Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi there, I was referred to this group by another (clubfootcanada) in order to obtain some more information about the Pnseti method of treating clubfoot. Hello All, my name is and my son was born on June 19th , 2005 with bilateral clubfoot (idiopathic). We were not aware of the condition ahead of his birth, so it was a surprise when he came out! I was not freaked out, or worried as I knew right away what it was and that it was treatable, although I didn't know how. We consulted with Children's Hospital when he was two days old and were told his were " moderate to severe " , which according to our Orthopedic Surgeon was unusual for idiopathic. We were also told his treatment would be as follows: 8 weeks of casts (once a week) Botox injection in each Achilles tendon Boots and bar (24/7 until he's able to stand and then night time until he is 4, partnered with special Nu Balance running shoes) We left with his first set of casts on. He is now almost four months old, has had 12 casts and two Botox injections in each calf and just last week was put in the boots and bar. From the beginning he has had a very difficult time with the health of his skin under the casts. His skin has been raw and weeping with very dry and large patches of eczema. He's gained the reputation of being the " purple screamer " at the hospital because he gets so worked up when they are treating him. He looks at me with pain in his eyes, tears streaming down his face with an expression that says " do something! " Six weeks ago, we had a week long break from the casts to heal his skin, and even though this was going to set us back, we welcomed it. I realized what I had missed by casting him at two days old. We had baths together, I kissed his feet obsessively and we played with his toes. Four weeks ago, we had a trial run with the boots and bar because the doctor was concerned about his skin as it was bad right away again. I struggled for two days with them and he kicked them off about a jillion times, until I took him back to the hospital and had him re-casted. The following appointment he had " two week " casts put on and when I took them off last week I was appalled. I had noticed that they were getting smelly, but the backs of both knees and the tops of both feet were raw, weeping, scaly and looked like they had been burned. I could not believe the smell - it smelled like death. I was reassured by the doctor that it was okay and we are trying the boots again. As relieved as I was to make the switch, initially I was not finding them any less painful in terms of him screaming his head off when I put them on. One of his heels still isn't really dropped down enough for the boot and I find that even though I seem to get them on okay, his feet slip below the marks they made on them for me. It has been frustrating to say the least. He was very upset the next morning, crying a lot and that is unusual behaviour for him as he is generally sunny most of the time. There has been improvement in that area, but he still kicks them off, his feet slip inside of them and he has devised a way to kick that loosens the nut on one of the boots! Yesterday I went for a follow up and watched as the doctor reefed his bad (left) foot up to get the number reading she wanted. He was screaming and I was trying to keep it together. In addition to that, when I mentioned that I co-sleep with him the doctor started lecturing me about sleeping in the same bed with him because of the hardware maybe not allowing him to move under blankets, blah blah blah. I found myself having to justify my lifestyle to her and I was very irked. I didn't bother to tell her that when he does sleep in his crib, he tummy sleeps as I probably would have been criticized for that too! I feel very often that she talks down to me and on the rare occasions that my husband accompanies me to the appointments, she will talk directly to him and over me. This is perhaps because he has a degree and I don't. It has been recommended to me by others in the Clubfoot Canada group that I go and see the local doctor that practices the Ponseti Method. My biggest obstacle will be my husband in this endeavour because he feels the Botox is cutting edge and is happy with the way things are going (of course he is, he's not there holding down his son while he screams every week!) I approached him last night about this issue and he agreed that I could look into it, but what he wants to see is documentation on this method - and seriously, the more " medical journal " it is, the better as he understands numbers and statistics better than testimonials. I presented to him that since I am the one who is largely dealing with this issue why would it matter which doctor I took Hayden to if it meant a more gentle treatment for him? I haven't fully convinced him, but I am determined to stand my ground on this. Please, if anyone can help me, either by directing me to medical articles, websites or your own stories on this group, I would really appreciate it! I am feeling very lost and alone, relatively unsupported (emotionally) by my husband and am just looking for some " been there " testimonials. Please feel free to email me privately if you like, because misery sure loves company. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi there, I was referred to this group by another (clubfootcanada) in order to obtain some more information about the Pnseti method of treating clubfoot. Hello All, my name is and my son was born on June 19th , 2005 with bilateral clubfoot (idiopathic). We were not aware of the condition ahead of his birth, so it was a surprise when he came out! I was not freaked out, or worried as I knew right away what it was and that it was treatable, although I didn't know how. We consulted with Children's Hospital when he was two days old and were told his were " moderate to severe " , which according to our Orthopedic Surgeon was unusual for idiopathic. We were also told his treatment would be as follows: 8 weeks of casts (once a week) Botox injection in each Achilles tendon Boots and bar (24/7 until he's able to stand and then night time until he is 4, partnered with special Nu Balance running shoes) We left with his first set of casts on. He is now almost four months old, has had 12 casts and two Botox injections in each calf and just last week was put in the boots and bar. From the beginning he has had a very difficult time with the health of his skin under the casts. His skin has been raw and weeping with very dry and large patches of eczema. He's gained the reputation of being the " purple screamer " at the hospital because he gets so worked up when they are treating him. He looks at me with pain in his eyes, tears streaming down his face with an expression that says " do something! " Six weeks ago, we had a week long break from the casts to heal his skin, and even though this was going to set us back, we welcomed it. I realized what I had missed by casting him at two days old. We had baths together, I kissed his feet obsessively and we played with his toes. Four weeks ago, we had a trial run with the boots and bar because the doctor was concerned about his skin as it was bad right away again. I struggled for two days with them and he kicked them off about a jillion times, until I took him back to the hospital and had him re-casted. The following appointment he had " two week " casts put on and when I took them off last week I was appalled. I had noticed that they were getting smelly, but the backs of both knees and the tops of both feet were raw, weeping, scaly and looked like they had been burned. I could not believe the smell - it smelled like death. I was reassured by the doctor that it was okay and we are trying the boots again. As relieved as I was to make the switch, initially I was not finding them any less painful in terms of him screaming his head off when I put them on. One of his heels still isn't really dropped down enough for the boot and I find that even though I seem to get them on okay, his feet slip below the marks they made on them for me. It has been frustrating to say the least. He was very upset the next morning, crying a lot and that is unusual behaviour for him as he is generally sunny most of the time. There has been improvement in that area, but he still kicks them off, his feet slip inside of them and he has devised a way to kick that loosens the nut on one of the boots! Yesterday I went for a follow up and watched as the doctor reefed his bad (left) foot up to get the number reading she wanted. He was screaming and I was trying to keep it together. In addition to that, when I mentioned that I co-sleep with him the doctor started lecturing me about sleeping in the same bed with him because of the hardware maybe not allowing him to move under blankets, blah blah blah. I found myself having to justify my lifestyle to her and I was very irked. I didn't bother to tell her that when he does sleep in his crib, he tummy sleeps as I probably would have been criticized for that too! I feel very often that she talks down to me and on the rare occasions that my husband accompanies me to the appointments, she will talk directly to him and over me. This is perhaps because he has a degree and I don't. It has been recommended to me by others in the Clubfoot Canada group that I go and see the local doctor that practices the Ponseti Method. My biggest obstacle will be my husband in this endeavour because he feels the Botox is cutting edge and is happy with the way things are going (of course he is, he's not there holding down his son while he screams every week!) I approached him last night about this issue and he agreed that I could look into it, but what he wants to see is documentation on this method - and seriously, the more " medical journal " it is, the better as he understands numbers and statistics better than testimonials. I presented to him that since I am the one who is largely dealing with this issue why would it matter which doctor I took Hayden to if it meant a more gentle treatment for him? I haven't fully convinced him, but I am determined to stand my ground on this. Please, if anyone can help me, either by directing me to medical articles, websites or your own stories on this group, I would really appreciate it! I am feeling very lost and alone, relatively unsupported (emotionally) by my husband and am just looking for some " been there " testimonials. Please feel free to email me privately if you like, because misery sure loves company. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 , Your story almost brought me to tears. You are in the right place. There are many folks here very well versed in the Ponseti method and who have traveled to Iowa to meet him and have him treat their children. My son is 2 and I only discovered this group a month or so ago. I wish I had found them when was just a few weeks old and I was struggling with the process. Let me tell you what the Ponseti method did for us. was born with one " severe " foot and one foot that was borderline. When he was 2 days old we visited a doctor who practices the Ponseti method. had casts on both legs for 6-8 weeks, changing casts each week, and then had both tendons snipped. He had another cast for 3 weeks and then 24-7 of shoes with the bar for 3 months. Since then he's slept for 12 hours with the bar/shoes. His feet are beautiful and we are hopeful that he will continue to progress well. It was very, very difficult to get through the casting each week. cried each time he was recasted. And in the first month or so getting the shoes to stay on was too awful for words. But he never, never, had any skin problems--and I have never heard of botox as part of a treatment. I am not a doctor, not at all an expert, BUT, what you are describing sounds wrong. Just wrong. Perhaps there is someone out there who has had the same experience you've described and better understands what is going on with Hayden. My advice to you is to contact Dr. Ponseti asap. He responds directly to emails (and probably phone calls too). I don't have his contact info. offhand, but I'll bet as I am writing this, others with it are writing too. If I don't see it in an hour or so, I'll find it for you. Hang in there. You have come to the right place. Beth wrote: Hi there, I was referred to this group by another (clubfootcanada) in order to obtain some more information about the Pnseti method of treating clubfoot. Hello All, my name is and my son was born on June 19th , 2005 with bilateral clubfoot (idiopathic). We were not aware of the condition ahead of his birth, so it was a surprise when he came out! I was not freaked out, or worried as I knew right away what it was and that it was treatable, although I didn't know how. We consulted with Children's Hospital when he was two days old and were told his were " moderate to severe " , which according to our Orthopedic Surgeon was unusual for idiopathic. We were also told his treatment would be as follows: 8 weeks of casts (once a week) Botox injection in each Achilles tendon Boots and bar (24/7 until he's able to stand and then night time until he is 4, partnered with special Nu Balance running shoes) We left with his first set of casts on. He is now almost four months old, has had 12 casts and two Botox injections in each calf and just last week was put in the boots and bar. From the beginning he has had a very difficult time with the health of his skin under the casts. His skin has been raw and weeping with very dry and large patches of eczema. He's gained the reputation of being the " purple screamer " at the hospital because he gets so worked up when they are treating him. He looks at me with pain in his eyes, tears streaming down his face with an expression that says " do something! " Six weeks ago, we had a week long break from the casts to heal his skin, and even though this was going to set us back, we welcomed it. I realized what I had missed by casting him at two days old. We had baths together, I kissed his feet obsessively and we played with his toes. Four weeks ago, we had a trial run with the boots and bar because the doctor was concerned about his skin as it was bad right away again. I struggled for two days with them and he kicked them off about a jillion times, until I took him back to the hospital and had him re-casted. The following appointment he had " two week " casts put on and when I took them off last week I was appalled. I had noticed that they were getting smelly, but the backs of both knees and the tops of both feet were raw, weeping, scaly and looked like they had been burned. I could not believe the smell - it smelled like death. I was reassured by the doctor that it was okay and we are trying the boots again. As relieved as I was to make the switch, initially I was not finding them any less painful in terms of him screaming his head off when I put them on. One of his heels still isn't really dropped down enough for the boot and I find that even though I seem to get them on okay, his feet slip below the marks they made on them for me. It has been frustrating to say the least. He was very upset the next morning, crying a lot and that is unusual behaviour for him as he is generally sunny most of the time. There has been improvement in that area, but he still kicks them off, his feet slip inside of them and he has devised a way to kick that loosens the nut on one of the boots! Yesterday I went for a follow up and watched as the doctor reefed his bad (left) foot up to get the number reading she wanted. He was screaming and I was trying to keep it together. In addition to that, when I mentioned that I co-sleep with him the doctor started lecturing me about sleeping in the same bed with him because of the hardware maybe not allowing him to move under blankets, blah blah blah. I found myself having to justify my lifestyle to her and I was very irked. I didn't bother to tell her that when he does sleep in his crib, he tummy sleeps as I probably would have been criticized for that too! I feel very often that she talks down to me and on the rare occasions that my husband accompanies me to the appointments, she will talk directly to him and over me. This is perhaps because he has a degree and I don't. It has been recommended to me by others in the Clubfoot Canada group that I go and see the local doctor that practices the Ponseti Method. My biggest obstacle will be my husband in this endeavour because he feels the Botox is cutting edge and is happy with the way things are going (of course he is, he's not there holding down his son while he screams every week!) I approached him last night about this issue and he agreed that I could look into it, but what he wants to see is documentation on this method - and seriously, the more " medical journal " it is, the better as he understands numbers and statistics better than testimonials. I presented to him that since I am the one who is largely dealing with this issue why would it matter which doctor I took Hayden to if it meant a more gentle treatment for him? I haven't fully convinced him, but I am determined to stand my ground on this. Please, if anyone can help me, either by directing me to medical articles, websites or your own stories on this group, I would really appreciate it! I am feeling very lost and alone, relatively unsupported (emotionally) by my husband and am just looking for some " been there " testimonials. Please feel free to email me privately if you like, because misery sure loves company. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 , Your story almost brought me to tears. You are in the right place. There are many folks here very well versed in the Ponseti method and who have traveled to Iowa to meet him and have him treat their children. My son is 2 and I only discovered this group a month or so ago. I wish I had found them when was just a few weeks old and I was struggling with the process. Let me tell you what the Ponseti method did for us. was born with one " severe " foot and one foot that was borderline. When he was 2 days old we visited a doctor who practices the Ponseti method. had casts on both legs for 6-8 weeks, changing casts each week, and then had both tendons snipped. He had another cast for 3 weeks and then 24-7 of shoes with the bar for 3 months. Since then he's slept for 12 hours with the bar/shoes. His feet are beautiful and we are hopeful that he will continue to progress well. It was very, very difficult to get through the casting each week. cried each time he was recasted. And in the first month or so getting the shoes to stay on was too awful for words. But he never, never, had any skin problems--and I have never heard of botox as part of a treatment. I am not a doctor, not at all an expert, BUT, what you are describing sounds wrong. Just wrong. Perhaps there is someone out there who has had the same experience you've described and better understands what is going on with Hayden. My advice to you is to contact Dr. Ponseti asap. He responds directly to emails (and probably phone calls too). I don't have his contact info. offhand, but I'll bet as I am writing this, others with it are writing too. If I don't see it in an hour or so, I'll find it for you. Hang in there. You have come to the right place. Beth wrote: Hi there, I was referred to this group by another (clubfootcanada) in order to obtain some more information about the Pnseti method of treating clubfoot. Hello All, my name is and my son was born on June 19th , 2005 with bilateral clubfoot (idiopathic). We were not aware of the condition ahead of his birth, so it was a surprise when he came out! I was not freaked out, or worried as I knew right away what it was and that it was treatable, although I didn't know how. We consulted with Children's Hospital when he was two days old and were told his were " moderate to severe " , which according to our Orthopedic Surgeon was unusual for idiopathic. We were also told his treatment would be as follows: 8 weeks of casts (once a week) Botox injection in each Achilles tendon Boots and bar (24/7 until he's able to stand and then night time until he is 4, partnered with special Nu Balance running shoes) We left with his first set of casts on. He is now almost four months old, has had 12 casts and two Botox injections in each calf and just last week was put in the boots and bar. From the beginning he has had a very difficult time with the health of his skin under the casts. His skin has been raw and weeping with very dry and large patches of eczema. He's gained the reputation of being the " purple screamer " at the hospital because he gets so worked up when they are treating him. He looks at me with pain in his eyes, tears streaming down his face with an expression that says " do something! " Six weeks ago, we had a week long break from the casts to heal his skin, and even though this was going to set us back, we welcomed it. I realized what I had missed by casting him at two days old. We had baths together, I kissed his feet obsessively and we played with his toes. Four weeks ago, we had a trial run with the boots and bar because the doctor was concerned about his skin as it was bad right away again. I struggled for two days with them and he kicked them off about a jillion times, until I took him back to the hospital and had him re-casted. The following appointment he had " two week " casts put on and when I took them off last week I was appalled. I had noticed that they were getting smelly, but the backs of both knees and the tops of both feet were raw, weeping, scaly and looked like they had been burned. I could not believe the smell - it smelled like death. I was reassured by the doctor that it was okay and we are trying the boots again. As relieved as I was to make the switch, initially I was not finding them any less painful in terms of him screaming his head off when I put them on. One of his heels still isn't really dropped down enough for the boot and I find that even though I seem to get them on okay, his feet slip below the marks they made on them for me. It has been frustrating to say the least. He was very upset the next morning, crying a lot and that is unusual behaviour for him as he is generally sunny most of the time. There has been improvement in that area, but he still kicks them off, his feet slip inside of them and he has devised a way to kick that loosens the nut on one of the boots! Yesterday I went for a follow up and watched as the doctor reefed his bad (left) foot up to get the number reading she wanted. He was screaming and I was trying to keep it together. In addition to that, when I mentioned that I co-sleep with him the doctor started lecturing me about sleeping in the same bed with him because of the hardware maybe not allowing him to move under blankets, blah blah blah. I found myself having to justify my lifestyle to her and I was very irked. I didn't bother to tell her that when he does sleep in his crib, he tummy sleeps as I probably would have been criticized for that too! I feel very often that she talks down to me and on the rare occasions that my husband accompanies me to the appointments, she will talk directly to him and over me. This is perhaps because he has a degree and I don't. It has been recommended to me by others in the Clubfoot Canada group that I go and see the local doctor that practices the Ponseti Method. My biggest obstacle will be my husband in this endeavour because he feels the Botox is cutting edge and is happy with the way things are going (of course he is, he's not there holding down his son while he screams every week!) I approached him last night about this issue and he agreed that I could look into it, but what he wants to see is documentation on this method - and seriously, the more " medical journal " it is, the better as he understands numbers and statistics better than testimonials. I presented to him that since I am the one who is largely dealing with this issue why would it matter which doctor I took Hayden to if it meant a more gentle treatment for him? I haven't fully convinced him, but I am determined to stand my ground on this. Please, if anyone can help me, either by directing me to medical articles, websites or your own stories on this group, I would really appreciate it! I am feeling very lost and alone, relatively unsupported (emotionally) by my husband and am just looking for some " been there " testimonials. Please feel free to email me privately if you like, because misery sure loves company. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 ignacio-ponseti@... He will reply back to you. Beth Mintz wrote: , Your story almost brought me to tears. You are in the right place. There are many folks here very well versed in the Ponseti method and who have traveled to Iowa to meet him and have him treat their children. My son is 2 and I only discovered this group a month or so ago. I wish I had found them when was just a few weeks old and I was struggling with the process. Let me tell you what the Ponseti method did for us. was born with one " severe " foot and one foot that was borderline. When he was 2 days old we visited a doctor who practices the Ponseti method. had casts on both legs for 6-8 weeks, changing casts each week, and then had both tendons snipped. He had another cast for 3 weeks and then 24-7 of shoes with the bar for 3 months. Since then he's slept for 12 hours with the bar/shoes. His feet are beautiful and we are hopeful that he will continue to progress well. It was very, very difficult to get through the casting each week. cried each time he was recasted. And in the first month or so getting the shoes to stay on was too awful for words. But he never, never, had any skin problems--and I have never heard of botox as part of a treatment. I am not a doctor, not at all an expert, BUT, what you are describing sounds wrong. Just wrong. Perhaps there is someone out there who has had the same experience you've described and better understands what is going on with Hayden. My advice to you is to contact Dr. Ponseti asap. He responds directly to emails (and probably phone calls too). I don't have his contact info. offhand, but I'll bet as I am writing this, others with it are writing too. If I don't see it in an hour or so, I'll find it for you. Hang in there. You have come to the right place. Beth wrote: Hi there, I was referred to this group by another (clubfootcanada) in order to obtain some more information about the Pnseti method of treating clubfoot. Hello All, my name is and my son was born on June 19th , 2005 with bilateral clubfoot (idiopathic). We were not aware of the condition ahead of his birth, so it was a surprise when he came out! I was not freaked out, or worried as I knew right away what it was and that it was treatable, although I didn't know how. We consulted with Children's Hospital when he was two days old and were told his were " moderate to severe " , which according to our Orthopedic Surgeon was unusual for idiopathic. We were also told his treatment would be as follows: 8 weeks of casts (once a week) Botox injection in each Achilles tendon Boots and bar (24/7 until he's able to stand and then night time until he is 4, partnered with special Nu Balance running shoes) We left with his first set of casts on. He is now almost four months old, has had 12 casts and two Botox injections in each calf and just last week was put in the boots and bar. From the beginning he has had a very difficult time with the health of his skin under the casts. His skin has been raw and weeping with very dry and large patches of eczema. He's gained the reputation of being the " purple screamer " at the hospital because he gets so worked up when they are treating him. He looks at me with pain in his eyes, tears streaming down his face with an expression that says " do something! " Six weeks ago, we had a week long break from the casts to heal his skin, and even though this was going to set us back, we welcomed it. I realized what I had missed by casting him at two days old. We had baths together, I kissed his feet obsessively and we played with his toes. Four weeks ago, we had a trial run with the boots and bar because the doctor was concerned about his skin as it was bad right away again. I struggled for two days with them and he kicked them off about a jillion times, until I took him back to the hospital and had him re-casted. The following appointment he had " two week " casts put on and when I took them off last week I was appalled. I had noticed that they were getting smelly, but the backs of both knees and the tops of both feet were raw, weeping, scaly and looked like they had been burned. I could not believe the smell - it smelled like death. I was reassured by the doctor that it was okay and we are trying the boots again. As relieved as I was to make the switch, initially I was not finding them any less painful in terms of him screaming his head off when I put them on. One of his heels still isn't really dropped down enough for the boot and I find that even though I seem to get them on okay, his feet slip below the marks they made on them for me. It has been frustrating to say the least. He was very upset the next morning, crying a lot and that is unusual behaviour for him as he is generally sunny most of the time. There has been improvement in that area, but he still kicks them off, his feet slip inside of them and he has devised a way to kick that loosens the nut on one of the boots! Yesterday I went for a follow up and watched as the doctor reefed his bad (left) foot up to get the number reading she wanted. He was screaming and I was trying to keep it together. In addition to that, when I mentioned that I co-sleep with him the doctor started lecturing me about sleeping in the same bed with him because of the hardware maybe not allowing him to move under blankets, blah blah blah. I found myself having to justify my lifestyle to her and I was very irked. I didn't bother to tell her that when he does sleep in his crib, he tummy sleeps as I probably would have been criticized for that too! I feel very often that she talks down to me and on the rare occasions that my husband accompanies me to the appointments, she will talk directly to him and over me. This is perhaps because he has a degree and I don't. It has been recommended to me by others in the Clubfoot Canada group that I go and see the local doctor that practices the Ponseti Method. My biggest obstacle will be my husband in this endeavour because he feels the Botox is cutting edge and is happy with the way things are going (of course he is, he's not there holding down his son while he screams every week!) I approached him last night about this issue and he agreed that I could look into it, but what he wants to see is documentation on this method - and seriously, the more " medical journal " it is, the better as he understands numbers and statistics better than testimonials. I presented to him that since I am the one who is largely dealing with this issue why would it matter which doctor I took Hayden to if it meant a more gentle treatment for him? I haven't fully convinced him, but I am determined to stand my ground on this. Please, if anyone can help me, either by directing me to medical articles, websites or your own stories on this group, I would really appreciate it! I am feeling very lost and alone, relatively unsupported (emotionally) by my husband and am just looking for some " been there " testimonials. Please feel free to email me privately if you like, because misery sure loves company. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 ignacio-ponseti@... He will reply back to you. Beth Mintz wrote: , Your story almost brought me to tears. You are in the right place. There are many folks here very well versed in the Ponseti method and who have traveled to Iowa to meet him and have him treat their children. My son is 2 and I only discovered this group a month or so ago. I wish I had found them when was just a few weeks old and I was struggling with the process. Let me tell you what the Ponseti method did for us. was born with one " severe " foot and one foot that was borderline. When he was 2 days old we visited a doctor who practices the Ponseti method. had casts on both legs for 6-8 weeks, changing casts each week, and then had both tendons snipped. He had another cast for 3 weeks and then 24-7 of shoes with the bar for 3 months. Since then he's slept for 12 hours with the bar/shoes. His feet are beautiful and we are hopeful that he will continue to progress well. It was very, very difficult to get through the casting each week. cried each time he was recasted. And in the first month or so getting the shoes to stay on was too awful for words. But he never, never, had any skin problems--and I have never heard of botox as part of a treatment. I am not a doctor, not at all an expert, BUT, what you are describing sounds wrong. Just wrong. Perhaps there is someone out there who has had the same experience you've described and better understands what is going on with Hayden. My advice to you is to contact Dr. Ponseti asap. He responds directly to emails (and probably phone calls too). I don't have his contact info. offhand, but I'll bet as I am writing this, others with it are writing too. If I don't see it in an hour or so, I'll find it for you. Hang in there. You have come to the right place. Beth wrote: Hi there, I was referred to this group by another (clubfootcanada) in order to obtain some more information about the Pnseti method of treating clubfoot. Hello All, my name is and my son was born on June 19th , 2005 with bilateral clubfoot (idiopathic). We were not aware of the condition ahead of his birth, so it was a surprise when he came out! I was not freaked out, or worried as I knew right away what it was and that it was treatable, although I didn't know how. We consulted with Children's Hospital when he was two days old and were told his were " moderate to severe " , which according to our Orthopedic Surgeon was unusual for idiopathic. We were also told his treatment would be as follows: 8 weeks of casts (once a week) Botox injection in each Achilles tendon Boots and bar (24/7 until he's able to stand and then night time until he is 4, partnered with special Nu Balance running shoes) We left with his first set of casts on. He is now almost four months old, has had 12 casts and two Botox injections in each calf and just last week was put in the boots and bar. From the beginning he has had a very difficult time with the health of his skin under the casts. His skin has been raw and weeping with very dry and large patches of eczema. He's gained the reputation of being the " purple screamer " at the hospital because he gets so worked up when they are treating him. He looks at me with pain in his eyes, tears streaming down his face with an expression that says " do something! " Six weeks ago, we had a week long break from the casts to heal his skin, and even though this was going to set us back, we welcomed it. I realized what I had missed by casting him at two days old. We had baths together, I kissed his feet obsessively and we played with his toes. Four weeks ago, we had a trial run with the boots and bar because the doctor was concerned about his skin as it was bad right away again. I struggled for two days with them and he kicked them off about a jillion times, until I took him back to the hospital and had him re-casted. The following appointment he had " two week " casts put on and when I took them off last week I was appalled. I had noticed that they were getting smelly, but the backs of both knees and the tops of both feet were raw, weeping, scaly and looked like they had been burned. I could not believe the smell - it smelled like death. I was reassured by the doctor that it was okay and we are trying the boots again. As relieved as I was to make the switch, initially I was not finding them any less painful in terms of him screaming his head off when I put them on. One of his heels still isn't really dropped down enough for the boot and I find that even though I seem to get them on okay, his feet slip below the marks they made on them for me. It has been frustrating to say the least. He was very upset the next morning, crying a lot and that is unusual behaviour for him as he is generally sunny most of the time. There has been improvement in that area, but he still kicks them off, his feet slip inside of them and he has devised a way to kick that loosens the nut on one of the boots! Yesterday I went for a follow up and watched as the doctor reefed his bad (left) foot up to get the number reading she wanted. He was screaming and I was trying to keep it together. In addition to that, when I mentioned that I co-sleep with him the doctor started lecturing me about sleeping in the same bed with him because of the hardware maybe not allowing him to move under blankets, blah blah blah. I found myself having to justify my lifestyle to her and I was very irked. I didn't bother to tell her that when he does sleep in his crib, he tummy sleeps as I probably would have been criticized for that too! I feel very often that she talks down to me and on the rare occasions that my husband accompanies me to the appointments, she will talk directly to him and over me. This is perhaps because he has a degree and I don't. It has been recommended to me by others in the Clubfoot Canada group that I go and see the local doctor that practices the Ponseti Method. My biggest obstacle will be my husband in this endeavour because he feels the Botox is cutting edge and is happy with the way things are going (of course he is, he's not there holding down his son while he screams every week!) I approached him last night about this issue and he agreed that I could look into it, but what he wants to see is documentation on this method - and seriously, the more " medical journal " it is, the better as he understands numbers and statistics better than testimonials. I presented to him that since I am the one who is largely dealing with this issue why would it matter which doctor I took Hayden to if it meant a more gentle treatment for him? I haven't fully convinced him, but I am determined to stand my ground on this. Please, if anyone can help me, either by directing me to medical articles, websites or your own stories on this group, I would really appreciate it! I am feeling very lost and alone, relatively unsupported (emotionally) by my husband and am just looking for some " been there " testimonials. Please feel free to email me privately if you like, because misery sure loves company. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 I too am horrified! I suppose your husband hasn't been able to see your son's legs as often, and has no idea how much easier things could be using the Ponseti method. I have heard of using Botox, but was wondering if perhaps that is causing the skin breakdown? Here is Dr. Ponseti's e-mail address: ignacio-ponseti @ uiowa.edu (remove the spaces). I too would recommend that you contact him. In the meantime, here are some links about the success rate of the Ponseti method, as well as information about it: http://members.tripod.com/ponseti_links-ivil/ http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html The success rate for using the Ponsete method correctly is 95%. And I haven't ever heard of skin breakdown quite like what your child is experiencing. My son is only 10 months old though, and perhaps someone who has an older child that has been on the message board longer will have heard about it. Regardless, it seems like there is something else going on with the casting, perhaps an allergic reaction or something. I can't imagine how horrible this must be for your little one, and for you. You have definitely come to the right place. Everyone here is so helpful, and knowledgeable about clubfoot and the Ponseti method. There are also others from Canada who will be able to tell you which doctors they would recommend. > Hi there, I was referred to this group by another (clubfootcanada) in > order to obtain some more information about the Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not aware of the > condition ahead of his birth, so it was a surprise when he came out! > I was not freaked out, or worried as I knew right away what it was and > that it was treatable, although I didn't know how. We consulted with > Children's Hospital when he was two days old and were told his were > " moderate to severe " , which according to our Orthopedic Surgeon was > unusual for idiopathic. We were also told his treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and then night time until > he is 4, partnered with special Nu Balance running shoes) > > We left with his first set of casts on. He is now almost four months > old, has had 12 casts and two Botox injections in each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time with the health of > his skin under the casts. His skin has been raw and weeping with very > dry and large patches of eczema. He's gained the reputation of being > the " purple screamer " at the hospital because he gets so worked up > when they are treating him. He looks at me with pain in his eyes, > tears streaming down his face with an expression that says " do something! " > > Six weeks ago, we had a week long break from the casts to heal his > skin, and even though this was going to set us back, we welcomed it. I > realized what I had missed by casting him at two days old. We had > baths together, I kissed his feet obsessively and we played with his toes. > > Four weeks ago, we had a trial run with the boots and bar because the > doctor was concerned about his skin as it was bad right away again. I > struggled for two days with them and he kicked them off about a > jillion times, until I took him back to the hospital and had him > re-casted. The following appointment he had " two week " casts put on > and when I took them off last week I was appalled. I had noticed that > they were getting smelly, but the backs of both knees and the tops of > both feet were raw, weeping, scaly and looked like they had been > burned. I could not believe the smell - it smelled like death. I was > reassured by the doctor that it was okay and we are trying the boots > again. As relieved as I was to make the switch, initially I was not > finding them any less painful in terms of him screaming his head off > when I put them on. One of his heels still isn't really dropped down > enough for the boot and I find that even though I seem to get them on > okay, his feet slip below the marks they made on them for me. It has > been frustrating to say the least. He was very upset the next > morning, crying a lot and that is unusual behaviour for him as he is > generally sunny most of the time. There has been improvement in that > area, but he still kicks them off, his feet slip inside of them and he > has devised a way to kick that loosens the nut on one of the boots! > > Yesterday I went for a follow up and watched as the doctor reefed his > bad (left) foot up to get the number reading she wanted. He was > screaming and I was trying to keep it together. In addition to that, > when I mentioned that I co-sleep with him the doctor started lecturing > me about sleeping in the same bed with him because of the hardware > maybe not allowing him to move under blankets, blah blah blah. I > found myself having to justify my lifestyle to her and I was very > irked. I didn't bother to tell her that when he does sleep in his > crib, he tummy sleeps as I probably would have been criticized for > that too! I feel very often that she talks down to me and on the rare > occasions that my husband accompanies me to the appointments, she will > talk directly to him and over me. This is perhaps because he has a > degree and I don't. > > It has been recommended to me by others in the Clubfoot Canada group > that I go and see the local doctor that practices the Ponseti Method. > My biggest obstacle will be my husband in this endeavour because he > feels the Botox is cutting edge and is happy with the way things are > going (of course he is, he's not there holding down his son while he > screams every week!) I approached him last night about this issue and > he agreed that I could look into it, but what he wants to see is > documentation on this method - and seriously, the more " medical > journal " it is, the better as he understands numbers and statistics > better than testimonials. I presented to him that since I am the one > who is largely dealing with this issue why would it matter which > doctor I took Hayden to if it meant a more gentle treatment for him? > I haven't fully convinced him, but I am determined to stand my ground > on this. > > Please, if anyone can help me, either by directing me to medical > articles, websites or your own stories on this group, I would really > appreciate it! I am feeling very lost and alone, relatively > unsupported (emotionally) by my husband and am just looking for some > " been there " testimonials. Please feel free to email me privately if > you like, because misery sure loves company. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 I too am horrified! I suppose your husband hasn't been able to see your son's legs as often, and has no idea how much easier things could be using the Ponseti method. I have heard of using Botox, but was wondering if perhaps that is causing the skin breakdown? Here is Dr. Ponseti's e-mail address: ignacio-ponseti @ uiowa.edu (remove the spaces). I too would recommend that you contact him. In the meantime, here are some links about the success rate of the Ponseti method, as well as information about it: http://members.tripod.com/ponseti_links-ivil/ http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html The success rate for using the Ponsete method correctly is 95%. And I haven't ever heard of skin breakdown quite like what your child is experiencing. My son is only 10 months old though, and perhaps someone who has an older child that has been on the message board longer will have heard about it. Regardless, it seems like there is something else going on with the casting, perhaps an allergic reaction or something. I can't imagine how horrible this must be for your little one, and for you. You have definitely come to the right place. Everyone here is so helpful, and knowledgeable about clubfoot and the Ponseti method. There are also others from Canada who will be able to tell you which doctors they would recommend. > Hi there, I was referred to this group by another (clubfootcanada) in > order to obtain some more information about the Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not aware of the > condition ahead of his birth, so it was a surprise when he came out! > I was not freaked out, or worried as I knew right away what it was and > that it was treatable, although I didn't know how. We consulted with > Children's Hospital when he was two days old and were told his were > " moderate to severe " , which according to our Orthopedic Surgeon was > unusual for idiopathic. We were also told his treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and then night time until > he is 4, partnered with special Nu Balance running shoes) > > We left with his first set of casts on. He is now almost four months > old, has had 12 casts and two Botox injections in each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time with the health of > his skin under the casts. His skin has been raw and weeping with very > dry and large patches of eczema. He's gained the reputation of being > the " purple screamer " at the hospital because he gets so worked up > when they are treating him. He looks at me with pain in his eyes, > tears streaming down his face with an expression that says " do something! " > > Six weeks ago, we had a week long break from the casts to heal his > skin, and even though this was going to set us back, we welcomed it. I > realized what I had missed by casting him at two days old. We had > baths together, I kissed his feet obsessively and we played with his toes. > > Four weeks ago, we had a trial run with the boots and bar because the > doctor was concerned about his skin as it was bad right away again. I > struggled for two days with them and he kicked them off about a > jillion times, until I took him back to the hospital and had him > re-casted. The following appointment he had " two week " casts put on > and when I took them off last week I was appalled. I had noticed that > they were getting smelly, but the backs of both knees and the tops of > both feet were raw, weeping, scaly and looked like they had been > burned. I could not believe the smell - it smelled like death. I was > reassured by the doctor that it was okay and we are trying the boots > again. As relieved as I was to make the switch, initially I was not > finding them any less painful in terms of him screaming his head off > when I put them on. One of his heels still isn't really dropped down > enough for the boot and I find that even though I seem to get them on > okay, his feet slip below the marks they made on them for me. It has > been frustrating to say the least. He was very upset the next > morning, crying a lot and that is unusual behaviour for him as he is > generally sunny most of the time. There has been improvement in that > area, but he still kicks them off, his feet slip inside of them and he > has devised a way to kick that loosens the nut on one of the boots! > > Yesterday I went for a follow up and watched as the doctor reefed his > bad (left) foot up to get the number reading she wanted. He was > screaming and I was trying to keep it together. In addition to that, > when I mentioned that I co-sleep with him the doctor started lecturing > me about sleeping in the same bed with him because of the hardware > maybe not allowing him to move under blankets, blah blah blah. I > found myself having to justify my lifestyle to her and I was very > irked. I didn't bother to tell her that when he does sleep in his > crib, he tummy sleeps as I probably would have been criticized for > that too! I feel very often that she talks down to me and on the rare > occasions that my husband accompanies me to the appointments, she will > talk directly to him and over me. This is perhaps because he has a > degree and I don't. > > It has been recommended to me by others in the Clubfoot Canada group > that I go and see the local doctor that practices the Ponseti Method. > My biggest obstacle will be my husband in this endeavour because he > feels the Botox is cutting edge and is happy with the way things are > going (of course he is, he's not there holding down his son while he > screams every week!) I approached him last night about this issue and > he agreed that I could look into it, but what he wants to see is > documentation on this method - and seriously, the more " medical > journal " it is, the better as he understands numbers and statistics > better than testimonials. I presented to him that since I am the one > who is largely dealing with this issue why would it matter which > doctor I took Hayden to if it meant a more gentle treatment for him? > I haven't fully convinced him, but I am determined to stand my ground > on this. > > Please, if anyone can help me, either by directing me to medical > articles, websites or your own stories on this group, I would really > appreciate it! I am feeling very lost and alone, relatively > unsupported (emotionally) by my husband and am just looking for some > " been there " testimonials. Please feel free to email me privately if > you like, because misery sure loves company. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi , Go into the " files " section of this group and you can find reports and statistics on the Ponseti method that you and your husband can read. It sounds like you are going through a lot but you are doing the right thing by finding out as much information as you can to help your son. Our daughter from birth to 5 months was treated with the " tradional method " that gained virtually no correction. We then switched to the Ponseti method at 5 months to avoid the full clubfoot surgery, she was also diagnosed at birth mod. severe bilateral. (also idiopathic) I don't know if I agree with your doctor that it is " unusual " , at least not on this group. She had 10 below the knee casts after birth and I too remember the awful " cast room " . She recieved 7 full leg casts under Dr. Ponseti's hands that worked beautifully and by the time we went to Iowa to see him her feet we much stiffer than when she was born but he was still able to correct them. The shoe brace you are using if it is like the Foot Abduction Bar that the Ponseti method uses (little white boots connected to an adjustable or non adjustable metal bar)(there are pictures in the photo section of the group as well) will not work unless the foot is completely corrected. That may be why you are having such problems with it and why it may be painful for your son to wear. I would advise you to get in touch with a properly trained Ponseti doctor or doctor Ponseti himself for some advise. There is a list of qualified Ponseti doctors (someone else please jump in here because I don't know if it is listed on this group or just on Ponseti's own website) sorry about that! My daughter is 5 1/2 now and did wonderfully with the Ponseti method even though we started it later. I was very impressed with the gentle way the correction works (unlike our previous experience locally) and we too had issues with our origional doc's bedside manner. I left each appointment in tears with heartache and unanswered questions. Please encourage your husband to read the articles so that he can understand how important a good correction is for your son now and especially for your sons future. Hang in there! ~Holly and (mod. severe bilateral, born: 2-11-00, we are from Michigan) > > Hi there, I was referred to this group by another (clubfootcanada) in > order to obtain some more information about the Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not aware of the > condition ahead of his birth, so it was a surprise when he came out! > I was not freaked out, or worried as I knew right away what it was and > that it was treatable, although I didn't know how. We consulted with > Children's Hospital when he was two days old and were told his were > " moderate to severe " , which according to our Orthopedic Surgeon was > unusual for idiopathic. We were also told his treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and then night time until > he is 4, partnered with special Nu Balance running shoes) > > We left with his first set of casts on. He is now almost four months > old, has had 12 casts and two Botox injections in each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time with the health of > his skin under the casts. His skin has been raw and weeping with very > dry and large patches of eczema. He's gained the reputation of being > the " purple screamer " at the hospital because he gets so worked up > when they are treating him. He looks at me with pain in his eyes, > tears streaming down his face with an expression that says " do something! " > > Six weeks ago, we had a week long break from the casts to heal his > skin, and even though this was going to set us back, we welcomed it. I > realized what I had missed by casting him at two days old. We had > baths together, I kissed his feet obsessively and we played with his toes. > > Four weeks ago, we had a trial run with the boots and bar because the > doctor was concerned about his skin as it was bad right away again. I > struggled for two days with them and he kicked them off about a > jillion times, until I took him back to the hospital and had him > re-casted. The following appointment he had " two week " casts put on > and when I took them off last week I was appalled. I had noticed that > they were getting smelly, but the backs of both knees and the tops of > both feet were raw, weeping, scaly and looked like they had been > burned. I could not believe the smell - it smelled like death. I was > reassured by the doctor that it was okay and we are trying the boots > again. As relieved as I was to make the switch, initially I was not > finding them any less painful in terms of him screaming his head off > when I put them on. One of his heels still isn't really dropped down > enough for the boot and I find that even though I seem to get them on > okay, his feet slip below the marks they made on them for me. It has > been frustrating to say the least. He was very upset the next > morning, crying a lot and that is unusual behaviour for him as he is > generally sunny most of the time. There has been improvement in that > area, but he still kicks them off, his feet slip inside of them and he > has devised a way to kick that loosens the nut on one of the boots! > > Yesterday I went for a follow up and watched as the doctor reefed his > bad (left) foot up to get the number reading she wanted. He was > screaming and I was trying to keep it together. In addition to that, > when I mentioned that I co-sleep with him the doctor started lecturing > me about sleeping in the same bed with him because of the hardware > maybe not allowing him to move under blankets, blah blah blah. I > found myself having to justify my lifestyle to her and I was very > irked. I didn't bother to tell her that when he does sleep in his > crib, he tummy sleeps as I probably would have been criticized for > that too! I feel very often that she talks down to me and on the rare > occasions that my husband accompanies me to the appointments, she will > talk directly to him and over me. This is perhaps because he has a > degree and I don't. > > It has been recommended to me by others in the Clubfoot Canada group > that I go and see the local doctor that practices the Ponseti Method. > My biggest obstacle will be my husband in this endeavour because he > feels the Botox is cutting edge and is happy with the way things are > going (of course he is, he's not there holding down his son while he > screams every week!) I approached him last night about this issue and > he agreed that I could look into it, but what he wants to see is > documentation on this method - and seriously, the more " medical > journal " it is, the better as he understands numbers and statistics > better than testimonials. I presented to him that since I am the one > who is largely dealing with this issue why would it matter which > doctor I took Hayden to if it meant a more gentle treatment for him? > I haven't fully convinced him, but I am determined to stand my ground > on this. > > Please, if anyone can help me, either by directing me to medical > articles, websites or your own stories on this group, I would really > appreciate it! I am feeling very lost and alone, relatively > unsupported (emotionally) by my husband and am just looking for some > " been there " testimonials. Please feel free to email me privately if > you like, because misery sure loves company. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi , Go into the " files " section of this group and you can find reports and statistics on the Ponseti method that you and your husband can read. It sounds like you are going through a lot but you are doing the right thing by finding out as much information as you can to help your son. Our daughter from birth to 5 months was treated with the " tradional method " that gained virtually no correction. We then switched to the Ponseti method at 5 months to avoid the full clubfoot surgery, she was also diagnosed at birth mod. severe bilateral. (also idiopathic) I don't know if I agree with your doctor that it is " unusual " , at least not on this group. She had 10 below the knee casts after birth and I too remember the awful " cast room " . She recieved 7 full leg casts under Dr. Ponseti's hands that worked beautifully and by the time we went to Iowa to see him her feet we much stiffer than when she was born but he was still able to correct them. The shoe brace you are using if it is like the Foot Abduction Bar that the Ponseti method uses (little white boots connected to an adjustable or non adjustable metal bar)(there are pictures in the photo section of the group as well) will not work unless the foot is completely corrected. That may be why you are having such problems with it and why it may be painful for your son to wear. I would advise you to get in touch with a properly trained Ponseti doctor or doctor Ponseti himself for some advise. There is a list of qualified Ponseti doctors (someone else please jump in here because I don't know if it is listed on this group or just on Ponseti's own website) sorry about that! My daughter is 5 1/2 now and did wonderfully with the Ponseti method even though we started it later. I was very impressed with the gentle way the correction works (unlike our previous experience locally) and we too had issues with our origional doc's bedside manner. I left each appointment in tears with heartache and unanswered questions. Please encourage your husband to read the articles so that he can understand how important a good correction is for your son now and especially for your sons future. Hang in there! ~Holly and (mod. severe bilateral, born: 2-11-00, we are from Michigan) > > Hi there, I was referred to this group by another (clubfootcanada) in > order to obtain some more information about the Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not aware of the > condition ahead of his birth, so it was a surprise when he came out! > I was not freaked out, or worried as I knew right away what it was and > that it was treatable, although I didn't know how. We consulted with > Children's Hospital when he was two days old and were told his were > " moderate to severe " , which according to our Orthopedic Surgeon was > unusual for idiopathic. We were also told his treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and then night time until > he is 4, partnered with special Nu Balance running shoes) > > We left with his first set of casts on. He is now almost four months > old, has had 12 casts and two Botox injections in each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time with the health of > his skin under the casts. His skin has been raw and weeping with very > dry and large patches of eczema. He's gained the reputation of being > the " purple screamer " at the hospital because he gets so worked up > when they are treating him. He looks at me with pain in his eyes, > tears streaming down his face with an expression that says " do something! " > > Six weeks ago, we had a week long break from the casts to heal his > skin, and even though this was going to set us back, we welcomed it. I > realized what I had missed by casting him at two days old. We had > baths together, I kissed his feet obsessively and we played with his toes. > > Four weeks ago, we had a trial run with the boots and bar because the > doctor was concerned about his skin as it was bad right away again. I > struggled for two days with them and he kicked them off about a > jillion times, until I took him back to the hospital and had him > re-casted. The following appointment he had " two week " casts put on > and when I took them off last week I was appalled. I had noticed that > they were getting smelly, but the backs of both knees and the tops of > both feet were raw, weeping, scaly and looked like they had been > burned. I could not believe the smell - it smelled like death. I was > reassured by the doctor that it was okay and we are trying the boots > again. As relieved as I was to make the switch, initially I was not > finding them any less painful in terms of him screaming his head off > when I put them on. One of his heels still isn't really dropped down > enough for the boot and I find that even though I seem to get them on > okay, his feet slip below the marks they made on them for me. It has > been frustrating to say the least. He was very upset the next > morning, crying a lot and that is unusual behaviour for him as he is > generally sunny most of the time. There has been improvement in that > area, but he still kicks them off, his feet slip inside of them and he > has devised a way to kick that loosens the nut on one of the boots! > > Yesterday I went for a follow up and watched as the doctor reefed his > bad (left) foot up to get the number reading she wanted. He was > screaming and I was trying to keep it together. In addition to that, > when I mentioned that I co-sleep with him the doctor started lecturing > me about sleeping in the same bed with him because of the hardware > maybe not allowing him to move under blankets, blah blah blah. I > found myself having to justify my lifestyle to her and I was very > irked. I didn't bother to tell her that when he does sleep in his > crib, he tummy sleeps as I probably would have been criticized for > that too! I feel very often that she talks down to me and on the rare > occasions that my husband accompanies me to the appointments, she will > talk directly to him and over me. This is perhaps because he has a > degree and I don't. > > It has been recommended to me by others in the Clubfoot Canada group > that I go and see the local doctor that practices the Ponseti Method. > My biggest obstacle will be my husband in this endeavour because he > feels the Botox is cutting edge and is happy with the way things are > going (of course he is, he's not there holding down his son while he > screams every week!) I approached him last night about this issue and > he agreed that I could look into it, but what he wants to see is > documentation on this method - and seriously, the more " medical > journal " it is, the better as he understands numbers and statistics > better than testimonials. I presented to him that since I am the one > who is largely dealing with this issue why would it matter which > doctor I took Hayden to if it meant a more gentle treatment for him? > I haven't fully convinced him, but I am determined to stand my ground > on this. > > Please, if anyone can help me, either by directing me to medical > articles, websites or your own stories on this group, I would really > appreciate it! I am feeling very lost and alone, relatively > unsupported (emotionally) by my husband and am just looking for some > " been there " testimonials. Please feel free to email me privately if > you like, because misery sure loves company. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 : Now that I have dried my eyes let me see how I can help. Your son and my son are very close in age. He was born on June 11th, 4 months old as of yesterday---sob sob. I do hope you can convience you husband that the current care of your son should be questioned and other opinions and treatment(Ponseti) should be more than considered, it (opinions and other treatment) must be done. There is a wealth of information in the files section of this group and so many parents with stories that surely your husband will have a very open mind. I haven't seen much research or history on the botox injections to know if we would have considered it " if " it given as an option. I am bothered that your Ortho doctor stated it was unusal. My son was born with BL CF (moderate to severe) as well and we were told that was common and treatable. I am attaching an email that I sent to Dr. Ponseti after much crying, sleepness nights not just from my son but from me and husband in a seperate email directly to you. We were very frustrated with the so called " top doctor at our Children's Hospital " and treatment. They told us they were doing the Ponseti method and they were but we were rushed through the process and therefore his Markell shoes (white open toe boots) and bar were never going to fit because he was not corrected properly. His feet would not do well in those shoes we found out after visiting with Dr. Ponseti, which we already knew. I emailed Dr. Ponseti after talking with many on this group amd he emailed us and called and asked if we could come to Iowa. My husband and I cleared everything. couldn't worry about the expenses and the bills at home and just went. Best thing we could have done. Now I am not saying run to Iowa but email Dr. Ponseti and send him pics if you can. Call him too. He is a wonderful man who is just amazing. I can not say enough. mom to 6-11-05 BL CF 22 hrs P/M wrote: Hi there, I was referred to this group by another (clubfootcanada) in order to obtain some more information about the Pnseti method of treating clubfoot. Hello All, my name is and my son was born on June 19th , 2005 with bilateral clubfoot (idiopathic). We were not aware of the condition ahead of his birth, so it was a surprise when he came out! I was not freaked out, or worried as I knew right away what it was and that it was treatable, although I didn't know how. We consulted with Children's Hospital when he was two days old and were told his were " moderate to severe " , which according to our Orthopedic Surgeon was unusual for idiopathic. We were also told his treatment would be as follows: 8 weeks of casts (once a week) Botox injection in each Achilles tendon Boots and bar (24/7 until he's able to stand and then night time until he is 4, partnered with special Nu Balance running shoes) We left with his first set of casts on. He is now almost four months old, has had 12 casts and two Botox injections in each calf and just last week was put in the boots and bar. From the beginning he has had a very difficult time with the health of his skin under the casts. His skin has been raw and weeping with very dry and large patches of eczema. He's gained the reputation of being the " purple screamer " at the hospital because he gets so worked up when they are treating him. He looks at me with pain in his eyes, tears streaming down his face with an expression that says " do something! " Six weeks ago, we had a week long break from the casts to heal his skin, and even though this was going to set us back, we welcomed it. I realized what I had missed by casting him at two days old. We had baths together, I kissed his feet obsessively and we played with his toes. Four weeks ago, we had a trial run with the boots and bar because the doctor was concerned about his skin as it was bad right away again. I struggled for two days with them and he kicked them off about a jillion times, until I took him back to the hospital and had him re-casted. The following appointment he had " two week " casts put on and when I took them off last week I was appalled. I had noticed that they were getting smelly, but the backs of both knees and the tops of both feet were raw, weeping, scaly and looked like they had been burned. I could not believe the smell - it smelled like death. I was reassured by the doctor that it was okay and we are trying the boots again. As relieved as I was to make the switch, initially I was not finding them any less painful in terms of him screaming his head off when I put them on. One of his heels still isn't really dropped down enough for the boot and I find that even though I seem to get them on okay, his feet slip below the marks they made on them for me. It has been frustrating to say the least. He was very upset the next morning, crying a lot and that is unusual behaviour for him as he is generally sunny most of the time. There has been improvement in that area, but he still kicks them off, his feet slip inside of them and he has devised a way to kick that loosens the nut on one of the boots! Yesterday I went for a follow up and watched as the doctor reefed his bad (left) foot up to get the number reading she wanted. He was screaming and I was trying to keep it together. In addition to that, when I mentioned that I co-sleep with him the doctor started lecturing me about sleeping in the same bed with him because of the hardware maybe not allowing him to move under blankets, blah blah blah. I found myself having to justify my lifestyle to her and I was very irked. I didn't bother to tell her that when he does sleep in his crib, he tummy sleeps as I probably would have been criticized for that too! I feel very often that she talks down to me and on the rare occasions that my husband accompanies me to the appointments, she will talk directly to him and over me. This is perhaps because he has a degree and I don't. It has been recommended to me by others in the Clubfoot Canada group that I go and see the local doctor that practices the Ponseti Method. My biggest obstacle will be my husband in this endeavour because he feels the Botox is cutting edge and is happy with the way things are going (of course he is, he's not there holding down his son while he screams every week!) I approached him last night about this issue and he agreed that I could look into it, but what he wants to see is documentation on this method - and seriously, the more " medical journal " it is, the better as he understands numbers and statistics better than testimonials. I presented to him that since I am the one who is largely dealing with this issue why would it matter which doctor I took Hayden to if it meant a more gentle treatment for him? I haven't fully convinced him, but I am determined to stand my ground on this. Please, if anyone can help me, either by directing me to medical articles, websites or your own stories on this group, I would really appreciate it! I am feeling very lost and alone, relatively unsupported (emotionally) by my husband and am just looking for some " been there " testimonials. Please feel free to email me privately if you like, because misery sure loves company. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 : Now that I have dried my eyes let me see how I can help. Your son and my son are very close in age. He was born on June 11th, 4 months old as of yesterday---sob sob. I do hope you can convience you husband that the current care of your son should be questioned and other opinions and treatment(Ponseti) should be more than considered, it (opinions and other treatment) must be done. There is a wealth of information in the files section of this group and so many parents with stories that surely your husband will have a very open mind. I haven't seen much research or history on the botox injections to know if we would have considered it " if " it given as an option. I am bothered that your Ortho doctor stated it was unusal. My son was born with BL CF (moderate to severe) as well and we were told that was common and treatable. I am attaching an email that I sent to Dr. Ponseti after much crying, sleepness nights not just from my son but from me and husband in a seperate email directly to you. We were very frustrated with the so called " top doctor at our Children's Hospital " and treatment. They told us they were doing the Ponseti method and they were but we were rushed through the process and therefore his Markell shoes (white open toe boots) and bar were never going to fit because he was not corrected properly. His feet would not do well in those shoes we found out after visiting with Dr. Ponseti, which we already knew. I emailed Dr. Ponseti after talking with many on this group amd he emailed us and called and asked if we could come to Iowa. My husband and I cleared everything. couldn't worry about the expenses and the bills at home and just went. Best thing we could have done. Now I am not saying run to Iowa but email Dr. Ponseti and send him pics if you can. Call him too. He is a wonderful man who is just amazing. I can not say enough. mom to 6-11-05 BL CF 22 hrs P/M wrote: Hi there, I was referred to this group by another (clubfootcanada) in order to obtain some more information about the Pnseti method of treating clubfoot. Hello All, my name is and my son was born on June 19th , 2005 with bilateral clubfoot (idiopathic). We were not aware of the condition ahead of his birth, so it was a surprise when he came out! I was not freaked out, or worried as I knew right away what it was and that it was treatable, although I didn't know how. We consulted with Children's Hospital when he was two days old and were told his were " moderate to severe " , which according to our Orthopedic Surgeon was unusual for idiopathic. We were also told his treatment would be as follows: 8 weeks of casts (once a week) Botox injection in each Achilles tendon Boots and bar (24/7 until he's able to stand and then night time until he is 4, partnered with special Nu Balance running shoes) We left with his first set of casts on. He is now almost four months old, has had 12 casts and two Botox injections in each calf and just last week was put in the boots and bar. From the beginning he has had a very difficult time with the health of his skin under the casts. His skin has been raw and weeping with very dry and large patches of eczema. He's gained the reputation of being the " purple screamer " at the hospital because he gets so worked up when they are treating him. He looks at me with pain in his eyes, tears streaming down his face with an expression that says " do something! " Six weeks ago, we had a week long break from the casts to heal his skin, and even though this was going to set us back, we welcomed it. I realized what I had missed by casting him at two days old. We had baths together, I kissed his feet obsessively and we played with his toes. Four weeks ago, we had a trial run with the boots and bar because the doctor was concerned about his skin as it was bad right away again. I struggled for two days with them and he kicked them off about a jillion times, until I took him back to the hospital and had him re-casted. The following appointment he had " two week " casts put on and when I took them off last week I was appalled. I had noticed that they were getting smelly, but the backs of both knees and the tops of both feet were raw, weeping, scaly and looked like they had been burned. I could not believe the smell - it smelled like death. I was reassured by the doctor that it was okay and we are trying the boots again. As relieved as I was to make the switch, initially I was not finding them any less painful in terms of him screaming his head off when I put them on. One of his heels still isn't really dropped down enough for the boot and I find that even though I seem to get them on okay, his feet slip below the marks they made on them for me. It has been frustrating to say the least. He was very upset the next morning, crying a lot and that is unusual behaviour for him as he is generally sunny most of the time. There has been improvement in that area, but he still kicks them off, his feet slip inside of them and he has devised a way to kick that loosens the nut on one of the boots! Yesterday I went for a follow up and watched as the doctor reefed his bad (left) foot up to get the number reading she wanted. He was screaming and I was trying to keep it together. In addition to that, when I mentioned that I co-sleep with him the doctor started lecturing me about sleeping in the same bed with him because of the hardware maybe not allowing him to move under blankets, blah blah blah. I found myself having to justify my lifestyle to her and I was very irked. I didn't bother to tell her that when he does sleep in his crib, he tummy sleeps as I probably would have been criticized for that too! I feel very often that she talks down to me and on the rare occasions that my husband accompanies me to the appointments, she will talk directly to him and over me. This is perhaps because he has a degree and I don't. It has been recommended to me by others in the Clubfoot Canada group that I go and see the local doctor that practices the Ponseti Method. My biggest obstacle will be my husband in this endeavour because he feels the Botox is cutting edge and is happy with the way things are going (of course he is, he's not there holding down his son while he screams every week!) I approached him last night about this issue and he agreed that I could look into it, but what he wants to see is documentation on this method - and seriously, the more " medical journal " it is, the better as he understands numbers and statistics better than testimonials. I presented to him that since I am the one who is largely dealing with this issue why would it matter which doctor I took Hayden to if it meant a more gentle treatment for him? I haven't fully convinced him, but I am determined to stand my ground on this. Please, if anyone can help me, either by directing me to medical articles, websites or your own stories on this group, I would really appreciate it! I am feeling very lost and alone, relatively unsupported (emotionally) by my husband and am just looking for some " been there " testimonials. Please feel free to email me privately if you like, because misery sure loves company. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 How easy, or difficult, is it to get to see Dr. Ponseti himself? Also- I was wondering if things such as corrective braces and the shoes needed are usually covered by insurance. Father to 5/3/04, Austin 9/30/05 BLCF and god's healing hand! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 How easy, or difficult, is it to get to see Dr. Ponseti himself? Also- I was wondering if things such as corrective braces and the shoes needed are usually covered by insurance. Father to 5/3/04, Austin 9/30/05 BLCF and god's healing hand! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi , My 3-year-old son has a " moderate to severe " clubfoot as well (5.5 on a scale of 6 apparently), I don't think it's unusual though. He was treated with the Ponseti method which usually involves up to 9 weekly casts, followed by a tenotomy (minor incision in which the achilles tendon is cut), followed by a 3 week cast, followed by the boots and bar. They are usually worn 23h/day for 3 months, then gradually working down to 12-14h/day (or rather night) by the time the child can walk, up to the age of 4. I have heard that some doctors are experimenting with botox instead of the tenotomy but I don't know much about it. My son didn't have any problems with his skin until the last cast where it looked a bit raw in places. Luckily it was the last cast and he was fine within a few days. I noticed that they put a lot of padding underneath all the casts, did your son get that as well? I'm not sure if that's standard or not though. Do you think your sons feet are completely corrected? I think a lot of times the reason for the boots not staying on is that the feet weren't completely corrected. Just a thought. I'm sorry that your son seems to be in so much pain from all this. I can say from my experience that my son wasn't in much pain at all if any, he usually fell asleep during the casting, he cried during the tenotomy but I think that was mainly in protest to his foot being held so tightly since he stopped immediately the doctor released it, and he only cried the first 4 hours of wearing the boots and bar. Since then he's been completely fine with it. I also co-slept occasionally and didn't find that a problem at all. He's wearing a sleeping bag at night, otherwise I might have ended up with bruises though... Your doctor doesn't sound a very friendly person, I think just from that point I would be tempted to switch if I was you. If you can find someone local that is guaranteed to do the Ponseti method then even better I'd say. I don't think it's fair of your husband to tell you not to switch if he's not dealing with it at all. How about asking him to do his own research on the internet? Instead of you proving to him that somewhere else might be better, couldn't he prove to you that were you are is fine? As to his argument of botox being the cutting edge, the downside of it is of course that it's not proven to work yet (as far as I know). I don't have any medical links for you but I'm a very mathematical person myself and I was convinced after reading Dr Ponseti's site, so maybe it'll work on your husband as well... All the best to you, with (*9/02) and Alister (*9/02, RCF, Ponseti method, UK) --- wrote: > Hi there, I was referred to this group by another > (clubfootcanada) in > order to obtain some more information about the > Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on > June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not > aware of the > condition ahead of his birth, so it was a surprise > when he came out! > I was not freaked out, or worried as I knew right > away what it was and > that it was treatable, although I didn't know how. > We consulted with > Children's Hospital when he was two days old and > were told his were > " moderate to severe " , which according to our > Orthopedic Surgeon was > unusual for idiopathic. We were also told his > treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and > then night time until > he is 4, partnered with special Nu Balance running > shoes) > > We left with his first set of casts on. He is now > almost four months > old, has had 12 casts and two Botox injections in > each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time > with the health of > his skin under the casts. His skin has been raw and > weeping with very > dry and large patches of eczema. He's gained the > reputation of being > the " purple screamer " at the hospital because he > gets so worked up > when they are treating him. He looks at me with > pain in his eyes, > tears streaming down his face with an expression > that says " do something! " > > Six weeks ago, we had a week long break from the > casts to heal his > skin, and even though this was going to set us back, > we welcomed it. I > realized what I had missed by casting him at two > days old. We had > baths together, I kissed his feet obsessively and we > played with his toes. > > Four weeks ago, we had a trial run with the boots > and bar because the > doctor was concerned about his skin as it was bad > right away again. I > struggled for two days with them and he kicked them > off about a > jillion times, until I took him back to the hospital > and had him > re-casted. The following appointment he had " two > week " casts put on > and when I took them off last week I was appalled. I > had noticed that > they were getting smelly, but the backs of both > knees and the tops of > both feet were raw, weeping, scaly and looked like > they had been > burned. I could not believe the smell - it smelled > like death. I was > reassured by the doctor that it was okay and we are > trying the boots > again. As relieved as I was to make the switch, > initially I was not > finding them any less painful in terms of him > screaming his head off > when I put them on. One of his heels still isn't > really dropped down > enough for the boot and I find that even though I > seem to get them on > okay, his feet slip below the marks they made on > them for me. It has > been frustrating to say the least. He was very > upset the next > morning, crying a lot and that is unusual behaviour > for him as he is > generally sunny most of the time. There has been > improvement in that > area, but he still kicks them off, his feet slip > inside of them and he > has devised a way to kick that loosens the nut on > one of the boots! > > Yesterday I went for a follow up and watched as the > doctor reefed his > bad (left) foot up to get the number reading she > wanted. He was > screaming and I was trying to keep it together. In > addition to that, > when I mentioned that I co-sleep with him the doctor > started lecturing > me about sleeping in the same bed with him because > of the hardware > maybe not allowing him to move under blankets, blah > blah blah. I > found myself having to justify my lifestyle to her > and I was very > irked. I didn't bother to tell her that when he > does sleep in his > crib, he tummy sleeps as I probably would have been > criticized for > that too! I feel very often that she talks down to > me and on the rare > occasions that my husband accompanies me to the > appointments, she will > talk directly to him and over me. This is perhaps > because he has a > degree and I don't. > > It has been recommended to me by others in the > Clubfoot Canada group > that I go and see the local doctor that practices > the Ponseti Method. > My biggest obstacle will be my husband in this > endeavour because he > feels the Botox is cutting edge and is happy with > the way things are > going (of course he is, he's not there holding down > his son while he > screams every week!) I approached him last night > about this issue and > he agreed that I could look into it, but what he > wants to see is > documentation on this method - and seriously, the > more " medical > journal " it is, the better as he understands numbers > and statistics > better than testimonials. I presented to him that > since I am the one > who is largely dealing with this issue why would it > matter which > doctor I took Hayden to if it meant a more gentle > treatment for him? > I haven't fully convinced him, but I am determined > to stand my ground > on this. > > Please, if anyone can help me, either by directing > me to medical > articles, websites or your own stories on this > group, I would really > appreciate it! I am feeling very lost and alone, > relatively > unsupported (emotionally) by my husband and am just > looking for some > " been there " testimonials. Please feel free to > email me privately if > you like, because misery sure loves company. > > > > > > ___________________________________________________________ How much free photo storage do you get? Store your holiday snaps for FREE with Yahoo! Photos http://uk.photos.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi , My 3-year-old son has a " moderate to severe " clubfoot as well (5.5 on a scale of 6 apparently), I don't think it's unusual though. He was treated with the Ponseti method which usually involves up to 9 weekly casts, followed by a tenotomy (minor incision in which the achilles tendon is cut), followed by a 3 week cast, followed by the boots and bar. They are usually worn 23h/day for 3 months, then gradually working down to 12-14h/day (or rather night) by the time the child can walk, up to the age of 4. I have heard that some doctors are experimenting with botox instead of the tenotomy but I don't know much about it. My son didn't have any problems with his skin until the last cast where it looked a bit raw in places. Luckily it was the last cast and he was fine within a few days. I noticed that they put a lot of padding underneath all the casts, did your son get that as well? I'm not sure if that's standard or not though. Do you think your sons feet are completely corrected? I think a lot of times the reason for the boots not staying on is that the feet weren't completely corrected. Just a thought. I'm sorry that your son seems to be in so much pain from all this. I can say from my experience that my son wasn't in much pain at all if any, he usually fell asleep during the casting, he cried during the tenotomy but I think that was mainly in protest to his foot being held so tightly since he stopped immediately the doctor released it, and he only cried the first 4 hours of wearing the boots and bar. Since then he's been completely fine with it. I also co-slept occasionally and didn't find that a problem at all. He's wearing a sleeping bag at night, otherwise I might have ended up with bruises though... Your doctor doesn't sound a very friendly person, I think just from that point I would be tempted to switch if I was you. If you can find someone local that is guaranteed to do the Ponseti method then even better I'd say. I don't think it's fair of your husband to tell you not to switch if he's not dealing with it at all. How about asking him to do his own research on the internet? Instead of you proving to him that somewhere else might be better, couldn't he prove to you that were you are is fine? As to his argument of botox being the cutting edge, the downside of it is of course that it's not proven to work yet (as far as I know). I don't have any medical links for you but I'm a very mathematical person myself and I was convinced after reading Dr Ponseti's site, so maybe it'll work on your husband as well... All the best to you, with (*9/02) and Alister (*9/02, RCF, Ponseti method, UK) --- wrote: > Hi there, I was referred to this group by another > (clubfootcanada) in > order to obtain some more information about the > Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on > June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not > aware of the > condition ahead of his birth, so it was a surprise > when he came out! > I was not freaked out, or worried as I knew right > away what it was and > that it was treatable, although I didn't know how. > We consulted with > Children's Hospital when he was two days old and > were told his were > " moderate to severe " , which according to our > Orthopedic Surgeon was > unusual for idiopathic. We were also told his > treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and > then night time until > he is 4, partnered with special Nu Balance running > shoes) > > We left with his first set of casts on. He is now > almost four months > old, has had 12 casts and two Botox injections in > each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time > with the health of > his skin under the casts. His skin has been raw and > weeping with very > dry and large patches of eczema. He's gained the > reputation of being > the " purple screamer " at the hospital because he > gets so worked up > when they are treating him. He looks at me with > pain in his eyes, > tears streaming down his face with an expression > that says " do something! " > > Six weeks ago, we had a week long break from the > casts to heal his > skin, and even though this was going to set us back, > we welcomed it. I > realized what I had missed by casting him at two > days old. We had > baths together, I kissed his feet obsessively and we > played with his toes. > > Four weeks ago, we had a trial run with the boots > and bar because the > doctor was concerned about his skin as it was bad > right away again. I > struggled for two days with them and he kicked them > off about a > jillion times, until I took him back to the hospital > and had him > re-casted. The following appointment he had " two > week " casts put on > and when I took them off last week I was appalled. I > had noticed that > they were getting smelly, but the backs of both > knees and the tops of > both feet were raw, weeping, scaly and looked like > they had been > burned. I could not believe the smell - it smelled > like death. I was > reassured by the doctor that it was okay and we are > trying the boots > again. As relieved as I was to make the switch, > initially I was not > finding them any less painful in terms of him > screaming his head off > when I put them on. One of his heels still isn't > really dropped down > enough for the boot and I find that even though I > seem to get them on > okay, his feet slip below the marks they made on > them for me. It has > been frustrating to say the least. He was very > upset the next > morning, crying a lot and that is unusual behaviour > for him as he is > generally sunny most of the time. There has been > improvement in that > area, but he still kicks them off, his feet slip > inside of them and he > has devised a way to kick that loosens the nut on > one of the boots! > > Yesterday I went for a follow up and watched as the > doctor reefed his > bad (left) foot up to get the number reading she > wanted. He was > screaming and I was trying to keep it together. In > addition to that, > when I mentioned that I co-sleep with him the doctor > started lecturing > me about sleeping in the same bed with him because > of the hardware > maybe not allowing him to move under blankets, blah > blah blah. I > found myself having to justify my lifestyle to her > and I was very > irked. I didn't bother to tell her that when he > does sleep in his > crib, he tummy sleeps as I probably would have been > criticized for > that too! I feel very often that she talks down to > me and on the rare > occasions that my husband accompanies me to the > appointments, she will > talk directly to him and over me. This is perhaps > because he has a > degree and I don't. > > It has been recommended to me by others in the > Clubfoot Canada group > that I go and see the local doctor that practices > the Ponseti Method. > My biggest obstacle will be my husband in this > endeavour because he > feels the Botox is cutting edge and is happy with > the way things are > going (of course he is, he's not there holding down > his son while he > screams every week!) I approached him last night > about this issue and > he agreed that I could look into it, but what he > wants to see is > documentation on this method - and seriously, the > more " medical > journal " it is, the better as he understands numbers > and statistics > better than testimonials. I presented to him that > since I am the one > who is largely dealing with this issue why would it > matter which > doctor I took Hayden to if it meant a more gentle > treatment for him? > I haven't fully convinced him, but I am determined > to stand my ground > on this. > > Please, if anyone can help me, either by directing > me to medical > articles, websites or your own stories on this > group, I would really > appreciate it! I am feeling very lost and alone, > relatively > unsupported (emotionally) by my husband and am just > looking for some > " been there " testimonials. Please feel free to > email me privately if > you like, because misery sure loves company. > > > > > > ___________________________________________________________ How much free photo storage do you get? Store your holiday snaps for FREE with Yahoo! Photos http://uk.photos.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi , I agree with everyone else - I would definitely try contacting Dr. Ponseti. I did before the treatment, and since Dr. Ponseti was out of town, his secretary, Joyce, emailed me right back! My daughter, born on August 4, 2005, just finished her casting with Dr. Ponseti. They changed her casts every 4-5 days, so that might help with your baby's skin problems? There are lots of articles written by Dr. P in medical journals. Good luck! Yuuko and > Hi there, I was referred to this group by another (clubfootcanada) in > order to obtain some more information about the Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not aware of the > condition ahead of his birth, so it was a surprise when he came out! > I was not freaked out, or worried as I knew right away what it was and > that it was treatable, although I didn't know how. We consulted with > Children's Hospital when he was two days old and were told his were > " moderate to severe " , which according to our Orthopedic Surgeon was > unusual for idiopathic. We were also told his treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and then night time until > he is 4, partnered with special Nu Balance running shoes) > > We left with his first set of casts on. He is now almost four months > old, has had 12 casts and two Botox injections in each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time with the health of > his skin under the casts. His skin has been raw and weeping with very > dry and large patches of eczema. He's gained the reputation of being > the " purple screamer " at the hospital because he gets so worked up > when they are treating him. He looks at me with pain in his eyes, > tears streaming down his face with an expression that says " do something! " > > Six weeks ago, we had a week long break from the casts to heal his > skin, and even though this was going to set us back, we welcomed it. I > realized what I had missed by casting him at two days old. We had > baths together, I kissed his feet obsessively and we played with his toes. > > Four weeks ago, we had a trial run with the boots and bar because the > doctor was concerned about his skin as it was bad right away again. I > struggled for two days with them and he kicked them off about a > jillion times, until I took him back to the hospital and had him > re-casted. The following appointment he had " two week " casts put on > and when I took them off last week I was appalled. I had noticed that > they were getting smelly, but the backs of both knees and the tops of > both feet were raw, weeping, scaly and looked like they had been > burned. I could not believe the smell - it smelled like death. I was > reassured by the doctor that it was okay and we are trying the boots > again. As relieved as I was to make the switch, initially I was not > finding them any less painful in terms of him screaming his head off > when I put them on. One of his heels still isn't really dropped down > enough for the boot and I find that even though I seem to get them on > okay, his feet slip below the marks they made on them for me. It has > been frustrating to say the least. He was very upset the next > morning, crying a lot and that is unusual behaviour for him as he is > generally sunny most of the time. There has been improvement in that > area, but he still kicks them off, his feet slip inside of them and he > has devised a way to kick that loosens the nut on one of the boots! > > Yesterday I went for a follow up and watched as the doctor reefed his > bad (left) foot up to get the number reading she wanted. He was > screaming and I was trying to keep it together. In addition to that, > when I mentioned that I co-sleep with him the doctor started lecturing > me about sleeping in the same bed with him because of the hardware > maybe not allowing him to move under blankets, blah blah blah. I > found myself having to justify my lifestyle to her and I was very > irked. I didn't bother to tell her that when he does sleep in his > crib, he tummy sleeps as I probably would have been criticized for > that too! I feel very often that she talks down to me and on the rare > occasions that my husband accompanies me to the appointments, she will > talk directly to him and over me. This is perhaps because he has a > degree and I don't. > > It has been recommended to me by others in the Clubfoot Canada group > that I go and see the local doctor that practices the Ponseti Method. > My biggest obstacle will be my husband in this endeavour because he > feels the Botox is cutting edge and is happy with the way things are > going (of course he is, he's not there holding down his son while he > screams every week!) I approached him last night about this issue and > he agreed that I could look into it, but what he wants to see is > documentation on this method - and seriously, the more " medical > journal " it is, the better as he understands numbers and statistics > better than testimonials. I presented to him that since I am the one > who is largely dealing with this issue why would it matter which > doctor I took Hayden to if it meant a more gentle treatment for him? > I haven't fully convinced him, but I am determined to stand my ground > on this. > > Please, if anyone can help me, either by directing me to medical > articles, websites or your own stories on this group, I would really > appreciate it! I am feeling very lost and alone, relatively > unsupported (emotionally) by my husband and am just looking for some > " been there " testimonials. Please feel free to email me privately if > you like, because misery sure loves company. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi , I agree with everyone else - I would definitely try contacting Dr. Ponseti. I did before the treatment, and since Dr. Ponseti was out of town, his secretary, Joyce, emailed me right back! My daughter, born on August 4, 2005, just finished her casting with Dr. Ponseti. They changed her casts every 4-5 days, so that might help with your baby's skin problems? There are lots of articles written by Dr. P in medical journals. Good luck! Yuuko and > Hi there, I was referred to this group by another (clubfootcanada) in > order to obtain some more information about the Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not aware of the > condition ahead of his birth, so it was a surprise when he came out! > I was not freaked out, or worried as I knew right away what it was and > that it was treatable, although I didn't know how. We consulted with > Children's Hospital when he was two days old and were told his were > " moderate to severe " , which according to our Orthopedic Surgeon was > unusual for idiopathic. We were also told his treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and then night time until > he is 4, partnered with special Nu Balance running shoes) > > We left with his first set of casts on. He is now almost four months > old, has had 12 casts and two Botox injections in each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time with the health of > his skin under the casts. His skin has been raw and weeping with very > dry and large patches of eczema. He's gained the reputation of being > the " purple screamer " at the hospital because he gets so worked up > when they are treating him. He looks at me with pain in his eyes, > tears streaming down his face with an expression that says " do something! " > > Six weeks ago, we had a week long break from the casts to heal his > skin, and even though this was going to set us back, we welcomed it. I > realized what I had missed by casting him at two days old. We had > baths together, I kissed his feet obsessively and we played with his toes. > > Four weeks ago, we had a trial run with the boots and bar because the > doctor was concerned about his skin as it was bad right away again. I > struggled for two days with them and he kicked them off about a > jillion times, until I took him back to the hospital and had him > re-casted. The following appointment he had " two week " casts put on > and when I took them off last week I was appalled. I had noticed that > they were getting smelly, but the backs of both knees and the tops of > both feet were raw, weeping, scaly and looked like they had been > burned. I could not believe the smell - it smelled like death. I was > reassured by the doctor that it was okay and we are trying the boots > again. As relieved as I was to make the switch, initially I was not > finding them any less painful in terms of him screaming his head off > when I put them on. One of his heels still isn't really dropped down > enough for the boot and I find that even though I seem to get them on > okay, his feet slip below the marks they made on them for me. It has > been frustrating to say the least. He was very upset the next > morning, crying a lot and that is unusual behaviour for him as he is > generally sunny most of the time. There has been improvement in that > area, but he still kicks them off, his feet slip inside of them and he > has devised a way to kick that loosens the nut on one of the boots! > > Yesterday I went for a follow up and watched as the doctor reefed his > bad (left) foot up to get the number reading she wanted. He was > screaming and I was trying to keep it together. In addition to that, > when I mentioned that I co-sleep with him the doctor started lecturing > me about sleeping in the same bed with him because of the hardware > maybe not allowing him to move under blankets, blah blah blah. I > found myself having to justify my lifestyle to her and I was very > irked. I didn't bother to tell her that when he does sleep in his > crib, he tummy sleeps as I probably would have been criticized for > that too! I feel very often that she talks down to me and on the rare > occasions that my husband accompanies me to the appointments, she will > talk directly to him and over me. This is perhaps because he has a > degree and I don't. > > It has been recommended to me by others in the Clubfoot Canada group > that I go and see the local doctor that practices the Ponseti Method. > My biggest obstacle will be my husband in this endeavour because he > feels the Botox is cutting edge and is happy with the way things are > going (of course he is, he's not there holding down his son while he > screams every week!) I approached him last night about this issue and > he agreed that I could look into it, but what he wants to see is > documentation on this method - and seriously, the more " medical > journal " it is, the better as he understands numbers and statistics > better than testimonials. I presented to him that since I am the one > who is largely dealing with this issue why would it matter which > doctor I took Hayden to if it meant a more gentle treatment for him? > I haven't fully convinced him, but I am determined to stand my ground > on this. > > Please, if anyone can help me, either by directing me to medical > articles, websites or your own stories on this group, I would really > appreciate it! I am feeling very lost and alone, relatively > unsupported (emotionally) by my husband and am just looking for some > " been there " testimonials. Please feel free to email me privately if > you like, because misery sure loves company. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 , I just don't even know where to start. I want to say most importantly, and without hesitation - take your child and run, run far, far away from this doctor. I am both saddened and infuriated by your story. I am livid to think that this doctor has put your son through this much misery, pain and suffering, and all the while is making you think that this is normal. This is not normal. I have heard of a few small sores and skin yeast infections from casts, but what you are describing and when you said that it smelled like death, it just made my skin crawl thinking about what this so called doctor is putting your son through. I am just so upset I can barely type! The Ponseti method is a gentle manipulation of the feet that is scientifically explained in the Global Help Organization booklet which can be found here: http://www.global-help.org/publications/cf.2.pdf The University of Iowa Hospitals and Clinics support a virtual hospital website which has pages and pages of documentation and testimonials. http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html Another website with a myriad of information including links to medical journal published articles: http://members.tripod.com/ponseti_links-ivil/ http://members.tripod.com/ponseti_links-ivil/id1.html If you need more medical journal articles I will find them for you. I will stress again that what your son has endured is NOT normal, nor necessary and I believe you should never ever EVER return to her office. If you would like to share with us more details about your son's treatment I would be interested to hear more about these casts, something that might explain why he has had such horrible skin problems. I have heard about the botox injections but don't really know that much about them to give any input on them. I know they are not part of the Ponseti method, and I don't believe they should be. There are excellent Ponseti method doctors in Canada, what area are you in? Since your son has already been casted, probably incorrectly, I would highly recommend going to one of the best. Even Dr. Ponseti himself if you choose. These doctors listed here are those in Canada who have taken the time to submit case studies to Dr. Ponseti showing that they are using the method correctly and with much success. I have heard from many other parents on the group that Dr. Pirani is one of the best but I believe all four of these are excellent physicians who will take good care of your son's feet. P. Carey, M.D. London Health Sciences Centre Campus-W London ON N6K 4BC Canada Tel: Fax: Email Dr. Carey Dr. son Queen's University 76 Stuart Street Kingston, Ontario, Canada K7L 2V7 Tel: Fax: Email Dr. son Dr. J. Norgrove Penny, M.D. P.O. Box 5007 , B.C., V8R 6N3 Canada Tel: Fax: Email Dr. Penny Shafique Pirani, MD 205-245 East Columbia Street New Westminster British Columbia Canada V3L 3W4 Tel: Fax: Email Dr. Pirani And finally, if you need just moral support we are here. It sounds like you may have a tough road with convincing your hubby but we are here to tell you that you are doing the right thing. You know in your heart that what has been happening is not right and you will do what momma's do, and that is to get the best care possible for your baby. Please take care and give that little baby lots of lovin' from us, and oh, don't keep putting those shoes on him, his feet are clearly not fully corrected and the shoes will only hurt him. The best thing you can do at this point is to give him all the toe kissing and affection you haven't been able to since he's been in casts. It doesn't matter if his feet relapse a bit at this point, honestly, the new doctor will cast him properly and begin anew. And if your husband balks at this you can tell him that I just attended a clubfoot symposium in which one of the doctors discussed this very topic. Best wishes, Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 16 hrs.) > > Hi there, I was referred to this group by another (clubfootcanada) in > order to obtain some more information about the Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not aware of the > condition ahead of his birth, so it was a surprise when he came out! > I was not freaked out, or worried as I knew right away what it was and > that it was treatable, although I didn't know how. We consulted with > Children's Hospital when he was two days old and were told his were > " moderate to severe " , which according to our Orthopedic Surgeon was > unusual for idiopathic. We were also told his treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and then night time until > he is 4, partnered with special Nu Balance running shoes) > > We left with his first set of casts on. He is now almost four months > old, has had 12 casts and two Botox injections in each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time with the health of > his skin under the casts. His skin has been raw and weeping with very > dry and large patches of eczema. He's gained the reputation of being > the " purple screamer " at the hospital because he gets so worked up > when they are treating him. He looks at me with pain in his eyes, > tears streaming down his face with an expression that says " do something! " > > Six weeks ago, we had a week long break from the casts to heal his > skin, and even though this was going to set us back, we welcomed it. I > realized what I had missed by casting him at two days old. We had > baths together, I kissed his feet obsessively and we played with his toes. > > Four weeks ago, we had a trial run with the boots and bar because the > doctor was concerned about his skin as it was bad right away again. I > struggled for two days with them and he kicked them off about a > jillion times, until I took him back to the hospital and had him > re-casted. The following appointment he had " two week " casts put on > and when I took them off last week I was appalled. I had noticed that > they were getting smelly, but the backs of both knees and the tops of > both feet were raw, weeping, scaly and looked like they had been > burned. I could not believe the smell - it smelled like death. I was > reassured by the doctor that it was okay and we are trying the boots > again. As relieved as I was to make the switch, initially I was not > finding them any less painful in terms of him screaming his head off > when I put them on. One of his heels still isn't really dropped down > enough for the boot and I find that even though I seem to get them on > okay, his feet slip below the marks they made on them for me. It has > been frustrating to say the least. He was very upset the next > morning, crying a lot and that is unusual behaviour for him as he is > generally sunny most of the time. There has been improvement in that > area, but he still kicks them off, his feet slip inside of them and he > has devised a way to kick that loosens the nut on one of the boots! > > Yesterday I went for a follow up and watched as the doctor reefed his > bad (left) foot up to get the number reading she wanted. He was > screaming and I was trying to keep it together. In addition to that, > when I mentioned that I co-sleep with him the doctor started lecturing > me about sleeping in the same bed with him because of the hardware > maybe not allowing him to move under blankets, blah blah blah. I > found myself having to justify my lifestyle to her and I was very > irked. I didn't bother to tell her that when he does sleep in his > crib, he tummy sleeps as I probably would have been criticized for > that too! I feel very often that she talks down to me and on the rare > occasions that my husband accompanies me to the appointments, she will > talk directly to him and over me. This is perhaps because he has a > degree and I don't. > > It has been recommended to me by others in the Clubfoot Canada group > that I go and see the local doctor that practices the Ponseti Method. > My biggest obstacle will be my husband in this endeavour because he > feels the Botox is cutting edge and is happy with the way things are > going (of course he is, he's not there holding down his son while he > screams every week!) I approached him last night about this issue and > he agreed that I could look into it, but what he wants to see is > documentation on this method - and seriously, the more " medical > journal " it is, the better as he understands numbers and statistics > better than testimonials. I presented to him that since I am the one > who is largely dealing with this issue why would it matter which > doctor I took Hayden to if it meant a more gentle treatment for him? > I haven't fully convinced him, but I am determined to stand my ground > on this. > > Please, if anyone can help me, either by directing me to medical > articles, websites or your own stories on this group, I would really > appreciate it! I am feeling very lost and alone, relatively > unsupported (emotionally) by my husband and am just looking for some > " been there " testimonials. Please feel free to email me privately if > you like, because misery sure loves company. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 , I just don't even know where to start. I want to say most importantly, and without hesitation - take your child and run, run far, far away from this doctor. I am both saddened and infuriated by your story. I am livid to think that this doctor has put your son through this much misery, pain and suffering, and all the while is making you think that this is normal. This is not normal. I have heard of a few small sores and skin yeast infections from casts, but what you are describing and when you said that it smelled like death, it just made my skin crawl thinking about what this so called doctor is putting your son through. I am just so upset I can barely type! The Ponseti method is a gentle manipulation of the feet that is scientifically explained in the Global Help Organization booklet which can be found here: http://www.global-help.org/publications/cf.2.pdf The University of Iowa Hospitals and Clinics support a virtual hospital website which has pages and pages of documentation and testimonials. http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html Another website with a myriad of information including links to medical journal published articles: http://members.tripod.com/ponseti_links-ivil/ http://members.tripod.com/ponseti_links-ivil/id1.html If you need more medical journal articles I will find them for you. I will stress again that what your son has endured is NOT normal, nor necessary and I believe you should never ever EVER return to her office. If you would like to share with us more details about your son's treatment I would be interested to hear more about these casts, something that might explain why he has had such horrible skin problems. I have heard about the botox injections but don't really know that much about them to give any input on them. I know they are not part of the Ponseti method, and I don't believe they should be. There are excellent Ponseti method doctors in Canada, what area are you in? Since your son has already been casted, probably incorrectly, I would highly recommend going to one of the best. Even Dr. Ponseti himself if you choose. These doctors listed here are those in Canada who have taken the time to submit case studies to Dr. Ponseti showing that they are using the method correctly and with much success. I have heard from many other parents on the group that Dr. Pirani is one of the best but I believe all four of these are excellent physicians who will take good care of your son's feet. P. Carey, M.D. London Health Sciences Centre Campus-W London ON N6K 4BC Canada Tel: Fax: Email Dr. Carey Dr. son Queen's University 76 Stuart Street Kingston, Ontario, Canada K7L 2V7 Tel: Fax: Email Dr. son Dr. J. Norgrove Penny, M.D. P.O. Box 5007 , B.C., V8R 6N3 Canada Tel: Fax: Email Dr. Penny Shafique Pirani, MD 205-245 East Columbia Street New Westminster British Columbia Canada V3L 3W4 Tel: Fax: Email Dr. Pirani And finally, if you need just moral support we are here. It sounds like you may have a tough road with convincing your hubby but we are here to tell you that you are doing the right thing. You know in your heart that what has been happening is not right and you will do what momma's do, and that is to get the best care possible for your baby. Please take care and give that little baby lots of lovin' from us, and oh, don't keep putting those shoes on him, his feet are clearly not fully corrected and the shoes will only hurt him. The best thing you can do at this point is to give him all the toe kissing and affection you haven't been able to since he's been in casts. It doesn't matter if his feet relapse a bit at this point, honestly, the new doctor will cast him properly and begin anew. And if your husband balks at this you can tell him that I just attended a clubfoot symposium in which one of the doctors discussed this very topic. Best wishes, Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 16 hrs.) > > Hi there, I was referred to this group by another (clubfootcanada) in > order to obtain some more information about the Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not aware of the > condition ahead of his birth, so it was a surprise when he came out! > I was not freaked out, or worried as I knew right away what it was and > that it was treatable, although I didn't know how. We consulted with > Children's Hospital when he was two days old and were told his were > " moderate to severe " , which according to our Orthopedic Surgeon was > unusual for idiopathic. We were also told his treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and then night time until > he is 4, partnered with special Nu Balance running shoes) > > We left with his first set of casts on. He is now almost four months > old, has had 12 casts and two Botox injections in each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time with the health of > his skin under the casts. His skin has been raw and weeping with very > dry and large patches of eczema. He's gained the reputation of being > the " purple screamer " at the hospital because he gets so worked up > when they are treating him. He looks at me with pain in his eyes, > tears streaming down his face with an expression that says " do something! " > > Six weeks ago, we had a week long break from the casts to heal his > skin, and even though this was going to set us back, we welcomed it. I > realized what I had missed by casting him at two days old. We had > baths together, I kissed his feet obsessively and we played with his toes. > > Four weeks ago, we had a trial run with the boots and bar because the > doctor was concerned about his skin as it was bad right away again. I > struggled for two days with them and he kicked them off about a > jillion times, until I took him back to the hospital and had him > re-casted. The following appointment he had " two week " casts put on > and when I took them off last week I was appalled. I had noticed that > they were getting smelly, but the backs of both knees and the tops of > both feet were raw, weeping, scaly and looked like they had been > burned. I could not believe the smell - it smelled like death. I was > reassured by the doctor that it was okay and we are trying the boots > again. As relieved as I was to make the switch, initially I was not > finding them any less painful in terms of him screaming his head off > when I put them on. One of his heels still isn't really dropped down > enough for the boot and I find that even though I seem to get them on > okay, his feet slip below the marks they made on them for me. It has > been frustrating to say the least. He was very upset the next > morning, crying a lot and that is unusual behaviour for him as he is > generally sunny most of the time. There has been improvement in that > area, but he still kicks them off, his feet slip inside of them and he > has devised a way to kick that loosens the nut on one of the boots! > > Yesterday I went for a follow up and watched as the doctor reefed his > bad (left) foot up to get the number reading she wanted. He was > screaming and I was trying to keep it together. In addition to that, > when I mentioned that I co-sleep with him the doctor started lecturing > me about sleeping in the same bed with him because of the hardware > maybe not allowing him to move under blankets, blah blah blah. I > found myself having to justify my lifestyle to her and I was very > irked. I didn't bother to tell her that when he does sleep in his > crib, he tummy sleeps as I probably would have been criticized for > that too! I feel very often that she talks down to me and on the rare > occasions that my husband accompanies me to the appointments, she will > talk directly to him and over me. This is perhaps because he has a > degree and I don't. > > It has been recommended to me by others in the Clubfoot Canada group > that I go and see the local doctor that practices the Ponseti Method. > My biggest obstacle will be my husband in this endeavour because he > feels the Botox is cutting edge and is happy with the way things are > going (of course he is, he's not there holding down his son while he > screams every week!) I approached him last night about this issue and > he agreed that I could look into it, but what he wants to see is > documentation on this method - and seriously, the more " medical > journal " it is, the better as he understands numbers and statistics > better than testimonials. I presented to him that since I am the one > who is largely dealing with this issue why would it matter which > doctor I took Hayden to if it meant a more gentle treatment for him? > I haven't fully convinced him, but I am determined to stand my ground > on this. > > Please, if anyone can help me, either by directing me to medical > articles, websites or your own stories on this group, I would really > appreciate it! I am feeling very lost and alone, relatively > unsupported (emotionally) by my husband and am just looking for some > " been there " testimonials. Please feel free to email me privately if > you like, because misery sure loves company. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hello , I am sorry that you are having problems and hope that they will get resolved. I will try to provide you with some links to prior messages relating to Botox and also the Ponseti method. This is a link to a message from November 11, 2004. http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/26927 One of the original Botulism Papers from Dr. Alverez, Vancouver, B.C., Canada was presented at the May 2002 Pediatric Orthopedic Society of North America (POSNA) Convention - Scientific Papers and Posters on Clubfoot. I attended that meeting and provided this report on what was said. http://groups.yahoo.com/group/nosurgery4clubfoot/message/11030 I would encourage you to at least consider getting a second opinion from a local Ponseti method doctor such as Dr. Shafique Pirani at Royal Columbian Hospital. Getting a second opinion would at least give you some additional perspective on the alternatives without yet having to change the direction you are going until you feel comfortable. Here are some links to articles on the Ponseti method that may provide some additional documentation. http://members.tripod.com/ponseti_links-ivil/id1.html A message about Dr. Pirani's MRI Study on treated clubfeet can be seen at http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/9583 A message about the Instructional Course Lecture in Feb 2002 issue of the Journal of Bone and Joint Surgery (JBJS) http://groups.yahoo.com/group/nosurgery4clubfoot/message/10996 I hope that this information is of help. and (3-17-99) http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/egbert.html > > Hi there, I was referred to this group by another (clubfootcanada) in > order to obtain some more information about the Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not aware of the > condition ahead of his birth, so it was a surprise when he came out! > I was not freaked out, or worried as I knew right away what it was and > that it was treatable, although I didn't know how. We consulted with > Children's Hospital when he was two days old and were told his were > " moderate to severe " , which according to our Orthopedic Surgeon was > unusual for idiopathic. We were also told his treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and then night time until > he is 4, partnered with special Nu Balance running shoes) > > We left with his first set of casts on. He is now almost four months > old, has had 12 casts and two Botox injections in each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time with the health of > his skin under the casts. His skin has been raw and weeping with very > dry and large patches of eczema. He's gained the reputation of being > the " purple screamer " at the hospital because he gets so worked up > when they are treating him. He looks at me with pain in his eyes, > tears streaming down his face with an expression that says " do something! " > > Six weeks ago, we had a week long break from the casts to heal his > skin, and even though this was going to set us back, we welcomed it. I > realized what I had missed by casting him at two days old. We had > baths together, I kissed his feet obsessively and we played with his toes. > > Four weeks ago, we had a trial run with the boots and bar because the > doctor was concerned about his skin as it was bad right away again. I > struggled for two days with them and he kicked them off about a > jillion times, until I took him back to the hospital and had him > re-casted. The following appointment he had " two week " casts put on > and when I took them off last week I was appalled. I had noticed that > they were getting smelly, but the backs of both knees and the tops of > both feet were raw, weeping, scaly and looked like they had been > burned. I could not believe the smell - it smelled like death. I was > reassured by the doctor that it was okay and we are trying the boots > again. As relieved as I was to make the switch, initially I was not > finding them any less painful in terms of him screaming his head off > when I put them on. One of his heels still isn't really dropped down > enough for the boot and I find that even though I seem to get them on > okay, his feet slip below the marks they made on them for me. It has > been frustrating to say the least. He was very upset the next > morning, crying a lot and that is unusual behaviour for him as he is > generally sunny most of the time. There has been improvement in that > area, but he still kicks them off, his feet slip inside of them and he > has devised a way to kick that loosens the nut on one of the boots! > > Yesterday I went for a follow up and watched as the doctor reefed his > bad (left) foot up to get the number reading she wanted. He was > screaming and I was trying to keep it together. In addition to that, > when I mentioned that I co-sleep with him the doctor started lecturing > me about sleeping in the same bed with him because of the hardware > maybe not allowing him to move under blankets, blah blah blah. I > found myself having to justify my lifestyle to her and I was very > irked. I didn't bother to tell her that when he does sleep in his > crib, he tummy sleeps as I probably would have been criticized for > that too! I feel very often that she talks down to me and on the rare > occasions that my husband accompanies me to the appointments, she will > talk directly to him and over me. This is perhaps because he has a > degree and I don't. > > It has been recommended to me by others in the Clubfoot Canada group > that I go and see the local doctor that practices the Ponseti Method. > My biggest obstacle will be my husband in this endeavour because he > feels the Botox is cutting edge and is happy with the way things are > going (of course he is, he's not there holding down his son while he > screams every week!) I approached him last night about this issue and > he agreed that I could look into it, but what he wants to see is > documentation on this method - and seriously, the more " medical > journal " it is, the better as he understands numbers and statistics > better than testimonials. I presented to him that since I am the one > who is largely dealing with this issue why would it matter which > doctor I took Hayden to if it meant a more gentle treatment for him? > I haven't fully convinced him, but I am determined to stand my ground > on this. > > Please, if anyone can help me, either by directing me to medical > articles, websites or your own stories on this group, I would really > appreciate it! I am feeling very lost and alone, relatively > unsupported (emotionally) by my husband and am just looking for some > " been there " testimonials. Please feel free to email me privately if > you like, because misery sure loves company. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hello , I am sorry that you are having problems and hope that they will get resolved. I will try to provide you with some links to prior messages relating to Botox and also the Ponseti method. This is a link to a message from November 11, 2004. http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/26927 One of the original Botulism Papers from Dr. Alverez, Vancouver, B.C., Canada was presented at the May 2002 Pediatric Orthopedic Society of North America (POSNA) Convention - Scientific Papers and Posters on Clubfoot. I attended that meeting and provided this report on what was said. http://groups.yahoo.com/group/nosurgery4clubfoot/message/11030 I would encourage you to at least consider getting a second opinion from a local Ponseti method doctor such as Dr. Shafique Pirani at Royal Columbian Hospital. Getting a second opinion would at least give you some additional perspective on the alternatives without yet having to change the direction you are going until you feel comfortable. Here are some links to articles on the Ponseti method that may provide some additional documentation. http://members.tripod.com/ponseti_links-ivil/id1.html A message about Dr. Pirani's MRI Study on treated clubfeet can be seen at http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/9583 A message about the Instructional Course Lecture in Feb 2002 issue of the Journal of Bone and Joint Surgery (JBJS) http://groups.yahoo.com/group/nosurgery4clubfoot/message/10996 I hope that this information is of help. and (3-17-99) http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/egbert.html > > Hi there, I was referred to this group by another (clubfootcanada) in > order to obtain some more information about the Pnseti method of > treating clubfoot. > > Hello All, my name is and my son was born on June 19th , 2005 > with bilateral clubfoot (idiopathic). We were not aware of the > condition ahead of his birth, so it was a surprise when he came out! > I was not freaked out, or worried as I knew right away what it was and > that it was treatable, although I didn't know how. We consulted with > Children's Hospital when he was two days old and were told his were > " moderate to severe " , which according to our Orthopedic Surgeon was > unusual for idiopathic. We were also told his treatment would be as > follows: > > 8 weeks of casts (once a week) > Botox injection in each Achilles tendon > Boots and bar (24/7 until he's able to stand and then night time until > he is 4, partnered with special Nu Balance running shoes) > > We left with his first set of casts on. He is now almost four months > old, has had 12 casts and two Botox injections in each calf and > just last week was put in the boots and bar. > > From the beginning he has had a very difficult time with the health of > his skin under the casts. His skin has been raw and weeping with very > dry and large patches of eczema. He's gained the reputation of being > the " purple screamer " at the hospital because he gets so worked up > when they are treating him. He looks at me with pain in his eyes, > tears streaming down his face with an expression that says " do something! " > > Six weeks ago, we had a week long break from the casts to heal his > skin, and even though this was going to set us back, we welcomed it. I > realized what I had missed by casting him at two days old. We had > baths together, I kissed his feet obsessively and we played with his toes. > > Four weeks ago, we had a trial run with the boots and bar because the > doctor was concerned about his skin as it was bad right away again. I > struggled for two days with them and he kicked them off about a > jillion times, until I took him back to the hospital and had him > re-casted. The following appointment he had " two week " casts put on > and when I took them off last week I was appalled. I had noticed that > they were getting smelly, but the backs of both knees and the tops of > both feet were raw, weeping, scaly and looked like they had been > burned. I could not believe the smell - it smelled like death. I was > reassured by the doctor that it was okay and we are trying the boots > again. As relieved as I was to make the switch, initially I was not > finding them any less painful in terms of him screaming his head off > when I put them on. One of his heels still isn't really dropped down > enough for the boot and I find that even though I seem to get them on > okay, his feet slip below the marks they made on them for me. It has > been frustrating to say the least. He was very upset the next > morning, crying a lot and that is unusual behaviour for him as he is > generally sunny most of the time. There has been improvement in that > area, but he still kicks them off, his feet slip inside of them and he > has devised a way to kick that loosens the nut on one of the boots! > > Yesterday I went for a follow up and watched as the doctor reefed his > bad (left) foot up to get the number reading she wanted. He was > screaming and I was trying to keep it together. In addition to that, > when I mentioned that I co-sleep with him the doctor started lecturing > me about sleeping in the same bed with him because of the hardware > maybe not allowing him to move under blankets, blah blah blah. I > found myself having to justify my lifestyle to her and I was very > irked. I didn't bother to tell her that when he does sleep in his > crib, he tummy sleeps as I probably would have been criticized for > that too! I feel very often that she talks down to me and on the rare > occasions that my husband accompanies me to the appointments, she will > talk directly to him and over me. This is perhaps because he has a > degree and I don't. > > It has been recommended to me by others in the Clubfoot Canada group > that I go and see the local doctor that practices the Ponseti Method. > My biggest obstacle will be my husband in this endeavour because he > feels the Botox is cutting edge and is happy with the way things are > going (of course he is, he's not there holding down his son while he > screams every week!) I approached him last night about this issue and > he agreed that I could look into it, but what he wants to see is > documentation on this method - and seriously, the more " medical > journal " it is, the better as he understands numbers and statistics > better than testimonials. I presented to him that since I am the one > who is largely dealing with this issue why would it matter which > doctor I took Hayden to if it meant a more gentle treatment for him? > I haven't fully convinced him, but I am determined to stand my ground > on this. > > Please, if anyone can help me, either by directing me to medical > articles, websites or your own stories on this group, I would really > appreciate it! I am feeling very lost and alone, relatively > unsupported (emotionally) by my husband and am just looking for some > " been there " testimonials. Please feel free to email me privately if > you like, because misery sure loves company. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 You can get in to see Dr. Ponseti himself. I don't know for sure what the process is, but usually if someone calls him or emails him and says they want him to treat their child, he will treat that child. The coverage of the brace (bar and shoes) varies from insurance companies. The majority of companies I believe will pay for the shoes and bar when they come together (or a % depending on your plan), but as your child's feet get bigger and you have to buy just shoes, most ins. companies will not cover just the shoes by themselves (I know, it is stupid). If you see a doctor at a Shriner's hospital all the care including shoes and braces are free. If you go to Dr. Ponseti he is likely to recommend the Ponseti- shoes and bar which are a bit expensive but different (like a soft leather sandal, custom made for each child) and made right there in Iowa City. These are being covered more by insurance but (the manufacturer) is unable to do insurance billing so most people submit it themselves. If you go this route, I'm sure someone here can give you more details on how to go about whatever you need to do. Hope this helps. > > How easy, or difficult, is it to get to see Dr. Ponseti himself? > > Also- I was wondering if things such as corrective braces and the shoes > needed are usually covered by insurance. > > > Father to 5/3/04, Austin 9/30/05 BLCF and god's healing hand! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 You can get in to see Dr. Ponseti himself. I don't know for sure what the process is, but usually if someone calls him or emails him and says they want him to treat their child, he will treat that child. The coverage of the brace (bar and shoes) varies from insurance companies. The majority of companies I believe will pay for the shoes and bar when they come together (or a % depending on your plan), but as your child's feet get bigger and you have to buy just shoes, most ins. companies will not cover just the shoes by themselves (I know, it is stupid). If you see a doctor at a Shriner's hospital all the care including shoes and braces are free. If you go to Dr. Ponseti he is likely to recommend the Ponseti- shoes and bar which are a bit expensive but different (like a soft leather sandal, custom made for each child) and made right there in Iowa City. These are being covered more by insurance but (the manufacturer) is unable to do insurance billing so most people submit it themselves. If you go this route, I'm sure someone here can give you more details on how to go about whatever you need to do. Hope this helps. > > How easy, or difficult, is it to get to see Dr. Ponseti himself? > > Also- I was wondering if things such as corrective braces and the shoes > needed are usually covered by insurance. > > > Father to 5/3/04, Austin 9/30/05 BLCF and god's healing hand! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hello , I am sorry that this has been so frustrating for you so far. I don't have any advice like many of these veteran clubfoot mommys as my baby isn't due until Dec 18 (but has a suspected right club foot). I have been trying to find info and read up on Ponseti so that I hopefully go to a qualified doctor. It can be hard to find. I live in Calgary and was just wondering, since you are in Canada, what doctor you are talking about in your post who was treating Hayden? I am seeing a female doctor for a consult in a couple of weeks so I was curious- I may cancel if this is the same one! I really hope you get some answers here. Everyone is very knowledgable and supportive and I pray that Hayden's treatment will go more smoothly and that he'll have excellent results. Take care, Halley > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Re: New - Introduction >Date: Thu, 13 Oct 2005 04:14:33 -0000 > >, >I just don't even know where to start. I want to say most >importantly, and without hesitation - take your child and run, run >far, far away from this doctor. I am both saddened and infuriated by >your story. I am livid to think that this doctor has put your son >through this much misery, pain and suffering, and all the while is >making you think that this is normal. This is not normal. I have >heard of a few small sores and skin yeast infections from casts, but >what you are describing and when you said that it smelled like death, >it just made my skin crawl thinking about what this so called doctor >is putting your son through. I am just so upset I can barely type! >The Ponseti method is a gentle manipulation of the feet that is >scientifically explained in the Global Help Organization booklet >which can be found here: >http://www.global-help.org/publications/cf.2.pdf > >The University of Iowa Hospitals and Clinics support a virtual >hospital website which has pages and pages of documentation and >testimonials. >http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html > >Another website with a myriad of information including links to >medical journal published articles: >http://members.tripod.com/ponseti_links-ivil/ >http://members.tripod.com/ponseti_links-ivil/id1.html >If you need more medical journal articles I will find them for you. > >I will stress again that what your son has endured is NOT normal, nor >necessary and I believe you should never ever EVER return to her >office. > >If you would like to share with us more details about your son's >treatment I would be interested to hear more about these casts, >something that might explain why he has had such horrible skin >problems. I have heard about the botox injections but don't really >know that much about them to give any input on them. I know they are >not part of the Ponseti method, and I don't believe they should be. >There are excellent Ponseti method doctors in Canada, what area are >you in? Since your son has already been casted, probably >incorrectly, I would highly recommend going to one of the best. Even >Dr. Ponseti himself if you choose. > >These doctors listed here are those in Canada who have taken the time >to submit case studies to Dr. Ponseti showing that they are using the >method correctly and with much success. I have heard from many other >parents on the group that Dr. Pirani is one of the best but I believe >all four of these are excellent physicians who will take good care of >your son's feet. > > P. Carey, M.D. >London Health Sciences Centre > Campus-W >London ON N6K 4BC Canada >Tel: >Fax: >Email Dr. Carey > >Dr. son >Queen's University >76 Stuart Street >Kingston, Ontario, Canada K7L 2V7 >Tel: >Fax: >Email Dr. son > >Dr. J. Norgrove Penny, M.D. >P.O. Box 5007 >, B.C., V8R 6N3 Canada >Tel: >Fax: >Email Dr. Penny > >Shafique Pirani, MD >205-245 East Columbia Street >New Westminster >British Columbia >Canada V3L 3W4 >Tel: >Fax: >Email Dr. Pirani > >And finally, if you need just moral support we are here. It sounds >like you may have a tough road with convincing your hubby but we are >here to tell you that you are doing the right thing. You know in >your heart that what has been happening is not right and you will do >what momma's do, and that is to get the best care possible for your >baby. Please take care and give that little baby lots of lovin' from >us, and oh, don't keep putting those shoes on him, his feet are >clearly not fully corrected and the shoes will only hurt him. The >best thing you can do at this point is to give him all the toe >kissing and affection you haven't been able to since he's been in >casts. It doesn't matter if his feet relapse a bit at this point, >honestly, the new doctor will cast him properly and begin anew. And >if your husband balks at this you can tell him that I just attended a >clubfoot symposium in which one of the doctors discussed this very >topic. > >Best wishes, > >Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 16 hrs.) > > > > > > > > > Hi there, I was referred to this group by another (clubfootcanada) >in > > order to obtain some more information about the Pnseti method of > > treating clubfoot. > > > > Hello All, my name is and my son was born on June 19th , >2005 > > with bilateral clubfoot (idiopathic). We were not aware of the > > condition ahead of his birth, so it was a surprise when he came out! > > I was not freaked out, or worried as I knew right away what it was >and > > that it was treatable, although I didn't know how. We consulted with > > Children's Hospital when he was two days old and were told his were > > " moderate to severe " , which according to our Orthopedic Surgeon was > > unusual for idiopathic. We were also told his treatment would be as > > follows: > > > > 8 weeks of casts (once a week) > > Botox injection in each Achilles tendon > > Boots and bar (24/7 until he's able to stand and then night time >until > > he is 4, partnered with special Nu Balance running shoes) > > > > We left with his first set of casts on. He is now almost four months > > old, has had 12 casts and two Botox injections in each calf and > > just last week was put in the boots and bar. > > > > From the beginning he has had a very difficult time with the health >of > > his skin under the casts. His skin has been raw and weeping with >very > > dry and large patches of eczema. He's gained the reputation of being > > the " purple screamer " at the hospital because he gets so worked up > > when they are treating him. He looks at me with pain in his eyes, > > tears streaming down his face with an expression that says " do >something! " > > > > Six weeks ago, we had a week long break from the casts to heal his > > skin, and even though this was going to set us back, we welcomed >it. I > > realized what I had missed by casting him at two days old. We had > > baths together, I kissed his feet obsessively and we played with >his toes. > > > > Four weeks ago, we had a trial run with the boots and bar because >the > > doctor was concerned about his skin as it was bad right away again. >I > > struggled for two days with them and he kicked them off about a > > jillion times, until I took him back to the hospital and had him > > re-casted. The following appointment he had " two week " casts put on > > and when I took them off last week I was appalled. I had noticed >that > > they were getting smelly, but the backs of both knees and the tops >of > > both feet were raw, weeping, scaly and looked like they had been > > burned. I could not believe the smell - it smelled like death. I was > > reassured by the doctor that it was okay and we are trying the boots > > again. As relieved as I was to make the switch, initially I was not > > finding them any less painful in terms of him screaming his head off > > when I put them on. One of his heels still isn't really dropped down > > enough for the boot and I find that even though I seem to get them >on > > okay, his feet slip below the marks they made on them for me. It has > > been frustrating to say the least. He was very upset the next > > morning, crying a lot and that is unusual behaviour for him as he is > > generally sunny most of the time. There has been improvement in >that > > area, but he still kicks them off, his feet slip inside of them and >he > > has devised a way to kick that loosens the nut on one of the boots! > > > > Yesterday I went for a follow up and watched as the doctor reefed >his > > bad (left) foot up to get the number reading she wanted. He was > > screaming and I was trying to keep it together. In addition to >that, > > when I mentioned that I co-sleep with him the doctor started >lecturing > > me about sleeping in the same bed with him because of the hardware > > maybe not allowing him to move under blankets, blah blah blah. I > > found myself having to justify my lifestyle to her and I was very > > irked. I didn't bother to tell her that when he does sleep in his > > crib, he tummy sleeps as I probably would have been criticized for > > that too! I feel very often that she talks down to me and on the >rare > > occasions that my husband accompanies me to the appointments, she >will > > talk directly to him and over me. This is perhaps because he has a > > degree and I don't. > > > > It has been recommended to me by others in the Clubfoot Canada group > > that I go and see the local doctor that practices the Ponseti >Method. > > My biggest obstacle will be my husband in this endeavour because he > > feels the Botox is cutting edge and is happy with the way things are > > going (of course he is, he's not there holding down his son while he > > screams every week!) I approached him last night about this issue >and > > he agreed that I could look into it, but what he wants to see is > > documentation on this method - and seriously, the more " medical > > journal " it is, the better as he understands numbers and statistics > > better than testimonials. I presented to him that since I am the >one > > who is largely dealing with this issue why would it matter which > > doctor I took Hayden to if it meant a more gentle treatment for >him? > > I haven't fully convinced him, but I am determined to stand my >ground > > on this. > > > > Please, if anyone can help me, either by directing me to medical > > articles, websites or your own stories on this group, I would really > > appreciate it! I am feeling very lost and alone, relatively > > unsupported (emotionally) by my husband and am just looking for some > > " been there " testimonials. Please feel free to email me privately >if > > you like, because misery sure loves company. > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.