Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Sorry to bud in on your conversation here, but My name is Louise and my 2 year old daughter Mikailah is going through the same thing. I found she would not keep the shoes on during her teething time and persistence is a virtue. The doctor who takes care of her feet says us parents have the hardest job, not his castings or even a tenotomy, the hardest part is for us parents to keep the shoes on. I truly laughed at my doctor thinking how could we have the hardest part? But now I know, the crying, the pleading and even good manners " please and thankyou " to take them off just kills me to hear her cry and tell me to take them off. I know for her she just doesn't like them, they don't hurt her in any way as she has never had blisters or red patches. She just finds them uncomfortable. on the website here gave me a good idea of taking a favorite toy and making or putting on old shoes and bar to let them know that their best friend or favourite toy is right there beside them wearing special shoes! I will try this on my daughter tonight. I hope you can stick to it, it is really hard I know. If there is anything I can do to help you in anyway, let me know cause I am struggling with her but keeping to my guns. Louise jziesemann jziesemann@...> wrote: 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 Does he have the regular Markell shoes on the Dobbs Brace (lack of official name, guess this works!) or the AFO style shoes? Perhaps if it is the AFO style you can try using the Markell, or the reverse. Have you brought up the problem to Dr Dobbs and what did he say? Now, I know that just adresses keeping them on him ... For helping him to not fight ... I dont know. Have you tried putting them on at a different time of day to see how he does (not bedtime)? Sorry, I cant think of anything else right now, but if I do, will write! Angel Re: Troubles with DDB - HELP! 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 I find it interesting that two parents, at least one a parent of a Dobbs patient have had this kind of problem that was resolved by putting the child back into the brace full time or at least 18hr/d instead of dropping to 12-14. This is recent, you can find the parent's posts on the website within the past 3-4w actually. I have said it before, and will say it again. Dr. Ponseti does not recommend dropping hours so soon, or suddenly. 12-14 is for walking children, over the age of 1 usually. The bracing time should be reduced gradually over the first year in the shoes, and dropping so suddenly seems to cause significant tolerance problems. I am positive that by keeping my daughter in the brace long hours before she was walking has helped her to understand that she MUST wear her shoes and to accept that she WILL wear her shoes every night. She does not complain and she does not ask for them off in the am when she's finishing up her hours (I try to get her to 14, but usually get 13... sometimes 12). All the old timers here with older children wearing the brace at age 3-4 and over seem to be the parents who haven't missed any nights, and who have done the long hours as per Dr. P's recommendations. They don't have children who won't tolerate the brace. Now, I can't say we haven't missed any nights, but she's done the 16-18 till she was nearly 1 and it seems to have helped. I know of a few parents here who have said their child asks for the brace off, or wakes up at night wanting it off and I seem to recall putting together in my mind that those children also were reduced to 12hr/d after the first 3mo. That Dr. Dobbs is reducing hours like this I find disheartening. I know he's a great doc, very dedicated and wonderful. But like the rest of the docs that do this... what EXACTLY does he think he's saving us parents from by doing this? This tactic seems only to cause problems, and promote difficulties because parents stop using the brace. Having to re-cast because the brace wasn't worn, or wasn't worn properly... seems like back-pedaling big time with this method's effectiveness. Parents, do the long hours when your child is little, infant - 1st year stage. Because it's easy to do it then and the time really does fly right by. It won't fly by when your child needs further casting and when you get no sleep because they refuse to wear the brace or kick it off all the time. PLEASE... consider this when your doc says 12-14hr/d after the first 3mo. I am the least person to give in to routines... but this one is important for your child to learn and you will be grateful you did it when they're older. AND... it's what Dr. Ponseti recommends. Kori At 02:06 PM 3/16/2005, you wrote: >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 I'm sorry it came across directed at you. This is totally not the parents fault. None of us were experts before we found this list. Some find it early, some late, but all the while the child is in the care of the *physician*. The physician should IMO not be messing with the bracing hours with this. We do what they tell us right? And reduction to nights only sounds really nice after the 23/7 phase so why question it? I think they think it's better for the parents to do this but in the end it isn't. And this is frustrating me because it's come up again and again. So it was a comment about the trend, and not meant to say you or any parent had any other information to go on. We have nearly all of us been told something by a physician or orthotist that contradicted what should happen. The problem is, the children are suffering, and the adults too. Not being able to sleep because of this is enough to make any parent look for other solutions. I couldn't do it myself... I don't do well with little sleep. What I wanted to say was, try going back to full time for a week or so and see how he reacts. The two parents who went back to long hours had amazingly different babies. Then gradually reduce the time. Go to 20 hours and see how that works if he's been out for a long time. Give it a little time though. If that doesn't work, then look into the /Ponseti brace. It doesn't articulate, but it is tolerated by every child who otherwise couldn't wear the FAB. Have you seen it? I know Dr. Dobbs is thinking about using these shoes on his brace, so perhaps your situation could move that along a little bit? I really think this combination will be a big improvement. He's not atypical is he? You'll figure it out, it might be something you totally didn't see but eventually he'll wear his shoes. Have you considered taking him to bed with you? Maybe he just needs some mama to get past being annoyed he's in the brace. Also, he did fine in the straight bar? Wonder what he'd do if you put that back on? Worth a try just to see maybe. I'm curious why Dr. Dobbs hasn't put him in the AFO's he's using right now. The last few babies have been given AFO's with a softer liner that is on the new bar. He didn't mention that? Kori At 07:58 PM 3/16/2005, you wrote: >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 I thought this brace would give baby more mobility, do you think if you left it on full time for a few days that he'd figure out how to use it better? I mean, be more comfortable getting about with it on. Most babies get about rather well in the straight bars and this one looks so much more free. It's gotta be hard at this age to even think about going back to long hours but perhaps he's just ticked about the brace and nothing is wrong with it or his feet... and how long should it take for him to get used to it over being ticked? I dunno... You know your little guy best. I would ask him about the AFO's then. But he's not going to be able to get around any easier, they don't allow the ankles much if any mobility from what other parents have said. Ahhh... just make him get you the sandals:~} I think I'd want the s even with the straight bar over the AFO's if it were me, especially if he's active. Do you need the contact information for ? Kori At 08:07 PM 3/16/2005, you wrote: >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 17, 2005 Report Share Posted March 17, 2005 Just read this note and I do believe you are all right in this drastic dropping of hours from 24/7 to 12-14/7!!!! I will mention this to my Orthopedic Dr in London. That maybe we should drop the hours more slowly untill there are in the walking stages. Mikailah crawled perfectly fine in the DBB shoes when she was 6 months. I found after that she was really good keeping them on until teething time. But if she new at an older age that this was a more regular routine for her shoes to be on all night, then maybe I wouldn't have had such a hard time later on!! It is true for me I was estatic about her being dropped from 23/7 to 12-14/7 after 3 months. I was very emotional about finding out about CF and castings and minor tenotomy that cutting down her time in her shoes sounded like winning the lottery. I believe that she was still to young to understand that this was going to be on a regular basis to keep her feet corrected until it was time for her to no longer need her shoes. I feel that I should tell my doctor to help future parents who will endure the shoes and the hard times to become more easier by reducing hours slowly. I wish I would have found you all earlier! I felt I could do this on my own. Stubborn I guess. I found and spoke (through emails) with Dr. Ponseti about his procedure and how to make sure she was able to get a Doctor who followed his procedures. I should have found support to talk to others. I will post your website at my doctors office for others to see. You are all so smart and extremely helpful in all areas. You are a great support team and Mikailah and I truly thankyou all for being here! I will try putting her back in her shoes for longer than her usual 3 hours. Do you think putting her in them at her age while she is awake would help before bedtime and asleep? I will try and hope to get her amount of hours back up. Louise and Mikailah jagrindon jagrindon@...> wrote: , 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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