Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 I've noticed that since my dd got the dbb on yesterday (she's about 3 months old) her leg, the one that was in the cast and being treated for the club foot, is reddish/purple in the whole calf area, from behind her knee down to her ankle. This can't be normal, can it? If we take off the dbb her leg turns back to a normal whitish/pinkish color, matching her other leg. She also has hip issues so I'm wondering of the dbb is holding her leg at an angle that is cutting off circulation or something? I don't know. I do have a call into her dr.s nurse and into the guy who fitted the brace. Any ideas? Right now she is out of the dbb because it makes me nervous, though I obviously don't want her to lose any correction. I'm just not sure what to do! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 I've noticed that since my dd got the dbb on yesterday (she's about 3 months old) her leg, the one that was in the cast and being treated for the club foot, is reddish/purple in the whole calf area, from behind her knee down to her ankle. This can't be normal, can it? If we take off the dbb her leg turns back to a normal whitish/pinkish color, matching her other leg. She also has hip issues so I'm wondering of the dbb is holding her leg at an angle that is cutting off circulation or something? I don't know. I do have a call into her dr.s nurse and into the guy who fitted the brace. Any ideas? Right now she is out of the dbb because it makes me nervous, though I obviously don't want her to lose any correction. I'm just not sure what to do! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Welcome to the board, Marcia- I can't recall anyone else having this issue with the brace causing circulation problems in the leg. Please let us know what the nurse says when they call you. I assume that you'll want to get her into the doctor to review this asap! We're glad to have you here! I know that there are a few FL families here and at least one goes to Nemours (the Neace family). Regards, & (3-16-00, left clubfoot) > I've noticed that since my dd got the dbb on yesterday (she's about 3 months old) her leg, the one that was in the cast and being treated for the club foot, is reddish/purple in the whole calf area, from behind her knee down to her ankle. This can't be normal, can it? If we take off the dbb her leg turns back to a normal whitish/pinkish color, matching her other leg. She also has hip issues so I'm wondering of the dbb is holding her leg at an angle that is cutting off circulation or something? I don't know. I do have a call into her dr.s nurse and into the guy who fitted the brace. Any ideas? Right now she is out of the dbb because it makes me nervous, though I obviously don't want her to lose any correction. I'm just not sure what to do! > Marcia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Welcome to the board, Marcia- I can't recall anyone else having this issue with the brace causing circulation problems in the leg. Please let us know what the nurse says when they call you. I assume that you'll want to get her into the doctor to review this asap! We're glad to have you here! I know that there are a few FL families here and at least one goes to Nemours (the Neace family). Regards, & (3-16-00, left clubfoot) > I've noticed that since my dd got the dbb on yesterday (she's about 3 months old) her leg, the one that was in the cast and being treated for the club foot, is reddish/purple in the whole calf area, from behind her knee down to her ankle. This can't be normal, can it? If we take off the dbb her leg turns back to a normal whitish/pinkish color, matching her other leg. She also has hip issues so I'm wondering of the dbb is holding her leg at an angle that is cutting off circulation or something? I don't know. I do have a call into her dr.s nurse and into the guy who fitted the brace. Any ideas? Right now she is out of the dbb because it makes me nervous, though I obviously don't want her to lose any correction. I'm just not sure what to do! > Marcia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Marcia, That happened to Darbi! I was pretty freaked! Her legs were absolutely purple. Especially when I wore her in the sling. I asked the doc about it and he said it was not an issue. And it did stop happening. Probably took like 3-4w to go away IIRC. I stopped putting her in the sling unless I absolutely had to (she's my 3rd, so the sling sometimes was necessary) and tried to not carry her so I put pressure on the undersides of her thighs since that seemed to make it worse. But it did stop happening and I'm pretty sure it wasn't detrimental to her. I sent the tips info to you yesterday but there's nothing in it describing this phenomenon. When it happened to Darbi there were no parents here who'd experienced it either so I think it's fairly uncommon. It should not be a factor in her wearing her brace so go ahead and put it back on. Just make sure her feet are 150% in her shoes properly, the heel down and she's not screaming for her life when they're on. If she's *that* upset, you will need to re-examine the fit of the shoes using the tools in the tips info I sent and figure out why she's in pain. I noticed you had that plaztizode insert in her shoes. May I ask if she's got the new style Markell's or the old ones? The easiest way to tell is the new style shoes do NOT have a seam in the inside heel. The old ones do and need the plaztizode insert. The new ones have been designed so they don't need them usually but many orthotists are still putting them in. If you think the insert is causing a problem (pressure) it can be removed from the new style shoes, but not the old style. Just a few options for you to consider if you are having issues. I hope all is well and she had a good night last night. Let us know if you need further assistance, we're here for you! Kori At 08:42 AM 6/21/2005, you wrote: >Welcome to the board, Marcia- >I can't recall anyone else having this issue with the brace causing >circulation problems in the leg. Please let us know what the nurse >says when they call you. I assume that you'll want to get her into >the doctor to review this asap! >We're glad to have you here! I know that there are a few FL families >here and at least one goes to Nemours (the Neace family). >Regards, > & (3-16-00, left clubfoot) > > > > I've noticed that since my dd got the dbb on yesterday (she's about >3 months old) her leg, the one that was in the cast and being treated >for the club foot, is reddish/purple in the whole calf area, from >behind her knee down to her ankle. This can't be normal, can it? If we >take off the dbb her leg turns back to a normal whitish/pinkish color, >matching her other leg. She also has hip issues so I'm wondering of >the dbb is holding her leg at an angle that is cutting off circulation >or something? I don't know. I do have a call into her dr.s nurse and >into the guy who fitted the brace. Any ideas? Right now she is out of >the dbb because it makes me nervous, though I obviously don't want her >to lose any correction. I'm just not sure what to do! > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Marcia, That happened to Darbi! I was pretty freaked! Her legs were absolutely purple. Especially when I wore her in the sling. I asked the doc about it and he said it was not an issue. And it did stop happening. Probably took like 3-4w to go away IIRC. I stopped putting her in the sling unless I absolutely had to (she's my 3rd, so the sling sometimes was necessary) and tried to not carry her so I put pressure on the undersides of her thighs since that seemed to make it worse. But it did stop happening and I'm pretty sure it wasn't detrimental to her. I sent the tips info to you yesterday but there's nothing in it describing this phenomenon. When it happened to Darbi there were no parents here who'd experienced it either so I think it's fairly uncommon. It should not be a factor in her wearing her brace so go ahead and put it back on. Just make sure her feet are 150% in her shoes properly, the heel down and she's not screaming for her life when they're on. If she's *that* upset, you will need to re-examine the fit of the shoes using the tools in the tips info I sent and figure out why she's in pain. I noticed you had that plaztizode insert in her shoes. May I ask if she's got the new style Markell's or the old ones? The easiest way to tell is the new style shoes do NOT have a seam in the inside heel. The old ones do and need the plaztizode insert. The new ones have been designed so they don't need them usually but many orthotists are still putting them in. If you think the insert is causing a problem (pressure) it can be removed from the new style shoes, but not the old style. Just a few options for you to consider if you are having issues. I hope all is well and she had a good night last night. Let us know if you need further assistance, we're here for you! Kori At 08:42 AM 6/21/2005, you wrote: >Welcome to the board, Marcia- >I can't recall anyone else having this issue with the brace causing >circulation problems in the leg. Please let us know what the nurse >says when they call you. I assume that you'll want to get her into >the doctor to review this asap! >We're glad to have you here! I know that there are a few FL families >here and at least one goes to Nemours (the Neace family). >Regards, > & (3-16-00, left clubfoot) > > > > I've noticed that since my dd got the dbb on yesterday (she's about >3 months old) her leg, the one that was in the cast and being treated >for the club foot, is reddish/purple in the whole calf area, from >behind her knee down to her ankle. This can't be normal, can it? If we >take off the dbb her leg turns back to a normal whitish/pinkish color, >matching her other leg. She also has hip issues so I'm wondering of >the dbb is holding her leg at an angle that is cutting off circulation >or something? I don't know. I do have a call into her dr.s nurse and >into the guy who fitted the brace. Any ideas? Right now she is out of >the dbb because it makes me nervous, though I obviously don't want her >to lose any correction. I'm just not sure what to do! > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Thanks for the reply, actually Kathy Neace already contacted me The nurse suggested we make an appt. w/the company that fits the brace to get it readjusted. Then, if it's still doing this to come back in to see the dr. We have an appt. at 8:30 tomorrow am. They said to take the brace off, but if I hold her a certain way it doesn't turn her leg purple (basically if her leg is elevated), so I'm doing that for now, but keepign her in it. I am so paranoid about losing any correction, especially since her foot still tends to point down and get that wrinkle in the sole, just in front of the heel. If you push up on the sole, but towards the front of the foot the foot looks fine. I'm pretty sure that if she's kept in the shoes and it holds her foot flat it will fix itself, but it makes me nervous when she's not in the shoe....I know, I'm babbling now. We'll see if they can fix this tomorrow. I hope so! Marcia Re: DBB question Welcome to the board, Marcia- I can't recall anyone else having this issue with the brace causing circulation problems in the leg. Please let us know what the nurse says when they call you. I assume that you'll want to get her into the doctor to review this asap! We're glad to have you here! I know that there are a few FL families here and at least one goes to Nemours (the Neace family). Regards, & (3-16-00, left clubfoot) > I've noticed that since my dd got the dbb on yesterday (she's about 3 months old) her leg, the one that was in the cast and being treated for the club foot, is reddish/purple in the whole calf area, from behind her knee down to her ankle. This can't be normal, can it? If we take off the dbb her leg turns back to a normal whitish/pinkish color, matching her other leg. She also has hip issues so I'm wondering of the dbb is holding her leg at an angle that is cutting off circulation or something? I don't know. I do have a call into her dr.s nurse and into the guy who fitted the brace. Any ideas? Right now she is out of the dbb because it makes me nervous, though I obviously don't want her to lose any correction. I'm just not sure what to do! > Marcia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Thanks for the reply, actually Kathy Neace already contacted me The nurse suggested we make an appt. w/the company that fits the brace to get it readjusted. Then, if it's still doing this to come back in to see the dr. We have an appt. at 8:30 tomorrow am. They said to take the brace off, but if I hold her a certain way it doesn't turn her leg purple (basically if her leg is elevated), so I'm doing that for now, but keepign her in it. I am so paranoid about losing any correction, especially since her foot still tends to point down and get that wrinkle in the sole, just in front of the heel. If you push up on the sole, but towards the front of the foot the foot looks fine. I'm pretty sure that if she's kept in the shoes and it holds her foot flat it will fix itself, but it makes me nervous when she's not in the shoe....I know, I'm babbling now. We'll see if they can fix this tomorrow. I hope so! Marcia Re: DBB question Welcome to the board, Marcia- I can't recall anyone else having this issue with the brace causing circulation problems in the leg. Please let us know what the nurse says when they call you. I assume that you'll want to get her into the doctor to review this asap! We're glad to have you here! I know that there are a few FL families here and at least one goes to Nemours (the Neace family). Regards, & (3-16-00, left clubfoot) > I've noticed that since my dd got the dbb on yesterday (she's about 3 months old) her leg, the one that was in the cast and being treated for the club foot, is reddish/purple in the whole calf area, from behind her knee down to her ankle. This can't be normal, can it? If we take off the dbb her leg turns back to a normal whitish/pinkish color, matching her other leg. She also has hip issues so I'm wondering of the dbb is holding her leg at an angle that is cutting off circulation or something? I don't know. I do have a call into her dr.s nurse and into the guy who fitted the brace. Any ideas? Right now she is out of the dbb because it makes me nervous, though I obviously don't want her to lose any correction. I'm just not sure what to do! > Marcia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Marcia, That crease should not be there. And the foot should not point down at all. Big red flags. The foot likely isn't fully corrected. How are her heels doing? Any red/dark marks? How is she handling them being on when she's awake? Screaming still or ok? Does she kick her legs like she's trying to get them off? I'm curious what kind of readjustment they're talking about doing with the brace... unless the abduction is off (should be 70 degrees on the CF, 30-45 degrees on the non CF) or it's too short there's not a whole lot they can do to it in the first place. If you're not getting them on properly (many of us have done this) all you need to do is figure out how to get them on properly. If they're still not working after that, it's not the brace causing the problem but most likely the foot itself and that needs to be fixed ASAP. The crease is very concerning, because if it doesn't go away with a fully corrected foot it could mean she's atypical. Which requires special correction and alternative shoes with bar. If you want, you could send us some pictures of her foot (out of the brace) on the CFPics group (accepts attachments - unlike this list) and the other parents can let you know if it looks fully corrected. Take pics of her standing (hold her up) bearing weight from the front and back. Also, one profile view of you flexing her foot up as far past L as you can (this is dorsiflexion) and one of the soles of her feet. This is what Dr. Ponseti asks for if you send pics to him so you'd be all set to email him if you want his opinion. I would suggest that you call them back and make sure the doc will be able to see you tomorrow morning when you're there because if she needs further treatment, it should start now instead of making her wear her brace till they can get you in. LMK if you have the ability to send pics (and want to) and I'll get you approved for the CFPics site as soon as you subscribe. There's a survey form we have people fill out but for time sake, I can approve you and you can send your survey to us later. We know you're cool :~} here's the link to that group: * <http://groups.yahoo.com/group/CFPics/>http://groups.yahoo.com/group/CFPics/ Kori At 11:30 AM 6/21/2005, you wrote: >Thanks for the reply, actually Kathy Neace already contacted me The >nurse suggested we make an appt. w/the company that fits the brace to get >it readjusted. Then, if it's still doing this to come back in to see the >dr. We have an appt. at 8:30 tomorrow am. They said to take the brace off, >but if I hold her a certain way it doesn't turn her leg purple (basically >if her leg is elevated), so I'm doing that for now, but keepign her in it. >I am so paranoid about losing any correction, especially since her foot >still tends to point down and get that wrinkle in the sole, just in front >of the heel. If you push up on the sole, but towards the front of the foot >the foot looks fine. I'm pretty sure that if she's kept in the shoes and >it holds her foot flat it will fix itself, but it makes me nervous when >she's not in the shoe....I know, I'm babbling now. We'll see if they can >fix this tomorrow. I hope so! > >Marcia > Re: DBB question > > > Welcome to the board, Marcia- > I can't recall anyone else having this issue with the brace causing > circulation problems in the leg. Please let us know what the nurse > says when they call you. I assume that you'll want to get her into > the doctor to review this asap! > We're glad to have you here! I know that there are a few FL families > here and at least one goes to Nemours (the Neace family). > Regards, > & (3-16-00, left clubfoot) > > > > I've noticed that since my dd got the dbb on yesterday (she's about > 3 months old) her leg, the one that was in the cast and being treated > for the club foot, is reddish/purple in the whole calf area, from > behind her knee down to her ankle. This can't be normal, can it? If we > take off the dbb her leg turns back to a normal whitish/pinkish color, > matching her other leg. She also has hip issues so I'm wondering of > the dbb is holding her leg at an angle that is cutting off circulation > or something? I don't know. I do have a call into her dr.s nurse and > into the guy who fitted the brace. Any ideas? Right now she is out of > the dbb because it makes me nervous, though I obviously don't want her > to lose any correction. I'm just not sure what to do! > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Marcia, That crease should not be there. And the foot should not point down at all. Big red flags. The foot likely isn't fully corrected. How are her heels doing? Any red/dark marks? How is she handling them being on when she's awake? Screaming still or ok? Does she kick her legs like she's trying to get them off? I'm curious what kind of readjustment they're talking about doing with the brace... unless the abduction is off (should be 70 degrees on the CF, 30-45 degrees on the non CF) or it's too short there's not a whole lot they can do to it in the first place. If you're not getting them on properly (many of us have done this) all you need to do is figure out how to get them on properly. If they're still not working after that, it's not the brace causing the problem but most likely the foot itself and that needs to be fixed ASAP. The crease is very concerning, because if it doesn't go away with a fully corrected foot it could mean she's atypical. Which requires special correction and alternative shoes with bar. If you want, you could send us some pictures of her foot (out of the brace) on the CFPics group (accepts attachments - unlike this list) and the other parents can let you know if it looks fully corrected. Take pics of her standing (hold her up) bearing weight from the front and back. Also, one profile view of you flexing her foot up as far past L as you can (this is dorsiflexion) and one of the soles of her feet. This is what Dr. Ponseti asks for if you send pics to him so you'd be all set to email him if you want his opinion. I would suggest that you call them back and make sure the doc will be able to see you tomorrow morning when you're there because if she needs further treatment, it should start now instead of making her wear her brace till they can get you in. LMK if you have the ability to send pics (and want to) and I'll get you approved for the CFPics site as soon as you subscribe. There's a survey form we have people fill out but for time sake, I can approve you and you can send your survey to us later. We know you're cool :~} here's the link to that group: * <http://groups.yahoo.com/group/CFPics/>http://groups.yahoo.com/group/CFPics/ Kori At 11:30 AM 6/21/2005, you wrote: >Thanks for the reply, actually Kathy Neace already contacted me The >nurse suggested we make an appt. w/the company that fits the brace to get >it readjusted. Then, if it's still doing this to come back in to see the >dr. We have an appt. at 8:30 tomorrow am. They said to take the brace off, >but if I hold her a certain way it doesn't turn her leg purple (basically >if her leg is elevated), so I'm doing that for now, but keepign her in it. >I am so paranoid about losing any correction, especially since her foot >still tends to point down and get that wrinkle in the sole, just in front >of the heel. If you push up on the sole, but towards the front of the foot >the foot looks fine. I'm pretty sure that if she's kept in the shoes and >it holds her foot flat it will fix itself, but it makes me nervous when >she's not in the shoe....I know, I'm babbling now. We'll see if they can >fix this tomorrow. I hope so! > >Marcia > Re: DBB question > > > Welcome to the board, Marcia- > I can't recall anyone else having this issue with the brace causing > circulation problems in the leg. Please let us know what the nurse > says when they call you. I assume that you'll want to get her into > the doctor to review this asap! > We're glad to have you here! I know that there are a few FL families > here and at least one goes to Nemours (the Neace family). > Regards, > & (3-16-00, left clubfoot) > > > > I've noticed that since my dd got the dbb on yesterday (she's about > 3 months old) her leg, the one that was in the cast and being treated > for the club foot, is reddish/purple in the whole calf area, from > behind her knee down to her ankle. This can't be normal, can it? If we > take off the dbb her leg turns back to a normal whitish/pinkish color, > matching her other leg. She also has hip issues so I'm wondering of > the dbb is holding her leg at an angle that is cutting off circulation > or something? I don't know. I do have a call into her dr.s nurse and > into the guy who fitted the brace. Any ideas? Right now she is out of > the dbb because it makes me nervous, though I obviously don't want her > to lose any correction. I'm just not sure what to do! > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 I could not find the e-mail you referred to, but thanks so much for responding. I haven't found anything online about this and thought it may be from the unusual angle of her legs due to her other hip issues (her legs naturally point 70 degrees). Her shoes are the old style that does not have the hole in the back so that is why the insert is there. I think hers happens from pressure on the back of the thighs, like you said. If I hold her upright and sit her on my hip, facing out and supporting her with my hand on her chest/waist area it happens, or if she faces me and I hold her up to my chest. laying in my lap seems fine. She is getting redness on her heel and the side of her foot, but this is probably due to her foot not staying in the shoe properly. The prosthetician (is that right?) said to lift her toes and the front of her foot to see if her heel was down properly, but that is easier said than done, lol. She has always been very sensitive when her foot is moved in anyway. She also can't move her legs due to their natural angle (when she bends her legs her feet come towards each other, but this is impossible in the dbb) so its' hard to tell if she's just mad/frustrated that she can't move her legs or actually in pain. She did not sleep well last night at all until around 3 or 4am, but then this morning when I pulled the sheets back I could see that she had pulled her foot out of the shoe so I'm sure that's why, ha! The little stinker! She just woke up from a short nap so I'm going to try again with the brace and see if I can get it on properly...I never imagined when I was pg that I'd be dealing with all these challenges! I too have two other kiddos (a 4 year old very active boy and a 2 year old clingy little girl) so this is challenging with taking care of their needs too. Seems like most the time someone is upset and everyone has a hard time getting their needs met. I hope when we get this thing situated it'll help with that! Marcia Re: Re: DBB question Marcia, That happened to Darbi! I was pretty freaked! Her legs were absolutely purple. Especially when I wore her in the sling. I asked the doc about it and he said it was not an issue. And it did stop happening. Probably took like 3-4w to go away IIRC. I stopped putting her in the sling unless I absolutely had to (she's my 3rd, so the sling sometimes was necessary) and tried to not carry her so I put pressure on the undersides of her thighs since that seemed to make it worse. But it did stop happening and I'm pretty sure it wasn't detrimental to her. I sent the tips info to you yesterday but there's nothing in it describing this phenomenon. When it happened to Darbi there were no parents here who'd experienced it either so I think it's fairly uncommon. It should not be a factor in her wearing her brace so go ahead and put it back on. Just make sure her feet are 150% in her shoes properly, the heel down and she's not screaming for her life when they're on. If she's *that* upset, you will need to re-examine the fit of the shoes using the tools in the tips info I sent and figure out why she's in pain. I noticed you had that plaztizode insert in her shoes. May I ask if she's got the new style Markell's or the old ones? The easiest way to tell is the new style shoes do NOT have a seam in the inside heel. The old ones do and need the plaztizode insert. The new ones have been designed so they don't need them usually but many orthotists are still putting them in. If you think the insert is causing a problem (pressure) it can be removed from the new style shoes, but not the old style. Just a few options for you to consider if you are having issues. I hope all is well and she had a good night last night. Let us know if you need further assistance, we're here for you! Kori At 08:42 AM 6/21/2005, you wrote: >Welcome to the board, Marcia- >I can't recall anyone else having this issue with the brace causing >circulation problems in the leg. Please let us know what the nurse >says when they call you. I assume that you'll want to get her into >the doctor to review this asap! >We're glad to have you here! I know that there are a few FL families >here and at least one goes to Nemours (the Neace family). >Regards, > & (3-16-00, left clubfoot) > > > > I've noticed that since my dd got the dbb on yesterday (she's about >3 months old) her leg, the one that was in the cast and being treated >for the club foot, is reddish/purple in the whole calf area, from >behind her knee down to her ankle. This can't be normal, can it? If we >take off the dbb her leg turns back to a normal whitish/pinkish color, >matching her other leg. She also has hip issues so I'm wondering of >the dbb is holding her leg at an angle that is cutting off circulation >or something? I don't know. I do have a call into her dr.s nurse and >into the guy who fitted the brace. Any ideas? Right now she is out of >the dbb because it makes me nervous, though I obviously don't want her >to lose any correction. I'm just not sure what to do! > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 I could not find the e-mail you referred to, but thanks so much for responding. I haven't found anything online about this and thought it may be from the unusual angle of her legs due to her other hip issues (her legs naturally point 70 degrees). Her shoes are the old style that does not have the hole in the back so that is why the insert is there. I think hers happens from pressure on the back of the thighs, like you said. If I hold her upright and sit her on my hip, facing out and supporting her with my hand on her chest/waist area it happens, or if she faces me and I hold her up to my chest. laying in my lap seems fine. She is getting redness on her heel and the side of her foot, but this is probably due to her foot not staying in the shoe properly. The prosthetician (is that right?) said to lift her toes and the front of her foot to see if her heel was down properly, but that is easier said than done, lol. She has always been very sensitive when her foot is moved in anyway. She also can't move her legs due to their natural angle (when she bends her legs her feet come towards each other, but this is impossible in the dbb) so its' hard to tell if she's just mad/frustrated that she can't move her legs or actually in pain. She did not sleep well last night at all until around 3 or 4am, but then this morning when I pulled the sheets back I could see that she had pulled her foot out of the shoe so I'm sure that's why, ha! The little stinker! She just woke up from a short nap so I'm going to try again with the brace and see if I can get it on properly...I never imagined when I was pg that I'd be dealing with all these challenges! I too have two other kiddos (a 4 year old very active boy and a 2 year old clingy little girl) so this is challenging with taking care of their needs too. Seems like most the time someone is upset and everyone has a hard time getting their needs met. I hope when we get this thing situated it'll help with that! Marcia Re: Re: DBB question Marcia, That happened to Darbi! I was pretty freaked! Her legs were absolutely purple. Especially when I wore her in the sling. I asked the doc about it and he said it was not an issue. And it did stop happening. Probably took like 3-4w to go away IIRC. I stopped putting her in the sling unless I absolutely had to (she's my 3rd, so the sling sometimes was necessary) and tried to not carry her so I put pressure on the undersides of her thighs since that seemed to make it worse. But it did stop happening and I'm pretty sure it wasn't detrimental to her. I sent the tips info to you yesterday but there's nothing in it describing this phenomenon. When it happened to Darbi there were no parents here who'd experienced it either so I think it's fairly uncommon. It should not be a factor in her wearing her brace so go ahead and put it back on. Just make sure her feet are 150% in her shoes properly, the heel down and she's not screaming for her life when they're on. If she's *that* upset, you will need to re-examine the fit of the shoes using the tools in the tips info I sent and figure out why she's in pain. I noticed you had that plaztizode insert in her shoes. May I ask if she's got the new style Markell's or the old ones? The easiest way to tell is the new style shoes do NOT have a seam in the inside heel. The old ones do and need the plaztizode insert. The new ones have been designed so they don't need them usually but many orthotists are still putting them in. If you think the insert is causing a problem (pressure) it can be removed from the new style shoes, but not the old style. Just a few options for you to consider if you are having issues. I hope all is well and she had a good night last night. Let us know if you need further assistance, we're here for you! Kori At 08:42 AM 6/21/2005, you wrote: >Welcome to the board, Marcia- >I can't recall anyone else having this issue with the brace causing >circulation problems in the leg. Please let us know what the nurse >says when they call you. I assume that you'll want to get her into >the doctor to review this asap! >We're glad to have you here! I know that there are a few FL families >here and at least one goes to Nemours (the Neace family). >Regards, > & (3-16-00, left clubfoot) > > > > I've noticed that since my dd got the dbb on yesterday (she's about >3 months old) her leg, the one that was in the cast and being treated >for the club foot, is reddish/purple in the whole calf area, from >behind her knee down to her ankle. This can't be normal, can it? If we >take off the dbb her leg turns back to a normal whitish/pinkish color, >matching her other leg. She also has hip issues so I'm wondering of >the dbb is holding her leg at an angle that is cutting off circulation >or something? I don't know. I do have a call into her dr.s nurse and >into the guy who fitted the brace. Any ideas? Right now she is out of >the dbb because it makes me nervous, though I obviously don't want her >to lose any correction. I'm just not sure what to do! > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Thanks so much for the reply. The crease concerns me too. I'll try to get some pics of her asap. It's hard to do the foot on the floor thing due to the angle of her legs, but I'll see what I can do. I'll also send pics of her other foot, for comparison. She does kick her legs, as much as she can and there are red marks on her heel. The brace is set at 70 degrees for both feet, but that's because her " good " foot is naturally turned that way due to her leg position, it's so complicated, lol. I'll run and try to get those pics taken as she's woken up from her short nap anyway. Oh, and I applied to that other group already. Thanks so much! Marcia > > > I've noticed that since my dd got the dbb on yesterday (she's about > > 3 months old) her leg, the one that was in the cast and being treated > > for the club foot, is reddish/purple in the whole calf area, from > > behind her knee down to her ankle. This can't be normal, can it? If we > > take off the dbb her leg turns back to a normal whitish/pinkish color, > > matching her other leg. She also has hip issues so I'm wondering of > > the dbb is holding her leg at an angle that is cutting off circulation > > or something? I don't know. I do have a call into her dr.s nurse and > > into the guy who fitted the brace. Any ideas? Right now she is out of > > the dbb because it makes me nervous, though I obviously don't want her > > to lose any correction. I'm just not sure what to do! > > > Marcia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Thanks so much for the reply. The crease concerns me too. I'll try to get some pics of her asap. It's hard to do the foot on the floor thing due to the angle of her legs, but I'll see what I can do. I'll also send pics of her other foot, for comparison. She does kick her legs, as much as she can and there are red marks on her heel. The brace is set at 70 degrees for both feet, but that's because her " good " foot is naturally turned that way due to her leg position, it's so complicated, lol. I'll run and try to get those pics taken as she's woken up from her short nap anyway. Oh, and I applied to that other group already. Thanks so much! Marcia > > > I've noticed that since my dd got the dbb on yesterday (she's about > > 3 months old) her leg, the one that was in the cast and being treated > > for the club foot, is reddish/purple in the whole calf area, from > > behind her knee down to her ankle. This can't be normal, can it? If we > > take off the dbb her leg turns back to a normal whitish/pinkish color, > > matching her other leg. She also has hip issues so I'm wondering of > > the dbb is holding her leg at an angle that is cutting off circulation > > or something? I don't know. I do have a call into her dr.s nurse and > > into the guy who fitted the brace. Any ideas? Right now she is out of > > the dbb because it makes me nervous, though I obviously don't want her > > to lose any correction. I'm just not sure what to do! > > > Marcia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 I just re-sent you the files. Take a look at them and see if you can resolve anything with the info. I forgot, the shoes I was talking about (new style) aren't the ones with the holes in them. Those are new, new, new! Like a week new! There are even older styles but the new style shoes I'm speaking of came out Oct. 03 and those are the ones that don't need the plastizode. However, some parents are still getting old stock of these and you should absolutely have the new style ones that have an enlarged hell pocket, padding at the ankle, no seam inside the heel and a factory padded tongue. You may still have to modify them, I'm a big proponent of enlarging the tongue keeper slit so that the ankle can be tightened up enough to keep those feet in the shoes. There's info in the files how to do this and why. I would do that first if I were you, it does help a lot. Please, if you can take some pics of her red spots and send them to me. If she gets pressure sores, you and she will not be happy at all. Red spots are often fine, but there's a fine line between a red spot and the beginning of a pressure sore so I'd love to be able to see what you're talking about so that doesn't happen to you. Pure hell... pressure sores. Babies DO NOT deserve them. Kori At 11:52 AM 6/21/2005, you wrote: >I could not find the e-mail you referred to, but thanks so much for >responding. I haven't found anything online about this and thought it may >be from the unusual angle of her legs due to her other hip issues (her >legs naturally point 70 degrees). Her shoes are the old style that does >not have the hole in the back so that is why the insert is there. I think >hers happens from pressure on the back of the thighs, like you said. If I >hold her upright and sit her on my hip, facing out and supporting her with >my hand on her chest/waist area it happens, or if she faces me and I hold >her up to my chest. laying in my lap seems fine. She is getting redness on >her heel and the side of her foot, but this is probably due to her foot >not staying in the shoe properly. The prosthetician (is that right?) said >to lift her toes and the front of her foot to see if her heel was down >properly, but that is easier said than done, lol. She has always been very >sensitive when her foot is moved in anyway. She also can't move her legs >due to their natural angle (when she bends her legs her feet come towards >each other, but this is impossible in the dbb) so its' hard to tell if >she's just mad/frustrated that she can't move her legs or actually in >pain. She did not sleep well last night at all until around 3 or 4am, but >then this morning when I pulled the sheets back I could see that she had >pulled her foot out of the shoe so I'm sure that's why, ha! The little >stinker! She just woke up from a short nap so I'm going to try again with >the brace and see if I can get it on properly...I never imagined when I >was pg that I'd be dealing with all these challenges! I too have two other >kiddos (a 4 year old very active boy and a 2 year old clingy little girl) >so this is challenging with taking care of their needs too. Seems like >most the time someone is upset and everyone has a hard time getting their >needs met. I hope when we get this thing situated it'll help with that! > >Marcia > > Re: Re: DBB question > > > Marcia, > > That happened to Darbi! I was pretty freaked! Her legs were absolutely > purple. Especially when I wore her in the sling. I asked the doc > about it > and he said it was not an issue. And it did stop happening. Probably > took > like 3-4w to go away IIRC. I stopped putting her in the sling unless I > absolutely had to (she's my 3rd, so the sling sometimes was necessary) and > tried to not carry her so I put pressure on the undersides of her thighs > since that seemed to make it worse. But it did stop happening and I'm > pretty sure it wasn't detrimental to her. > > I sent the tips info to you yesterday but there's nothing in it describing > this phenomenon. When it happened to Darbi there were no parents here > who'd experienced it either so I think it's fairly uncommon. It should > not > be a factor in her wearing her brace so go ahead and put it back on. Just > make sure her feet are 150% in her shoes properly, the heel down and she's > not screaming for her life when they're on. If she's *that* upset, you > will need to re-examine the fit of the shoes using the tools in the tips > info I sent and figure out why she's in pain. > > I noticed you had that plaztizode insert in her shoes. May I ask if she's > got the new style Markell's or the old ones? The easiest way to tell is > the new style shoes do NOT have a seam in the inside heel. The old > ones do > and need the plaztizode insert. The new ones have been designed so they > don't need them usually but many orthotists are still putting them in. If > you think the insert is causing a problem (pressure) it can be removed > from > the new style shoes, but not the old style. Just a few options for you to > consider if you are having issues. > > I hope all is well and she had a good night last night. Let us know if > you > need further assistance, we're here for you! > > Kori > > > > > At 08:42 AM 6/21/2005, you wrote: > >Welcome to the board, Marcia- > >I can't recall anyone else having this issue with the brace causing > >circulation problems in the leg. Please let us know what the nurse > >says when they call you. I assume that you'll want to get her into > >the doctor to review this asap! > >We're glad to have you here! I know that there are a few FL families > >here and at least one goes to Nemours (the Neace family). > >Regards, > > & (3-16-00, left clubfoot) > > > > > > > I've noticed that since my dd got the dbb on yesterday (she's about > >3 months old) her leg, the one that was in the cast and being treated > >for the club foot, is reddish/purple in the whole calf area, from > >behind her knee down to her ankle. This can't be normal, can it? If we > >take off the dbb her leg turns back to a normal whitish/pinkish color, > >matching her other leg. She also has hip issues so I'm wondering of > >the dbb is holding her leg at an angle that is cutting off circulation > >or something? I don't know. I do have a call into her dr.s nurse and > >into the guy who fitted the brace. Any ideas? Right now she is out of > >the dbb because it makes me nervous, though I obviously don't want her > >to lose any correction. I'm just not sure what to do! > > > Marcia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 I just re-sent you the files. Take a look at them and see if you can resolve anything with the info. I forgot, the shoes I was talking about (new style) aren't the ones with the holes in them. Those are new, new, new! Like a week new! There are even older styles but the new style shoes I'm speaking of came out Oct. 03 and those are the ones that don't need the plastizode. However, some parents are still getting old stock of these and you should absolutely have the new style ones that have an enlarged hell pocket, padding at the ankle, no seam inside the heel and a factory padded tongue. You may still have to modify them, I'm a big proponent of enlarging the tongue keeper slit so that the ankle can be tightened up enough to keep those feet in the shoes. There's info in the files how to do this and why. I would do that first if I were you, it does help a lot. Please, if you can take some pics of her red spots and send them to me. If she gets pressure sores, you and she will not be happy at all. Red spots are often fine, but there's a fine line between a red spot and the beginning of a pressure sore so I'd love to be able to see what you're talking about so that doesn't happen to you. Pure hell... pressure sores. Babies DO NOT deserve them. Kori At 11:52 AM 6/21/2005, you wrote: >I could not find the e-mail you referred to, but thanks so much for >responding. I haven't found anything online about this and thought it may >be from the unusual angle of her legs due to her other hip issues (her >legs naturally point 70 degrees). Her shoes are the old style that does >not have the hole in the back so that is why the insert is there. I think >hers happens from pressure on the back of the thighs, like you said. If I >hold her upright and sit her on my hip, facing out and supporting her with >my hand on her chest/waist area it happens, or if she faces me and I hold >her up to my chest. laying in my lap seems fine. She is getting redness on >her heel and the side of her foot, but this is probably due to her foot >not staying in the shoe properly. The prosthetician (is that right?) said >to lift her toes and the front of her foot to see if her heel was down >properly, but that is easier said than done, lol. She has always been very >sensitive when her foot is moved in anyway. She also can't move her legs >due to their natural angle (when she bends her legs her feet come towards >each other, but this is impossible in the dbb) so its' hard to tell if >she's just mad/frustrated that she can't move her legs or actually in >pain. She did not sleep well last night at all until around 3 or 4am, but >then this morning when I pulled the sheets back I could see that she had >pulled her foot out of the shoe so I'm sure that's why, ha! The little >stinker! She just woke up from a short nap so I'm going to try again with >the brace and see if I can get it on properly...I never imagined when I >was pg that I'd be dealing with all these challenges! I too have two other >kiddos (a 4 year old very active boy and a 2 year old clingy little girl) >so this is challenging with taking care of their needs too. Seems like >most the time someone is upset and everyone has a hard time getting their >needs met. I hope when we get this thing situated it'll help with that! > >Marcia > > Re: Re: DBB question > > > Marcia, > > That happened to Darbi! I was pretty freaked! Her legs were absolutely > purple. Especially when I wore her in the sling. I asked the doc > about it > and he said it was not an issue. And it did stop happening. Probably > took > like 3-4w to go away IIRC. I stopped putting her in the sling unless I > absolutely had to (she's my 3rd, so the sling sometimes was necessary) and > tried to not carry her so I put pressure on the undersides of her thighs > since that seemed to make it worse. But it did stop happening and I'm > pretty sure it wasn't detrimental to her. > > I sent the tips info to you yesterday but there's nothing in it describing > this phenomenon. When it happened to Darbi there were no parents here > who'd experienced it either so I think it's fairly uncommon. It should > not > be a factor in her wearing her brace so go ahead and put it back on. Just > make sure her feet are 150% in her shoes properly, the heel down and she's > not screaming for her life when they're on. If she's *that* upset, you > will need to re-examine the fit of the shoes using the tools in the tips > info I sent and figure out why she's in pain. > > I noticed you had that plaztizode insert in her shoes. May I ask if she's > got the new style Markell's or the old ones? The easiest way to tell is > the new style shoes do NOT have a seam in the inside heel. The old > ones do > and need the plaztizode insert. The new ones have been designed so they > don't need them usually but many orthotists are still putting them in. If > you think the insert is causing a problem (pressure) it can be removed > from > the new style shoes, but not the old style. Just a few options for you to > consider if you are having issues. > > I hope all is well and she had a good night last night. Let us know if > you > need further assistance, we're here for you! > > Kori > > > > > At 08:42 AM 6/21/2005, you wrote: > >Welcome to the board, Marcia- > >I can't recall anyone else having this issue with the brace causing > >circulation problems in the leg. Please let us know what the nurse > >says when they call you. I assume that you'll want to get her into > >the doctor to review this asap! > >We're glad to have you here! I know that there are a few FL families > >here and at least one goes to Nemours (the Neace family). > >Regards, > > & (3-16-00, left clubfoot) > > > > > > > I've noticed that since my dd got the dbb on yesterday (she's about > >3 months old) her leg, the one that was in the cast and being treated > >for the club foot, is reddish/purple in the whole calf area, from > >behind her knee down to her ankle. This can't be normal, can it? If we > >take off the dbb her leg turns back to a normal whitish/pinkish color, > >matching her other leg. She also has hip issues so I'm wondering of > >the dbb is holding her leg at an angle that is cutting off circulation > >or something? I don't know. I do have a call into her dr.s nurse and > >into the guy who fitted the brace. Any ideas? Right now she is out of > >the dbb because it makes me nervous, though I obviously don't want her > >to lose any correction. I'm just not sure what to do! > > > Marcia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 At 11:57 AM 6/21/2005, you wrote: >Thanks so much for the reply. The crease concerns me too. I'll try >to get some pics of her asap. It's hard to do the foot on the floor >thing due to the angle of her legs, but I'll see what I can do. Even if you have to do them one at a time, just put as much pressure on them with the weight of her body as possible so we can see how flat they sit on the floor. > I'll >also send pics of her other foot, for comparison. She does kick her >legs, as much as she can and there are red marks on her heel. The >brace is set at 70 degrees for both feet, but that's because >her " good " foot is naturally turned that way due to her leg >position, it's so complicated, lol. I'll run and try to get those >pics taken as she's woken up from her short nap anyway. Oh, and I >applied to that other group already. Thanks so much! >Marcia > > > > > > I've noticed that since my dd got the dbb on yesterday >(she's about > > > 3 months old) her leg, the one that was in the cast and being >treated > > > for the club foot, is reddish/purple in the whole calf area, >from > > > behind her knee down to her ankle. This can't be normal, can >it? If we > > > take off the dbb her leg turns back to a normal >whitish/pinkish color, > > > matching her other leg. She also has hip issues so I'm >wondering of > > > the dbb is holding her leg at an angle that is cutting off >circulation > > > or something? I don't know. I do have a call into her dr.s >nurse and > > > into the guy who fitted the brace. Any ideas? Right now she is >out of > > > the dbb because it makes me nervous, though I obviously don't >want her > > > to lose any correction. I'm just not sure what to do! > > > > Marcia > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 At 11:57 AM 6/21/2005, you wrote: >Thanks so much for the reply. The crease concerns me too. I'll try >to get some pics of her asap. It's hard to do the foot on the floor >thing due to the angle of her legs, but I'll see what I can do. Even if you have to do them one at a time, just put as much pressure on them with the weight of her body as possible so we can see how flat they sit on the floor. > I'll >also send pics of her other foot, for comparison. She does kick her >legs, as much as she can and there are red marks on her heel. The >brace is set at 70 degrees for both feet, but that's because >her " good " foot is naturally turned that way due to her leg >position, it's so complicated, lol. I'll run and try to get those >pics taken as she's woken up from her short nap anyway. Oh, and I >applied to that other group already. Thanks so much! >Marcia > > > > > > I've noticed that since my dd got the dbb on yesterday >(she's about > > > 3 months old) her leg, the one that was in the cast and being >treated > > > for the club foot, is reddish/purple in the whole calf area, >from > > > behind her knee down to her ankle. This can't be normal, can >it? If we > > > take off the dbb her leg turns back to a normal >whitish/pinkish color, > > > matching her other leg. She also has hip issues so I'm >wondering of > > > the dbb is holding her leg at an angle that is cutting off >circulation > > > or something? I don't know. I do have a call into her dr.s >nurse and > > > into the guy who fitted the brace. Any ideas? Right now she is >out of > > > the dbb because it makes me nervous, though I obviously don't >want her > > > to lose any correction. I'm just not sure what to do! > > > > Marcia > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Geeze, another doctor not prescribing the FAB correctly! Rrrggg! The whole success of the method depends on your FAB use!!!!!!! Why do docs not listen?????????? (FRUSTRATION!) OK Stacey, this is real simple and pretty cut-n-dry. Dr. Ponseti's protocol prescribes the children wear the FAB 23 hours a day 7 days a week for 3 months. At that point it is reduced to 18 hours a day - crap I have crazy screaming kids here, hard to concentrate....um... help me out gang, is it 18 hours until they bear weight? Then down to 14 hours a day, minimum of 12 till they graduate from it at around age 4 years old. I know the exact directions are here somewhere and if someone doesn't pipe up with it you can probably locate it in the Files. The FAB does not interfer with normal development when worn according to Dr. P's prescription for use. Your baby will roll, sit up, crawl, cruise, everything normally (provided there isn't some other issue at work besides clubfoot). Some children roll and sit up earlier than normal due to it's use. Saying some kids don't tolerate it is a cop out in my opinion. Who gives them the choice? Oh sure some kids may hate the dang thing once in a while, but they hate holding hands crossing busy streets, too, but do we let them run loose in traffic?? If he hated diaper changes would you let him run around poopy? They don 't know what's good for them, that's why they have parents. What aggrivates me is what sounds like your doctor's lack of support in this area, almost giving the parents permission to not use the FAB which is going to lead to horrible results later on. I venture it is the doctor's own ignorance at work here and Cheers to you for educating yourself as a parent! The main thing to keep in mind is that the FAB becomes your child's " Normal " . We were talking about this just recently - they grow up in it, it's part of them, part of their world, their life, their everything. Before too long it will really be little moer than an extension of the child's pajamas. My little son here just turned 2 years old. Once he gets his FAB on at night he can hardly keep his eyes open, it's so normal to him that the shoes go on for bed. And in the morning soon as he eats his breakfast he knows they come back off. I'm sorry to rant and rave, I really don't mean to, and I'm so glad to have you in the group here. It's the doctors who don't support the parents in their use of the FAB that really aggrivate me because with out the brace, these corrected children revert back to being club footed. Best of luck to you! s. DBB Question Hello Everyone, I have a three month old son named with moderate left clubfoot who is currently wearing the DBB. He had 5 weeks of casts (starting on day 4 of life) and then on week 6 starting wearing the DBB. He has been wearing the DBB approxiamtely 6 1/2 weeks now for 23 hours a day. We went for his checkup today and the doctor said that his foot looks good so far and to come back in 2 1/2 months. He said that we should try to keep wearing the DBB for the 23 hours as long as possible but can start to cutdown on the hours once it beings to interfere with his development. How do I know when this is? How many hours should he wear the bar once it is not 23 hours anymore? I asked the questions but did not really get a good answer on what we should be doing. Or maybe I just did not understand. My doctor said a lot of times the babies just do not want to wear the bars anymore or have issues with them. So far is doing pretty well so I want to keep him wearing them as much as possible since I am afraid of relapse but I do not want to interfere with his normal development. Thank you, Stacey Mom to LCF 7/8/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Geeze, another doctor not prescribing the FAB correctly! Rrrggg! The whole success of the method depends on your FAB use!!!!!!! Why do docs not listen?????????? (FRUSTRATION!) OK Stacey, this is real simple and pretty cut-n-dry. Dr. Ponseti's protocol prescribes the children wear the FAB 23 hours a day 7 days a week for 3 months. At that point it is reduced to 18 hours a day - crap I have crazy screaming kids here, hard to concentrate....um... help me out gang, is it 18 hours until they bear weight? Then down to 14 hours a day, minimum of 12 till they graduate from it at around age 4 years old. I know the exact directions are here somewhere and if someone doesn't pipe up with it you can probably locate it in the Files. The FAB does not interfer with normal development when worn according to Dr. P's prescription for use. Your baby will roll, sit up, crawl, cruise, everything normally (provided there isn't some other issue at work besides clubfoot). Some children roll and sit up earlier than normal due to it's use. Saying some kids don't tolerate it is a cop out in my opinion. Who gives them the choice? Oh sure some kids may hate the dang thing once in a while, but they hate holding hands crossing busy streets, too, but do we let them run loose in traffic?? If he hated diaper changes would you let him run around poopy? They don 't know what's good for them, that's why they have parents. What aggrivates me is what sounds like your doctor's lack of support in this area, almost giving the parents permission to not use the FAB which is going to lead to horrible results later on. I venture it is the doctor's own ignorance at work here and Cheers to you for educating yourself as a parent! The main thing to keep in mind is that the FAB becomes your child's " Normal " . We were talking about this just recently - they grow up in it, it's part of them, part of their world, their life, their everything. Before too long it will really be little moer than an extension of the child's pajamas. My little son here just turned 2 years old. Once he gets his FAB on at night he can hardly keep his eyes open, it's so normal to him that the shoes go on for bed. And in the morning soon as he eats his breakfast he knows they come back off. I'm sorry to rant and rave, I really don't mean to, and I'm so glad to have you in the group here. It's the doctors who don't support the parents in their use of the FAB that really aggrivate me because with out the brace, these corrected children revert back to being club footed. Best of luck to you! s. DBB Question Hello Everyone, I have a three month old son named with moderate left clubfoot who is currently wearing the DBB. He had 5 weeks of casts (starting on day 4 of life) and then on week 6 starting wearing the DBB. He has been wearing the DBB approxiamtely 6 1/2 weeks now for 23 hours a day. We went for his checkup today and the doctor said that his foot looks good so far and to come back in 2 1/2 months. He said that we should try to keep wearing the DBB for the 23 hours as long as possible but can start to cutdown on the hours once it beings to interfere with his development. How do I know when this is? How many hours should he wear the bar once it is not 23 hours anymore? I asked the questions but did not really get a good answer on what we should be doing. Or maybe I just did not understand. My doctor said a lot of times the babies just do not want to wear the bars anymore or have issues with them. So far is doing pretty well so I want to keep him wearing them as much as possible since I am afraid of relapse but I do not want to interfere with his normal development. Thank you, Stacey Mom to LCF 7/8/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Thank you for the advice. Actually, my son started rolling over to his stomach a couple of weeks ago and he is barely three months old. (I wish he were able to roll back though). It makes me feel better to hear that many kids do things even earlier when they are in the bar. I was afraid was going to be behind developmentally but now see this does not have to be the case. We have another month and half to wear the bar 23/7. Then we will start to cutdown to the 18-20 hours. The doctor mentioned something about having the bar off for about 4 hours but was not very clear. He pretty much was leaving it up to us on how we wanted to go about it. It was not exactly what I wanted to hear. I have to say that when we take the shoes off for the hour it is not too long before bedtime. Once the shoes and bar go back on knows bedtime is coming soon. I think he likes his little routine. The shoes are definitely a part of him. How do I know when he needs a longer bar? Also, the toes on his non- clubfoot are at the end of the shoes already. On the other hand, the clubfoot is quite a bit shorter and has a way to go still. Do you find their feet grow fast now and need new shoes often? My insurance did not cover the shoes and they were expensive. But, whatever we need to do will get done for my little guy. > > Geeze, another doctor not prescribing the FAB correctly! Rrrggg! The whole success of the method depends on your FAB use!!!!!!! Why do docs not listen?????????? (FRUSTRATION!) > > OK Stacey, this is real simple and pretty cut-n-dry. Dr. Ponseti's protocol prescribes the children wear the FAB 23 hours a day 7 days a week for 3 months. At that point it is reduced to 18 hours a day - crap I have crazy screaming kids here, hard to concentrate....um... help me out gang, is it 18 hours until they bear weight? Then down to 14 hours a day, minimum of 12 till they graduate from it at around age 4 years old. I know the exact directions are here somewhere and if someone doesn't pipe up with it you can probably locate it in the Files. > > The FAB does not interfer with normal development when worn according to Dr. P's prescription for use. Your baby will roll, sit up, crawl, cruise, everything normally (provided there isn't some other issue at work besides clubfoot). Some children roll and sit up earlier than normal due to it's use. > > Saying some kids don't tolerate it is a cop out in my opinion. Who gives them the choice? Oh sure some kids may hate the dang thing once in a while, but they hate holding hands crossing busy streets, too, but do we let them run loose in traffic?? If he hated diaper changes would you let him run around poopy? They don 't know what's good for them, that's why they have parents. > > What aggrivates me is what sounds like your doctor's lack of support in this area, almost giving the parents permission to not use the FAB which is going to lead to horrible results later on. I venture it is the doctor's own ignorance at work here and Cheers to you for educating yourself as a parent! > > The main thing to keep in mind is that the FAB becomes your child's " Normal " . We were talking about this just recently - they grow up in it, it's part of them, part of their world, their life, their everything. Before too long it will really be little moer than an extension of the child's pajamas. My little son here just turned 2 years old. Once he gets his FAB on at night he can hardly keep his eyes open, it's so normal to him that the shoes go on for bed. And in the morning soon as he eats his breakfast he knows they come back off. > > I'm sorry to rant and rave, I really don't mean to, and I'm so glad to have you in the group here. It's the doctors who don't support the parents in their use of the FAB that really aggrivate me because with out the brace, these corrected children revert back to being club footed. > > Best of luck to you! > s. > DBB Question > > > Hello Everyone, > > I have a three month old son named with moderate left > clubfoot who is currently wearing the DBB. He had 5 weeks of casts > (starting on day 4 of life) and then on week 6 starting wearing the > DBB. He has been wearing the DBB approxiamtely 6 1/2 weeks now for > 23 hours a day. We went for his checkup today and the doctor said > that his foot looks good so far and to come back in 2 1/2 months. > He said that we should try to keep wearing the DBB for the 23 > hours as long as possible but can start to cutdown on the hours once > it beings to interfere with his development. How do I know when > this is? How many hours should he wear the bar once it is not 23 > hours anymore? I asked the questions but did not really get a good > answer on what we should be doing. Or maybe I just did not > understand. My doctor said a lot of times the babies just do not > want to wear the bars anymore or have issues with them. So far > is doing pretty well so I want to keep him wearing them as > much as possible since I am afraid of relapse but I do not want to > interfere with his normal development. > > Thank you, > Stacey > Mom to LCF 7/8/05 > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Thank you for the advice. Actually, my son started rolling over to his stomach a couple of weeks ago and he is barely three months old. (I wish he were able to roll back though). It makes me feel better to hear that many kids do things even earlier when they are in the bar. I was afraid was going to be behind developmentally but now see this does not have to be the case. We have another month and half to wear the bar 23/7. Then we will start to cutdown to the 18-20 hours. The doctor mentioned something about having the bar off for about 4 hours but was not very clear. He pretty much was leaving it up to us on how we wanted to go about it. It was not exactly what I wanted to hear. I have to say that when we take the shoes off for the hour it is not too long before bedtime. Once the shoes and bar go back on knows bedtime is coming soon. I think he likes his little routine. The shoes are definitely a part of him. How do I know when he needs a longer bar? Also, the toes on his non- clubfoot are at the end of the shoes already. On the other hand, the clubfoot is quite a bit shorter and has a way to go still. Do you find their feet grow fast now and need new shoes often? My insurance did not cover the shoes and they were expensive. But, whatever we need to do will get done for my little guy. > > Geeze, another doctor not prescribing the FAB correctly! Rrrggg! The whole success of the method depends on your FAB use!!!!!!! Why do docs not listen?????????? (FRUSTRATION!) > > OK Stacey, this is real simple and pretty cut-n-dry. Dr. Ponseti's protocol prescribes the children wear the FAB 23 hours a day 7 days a week for 3 months. At that point it is reduced to 18 hours a day - crap I have crazy screaming kids here, hard to concentrate....um... help me out gang, is it 18 hours until they bear weight? Then down to 14 hours a day, minimum of 12 till they graduate from it at around age 4 years old. I know the exact directions are here somewhere and if someone doesn't pipe up with it you can probably locate it in the Files. > > The FAB does not interfer with normal development when worn according to Dr. P's prescription for use. Your baby will roll, sit up, crawl, cruise, everything normally (provided there isn't some other issue at work besides clubfoot). Some children roll and sit up earlier than normal due to it's use. > > Saying some kids don't tolerate it is a cop out in my opinion. Who gives them the choice? Oh sure some kids may hate the dang thing once in a while, but they hate holding hands crossing busy streets, too, but do we let them run loose in traffic?? If he hated diaper changes would you let him run around poopy? They don 't know what's good for them, that's why they have parents. > > What aggrivates me is what sounds like your doctor's lack of support in this area, almost giving the parents permission to not use the FAB which is going to lead to horrible results later on. I venture it is the doctor's own ignorance at work here and Cheers to you for educating yourself as a parent! > > The main thing to keep in mind is that the FAB becomes your child's " Normal " . We were talking about this just recently - they grow up in it, it's part of them, part of their world, their life, their everything. Before too long it will really be little moer than an extension of the child's pajamas. My little son here just turned 2 years old. Once he gets his FAB on at night he can hardly keep his eyes open, it's so normal to him that the shoes go on for bed. And in the morning soon as he eats his breakfast he knows they come back off. > > I'm sorry to rant and rave, I really don't mean to, and I'm so glad to have you in the group here. It's the doctors who don't support the parents in their use of the FAB that really aggrivate me because with out the brace, these corrected children revert back to being club footed. > > Best of luck to you! > s. > DBB Question > > > Hello Everyone, > > I have a three month old son named with moderate left > clubfoot who is currently wearing the DBB. He had 5 weeks of casts > (starting on day 4 of life) and then on week 6 starting wearing the > DBB. He has been wearing the DBB approxiamtely 6 1/2 weeks now for > 23 hours a day. We went for his checkup today and the doctor said > that his foot looks good so far and to come back in 2 1/2 months. > He said that we should try to keep wearing the DBB for the 23 > hours as long as possible but can start to cutdown on the hours once > it beings to interfere with his development. How do I know when > this is? How many hours should he wear the bar once it is not 23 > hours anymore? I asked the questions but did not really get a good > answer on what we should be doing. Or maybe I just did not > understand. My doctor said a lot of times the babies just do not > want to wear the bars anymore or have issues with them. So far > is doing pretty well so I want to keep him wearing them as > much as possible since I am afraid of relapse but I do not want to > interfere with his normal development. > > Thank you, > Stacey > Mom to LCF 7/8/05 > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Stacey, Most babies seem to be most comfortable when the FAB is set up so that the distance between their heels is the same as the width of their shoulders. So when he's not wearing the FAB sometime, hold it up to his shoulders and he should pretty much fit between the shoes. As far as the shoes go, they can keep wearing them until their toes are sticking out just past the edge of the sole. We've never let Jonah's shoes get that small on him since they seem to be too tight before they are too short and he starts to complain about them (also, we get the shoes for free since we go to a Shriner's hospital). I'm fairly certain you can get a different sized shoe for each foot without having to buy 2 pairs of shoes. Are you getting the shoes through an orthotist or through a shoe store? The Markell site has a flyer about the straight last shoes that has all that kinds of information as well as a size chart. They are at: http://www.markellshoe.com Also, many of us here are happy to give our used shoes away. I believe there was a group set up for this a while back. Anyone want to post that information? Remind me where you you are located and who is treating your son. So many people to keep straight! I'll send you the FAB Tips 'n' Tricks document in a separate email to follow. Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, corrected bilateral clubfoot, FAB 14/7) > > Thank you for the advice. Actually, my son started rolling over to > his stomach a couple of weeks ago and he is barely three months old. > (I wish he were able to roll back though). It makes me feel better > to hear that many kids do things even earlier when they are in the > bar. I was afraid was going to be behind developmentally but > now see this does not have to be the case. > > We have another month and half to wear the bar 23/7. Then we will > start to cutdown to the 18-20 hours. The doctor mentioned something > about having the bar off for about 4 hours but was not very clear. > He pretty much was leaving it up to us on how we wanted to go about > it. It was not exactly what I wanted to hear. > > I have to say that when we take the shoes off for the hour it is not > too long before bedtime. Once the shoes and bar go back on > knows bedtime is coming soon. I think he likes his little routine. > The shoes are definitely a part of him. > > How do I know when he needs a longer bar? Also, the toes on his non- > clubfoot are at the end of the shoes already. On the other hand, > the clubfoot is quite a bit shorter and has a way to go still. Do > you find their feet grow fast now and need new shoes often? My > insurance did not cover the shoes and they were expensive. But, > whatever we need to do will get done for my little guy. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Stacey, Most babies seem to be most comfortable when the FAB is set up so that the distance between their heels is the same as the width of their shoulders. So when he's not wearing the FAB sometime, hold it up to his shoulders and he should pretty much fit between the shoes. As far as the shoes go, they can keep wearing them until their toes are sticking out just past the edge of the sole. We've never let Jonah's shoes get that small on him since they seem to be too tight before they are too short and he starts to complain about them (also, we get the shoes for free since we go to a Shriner's hospital). I'm fairly certain you can get a different sized shoe for each foot without having to buy 2 pairs of shoes. Are you getting the shoes through an orthotist or through a shoe store? The Markell site has a flyer about the straight last shoes that has all that kinds of information as well as a size chart. They are at: http://www.markellshoe.com Also, many of us here are happy to give our used shoes away. I believe there was a group set up for this a while back. Anyone want to post that information? Remind me where you you are located and who is treating your son. So many people to keep straight! I'll send you the FAB Tips 'n' Tricks document in a separate email to follow. Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, corrected bilateral clubfoot, FAB 14/7) > > Thank you for the advice. Actually, my son started rolling over to > his stomach a couple of weeks ago and he is barely three months old. > (I wish he were able to roll back though). It makes me feel better > to hear that many kids do things even earlier when they are in the > bar. I was afraid was going to be behind developmentally but > now see this does not have to be the case. > > We have another month and half to wear the bar 23/7. Then we will > start to cutdown to the 18-20 hours. The doctor mentioned something > about having the bar off for about 4 hours but was not very clear. > He pretty much was leaving it up to us on how we wanted to go about > it. It was not exactly what I wanted to hear. > > I have to say that when we take the shoes off for the hour it is not > too long before bedtime. Once the shoes and bar go back on > knows bedtime is coming soon. I think he likes his little routine. > The shoes are definitely a part of him. > > How do I know when he needs a longer bar? Also, the toes on his non- > clubfoot are at the end of the shoes already. On the other hand, > the clubfoot is quite a bit shorter and has a way to go still. Do > you find their feet grow fast now and need new shoes often? My > insurance did not cover the shoes and they were expensive. But, > whatever we need to do will get done for my little guy. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2005 Report Share Posted October 7, 2005 Hi! Please be assured that the casting and bracing doesn't cause delays for the majority of the kids! My daughter went into the brace full time at 5 months old and she learned to sit, pull to a stand,and cruise in her brace- and she was walking by her first birthday. There are some interesting polls in the polls section (like when did your cf baby start to walk) if you're interested. Here's the link to the post with the information about the bracing protocol from Dr. Ponseti: http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/30939 FYI- there is a ton of information on this group's website under the Files section (look under the bracing folder) and the Links section too. I hope this helps! & (3-16-00, left clubfoot) Quote Link to comment Share on other sites More sharing options...
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