Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 I haven't received any messages for awhile, and it has been several months since I posted anything; however, my son finished casting last week and is in the DBB and AFO braces. He hates the bar, and I know this is not uncommon at first, yet he kicks his legs so much he loosens the shoes. The leather is new, so I can't keep the strap tight enough. His foot is at the very end of the shoes, so could this cause a problem if the shoes were to small. One last question- When your kids got their casts removed did they hate having their feet touched. He was just over 2 weeks old when we started casting, and now he hates it if we or anything touches his feet. Thanks for the help! - bilateral clubfeet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 If your son is in the DBB 23/7, what are the AFO's for? Try to get the shoes as tight as possible! Make sure the heel is all the way down. Is uncomfortable? Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Thanks for your reply. Our dr. stated he only needed to wear the shoes when he sleeps. I know this goes against Ponseti, so I have been leaving the shoes on longer; however, he is so unhappy in them, that I do take them off midday and put the braces on so he can kick around. Is there a trick to making sure the heel is down because I think it is, but it is very hard to tell especially when he is kicking and pulling with all his mite to get his foot out. Thanks again. > If your son is in the DBB 23/7, what are the AFO's for? Try to get the > shoes as tight as possible! Make sure the heel is all the way down. Is > uncomfortable? > > > > > > > Shook > Retail Operations Manager/Baking Instructor > Vie de France Yamazaki, Inc. > 2070 Chain Bridge Rd. Suite 500 > Vienna, VA 22182 > x374 > x374 > fax > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 , we've been exactly where you are. Aidan also hated the shoes and his toes where at the very end of the shoes, almost hanging over. After about 3 days he got used to them and we haven't had any problems. We've been 23/7 for about a month and half and his toes are way over the ends. We haven't had problems with loose shoes but I always had my husband pull the strap as tight as possible, I just didn't have the hand strenght to get them where the orthotist put them. Also, his feet were very sensitive, red and swollen after casts. He wouldn't put them down if you tried to hold him up so he'd put his feet on the ground. If you touched them he'd jerk them out of your hand. This to will pass. Now he stands on them barefoot and in the shoes. I wash and rub his feet real good when he's out for his hour. His physical therapist also said to rub underneath the toes as there are alot of nerve endings there and he can get used to the touch again. Hang in there. jgoodin10 jgoodin10@...> wrote: I haven't received any messages for awhile, and it has been several months since I posted anything; however, my son finished casting last week and is in the DBB and AFO braces. He hates the bar, and I know this is not uncommon at first, yet he kicks his legs so much he loosens the shoes. The leather is new, so I can't keep the strap tight enough. His foot is at the very end of the shoes, so could this cause a problem if the shoes were to small. One last question- When your kids got their casts removed did they hate having their feet touched. He was just over 2 weeks old when we started casting, and now he hates it if we or anything touches his feet. Thanks for the help! - bilateral clubfeet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 - Thank you! Hopefully things will get better. He does sleep ok, but when he is awake he is not happy. Re: DBB question , we've been exactly where you are. Aidan also hated the shoes and his toes where at the very end of the shoes, almost hanging over. After about 3 days he got used to them and we haven't had any problems. We've been 23/7 for about a month and half and his toes are way over the ends. We haven't had problems with loose shoes but I always had my husband pull the strap as tight as possible, I just didn't have the hand strenght to get them where the orthotist put them. Also, his feet were very sensitive, red and swollen after casts. He wouldn't put them down if you tried to hold him up so he'd put his feet on the ground. If you touched them he'd jerk them out of your hand. This to will pass. Now he stands on them barefoot and in the shoes. I wash and rub his feet real good when he's out for his hour. His physical therapist also said to rub underneath the toes as there are alot of nerve endings there and he can get used to the touch again. Hang in there. jgoodin10 jgoodin10@...jgoodin10@...>> wrote: I haven't received any messages for awhile, and it has been several months since I posted anything; however, my son finished casting last week and is in the DBB and AFO braces. He hates the bar, and I know this is not uncommon at first, yet he kicks his legs so much he loosens the shoes. The leather is new, so I can't keep the strap tight enough. His foot is at the very end of the shoes, so could this cause a problem if the shoes were to small. One last question- When your kids got their casts removed did they hate having their feet touched. He was just over 2 weeks old when we started casting, and now he hates it if we or anything touches his feet. Thanks for the help! - bilateral clubfeet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 This a good question to ask Kori. You can also look in the archives and find the DBB tips for parents. It was just posted last week I think. Also, I am concerned your doctor only percribed them for bedtime. The chance of relapse is very high in the beginning, hence the 23/7 wear. May I ask who your doctor is? Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 I would have to say that if he hates the bar for more than a few days, something is wrong. Those babies who just *hate* the bar get over it in a few days. The others, end up with some kind of issue it seems. Additionally, if I were you I'd throw those AFO's out in the garbage (ok, keep them around but they're of absolutely no use so there's no reason to wear them) and put your child into the DBB 23/7 for 3 months. Not only are AFO's not part of the Ponseti Method, they're absolutely NOT part of the first 3 months post casting. Your child should be wearing the DBB all day long for 3 months with an hour off for bathing. No more than an hour (give or take a few minutes of course as life allows). If your doc is not following this protocol there's a chance his feet aren't corrected. And if his feet aren't corrected he absolutely IS going to hate the bar. No doubt about that. This 23/7 wear is essential to this treatment and should never be compromised or modified at all. In fact, even after the 23/7 you need to maintain the longer hours till he's walking (18, 16, 14, and finally 12 hours/day) to be sure the treatment works. And I can tell you, as can many other parents here that doing long hours now when he's little is loads easier than doing them after a relapse when he's older. It may seem like a lot right now, but a 3 year old in the DBB 16 hours a day actually is a lot to deal with so get it over with now and be more assured that he has the best treatment and smaller chance of relapse. I have a couple of questions... what angle are the shoes set at? And are the heels of the boots equal to the width of his shoulders? AND... what Doc are you seeing? Would you be willing to take him to a Ponseti Doc for a second opinion? There's only so much we as parents can do if our doc isn't following the protocols and if the feet aren't corrected you're only looking forward to a lot of misery and pain... on both your parts as you try to use the DBB. Additionally, the DBB does not correct the feet. It only maintains the correction so it's imperative that the feet be fully corrected to begin with. Have you read any of the tips posts that have been sent? If he's coming out of the shoes there's something wrong. It could be that his feet aren't corrected, or maybe you're not getting them on properly. Either way, you need to find out what's wrong and fix the problem. I will send you a copy of the tips privately, there should be something there that can help you. Good luck and please let us know what you find out. We're here for you, don't hesitate to come and ask questions. :~} Kori At 06:50 AM 1/26/2005, you wrote: >I haven't received any messages for awhile, and it has been several >months since I posted anything; however, my son finished casting last >week and is in the DBB and AFO braces. He hates the bar, and I know >this is not uncommon at first, yet he kicks his legs so much he >loosens the shoes. The leather is new, so I can't keep the strap >tight enough. His foot is at the very end of the shoes, so could >this cause a problem if the shoes were to small. One last question- >When your kids got their casts removed did they hate having their >feet touched. He was just over 2 weeks old when we started casting, >and now he hates it if we or anything touches his feet. Thanks for >the help! > > >- bilateral clubfeet > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Where are you in Indiana? Our Ponseti Doctor is Dr. Von Stein in Cincinnati which depending on where you are in the state might be a possibility for you. Just thought I would let you know. Jenni Goodin wrote: >My doctor is not on the list from Ponseti as no dr. in Indiana is unfortunately. He is Dr. Berrios, and we are unable to go out of state to another dr. because of other dr. he has to see. Thanks again! > > > Re: Re: DBB question > > > > This a good question to ask Kori. You can also look in the archives and > find the DBB tips for parents. It was just posted last week I think. > Also, I am concerned your doctor only percribed them for bedtime. The > chance of relapse is very high in the beginning, hence the 23/7 wear. May > I ask who your doctor is? > > > > > > > > Shook > Retail Operations Manager/Baking Instructor > Vie de France Yamazaki, Inc. > 2070 Chain Bridge Rd. Suite 500 > Vienna, VA 22182 > x374 > x374 > fax > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Well consider going out of state if at all possible. I'm not sure what other medical needs your child has, but if he can travel at all, go to a Ponseti doctor. The option is to stay where you are and deal with club feet the the rest of your child's life, i.e. pain, stiffness, multiple operations and $$$ lost. Any so-called correction he gets there will likely be very short lived, the results less than good and continued worsening of the condition as years pass. Not to sound harsh, but those are your options, literally. If you son cannot travel now but perhaps he can in a few months from now - you might consider waiting (depending on his age). Don't let the other doctors continue to mess him up - just wait if it's only going to be a short wait. But if there is any way at all to take him to a Ponseti Method qualified, tried, true, tested doctor, then do it. s. Re: Re: DBB question This a good question to ask Kori. You can also look in the archives and find the DBB tips for parents. It was just posted last week I think. Also, I am concerned your doctor only percribed them for bedtime. The chance of relapse is very high in the beginning, hence the 23/7 wear. May I ask who your doctor is? Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Thank you for your help. Because my son is seeing many other specialists for follow-up visits (sometimes 5 appt. a week) we are stuck in Indiana. Hopefully this will die off soon. The shoe strap was not put into the bottom hole on each shoe, so hopefully this will help. His feet appear corrected visually, so I am hoping they will stay that way. Thank you for your long post, and I appreciate your help very much. Re: DBB question I would have to say that if he hates the bar for more than a few days, something is wrong. Those babies who just *hate* the bar get over it in a few days. The others, end up with some kind of issue it seems. Additionally, if I were you I'd throw those AFO's out in the garbage (ok, keep them around but they're of absolutely no use so there's no reason to wear them) and put your child into the DBB 23/7 for 3 months. Not only are AFO's not part of the Ponseti Method, they're absolutely NOT part of the first 3 months post casting. Your child should be wearing the DBB all day long for 3 months with an hour off for bathing. No more than an hour (give or take a few minutes of course as life allows). If your doc is not following this protocol there's a chance his feet aren't corrected. And if his feet aren't corrected he absolutely IS going to hate the bar. No doubt about that. This 23/7 wear is essential to this treatment and should never be compromised or modified at all. In fact, even after the 23/7 you need to maintain the longer hours till he's walking (18, 16, 14, and finally 12 hours/day) to be sure the treatment works. And I can tell you, as can many other parents here that doing long hours now when he's little is loads easier than doing them after a relapse when he's older. It may seem like a lot right now, but a 3 year old in the DBB 16 hours a day actually is a lot to deal with so get it over with now and be more assured that he has the best treatment and smaller chance of relapse. I have a couple of questions... what angle are the shoes set at? And are the heels of the boots equal to the width of his shoulders? AND... what Doc are you seeing? Would you be willing to take him to a Ponseti Doc for a second opinion? There's only so much we as parents can do if our doc isn't following the protocols and if the feet aren't corrected you're only looking forward to a lot of misery and pain... on both your parts as you try to use the DBB. Additionally, the DBB does not correct the feet. It only maintains the correction so it's imperative that the feet be fully corrected to begin with. Have you read any of the tips posts that have been sent? If he's coming out of the shoes there's something wrong. It could be that his feet aren't corrected, or maybe you're not getting them on properly. Either way, you need to find out what's wrong and fix the problem. I will send you a copy of the tips privately, there should be something there that can help you. Good luck and please let us know what you find out. We're here for you, don't hesitate to come and ask questions. :~} Kori At 06:50 AM 1/26/2005, you wrote: >I haven't received any messages for awhile, and it has been several >months since I posted anything; however, my son finished casting last >week and is in the DBB and AFO braces. He hates the bar, and I know >this is not uncommon at first, yet he kicks his legs so much he >loosens the shoes. The leather is new, so I can't keep the strap >tight enough. His foot is at the very end of the shoes, so could >this cause a problem if the shoes were to small. One last question- >When your kids got their casts removed did they hate having their >feet touched. He was just over 2 weeks old when we started casting, >and now he hates it if we or anything touches his feet. Thanks for >the help! > > >- bilateral clubfeet > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 My doctor is not on the list from Ponseti as no dr. in Indiana is unfortunately. He is Dr. Berrios, and we are unable to go out of state to another dr. because of other dr. he has to see. Thanks again! Re: Re: DBB question This a good question to ask Kori. You can also look in the archives and find the DBB tips for parents. It was just posted last week I think. Also, I am concerned your doctor only percribed them for bedtime. The chance of relapse is very high in the beginning, hence the 23/7 wear. May I ask who your doctor is? Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Jenni, I will keep that name in mind, so we can consult Dr. Von Stein if we need to when his appt. begin to die down. We are in Indianapolis, so it is a little bit of a drive, but closer than most other doctors. Thanks for the name! Everyone has been very helpful. Re: Re: DBB question > > > > This a good question to ask Kori. You can also look in the archives and > find the DBB tips for parents. It was just posted last week I think. > Also, I am concerned your doctor only percribed them for bedtime. The > chance of relapse is very high in the beginning, hence the 23/7 wear. May > I ask who your doctor is? > > > > > > > > Shook > Retail Operations Manager/Baking Instructor > Vie de France Yamazaki, Inc. > 2070 Chain Bridge Rd. Suite 500 > Vienna, VA 22182 > x374 > x374 > fax > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 , I agree with the others. If you can drive to a Ponseti trained doctor, it is well worth it. Please think about your sons feet and his future. The last thing you want to happen is surgery. Also, if your doctor is not properly trained in Ponseti Method, he can do more harm than good. It is something to think about. Good luck and let us know what you decide. Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 , I too am concerned with the wear of the shoes only being prescribed in the evenings. I would be very cautious with this non ponseti doctor as so many things can go wrong when they dont follow the method to the " T " . We live in Michigan and would drive to see Dr. Ponseti, 8 hours on sunday, for a monday morning appt then an 8 hour drive monday to get home, and do the same thing next week. If a drive to see a good doctor who is following the ponseti method is what's needed I strongly urge you to take the leap of faith and do it. Your childs feet are worth it. We are still paying for mistakes made from non ponseti doctor and we are now being treated by Dr. Ponseti himself. And yet, because of the damage already done, there is only so much he can do now. Please don't let a bit of a drive stop you from getting in to see a good doctor. It is so important to get these feet done correctly. jason atypical bl cf 10-09-03 > > >My doctor is not on the list from Ponseti as no dr. in Indiana is unfortunately. He is Dr. Berrios, and we are unable to go out of state to another dr. because of other dr. he has to see. Thanks again! > > > > > > Re: Re: DBB question > > > > > > > > This a good question to ask Kori. You can also look in the archives and > > find the DBB tips for parents. It was just posted last week I think. > > Also, I am concerned your doctor only percribed them for bedtime. The > > chance of relapse is very high in the beginning, hence the 23/7 wear. May > > I ask who your doctor is? > > > > > > > > > > > > > > > > Shook > > Retail Operations Manager/Baking Instructor > > Vie de France Yamazaki, Inc. > > 2070 Chain Bridge Rd. Suite 500 > > Vienna, VA 22182 > > x374 > > x374 > > fax > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 good! Sorry, I was responding to posts as I caught up to them rather than reading them all through and then going back and responding. I am so glad you are going to a ponseti doctor. Good for you!!!! atypical bl cf 10-09-03 > > > > >My doctor is not on the list from Ponseti as no dr. in Indiana is > unfortunately. He is Dr. Berrios, and we are unable to go out of > state to another dr. because of other dr. he has to see. Thanks again! > > > > > > > > > Re: Re: DBB question > > > > > > > > > > > > This a good question to ask Kori. You can also look in the > archives and > > > find the DBB tips for parents. It was just posted last week I > think. > > > Also, I am concerned your doctor only percribed them for > bedtime. The > > > chance of relapse is very high in the beginning, hence the 23/7 > wear. May > > > I ask who your doctor is? > > > > > > > > > > > > > > > > > > > > > > > > Shook > > > Retail Operations Manager/Baking Instructor > > > Vie de France Yamazaki, Inc. > > > 2070 Chain Bridge Rd. Suite 500 > > > Vienna, VA 22182 > > > x374 > > > x374 > > > fax > > > > > > Quote Link to comment Share on other sites More sharing options...
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