Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 <<What makes me sad is when parents KNOW of the options and still CHOSE surgery. I can understand if they didn't know, and was treated surgically>> As a parent who's child has had surgery, I'm going to jump in here for a second. Particularlrly since I have one of the children with regression. 1. Even Ponsetti doesn't recommend his method for children with Arthrogryposis. (SEVERE clubfoot; Arthrogryposis also includes global malformations of muscle and joints). and Todd both have Arthrogyrposis. 2. has been wearing AFOs' since his surgery. And a DBB at night since last Fall (for 4 mos he wore his AFOs in the DBB). 3. receives 3 hours of PT a week, with someone who specializes in Arthrogyrposis and has been receiving that level of therapy since birth. 4. I'm not sure that there is anyone on the list who chose surgery OVER Ponsetti. We didn't even hear about Ponsetti until well after our surgery, and we have been online since 's birth and have traveled to the top doctors in NYC, and those specializing in Arthrogryposis in Seattle and Delaware. In fact, our surgeon was surprised to learn that I know all about the Ilizarov method, Ponsetti method and French physiotherapy method. 5. While I understand everyone's zeal on the Ponsetti method, there are relapse rates with it as well. Further, most orthopedists don't discuss the Ponsetti method as an option. However, for our child with Arthrogryposis, the radical PMR using the HSS method only has a 10% recurrance rate, and thats a 25 year study. Thanks for the image of the wounded animal. My son is going in for hand surgery in 2 weeks and has undergone anesthesia four times, and no not once has he sounded like a wounded animal, in fact on 3 of those four occasions he has woken up smiling. And yes we used the equivalent of Ponsetti on his hands--Myofascial Release, 24 hour serial splinting of the hands, and Occupational Therapy for 3 hours a week. since birth. However, when a child's joint is malformed and the tendon resembles spaghetti the only viable option is to do a tendon transfer. ~Maureen PS: I lurk here, as I want to learn more about the Ponsetti method. Additionally, my sister is a foot surgeon who will be attending Ponsetti's next training session to learn his method. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 CaseyWaid@... wrote: > 1. Even Ponsetti doesn't recommend his method for children with > Arthrogryposis. (SEVERE clubfoot; Arthrogryposis also includes global > malformations of muscle and joints). and Todd both have > Arthrogyrposis. Yeah, I was going to mention that a couple of parents on the clubfoot list (including yourself) have arthrogrypotic children. Surgery is indeed the only option for them. Masoner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2000 Report Share Posted September 22, 2000 (((Maureen))), Please don't be offended by this discussion on using non-surgical techniques as opposed to surgery. I think all of us are painfully aware that non-surgical techniques are not a panacea and do not work for all. We whose children have been candidates to use these methods have been the lucky, no blessed ones, and maybe we need to state that once in a while. Not every child and family dealing with this problem can do that. My used the French Physiotherapy method, yet still needed a heel cord release and a soft tissue release on each foot. The advantage in doing the non-surgical technique is that is minimized the need for surgery and sometimes that is the best we could have hoped for, under the circumstances. In other situations, like your little one's, surgery may very well be the only option. No shame in that. I think whay everyone is saying is that the surgery rate could be lowered in some cases if parents would look into the non-surgical techniques of treatment. Unfortunately, more severe cases still require surgery, and aren't we blessed that there are some wonderful, caring, and competent pediatric orthropedic surgeons out there. Much luck with your little one's treatment... Blessings, Pam > <<What makes me sad is when parents KNOW of the options and still > CHOSE surgery. I can understand if they didn't know, and was treated > surgically>> > > As a parent who's child has had surgery, I'm going to jump in here for a > second. Particularlrly since I have one of the children with regression. > > 1. Even Ponsetti doesn't recommend his method for children with > Arthrogryposis. (SEVERE clubfoot; Arthrogryposis also includes global > malformations of muscle and joints). and Todd both have > Arthrogyrposis. > 2. has been wearing AFOs' since his surgery. And a DBB at night > since last Fall (for 4 mos he wore his AFOs in the DBB). > 3. receives 3 hours of PT a week, with someone who specializes in > Arthrogyrposis and has been receiving that level of therapy since birth. > 4. I'm not sure that there is anyone on the list who chose surgery OVER > Ponsetti. We didn't even hear about Ponsetti until well after our surgery, > and we have been online since 's birth and have traveled to the top > doctors in NYC, and those specializing in Arthrogryposis in Seattle and > Delaware. In fact, our surgeon was surprised to learn that I know all about > the Ilizarov method, Ponsetti method and French physiotherapy method. > 5. While I understand everyone's zeal on the Ponsetti method, there are > relapse rates with it as well. Further, most orthopedists don't discuss the > Ponsetti method as an option. However, for our child with Arthrogryposis, > the radical PMR using the HSS method only has a 10% recurrance rate, and > thats a 25 year study. > > Thanks for the image of the wounded animal. My son is going in for hand > surgery in 2 weeks and has undergone anesthesia four times, and no not once > has he sounded like a wounded animal, in fact on 3 of those four occasions he > has woken up smiling. And yes we used the equivalent of Ponsetti on his > hands--Myofascial Release, 24 hour serial splinting of the hands, and > Occupational Therapy for 3 hours a week. since birth. However, when a > child's joint is malformed and the tendon resembles spaghetti the only viable > option is to do a tendon transfer. > > ~Maureen > > PS: I lurk here, as I want to learn more about the Ponsetti method. > Additionally, my sister is a foot surgeon who will be attending Ponsetti's > next training session to learn his method. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 how do you know if your child has what type of clubfoot? We were never told of any name except that he had clubfoot and it was severe. We are doing the Ponseti Method and are using the DBB . Zach has had some tightening of his heal cord but we were told to do a excersise to help keep it flexible. His foot looks good now but will it stay is the question. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 In a message dated 09/23/2000 6:42:18 PM Eastern Daylight Time, kwitkos862@... writes: > how do you know if your child has what type of clubfoot? We were never told > of any name except that he had clubfoot and it was severe. Arthrogryposis means that your child has more than one joint contracted and more than one muscle group that is malfored. Idiopathic simply means of unkown orgin. ~Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 > Arthrogryposis means that your child has more than one joint contracted and > more than one muscle group that is malfored. That's what I thought. I met a woman the other day with a young baby. She told me her son, who has clubfoot, has arthrogryposis. I asked her what joints are malformed in addition to the feet, and she told me that it was just his feet, but the doctor told her he has arthogryposis. As you can imagine, I was pretty confused. Would you know why she might have been saying her son is arthrogrypotic? I even said that I thought AMC (you know, MULTIPLEX as in MULTIPLE) diagnosis required involvment by several joints, and she just gave me that stare usually reserved for people talking about encounters with aliens. Masoner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 > As you can imagine, I was pretty confused. Would you know why she > might have been saying her son is arthrogrypotic? I even said that I > thought AMC (you know, MULTIPLEX as in MULTIPLE) diagnosis required > involvment by several joints, and she just gave me that stare usually > reserved for people talking about encounters with aliens. I guess her doctor doesn't know the difference. And if she has been told a specific diagnosis... There has to be more than one joint involved--and bilateral clubfoot doesn't count. We even asked if my sister might have AMC--she had bilateral dislocated hips and mettatarsus adductus and we were told nope, the feet weren't severe enough... I'm thinking her feet might have been mild clubfoot but at the time the protocal was casting from feet to armpit, and her orthopedist may have manipulated her feet, he's since retired... but its another thing to look into. ~Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 [i initally intended to send this message only to Sara, but as I am blocked from emailing her directly--it will have to go to the group. I didn't want to reopen this can of worms, but I did want to respond.] Sara--Thanks for the response. 1. I think those of you who haven't gone the surgery route need to remember two very important things: A. Doctors make the surgery route seem easier, doctors make surgery seem better. Therefore, you cannot blame parents who despite learning of both methods, don't fully understand them. Not everyone has the ability to accurately compare the two methods, and most rely on their doctors to give them guidance. Analogy: Formula vs. breastmilk. There are many intelligent parents out there, who despite knowing that breastmilk exists, and formula is inferior to breastmilk, decide to use formula. Why??? Mainly because they are ignorant of the facts, even when they have done some research. I don't think it helps to publicly have pity on them, or to make comments to them after the fact that giving their child breastmilk would have been a better choice... you cannot go back (ok some people are able to relactate, but most aren't).... Instead, those who support breastmilk need to understand why people (who biologically can breastfeed--and that is every biological mother save 5%--many women have difficulties bc they introduce bottles at the same time and actually sabotage their feeding method--sort of akin to short-leg casts) choose formula (an inferior and actually harder feeding method) over breastmilk (a better and actually easier feeding method) and how to reach people BEFORE they make their decision. B. It is never an easy decision to have surgery performed on your child. But again, here, doctors hold the most power. Many parents simply want the process DONE. And surgeons push surgery... Here the focus should be on surgeons-- and 's discussion with the surgeons on why others are resistent to the Ponsetti method is a good starting place. I would think that getting Dr. Ponsetti to help you all with an article for the Journal of American Orthopedics would be a good next step. That would reach the widest surgical audience. {As for those who choose surgery bc of monetary concerns or distances for traveling: I'm sure that happens, and I don't blame the parents, rather I place that blame squarely on the insurance industry... for us we have pulled out a credit card whenever alternative care, no matter the distance, is denied by our insurance company, we have filed appeals. However, not everyone has the financial ability--to go to whichever doctors they want--instead write a letter to your Congressmembers and Senators and tell them what you had to go through just to get your kid the healthcare she deserved, and what a crying shame it is that some kids don't have that care bc their insurance company says we'll pay for surgery but not months of casts and a DBB bar. Support the Family Opportunity Act!!} 2. While I understand that the no-surgery site is a haven for people and a support group it really is annoying to see a discussion about oneself and others similarly situated taken from the clubfoot list to the no-surgery list--the assumption (whether consious or unconcious): the kids with relapse had surgery, therefore they won't be on this list..) Me, I'm from Brooklyn, we're pretty up front about our opinions... I'd rather have someone on the clubfoot list, say " Wow, there seems to be a few relapses here... what do you guys think that is about? " As we've discussed some of the kids facing relapse don't have idiopathic clubfoot. And I think the other part of the answer is simply the age of the children... If you'll look the relapsee's are two or older...Many of the children on the list are about that age, and going through the first big growth spurt since infancy. A poll could be done... etc., 3. For us we saw the best surgeons in the States... They specialized in AMC, one doctor said they wouldn't do a thing with 's feet til 18mos and he should be standing on them and cruising before surgery (poor kid wouldn't even touch the ground with them, they hurt so much... so standing or walking seemed an absurd expectation) then he'd have another surgery at 2, another between 6-8 ,another in his teens..... (4 surgeries at least). Another surgeon said, no way, we'll do casts for a few months, then we'll do ONE surgery, relapse rate is 10%. Tell me, which one would you have picked? ~Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 > We need, perhaps, to be a little more sensitive to each other in that > regard. It is easy, without meaning to, to plug a method of medical > treatment, child care or education, or anything else so strongly that > it sounds like it is the only route that is right for all to use. I > don't believe that anyone here would intentionally do that, but I > guess, even without it meaning to, it could come off that way if we > are not too careful. And I'm not trying to stop people from plugging the Ponsetti method, just saying please: 1. In every post to newbies--please remind people that there is a difference between idiopathic and arthrogrypotic. 2. Really focus on getting the word out to DOCTORS... for most families by the time they've found out about Ponsetti or French physiotherapy they are already down the road to surgery. 3. BTW, interesting discussion with our surgeon: I had a journal article on the use of botox for clubfeet (so far works on kids who do not have any neuromuscular involvement)--they've been using it on kids with CP for awhile with great success, now trying it on idiopathic clubfoot to increase the ROM during manipulations. Anyway, the study is out of Dallas ish Rite, which is apparently doing a whole series of clubfoot studies: CPM, French Physiotherapy, Ilizrov, Ponsetti, Botox and PMR. My doc was pooh poohing the studies...essentially, your kid could end up with any range of things being done... I thought it looked like a good idea, to have one place study each of the different methods, replicating past studies adn being able to compare results on site with the same set of doctors.... ~Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 > [i initally intended to send this message only to Sara, but as I am blocked > from emailing her directly--it will have to go to the group. I didn't want to > reopen this can of worms, but I did want to respond.] > > Sara--Thanks for the response. > > 1. I think those of you who haven't gone the surgery route need to remember > two very important things: > > A. Doctors make the surgery route seem easier, doctors make surgery seem > better. Therefore, you cannot blame parents who despite learning of both > methods, don't fully understand them. Not everyone has the ability to > accurately compare the two methods, and most rely on their doctors to give > them guidance. > > Analogy: Formula vs. breastmilk. There are many intelligent parents out > there, who despite knowing that breastmilk exists, and formula is inferior to > breastmilk, decide to use formula. Why??? Mainly because they are ignorant > of the facts, even when they have done some research. I don't think it helps > to publicly have pity on them, or to make comments to them after the fact > that giving their child breastmilk would have been a better choice... you > cannot go back (ok some people are able to relactate, but most aren't).... > Instead, those who support breastmilk need to understand why people (who > biologically can breastfeed--and that is every biological mother save > 5%--many women have difficulties bc they introduce bottles at the same time > and actually sabotage their feeding method--sort of akin to short-leg casts) > choose formula (an inferior and actually harder feeding method) over > breastmilk (a better and actually easier feeding method) and how to reach > people BEFORE they make their decision. > > B. It is never an easy decision to have surgery performed on your child. > But again, here, doctors hold the most power. Many parents simply want the > process DONE. And surgeons push surgery... Here the focus should be on > surgeons-- and 's discussion with the surgeons on why others are > resistent to the Ponsetti method is a good starting place. I would think > that getting Dr. Ponsetti to help you all with an article for the Journal of > American Orthopedics would be a good next step. That would reach the widest > surgical audience. > > > {As for those who choose surgery bc of monetary concerns or distances for > traveling: I'm sure that happens, and I don't blame the parents, rather I > place that blame squarely on the insurance industry... for us we have pulled > out a credit card whenever alternative care, no matter the distance, is > denied by our insurance company, we have filed appeals. However, not > everyone has the financial ability--to go to whichever doctors they > want--instead write a letter to your Congressmembers and Senators and tell > them what you had to go through just to get your kid the healthcare she > deserved, and what a crying shame it is that some kids don't have that care > bc their insurance company says we'll pay for surgery but not months of casts > and a DBB bar. Support the Family Opportunity Act!!} > > 2. While I understand that the no-surgery site is a haven for people and a > support group it really is annoying to see a discussion about oneself and > others similarly situated taken from the clubfoot list to the no-surgery > list--the assumption (whether consious or unconcious): the kids with relapse > had surgery, therefore they won't be on this list..) Me, I'm from Brooklyn, > we're pretty up front about our opinions... I'd rather have someone on the > clubfoot list, say " Wow, there seems to be a few relapses here... what do you > guys think that is about? " As we've discussed some of the kids facing relapse > don't have idiopathic clubfoot. And I think the other part of the answer is > simply the age of the children... If you'll look the relapsee's are two or > older...Many of the children on the list are about that age, and going > through the first big growth spurt since infancy. A poll could be done... > etc., > > 3. For us we saw the best surgeons in the States... They specialized in > AMC, > one doctor said they wouldn't do a thing with 's feet til 18mos and he > should be standing on them and cruising before surgery (poor kid wouldn't > even touch the ground with them, they hurt so much... so standing or walking > seemed an absurd expectation) then he'd have another surgery at 2, another > between 6-8 ,another in his teens..... (4 surgeries at least). Another > surgeon said, no way, we'll do casts for a few months, then we'll do ONE > surgery, relapse rate is 10%. > > Tell me, which one would you have picked? > > ~Maureen Maureen brings up a very good point, No parent should ever feel guilty for a choice they have made for their child,I am sure there are enough " self-battering " feelings in the hearts of parents with children born with different-abilities. We are in a society that brought us up beleiving in our Dr's and that we are to do as they say. I am happy that the world has opened up and we are able to have information available in many forms so we can have options and hopefully make a correct decision individual to our personal situations. I am sure many physicians/surgeons look back and wish at times that they had techniques or surgeries that would have better served patients in the past. As far as recurrence goes it is my feeling that no matter what treatment has been chosen if a clubfoot is going to have a recurrence it happens and at that time you sit down with the Dr./Dr's and disscus the options. I also belive there will be feet that need more surgery then casting and there were cases talked about in Iowa. The clubfoot can be a Neuromuscular nightmare and they are tough feet. We have children who have had recurrence so early or severe that an MRI of the spine was ordered and they were found to have a tethered cord.Once they were released the correction of the foot was easier. Have any of you experienced this? The Cast Lady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Maureen, Didn't know you were from NY. I'm a Long Islander by way of the Bronx, Yonkers and a small town outside of Monticello. We don't mince words here either. :-) Sounds like you guys have been through the mill. In all honesty, ultimately had to have one minor surgical procedure besides the tenonomy. His original orthopaedist on the Island was a bit of a jerk and missed a badly misaligned talus and calcanus bone on the right foot and a slight and similar problem on the left, so a capsillectomy was done on each foot at the same time as the tenonomies, this past June. This was after 18 months of the French Physiotherapy method. We really felt bad at first that would have to endure surgery and do still worry about the possible foot pain and early onset of osteoarthritis that surgery can bring with it, but the good outweighed the bad. The bottom line was getting walking and he was not getting beyond cruising before the surgery. Now, thank God, can walk. So if the surgery was the only way to do it, then it had to be done, and we did it, doing everything we could to take the fear out of it for and make his recovery as comfortable as possible. Am I glad that we did the non-surgical treatment first? Absolutely. We have been told that, in his case, it lessened the need for surgery. Additionally, the surgery went extremely well. Much of the credit goes to the guided and talented hands of Dr. Gail Chorney and a whole lot of prayer, but some of it also goes to the fact that all of the previous treatment had non-surgically just made the whole thing easier. I think the problem here is that we all have to remember that although the non-surgical treatments for clubfeet can work beautifully for some, for others, like your little one, it is not even in the realm of possibility. There are also those that may be candidates for non-surgical treatments, but circumstances - lack of information, distance, money, etc., may make it impossible. For example, when I found out about the Ponseti method, was already too old to use it. Would it have saved him surgery? Who knows? Maybe, maybe not. The bottom line is, Ralph and I did all that we could with the information that we had at the time. Travel was not an option with recovery from a c-section and 4 other children to care for and teach with no other help from family or others. If I couldn't have gotten training from a video on the French Physiotherapy method, I don't know what we would have done, besides agonizing about it all. But we were blessed and got the training via video and it opening up a lot of doors for our son. We were also blessed in that our insurance covered the orthopaedists, hospital, AFO's, DBB's and 2 months of P/T to date with only co-pays for us to handle. We additionally had wonderful help from our circle of holistic practitioners, who all treated for free or a reduced rate. Many folks are not so fortunate and medical care, as all of us know, can cost a small (or not so small) fortune. It wasn't too long ago that we had lousy insurance, and more than once, I've wondered, " My God, what would we have done if our insurance wasn't so good, with 4 other children, and a house, and recovering from 5 yrs of severe underemployment and the debts incurred to survive that time to deal with? " The bottom line is that all of us must do what is in the best interest for our children, each and every one. Sometimes, that may take different directions. Does that make the route one takes better than the route another does? Of course not. I homeschool my children. I breastfeed my baby. Does that make me superior as a parent to the parent who does not homeschool or breastfeed? Of course not. I am doing what is, IMHO, the very best thing for my children. If you believe that you are doing the same, and I believe you do and are too, then you too are doing the very best that you can do for yours. We need, perhaps, to be a little more sensitive to each other in that regard. It is easy, without meaning to, to plug a method of medical treatment, child care or education, or anything else so strongly that it sounds like it is the only route that is right for all to use. I don't believe that anyone here would intentionally do that, but I guess, even without it meaning to, it could come off that way if we are not too careful. My apologies, Maureen, if I, in any of my posts, have said anything that could have made you feel that way. With all my heart, I wish you and your little guy all the best. Blessings, Pam > [i initally intended to send this message only to Sara, but as I am blocked > from emailing her directly--it will have to go to the group. I didn't want to > reopen this can of worms, but I did want to respond.] > > Sara--Thanks for the response. > > 1. I think those of you who haven't gone the surgery route need to remember > two very important things: > > A. Doctors make the surgery route seem easier, doctors make surgery seem > better. Therefore, you cannot blame parents who despite learning of both > methods, don't fully understand them. Not everyone has the ability to > accurately compare the two methods, and most rely on their doctors to give > them guidance. > > Analogy: Formula vs. breastmilk. There are many intelligent parents out > there, who despite knowing that breastmilk exists, and formula is inferior to > breastmilk, decide to use formula. Why??? Mainly because they are ignorant > of the facts, even when they have done some research. I don't think it helps > to publicly have pity on them, or to make comments to them after the fact > that giving their child breastmilk would have been a better choice... you > cannot go back (ok some people are able to relactate, but most aren't).... > Instead, those who support breastmilk need to understand why people (who > biologically can breastfeed--and that is every biological mother save > 5%--many women have difficulties bc they introduce bottles at the same time > and actually sabotage their feeding method--sort of akin to short- leg casts) > choose formula (an inferior and actually harder feeding method) over > breastmilk (a better and actually easier feeding method) and how to reach > people BEFORE they make their decision. > > B. It is never an easy decision to have surgery performed on your child. > But again, here, doctors hold the most power. Many parents simply want the > process DONE. And surgeons push surgery... Here the focus should be on > surgeons-- and 's discussion with the surgeons on why others are > resistent to the Ponsetti method is a good starting place. I would think > that getting Dr. Ponsetti to help you all with an article for the Journal of > American Orthopedics would be a good next step. That would reach the widest > surgical audience. > > > {As for those who choose surgery bc of monetary concerns or distances for > traveling: I'm sure that happens, and I don't blame the parents, rather I > place that blame squarely on the insurance industry... for us we have pulled > out a credit card whenever alternative care, no matter the distance, is > denied by our insurance company, we have filed appeals. However, not > everyone has the financial ability--to go to whichever doctors they > want--instead write a letter to your Congressmembers and Senators and tell > them what you had to go through just to get your kid the healthcare she > deserved, and what a crying shame it is that some kids don't have that care > bc their insurance company says we'll pay for surgery but not months of casts > and a DBB bar. Support the Family Opportunity Act!!} > > 2. While I understand that the no-surgery site is a haven for people and a > support group it really is annoying to see a discussion about oneself and > others similarly situated taken from the clubfoot list to the no- surgery > list--the assumption (whether consious or unconcious): the kids with relapse > had surgery, therefore they won't be on this list..) Me, I'm from Brooklyn, > we're pretty up front about our opinions... I'd rather have someone on the > clubfoot list, say " Wow, there seems to be a few relapses here... what do you > guys think that is about? " As we've discussed some of the kids facing relapse > don't have idiopathic clubfoot. And I think the other part of the answer is > simply the age of the children... If you'll look the relapsee's are two or > older...Many of the children on the list are about that age, and going > through the first big growth spurt since infancy. A poll could be done... > etc., > > 3. For us we saw the best surgeons in the States... They specialized in > AMC, > one doctor said they wouldn't do a thing with 's feet til 18mos and he > should be standing on them and cruising before surgery (poor kid wouldn't > even touch the ground with them, they hurt so much... so standing or walking > seemed an absurd expectation) then he'd have another surgery at 2, another > between 6-8 ,another in his teens..... (4 surgeries at least). Another > surgeon said, no way, we'll do casts for a few months, then we'll do ONE > surgery, relapse rate is 10%. > > Tell me, which one would you have picked? > > ~Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Not my son, Beth, and I pray that never becomes part of the picture... Counting My Blessings, Pam, Ralph, and Raphael > > [i initally intended to send this message only to Sara, but as I am > blocked > > from emailing her directly--it will have to go to the group. I > didn't want to > > reopen this can of worms, but I did want to respond.] > > > > Sara--Thanks for the response. > > > > 1. I think those of you who haven't gone the surgery route need to > remember > > two very important things: > > > > A. Doctors make the surgery route seem easier, doctors make > surgery > seem > > better. Therefore, you cannot blame parents who despite learning > of > both > > methods, don't fully understand them. Not everyone has the ability > to > > accurately compare the two methods, and most rely on their doctors > to give > > them guidance. > > > > Analogy: Formula vs. breastmilk. There are many intelligent > parents out > > there, who despite knowing that breastmilk exists, and formula is > inferior to > > breastmilk, decide to use formula. Why??? Mainly because they are > ignorant > > of the facts, even when they have done some research. I don't > think > it helps > > to publicly have pity on them, or to make comments to them after > the fact > > that giving their child breastmilk would have been a better > choice... you > > cannot go back (ok some people are able to relactate, but most > aren't).... > > Instead, those who support breastmilk need to understand why people > (who > > biologically can breastfeed--and that is every biological mother > save > > 5%--many women have difficulties bc they introduce bottles at the > same time > > and actually sabotage their feeding method--sort of akin to > short-leg casts) > > choose formula (an inferior and actually harder feeding method) > over > > breastmilk (a better and actually easier feeding method) and how to > reach > > people BEFORE they make their decision. > > > > B. It is never an easy decision to have surgery performed on your > child. > > But again, here, doctors hold the most power. Many parents simply > want the > > process DONE. And surgeons push surgery... Here the focus should > be > on > > surgeons-- and 's discussion with the surgeons on why > others are > > resistent to the Ponsetti method is a good starting place. I would > think > > that getting Dr. Ponsetti to help you all with an article for the > Journal of > > American Orthopedics would be a good next step. That would reach > the widest > > surgical audience. > > > > > > {As for those who choose surgery bc of monetary concerns or > distances for > > traveling: I'm sure that happens, and I don't blame the parents, > rather I > > place that blame squarely on the insurance industry... for us we > have pulled > > out a credit card whenever alternative care, no matter the > distance, > is > > denied by our insurance company, we have filed appeals. However, > not > > everyone has the financial ability--to go to whichever doctors they > > want--instead write a letter to your Congressmembers and Senators > and tell > > them what you had to go through just to get your kid the healthcare > she > > deserved, and what a crying shame it is that some kids don't have > that care > > bc their insurance company says we'll pay for surgery but not > months > of casts > > and a DBB bar. Support the Family Opportunity Act!!} > > > > 2. While I understand that the no-surgery site is a haven for > people and a > > support group it really is annoying to see a discussion about > oneself and > > others similarly situated taken from the clubfoot list to the > no-surgery > > list--the assumption (whether consious or unconcious): the kids > with relapse > > had surgery, therefore they won't be on this list..) Me, I'm from > Brooklyn, > > we're pretty up front about our opinions... I'd rather have someone > on the > > clubfoot list, say " Wow, there seems to be a few relapses here... > what do you > > guys think that is about? " As we've discussed some of the kids > facing relapse > > don't have idiopathic clubfoot. And I think the other part of the > answer is > > simply the age of the children... If you'll look the relapsee's are > two or > > older...Many of the children on the list are about that age, and > going > > through the first big growth spurt since infancy. A poll could be > done... > > etc., > > > > 3. For us we saw the best surgeons in the States... They > specialized in > > AMC, > > one doctor said they wouldn't do a thing with 's feet til > 18mos and he > > should be standing on them and cruising before surgery (poor kid > wouldn't > > even touch the ground with them, they hurt so much... so standing > or > walking > > seemed an absurd expectation) then he'd have another surgery at 2, > another > > between 6-8 ,another in his teens..... (4 surgeries at least). > Another > > surgeon said, no way, we'll do casts for a few months, then we'll > do > ONE > > surgery, relapse rate is 10%. > > > > Tell me, which one would you have picked? > > > > ~Maureen > > > Maureen brings up a very good point, No parent should ever feel > guilty > for a choice they have made for their child,I am sure there are enough > " self-battering " feelings in the hearts of parents with children born > with different-abilities. > We are in a society that brought us up beleiving in our Dr's and > that we are to do as they say. I am happy that the world has opened > up > and we are able to have information available in many forms so we can > have options and hopefully make a correct decision individual to our > personal situations. I am sure many physicians/surgeons look back and > wish at times that they had techniques or surgeries that would have > better served patients in the past. > As far as recurrence goes it is my feeling that no matter what > treatment has been chosen if a clubfoot is going to have a recurrence > it happens and at that time you sit down with the Dr./Dr's and > disscus > the options. I also belive there will be feet that need more surgery > then casting and there were cases talked about in Iowa. The clubfoot > can be a Neuromuscular nightmare and they are tough feet. > We have children who have had recurrence so early or severe that > an > MRI of the spine was ordered and they were found to have a tethered > cord.Once they were released the correction of the foot was easier. > Have any of you experienced this? > > The Cast Lady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2000 Report Share Posted September 28, 2000 Thanks for the links, Maureen. I'll check them out next week. This week has been non-stop! Let me know about the Botox info. Blessings, Pam > In a message dated 09/27/2000 11:37:32 PM Eastern Daylight Time, > Rpc753@a... writes: > > > > > I knew about Botox, but not ish rite's study. I have some grave > > concerns about it. Do you have any specific info on that study. > > > > Also, can you e-mail me any info and links on anthrogrypotic (Did I > > spell that right? :::giggle:: clubfeet? I'd like to get myself > > better educated on that issue... > > > > > It'll take me a day or two on the Botox study--so far its just the > preliminary study (4 feet) but apparently there are more children in that > study--and it references other botox studies. > > Yes, agreed on the orthotists, pts etc. > On a side note: We have found the BEST orthotists in the WORLD. She is an > OT who went back and got trained as an orthotist, she spends loads of TIME > observing with his braces, without, and really tries to work with our > team to get the best brace for . (Support by Design in Manhattan). > > <A HREF= " http://members.aol.com/amcchat/amcinfo.htm " >Arthrogryposis</A> > <A HREF= " http://www.sonnet.com/avenues/ " >AVENUES</A> > <A HREF= " http://www.pcnet.com/~orphan/ " >National Organization for Rare > Disorders, Inc...</A> > <A HREF= " http://www.sonnet.com/avenues/pamphlet.html " >Arthrogryposis Pamphlet > </A> > <A HREF= " http://orthoweb.unicall.be/o12/110.htm " >Wheeless' Textbook of > Orthopaedics</A> > <A > HREF= " http://www.northcott.org.au/html/arthrogryposis_and_related_cond itions.h > > tml " >Arthrogryposis and related conditions</A> > <A > HREF= " http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query? form=4 & db=m & term=arm > > %5BMESH% 5DAND+arthrogryposis & dispmax=100 & relpubdate=No+Limit " >PubMed medline > query-arthrogryposis</A> > <A HREF= " http://kidshealth.org/ai/service/arthrogryposis.html " >duPont > Hospital for Children - Arthrogryposis...</A> > > ~Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2000 Report Share Posted September 28, 2000 Thanks for the info, . I'm going to check this and the other links from Maureen out next week. Blessings, Pam > > > BOTOX: I've seen a few studies in which botulism toxin is used in > clubfoot treatment. > > Anyway, if you go to http://www.clubfoot.net/medical.php3 and type > in " clubfoot botox " in the MEDLINE search box, you can see the > studies for yourself. It's pretty neat stuff. > > Ricahrd Masoner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Maureen, I read your argument to Sara and realize you had only intended for her to have to read it but you posted it so I'm going to comment on it. (Only on the " breastfeeding Issue " . ) I personally took offense to your analogy of why some mothers prefer to bottle feed because we must obviously be ignorant. Quite the contrary! I have two beautiful , healthy girls that were both bottle fed by my and my husband's choice. I have read all the reports and listened to all the parents and doctors who claim that breast milk is better. I am by all means not saying that it isn't but I believe that formula is just as healthy for babies. They say that formula fed babies tend to be at a greater risk of ear infections and can't fight off other infections as well as breast fed babies. I have many friends who's children have been on antibiotics for bacterial infections and ear infections and most of them were breast fed infants. My 3 1/2 year old daughter and her 7 1/2 month old sister have never had more that a cold (less than 3 a year) which I know in this day and age is very unusual since many children are in daycare and are ''exposed " to a lot more illnesses, and has only ever had the flu once in her 3 1/2 years. Neither of the girls have ever been put on an antibiotic for any reason and I personally think that is amazing in itself. I feel that the decision to breastfeed or not is a very personal decision and no one should ever be condemned or feel they are doing their child some great injustice because they chose to feed their babies with a bottle instead of a breast. I personally am sick and tired of hearing about all these remarks about us moms who chose the bottle because it was some kind of convenience for us NOT to breastfeed. Well let me tell you, I stay home with my girls every day and raise them and take care of them. I feel fortunate that I can do that. I don't think there are many families now days that can actually say they can " afford " it but we choose to do it anyway. I know many families that can't for many different reasons but I know just as many who can and simply don't. So to say that my life is " convenience " by how I feed my children would be an all out untruth! Being a stay at home mom I think is one of the most important things I could ever do for my children. Believe me, I should know. My husband is a juvenile probation officer and he comes home with the same stories every night. He deals with children who's parents could care less about their own childs existence and only about themselves and their personal needs. Please remember Maureen, there are very good parents on this group and although we all feel very free to express our thoughts and feelings we also try to remember others feelings at the same time. I have not been on the group for a very long time but up until now I have never felt judged by another parent for my decisions. That is part of what is so nice about this group. We are complete strangers that have come together because of a common situation and gather strength from eachother. I feel you need to re-evaluate why you are even on this group. I have been keeping up with the postings and I find your comments somewhat informational but also very defensive. I feel for your situation just as I do the other families. I hope everything goes well for your children, children are innocent and not one ever deserves anything less than a healthy, happy existence. But as we all know unfortunately that is not always the case. Holly Re: Clubfoot Relapse >[i initally intended to send this message only to Sara, but as I am blocked >from emailing her directly--it will have to go to the group. I didn't want to >reopen this can of worms, but I did want to respond.] > >Sara--Thanks for the response. > >1. I think those of you who haven't gone the surgery route need to remember >two very important things: > >A. Doctors make the surgery route seem easier, doctors make surgery seem >better. Therefore, you cannot blame parents who despite learning of both >methods, don't fully understand them. Not everyone has the ability to >accurately compare the two methods, and most rely on their doctors to give >them guidance. > >Analogy: Formula vs. breastmilk. There are many intelligent parents out >there, who despite knowing that breastmilk exists, and formula is inferior to >breastmilk, decide to use formula. Why??? Mainly because they are ignorant >of the facts, even when they have done some research. I don't think it helps >to publicly have pity on them, or to make comments to them after the fact >that giving their child breastmilk would have been a better choice... you >cannot go back (ok some people are able to relactate, but most aren't).... >Instead, those who support breastmilk need to understand why people (who >biologically can breastfeed--and that is every biological mother save >5%--many women have difficulties bc they introduce bottles at the same time >and actually sabotage their feeding method--sort of akin to short-leg casts) >choose formula (an inferior and actually harder feeding method) over >breastmilk (a better and actually easier feeding method) and how to reach >people BEFORE they make their decision. > >B. It is never an easy decision to have surgery performed on your child. >But again, here, doctors hold the most power. Many parents simply want the >process DONE. And surgeons push surgery... Here the focus should be on >surgeons-- and 's discussion with the surgeons on why others are >resistent to the Ponsetti method is a good starting place. I would think >that getting Dr. Ponsetti to help you all with an article for the Journal of >American Orthopedics would be a good next step. That would reach the widest >surgical audience. > > >{As for those who choose surgery bc of monetary concerns or distances for >traveling: I'm sure that happens, and I don't blame the parents, rather I >place that blame squarely on the insurance industry... for us we have pulled >out a credit card whenever alternative care, no matter the distance, is >denied by our insurance company, we have filed appeals. However, not >everyone has the financial ability--to go to whichever doctors they >want--instead write a letter to your Congressmembers and Senators and tell >them what you had to go through just to get your kid the healthcare she >deserved, and what a crying shame it is that some kids don't have that care >bc their insurance company says we'll pay for surgery but not months of casts >and a DBB bar. Support the Family Opportunity Act!!} > >2. While I understand that the no-surgery site is a haven for people and a >support group it really is annoying to see a discussion about oneself and >others similarly situated taken from the clubfoot list to the no-surgery >list--the assumption (whether consious or unconcious): the kids with relapse >had surgery, therefore they won't be on this list..) Me, I'm from Brooklyn, >we're pretty up front about our opinions... I'd rather have someone on the >clubfoot list, say " Wow, there seems to be a few relapses here... what do you >guys think that is about? " As we've discussed some of the kids facing relapse >don't have idiopathic clubfoot. And I think the other part of the answer is >simply the age of the children... If you'll look the relapsee's are two or >older...Many of the children on the list are about that age, and going >through the first big growth spurt since infancy. A poll could be done... >etc., > >3. For us we saw the best surgeons in the States... They specialized in >AMC, >one doctor said they wouldn't do a thing with 's feet til 18mos and he >should be standing on them and cruising before surgery (poor kid wouldn't >even touch the ground with them, they hurt so much... so standing or walking >seemed an absurd expectation) then he'd have another surgery at 2, another >between 6-8 ,another in his teens..... (4 surgeries at least). Another >surgeon said, no way, we'll do casts for a few months, then we'll do ONE >surgery, relapse rate is 10%. > >Tell me, which one would you have picked? > >~Maureen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Holly-- As you rightly point out, I did not intend for my response to go the full group only Sara. And perhaps you did not get my analogy... I AGREE with you, and perhaps your long post, truly illustrates my feelings exactly, I took my analogy from another board... and simply tried to illustrate the differences between the two methods. In this context, ignorant does not mean dumb rather it means that perhaps with more information or help someone might have made a different decision. Perhaps not. If its perhaps not, then that is OK!! However, if you said if you'd only had more help getting your child to latch, or if you had known that early introduction of bottles would undermine your effort to breastfeed, then if you'd had more information or more assistance (a knowledgeable doctor who had laid out the whys and the hows) then the ignorance lies there... get it?? Yes, I've had a recent spate of annoyed posts, here. But in reality.... My sister is now on her way to bringing the Ponsetti to her corner of the world, two other doctors I work with are also bringing Ponsetti to their world. Yes you are blessed that you heard about the Ponsetti method before surgery, that your doctors where willing to try it, or you found someone before surgery to help out. As someone who did tons of research, and only came across the method briefly and thought that the shortleg casts being and manipulations my infant son had for 2 months were the Ponsetti method, I'm the devils advocate here reminding you all, what other things need to be done so other parents choose Ponsetti. I was ignorant, and it wasn't my fault. I'm sorry if I offended you, I only used the analogy to illustrate how those of us who've chosen or had surgery chosen for us feel in this context. And your post clearly illustrates my feelings on the matter. :-) Friends?? ~Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 AMC does mean Arthrogryposis Multiplex Congentia, which is as the name implies multiple (many) congenital (inherited) arthrogryposis (joint contractures). The term " arthrogryposis " itself is just a name for joint contractures and not a name for a specific disease or illness. Dr. Ponseti diagnosed my son, , with arthrogryposis and it is only in his ankles. I hope that wasn't me you were talking about, because I studied up on the subject the very day Dr. Ponseti diagnosed so the question was certainly not " alien " to me!!!! > > Arthrogryposis means that your child has more than one joint > contracted and > > more than one muscle group that is malfored. > > > That's what I thought. I met a woman the other day with a young > baby. She told me her son, who has clubfoot, has arthrogryposis. I > asked her what joints are malformed in addition to the feet, and she > told me that it was just his feet, but the doctor told her he has > arthogryposis. > > As you can imagine, I was pretty confused. Would you know why she > might have been saying her son is arthrogrypotic? I even said that I > thought AMC (you know, MULTIPLEX as in MULTIPLE) diagnosis required > involvment by several joints, and she just gave me that stare usually > reserved for people talking about encounters with aliens. > > Masoner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 AMC does mean Arthrogryposis Multiplex Congentia, which is as the name implies multiple (many) congenital (inherited) arthrogryposis (joint contractures). The term " arthrogryposis " itself is just a name for joint contractures and not a name for a specific disease or illness. Dr. Ponseti diagnosed my son, , with arthrogryposis and it is only in his ankles. I hope that wasn't me you were talking about, because I studied up on the subject the very day Dr. Ponseti diagnosed so the question was certainly not " alien " to me!!!! > > Arthrogryposis means that your child has more than one joint > contracted and > > more than one muscle group that is malfored. > > > That's what I thought. I met a woman the other day with a young > baby. She told me her son, who has clubfoot, has arthrogryposis. I > asked her what joints are malformed in addition to the feet, and she > told me that it was just his feet, but the doctor told her he has > arthogryposis. > > As you can imagine, I was pretty confused. Would you know why she > might have been saying her son is arthrogrypotic? I even said that I > thought AMC (you know, MULTIPLEX as in MULTIPLE) diagnosis required > involvment by several joints, and she just gave me that stare usually > reserved for people talking about encounters with aliens. > > Masoner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 allison_red@... wrote: > The term " arthrogryposis " itself is just a > name for joint contractures and not a name for a specific disease or > illness. Okay. > I hope that wasn't me you were talking about, because I studied up on > the subject the very day Dr. Ponseti diagnosed so the > question was certainly not " alien " to me!!!! It was you and . I meant " alien " in terms of " this-guy--doesn't-know-what-he's-talking-about-and-I-really- don't-feel-like-explaining-it-right-now " kind of look. Alien was just... shorter :-) I was the guy walking around with the camera. Peace, Masoner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 I don't think I meant to give you that kind of look, I was probably just distracted wondering where all my kids were...mind splitting in five directions all the time. I hope I wasn't rude!?! If so, S-O-R-R-Y. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 S wrote: > directions all the time. I hope I wasn't rude!?! No, you weren't rude at all. There were a lot of people around all trying to talk at once :-) Masoner Quote Link to comment Share on other sites More sharing options...
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