I'm just so discouraged. I just want > this all to be over with. Caleb slips out of his shoes 5 times a > day and wakes up in the morning with at least one off. He was > sleeping through the night, but not recently. I blame the shoes, > because with one on and one off, the bar twists his poor foot and he > wakes up screaming. Sorry for rambling on. I'm just seeking some > encouragement. I know Caleb will be able to walk and run. I don't > doubt that. I;m nervous about the second tetonomy and going back > into casts after he's been out of them for 5 months now. Any > advice? Thanks > > ____________--_______________-__-______-___-_____-____-__ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 I believe I did say that I wasn't questioning whether or not your doctor did anything wrong. Just making sure that newbies reading understand that the percutaneous tenotomy is what is traditionally a part of the P method. It needs to be understood that the open incision lengthening procedure is what is to be avoided for a first tenotomy. Thanks, > > Hi. My name is and my son Caleb is 8 months old who was born > > with bilateral club feet--my gift to him. I too had bilateral club > > feet but I had to go through so many surgeries until I was 7 years > > old. Caleb, is actually seeing the same doctor I had when I was a > > child. I think that's kind of neat. Anyway, when Caleb was 6 days > > old, the Ponsetti treatment began with weeks of castings. He then > > had the tetonomy (not sure how to spell it)the minor surgery of > > lengthening the heel cord. He had casts one more month after that. > > Then at 3 months old he got his first pair of the Denison Brown > > orthopaedic brace shoes. They are such a pain!!! Well, he's had > > those for 5 months now. Wearing them day and night. And his heels > > are still up too high. When he stands up, they look normal. But > > when he's not bearing weight on them, they are up too high. So, his > > doctor says he needs to have a second tetonomy. But since Caleb is > > 8 months old, his doctor can't do it in the office. It has to be > > done at a hospital. And with insurance reasons, blah blah blah, his > > doctor can't so we're meeting a new doctor in July who apparently > > will do the second tetonomy. I'm just so discouraged. I just want > > this all to be over with. Caleb slips out of his shoes 5 times a > > day and wakes up in the morning with at least one off. He was > > sleeping through the night, but not recently. I blame the shoes, > > because with one on and one off, the bar twists his poor foot and he > > wakes up screaming. Sorry for rambling on. I'm just seeking some > > encouragement. I know Caleb will be able to walk and run. I don't > > doubt that. I;m nervous about the second tetonomy and going back > > into casts after he's been out of them for 5 months now. Any > > advice? Thanks > > > > ____________---________-_____-__-__-___-___-_______-____--__ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 I think you are exactly right , and it may vary from child to child as well depending on multiple variables. I would never dream to question Dr. Ponseti's advice. : ) > > > Hi. My name is and my son Caleb is 8 months > > old who was born > > > with bilateral club feet--my gift to him. I too > > had bilateral club > > > feet but I had to go through so many surgeries > > until I was 7 years > > > old. Caleb, is actually seeing the same doctor I > > had when I was a > > > child. I think that's kind of neat. Anyway, when > > Caleb was 6 days > > > old, the Ponsetti treatment began with weeks of > > castings. He then > > > had the tetonomy (not sure how to spell it)the > > minor surgery of > > > lengthening the heel cord. He had casts one more > > month after that. > > > Then at 3 months old he got his first pair of the > > Denison Brown > > > orthopaedic brace shoes. They are such a pain!!! > > Well, he's had > > > those for 5 months now. Wearing them day and > > night. And his heels > > > are still up too high. When he stands up, they > > look normal. But > > > when he's not bearing weight on them, they are up > > too high. So, his > > > doctor says he needs to have a second tetonomy. > > But since Caleb is > > > 8 months old, his doctor can't do it in the > > office. It has to be > > > done at a hospital. And with insurance reasons, > > blah blah blah, his > > > doctor can't so we're meeting a new doctor in July > > who apparently > > > will do the second tetonomy. I'm just so > > discouraged. I just want > > > this all to be over with. Caleb slips out of his > > shoes 5 times a > > > day and wakes up in the morning with at least one > > off. He was > > > sleeping through the night, but not recently. I > > blame the shoes, > > > because with one on and one off, the bar twists > > his poor foot and he > > > wakes up screaming. Sorry for rambling on. I'm > > just seeking some > > > encouragement. I know Caleb will be able to walk > > and run. I don't > > > doubt that. I;m nervous about the second tetonomy > > and going back > > > into casts after he's been out of them for 5 > > months now. Any > > > advice? Thanks > > > > > > > > > ____________---________-_____-__-__-___-___-_______-____--__ > > > Quote Link to comment Share on other sites More sharing options...
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