Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 , I have never heard of a child who receives periodic casting to keep the foot corrected. Honestly, in 5 years of watching various clubfoot boards- this is the first that I've ever heard of that. If you are seriously considering that, I would suggest that you email Dr Ponseti directly first to ask him if this is a viable option to fight regression. I would think that the foot could relapse severely in the 6 months between castings to the point where casting could not bring the foot back around to full correction. At the age of 1, Westley is still very highly susceptible to experiencing a relapse if left unbraced. What doctor is treating Westley? Are you sure that his feet are completely corrected at this point since he's been out of the brace so much? After the 3 months of full-time wear were over, did the doctor have you gradually reduce his hours, or did you make the jump down to just 10-12 hours/day all at once? Do you have the adjustable length bar or one-piece gold bar? Is the distance between the heels of the shoes equal to the width of his shoulders? (you can hold the brace up to his back to " eyeball " this measurement) There are some parents here who have recently been in a similar situation with re-introducing the bar to a child roughly the same age- hopefully they can give you some advice. I would just encourage you to make sure that the brace is comfortable to him and that his feet *are* corrected so you can be confident that neither of those things are what's causing him to not want to wear it. HUGS to you!!!!! & (3-16-00, left clubfoot) > > > Ok...my son Westley is 1 years old. I thought this thing would get > easier! But it isn't! Every night is a constant 2-3 hour ordeal > with the DDB. He cries and cries and tries to take it off. And > most nights he is successful at getting it off by himself. He moves > and wiggles and kicks until he gets out. We put it back on...same > thing happens. Eventually, we are so sleep deprived and feel so > sorry for him because he has cried for 2 hours that we give in. > > I am up in the air about what the heck to do. I mean the kid is > refusing to wear the thing. I keep saying...he'll get used to > it....it will get better....but he has been in the thing since he > was 3 or 4 months old. It was fine the 24/7 for three months, but > once he knew what it was like to be out of it...it went down hill > and just keeps getting worse. > > We have tried everything to keep them from slipping off. Shoe laced > differently, added padding here and there, new shoes, thicker socks, > thinner socks, no tongue, you name it. I am just ready to give up. > > I saw a lady at Shriner's who's son wouldn't keep his bar on and > they were doing casting again. Every six months the feet would be > casted for one week...until he is 3 or 4 years old. Is this an > option? I think I'd rather deal with a week of hell every 6 months > than to deal with this every night. > > I know this group is VERY pro-ponsetti, so please do not get mad at > me for wanting to give up on this bar. I just need some help and > input before I go insane! Thank you all!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 To answer some of your questions... We see Dr. Dobbs at Shriner's in St. Louis. He was trained in the Ponsetti method by Dr. Ponsetti himself. Westley is actually in a different type of bar that Dr. Dobbs designed that is able to bend in two places. So it is supposed to be more comfortable than the regular kind. He was in the adjustable red bar for the entire 3 months and then a month or two after that before we switched b/c he was a good candidate for the bar. After the three months we went straight to night time wear (12-14 hours). His feet are not showing any signs of regression just yet, as of last month's appointment. Dr.Dobbs still thinks they look great, flexion is still super too. He just got new shoes and re- adjusted last month and we were hoping that would help, but the same problems are still happening. The shoes are fitting well too, I mean, no blisters or red marks. He has had probs with that in the past, but not right now. I kind of figured that the periodic casting was not something well known as I cannot find ANYTHING about it on the web. I only talked to the mom briefly so I have no clue how severe her son's feet were or anything. I guess I should talk to the dr. about it and see what the heck that was about. :-) Thank you for the tips. I just hate to have 3 more years of utter hell. I mean, I really went into this so dedicated to the Ponsetti method. I think the least amount of surgery the better and I am willing to keep up with this bar if that is what is going to be best for my son...but man....it is heartbreaking for him to cry so much. > > > > > > Ok...my son Westley is 1 years old. I thought this thing would > get > > easier! But it isn't! Every night is a constant 2-3 hour ordeal > > with the DDB. He cries and cries and tries to take it off. And > > most nights he is successful at getting it off by himself. He > moves > > and wiggles and kicks until he gets out. We put it back on...same > > thing happens. Eventually, we are so sleep deprived and feel so > > sorry for him because he has cried for 2 hours that we give in. > > > > I am up in the air about what the heck to do. I mean the kid is > > refusing to wear the thing. I keep saying...he'll get used to > > it....it will get better....but he has been in the thing since he > > was 3 or 4 months old. It was fine the 24/7 for three months, but > > once he knew what it was like to be out of it...it went down hill > > and just keeps getting worse. > > > > We have tried everything to keep them from slipping off. Shoe > laced > > differently, added padding here and there, new shoes, thicker > socks, > > thinner socks, no tongue, you name it. I am just ready to give > up. > > > > I saw a lady at Shriner's who's son wouldn't keep his bar on and > > they were doing casting again. Every six months the feet would be > > casted for one week...until he is 3 or 4 years old. Is this an > > option? I think I'd rather deal with a week of hell every 6 > months > > than to deal with this every night. > > > > I know this group is VERY pro-ponsetti, so please do not get mad > at > > me for wanting to give up on this bar. I just need some help and > > input before I go insane! Thank you all!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Well...there really isn't much I can do about that now. I wasn't a clubfoot expert when he was 3 months...and I still don't claim to be...I fully trust Dr. Dobbs and his treatment with our son. If that seems to be a trend though with the kiddos that are having less hours...then I guess it is good to get the word out. But what's done is done in our case. My question was what I am going to do about it now? > > > > > > > > > > > > Ok...my son Westley is 1 years old. I thought this thing would > > > get > > > > easier! But it isn't! Every night is a constant 2-3 hour > >ordeal > > > > with the DDB. He cries and cries and tries to take it off. And > > > > most nights he is successful at getting it off by himself. He > > > moves > > > > and wiggles and kicks until he gets out. We put it back > >on...same > > > > thing happens. Eventually, we are so sleep deprived and feel so > > > > sorry for him because he has cried for 2 hours that we give in. > > > > > > > > I am up in the air about what the heck to do. I mean the kid is > > > > refusing to wear the thing. I keep saying...he'll get used to > > > > it....it will get better....but he has been in the thing since > >he > > > > was 3 or 4 months old. It was fine the 24/7 for three months, > >but > > > > once he knew what it was like to be out of it...it went down > >hill > > > > and just keeps getting worse. > > > > > > > > We have tried everything to keep them from slipping off. Shoe > > > laced > > > > differently, added padding here and there, new shoes, thicker > > > socks, > > > > thinner socks, no tongue, you name it. I am just ready to give > > > up. > > > > > > > > I saw a lady at Shriner's who's son wouldn't keep his bar on and > > > > they were doing casting again. Every six months the feet would > >be > > > > casted for one week...until he is 3 or 4 years old. Is this an > > > > option? I think I'd rather deal with a week of hell every 6 > > > months > > > > than to deal with this every night. > > > > > > > > I know this group is VERY pro-ponsetti, so please do not get mad > > > at > > > > me for wanting to give up on this bar. I just need some help > >and > > > > input before I go insane! Thank you all!! > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 He has the Markells now. We brought this up to Dr. Dobb's and he gave us some suggestions with changing the shoes around. There is apparently a custom shoe they can make from a mold of our son's foot but it is only available at Children's hospital right now (and we are going to Shriner's). I think I may call tomorrow and see what it will cost for us to go to Children's to get those made. He said that they tend to stay on better because they are made to fit exactly. But, I wonder how often they have to change those with the rate of growth. As far as a different time....he is even more irritated if we do it during the day. He is VERY active, so when they are on during the day he feels really trapped and frustrated. But, thank you so much for the ideas. I think I am going to call and see what we can do about the shoes. I mean, at the very least, if we could find something that will stay on we won't give up so fast. I mean putting them on a screaming, kicking baby is near impossible...and that is with both my husband and I doing it. Eventually, he would give up with the crying and screaming, it just sucks because I have never been a fan of crying- it-out and never practiced that with my older daughters. Not that it cannot be done successfully...I just personally don't like doing it....but after an hour or two of screaming - not to mention getting bruises from holding him, kicking that bar into my legs...I just feel like giving up. Sorry to ramble. Thanks for the help! :-) > > > > > > > > > Ok...my son Westley is 1 years old. I thought this thing would > > get > > > easier! But it isn't! Every night is a constant 2-3 hour > ordeal > > > with the DDB. He cries and cries and tries to take it off. And > > > most nights he is successful at getting it off by himself. He > > moves > > > and wiggles and kicks until he gets out. We put it back > on...same > > > thing happens. Eventually, we are so sleep deprived and feel so > > > sorry for him because he has cried for 2 hours that we give in. > > > > > > I am up in the air about what the heck to do. I mean the kid is > > > refusing to wear the thing. I keep saying...he'll get used to > > > it....it will get better....but he has been in the thing since > he > > > was 3 or 4 months old. It was fine the 24/7 for three months, > but > > > once he knew what it was like to be out of it...it went down > hill > > > and just keeps getting worse. > > > > > > We have tried everything to keep them from slipping off. Shoe > > laced > > > differently, added padding here and there, new shoes, thicker > > socks, > > > thinner socks, no tongue, you name it. I am just ready to give > > up. > > > > > > I saw a lady at Shriner's who's son wouldn't keep his bar on and > > > they were doing casting again. Every six months the feet would > be > > > casted for one week...until he is 3 or 4 years old. Is this an > > > option? I think I'd rather deal with a week of hell every 6 > > months > > > than to deal with this every night. > > > > > > I know this group is VERY pro-ponsetti, so please do not get mad > > at > > > me for wanting to give up on this bar. I just need some help > and > > > input before I go insane! Thank you all!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 That is a pretty good idea with the toy. I am going to try that tomorrow night. I do not mind you joing the thread at all. I hope you too find some good ideas and help! I couldn't imagine him saying please and thank you to try to get them off...that would melt my heart too! :-) I swear the DDB has most certainly been the hardest part for us!! > > > > > > > > > Ok...my son Westley is 1 years old. I thought this thing would > > get > > > easier! But it isn't! Every night is a constant 2-3 hour > ordeal > > > with the DDB. He cries and cries and tries to take it off. And > > > most nights he is successful at getting it off by himself. He > > moves > > > and wiggles and kicks until he gets out. We put it back > on...same > > > thing happens. Eventually, we are so sleep deprived and feel so > > > sorry for him because he has cried for 2 hours that we give in. > > > > > > I am up in the air about what the heck to do. I mean the kid is > > > refusing to wear the thing. I keep saying...he'll get used to > > > it....it will get better....but he has been in the thing since > he > > > was 3 or 4 months old. It was fine the 24/7 for three months, > but > > > once he knew what it was like to be out of it...it went down > hill > > > and just keeps getting worse. > > > > > > We have tried everything to keep them from slipping off. Shoe > > laced > > > differently, added padding here and there, new shoes, thicker > > socks, > > > thinner socks, no tongue, you name it. I am just ready to give > > up. > > > > > > I saw a lady at Shriner's who's son wouldn't keep his bar on and > > > they were doing casting again. Every six months the feet would > be > > > casted for one week...until he is 3 or 4 years old. Is this an > > > option? I think I'd rather deal with a week of hell every 6 > > months > > > than to deal with this every night. > > > > > > I know this group is VERY pro-ponsetti, so please do not get mad > > at > > > me for wanting to give up on this bar. I just need some help > and > > > input before I go insane! Thank you all!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 You know after I posted...I thought I was being to harsh. :-) I know you were just frustrated. :-) I am going to call Dr. Dobbs tomorrow and mention the things you brought up and see if it helps. I haven't even considered the going full time for a week. I am not sure it will work...but it may be worth a try. Thanks again for all of the ideas!! > > > > > > > > > > > > > > > > > > Ok...my son Westley is 1 years old. I thought this thing > >would > > > > > get > > > > > > easier! But it isn't! Every night is a constant 2-3 hour > > > >ordeal > > > > > > with the DDB. He cries and cries and tries to take it off. > >And > > > > > > most nights he is successful at getting it off by himself. > >He > > > > > moves > > > > > > and wiggles and kicks until he gets out. We put it back > > > >on...same > > > > > > thing happens. Eventually, we are so sleep deprived and > >feel so > > > > > > sorry for him because he has cried for 2 hours that we give > >in. > > > > > > > > > > > > I am up in the air about what the heck to do. I mean the > >kid is > > > > > > refusing to wear the thing. I keep saying...he'll get used > >to > > > > > > it....it will get better....but he has been in the thing > >since > > > >he > > > > > > was 3 or 4 months old. It was fine the 24/7 for three > >months, > > > >but > > > > > > once he knew what it was like to be out of it...it went down > > > >hill > > > > > > and just keeps getting worse. > > > > > > > > > > > > We have tried everything to keep them from slipping off. > >Shoe > > > > > laced > > > > > > differently, added padding here and there, new shoes, thicker > > > > > socks, > > > > > > thinner socks, no tongue, you name it. I am just ready to > >give > > > > > up. > > > > > > > > > > > > I saw a lady at Shriner's who's son wouldn't keep his bar on > >and > > > > > > they were doing casting again. Every six months the feet > >would > > > >be > > > > > > casted for one week...until he is 3 or 4 years old. Is this > >an > > > > > > option? I think I'd rather deal with a week of hell every 6 > > > > > months > > > > > > than to deal with this every night. > > > > > > > > > > > > I know this group is VERY pro-ponsetti, so please do not get > >mad > > > > > at > > > > > > me for wanting to give up on this bar. I just need some help > > > >and > > > > > > input before I go insane! Thank you all!! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 I'm one of the parents that went thru the horror of reducing hrs from 23/7 to 12-14/7 after the 1st 3 months. After about a week and a half of nights only, he evidently found out what it was like with them off and would scream all night when I'd put them back on (2 weeks straight of no sleep, I too was at my wits end). After advice from this site, I went back to full time in the brace and after a week started slowly reducing (down to 19-20/7 right now). Now he's perfectly fine at nights, so it does work (at least it did for us - but Jake is just 7 1/2 mos - don't know if age will make a difference). I'm certainly no doctor, but it seems like doing nothing in between casting would be stressful on his bones going back and forth like that instead of consistent correction. Try to hang in there - I was exactly where you are a few weeks ago and I know how miserable it is. Good luck! > > > > > > > > > > > > Ok...my son Westley is 1 years old. I thought this thing would > > > get > > > > easier! But it isn't! Every night is a constant 2-3 hour > >ordeal > > > > with the DDB. He cries and cries and tries to take it off. And > > > > most nights he is successful at getting it off by himself. He > > > moves > > > > and wiggles and kicks until he gets out. We put it back > >on...same > > > > thing happens. Eventually, we are so sleep deprived and feel so > > > > sorry for him because he has cried for 2 hours that we give in. > > > > > > > > I am up in the air about what the heck to do. I mean the kid is > > > > refusing to wear the thing. I keep saying...he'll get used to > > > > it....it will get better....but he has been in the thing since > >he > > > > was 3 or 4 months old. It was fine the 24/7 for three months, > >but > > > > once he knew what it was like to be out of it...it went down > >hill > > > > and just keeps getting worse. > > > > > > > > We have tried everything to keep them from slipping off. Shoe > > > laced > > > > differently, added padding here and there, new shoes, thicker > > > socks, > > > > thinner socks, no tongue, you name it. I am just ready to give > > > up. > > > > > > > > I saw a lady at Shriner's who's son wouldn't keep his bar on and > > > > they were doing casting again. Every six months the feet would > >be > > > > casted for one week...until he is 3 or 4 years old. Is this an > > > > option? I think I'd rather deal with a week of hell every 6 > > > months > > > > than to deal with this every night. > > > > > > > > I know this group is VERY pro-ponsetti, so please do not get mad > > > at > > > > me for wanting to give up on this bar. I just need some help > >and > > > > input before I go insane! Thank you all!! > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 I believe that the sandals are what Dr. Dobbs is describing to you as far as the " custom molded " shoes that you can get at Children's. There are quite a few kids here that have the shoes. I don't think they need to be replaced more often than standard Markell shoes. There's a link to the website in the links section if you're interested. Regards, & (3-16-00, left clubfoot) > > > > > > > > > > > > > > > Ok...my son Westley is 1 years old. I thought this thing > >would > > > > get > > > > > easier! But it isn't! Every night is a constant 2-3 hour > > > ordeal > > > > > with the DDB. He cries and cries and tries to take it off. > >And > > > > > most nights he is successful at getting it off by himself. He > > > > moves > > > > > and wiggles and kicks until he gets out. We put it back > > > on...same > > > > > thing happens. Eventually, we are so sleep deprived and feel > >so > > > > > sorry for him because he has cried for 2 hours that we give in. > > > > > > > > > > I am up in the air about what the heck to do. I mean the kid > >is > > > > > refusing to wear the thing. I keep saying...he'll get used to > > > > > it....it will get better....but he has been in the thing since > > > he > > > > > was 3 or 4 months old. It was fine the 24/7 for three months, > > > but > > > > > once he knew what it was like to be out of it...it went down > > > hill > > > > > and just keeps getting worse. > > > > > > > > > > We have tried everything to keep them from slipping off. Shoe > > > > laced > > > > > differently, added padding here and there, new shoes, thicker > > > > socks, > > > > > thinner socks, no tongue, you name it. I am just ready to > >give > > > > up. > > > > > > > > > > I saw a lady at Shriner's who's son wouldn't keep his bar on > >and > > > > > they were doing casting again. Every six months the feet > >would > > > be > > > > > casted for one week...until he is 3 or 4 years old. Is this > >an > > > > > option? I think I'd rather deal with a week of hell every 6 > > > > months > > > > > than to deal with this every night. > > > > > > > > > > I know this group is VERY pro-ponsetti, so please do not get > >mad > > > > at > > > > > me for wanting to give up on this bar. I just need some help > > > and > > > > > input before I go insane! Thank you all!! > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 I thought he was describing the AFO style shoes he is using. He told us that we would need to replace the outer hard plastic part only once or twice during the full course of bracing and that the inner soft plastic piece would be replaced as their foot grows, about as often as shoes would. > > > > > > > > > > > > > > > > > > Ok...my son Westley is 1 years old. I thought this thing > > >would > > > > > get > > > > > > easier! But it isn't! Every night is a constant 2-3 hour > > > > ordeal > > > > > > with the DDB. He cries and cries and tries to take it off. > > >And > > > > > > most nights he is successful at getting it off by > himself. He > > > > > moves > > > > > > and wiggles and kicks until he gets out. We put it back > > > > on...same > > > > > > thing happens. Eventually, we are so sleep deprived and > feel > > >so > > > > > > sorry for him because he has cried for 2 hours that we > give in. > > > > > > > > > > > > I am up in the air about what the heck to do. I mean the > kid > > >is > > > > > > refusing to wear the thing. I keep saying...he'll get > used to > > > > > > it....it will get better....but he has been in the thing > since > > > > he > > > > > > was 3 or 4 months old. It was fine the 24/7 for three > months, > > > > but > > > > > > once he knew what it was like to be out of it...it went > down > > > > hill > > > > > > and just keeps getting worse. > > > > > > > > > > > > We have tried everything to keep them from slipping off. > Shoe > > > > > laced > > > > > > differently, added padding here and there, new shoes, > thicker > > > > > socks, > > > > > > thinner socks, no tongue, you name it. I am just ready to > > >give > > > > > up. > > > > > > > > > > > > I saw a lady at Shriner's who's son wouldn't keep his bar > on > > >and > > > > > > they were doing casting again. Every six months the feet > > >would > > > > be > > > > > > casted for one week...until he is 3 or 4 years old. Is > this > > >an > > > > > > option? I think I'd rather deal with a week of hell every > 6 > > > > > months > > > > > > than to deal with this every night. > > > > > > > > > > > > I know this group is VERY pro-ponsetti, so please do not > get > > >mad > > > > > at > > > > > > me for wanting to give up on this bar. I just need some > help > > > > and > > > > > > input before I go insane! Thank you all!! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 , I'm chiming in a little late on the conversation but I have to agree w/ Kori, seems several people lately have been able to resolve the kinds of issues you are having by upping their hours when they have been reduced too quickly, and then gradually reducing. We are going to see Dr. Dobbs next week and I plan to mention this to him. I think it would be great if everyone who sees him would let him know about these experiences. From talking to him, I have a feeling that the reason he is letting people reduce hours from 24 right to 12-14 is because he feels bad for both the parents and the babies and feels he is making it easier on us by reducing hours more significantly than 16-18. That's why he is working so hard on the alternatives to the traditional brace. But if it is having negative impact in some cases I think the parents just have to suck it up and deal with longer hours for a while. (I don't mean you personally, just in general because I think parents - especially those who are not a part of this group - are complaining to him about the brace.) I did want to ask you about that mother you spoke w/ at Shriners who was doing the periodic casting -- just out of curiosity, do you know if her child was a patient of Dr. Dobbs, or could they have been being seen by another orthopedic doctor there? I'm just wondering because I would be kind of surprised if Dr. Dobbs was doing something so far from the Ponseti protocol. thanks, > > > > > > > > > > > > Ok...my son Westley is 1 years old. I thought this thing > would > > > get > > > > easier! But it isn't! Every night is a constant 2-3 hour > > ordeal > > > > with the DDB. He cries and cries and tries to take it off. > And > > > > most nights he is successful at getting it off by himself. He > > > moves > > > > and wiggles and kicks until he gets out. We put it back > > on...same > > > > thing happens. Eventually, we are so sleep deprived and feel > so > > > > sorry for him because he has cried for 2 hours that we give in. > > > > > > > > I am up in the air about what the heck to do. I mean the kid > is > > > > refusing to wear the thing. I keep saying...he'll get used to > > > > it....it will get better....but he has been in the thing since > > he > > > > was 3 or 4 months old. It was fine the 24/7 for three months, > > but > > > > once he knew what it was like to be out of it...it went down > > hill > > > > and just keeps getting worse. > > > > > > > > We have tried everything to keep them from slipping off. Shoe > > > laced > > > > differently, added padding here and there, new shoes, thicker > > > socks, > > > > thinner socks, no tongue, you name it. I am just ready to > give > > > up. > > > > > > > > I saw a lady at Shriner's who's son wouldn't keep his bar on > and > > > > they were doing casting again. Every six months the feet > would > > be > > > > casted for one week...until he is 3 or 4 years old. Is this > an > > > > option? I think I'd rather deal with a week of hell every 6 > > > months > > > > than to deal with this every night. > > > > > > > > I know this group is VERY pro-ponsetti, so please do not get > mad > > > at > > > > me for wanting to give up on this bar. I just need some help > > and > > > > input before I go insane! Thank you all!! > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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