Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 , Our daughter experienced a lot of buising and dicoloration during our first treatment locally (the tradional method). For the first three months of her life her legs were mostly red and blue after each set of casts came off (those casts that did not fall of by themselves) and I was always concerned that the casts were actually causing her more harm than good. Once we switched to the Ponseti method, those casts were dramatically different. She did not cry or seem to feel pain at all during the castings and everytime we took the casts off on our appointments it revealed her nice white, soft baby skin underneath. My mom was with me when the first set came off to make way for the next manipulation and second set of casts. Now this set was the most uncomfortable for , she didn't cry having them put on, but later that day she was uncomfortable probably because this set of casts moved her feet the most. Only a few hours later though and she was again herself. It was tough at first because we were staying in a hotel for a week during that particular trip so I remember it pretty vividly. From your description of your son's feet, once again I have to say that it sounds like that one foot needs more casting. You need to bring those heals down gently with casting and then if that is not enough, the Ponseti method does the tenotomy. I was so nervous about the tenotomy procedure because it sounded so harsh in a way to me. I can't tell you how relieved I was when the procedure for both of her feet together only took 10-15 minutes and that included the feet and legs being recasted also. For an infant under 1 year, it is similar to getting a shot in the achilles area of the foot. The tendon is so small at that age and it heals very quickly. was in those casts for 3 weeks (a few days after she was already banging them on the couch and floor because they made a funny noise - was 7-8 months old when she got her tenotomy procedure) again, those casts did not bother her either. All of our casting was done during the hot summer months as well, traveling back and forth to Iowa and being one of the " older " babies at the time made for some big, heavy casts. We still did not have any issues in the Ponseti casts with skin problems. I know that all children are different and some with more sensitive skin than others but actually regarding other areas has quite sensitive skin. I think visiting with Dr. Pirani could help you and Hayden a lot. My daughter is 5 1/2 now with beautiful feet and when I think back to all of this I still smile with amazement at what they did for her and how wonderful the treatment went. We actually looked forward to going to Iowa each time. I can not say that about our first 3 months locally after her birth, that was torture, just like you described and I wish I would have know then what I know now. Best of luck with Dr. Pirani! I hope he can help not just Haydens feet, but your piece of mind. ~Holly and (born: 2-11-00 mod. severe bilateral) > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting- type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 , Our daughter experienced a lot of buising and dicoloration during our first treatment locally (the tradional method). For the first three months of her life her legs were mostly red and blue after each set of casts came off (those casts that did not fall of by themselves) and I was always concerned that the casts were actually causing her more harm than good. Once we switched to the Ponseti method, those casts were dramatically different. She did not cry or seem to feel pain at all during the castings and everytime we took the casts off on our appointments it revealed her nice white, soft baby skin underneath. My mom was with me when the first set came off to make way for the next manipulation and second set of casts. Now this set was the most uncomfortable for , she didn't cry having them put on, but later that day she was uncomfortable probably because this set of casts moved her feet the most. Only a few hours later though and she was again herself. It was tough at first because we were staying in a hotel for a week during that particular trip so I remember it pretty vividly. From your description of your son's feet, once again I have to say that it sounds like that one foot needs more casting. You need to bring those heals down gently with casting and then if that is not enough, the Ponseti method does the tenotomy. I was so nervous about the tenotomy procedure because it sounded so harsh in a way to me. I can't tell you how relieved I was when the procedure for both of her feet together only took 10-15 minutes and that included the feet and legs being recasted also. For an infant under 1 year, it is similar to getting a shot in the achilles area of the foot. The tendon is so small at that age and it heals very quickly. was in those casts for 3 weeks (a few days after she was already banging them on the couch and floor because they made a funny noise - was 7-8 months old when she got her tenotomy procedure) again, those casts did not bother her either. All of our casting was done during the hot summer months as well, traveling back and forth to Iowa and being one of the " older " babies at the time made for some big, heavy casts. We still did not have any issues in the Ponseti casts with skin problems. I know that all children are different and some with more sensitive skin than others but actually regarding other areas has quite sensitive skin. I think visiting with Dr. Pirani could help you and Hayden a lot. My daughter is 5 1/2 now with beautiful feet and when I think back to all of this I still smile with amazement at what they did for her and how wonderful the treatment went. We actually looked forward to going to Iowa each time. I can not say that about our first 3 months locally after her birth, that was torture, just like you described and I wish I would have know then what I know now. Best of luck with Dr. Pirani! I hope he can help not just Haydens feet, but your piece of mind. ~Holly and (born: 2-11-00 mod. severe bilateral) > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting- type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 , the problem with fiberglass casts is that the doc cannot form them around the foot as " custom " as a plaster cast, and it's very key that the doc form the cast and hold the foot totally exact as it hardens, smoothing it in where it needs formed to fit like a glove. Like I said before, the bones in the foot have to be placed in a very specific, sequential manner to do any good and held there while casted. It's not a cast just anyone can apply as perhaps a broken-leg cast could be. There shouldn't be any bruising. It should be done slowly and methodically holding the bones exactly as it's done. The FAB (dbb) isn't going to stay on if his foot isn't corrected to begin with. The FAB is NOT to correct a foot but to MAINTAIN correction - big difference! Many docs seem to over look that little fact. Also, prior patients feet might look normal on the out side but that's no proof they will remain normal thorugh out life. Have you spoken to any adult patients or at least teen age/oder kids whove been treated here? What are theire results? The tenotomy is a very minor, one=time deal. My dh stayed in with our 2nd son while he had the tenotomy. It was one little prick in the heel and over with. Ten minutes or so start to finish, numbing the skin, pricking the tendon to release it, then re-casting so the foot would heal in the right position. Wiggling a needs injecting a burning agent sounds like hell to me compared to the tenotomy. My nephew got botox shots for a non-cf condition and he says the pain was unbearable. I still say you should seek alternative treatments because it is taking too long. Your kid should be done by now and moved on to much greener pastures in his treatment by this many weeks in to the deal. My 1st son's doctor really believed in what he was doing too - and had other " happy " patients, but he totally screwed up my kid and I didn't realize it until it was too late. It's not too late for your kid. Thanks to Everyone First off a great big thanks to so many caring and concerned people for all of your responses, support and suggestions, as well as direction to articles, etc. I feel I should clarify a few things so that you can all have a fuller understanding of the issues with Hayden's skin. It is not my intention to bash on Dr. Alvarez because I feel that she truly believes in what she is doing. And she has had success, no doubt about it, as I have seen the older children that she has treated from infancy. They look fine and all of the parents seem to think the Botox is a good idea and that it works. It is not like Hayden has not made progress, either. His feet are worlds different from what they were at birth. I will post some photos so you can see the comparison. My biggest issues have been with her particular bedside manner (blunt) and the fact that Hayden screams so much when she is examining him or when she was holding his foot in position for the casting. When I took the casts off, there were often bruises across the tops of feet from where she had held his foot. This was very disconcerting for me, but I was always told that this was normal. Let me say that this did not offer me much reassurance. No one likes to see their child marked in any way and while I understand that the treatment is going to involve discomfort in some form along the way, it honestly was starting to feel like ritual torture every week. The casts that Hayden had applied were fibreglass with a batting-type underlayer. I do not know what fibre it was, but it appeared to be cotton. The final casts he had were put on with a cotton flannel underlay which actually made his skin worse and was stuck to his skin in many places where it had been weeping. There has been another little girl undergoing the same treatment as Hayden with the same issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 pounds 13 ounces) which made them sweaty and overly warm to start with. We had an unusually hot and humid summer this year that did not help. Having a cast on in that kind of heat must be like wearing three pairs of pants under a snow suit in the Bahamas! Knowing that the other child was enduring the same problems with her skin made me think that this was not an allergic reaction. It was suggested to me that the reason his feet were taking longer to correct was because it was so hot - his feet were swollen and they could not get a proper position each time. The second to last casts we had on were done by another doctor because we were there on a different day and I noticed that he worked very hard to get a " heel " in the cast and took his time. I did see a big difference after that cast came off. That being said, the Club Foot Clinic at Children's is very busy and I know they are trying to see as many people as they can. I'm still feeling very uncertain about the boots and bar. I think they are the Dennis Brown type. I kind of got a " just tough it out " response when I expressed concerns about how well they are fitting him as they continue to slip on his feet or come completely off. He's a real kicker and don't think for a moment he hasn't realized he can free himself if he tries hard enough! I know that some of the fussiness can come from them just not wanting to be in them as they are restrictive. But when I see his foot has slipped and he is cranky, I can't understand how that would be comfortable and don't think that I should be having to replace/adjust them all day long. How can they do their job if they don't fit properly? I have tried the socks without seams and the socks with grips on the bottom and neither seems better than the other. When I look at Hayden's feet in socks, the right foot seems to be be fine, but the left does not fill out the heel. I am interested in meeting with Dr. Pirani. If he decides that Hayden will need more casts, then I am okay with that but it still brings the skin issue along with it. And maybe he will have other suggestions to that end. I am not keen on the idea of a tenotomy, but after thinking about it a bit, I don't think that it is any more or less invasive than the Botox treatment. The Botox consisted of inserting the needle and then moving it all around the tendon and injecting it bit by bit. I suppose if it would help bring the tendon down just that little bit more, then I would agree to it. At any rate, I am glad that I have this group of people to rely on and appreciate all of your kind words! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 , the problem with fiberglass casts is that the doc cannot form them around the foot as " custom " as a plaster cast, and it's very key that the doc form the cast and hold the foot totally exact as it hardens, smoothing it in where it needs formed to fit like a glove. Like I said before, the bones in the foot have to be placed in a very specific, sequential manner to do any good and held there while casted. It's not a cast just anyone can apply as perhaps a broken-leg cast could be. There shouldn't be any bruising. It should be done slowly and methodically holding the bones exactly as it's done. The FAB (dbb) isn't going to stay on if his foot isn't corrected to begin with. The FAB is NOT to correct a foot but to MAINTAIN correction - big difference! Many docs seem to over look that little fact. Also, prior patients feet might look normal on the out side but that's no proof they will remain normal thorugh out life. Have you spoken to any adult patients or at least teen age/oder kids whove been treated here? What are theire results? The tenotomy is a very minor, one=time deal. My dh stayed in with our 2nd son while he had the tenotomy. It was one little prick in the heel and over with. Ten minutes or so start to finish, numbing the skin, pricking the tendon to release it, then re-casting so the foot would heal in the right position. Wiggling a needs injecting a burning agent sounds like hell to me compared to the tenotomy. My nephew got botox shots for a non-cf condition and he says the pain was unbearable. I still say you should seek alternative treatments because it is taking too long. Your kid should be done by now and moved on to much greener pastures in his treatment by this many weeks in to the deal. My 1st son's doctor really believed in what he was doing too - and had other " happy " patients, but he totally screwed up my kid and I didn't realize it until it was too late. It's not too late for your kid. Thanks to Everyone First off a great big thanks to so many caring and concerned people for all of your responses, support and suggestions, as well as direction to articles, etc. I feel I should clarify a few things so that you can all have a fuller understanding of the issues with Hayden's skin. It is not my intention to bash on Dr. Alvarez because I feel that she truly believes in what she is doing. And she has had success, no doubt about it, as I have seen the older children that she has treated from infancy. They look fine and all of the parents seem to think the Botox is a good idea and that it works. It is not like Hayden has not made progress, either. His feet are worlds different from what they were at birth. I will post some photos so you can see the comparison. My biggest issues have been with her particular bedside manner (blunt) and the fact that Hayden screams so much when she is examining him or when she was holding his foot in position for the casting. When I took the casts off, there were often bruises across the tops of feet from where she had held his foot. This was very disconcerting for me, but I was always told that this was normal. Let me say that this did not offer me much reassurance. No one likes to see their child marked in any way and while I understand that the treatment is going to involve discomfort in some form along the way, it honestly was starting to feel like ritual torture every week. The casts that Hayden had applied were fibreglass with a batting-type underlayer. I do not know what fibre it was, but it appeared to be cotton. The final casts he had were put on with a cotton flannel underlay which actually made his skin worse and was stuck to his skin in many places where it had been weeping. There has been another little girl undergoing the same treatment as Hayden with the same issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 pounds 13 ounces) which made them sweaty and overly warm to start with. We had an unusually hot and humid summer this year that did not help. Having a cast on in that kind of heat must be like wearing three pairs of pants under a snow suit in the Bahamas! Knowing that the other child was enduring the same problems with her skin made me think that this was not an allergic reaction. It was suggested to me that the reason his feet were taking longer to correct was because it was so hot - his feet were swollen and they could not get a proper position each time. The second to last casts we had on were done by another doctor because we were there on a different day and I noticed that he worked very hard to get a " heel " in the cast and took his time. I did see a big difference after that cast came off. That being said, the Club Foot Clinic at Children's is very busy and I know they are trying to see as many people as they can. I'm still feeling very uncertain about the boots and bar. I think they are the Dennis Brown type. I kind of got a " just tough it out " response when I expressed concerns about how well they are fitting him as they continue to slip on his feet or come completely off. He's a real kicker and don't think for a moment he hasn't realized he can free himself if he tries hard enough! I know that some of the fussiness can come from them just not wanting to be in them as they are restrictive. But when I see his foot has slipped and he is cranky, I can't understand how that would be comfortable and don't think that I should be having to replace/adjust them all day long. How can they do their job if they don't fit properly? I have tried the socks without seams and the socks with grips on the bottom and neither seems better than the other. When I look at Hayden's feet in socks, the right foot seems to be be fine, but the left does not fill out the heel. I am interested in meeting with Dr. Pirani. If he decides that Hayden will need more casts, then I am okay with that but it still brings the skin issue along with it. And maybe he will have other suggestions to that end. I am not keen on the idea of a tenotomy, but after thinking about it a bit, I don't think that it is any more or less invasive than the Botox treatment. The Botox consisted of inserting the needle and then moving it all around the tendon and injecting it bit by bit. I suppose if it would help bring the tendon down just that little bit more, then I would agree to it. At any rate, I am glad that I have this group of people to rely on and appreciate all of your kind words! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 , I'm glad to hear that you are thinking about going to Dr. Pirani. I think you will notice a world of difference. I can't help but feel that regardless of Dr. Alvarez's success with other patients that she is just not the right doctor for your son's case. It seems, from what you are saying that not only does she not have a good bedside manner when it comes to her contact with you, but she seems dismissive of the fact that your son is in pain. With Ponseti casts the babies often don't even cry; my son did cry a bit but I never felt it was in pain. A traditional Ponseti cast will use a thick cotton under wrap, and then plaster on top. A few of the docs are using fiberglass but not many, the plaster is supposed to be easier to mold. The key thing is that the manipulation of the foot should not hurt, some people have seen bruising of the feet or legs in casts but this is generally from the casts being too tight, either too tight to begin with, or too tight because the child had a growth spurt. I have never heard of a Ponseti doc actually bruising a baby's foot, like I said, it is a gentle manipulation that simply rotates the bones of the foot to bring them back to where they really should be. It is not a wrenching of the foot to get it to a straight position. Ask Dr. Pirani if he can show you the clubfoot model when you go see him, it is a skeletal model that they use for teaching purposes and is really a great way to see how the correction actually happens. As for the casts, it sounds to me as if the casts were definitely too tight, thus the bruising and the swelling, plus the added stress of the not so gentle manipulations the doctor was doing probably added to the swelling. My son was also a 9 pounder and he never had any swelling or problems with his casts. To me, it sounds as if the doctor is trying to rationalize things to you that in all honesty should not be happening. You should also be getting some support as far as the shoes go. This is one area that many doctors practices are lacking in, regardless if they are Ponseti docs or not - there just is not enough support for the parents when the babies go into the shoes. This group is wonderful for that part! If the feet are fully corrected, in fact " over-corrected " , the last cast before going into the shoes should be set at a 70 degree outward rotation. This allows them to be comfortable in the shoes when they are set at this angle. And the reason they should be set to 70 degrees is that you want the foot to have a normal range of motion, that is to be able to abduct (turn out) as much as possible as a non-clubfoot would. His heel should not still be high when he is in the shoes, the heel must sit all the way back and down in the shoe in order for them to stay on and be comfortable. It is essential for the shoes to work properly that they are used simply to maintain fully corrected feet. The shoes are never to be used to try to achieve further correction. Also, you will hear reference to the heel " dropping " , this is usually in regards to the actual heel bone coming all the way down into the padded (fat) part of the heel. This usually does not happen until after they have been walking for a while, but varies from child to child. But the heel itself should be flat to the ground if he is held in an upright weight bearing position if he is fully corrected. , I feel you have really been through a lot with Hayden and I hope that going to see Dr. Pirani you will see a night and day difference in his treatment. I wish you all the best. > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting-type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 , I'm glad to hear that you are thinking about going to Dr. Pirani. I think you will notice a world of difference. I can't help but feel that regardless of Dr. Alvarez's success with other patients that she is just not the right doctor for your son's case. It seems, from what you are saying that not only does she not have a good bedside manner when it comes to her contact with you, but she seems dismissive of the fact that your son is in pain. With Ponseti casts the babies often don't even cry; my son did cry a bit but I never felt it was in pain. A traditional Ponseti cast will use a thick cotton under wrap, and then plaster on top. A few of the docs are using fiberglass but not many, the plaster is supposed to be easier to mold. The key thing is that the manipulation of the foot should not hurt, some people have seen bruising of the feet or legs in casts but this is generally from the casts being too tight, either too tight to begin with, or too tight because the child had a growth spurt. I have never heard of a Ponseti doc actually bruising a baby's foot, like I said, it is a gentle manipulation that simply rotates the bones of the foot to bring them back to where they really should be. It is not a wrenching of the foot to get it to a straight position. Ask Dr. Pirani if he can show you the clubfoot model when you go see him, it is a skeletal model that they use for teaching purposes and is really a great way to see how the correction actually happens. As for the casts, it sounds to me as if the casts were definitely too tight, thus the bruising and the swelling, plus the added stress of the not so gentle manipulations the doctor was doing probably added to the swelling. My son was also a 9 pounder and he never had any swelling or problems with his casts. To me, it sounds as if the doctor is trying to rationalize things to you that in all honesty should not be happening. You should also be getting some support as far as the shoes go. This is one area that many doctors practices are lacking in, regardless if they are Ponseti docs or not - there just is not enough support for the parents when the babies go into the shoes. This group is wonderful for that part! If the feet are fully corrected, in fact " over-corrected " , the last cast before going into the shoes should be set at a 70 degree outward rotation. This allows them to be comfortable in the shoes when they are set at this angle. And the reason they should be set to 70 degrees is that you want the foot to have a normal range of motion, that is to be able to abduct (turn out) as much as possible as a non-clubfoot would. His heel should not still be high when he is in the shoes, the heel must sit all the way back and down in the shoe in order for them to stay on and be comfortable. It is essential for the shoes to work properly that they are used simply to maintain fully corrected feet. The shoes are never to be used to try to achieve further correction. Also, you will hear reference to the heel " dropping " , this is usually in regards to the actual heel bone coming all the way down into the padded (fat) part of the heel. This usually does not happen until after they have been walking for a while, but varies from child to child. But the heel itself should be flat to the ground if he is held in an upright weight bearing position if he is fully corrected. , I feel you have really been through a lot with Hayden and I hope that going to see Dr. Pirani you will see a night and day difference in his treatment. I wish you all the best. > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting-type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 , I too am thrilled to hear that you are considering seeing Dr. Pirani. Our experience with him, as far as the manipulations go, was like night and day! Owen actually laughed and flirted with the cast tech as the manipulations and castings were taking place - a far cry from the screaming that when on during the castings locally. One thing that I did want to point out is that Dr. Pirani uses fiberglass casts. I know that Dr. Ponseti prefers plaster but I think that whatever the treating doctor is comfortable with using is fine. Dr. Pirani's results using fiberglass are beautiful! Daiga and Owen, 02/04/03 Unilateral LCF, FAB 14/7 > > > > First off a great big thanks to so many caring and concerned people > > for all of your responses, support and suggestions, as well as > > direction to articles, etc. > > > > I feel I should clarify a few things so that you can all have a fuller > > understanding of the issues with Hayden's skin. It is not my > > intention to bash on Dr. Alvarez because I feel that she truly > > believes in what she is doing. And she has had success, no doubt > > about it, as I have seen the older children that she has treated from > > infancy. They look fine and all of the parents seem to think the > > Botox is a good idea and that it works. It is not like Hayden has not > > made progress, either. His feet are worlds different from what they > > were at birth. I will post some photos so you can see the comparison. > > My biggest issues have been with her particular bedside manner > > (blunt) and the fact that Hayden screams so much when she is examining > > him or when she was holding his foot in position for the casting. > > When I took the casts off, there were often bruises across the tops of > > feet from where she had held his foot. This was very disconcerting > > for me, but I was always told that this was normal. Let me say that > > this did not offer me much reassurance. No one likes to see their > > child marked in any way and while I understand that the treatment is > > going to involve discomfort in some form along the way, it honestly > > was starting to feel like ritual torture every week. > > > > The casts that Hayden had applied were fibreglass with a batting- type > > underlayer. I do not know what fibre it was, but it appeared to be > > cotton. The final casts he had were put on with a cotton flannel > > underlay which actually made his skin worse and was stuck to his skin > > in many places where it had been weeping. There has been another > > little girl undergoing the same treatment as Hayden with the same > > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > > pounds 13 ounces) which made them sweaty and overly warm to start > > with. We had an unusually hot and humid summer this year that did not > > help. Having a cast on in that kind of heat must be like wearing > > three pairs of pants under a snow suit in the Bahamas! Knowing that > > the other child was enduring the same problems with her skin made me > > think that this was not an allergic reaction. It was suggested to me > > that the reason his feet were taking longer to correct was because it > > was so hot - his feet were swollen and they could not get a proper > > position each time. The second to last casts we had on were done by > > another doctor because we were there on a different day and I noticed > > that he worked very hard to get a " heel " in the cast and took his > > time. I did see a big difference after that cast came off. That > > being said, the Club Foot Clinic at Children's is very busy and I know > > they are trying to see as many people as they can. > > > > I'm still feeling very uncertain about the boots and bar. I think > > they are the Dennis Brown type. I kind of got a " just tough it out " > > response when I expressed concerns about how well they are fitting him > > as they continue to slip on his feet or come completely off. He's a > > real kicker and don't think for a moment he hasn't realized he can > > free himself if he tries hard enough! I know that some of the > > fussiness can come from them just not wanting to be in them as they > > are restrictive. But when I see his foot has slipped and he is > > cranky, I can't understand how that would be comfortable and don't > > think that I should be having to replace/adjust them all day long. > > How can they do their job if they don't fit properly? I have tried > > the socks without seams and the socks with grips on the bottom and > > neither seems better than the other. When I look at Hayden's feet in > > socks, the right foot seems to be be fine, but the left does not fill > > out the heel. > > > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > > will need more casts, then I am okay with that but it still brings the > > skin issue along with it. And maybe he will have other suggestions to > > that end. I am not keen on the idea of a tenotomy, but after thinking > > about it a bit, I don't think that it is any more or less invasive > > than the Botox treatment. The Botox consisted of inserting the needle > > and then moving it all around the tendon and injecting it bit by bit. > > I suppose if it would help bring the tendon down just that little bit > > more, then I would agree to it. > > > > At any rate, I am glad that I have this group of people to rely on and > > appreciate all of your kind words! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 , I too am thrilled to hear that you are considering seeing Dr. Pirani. Our experience with him, as far as the manipulations go, was like night and day! Owen actually laughed and flirted with the cast tech as the manipulations and castings were taking place - a far cry from the screaming that when on during the castings locally. One thing that I did want to point out is that Dr. Pirani uses fiberglass casts. I know that Dr. Ponseti prefers plaster but I think that whatever the treating doctor is comfortable with using is fine. Dr. Pirani's results using fiberglass are beautiful! Daiga and Owen, 02/04/03 Unilateral LCF, FAB 14/7 > > > > First off a great big thanks to so many caring and concerned people > > for all of your responses, support and suggestions, as well as > > direction to articles, etc. > > > > I feel I should clarify a few things so that you can all have a fuller > > understanding of the issues with Hayden's skin. It is not my > > intention to bash on Dr. Alvarez because I feel that she truly > > believes in what she is doing. And she has had success, no doubt > > about it, as I have seen the older children that she has treated from > > infancy. They look fine and all of the parents seem to think the > > Botox is a good idea and that it works. It is not like Hayden has not > > made progress, either. His feet are worlds different from what they > > were at birth. I will post some photos so you can see the comparison. > > My biggest issues have been with her particular bedside manner > > (blunt) and the fact that Hayden screams so much when she is examining > > him or when she was holding his foot in position for the casting. > > When I took the casts off, there were often bruises across the tops of > > feet from where she had held his foot. This was very disconcerting > > for me, but I was always told that this was normal. Let me say that > > this did not offer me much reassurance. No one likes to see their > > child marked in any way and while I understand that the treatment is > > going to involve discomfort in some form along the way, it honestly > > was starting to feel like ritual torture every week. > > > > The casts that Hayden had applied were fibreglass with a batting- type > > underlayer. I do not know what fibre it was, but it appeared to be > > cotton. The final casts he had were put on with a cotton flannel > > underlay which actually made his skin worse and was stuck to his skin > > in many places where it had been weeping. There has been another > > little girl undergoing the same treatment as Hayden with the same > > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > > pounds 13 ounces) which made them sweaty and overly warm to start > > with. We had an unusually hot and humid summer this year that did not > > help. Having a cast on in that kind of heat must be like wearing > > three pairs of pants under a snow suit in the Bahamas! Knowing that > > the other child was enduring the same problems with her skin made me > > think that this was not an allergic reaction. It was suggested to me > > that the reason his feet were taking longer to correct was because it > > was so hot - his feet were swollen and they could not get a proper > > position each time. The second to last casts we had on were done by > > another doctor because we were there on a different day and I noticed > > that he worked very hard to get a " heel " in the cast and took his > > time. I did see a big difference after that cast came off. That > > being said, the Club Foot Clinic at Children's is very busy and I know > > they are trying to see as many people as they can. > > > > I'm still feeling very uncertain about the boots and bar. I think > > they are the Dennis Brown type. I kind of got a " just tough it out " > > response when I expressed concerns about how well they are fitting him > > as they continue to slip on his feet or come completely off. He's a > > real kicker and don't think for a moment he hasn't realized he can > > free himself if he tries hard enough! I know that some of the > > fussiness can come from them just not wanting to be in them as they > > are restrictive. But when I see his foot has slipped and he is > > cranky, I can't understand how that would be comfortable and don't > > think that I should be having to replace/adjust them all day long. > > How can they do their job if they don't fit properly? I have tried > > the socks without seams and the socks with grips on the bottom and > > neither seems better than the other. When I look at Hayden's feet in > > socks, the right foot seems to be be fine, but the left does not fill > > out the heel. > > > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > > will need more casts, then I am okay with that but it still brings the > > skin issue along with it. And maybe he will have other suggestions to > > that end. I am not keen on the idea of a tenotomy, but after thinking > > about it a bit, I don't think that it is any more or less invasive > > than the Botox treatment. The Botox consisted of inserting the needle > > and then moving it all around the tendon and injecting it bit by bit. > > I suppose if it would help bring the tendon down just that little bit > > more, then I would agree to it. > > > > At any rate, I am glad that I have this group of people to rely on and > > appreciate all of your kind words! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 I wonder if Dr. Pirani might use plaster knowing the problems they had with the casts Hayden had (which were fiberglass)? I will be interested to see what he tries, and how the casts work out for Hayden this time (assuming that he does need to be re-casted). > > > > > > First off a great big thanks to so many caring and concerned > people > > > for all of your responses, support and suggestions, as well as > > > direction to articles, etc. > > > > > > I feel I should clarify a few things so that you can all have a > fuller > > > understanding of the issues with Hayden's skin. It is not my > > > intention to bash on Dr. Alvarez because I feel that she truly > > > believes in what she is doing. And she has had success, no doubt > > > about it, as I have seen the older children that she has treated > from > > > infancy. They look fine and all of the parents seem to think the > > > Botox is a good idea and that it works. It is not like Hayden > has not > > > made progress, either. His feet are worlds different from what > they > > > were at birth. I will post some photos so you can see the > comparison. > > > My biggest issues have been with her particular bedside manner > > > (blunt) and the fact that Hayden screams so much when she is > examining > > > him or when she was holding his foot in position for the casting. > > > When I took the casts off, there were often bruises across the > tops of > > > feet from where she had held his foot. This was very > disconcerting > > > for me, but I was always told that this was normal. Let me say > that > > > this did not offer me much reassurance. No one likes to see their > > > child marked in any way and while I understand that the treatment > is > > > going to involve discomfort in some form along the way, it > honestly > > > was starting to feel like ritual torture every week. > > > > > > The casts that Hayden had applied were fibreglass with a batting- > type > > > underlayer. I do not know what fibre it was, but it appeared to > be > > > cotton. The final casts he had were put on with a cotton flannel > > > underlay which actually made his skin worse and was stuck to his > skin > > > in many places where it had been weeping. There has been another > > > little girl undergoing the same treatment as Hayden with the same > > > issues. Both babies were large at birth (Hayden 9 pounds, Baby > Girl 9 > > > pounds 13 ounces) which made them sweaty and overly warm to start > > > with. We had an unusually hot and humid summer this year that > did not > > > help. Having a cast on in that kind of heat must be like wearing > > > three pairs of pants under a snow suit in the Bahamas! Knowing > that > > > the other child was enduring the same problems with her skin made > me > > > think that this was not an allergic reaction. It was suggested > to me > > > that the reason his feet were taking longer to correct was > because it > > > was so hot - his feet were swollen and they could not get a proper > > > position each time. The second to last casts we had on were done > by > > > another doctor because we were there on a different day and I > noticed > > > that he worked very hard to get a " heel " in the cast and took his > > > time. I did see a big difference after that cast came off. That > > > being said, the Club Foot Clinic at Children's is very busy and I > know > > > they are trying to see as many people as they can. > > > > > > I'm still feeling very uncertain about the boots and bar. I think > > > they are the Dennis Brown type. I kind of got a " just tough it > out " > > > response when I expressed concerns about how well they are > fitting him > > > as they continue to slip on his feet or come completely off. > He's a > > > real kicker and don't think for a moment he hasn't realized he can > > > free himself if he tries hard enough! I know that some of the > > > fussiness can come from them just not wanting to be in them as > they > > > are restrictive. But when I see his foot has slipped and he is > > > cranky, I can't understand how that would be comfortable and don't > > > think that I should be having to replace/adjust them all day > long. > > > How can they do their job if they don't fit properly? I have > tried > > > the socks without seams and the socks with grips on the bottom and > > > neither seems better than the other. When I look at Hayden's > feet in > > > socks, the right foot seems to be be fine, but the left does not > fill > > > out the heel. > > > > > > I am interested in meeting with Dr. Pirani. If he decides that > Hayden > > > will need more casts, then I am okay with that but it still > brings the > > > skin issue along with it. And maybe he will have other > suggestions to > > > that end. I am not keen on the idea of a tenotomy, but after > thinking > > > about it a bit, I don't think that it is any more or less invasive > > > than the Botox treatment. The Botox consisted of inserting the > needle > > > and then moving it all around the tendon and injecting it bit by > bit. > > > I suppose if it would help bring the tendon down just that > little bit > > > more, then I would agree to it. > > > > > > At any rate, I am glad that I have this group of people to rely > on and > > > appreciate all of your kind words! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 I wonder if Dr. Pirani might use plaster knowing the problems they had with the casts Hayden had (which were fiberglass)? I will be interested to see what he tries, and how the casts work out for Hayden this time (assuming that he does need to be re-casted). > > > > > > First off a great big thanks to so many caring and concerned > people > > > for all of your responses, support and suggestions, as well as > > > direction to articles, etc. > > > > > > I feel I should clarify a few things so that you can all have a > fuller > > > understanding of the issues with Hayden's skin. It is not my > > > intention to bash on Dr. Alvarez because I feel that she truly > > > believes in what she is doing. And she has had success, no doubt > > > about it, as I have seen the older children that she has treated > from > > > infancy. They look fine and all of the parents seem to think the > > > Botox is a good idea and that it works. It is not like Hayden > has not > > > made progress, either. His feet are worlds different from what > they > > > were at birth. I will post some photos so you can see the > comparison. > > > My biggest issues have been with her particular bedside manner > > > (blunt) and the fact that Hayden screams so much when she is > examining > > > him or when she was holding his foot in position for the casting. > > > When I took the casts off, there were often bruises across the > tops of > > > feet from where she had held his foot. This was very > disconcerting > > > for me, but I was always told that this was normal. Let me say > that > > > this did not offer me much reassurance. No one likes to see their > > > child marked in any way and while I understand that the treatment > is > > > going to involve discomfort in some form along the way, it > honestly > > > was starting to feel like ritual torture every week. > > > > > > The casts that Hayden had applied were fibreglass with a batting- > type > > > underlayer. I do not know what fibre it was, but it appeared to > be > > > cotton. The final casts he had were put on with a cotton flannel > > > underlay which actually made his skin worse and was stuck to his > skin > > > in many places where it had been weeping. There has been another > > > little girl undergoing the same treatment as Hayden with the same > > > issues. Both babies were large at birth (Hayden 9 pounds, Baby > Girl 9 > > > pounds 13 ounces) which made them sweaty and overly warm to start > > > with. We had an unusually hot and humid summer this year that > did not > > > help. Having a cast on in that kind of heat must be like wearing > > > three pairs of pants under a snow suit in the Bahamas! Knowing > that > > > the other child was enduring the same problems with her skin made > me > > > think that this was not an allergic reaction. It was suggested > to me > > > that the reason his feet were taking longer to correct was > because it > > > was so hot - his feet were swollen and they could not get a proper > > > position each time. The second to last casts we had on were done > by > > > another doctor because we were there on a different day and I > noticed > > > that he worked very hard to get a " heel " in the cast and took his > > > time. I did see a big difference after that cast came off. That > > > being said, the Club Foot Clinic at Children's is very busy and I > know > > > they are trying to see as many people as they can. > > > > > > I'm still feeling very uncertain about the boots and bar. I think > > > they are the Dennis Brown type. I kind of got a " just tough it > out " > > > response when I expressed concerns about how well they are > fitting him > > > as they continue to slip on his feet or come completely off. > He's a > > > real kicker and don't think for a moment he hasn't realized he can > > > free himself if he tries hard enough! I know that some of the > > > fussiness can come from them just not wanting to be in them as > they > > > are restrictive. But when I see his foot has slipped and he is > > > cranky, I can't understand how that would be comfortable and don't > > > think that I should be having to replace/adjust them all day > long. > > > How can they do their job if they don't fit properly? I have > tried > > > the socks without seams and the socks with grips on the bottom and > > > neither seems better than the other. When I look at Hayden's > feet in > > > socks, the right foot seems to be be fine, but the left does not > fill > > > out the heel. > > > > > > I am interested in meeting with Dr. Pirani. If he decides that > Hayden > > > will need more casts, then I am okay with that but it still > brings the > > > skin issue along with it. And maybe he will have other > suggestions to > > > that end. I am not keen on the idea of a tenotomy, but after > thinking > > > about it a bit, I don't think that it is any more or less invasive > > > than the Botox treatment. The Botox consisted of inserting the > needle > > > and then moving it all around the tendon and injecting it bit by > bit. > > > I suppose if it would help bring the tendon down just that > little bit > > > more, then I would agree to it. > > > > > > At any rate, I am glad that I have this group of people to rely > on and > > > appreciate all of your kind words! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 OK, I need to interject here... Dr. Pirani uses fiberglass casting mainly because of his belief that treatment for club foot requires the bare minimum of medical equipment. This comes from his work in third world contries specifically the Ugandan Project. But he also says that he finds it easier to get the bones to just where he wants them to be while binding the foot with the fiberglass and it also hardens very quickly and is much more lightweight than a plaster cast! He has Dr. Ponseti's full blessing and receives excellent results!!! Dr. Pirani's sucess rates are above 95% with these fiberglass casts and to generalize and say that a doc cannot form them as well as plaster is not right. Let's be clear here, Dr. Alvarez is not casting properly. Not suprising when you look at how she goes about the rest of her treatment! Lumping fiberglass casting in with bad treatment is not a good idea because it is not true. & Grace > > , the problem with fiberglass casts is that the doc cannot form them around the foot as " custom " as a plaster cast, and it's very key that the doc form the cast and hold the foot totally exact as it hardens, smoothing it in where it needs formed to fit like a glove. Like I said before, the bones in the foot have to be placed in a very specific, sequential manner to do any good and held there while casted. It's not a cast just anyone can apply as perhaps a broken-leg cast could be. There shouldn't be any bruising. It should be done slowly and methodically holding the bones exactly as it's done. > > The FAB (dbb) isn't going to stay on if his foot isn't corrected to begin with. The FAB is NOT to correct a foot but to MAINTAIN correction - big difference! Many docs seem to over look that little fact. > > Also, prior patients feet might look normal on the out side but that's no proof they will remain normal thorugh out life. Have you spoken to any adult patients or at least teen age/oder kids whove been treated here? What are theire results? > > The tenotomy is a very minor, one=time deal. My dh stayed in with our 2nd son while he had the tenotomy. It was one little prick in the heel and over with. Ten minutes or so start to finish, numbing the skin, pricking the tendon to release it, then re-casting so the foot would heal in the right position. Wiggling a needs injecting a burning agent sounds like hell to me compared to the tenotomy. My nephew got botox shots for a non-cf condition and he says the pain was unbearable. > > I still say you should seek alternative treatments because it is taking too long. Your kid should be done by now and moved on to much greener pastures in his treatment by this many weeks in to the deal. My 1st son's doctor really believed in what he was doing too - and had other " happy " patients, but he totally screwed up my kid and I didn't realize it until it was too late. It's not too late for your kid. > Thanks to Everyone > > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting- type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 OK, I need to interject here... Dr. Pirani uses fiberglass casting mainly because of his belief that treatment for club foot requires the bare minimum of medical equipment. This comes from his work in third world contries specifically the Ugandan Project. But he also says that he finds it easier to get the bones to just where he wants them to be while binding the foot with the fiberglass and it also hardens very quickly and is much more lightweight than a plaster cast! He has Dr. Ponseti's full blessing and receives excellent results!!! Dr. Pirani's sucess rates are above 95% with these fiberglass casts and to generalize and say that a doc cannot form them as well as plaster is not right. Let's be clear here, Dr. Alvarez is not casting properly. Not suprising when you look at how she goes about the rest of her treatment! Lumping fiberglass casting in with bad treatment is not a good idea because it is not true. & Grace > > , the problem with fiberglass casts is that the doc cannot form them around the foot as " custom " as a plaster cast, and it's very key that the doc form the cast and hold the foot totally exact as it hardens, smoothing it in where it needs formed to fit like a glove. Like I said before, the bones in the foot have to be placed in a very specific, sequential manner to do any good and held there while casted. It's not a cast just anyone can apply as perhaps a broken-leg cast could be. There shouldn't be any bruising. It should be done slowly and methodically holding the bones exactly as it's done. > > The FAB (dbb) isn't going to stay on if his foot isn't corrected to begin with. The FAB is NOT to correct a foot but to MAINTAIN correction - big difference! Many docs seem to over look that little fact. > > Also, prior patients feet might look normal on the out side but that's no proof they will remain normal thorugh out life. Have you spoken to any adult patients or at least teen age/oder kids whove been treated here? What are theire results? > > The tenotomy is a very minor, one=time deal. My dh stayed in with our 2nd son while he had the tenotomy. It was one little prick in the heel and over with. Ten minutes or so start to finish, numbing the skin, pricking the tendon to release it, then re-casting so the foot would heal in the right position. Wiggling a needs injecting a burning agent sounds like hell to me compared to the tenotomy. My nephew got botox shots for a non-cf condition and he says the pain was unbearable. > > I still say you should seek alternative treatments because it is taking too long. Your kid should be done by now and moved on to much greener pastures in his treatment by this many weeks in to the deal. My 1st son's doctor really believed in what he was doing too - and had other " happy " patients, but he totally screwed up my kid and I didn't realize it until it was too late. It's not too late for your kid. > Thanks to Everyone > > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting- type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 I am not sure if either type of casts would be more beneficial than the other. I suspect that he has sensitive skin and it just may be something we have to endure to get his feet right. I look at his feet and they are nowhere near overcorrected and I can tell his left one wants to still turn back in. He does something funny that I have never seen an infant do - when he lies on his back, he bends his knees up and tries to put his feet flat on the bed, etc. like he is going to do sit-ups or something. His right foot sits flat and he tries to do the same with the left - but it ends up resting more on the outer edge or the toes, which indicates to me that this foot is not ready to be out of casts. When I have the DBB on, he will periodically burst into tears and I will check them and see they have slipped again. I have been taking them off more than I should probably, but it's not likely they are helping him at this point anyway. I am trying to imagine what it might feel like to have a very tight shoe half on my foot and then a bar weighing it down. Whatever headway I made with my dh the other day was undone with an argument last night. I told him I was very frustrated with the DBB and thought I should just go and get his feet checked by Dr. Pirani. He thinks I should go to the orthotics shop that supplied the shoes and get their help. I am not interested in doing this after the way Hayden screamed both the times the orthotist put the boots on. And sure, they might get them on right, but the first time I take them off or they slip again, I'm back to square one aren't I? He thinks I am not giving this enough of a chance because it's only been ten days. But this is ten days that could have been put to use further correcting his feet the right way. I just want my baby fixed, I don't want this to drag on forever and the more I listen to all of you, the more convinced I am that I MUST take him elsewhere. I am considering emailing Dr. Ponseti to get his advice at the very least and then also going to Dr. Pirani. I took some pictures of Hayden's little feet and am going to upload them to the Photos section. Some of the photos aren't that good because my oldest daughter was taking them and I wasn't directing her properly. Once again thanks for the care and concern. I just want my baby whole and happy so that I can enjoy his infancy and not have nightmares about it. I want to tell him how joyful his infancy was, not how difficult. --- wrote: --------------------------------- OK, I need to interject here... Dr. Pirani uses fiberglass casting mainly because of his belief that treatment for club foot requires the bare minimum of medical equipment. This comes from his work in third world contries specifically the Ugandan Project. But he also says that he finds it easier to get the bones to just where he wants them to be while binding the foot with the fiberglass and it also hardens very quickly and is much more lightweight than a plaster cast! He has Dr. Ponseti's full blessing and receives excellent results!!! Dr. Pirani's sucess rates are above 95% with these fiberglass casts and to generalize and say that a doc cannot form them as well as plaster is not right. Let's be clear here, Dr. Alvarez is not casting properly. Not suprising when you look at how she goes about the rest of her treatment! Lumping fiberglass casting in with bad treatment is not a good idea because it is not true. & Grace > > , the problem with fiberglass casts is that the doc cannot form them around the foot as " custom " as a plaster cast, and it's very key that the doc form the cast and hold the foot totally exact as it hardens, smoothing it in where it needs formed to fit like a glove. Like I said before, the bones in the foot have to be placed in a very specific, sequential manner to do any good and held there while casted. It's not a cast just anyone can apply as perhaps a broken-leg cast could be. There shouldn't be any bruising. It should be done slowly and methodically holding the bones exactly as it's done. > > The FAB (dbb) isn't going to stay on if his foot isn't corrected to begin with. The FAB is NOT to correct a foot but to MAINTAIN correction - big difference! Many docs seem to over look that little fact. > > Also, prior patients feet might look normal on the out side but that's no proof they will remain normal thorugh out life. Have you spoken to any adult patients or at least teen age/oder kids whove been treated here? What are theire results? > > The tenotomy is a very minor, one=time deal. My dh stayed in with our 2nd son while he had the tenotomy. It was one little prick in the heel and over with. Ten minutes or so start to finish, numbing the skin, pricking the tendon to release it, then re-casting so the foot would heal in the right position. Wiggling a needs injecting a burning agent sounds like hell to me compared to the tenotomy. My nephew got botox shots for a non-cf condition and he says the pain was unbearable. > > I still say you should seek alternative treatments because it is taking too long. Your kid should be done by now and moved on to much greener pastures in his treatment by this many weeks in to the deal. My 1st son's doctor really believed in what he was doing too - and had other " happy " patients, but he totally screwed up my kid and I didn't realize it until it was too late. It's not too late for your kid. > Thanks to Everyone > > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting- type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 I am not sure if either type of casts would be more beneficial than the other. I suspect that he has sensitive skin and it just may be something we have to endure to get his feet right. I look at his feet and they are nowhere near overcorrected and I can tell his left one wants to still turn back in. He does something funny that I have never seen an infant do - when he lies on his back, he bends his knees up and tries to put his feet flat on the bed, etc. like he is going to do sit-ups or something. His right foot sits flat and he tries to do the same with the left - but it ends up resting more on the outer edge or the toes, which indicates to me that this foot is not ready to be out of casts. When I have the DBB on, he will periodically burst into tears and I will check them and see they have slipped again. I have been taking them off more than I should probably, but it's not likely they are helping him at this point anyway. I am trying to imagine what it might feel like to have a very tight shoe half on my foot and then a bar weighing it down. Whatever headway I made with my dh the other day was undone with an argument last night. I told him I was very frustrated with the DBB and thought I should just go and get his feet checked by Dr. Pirani. He thinks I should go to the orthotics shop that supplied the shoes and get their help. I am not interested in doing this after the way Hayden screamed both the times the orthotist put the boots on. And sure, they might get them on right, but the first time I take them off or they slip again, I'm back to square one aren't I? He thinks I am not giving this enough of a chance because it's only been ten days. But this is ten days that could have been put to use further correcting his feet the right way. I just want my baby fixed, I don't want this to drag on forever and the more I listen to all of you, the more convinced I am that I MUST take him elsewhere. I am considering emailing Dr. Ponseti to get his advice at the very least and then also going to Dr. Pirani. I took some pictures of Hayden's little feet and am going to upload them to the Photos section. Some of the photos aren't that good because my oldest daughter was taking them and I wasn't directing her properly. Once again thanks for the care and concern. I just want my baby whole and happy so that I can enjoy his infancy and not have nightmares about it. I want to tell him how joyful his infancy was, not how difficult. --- wrote: --------------------------------- OK, I need to interject here... Dr. Pirani uses fiberglass casting mainly because of his belief that treatment for club foot requires the bare minimum of medical equipment. This comes from his work in third world contries specifically the Ugandan Project. But he also says that he finds it easier to get the bones to just where he wants them to be while binding the foot with the fiberglass and it also hardens very quickly and is much more lightweight than a plaster cast! He has Dr. Ponseti's full blessing and receives excellent results!!! Dr. Pirani's sucess rates are above 95% with these fiberglass casts and to generalize and say that a doc cannot form them as well as plaster is not right. Let's be clear here, Dr. Alvarez is not casting properly. Not suprising when you look at how she goes about the rest of her treatment! Lumping fiberglass casting in with bad treatment is not a good idea because it is not true. & Grace > > , the problem with fiberglass casts is that the doc cannot form them around the foot as " custom " as a plaster cast, and it's very key that the doc form the cast and hold the foot totally exact as it hardens, smoothing it in where it needs formed to fit like a glove. Like I said before, the bones in the foot have to be placed in a very specific, sequential manner to do any good and held there while casted. It's not a cast just anyone can apply as perhaps a broken-leg cast could be. There shouldn't be any bruising. It should be done slowly and methodically holding the bones exactly as it's done. > > The FAB (dbb) isn't going to stay on if his foot isn't corrected to begin with. The FAB is NOT to correct a foot but to MAINTAIN correction - big difference! Many docs seem to over look that little fact. > > Also, prior patients feet might look normal on the out side but that's no proof they will remain normal thorugh out life. Have you spoken to any adult patients or at least teen age/oder kids whove been treated here? What are theire results? > > The tenotomy is a very minor, one=time deal. My dh stayed in with our 2nd son while he had the tenotomy. It was one little prick in the heel and over with. Ten minutes or so start to finish, numbing the skin, pricking the tendon to release it, then re-casting so the foot would heal in the right position. Wiggling a needs injecting a burning agent sounds like hell to me compared to the tenotomy. My nephew got botox shots for a non-cf condition and he says the pain was unbearable. > > I still say you should seek alternative treatments because it is taking too long. Your kid should be done by now and moved on to much greener pastures in his treatment by this many weeks in to the deal. My 1st son's doctor really believed in what he was doing too - and had other " happy " patients, but he totally screwed up my kid and I didn't realize it until it was too late. It's not too late for your kid. > Thanks to Everyone > > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting- type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 Hi No it doesn't sound to me like his feet are corrected yet, which is probably why his FAB is slipping and causing discomfort. I wouldn't go back to the orthotist either, they should have picked up that there were problems instead of telling you to 'tough it out'. Wearing the FAB is not usually a painful or unpleasant experience and if it is there are things that can solve it - like correcting the feet, fitting the shoes properly. also had an awful experience with his first doctor before he went to Dr Ponseti, and that doctor also had no bedside manner. He always made me feel stupid and emotional, every time I asked if it wasn't hurting as he wrenched his feet (and would almost stop breathing he would scream so much), he would tell me that it doesn't hurt. I was always so upset afterwards and I dreaded going there. That doctor would make me grip 's knee with my finger and thumb of one hand and pull really heard on his big toe with the other as he wrenched his foot 'straight' in the casts. Not easy at the best of times and worse with an 8-day old and after a Caesar delivery, it was just awful, I always felt nauseous and faint during the treatment. was an easy going baby and I just knew there was something wrong, but it took me a while to build up my confidence to argue with the doctor, go on the internet and find Dr Ponseti. After that it was all so much easier. I think you'll find that just one email to Dr Ponseti or one call to Dr Pirani will make you feel so much better. My husband is also the type to stick with the doctor says, they know best, blah, blah. But he quickly converted to Ponseti once he had read up more and what convinced him the most was the call to Dr Pirani that he made from South Africa. Dr Pirani spoke to him for over an hour and after that he was just ready to catch a plane and get the Ponseti treatment. Keep going, it's been a tough road for all of you to travel, but you're at a place now where you can find help and the doctors who will treat your little baby's feet with gentleness and care. I wish you and your family the best. www.clubfoot.co.za Moss Steps Charity www.steps.org.za Re: Re: Thanks to Everyone I am not sure if either type of casts would be more beneficial than the other. I suspect that he has sensitive skin and it just may be something we have to endure to get his feet right. I look at his feet and they are nowhere near overcorrected and I can tell his left one wants to still turn back in. He does something funny that I have never seen an infant do - when he lies on his back, he bends his knees up and tries to put his feet flat on the bed, etc. like he is going to do sit-ups or something. His right foot sits flat and he tries to do the same with the left - but it ends up resting more on the outer edge or the toes, which indicates to me that this foot is not ready to be out of casts. When I have the DBB on, he will periodically burst into tears and I will check them and see they have slipped again. I have been taking them off more than I should probably, but it's not likely they are helping him at this point anyway. I am trying to imagine what it might feel like to have a very tight shoe half on my foot and then a bar weighing it down. Whatever headway I made with my dh the other day was undone with an argument last night. I told him I was very frustrated with the DBB and thought I should just go and get his feet checked by Dr. Pirani. He thinks I should go to the orthotics shop that supplied the shoes and get their help. I am not interested in doing this after the way Hayden screamed both the times the orthotist put the boots on. And sure, they might get them on right, but the first time I take them off or they slip again, I'm back to square one aren't I? He thinks I am not giving this enough of a chance because it's only been ten days. But this is ten days that could have been put to use further correcting his feet the right way. I just want my baby fixed, I don't want this to drag on forever and the more I listen to all of you, the more convinced I am that I MUST take him elsewhere. I am considering emailing Dr. Ponseti to get his advice at the very least and then also going to Dr. Pirani. I took some pictures of Hayden's little feet and am going to upload them to the Photos section. Some of the photos aren't that good because my oldest daughter was taking them and I wasn't directing her properly. Once again thanks for the care and concern. I just want my baby whole and happy so that I can enjoy his infancy and not have nightmares about it. I want to tell him how joyful his infancy was, not how difficult. --- wrote: --------------------------------- OK, I need to interject here... Dr. Pirani uses fiberglass casting mainly because of his belief that treatment for club foot requires the bare minimum of medical equipment. This comes from his work in third world contries specifically the Ugandan Project. But he also says that he finds it easier to get the bones to just where he wants them to be while binding the foot with the fiberglass and it also hardens very quickly and is much more lightweight than a plaster cast! He has Dr. Ponseti's full blessing and receives excellent results!!! Dr. Pirani's sucess rates are above 95% with these fiberglass casts and to generalize and say that a doc cannot form them as well as plaster is not right. Let's be clear here, Dr. Alvarez is not casting properly. Not suprising when you look at how she goes about the rest of her treatment! Lumping fiberglass casting in with bad treatment is not a good idea because it is not true. & Grace > > , the problem with fiberglass casts is that the doc cannot form them around the foot as " custom " as a plaster cast, and it's very key that the doc form the cast and hold the foot totally exact as it hardens, smoothing it in where it needs formed to fit like a glove. Like I said before, the bones in the foot have to be placed in a very specific, sequential manner to do any good and held there while casted. It's not a cast just anyone can apply as perhaps a broken-leg cast could be. There shouldn't be any bruising. It should be done slowly and methodically holding the bones exactly as it's done. > > The FAB (dbb) isn't going to stay on if his foot isn't corrected to begin with. The FAB is NOT to correct a foot but to MAINTAIN correction - big difference! Many docs seem to over look that little fact. > > Also, prior patients feet might look normal on the out side but that's no proof they will remain normal thorugh out life. Have you spoken to any adult patients or at least teen age/oder kids whove been treated here? What are theire results? > > The tenotomy is a very minor, one=time deal. My dh stayed in with our 2nd son while he had the tenotomy. It was one little prick in the heel and over with. Ten minutes or so start to finish, numbing the skin, pricking the tendon to release it, then re-casting so the foot would heal in the right position. Wiggling a needs injecting a burning agent sounds like hell to me compared to the tenotomy. My nephew got botox shots for a non-cf condition and he says the pain was unbearable. > > I still say you should seek alternative treatments because it is taking too long. Your kid should be done by now and moved on to much greener pastures in his treatment by this many weeks in to the deal. My 1st son's doctor really believed in what he was doing too - and had other " happy " patients, but he totally screwed up my kid and I didn't realize it until it was too late. It's not too late for your kid. > Thanks to Everyone > > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting- type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 Hi No it doesn't sound to me like his feet are corrected yet, which is probably why his FAB is slipping and causing discomfort. I wouldn't go back to the orthotist either, they should have picked up that there were problems instead of telling you to 'tough it out'. Wearing the FAB is not usually a painful or unpleasant experience and if it is there are things that can solve it - like correcting the feet, fitting the shoes properly. also had an awful experience with his first doctor before he went to Dr Ponseti, and that doctor also had no bedside manner. He always made me feel stupid and emotional, every time I asked if it wasn't hurting as he wrenched his feet (and would almost stop breathing he would scream so much), he would tell me that it doesn't hurt. I was always so upset afterwards and I dreaded going there. That doctor would make me grip 's knee with my finger and thumb of one hand and pull really heard on his big toe with the other as he wrenched his foot 'straight' in the casts. Not easy at the best of times and worse with an 8-day old and after a Caesar delivery, it was just awful, I always felt nauseous and faint during the treatment. was an easy going baby and I just knew there was something wrong, but it took me a while to build up my confidence to argue with the doctor, go on the internet and find Dr Ponseti. After that it was all so much easier. I think you'll find that just one email to Dr Ponseti or one call to Dr Pirani will make you feel so much better. My husband is also the type to stick with the doctor says, they know best, blah, blah. But he quickly converted to Ponseti once he had read up more and what convinced him the most was the call to Dr Pirani that he made from South Africa. Dr Pirani spoke to him for over an hour and after that he was just ready to catch a plane and get the Ponseti treatment. Keep going, it's been a tough road for all of you to travel, but you're at a place now where you can find help and the doctors who will treat your little baby's feet with gentleness and care. I wish you and your family the best. www.clubfoot.co.za Moss Steps Charity www.steps.org.za Re: Re: Thanks to Everyone I am not sure if either type of casts would be more beneficial than the other. I suspect that he has sensitive skin and it just may be something we have to endure to get his feet right. I look at his feet and they are nowhere near overcorrected and I can tell his left one wants to still turn back in. He does something funny that I have never seen an infant do - when he lies on his back, he bends his knees up and tries to put his feet flat on the bed, etc. like he is going to do sit-ups or something. His right foot sits flat and he tries to do the same with the left - but it ends up resting more on the outer edge or the toes, which indicates to me that this foot is not ready to be out of casts. When I have the DBB on, he will periodically burst into tears and I will check them and see they have slipped again. I have been taking them off more than I should probably, but it's not likely they are helping him at this point anyway. I am trying to imagine what it might feel like to have a very tight shoe half on my foot and then a bar weighing it down. Whatever headway I made with my dh the other day was undone with an argument last night. I told him I was very frustrated with the DBB and thought I should just go and get his feet checked by Dr. Pirani. He thinks I should go to the orthotics shop that supplied the shoes and get their help. I am not interested in doing this after the way Hayden screamed both the times the orthotist put the boots on. And sure, they might get them on right, but the first time I take them off or they slip again, I'm back to square one aren't I? He thinks I am not giving this enough of a chance because it's only been ten days. But this is ten days that could have been put to use further correcting his feet the right way. I just want my baby fixed, I don't want this to drag on forever and the more I listen to all of you, the more convinced I am that I MUST take him elsewhere. I am considering emailing Dr. Ponseti to get his advice at the very least and then also going to Dr. Pirani. I took some pictures of Hayden's little feet and am going to upload them to the Photos section. Some of the photos aren't that good because my oldest daughter was taking them and I wasn't directing her properly. Once again thanks for the care and concern. I just want my baby whole and happy so that I can enjoy his infancy and not have nightmares about it. I want to tell him how joyful his infancy was, not how difficult. --- wrote: --------------------------------- OK, I need to interject here... Dr. Pirani uses fiberglass casting mainly because of his belief that treatment for club foot requires the bare minimum of medical equipment. This comes from his work in third world contries specifically the Ugandan Project. But he also says that he finds it easier to get the bones to just where he wants them to be while binding the foot with the fiberglass and it also hardens very quickly and is much more lightweight than a plaster cast! He has Dr. Ponseti's full blessing and receives excellent results!!! Dr. Pirani's sucess rates are above 95% with these fiberglass casts and to generalize and say that a doc cannot form them as well as plaster is not right. Let's be clear here, Dr. Alvarez is not casting properly. Not suprising when you look at how she goes about the rest of her treatment! Lumping fiberglass casting in with bad treatment is not a good idea because it is not true. & Grace > > , the problem with fiberglass casts is that the doc cannot form them around the foot as " custom " as a plaster cast, and it's very key that the doc form the cast and hold the foot totally exact as it hardens, smoothing it in where it needs formed to fit like a glove. Like I said before, the bones in the foot have to be placed in a very specific, sequential manner to do any good and held there while casted. It's not a cast just anyone can apply as perhaps a broken-leg cast could be. There shouldn't be any bruising. It should be done slowly and methodically holding the bones exactly as it's done. > > The FAB (dbb) isn't going to stay on if his foot isn't corrected to begin with. The FAB is NOT to correct a foot but to MAINTAIN correction - big difference! Many docs seem to over look that little fact. > > Also, prior patients feet might look normal on the out side but that's no proof they will remain normal thorugh out life. Have you spoken to any adult patients or at least teen age/oder kids whove been treated here? What are theire results? > > The tenotomy is a very minor, one=time deal. My dh stayed in with our 2nd son while he had the tenotomy. It was one little prick in the heel and over with. Ten minutes or so start to finish, numbing the skin, pricking the tendon to release it, then re-casting so the foot would heal in the right position. Wiggling a needs injecting a burning agent sounds like hell to me compared to the tenotomy. My nephew got botox shots for a non-cf condition and he says the pain was unbearable. > > I still say you should seek alternative treatments because it is taking too long. Your kid should be done by now and moved on to much greener pastures in his treatment by this many weeks in to the deal. My 1st son's doctor really believed in what he was doing too - and had other " happy " patients, but he totally screwed up my kid and I didn't realize it until it was too late. It's not too late for your kid. > Thanks to Everyone > > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting- type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 I agree! Daiga > > > > , the problem with fiberglass casts is that the doc cannot > form them around the foot as " custom " as a plaster cast, and it's > very key that the doc form the cast and hold the foot totally exact > as it hardens, smoothing it in where it needs formed to fit like a > glove. Like I said before, the bones in the foot have to be placed > in a very specific, sequential manner to do any good and held there > while casted. It's not a cast just anyone can apply as perhaps a > broken-leg cast could be. There shouldn't be any bruising. It > should be done slowly and methodically holding the bones exactly as > it's done. > > > > The FAB (dbb) isn't going to stay on if his foot isn't corrected to > begin with. The FAB is NOT to correct a foot but to MAINTAIN > correction - big difference! Many docs seem to over look that little > fact. > > > > Also, prior patients feet might look normal on the out side but > that's no proof they will remain normal thorugh out life. Have you > spoken to any adult patients or at least teen age/oder kids whove > been treated here? What are theire results? > > > > The tenotomy is a very minor, one=time deal. My dh stayed in with > our 2nd son while he had the tenotomy. It was one little prick in > the heel and over with. Ten minutes or so start to finish, numbing > the skin, pricking the tendon to release it, then re-casting so the > foot would heal in the right position. Wiggling a needs injecting a > burning agent sounds like hell to me compared to the tenotomy. My > nephew got botox shots for a non-cf condition and he says the pain > was unbearable. > > > > I still say you should seek alternative treatments because it is > taking too long. Your kid should be done by now and moved on to much > greener pastures in his treatment by this many weeks in to the deal. > My 1st son's doctor really believed in what he was doing too - and > had other " happy " patients, but he totally screwed up my kid and I > didn't realize it until it was too late. It's not too late for your > kid. > > Thanks to Everyone > > > > > > First off a great big thanks to so many caring and concerned people > > for all of your responses, support and suggestions, as well as > > direction to articles, etc. > > > > I feel I should clarify a few things so that you can all have a > fuller > > understanding of the issues with Hayden's skin. It is not my > > intention to bash on Dr. Alvarez because I feel that she truly > > believes in what she is doing. And she has had success, no doubt > > about it, as I have seen the older children that she has treated > from > > infancy. They look fine and all of the parents seem to think the > > Botox is a good idea and that it works. It is not like Hayden has > not > > made progress, either. His feet are worlds different from what they > > were at birth. I will post some photos so you can see the > comparison. > > My biggest issues have been with her particular bedside manner > > (blunt) and the fact that Hayden screams so much when she is > examining > > him or when she was holding his foot in position for the casting. > > When I took the casts off, there were often bruises across the tops > of > > feet from where she had held his foot. This was very disconcerting > > for me, but I was always told that this was normal. Let me say that > > this did not offer me much reassurance. No one likes to see their > > child marked in any way and while I understand that the treatment is > > going to involve discomfort in some form along the way, it honestly > > was starting to feel like ritual torture every week. > > > > The casts that Hayden had applied were fibreglass with a batting- > type > > underlayer. I do not know what fibre it was, but it appeared to be > > cotton. The final casts he had were put on with a cotton flannel > > underlay which actually made his skin worse and was stuck to his > skin > > in many places where it had been weeping. There has been another > > little girl undergoing the same treatment as Hayden with the same > > issues. Both babies were large at birth (Hayden 9 pounds, Baby > Girl 9 > > pounds 13 ounces) which made them sweaty and overly warm to start > > with. We had an unusually hot and humid summer this year that did > not > > help. Having a cast on in that kind of heat must be like wearing > > three pairs of pants under a snow suit in the Bahamas! Knowing that > > the other child was enduring the same problems with her skin made me > > think that this was not an allergic reaction. It was suggested to > me > > that the reason his feet were taking longer to correct was because > it > > was so hot - his feet were swollen and they could not get a proper > > position each time. The second to last casts we had on were done by > > another doctor because we were there on a different day and I > noticed > > that he worked very hard to get a " heel " in the cast and took his > > time. I did see a big difference after that cast came off. That > > being said, the Club Foot Clinic at Children's is very busy and I > know > > they are trying to see as many people as they can. > > > > I'm still feeling very uncertain about the boots and bar. I think > > they are the Dennis Brown type. I kind of got a " just tough it out " > > response when I expressed concerns about how well they are fitting > him > > as they continue to slip on his feet or come completely off. He's a > > real kicker and don't think for a moment he hasn't realized he can > > free himself if he tries hard enough! I know that some of the > > fussiness can come from them just not wanting to be in them as they > > are restrictive. But when I see his foot has slipped and he is > > cranky, I can't understand how that would be comfortable and don't > > think that I should be having to replace/adjust them all day long. > > How can they do their job if they don't fit properly? I have tried > > the socks without seams and the socks with grips on the bottom and > > neither seems better than the other. When I look at Hayden's feet > in > > socks, the right foot seems to be be fine, but the left does not > fill > > out the heel. > > > > I am interested in meeting with Dr. Pirani. If he decides that > Hayden > > will need more casts, then I am okay with that but it still brings > the > > skin issue along with it. And maybe he will have other suggestions > to > > that end. I am not keen on the idea of a tenotomy, but after > thinking > > about it a bit, I don't think that it is any more or less invasive > > than the Botox treatment. The Botox consisted of inserting the > needle > > and then moving it all around the tendon and injecting it bit by > bit. > > I suppose if it would help bring the tendon down just that little > bit > > more, then I would agree to it. > > > > At any rate, I am glad that I have this group of people to rely on > and > > appreciate all of your kind words! > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 I agree! Daiga > > > > , the problem with fiberglass casts is that the doc cannot > form them around the foot as " custom " as a plaster cast, and it's > very key that the doc form the cast and hold the foot totally exact > as it hardens, smoothing it in where it needs formed to fit like a > glove. Like I said before, the bones in the foot have to be placed > in a very specific, sequential manner to do any good and held there > while casted. It's not a cast just anyone can apply as perhaps a > broken-leg cast could be. There shouldn't be any bruising. It > should be done slowly and methodically holding the bones exactly as > it's done. > > > > The FAB (dbb) isn't going to stay on if his foot isn't corrected to > begin with. The FAB is NOT to correct a foot but to MAINTAIN > correction - big difference! Many docs seem to over look that little > fact. > > > > Also, prior patients feet might look normal on the out side but > that's no proof they will remain normal thorugh out life. Have you > spoken to any adult patients or at least teen age/oder kids whove > been treated here? What are theire results? > > > > The tenotomy is a very minor, one=time deal. My dh stayed in with > our 2nd son while he had the tenotomy. It was one little prick in > the heel and over with. Ten minutes or so start to finish, numbing > the skin, pricking the tendon to release it, then re-casting so the > foot would heal in the right position. Wiggling a needs injecting a > burning agent sounds like hell to me compared to the tenotomy. My > nephew got botox shots for a non-cf condition and he says the pain > was unbearable. > > > > I still say you should seek alternative treatments because it is > taking too long. Your kid should be done by now and moved on to much > greener pastures in his treatment by this many weeks in to the deal. > My 1st son's doctor really believed in what he was doing too - and > had other " happy " patients, but he totally screwed up my kid and I > didn't realize it until it was too late. It's not too late for your > kid. > > Thanks to Everyone > > > > > > First off a great big thanks to so many caring and concerned people > > for all of your responses, support and suggestions, as well as > > direction to articles, etc. > > > > I feel I should clarify a few things so that you can all have a > fuller > > understanding of the issues with Hayden's skin. It is not my > > intention to bash on Dr. Alvarez because I feel that she truly > > believes in what she is doing. And she has had success, no doubt > > about it, as I have seen the older children that she has treated > from > > infancy. They look fine and all of the parents seem to think the > > Botox is a good idea and that it works. It is not like Hayden has > not > > made progress, either. His feet are worlds different from what they > > were at birth. I will post some photos so you can see the > comparison. > > My biggest issues have been with her particular bedside manner > > (blunt) and the fact that Hayden screams so much when she is > examining > > him or when she was holding his foot in position for the casting. > > When I took the casts off, there were often bruises across the tops > of > > feet from where she had held his foot. This was very disconcerting > > for me, but I was always told that this was normal. Let me say that > > this did not offer me much reassurance. No one likes to see their > > child marked in any way and while I understand that the treatment is > > going to involve discomfort in some form along the way, it honestly > > was starting to feel like ritual torture every week. > > > > The casts that Hayden had applied were fibreglass with a batting- > type > > underlayer. I do not know what fibre it was, but it appeared to be > > cotton. The final casts he had were put on with a cotton flannel > > underlay which actually made his skin worse and was stuck to his > skin > > in many places where it had been weeping. There has been another > > little girl undergoing the same treatment as Hayden with the same > > issues. Both babies were large at birth (Hayden 9 pounds, Baby > Girl 9 > > pounds 13 ounces) which made them sweaty and overly warm to start > > with. We had an unusually hot and humid summer this year that did > not > > help. Having a cast on in that kind of heat must be like wearing > > three pairs of pants under a snow suit in the Bahamas! Knowing that > > the other child was enduring the same problems with her skin made me > > think that this was not an allergic reaction. It was suggested to > me > > that the reason his feet were taking longer to correct was because > it > > was so hot - his feet were swollen and they could not get a proper > > position each time. The second to last casts we had on were done by > > another doctor because we were there on a different day and I > noticed > > that he worked very hard to get a " heel " in the cast and took his > > time. I did see a big difference after that cast came off. That > > being said, the Club Foot Clinic at Children's is very busy and I > know > > they are trying to see as many people as they can. > > > > I'm still feeling very uncertain about the boots and bar. I think > > they are the Dennis Brown type. I kind of got a " just tough it out " > > response when I expressed concerns about how well they are fitting > him > > as they continue to slip on his feet or come completely off. He's a > > real kicker and don't think for a moment he hasn't realized he can > > free himself if he tries hard enough! I know that some of the > > fussiness can come from them just not wanting to be in them as they > > are restrictive. But when I see his foot has slipped and he is > > cranky, I can't understand how that would be comfortable and don't > > think that I should be having to replace/adjust them all day long. > > How can they do their job if they don't fit properly? I have tried > > the socks without seams and the socks with grips on the bottom and > > neither seems better than the other. When I look at Hayden's feet > in > > socks, the right foot seems to be be fine, but the left does not > fill > > out the heel. > > > > I am interested in meeting with Dr. Pirani. If he decides that > Hayden > > will need more casts, then I am okay with that but it still brings > the > > skin issue along with it. And maybe he will have other suggestions > to > > that end. I am not keen on the idea of a tenotomy, but after > thinking > > about it a bit, I don't think that it is any more or less invasive > > than the Botox treatment. The Botox consisted of inserting the > needle > > and then moving it all around the tendon and injecting it bit by > bit. > > I suppose if it would help bring the tendon down just that little > bit > > more, then I would agree to it. > > > > At any rate, I am glad that I have this group of people to rely on > and > > appreciate all of your kind words! > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 This is what I have been trying to convince my husband of - that the boots should not be hurting him - maybe mildly uncomfortable to begin with, but eventually the feet adjust to them. When I removed them this morning, he had deep grooves just at the top of each heel, indicating that the feet had slipped and the top of the boot was resting there. Fortunately he does not have any pressure sores or blisters. Why should I " give this more of a chance " when I know...FEEL...that this is not working? I don't want to defy my husband and go against his wishes, because there is already enough conflict between us, but what else can I do? Should I just tell him I am going like Daiga did? I don't know if his reaction would be the same. Being in his line of work, he is more analytical, but I don't see him doing any research of his own on this matter. He is just blindly agreeing to what is happening and I don't get it! I would think that if a doctor was disrespecting his wife that he would want something to change. He would not put up with it if the doctor was a gynecologist or an MD. I don't know what to do.... --- Moss wrote: --------------------------------- Hi No it doesn't sound to me like his feet are corrected yet, which is probably why his FAB is slipping and causing discomfort. I wouldn't go back to the orthotist either, they should have picked up that there were problems instead of telling you to 'tough it out'. Wearing the FAB is not usually a painful or unpleasant experience and if it is there are things that can solve it - like correcting the feet, fitting the shoes properly. also had an awful experience with his first doctor before he went to Dr Ponseti, and that doctor also had no bedside manner. He always made me feel stupid and emotional, every time I asked if it wasn't hurting as he wrenched his feet (and would almost stop breathing he would scream so much), he would tell me that it doesn't hurt. I was always so upset afterwards and I dreaded going there. That doctor would make me grip 's knee with my finger and thumb of one hand and pull really heard on his big toe with the other as he wrenched his foot 'straight' in the casts. Not easy at the best of times and worse with an 8-day old and after a Caesar delivery, it was just awful, I always felt nauseous and faint during the treatment. was an easy going baby and I just knew there was something wrong, but it took me a while to build up my confidence to argue with the doctor, go on the internet and find Dr Ponseti. After that it was all so much easier. I think you'll find that just one email to Dr Ponseti or one call to Dr Pirani will make you feel so much better. My husband is also the type to stick with the doctor says, they know best, blah, blah. But he quickly converted to Ponseti once he had read up more and what convinced him the most was the call to Dr Pirani that he made from South Africa. Dr Pirani spoke to him for over an hour and after that he was just ready to catch a plane and get the Ponseti treatment. Keep going, it's been a tough road for all of you to travel, but you're at a place now where you can find help and the doctors who will treat your little baby's feet with gentleness and care. I wish you and your family the best. www.clubfoot.co.za Moss Steps Charity www.steps.org.za Re: Re: Thanks to Everyone I am not sure if either type of casts would be more beneficial than the other. I suspect that he has sensitive skin and it just may be something we have to endure to get his feet right. I look at his feet and they are nowhere near overcorrected and I can tell his left one wants to still turn back in. He does something funny that I have never seen an infant do - when he lies on his back, he bends his knees up and tries to put his feet flat on the bed, etc. like he is going to do sit-ups or something. His right foot sits flat and he tries to do the same with the left - but it ends up resting more on the outer edge or the toes, which indicates to me that this foot is not ready to be out of casts. When I have the DBB on, he will periodically burst into tears and I will check them and see they have slipped again. I have been taking them off more than I should probably, but it's not likely they are helping him at this point anyway. I am trying to imagine what it might feel like to have a very tight shoe half on my foot and then a bar weighing it down. Whatever headway I made with my dh the other day was undone with an argument last night. I told him I was very frustrated with the DBB and thought I should just go and get his feet checked by Dr. Pirani. He thinks I should go to the orthotics shop that supplied the shoes and get their help. I am not interested in doing this after the way Hayden screamed both the times the orthotist put the boots on. And sure, they might get them on right, but the first time I take them off or they slip again, I'm back to square one aren't I? He thinks I am not giving this enough of a chance because it's only been ten days. But this is ten days that could have been put to use further correcting his feet the right way. I just want my baby fixed, I don't want this to drag on forever and the more I listen to all of you, the more convinced I am that I MUST take him elsewhere. I am considering emailing Dr. Ponseti to get his advice at the very least and then also going to Dr. Pirani. I took some pictures of Hayden's little feet and am going to upload them to the Photos section. Some of the photos aren't that good because my oldest daughter was taking them and I wasn't directing her properly. Once again thanks for the care and concern. I just want my baby whole and happy so that I can enjoy his infancy and not have nightmares about it. I want to tell him how joyful his infancy was, not how difficult. --- wrote: --------------------------------- OK, I need to interject here... Dr. Pirani uses fiberglass casting mainly because of his belief that treatment for club foot requires the bare minimum of medical equipment. This comes from his work in third world contries specifically the Ugandan Project. But he also says that he finds it easier to get the bones to just where he wants them to be while binding the foot with the fiberglass and it also hardens very quickly and is much more lightweight than a plaster cast! He has Dr. Ponseti's full blessing and receives excellent results!!! Dr. Pirani's sucess rates are above 95% with these fiberglass casts and to generalize and say that a doc cannot form them as well as plaster is not right. Let's be clear here, Dr. Alvarez is not casting properly. Not suprising when you look at how she goes about the rest of her treatment! Lumping fiberglass casting in with bad treatment is not a good idea because it is not true. & Grace > > , the problem with fiberglass casts is that the doc cannot form them around the foot as " custom " as a plaster cast, and it's very key that the doc form the cast and hold the foot totally exact as it hardens, smoothing it in where it needs formed to fit like a glove. Like I said before, the bones in the foot have to be placed in a very specific, sequential manner to do any good and held there while casted. It's not a cast just anyone can apply as perhaps a broken-leg cast could be. There shouldn't be any bruising. It should be done slowly and methodically holding the bones exactly as it's done. > > The FAB (dbb) isn't going to stay on if his foot isn't corrected to begin with. The FAB is NOT to correct a foot but to MAINTAIN correction - big difference! Many docs seem to over look that little fact. > > Also, prior patients feet might look normal on the out side but that's no proof they will remain normal thorugh out life. Have you spoken to any adult patients or at least teen age/oder kids whove been treated here? What are theire results? > > The tenotomy is a very minor, one=time deal. My dh stayed in with our 2nd son while he had the tenotomy. It was one little prick in the heel and over with. Ten minutes or so start to finish, numbing the skin, pricking the tendon to release it, then re-casting so the foot would heal in the right position. Wiggling a needs injecting a burning agent sounds like hell to me compared to the tenotomy. My nephew got botox shots for a non-cf condition and he says the pain was unbearable. > > I still say you should seek alternative treatments because it is taking too long. Your kid should be done by now and moved on to much greener pastures in his treatment by this many weeks in to the deal. My 1st son's doctor really believed in what he was doing too - and had other " happy " patients, but he totally screwed up my kid and I didn't realize it until it was too late. It's not too late for your kid. > Thanks to Everyone > > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting- type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 This is what I have been trying to convince my husband of - that the boots should not be hurting him - maybe mildly uncomfortable to begin with, but eventually the feet adjust to them. When I removed them this morning, he had deep grooves just at the top of each heel, indicating that the feet had slipped and the top of the boot was resting there. Fortunately he does not have any pressure sores or blisters. Why should I " give this more of a chance " when I know...FEEL...that this is not working? I don't want to defy my husband and go against his wishes, because there is already enough conflict between us, but what else can I do? Should I just tell him I am going like Daiga did? I don't know if his reaction would be the same. Being in his line of work, he is more analytical, but I don't see him doing any research of his own on this matter. He is just blindly agreeing to what is happening and I don't get it! I would think that if a doctor was disrespecting his wife that he would want something to change. He would not put up with it if the doctor was a gynecologist or an MD. I don't know what to do.... --- Moss wrote: --------------------------------- Hi No it doesn't sound to me like his feet are corrected yet, which is probably why his FAB is slipping and causing discomfort. I wouldn't go back to the orthotist either, they should have picked up that there were problems instead of telling you to 'tough it out'. Wearing the FAB is not usually a painful or unpleasant experience and if it is there are things that can solve it - like correcting the feet, fitting the shoes properly. also had an awful experience with his first doctor before he went to Dr Ponseti, and that doctor also had no bedside manner. He always made me feel stupid and emotional, every time I asked if it wasn't hurting as he wrenched his feet (and would almost stop breathing he would scream so much), he would tell me that it doesn't hurt. I was always so upset afterwards and I dreaded going there. That doctor would make me grip 's knee with my finger and thumb of one hand and pull really heard on his big toe with the other as he wrenched his foot 'straight' in the casts. Not easy at the best of times and worse with an 8-day old and after a Caesar delivery, it was just awful, I always felt nauseous and faint during the treatment. was an easy going baby and I just knew there was something wrong, but it took me a while to build up my confidence to argue with the doctor, go on the internet and find Dr Ponseti. After that it was all so much easier. I think you'll find that just one email to Dr Ponseti or one call to Dr Pirani will make you feel so much better. My husband is also the type to stick with the doctor says, they know best, blah, blah. But he quickly converted to Ponseti once he had read up more and what convinced him the most was the call to Dr Pirani that he made from South Africa. Dr Pirani spoke to him for over an hour and after that he was just ready to catch a plane and get the Ponseti treatment. Keep going, it's been a tough road for all of you to travel, but you're at a place now where you can find help and the doctors who will treat your little baby's feet with gentleness and care. I wish you and your family the best. www.clubfoot.co.za Moss Steps Charity www.steps.org.za Re: Re: Thanks to Everyone I am not sure if either type of casts would be more beneficial than the other. I suspect that he has sensitive skin and it just may be something we have to endure to get his feet right. I look at his feet and they are nowhere near overcorrected and I can tell his left one wants to still turn back in. He does something funny that I have never seen an infant do - when he lies on his back, he bends his knees up and tries to put his feet flat on the bed, etc. like he is going to do sit-ups or something. His right foot sits flat and he tries to do the same with the left - but it ends up resting more on the outer edge or the toes, which indicates to me that this foot is not ready to be out of casts. When I have the DBB on, he will periodically burst into tears and I will check them and see they have slipped again. I have been taking them off more than I should probably, but it's not likely they are helping him at this point anyway. I am trying to imagine what it might feel like to have a very tight shoe half on my foot and then a bar weighing it down. Whatever headway I made with my dh the other day was undone with an argument last night. I told him I was very frustrated with the DBB and thought I should just go and get his feet checked by Dr. Pirani. He thinks I should go to the orthotics shop that supplied the shoes and get their help. I am not interested in doing this after the way Hayden screamed both the times the orthotist put the boots on. And sure, they might get them on right, but the first time I take them off or they slip again, I'm back to square one aren't I? He thinks I am not giving this enough of a chance because it's only been ten days. But this is ten days that could have been put to use further correcting his feet the right way. I just want my baby fixed, I don't want this to drag on forever and the more I listen to all of you, the more convinced I am that I MUST take him elsewhere. I am considering emailing Dr. Ponseti to get his advice at the very least and then also going to Dr. Pirani. I took some pictures of Hayden's little feet and am going to upload them to the Photos section. Some of the photos aren't that good because my oldest daughter was taking them and I wasn't directing her properly. Once again thanks for the care and concern. I just want my baby whole and happy so that I can enjoy his infancy and not have nightmares about it. I want to tell him how joyful his infancy was, not how difficult. --- wrote: --------------------------------- OK, I need to interject here... Dr. Pirani uses fiberglass casting mainly because of his belief that treatment for club foot requires the bare minimum of medical equipment. This comes from his work in third world contries specifically the Ugandan Project. But he also says that he finds it easier to get the bones to just where he wants them to be while binding the foot with the fiberglass and it also hardens very quickly and is much more lightweight than a plaster cast! He has Dr. Ponseti's full blessing and receives excellent results!!! Dr. Pirani's sucess rates are above 95% with these fiberglass casts and to generalize and say that a doc cannot form them as well as plaster is not right. Let's be clear here, Dr. Alvarez is not casting properly. Not suprising when you look at how she goes about the rest of her treatment! Lumping fiberglass casting in with bad treatment is not a good idea because it is not true. & Grace > > , the problem with fiberglass casts is that the doc cannot form them around the foot as " custom " as a plaster cast, and it's very key that the doc form the cast and hold the foot totally exact as it hardens, smoothing it in where it needs formed to fit like a glove. Like I said before, the bones in the foot have to be placed in a very specific, sequential manner to do any good and held there while casted. It's not a cast just anyone can apply as perhaps a broken-leg cast could be. There shouldn't be any bruising. It should be done slowly and methodically holding the bones exactly as it's done. > > The FAB (dbb) isn't going to stay on if his foot isn't corrected to begin with. The FAB is NOT to correct a foot but to MAINTAIN correction - big difference! Many docs seem to over look that little fact. > > Also, prior patients feet might look normal on the out side but that's no proof they will remain normal thorugh out life. Have you spoken to any adult patients or at least teen age/oder kids whove been treated here? What are theire results? > > The tenotomy is a very minor, one=time deal. My dh stayed in with our 2nd son while he had the tenotomy. It was one little prick in the heel and over with. Ten minutes or so start to finish, numbing the skin, pricking the tendon to release it, then re-casting so the foot would heal in the right position. Wiggling a needs injecting a burning agent sounds like hell to me compared to the tenotomy. My nephew got botox shots for a non-cf condition and he says the pain was unbearable. > > I still say you should seek alternative treatments because it is taking too long. Your kid should be done by now and moved on to much greener pastures in his treatment by this many weeks in to the deal. My 1st son's doctor really believed in what he was doing too - and had other " happy " patients, but he totally screwed up my kid and I didn't realize it until it was too late. It's not too late for your kid. > Thanks to Everyone > > > First off a great big thanks to so many caring and concerned people > for all of your responses, support and suggestions, as well as > direction to articles, etc. > > I feel I should clarify a few things so that you can all have a fuller > understanding of the issues with Hayden's skin. It is not my > intention to bash on Dr. Alvarez because I feel that she truly > believes in what she is doing. And she has had success, no doubt > about it, as I have seen the older children that she has treated from > infancy. They look fine and all of the parents seem to think the > Botox is a good idea and that it works. It is not like Hayden has not > made progress, either. His feet are worlds different from what they > were at birth. I will post some photos so you can see the comparison. > My biggest issues have been with her particular bedside manner > (blunt) and the fact that Hayden screams so much when she is examining > him or when she was holding his foot in position for the casting. > When I took the casts off, there were often bruises across the tops of > feet from where she had held his foot. This was very disconcerting > for me, but I was always told that this was normal. Let me say that > this did not offer me much reassurance. No one likes to see their > child marked in any way and while I understand that the treatment is > going to involve discomfort in some form along the way, it honestly > was starting to feel like ritual torture every week. > > The casts that Hayden had applied were fibreglass with a batting- type > underlayer. I do not know what fibre it was, but it appeared to be > cotton. The final casts he had were put on with a cotton flannel > underlay which actually made his skin worse and was stuck to his skin > in many places where it had been weeping. There has been another > little girl undergoing the same treatment as Hayden with the same > issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 > pounds 13 ounces) which made them sweaty and overly warm to start > with. We had an unusually hot and humid summer this year that did not > help. Having a cast on in that kind of heat must be like wearing > three pairs of pants under a snow suit in the Bahamas! Knowing that > the other child was enduring the same problems with her skin made me > think that this was not an allergic reaction. It was suggested to me > that the reason his feet were taking longer to correct was because it > was so hot - his feet were swollen and they could not get a proper > position each time. The second to last casts we had on were done by > another doctor because we were there on a different day and I noticed > that he worked very hard to get a " heel " in the cast and took his > time. I did see a big difference after that cast came off. That > being said, the Club Foot Clinic at Children's is very busy and I know > they are trying to see as many people as they can. > > I'm still feeling very uncertain about the boots and bar. I think > they are the Dennis Brown type. I kind of got a " just tough it out " > response when I expressed concerns about how well they are fitting him > as they continue to slip on his feet or come completely off. He's a > real kicker and don't think for a moment he hasn't realized he can > free himself if he tries hard enough! I know that some of the > fussiness can come from them just not wanting to be in them as they > are restrictive. But when I see his foot has slipped and he is > cranky, I can't understand how that would be comfortable and don't > think that I should be having to replace/adjust them all day long. > How can they do their job if they don't fit properly? I have tried > the socks without seams and the socks with grips on the bottom and > neither seems better than the other. When I look at Hayden's feet in > socks, the right foot seems to be be fine, but the left does not fill > out the heel. > > I am interested in meeting with Dr. Pirani. If he decides that Hayden > will need more casts, then I am okay with that but it still brings the > skin issue along with it. And maybe he will have other suggestions to > that end. I am not keen on the idea of a tenotomy, but after thinking > about it a bit, I don't think that it is any more or less invasive > than the Botox treatment. The Botox consisted of inserting the needle > and then moving it all around the tendon and injecting it bit by bit. > I suppose if it would help bring the tendon down just that little bit > more, then I would agree to it. > > At any rate, I am glad that I have this group of people to rely on and > appreciate all of your kind words! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 Hi , I'm sorry that you're having so much trouble to convince your husband, I don't understand how he can refuse your son to have a second opinion! Maybe you could email Dr Ponseti with some pictures of your son's feet and explain the situation. I've emailed him before as well and he always replied within a couple of days even though we're treated in the UK, so I'm sure he'll do the best he can to help. Maybe an email directly from Dr Ponseti would convince even your husband... All the best, with (*9/02) and Alister (*9/02, RCF, Ponseti method, UK) --- Cohen wrote: > I am not sure if either type of casts would be more > beneficial than the other. I suspect that he has > sensitive skin and it just may be something we have > to > endure to get his feet right. I look at his feet > and > they are nowhere near overcorrected and I can tell > his > left one wants to still turn back in. He does > something funny that I have never seen an infant do > - > when he lies on his back, he bends his knees up and > tries to put his feet flat on the bed, etc. like he > is > going to do sit-ups or something. His right foot > sits > flat and he tries to do the same with the left - but > it ends up resting more on the outer edge or the > toes, > which indicates to me that this foot is not ready to > be out of casts. > > When I have the DBB on, he will periodically burst > into tears and I will check them and see they have > slipped again. I have been taking them off more > than > I should probably, but it's not likely they are > helping him at this point anyway. I am trying to > imagine what it might feel like to have a very tight > shoe half on my foot and then a bar weighing it > down. > > Whatever headway I made with my dh the other day was > undone with an argument last night. I told him I > was > very frustrated with the DBB and thought I should > just > go and get his feet checked by Dr. Pirani. He > thinks > I should go to the orthotics shop that supplied the > shoes and get their help. I am not interested in > doing this after the way Hayden screamed both the > times the orthotist put the boots on. And sure, > they > might get them on right, but the first time I take > them off or they slip again, I'm back to square one > aren't I? He thinks I am not giving this enough of > a > chance because it's only been ten days. But this is > ten days that could have been put to use further > correcting his feet the right way. > > I just want my baby fixed, I don't want this to drag > on forever and the more I listen to all of you, the > more convinced I am that I MUST take him elsewhere. > I > am considering emailing Dr. Ponseti to get his > advice > at the very least and then also going to Dr. Pirani. > > I took some pictures of Hayden's little feet and am > going to upload them to the Photos section. Some of > the photos aren't that good because my oldest > daughter > was taking them and I wasn't directing her properly. > > Once again thanks for the care and concern. I just > want my baby whole and happy so that I can enjoy his > infancy and not have nightmares about it. I want to > tell him how joyful his infancy was, not how > difficult. > > ___________________________________________________________ To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. http://uk.security.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 Hi , I'm sorry that you're having so much trouble to convince your husband, I don't understand how he can refuse your son to have a second opinion! Maybe you could email Dr Ponseti with some pictures of your son's feet and explain the situation. I've emailed him before as well and he always replied within a couple of days even though we're treated in the UK, so I'm sure he'll do the best he can to help. Maybe an email directly from Dr Ponseti would convince even your husband... All the best, with (*9/02) and Alister (*9/02, RCF, Ponseti method, UK) --- Cohen wrote: > I am not sure if either type of casts would be more > beneficial than the other. I suspect that he has > sensitive skin and it just may be something we have > to > endure to get his feet right. I look at his feet > and > they are nowhere near overcorrected and I can tell > his > left one wants to still turn back in. He does > something funny that I have never seen an infant do > - > when he lies on his back, he bends his knees up and > tries to put his feet flat on the bed, etc. like he > is > going to do sit-ups or something. His right foot > sits > flat and he tries to do the same with the left - but > it ends up resting more on the outer edge or the > toes, > which indicates to me that this foot is not ready to > be out of casts. > > When I have the DBB on, he will periodically burst > into tears and I will check them and see they have > slipped again. I have been taking them off more > than > I should probably, but it's not likely they are > helping him at this point anyway. I am trying to > imagine what it might feel like to have a very tight > shoe half on my foot and then a bar weighing it > down. > > Whatever headway I made with my dh the other day was > undone with an argument last night. I told him I > was > very frustrated with the DBB and thought I should > just > go and get his feet checked by Dr. Pirani. He > thinks > I should go to the orthotics shop that supplied the > shoes and get their help. I am not interested in > doing this after the way Hayden screamed both the > times the orthotist put the boots on. And sure, > they > might get them on right, but the first time I take > them off or they slip again, I'm back to square one > aren't I? He thinks I am not giving this enough of > a > chance because it's only been ten days. But this is > ten days that could have been put to use further > correcting his feet the right way. > > I just want my baby fixed, I don't want this to drag > on forever and the more I listen to all of you, the > more convinced I am that I MUST take him elsewhere. > I > am considering emailing Dr. Ponseti to get his > advice > at the very least and then also going to Dr. Pirani. > > I took some pictures of Hayden's little feet and am > going to upload them to the Photos section. Some of > the photos aren't that good because my oldest > daughter > was taking them and I wasn't directing her properly. > > Once again thanks for the care and concern. I just > want my baby whole and happy so that I can enjoy his > infancy and not have nightmares about it. I want to > tell him how joyful his infancy was, not how > difficult. > > ___________________________________________________________ To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. http://uk.security.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 So is has he looked at any of the information you have found? Is he still not convinced? Did you print off any of the medical journal articles? This is what I would think would convince him. I can't in good conscience tell you to flat out defy your husband, but there has to be a way to convince him. I don't see what the big deal is to just get a second opinion. You have been the primary care giver when it comes to his feet, you will probably be the one to take Hayden to 99% of his doctor visits (all types of doctors) over the next umpteen years, I can't see anyway that this is not your decision to make. I will continue to think about this and try to come up with something that will make him see the light. Keep us posted! > > > > , the problem with fiberglass casts is that > the doc cannot > form them around the foot as " custom " as a plaster > cast, and it's > very key that the doc form the cast and hold the foot > totally exact > as it hardens, smoothing it in where it needs formed > to fit like a > glove. Like I said before, the bones in the foot have > to be placed > in a very specific, sequential manner to do any good > and held there > while casted. It's not a cast just anyone can apply > as perhaps a > broken-leg cast could be. There shouldn't be any > bruising. It > should be done slowly and methodically holding the > bones exactly as > it's done. > > > > The FAB (dbb) isn't going to stay on if his foot > isn't corrected to > begin with. The FAB is NOT to correct a foot but to > MAINTAIN > correction - big difference! Many docs seem to over > look that little > fact. > > > > Also, prior patients feet might look normal on the > out side but > that's no proof they will remain normal thorugh out > life. Have you > spoken to any adult patients or at least teen age/oder > kids whove > been treated here? What are theire results? > > > > The tenotomy is a very minor, one=time deal. My dh > stayed in with > our 2nd son while he had the tenotomy. It was one > little prick in > the heel and over with. Ten minutes or so start to > finish, numbing > the skin, pricking the tendon to release it, then > re-casting so the > foot would heal in the right position. Wiggling a > needs injecting a > burning agent sounds like hell to me compared to the > tenotomy. My > nephew got botox shots for a non-cf condition and he > says the pain > was unbearable. > > > > I still say you should seek alternative treatments > because it is > taking too long. Your kid should be done by now and > moved on to much > greener pastures in his treatment by this many weeks > in to the deal. > My 1st son's doctor really believed in what he was > doing too - and > had other " happy " patients, but he totally screwed up > my kid and I > didn't realize it until it was too late. It's not too > late for your > kid. > > Thanks to Everyone > > > > > > First off a great big thanks to so many caring and > concerned people > > for all of your responses, support and suggestions, > as well as > > direction to articles, etc. > > > > I feel I should clarify a few things so that you can > all have a > fuller > > understanding of the issues with Hayden's skin. It > is not my > > intention to bash on Dr. Alvarez because I feel that > she truly > > believes in what she is doing. And she has had > success, no doubt > > about it, as I have seen the older children that she > has treated > from > > infancy. They look fine and all of the parents seem > to think the > > Botox is a good idea and that it works. It is not > like Hayden has > not > > made progress, either. His feet are worlds > different from what they > > were at birth. I will post some photos so you can > see the > comparison. > > My biggest issues have been with her particular > bedside manner > > (blunt) and the fact that Hayden screams so much > when she is > examining > > him or when she was holding his foot in position for > the casting. > > When I took the casts off, there were often bruises > across the tops > of > > feet from where she had held his foot. This was > very disconcerting > > for me, but I was always told that this was normal. > Let me say that > > this did not offer me much reassurance. No one > likes to see their > > child marked in any way and while I understand that > the treatment is > > going to involve discomfort in some form along the > way, it honestly > > was starting to feel like ritual torture every week. > > > > The casts that Hayden had applied were fibreglass > with a batting- > type > > underlayer. I do not know what fibre it was, but it > appeared to be > > cotton. The final casts he had were put on with a > cotton flannel > > underlay which actually made his skin worse and was > stuck to his > skin > > in many places where it had been weeping. There has > been another > > little girl undergoing the same treatment as Hayden > with the same > > issues. Both babies were large at birth (Hayden 9 > pounds, Baby > Girl 9 > > pounds 13 ounces) which made them sweaty and overly > warm to start > > with. We had an unusually hot and humid summer this > year that did > not > > help. Having a cast on in that kind of heat must be > like wearing > > three pairs of pants under a snow suit in the > Bahamas! Knowing that > > the other child was enduring the same problems with > her skin made me > > think that this was not an allergic reaction. It > was suggested to > me > > that the reason his feet were taking longer to > correct was because > it > > was so hot - his feet were swollen and they could > not get a proper > > position each time. The second to last casts we had > on were done by > > another doctor because we were there on a different > day and I > noticed > > that he worked very hard to get a " heel " in the cast > and took his > > time. I did see a big difference after that cast > came off. That > > being said, the Club Foot Clinic at Children's is > very busy and I > know > > they are trying to see as many people as they can. > > > > I'm still feeling very uncertain about the boots and > bar. I think > > they are the Dennis Brown type. I kind of got a > " just tough it out " > > response when I expressed concerns about how well > they are fitting > him > > as they continue to slip on his feet or come > completely off. He's a > > real kicker and don't think for a moment he hasn't > realized he can > > free himself if he tries hard enough! I know that > some of the > > fussiness can come from them just not wanting to be > in them as they > > are restrictive. But when I see his foot has > slipped and he is > > cranky, I can't understand how that would be > comfortable and don't > > think that I should be having to replace/adjust them > all day long. > > How can they do their job if they don't fit > properly? I have tried > > the socks without seams and the socks with grips on > the bottom and > > neither seems better than the other. When I look at > Hayden's feet > in > > socks, the right foot seems to be be fine, but the > left does not > fill > > out the heel. > > > > I am interested in meeting with Dr. Pirani. If he > decides that > Hayden > > will need more casts, then I am okay with that but > it still brings > the > > skin issue along with it. And maybe he will have > other suggestions > to > > that end. I am not keen on the idea of a tenotomy, > but after > thinking > > about it a bit, I don't think that it is any more or > less invasive > > than the Botox treatment. The Botox consisted of > inserting the > needle > > and then moving it all around the tendon and > injecting it bit by > bit. > > I suppose if it would help bring the tendon down > just that little > bit > > more, then I would agree to it. > > > > At any rate, I am glad that I have this group of > people to rely on > and > > appreciate all of your kind words! > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 So is has he looked at any of the information you have found? Is he still not convinced? Did you print off any of the medical journal articles? This is what I would think would convince him. I can't in good conscience tell you to flat out defy your husband, but there has to be a way to convince him. I don't see what the big deal is to just get a second opinion. You have been the primary care giver when it comes to his feet, you will probably be the one to take Hayden to 99% of his doctor visits (all types of doctors) over the next umpteen years, I can't see anyway that this is not your decision to make. I will continue to think about this and try to come up with something that will make him see the light. Keep us posted! > > > > , the problem with fiberglass casts is that > the doc cannot > form them around the foot as " custom " as a plaster > cast, and it's > very key that the doc form the cast and hold the foot > totally exact > as it hardens, smoothing it in where it needs formed > to fit like a > glove. Like I said before, the bones in the foot have > to be placed > in a very specific, sequential manner to do any good > and held there > while casted. It's not a cast just anyone can apply > as perhaps a > broken-leg cast could be. There shouldn't be any > bruising. It > should be done slowly and methodically holding the > bones exactly as > it's done. > > > > The FAB (dbb) isn't going to stay on if his foot > isn't corrected to > begin with. The FAB is NOT to correct a foot but to > MAINTAIN > correction - big difference! Many docs seem to over > look that little > fact. > > > > Also, prior patients feet might look normal on the > out side but > that's no proof they will remain normal thorugh out > life. Have you > spoken to any adult patients or at least teen age/oder > kids whove > been treated here? What are theire results? > > > > The tenotomy is a very minor, one=time deal. My dh > stayed in with > our 2nd son while he had the tenotomy. It was one > little prick in > the heel and over with. Ten minutes or so start to > finish, numbing > the skin, pricking the tendon to release it, then > re-casting so the > foot would heal in the right position. Wiggling a > needs injecting a > burning agent sounds like hell to me compared to the > tenotomy. My > nephew got botox shots for a non-cf condition and he > says the pain > was unbearable. > > > > I still say you should seek alternative treatments > because it is > taking too long. Your kid should be done by now and > moved on to much > greener pastures in his treatment by this many weeks > in to the deal. > My 1st son's doctor really believed in what he was > doing too - and > had other " happy " patients, but he totally screwed up > my kid and I > didn't realize it until it was too late. It's not too > late for your > kid. > > Thanks to Everyone > > > > > > First off a great big thanks to so many caring and > concerned people > > for all of your responses, support and suggestions, > as well as > > direction to articles, etc. > > > > I feel I should clarify a few things so that you can > all have a > fuller > > understanding of the issues with Hayden's skin. It > is not my > > intention to bash on Dr. Alvarez because I feel that > she truly > > believes in what she is doing. And she has had > success, no doubt > > about it, as I have seen the older children that she > has treated > from > > infancy. They look fine and all of the parents seem > to think the > > Botox is a good idea and that it works. It is not > like Hayden has > not > > made progress, either. His feet are worlds > different from what they > > were at birth. I will post some photos so you can > see the > comparison. > > My biggest issues have been with her particular > bedside manner > > (blunt) and the fact that Hayden screams so much > when she is > examining > > him or when she was holding his foot in position for > the casting. > > When I took the casts off, there were often bruises > across the tops > of > > feet from where she had held his foot. This was > very disconcerting > > for me, but I was always told that this was normal. > Let me say that > > this did not offer me much reassurance. No one > likes to see their > > child marked in any way and while I understand that > the treatment is > > going to involve discomfort in some form along the > way, it honestly > > was starting to feel like ritual torture every week. > > > > The casts that Hayden had applied were fibreglass > with a batting- > type > > underlayer. I do not know what fibre it was, but it > appeared to be > > cotton. The final casts he had were put on with a > cotton flannel > > underlay which actually made his skin worse and was > stuck to his > skin > > in many places where it had been weeping. There has > been another > > little girl undergoing the same treatment as Hayden > with the same > > issues. Both babies were large at birth (Hayden 9 > pounds, Baby > Girl 9 > > pounds 13 ounces) which made them sweaty and overly > warm to start > > with. We had an unusually hot and humid summer this > year that did > not > > help. Having a cast on in that kind of heat must be > like wearing > > three pairs of pants under a snow suit in the > Bahamas! Knowing that > > the other child was enduring the same problems with > her skin made me > > think that this was not an allergic reaction. It > was suggested to > me > > that the reason his feet were taking longer to > correct was because > it > > was so hot - his feet were swollen and they could > not get a proper > > position each time. The second to last casts we had > on were done by > > another doctor because we were there on a different > day and I > noticed > > that he worked very hard to get a " heel " in the cast > and took his > > time. I did see a big difference after that cast > came off. That > > being said, the Club Foot Clinic at Children's is > very busy and I > know > > they are trying to see as many people as they can. > > > > I'm still feeling very uncertain about the boots and > bar. I think > > they are the Dennis Brown type. I kind of got a > " just tough it out " > > response when I expressed concerns about how well > they are fitting > him > > as they continue to slip on his feet or come > completely off. He's a > > real kicker and don't think for a moment he hasn't > realized he can > > free himself if he tries hard enough! I know that > some of the > > fussiness can come from them just not wanting to be > in them as they > > are restrictive. But when I see his foot has > slipped and he is > > cranky, I can't understand how that would be > comfortable and don't > > think that I should be having to replace/adjust them > all day long. > > How can they do their job if they don't fit > properly? I have tried > > the socks without seams and the socks with grips on > the bottom and > > neither seems better than the other. When I look at > Hayden's feet > in > > socks, the right foot seems to be be fine, but the > left does not > fill > > out the heel. > > > > I am interested in meeting with Dr. Pirani. If he > decides that > Hayden > > will need more casts, then I am okay with that but > it still brings > the > > skin issue along with it. And maybe he will have > other suggestions > to > > that end. I am not keen on the idea of a tenotomy, > but after > thinking > > about it a bit, I don't think that it is any more or > less invasive > > than the Botox treatment. The Botox consisted of > inserting the > needle > > and then moving it all around the tendon and > injecting it bit by > bit. > > I suppose if it would help bring the tendon down > just that little > bit > > more, then I would agree to it. > > > > At any rate, I am glad that I have this group of > people to rely on > and > > appreciate all of your kind words! > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 Hey , Is he still planning to come on the 25th? I think Dr. Pirani will convince him by just telling him the medical facts. And explaining step by step the processes involved. The Ponseti method is not some 'alternative' kind of cf treatment, it is fast becoming the main treatment for this deformity. Give it a few more years and it will be the norm! Parents are just plain demanding it. It is forcing orthopedic surgeons that have resisted for years to even look at the data (because it does not involve surgery which is what they spent all those years in medical school studing then putting into practice)to change. Granted, your current doc does not jump right to surgery but her method of treating cf is not Ponseti which is just sooooo superior. I am sure your dh will see this when he speaks with Dr. Pirani. And if he doesn't come, you will see and you will be so resolute in the treatment Hayden should have!! I am sorry you are having to deal with this extra shi# but honestly, once Hayden is on the right track and you feel better about his care, everything else will work itself out I promise! ttys & Grace > > > > , the problem with fiberglass casts is that > the doc cannot > form them around the foot as " custom " as a plaster > cast, and it's > very key that the doc form the cast and hold the foot > totally exact > as it hardens, smoothing it in where it needs formed > to fit like a > glove. Like I said before, the bones in the foot have > to be placed > in a very specific, sequential manner to do any good > and held there > while casted. It's not a cast just anyone can apply > as perhaps a > broken-leg cast could be. There shouldn't be any > bruising. It > should be done slowly and methodically holding the > bones exactly as > it's done. > > > > The FAB (dbb) isn't going to stay on if his foot > isn't corrected to > begin with. The FAB is NOT to correct a foot but to > MAINTAIN > correction - big difference! Many docs seem to over > look that little > fact. > > > > Also, prior patients feet might look normal on the > out side but > that's no proof they will remain normal thorugh out > life. Have you > spoken to any adult patients or at least teen age/oder > kids whove > been treated here? What are theire results? > > > > The tenotomy is a very minor, one=time deal. My dh > stayed in with > our 2nd son while he had the tenotomy. It was one > little prick in > the heel and over with. Ten minutes or so start to > finish, numbing > the skin, pricking the tendon to release it, then > re-casting so the > foot would heal in the right position. Wiggling a > needs injecting a > burning agent sounds like hell to me compared to the > tenotomy. My > nephew got botox shots for a non-cf condition and he > says the pain > was unbearable. > > > > I still say you should seek alternative treatments > because it is > taking too long. Your kid should be done by now and > moved on to much > greener pastures in his treatment by this many weeks > in to the deal. > My 1st son's doctor really believed in what he was > doing too - and > had other " happy " patients, but he totally screwed up > my kid and I > didn't realize it until it was too late. It's not too > late for your > kid. > > Thanks to Everyone > > > > > > First off a great big thanks to so many caring and > concerned people > > for all of your responses, support and suggestions, > as well as > > direction to articles, etc. > > > > I feel I should clarify a few things so that you can > all have a > fuller > > understanding of the issues with Hayden's skin. It > is not my > > intention to bash on Dr. Alvarez because I feel that > she truly > > believes in what she is doing. And she has had > success, no doubt > > about it, as I have seen the older children that she > has treated > from > > infancy. They look fine and all of the parents seem > to think the > > Botox is a good idea and that it works. It is not > like Hayden has > not > > made progress, either. His feet are worlds > different from what they > > were at birth. I will post some photos so you can > see the > comparison. > > My biggest issues have been with her particular > bedside manner > > (blunt) and the fact that Hayden screams so much > when she is > examining > > him or when she was holding his foot in position for > the casting. > > When I took the casts off, there were often bruises > across the tops > of > > feet from where she had held his foot. This was > very disconcerting > > for me, but I was always told that this was normal. > Let me say that > > this did not offer me much reassurance. No one > likes to see their > > child marked in any way and while I understand that > the treatment is > > going to involve discomfort in some form along the > way, it honestly > > was starting to feel like ritual torture every week. > > > > The casts that Hayden had applied were fibreglass > with a batting- > type > > underlayer. I do not know what fibre it was, but it > appeared to be > > cotton. The final casts he had were put on with a > cotton flannel > > underlay which actually made his skin worse and was > stuck to his > skin > > in many places where it had been weeping. There has > been another > > little girl undergoing the same treatment as Hayden > with the same > > issues. Both babies were large at birth (Hayden 9 > pounds, Baby > Girl 9 > > pounds 13 ounces) which made them sweaty and overly > warm to start > > with. We had an unusually hot and humid summer this > year that did > not > > help. Having a cast on in that kind of heat must be > like wearing > > three pairs of pants under a snow suit in the > Bahamas! Knowing that > > the other child was enduring the same problems with > her skin made me > > think that this was not an allergic reaction. It > was suggested to > me > > that the reason his feet were taking longer to > correct was because > it > > was so hot - his feet were swollen and they could > not get a proper > > position each time. The second to last casts we had > on were done by > > another doctor because we were there on a different > day and I > noticed > > that he worked very hard to get a " heel " in the cast > and took his > > time. I did see a big difference after that cast > came off. That > > being said, the Club Foot Clinic at Children's is > very busy and I > know > > they are trying to see as many people as they can. > > > > I'm still feeling very uncertain about the boots and > bar. I think > > they are the Dennis Brown type. I kind of got a > " just tough it out " > > response when I expressed concerns about how well > they are fitting > him > > as they continue to slip on his feet or come > completely off. He's a > > real kicker and don't think for a moment he hasn't > realized he can > > free himself if he tries hard enough! I know that > some of the > > fussiness can come from them just not wanting to be > in them as they > > are restrictive. But when I see his foot has > slipped and he is > > cranky, I can't understand how that would be > comfortable and don't > > think that I should be having to replace/adjust them > all day long. > > How can they do their job if they don't fit > properly? I have tried > > the socks without seams and the socks with grips on > the bottom and > > neither seems better than the other. When I look at > Hayden's feet > in > > socks, the right foot seems to be be fine, but the > left does not > fill > > out the heel. > > > > I am interested in meeting with Dr. Pirani. If he > decides that > Hayden > > will need more casts, then I am okay with that but > it still brings > the > > skin issue along with it. And maybe he will have > other suggestions > to > > that end. I am not keen on the idea of a tenotomy, > but after > thinking > > about it a bit, I don't think that it is any more or > less invasive > > than the Botox treatment. The Botox consisted of > inserting the > needle > > and then moving it all around the tendon and > injecting it bit by > bit. > > I suppose if it would help bring the tendon down > just that little > bit > > more, then I would agree to it. > > > > At any rate, I am glad that I have this group of > people to rely on > and > > appreciate all of your kind words! > > > > > > > > > > > > > > > > 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.