Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 , I'm glad to hear you are considering switching to the DBB. Most parents find it's a lot more complicated than an AFO system, but in the long run I don't think it really is, and then again, you get the results you need with it. I am concerned though that your child is out of any type of cast or brace right now. This could cause a lot of problems. If she gets the DBB and her foot has relapsed some, it won't fit and will likely cause pain and/or sores on her feet and tempt you to use the AFO thing instead because the DBB obviously doesn't work.... What are you and your dr. doing while you wait for a splint to maintain her correction? s. Ok, thanks to everyone for your responses. That " AFOs Suck " thread was interesting (and I just love the title). And I think I mostly understood Dr. P's lecture. I get a little confused by all the " equinus and vargus and meta-whatsa-who-zits " after a while. But I think I see the significance of the 70 degree rotation. It seems to me like the AFO/DAFO group of braces places more emphasis on holding or bracing the foot & ankle muscles in one position, whereas the DBB is more about the 70 degrees external rotation & dorsiflexion. It almost seems like to some extent they accomplish two completely different things. I did notice that nowhere on the DAFO site did they recommend it for use on CF patients. I am getting frustrated because the bracing company STILL has not called me to make her appt-I keep calling & it's been over a week. Her foot still looks great, better every day in fact, but that's 1 week & it will still be 4-6 weeks after her fitting until I get the brace. The good part of that is it gave me all this time to sort out whether I want the DAFO or not. So today I'm going to call my doc (assuming he's not in Iowa right now) and talk to him about...(drumroll please)...getting a DBB instead! Yes, you can all breathe sighs of relief! :-) Seriously, thanks to everyone for your help. I think my husband thinks I'm nuts because I talk about you guys like you're my best friends... " Oh, I'll just post & see what everybody thinks " or " I'll ask everybody in my group " . Oh well! Thanks! mommy of: Guinevere, on, Ava 8/4/04 right CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 yippee I feel the same way about this group! I talk to my family about everyone all the time.. LOL.. " we talked about... " " Wonder how He/she's doing. " I would definately be lost without this group -------------- Original message -------------- Ok, thanks to everyone for your responses. That " AFOs Suck " thread was interesting (and I just love the title). And I think I mostly understood Dr. P's lecture. I get a little confused by all the " equinus and vargus and meta-whatsa-who-zits " after a while. But I think I see the significance of the 70 degree rotation. It seems to me like the AFO/DAFO group of braces places more emphasis on holding or bracing the foot & ankle muscles in one position, whereas the DBB is more about the 70 degrees external rotation & dorsiflexion. It almost seems like to some extent they accomplish two completely different things. I did notice that nowhere on the DAFO site did they recommend it for use on CF patients. I am getting frustrated because the bracing company STILL has not called me to make her appt-I keep calling & it's been over a week. Her foot still looks great, better every day in fact, but that's 1 week & it will still be 4-6 weeks after her fitting until I get the brace. The good part of that is it gave me all this time to sort out whether I want the DAFO or not. So today I'm going to call my doc (assuming he's not in Iowa right now) and talk to him about...(drumroll please)...getting a DBB instead! Yes, you can all breathe sighs of relief! :-) Seriously, thanks to everyone for your help. I think my husband thinks I'm nuts because I talk about you guys like you're my best friends... " Oh, I'll just post & see what everybody thinks " or " I'll ask everybody in my group " . Oh well! Thanks! mommy of: Guinevere, on, Ava 8/4/04 right CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 I'll give you a little history about that thread... It started when (I think) Kaitlin was coming out of the DBB and miserable and was ready to burn the brace. So her doctor suggested the AFO. She posted here about it and as we always do, the whole AFO information came pouring in for her, the same info you read. But these docs are very persuasive and make us feel like we can't possibly know anything about orthotics so they went ahead and tried the AFO, couldn't hurt right? *That's* when the AFO's suck thread started of course. The problem with trying the AFO for those who pay outright or who pay a percentage with insurance is that they're really expensive as compared to the DBB, and it's just not worth it if you have to pay for them at all. Not to mention the possibility of loosing correction. One AFO can cost as much as $1,500 whereas the DBB is less than $100. I'm concerned about Ava's foot after the time off, and when you finally do get into the DBB that *any* lost correction, even the kind you can't readily see might cause them to slip or cause sores like so many of us have experienced. More than one proficient Ponseti Dr. has missed an incomplete correction and put baby into the DBB. The one who suffers most is the baby, and mama of course... Then you're into all that crap that goes along with this situation - it isn't fun and I hope that you and Ava can avoid that if at all possible. I am thinking, that perhaps you might want to call Dr. Ponseti if your doc is there, send an urgent email with pics of Ava's foot and tell him your doc is there now and is suggesting DAFO's but you want the DBB. I would hope that this doc comes away from his time in Iowa even without you pushing it knowing never to prescribe AFO's but you never know... Do you have her last cast? Can you check the rotation on that cast before you try the DBB to make sure she's been over corrected properly? (use a protractor - $.69 at the grocery store) You're right about the DBB providing dorsiflexion and the rotation (which is *over correction* - and should mimic the last cast exactly. Meaning if the last cast is at 50 degrees you're going to have a hard time putting that foot at 70 degrees and additional casting should be done) but it also provides the baby with the ability to move her legs, and exercise those muscles so they don't atrophy. They can kick their legs and once they're ready to stand they stand and get around just fine in the brace. In my opinion, if it were a good thing to have the leg bent at 90 degrees all the time we'd just keep the casts on. It is really such a better option to let those legs free and able to move and exercise even though the DBB sounds barbaric... it really isn't so bad at all. In fact, those of us who live with it really see the advantages over AFO's once baby is older and doing all those amazing things all the while wearing shoes tied together. The best part is that so few see relapses in the DBB, and so many see them in the AFO. Seeing these feet stay corrected is such a wonderful thing, they just look great as long as the bracing time protocols are followed. I have come to the conclusion that if AFO's worked... there would be a yahoo group like this one dedicated to telling other parents how great they are. hummmm... there isn't one is there? Kori At 03:26 AM 11/11/2004, you wrote: >Ok, thanks to everyone for your responses. That " AFOs Suck " thread >was interesting (and I just love the title). And I think I mostly >understood Dr. P's lecture. I get a little confused by all >the " equinus and vargus and meta-whatsa-who-zits " after a while. But >I think I see the significance of the 70 degree rotation. It seems >to me like the AFO/DAFO group of braces places more emphasis on >holding or bracing the foot & ankle muscles in one position, whereas >the DBB is more about the 70 degrees external rotation & >dorsiflexion. It almost seems like to some extent they accomplish >two completely different things. I did notice that nowhere on the >DAFO site did they recommend it for use on CF patients. I am getting >frustrated because the bracing company STILL has not called me to >make her appt-I keep calling & it's been over a week. Her foot still >looks great, better every day in fact, but that's 1 week & it will >still be 4-6 weeks after her fitting until I get the brace. The good >part of that is it gave me all this time to sort out whether I want >the DAFO or not. So today I'm going to call my doc (assuming he's >not in Iowa right now) and talk to him about...(drumroll >please)...getting a DBB instead! Yes, you can all breathe sighs of >relief! :-) Seriously, thanks to everyone for your help. I think my >husband thinks I'm nuts because I talk about you guys like you're my >best friends... " Oh, I'll just post & see what everybody thinks " >or " I'll ask everybody in my group " . Oh well! >Thanks! > >mommy of: >Guinevere, on, Ava 8/4/04 right CF > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 In a message dated 11/11/2004 9:40:47 AM Pacific Standard Time, frogabog@... writes: > I'll give you a little history about that thread... It started when (I > think) Kaitlin was coming out of the DBB and miserable and was > ready to burn the brace. So her doctor suggested the AFO. She posted here > about it and as we always do, the whole AFO information came pouring in for > her, the same info you read. But these docs are very persuasive and make > us feel like we can't possibly know anything about orthotics so they went > ahead and tried the AFO, couldn't hurt right? *That's* when the AFO's suck > thread started of course. The problem with trying the AFO for those who > pay outright or who pay a percentage with insurance is that they're really > expensive as compared to the DBB, and it's just not worth it if you have to > pay for them at all. Not to mention the possibility of loosing > correction. One AFO can cost as much as $1,500 whereas the DBB is less > than $100. > > I'm concerned about Ava's foot after the time off, and when you finally do > get into the DBB that *any* lost correction, even the kind you can't > readily see might cause them to slip or cause sores like so many of us have > experienced. More than one proficient Ponseti Dr. has missed an incomplete > correction and put baby into the DBB. The one who suffers most is the > baby, and mama of course... Then you're into all that crap that goes along > with this situation - it isn't fun and I hope that you and Ava can avoid > that if at all possible. I am thinking, that perhaps you might want to > call Dr. Ponseti if your doc is there, send an urgent email with pics of > Ava's foot and tell him your doc is there now and is suggesting DAFO's but > you want the DBB. I would hope that this doc comes away from his time in > Iowa even without you pushing it knowing never to prescribe AFO's but you > never know... Do you have her last cast? Can you check the rotation on > that cast before you try the DBB to make sure she's been over corrected > properly? (use a protractor - $.69 at the grocery store) > > You're right about the DBB providing dorsiflexion and the rotation (which > is *over correction* - and should mimic the last cast exactly. Meaning if > the last cast is at 50 degrees you're going to have a hard time putting > that foot at 70 degrees and additional casting should be done) but it also > provides the baby with the ability to move her legs, and exercise those > muscles so they don't atrophy. They can kick their legs and once they're > ready to stand they stand and get around just fine in the brace. In my > opinion, if it were a good thing to have the leg bent at 90 degrees all the > time we'd just keep the casts on. It is really such a better option to let > those legs free and able to move and exercise even though the DBB sounds > barbaric... it really isn't so bad at all. In fact, those of us who live > with it really see the advantages over AFO's once baby is older and doing > all those amazing things all the while wearing shoes tied together. The > best part is that so few see relapses in the DBB, and so many see them in > the AFO. Seeing these feet stay corrected is such a wonderful thing, they > just look great as long as the bracing time protocols are followed. > > I have come to the conclusion that if AFO's worked... there would be a > yahoo group like this one dedicated to telling other parents how great they > are. hummmm... there isn't one is there? > > Kori Very well said. freeman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 > In a message dated 11/11/2004 9:40:47 AM Pacific Standard Time, > frogabog@q... writes: > > > I'll give you a little history about that thread... It started when (I > > think) Kaitlin was coming out of the DBB and miserable and was > > ready to burn the brace. So her doctor suggested the AFO. She posted here > > about it and as we always do, the whole AFO information came pouring in for > > her, the same info you read. But these docs are very persuasive and make > > us feel like we can't possibly know anything about orthotics so they went > > ahead and tried the AFO, couldn't hurt right? *That's* when the AFO's suck > > thread started of course. The problem with trying the AFO for those who > > pay outright or who pay a percentage with insurance is that they're really > > expensive as compared to the DBB, and it's just not worth it if you have to > > pay for them at all. Not to mention the possibility of loosing > > correction. One AFO can cost as much as $1,500 whereas the DBB is less > > than $100. > > > > I'm concerned about Ava's foot after the time off, and when you finally do > > get into the DBB that *any* lost correction, even the kind you can't > > readily see might cause them to slip or cause sores like so many of us have > > experienced. More than one proficient Ponseti Dr. has missed an incomplete > > correction and put baby into the DBB. The one who suffers most is the > > baby, and mama of course... Then you're into all that crap that goes along > > with this situation - it isn't fun and I hope that you and Ava can avoid > > that if at all possible. I am thinking, that perhaps you might want to > > call Dr. Ponseti if your doc is there, send an urgent email with pics of > > Ava's foot and tell him your doc is there now and is suggesting DAFO's but > > you want the DBB. I would hope that this doc comes away from his time in > > Iowa even without you pushing it knowing never to prescribe AFO's but you > > never know... Do you have her last cast? Can you check the rotation on > > that cast before you try the DBB to make sure she's been over corrected > > properly? (use a protractor - $.69 at the grocery store) > > > > You're right about the DBB providing dorsiflexion and the rotation (which > > is *over correction* - and should mimic the last cast exactly. Meaning if > > the last cast is at 50 degrees you're going to have a hard time putting > > that foot at 70 degrees and additional casting should be done) but it also > > provides the baby with the ability to move her legs, and exercise those > > muscles so they don't atrophy. They can kick their legs and once they're > > ready to stand they stand and get around just fine in the brace. In my > > opinion, if it were a good thing to have the leg bent at 90 degrees all the > > time we'd just keep the casts on. It is really such a better option to let > > those legs free and able to move and exercise even though the DBB sounds > > barbaric... it really isn't so bad at all. In fact, those of us who live > > with it really see the advantages over AFO's once baby is older and doing > > all those amazing things all the while wearing shoes tied together. The > > best part is that so few see relapses in the DBB, and so many see them in > > the AFO. Seeing these feet stay corrected is such a wonderful thing, they > > just look great as long as the bracing time protocols are followed. > > > > I have come to the conclusion that if AFO's worked... there would be a > > yahoo group like this one dedicated to telling other parents how great they > > are. hummmm... there isn't one is there? > > > > Kori > > Very well said. > freeman > > I agree, great info Kori! - & Grace > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 I had a total freak out when I called my insurance company. They said a DAFO is considered durable medical equipment & they cover 50% of the cost. I had read everyone's messages talking about them being $1500 & thought AHHH I still have to pay $750!!! But then I called the brace company & they said they're only between $200-500, depending on what they decide to make it out of. I don't know what the diff is that makes one $200 and one $1500...probably just how greedy the company owner is!!! It's amazing..I have to admit when I would see Beef-n-beers for sick kids & stuff I always thought " Don't these people have insurance? " But now that I have a " sick " kid, I realize how much $$$ it takes, even with insurance. $30 a week for castings, plus gas & parking, $125 for tenotomy, braces, etc etc. It all adds up!!! And really, this is NOTHING compared to what some parents go through. I really feel for them. The mom on here (I think your son's name is ?) who has a multitude of issues to deal with, I really pray for you. Anyway, like I said before, Ava's foot is still VERY pretty! And very straight too, lots of flexibility. But I am concerned about the chance of slight relapse before I get her into a brace. I do the exercises my doc showed me CONSTANTLY. Every time I hold her (which is all the time) I'm stretching her foot & tickling it. I'm almost " The HUMAN BRACE " . I'll make sure with the doc she's still fully corrected before I put any brace on her. But honestly, I'm glad she had this time off. Her foot & ankle & leg were SOOO bruised & swollen when her last cast came off, I really think she needed the time to heal. I'd rather take the chance of needing another cast & allow her skin to breathe for a few days. We had some nursing isssues when she was first born, and she actually lost ALOT of weight. She didn't get back to her birth weight until she was about 7 weeks. It was very scary, especially now when I look back at pictures & see how skinny she was. But then she really took off-I swear she's fatter every morning!! So that last 3 week cast got REALLY tight because she was playing " catch-up " weight-wise. That's why I called the doc & he ended up taking it off 2 days early..her toes were looking purple-ish & swollen. Of course, I knew exactly what to look for thanks to everyone else's posts here about tight casts!!! And one last thing--poo on your bangs when you answered the door?!!?? HYSTERICAL!!! Thanks! , mommy of: Guinevere, on & Ava Ireland 8/4/04 right CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 I know how you and everyone else feels about insurance. I am still waiting to hear from the insurance company about the DBB coverage (BCBS). My son needs a new bar and shoes. If we don't hear from them soon, we will have to pay out of pocket for this. He has only been in his first set for a month and he already needs new everything, Dr.H said he was a bruiser. I guess he will need new DBB every month, this will be so expensive. My mother-in-law said what ever he needs, he will have, regardless of insurance. Thank GOD for support. Liana mom to Jaren 10/97 Jamia 4/99 Kyken 7/04 RCF, DBB 23/7 redskline redskline123@...> wrote: I had a total freak out when I called my insurance company. They said a DAFO is considered durable medical equipment & they cover 50% of the cost. I had read everyone's messages talking about them being $1500 & thought AHHH I still have to pay $750!!! But then I called the brace company & they said they're only between $200-500, depending on what they decide to make it out of. I don't know what the diff is that makes one $200 and one $1500...probably just how greedy the company owner is!!! It's amazing..I have to admit when I would see Beef-n-beers for sick kids & stuff I always thought " Don't these people have insurance? " But now that I have a " sick " kid, I realize how much $$$ it takes, even with insurance. $30 a week for castings, plus gas & parking, $125 for tenotomy, braces, etc etc. It all adds up!!! And really, this is NOTHING compared to what some parents go through. I really feel for them. The mom on here (I think your son's name is ?) who has a multitude of issues to deal with, I really pray for you. Anyway, like I said before, Ava's foot is still VERY pretty! And very straight too, lots of flexibility. But I am concerned about the chance of slight relapse before I get her into a brace. I do the exercises my doc showed me CONSTANTLY. Every time I hold her (which is all the time) I'm stretching her foot & tickling it. I'm almost " The HUMAN BRACE " . I'll make sure with the doc she's still fully corrected before I put any brace on her. But honestly, I'm glad she had this time off. Her foot & ankle & leg were SOOO bruised & swollen when her last cast came off, I really think she needed the time to heal. I'd rather take the chance of needing another cast & allow her skin to breathe for a few days. We had some nursing isssues when she was first born, and she actually lost ALOT of weight. She didn't get back to her birth weight until she was about 7 weeks. It was very scary, especially now when I look back at pictures & see how skinny she was. But then she really took off-I swear she's fatter every morning!! So that last 3 week cast got REALLY tight because she was playing " catch-up " weight-wise. That's why I called the doc & he ended up taking it off 2 days early..her toes were looking purple-ish & swollen. Of course, I knew exactly what to look for thanks to everyone else's posts here about tight casts!!! And one last thing--poo on your bangs when you answered the door?!!?? HYSTERICAL!!! Thanks! , mommy of: Guinevere, on & Ava Ireland 8/4/04 right CF Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.