Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 Hi my name is , my son Callum has clubfoot and i was introduced to the ponseti method when he was 3 months old,he is now 22 months old. It worked well for a while but then he became very agitated at night, with the boots and bar, when he could move around alot more, he just cried constantly, and so did I! Eventually my physio said I could opt out of the treatment if I wanted to....I did, his feet were doing well but of course they started to revert back and he started getting a crease in his arches. I felt really bad but I wasnt getting any sleep at all, but I asked my physio if I could try it again and its going ok sort of.... Callum drifts in and out of sleep and still cries with the boots and bar back on now, I cant put any covers on him because he gets all tangled up in the covers, I have to put thick warm pyjamas on him at the moment. But I just wanted to say, that after reading some of your messages I am determined to stick with it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi . I'm glad you've decided to give it another try. Now, in order to make his life as comfortable as possible did you have his feet fully corrected again before putting the shoes back on him? If not, the shoes will bother him. I suspect that he did start to relapse a bit and that's why the shoes bothered him in the first place. Relapses are common when they are younger even if we are doing everything we are supposed to do so don't worry about that. Just have his feet checked for full correction and although you may have to endure a few weeks of casting again, his feet will be much more comfortable in the shoes and they'll do what they were designed to do. Where are you located? Have you been seeing an Ortho that is trained in the Ponseti method? How long was he out of the shoes? This is a wonderfully supportive group. I'm glad you've joined! Chris I Gave up Hi my name is , my son Callum has clubfoot and i was introduced to the ponseti method when he was 3 months old,he is now 22 months old. It worked well for a while but then he became very agitated at night, with the boots and bar, when he could move around alot more, he just cried constantly, and so did I! Eventually my physio said I could opt out of the treatment if I wanted to....I did, his feet were doing well but of course they started to revert back and he started getting a crease in his arches. I felt really bad but I wasnt getting any sleep at all, but I asked my physio if I could try it again and its going ok sort of.... Callum drifts in and out of sleep and still cries with the boots and bar back on now, I cant put any covers on him because he gets all tangled up in the covers, I have to put thick warm pyjamas on him at the moment. But I just wanted to say, that after reading some of your messages I am determined to stick with it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 . Welcome to the board! I'm sorry things didn't work out better for your sons treatment. Don't give up!!! As hard as it is, you have to remember your son in the future and think about the impact uncorrected feet will have on him. There are several possibilties to why your son could have been crying all night long. It may be in fact that he was in pain, not that he just didn't want the shoes on. Many of us have discovered from this board that other factors could play a major part to extended crying spells. First, may I please ask who your doctor is? There are many doctors who claim to use the Ponseti Method, but may do a 'modified' version of it. A qualified Ponseti doctor makes a huge difference on the outcome of treatment. If your sons feet were not treated properly from the beginning, that could cause extreme pain when going into the DBB 23/7. If you could also describe your sons treatment from the very beginning it will help us detect any (if any) red flags. Secondly, if there was any relapse during that time of 'no DBB time', there is no way you can just put them back on and hope for the best. If there is a relapse, you must start treatment over from the beginning, get the feet recorrected with casts, then go back into the DBB again. Your son can be in extreme pain if he is in the DBB and his feet aren't corrected. Also, the DBB will not recorrect the feet. The DBB is only used after the feet are fully corrected and are used to hold the correction as the child grows. I recommend going to another qualified Ponseti doctor,assuming your current doc is not on Ponseti's list, and get a second opinion. You may have to start treatment over. I am not trying to be mean or harsh, just honest. We all hope the best for your little one. Good luck, and please 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 18, 2005 Report Share Posted January 18, 2005 Yes, please do stick with it! The problem with the crying could be the shoes are not fitting OK anymore, or that his bar is too short and needs to be lengthened. That seems to be a very common cause of crying when the baby has worn the DBB just fine but suddenly doesn't. As for sleeping with the bar on and the blankets tangle up - many of us here have found using a sleep sack instead of a blanket solves that problem. It totally helped my baby stay warm yet sleep soundly. They sell at Wal-Mart for about $8 or shop on line maybe. Will your son go back in to casts now that he has regressed? Please remember that if he's lost correction the DBB will not re-correct the feet - only cause him pain to put a un-corrected/regressed foot in the DBB. IT starts a vicious cycle of failure. Keep in touch and best of wishes! s. I Gave up Hi my name is , my son Callum has clubfoot and i was introduced to the ponseti method when he was 3 months old,he is now 22 months old. It worked well for a while but then he became very agitated at night, with the boots and bar, when he could move around alot more, he just cried constantly, and so did I! Eventually my physio said I could opt out of the treatment if I wanted to....I did, his feet were doing well but of course they started to revert back and he started getting a crease in his arches. I felt really bad but I wasnt getting any sleep at all, but I asked my physio if I could try it again and its going ok sort of.... Callum drifts in and out of sleep and still cries with the boots and bar back on now, I cant put any covers on him because he gets all tangled up in the covers, I have to put thick warm pyjamas on him at the moment. But I just wanted to say, that after reading some of your messages I am determined to stick with it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 hi thanks for your reply, Callum will have to wear casts again maybe in a couple of weeks, i had the bar lengthened and now he is sleeping fine my physio just wants to see if there is any difference in the next couple of weeks. Thanks for the advice about the blanket situation, i have found a place that sells baby sleeping bags, hes much happier now Thankyou > Yes, please do stick with it! The problem with the crying could be the shoes are not fitting OK anymore, or that his bar is too short and needs to be lengthened. That seems to be a very common cause of crying when the baby has worn the DBB just fine but suddenly doesn't. > > As for sleeping with the bar on and the blankets tangle up - many of us here have found using a sleep sack instead of a blanket solves that problem. It totally helped my baby stay warm yet sleep soundly. They sell at Wal-Mart for about $8 or shop on line maybe. > > Will your son go back in to casts now that he has regressed? Please remember that if he's lost correction the DBB will not re- correct the feet - only cause him pain to put a un- corrected/regressed foot in the DBB. IT starts a vicious cycle of failure. > > Keep in touch and best of wishes! > s. > > I Gave up > > > > > > Hi my name is , my son Callum has clubfoot and i was introduced > to the ponseti method when he was 3 months old,he is now 22 months > old. It worked well for a while but then he became very agitated at > night, with the boots and bar, when he could move around alot more, > he just cried constantly, and so did I! Eventually my physio said I > could opt out of the treatment if I wanted to....I did, his feet > were doing well but of course they started to revert back and he > started getting a crease in his arches. I felt really bad but I > wasnt getting any sleep at all, but I asked my physio if I could try > it again and its going ok sort of.... Callum drifts in and out of > sleep and still cries with the boots and bar back on now, I cant put > any covers on him because he gets all tangled up in the covers, I > have to put thick warm pyjamas on him at the moment. But I just > wanted to say, that after reading some of your messages I am > determined to stick with it! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 hi chris, thanks for your message. my physio is trained in ponseti, she says his feet are correctly positioned, but she has noticed that the crease is starting to come back again and that i may have to do casts again within the next couple of weeks. He fits into his boots easily, they are not badly turned in and i had the bar lengthened, so now he is sleeping fine getting him a little baby sleeping bag too. He was out of his boots and bar for about 3 months i feel terribly guilty because i should have stuck with it instead of thinking of my sleep, but my physio said the same thing as you, that these things happen and it is not nessarilly my fault. Me and Callum live in London England, > Hi . I'm glad you've decided to give it another try. Now, in order to make his life as comfortable as possible did you have his feet fully corrected again before putting the shoes back on him? If not, the shoes will bother him. I suspect that he did start to relapse a bit and that's why the shoes bothered him in the first place. Relapses are common when they are younger even if we are doing everything we are supposed to do so don't worry about that. Just have his feet checked for full correction and although you may have to endure a few weeks of casting again, his feet will be much more comfortable in the shoes and they'll do what they were designed to do. Where are you located? Have you been seeing an Ortho that is trained in the Ponseti method? How long was he out of the shoes? > This is a wonderfully supportive group. I'm glad you've joined! > Chris > I Gave up > > > > > Hi my name is , my son Callum has clubfoot and i was introduced > to the ponseti method when he was 3 months old,he is now 22 months > old. It worked well for a while but then he became very agitated at > night, with the boots and bar, when he could move around alot more, > he just cried constantly, and so did I! Eventually my physio said I > could opt out of the treatment if I wanted to....I did, his feet > were doing well but of course they started to revert back and he > started getting a crease in his arches. I felt really bad but I > wasnt getting any sleep at all, but I asked my physio if I could try > it again and its going ok sort of.... Callum drifts in and out of > sleep and still cries with the boots and bar back on now, I cant put > any covers on him because he gets all tangled up in the covers, I > have to put thick warm pyjamas on him at the moment. But I just > wanted to say, that after reading some of your messages I am > determined to stick with it! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 hi susan thankyou for your advice . This is just a quick message to let you know that i will go through the list of his treatment and let you know all the other details soon, I cannot do it now as im quite busy at the moment and the story is long! Will be in touch soon, thankyou susan.shook@... wrote:. Welcome to the board! I'm sorry things didn't work out better for your sons treatment. Don't give up!!! As hard as it is, you have to remember your son in the future and think about the impact uncorrected feet will have on him. There are several possibilties to why your son could have been crying all night long. It may be in fact that he was in pain, not that he just didn't want the shoes on. Many of us have discovered from this board that other factors could play a major part to extended crying spells. First, may I please ask who your doctor is? There are many doctors who claim to use the Ponseti Method, but may do a 'modified' version of it. A qualified Ponseti doctor makes a huge difference on the outcome of treatment. If your sons feet were not treated properly from the beginning, that could cause extreme pain when going into the DBB 23/7. If you could also describe your sons treatment from the very beginning it will help us detect any (if any) red flags. Secondly, if there was any relapse during that time of 'no DBB time', there is no way you can just put them back on and hope for the best. If there is a relapse, you must start treatment over from the beginning, get the feet recorrected with casts, then go back into the DBB again. Your son can be in extreme pain if he is in the DBB and his feet aren't corrected. Also, the DBB will not recorrect the feet. The DBB is only used after the feet are fully corrected and are used to hold the correction as the child grows. I recommend going to another qualified Ponseti doctor,assuming your current doc is not on Ponseti's list, and get a second opinion. You may have to start treatment over. I am not trying to be mean or harsh, just honest. We all hope the best for your little one. Good luck, and please 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 20, 2005 Report Share Posted January 20, 2005 Crease... are you talking about a lateral crease on the sole of the foot? If so, you need to email pictures of his feet to Dr. Ponseti because this is one of the symptoms of an atypical clubfoot which is more difficult to treat and needs different shoes than the Markell's. I noticed you mentioned this in your first post and now again here. There are parents of children with Atypical CF here who can help you more with this if it is indeed the diagnosis. And if your physician is trained in the method Dr. Ponseti can consult with her about how to treat this foot. The treatment is a little different than for regular CF but they have found out how to treat it non-surgically and are working on publishing their findings, hopefully soon we'll have more information to take to Dr's about this but for now, absolutely email Dr. P. with pictures. If you don't know, take pictures of Callum's feet like this. 1 each - Standing bearing weight from front and back. Then one of the soles of the feet. And another profile view while you push his toes up as far as they'll go past *L* (dorsiflexion). Send those to Dr. Ponseti and he'll get back to you in a couple of days, he works MWF so if you send them today (it's Thursday here) within the next 15 hours or so he may get a chance to look at them tomorrow morning. And don't feel bad about not using the brace for so long. Put it in the past and move forward because you're still in the time frame to treat this. No reason to worry about the past now, you're on your way now :~} And you're here which is the best place for you! Kori At 10:28 AM 1/20/2005, you wrote: >hi chris, thanks for your message. my physio is trained in ponseti, >she says his feet are correctly positioned, but she has noticed that >the crease is starting to come back again and that i may have to do >casts again within the next couple of weeks. He fits into his boots >easily, they are not badly turned in and i had the bar lengthened, >so now he is sleeping fine getting him a little baby sleeping bag >too. He was out of his boots and bar for about 3 months i feel >terribly guilty because i should have stuck with it instead of >thinking of my sleep, but my physio said the same thing as you, that >these things happen and it is not nessarilly my fault. Me and >Callum live in London England, > > > > Hi . I'm glad you've decided to give it another try. Now, >in order to make his life as comfortable as possible did you have >his feet fully corrected again before putting the shoes back on >him? If not, the shoes will bother him. I suspect that he did >start to relapse a bit and that's why the shoes bothered him in the >first place. Relapses are common when they are younger even if we >are doing everything we are supposed to do so don't worry about >that. Just have his feet checked for full correction and although >you may have to endure a few weeks of casting again, his feet will >be much more comfortable in the shoes and they'll do what they were >designed to do. Where are you located? Have you been seeing an >Ortho that is trained in the Ponseti method? How long was he out of >the shoes? > > This is a wonderfully supportive group. I'm glad you've joined! > > Chris > > I Gave up > > > > > > > > > > Hi my name is , my son Callum has clubfoot and i was >introduced > > to the ponseti method when he was 3 months old,he is now 22 >months > > old. It worked well for a while but then he became very agitated >at > > night, with the boots and bar, when he could move around alot >more, > > he just cried constantly, and so did I! Eventually my physio >said I > > could opt out of the treatment if I wanted to....I did, his feet > > were doing well but of course they started to revert back and he > > started getting a crease in his arches. I felt really bad but I > > wasnt getting any sleep at all, but I asked my physio if I could >try > > it again and its going ok sort of.... Callum drifts in and out >of > > sleep and still cries with the boots and bar back on now, I cant >put > > any covers on him because he gets all tangled up in the covers, >I > > have to put thick warm pyjamas on him at the moment. But I just > > wanted to say, that after reading some of your messages I am > > determined to stick with it! > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 Hi Which hospital do you go to in London? Thanks Stella > > Hi . I'm glad you've decided to give it another try. Now, > in order to make his life as comfortable as possible did you have > his feet fully corrected again before putting the shoes back on > him? If not, the shoes will bother him. I suspect that he did > start to relapse a bit and that's why the shoes bothered him in the > first place. Relapses are common when they are younger even if we > are doing everything we are supposed to do so don't worry about > that. Just have his feet checked for full correction and although > you may have to endure a few weeks of casting again, his feet will > be much more comfortable in the shoes and they'll do what they were > designed to do. Where are you located? Have you been seeing an > Ortho that is trained in the Ponseti method? How long was he out of > the shoes? > > This is a wonderfully supportive group. I'm glad you've joined! > > Chris > > I Gave up > > > > > > > > > > Hi my name is , my son Callum has clubfoot and i was > introduced > > to the ponseti method when he was 3 months old,he is now 22 > months > > old. It worked well for a while but then he became very agitated > at > > night, with the boots and bar, when he could move around alot > more, > > he just cried constantly, and so did I! Eventually my physio > said I > > could opt out of the treatment if I wanted to....I did, his feet > > were doing well but of course they started to revert back and he > > started getting a crease in his arches. I felt really bad but I > > wasnt getting any sleep at all, but I asked my physio if I could > try > > it again and its going ok sort of.... Callum drifts in and out > of > > sleep and still cries with the boots and bar back on now, I cant > put > > any covers on him because he gets all tangled up in the covers, > I > > have to put thick warm pyjamas on him at the moment. But I just > > wanted to say, that after reading some of your messages I am > > determined to stick with it! > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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