Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 , Thank you, thank you, thank you! I also appreciate you being brave enough to post this on the board and not just email me privately. I think there are probably others out there who are afraid to post after seeing what I have been through this week as well. I am looking into the AFOs and will discuss them with the dr. I have a friend who did not do Ponsetti and used them and they have had great results so far, her daughter is 17. I will check out the other group also and will continue to update here with whatever our final decision is. Thanks again, Jen michelle lea wrote: Jen, I also have a son who is now 10 months old. The shoes did not work for Simon; his doctor put him in afo's. They are less confining and alot easier to handle. I may get bashed for putting this out on this group because " Ponsetti " doesn't approve, but that is what works for me. The choice is yours and you do what needs to be done for your son ,I know how you feel about all yhe comments, but I got them to when I posted that Simon was in afo's, but I just take it with a grain of salt. The other mothers are just trying to help and they do not mean to offend anyone. Everyone has their own opnion. There is another yahoo group called clubfoot they have many members and I believe alot of their children may have had alternate treament. They are alot of support. Just a thought. You can vent anytime you would like it is okay by me. & Simon >From: Jen Drew >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Zach >Date: Wed, 7 Jan 2004 19:10:29 -0800 (PST) > >I am not just looking for a quick fix first thing. I was very offended by >that. I have had plenty of surgeries too and I know they hurt. I cried >when they took him for his tenotomy but he is a very happy baby normally >and he is truly miserable in his brace. We do not live near the doctor or >orthosist so we cannot run in for an adjustment every day. It has to very >planned for us to drive 150 miles with twins while I am student teaching >and graduating in a few months and my husband owns a retail store. As I >said in my other response we are open to suggestions but not by the >coordinator. She obviously has never had a child with this. I understand >she probably deals with noncompliant people every day but we have tried >EVERYTHING and he is still miserable. I think we already have the new >shoes. How do you tell the difference? Someone suggested turning the shoe >out slowly and I think that would be the best idea. After some more >casting of course. Anyway, please let me hang in > there and vent when I need to without judging me. You have not walked a >mile in my shoes or heard his cries of pain with the brace on. We will >make an educated decision that is best for him and our family when we have >all of the facts. We are not just jumping lightly into surgery. I'm sorry >if you consider this a rude response but I really am a good mommy and I >felt like you were questioning my abilities. > >Jen > >Robin Lane wrote: >I agree with Kori and just want to say that surgery is always invasive and >weakens the body. Sometimes the payoff is worth it, such as in open heart >surgery or cleft palate repair. Or for those 5% of children that the >Ponseti treatment does not work for. However, to give up on the shoes and >expect surgery to be a quick fix.....Please think seriously about this. >Would you hurt your back and had the choice of physical therapy every day >for two years with a 95% success rate or surgery, what would you do? >Whatever that answer is, is perhaps the right answer for you and your >child. > >Robin & Rose. > >Kori Rush wrote: >I agree. I read this website when I first started looking for info about >CF and it scared the heck out of me. Surgery seems like such an easy fix >but it's no walk in the park. I've had surgeries, they hurt. Having a >shoe that hurts isn't fun... but surgery REALLY hurts. Trading the >discomfort experienced now with discomfort and/or pain for the rest of >their life doesn't seem like a fair trade to me. > >There's something wrong with this picture. Some of it may be he's older >and more upset but it is more than likely that his feet are still sore from >before. Being that he's not entirely healed he can't go back into a shoe >that rubbed or pressed in the sore area. If it were me I'd go back to >casts again. Terrible as that may seem a few weeks in casts should give >that tissue time to really heal. Then try the shoes again but I'd make >sure I had the new style. > >The main point is that the shoes should NOT cause problems unless something >is wrong. Not finding and fixing whatever problem it is will only keep the >problems going. But there is a fix... it just needs to be found. There >are also other shoes available if these don't ever work, the >shoes might be an option in this case - Jen, you might want to seriously >consider contacting him about them. There *are* options other than surgery >but when a mama is tired and a baby is screaming it's hard to see what is >the best choice right now. I sympathize with anyone going through this, I >remember... it is not fun. Fortunately I am convinced this is the way to >go and had a good orthotist who was willing to do something unconventional >to try to help. At one point though I thought seriously about AFO's which >I know now would never have been the right choice. > >Something else to consider, the distance between his heels. Is it the same >as his shoulder width? Not the length of the bar, but the distance heel to >heel when they're set at the proper degree. Perhaps this is part of the >problem? What degree are the shoes set at? What was the last cast >at? Were the healing casts set as far as the post-tenotomy casts? You >never mentioned which shoes you had, are they the new ones or old? There >are lots of variables for finding problems and solutions but I'm convinced >that one is out there and I really hope it's not surgery. > >Here's a thought... in case it actually is the bar that's bothering him, >or the combination of sore feet and the inability to move them >independently... what about casting the bar into the casts? That way he'd >get a chance to have pain free healing, yet get him used to the bar while >in the casts? Dunno if the doc would go for it but it might be worth the >suggestion. If it proved to be just too much they could be soaked off at >home. > >Don't give up quite yet... There's more help out there, and lots of options >available. I'm sure someone will come up with something that works for you >and the little man. :~} > >Kori > > > > >At 12:51 PM 1/7/04, you wrote: > >Message: 22 > > Date: Tue, 6 Jan 2004 14:36:47 -0800 (PST) > > From: Jen Drew > >Subject: Re: Dr. Dobb's replied to my email and his nurse just called.... > > > >Well, we tried the brace again last night and after 2 hours of constant > >trying > >agreed to leave it off completely until we go on the 22nd. I know this >may > >seem > >bad to some of you but we are leaning towards the surgery at 10 months >and > >no > >more brace. I'll keep everyone updated. > > > >Hi Jen, > > > >I haven't been keeping up with the posts lately, but just read your >recent > >post about going with the surgery. > > > >Wanted to share this website I found. It describes one family's >experience > >with the surgery. It seems to me that the discomfort children experience > >from the bar would be very mild compared to that of surgery. > >http://www.angelfire.com/oh/clubfoot/myson/index.html > > > >Also, from what I understand, the long term outcomes for some types of > >surgery are not good. As young adults, they have pain when walking, > >arthritis. > > > >The brace can be challenging, but dealing with major surgeries could be >much > >worse.... > > > >I can't imagine what you must be going through, so feel free to ignore my >2 > >cents! My thoughts are with you. Hope everything works out for the >best!!! > >Joanne W. > >mom to Zoe (3-25-01, right clubfoot) > > > >_________________________________________________________________ > >Take advantage of our limited-time introductory offer for dial-up >Internet > >access. http://join.msn.com/?page=dept/dialup > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 , Thank you, thank you, thank you! I also appreciate you being brave enough to post this on the board and not just email me privately. I think there are probably others out there who are afraid to post after seeing what I have been through this week as well. I am looking into the AFOs and will discuss them with the dr. I have a friend who did not do Ponsetti and used them and they have had great results so far, her daughter is 17. I will check out the other group also and will continue to update here with whatever our final decision is. Thanks again, Jen michelle lea wrote: Jen, I also have a son who is now 10 months old. The shoes did not work for Simon; his doctor put him in afo's. They are less confining and alot easier to handle. I may get bashed for putting this out on this group because " Ponsetti " doesn't approve, but that is what works for me. The choice is yours and you do what needs to be done for your son ,I know how you feel about all yhe comments, but I got them to when I posted that Simon was in afo's, but I just take it with a grain of salt. The other mothers are just trying to help and they do not mean to offend anyone. Everyone has their own opnion. There is another yahoo group called clubfoot they have many members and I believe alot of their children may have had alternate treament. They are alot of support. Just a thought. You can vent anytime you would like it is okay by me. & Simon >From: Jen Drew >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Zach >Date: Wed, 7 Jan 2004 19:10:29 -0800 (PST) > >I am not just looking for a quick fix first thing. I was very offended by >that. I have had plenty of surgeries too and I know they hurt. I cried >when they took him for his tenotomy but he is a very happy baby normally >and he is truly miserable in his brace. We do not live near the doctor or >orthosist so we cannot run in for an adjustment every day. It has to very >planned for us to drive 150 miles with twins while I am student teaching >and graduating in a few months and my husband owns a retail store. As I >said in my other response we are open to suggestions but not by the >coordinator. She obviously has never had a child with this. I understand >she probably deals with noncompliant people every day but we have tried >EVERYTHING and he is still miserable. I think we already have the new >shoes. How do you tell the difference? Someone suggested turning the shoe >out slowly and I think that would be the best idea. After some more >casting of course. Anyway, please let me hang in > there and vent when I need to without judging me. You have not walked a >mile in my shoes or heard his cries of pain with the brace on. We will >make an educated decision that is best for him and our family when we have >all of the facts. We are not just jumping lightly into surgery. I'm sorry >if you consider this a rude response but I really am a good mommy and I >felt like you were questioning my abilities. > >Jen > >Robin Lane wrote: >I agree with Kori and just want to say that surgery is always invasive and >weakens the body. Sometimes the payoff is worth it, such as in open heart >surgery or cleft palate repair. Or for those 5% of children that the >Ponseti treatment does not work for. However, to give up on the shoes and >expect surgery to be a quick fix.....Please think seriously about this. >Would you hurt your back and had the choice of physical therapy every day >for two years with a 95% success rate or surgery, what would you do? >Whatever that answer is, is perhaps the right answer for you and your >child. > >Robin & Rose. > >Kori Rush wrote: >I agree. I read this website when I first started looking for info about >CF and it scared the heck out of me. Surgery seems like such an easy fix >but it's no walk in the park. I've had surgeries, they hurt. Having a >shoe that hurts isn't fun... but surgery REALLY hurts. Trading the >discomfort experienced now with discomfort and/or pain for the rest of >their life doesn't seem like a fair trade to me. > >There's something wrong with this picture. Some of it may be he's older >and more upset but it is more than likely that his feet are still sore from >before. Being that he's not entirely healed he can't go back into a shoe >that rubbed or pressed in the sore area. If it were me I'd go back to >casts again. Terrible as that may seem a few weeks in casts should give >that tissue time to really heal. Then try the shoes again but I'd make >sure I had the new style. > >The main point is that the shoes should NOT cause problems unless something >is wrong. Not finding and fixing whatever problem it is will only keep the >problems going. But there is a fix... it just needs to be found. There >are also other shoes available if these don't ever work, the >shoes might be an option in this case - Jen, you might want to seriously >consider contacting him about them. There *are* options other than surgery >but when a mama is tired and a baby is screaming it's hard to see what is >the best choice right now. I sympathize with anyone going through this, I >remember... it is not fun. Fortunately I am convinced this is the way to >go and had a good orthotist who was willing to do something unconventional >to try to help. At one point though I thought seriously about AFO's which >I know now would never have been the right choice. > >Something else to consider, the distance between his heels. Is it the same >as his shoulder width? Not the length of the bar, but the distance heel to >heel when they're set at the proper degree. Perhaps this is part of the >problem? What degree are the shoes set at? What was the last cast >at? Were the healing casts set as far as the post-tenotomy casts? You >never mentioned which shoes you had, are they the new ones or old? There >are lots of variables for finding problems and solutions but I'm convinced >that one is out there and I really hope it's not surgery. > >Here's a thought... in case it actually is the bar that's bothering him, >or the combination of sore feet and the inability to move them >independently... what about casting the bar into the casts? That way he'd >get a chance to have pain free healing, yet get him used to the bar while >in the casts? Dunno if the doc would go for it but it might be worth the >suggestion. If it proved to be just too much they could be soaked off at >home. > >Don't give up quite yet... There's more help out there, and lots of options >available. I'm sure someone will come up with something that works for you >and the little man. :~} > >Kori > > > > >At 12:51 PM 1/7/04, you wrote: > >Message: 22 > > Date: Tue, 6 Jan 2004 14:36:47 -0800 (PST) > > From: Jen Drew > >Subject: Re: Dr. Dobb's replied to my email and his nurse just called.... > > > >Well, we tried the brace again last night and after 2 hours of constant > >trying > >agreed to leave it off completely until we go on the 22nd. I know this >may > >seem > >bad to some of you but we are leaning towards the surgery at 10 months >and > >no > >more brace. I'll keep everyone updated. > > > >Hi Jen, > > > >I haven't been keeping up with the posts lately, but just read your >recent > >post about going with the surgery. > > > >Wanted to share this website I found. It describes one family's >experience > >with the surgery. It seems to me that the discomfort children experience > >from the bar would be very mild compared to that of surgery. > >http://www.angelfire.com/oh/clubfoot/myson/index.html > > > >Also, from what I understand, the long term outcomes for some types of > >surgery are not good. As young adults, they have pain when walking, > >arthritis. > > > >The brace can be challenging, but dealing with major surgeries could be >much > >worse.... > > > >I can't imagine what you must be going through, so feel free to ignore my >2 > >cents! My thoughts are with you. Hope everything works out for the >best!!! > >Joanne W. > >mom to Zoe (3-25-01, right clubfoot) > > > >_________________________________________________________________ > >Take advantage of our limited-time introductory offer for dial-up >Internet > >access. http://join.msn.com/?page=dept/dialup > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Kori, I was not offended by your post. I am just very stressed. I have not had time to write back until now but here is what we have already tried: they have never offered going back to casts but that is what I am going to propose, we have done the tongue in, out, and with different padding, we have laced up and laced down, we put them on once when he was asleep and it lasted 1/2 an hour before the screaming began, we may try that one again. I do not know about the shoes in New Mexico or the shoes. How do I know what kind I have? His heels are down we have measured that. They told us specifically not to take the shoes off of the bar so we have not tried that either. This doctor is the only one close to us and he is 150 miles away. He trained as a resident under Dr. Ponsetti so I really do think he knows what he is doing and we are happy with him. The shoes do not have a seam so they must be the new ones. We do not have any of the casts, they were never offered to us so I cannot check the level of degrees on them but I know the bar is at 70. Is this something we can adjust on our own or does someone at Shriners have to do it? I don't know what is up with his coordinator and me. I know other people really like her but she talks down to me and offers suggestions contrary to what the doctor has said. She also bashed me for not doing the excercises for the first 6 months when she never told me anything about them! She finally admitted in front of the dr. that our chart did never say anything about anyone showing us the excercise. Ugh! Again, we are not making any drastic decisions and I do appreciate the advice. Jen Quote Link to comment Share on other sites More sharing options...
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