Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 - What region do you live in? Maybe we can help you find another specialist for a second opinion on the status of Kaitlyn's foot. Here's Hall's old email address- you can try emailing her to see if she can help you figure out a way to troubleshoot the issues with the shoe on the non-clubfoot via email: m_jhall@... There is the option of using a standard tennis shoe and glueing it onto the brace if this is the only way to get a shoe to fit that foot (I'm still floored that you have issues with only the non- clubfoot!). There are pictures of using standard shoes in the files section. (this was more necessary for the littlest babies before Markell came out with the smallest shoes for the brace) You should probably also email to see about the custom sandals. I hope that you're able to keep her foot snug in that shoe to prevent more sores. I'm sorry the AFO was such a disappointment. Maybe you can refuse payment since the brace does not do what they said it would. I can't believe they tried to tether from the toe to the top of the AFO and tell you that it would create outward rotation- that's so sad! HUGS to you! Keep us posted. & (3-16-00) > Well, it took me all of 30 minutes to decide that the AFO's are junk. > Tethers??? What in the world is the purpose of them? They don't do a thing. > They are from the toe to the top of the AFO, but serve no purpose since the > AFO is made of hard plastic anyway. I guess they are just for looks or > something...Maybe to make me feel better. Her feet wiggle out and she had huge red > spots all the way up to her knee. Her leg was covered in sweat and she only wore > the thing for an hour. The external rotation that I was assured of is > nonexistent. They stated that the " leg is the anchor for the rotation " There was NO > rotation whatsoever. Just an L shaped piece of plastic that fits so tight she > can't even wear socks with it. Well, that was money well wasted. > I am not sure what to do at this point. I put her DBB back on her > tonight. She didn't get upset or anything. I guess I will check her feet during > the night to see what they look like, if she doesn't wake up first. Maybe if > she just sleeps in it for now, she won't wiggle enough to get a sore on her > non-CF. I just don't want to go any longer without any sort of brace on her > foot- it's already been too long as it is. > If she has the beginnings of another sore then I will cry in > frustration- atleast I know I have all of you to help support me through this tough > time. > Thanks for all of your input and I now completely agree with Dr. > Ponseti that AFO's are " useless in the treatment of CF. " Heck, all they had to do > was show me one and I wouldn't have wasted my money on one. > We didn't get home from getting the AFO until after 6 PM and I was so > disgusted I haven't taken pics yet. I will try to do that tomorrow and figure > out how to post them. > I want to thank everyone for the input and concern. Wish us luck with the > DBB AGAIN.... > Will let you know how it turns out. > > Freeman > Kaitlin Freeman 3/9/04 LCF > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Sorry the AFO's were such a disappointment for you. My orthist took a lot of time with them and even reheated the plastic and reformed spots so that she wouldn't get a sore spot. I was of the same opinion you are though that they just don't hold a good enough rotation. How did the DBB go last night? I have a bar (I don't know how long it is) that has a clamp on kind of devise that you could attach any kind of shoes to it. I could measure it tonight to see if it would be long enough for you and then you could use any shoes to hold correction. Let me know if you want more info on it, I think it might work realy well for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 LOL - Poor you! You sound just *thrilled* with those. They didn't show them to you before they casted her up for them? At least a picture or something. That's too bad. Can you refuse them so you won't have to pay for them? I'm still confused over what this tether thing is. I've seen AFO's but I just can't picture what a tether would be on one. For whatever it's worth - the AFO should have some holes drilled in it so her foot/leg can breathe and I have heard of parents putting powder of some sort in them to help with the sweating. Still a lot of plastic to sweat up a little baby leg. So how did last night go? How does her foot look? Did she wake much? I hope today finds you with happy feet and no sores. Are you subbed to the CFPics list? That's where you can send your pics - just attach them to an email and send them to the list. There's not much room there in the photos section - we already filled it up once and still need to delete and re-arrange some things there in that area so just attach or embed in an email and we'll get it. Hugs to you and Kaitlin! Kori & Darbi At 08:39 PM 6/15/2004, you wrote: > Well, it took me all of 30 minutes to decide that the AFO's are > junk. > Tethers??? What in the world is the purpose of them? They don't do a thing. >They are from the toe to the top of the AFO, but serve no purpose since the >AFO is made of hard plastic anyway. I guess they are just for looks or >something...Maybe to make me feel better. Her feet wiggle out and she had >huge red >spots all the way up to her knee. Her leg was covered in sweat and she >only wore >the thing for an hour. The external rotation that I was assured of is >nonexistent. They stated that the " leg is the anchor for the rotation " >There was NO >rotation whatsoever. Just an L shaped piece of plastic that fits so tight >she >can't even wear socks with it. Well, that was money well wasted. > I am not sure what to do at this point. I put her DBB back on her >tonight. She didn't get upset or anything. I guess I will check her feet >during >the night to see what they look like, if she doesn't wake up first. Maybe if >she just sleeps in it for now, she won't wiggle enough to get a sore on her >non-CF. I just don't want to go any longer without any sort of brace on her >foot- it's already been too long as it is. > If she has the beginnings of another sore then I will cry in >frustration- atleast I know I have all of you to help support me through >this tough >time. > Thanks for all of your input and I now completely agree with Dr. >Ponseti that AFO's are " useless in the treatment of CF. " Heck, all they >had to do >was show me one and I wouldn't have wasted my money on one. > We didn't get home from getting the AFO until after 6 PM and I was so >disgusted I haven't taken pics yet. I will try to do that tomorrow and >figure >out how to post them. >I want to thank everyone for the input and concern. Wish us luck with the >DBB AGAIN.... >Will let you know how it turns out. > > Freeman >Kaitlin Freeman 3/9/04 LCF > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Hi , I am so sorry that it is not going to work out! I know you were hoping this would solve the problem. I was hoping for the best! At least you know you tried that option. Are you going with the sandals next? She does have the size 0000 Markell shoes, correct? I am sure you have tried all different ways to keep the various shoes and bar you have had on, but I am going to mention this because it happened to us last week. Zoe is almost 4 mos old, so her feet are still very small. Last week I put some thinner socks on her and the cf started pulling a bit. I tightened the shoe and it was still slipping. Put the thick socks back on and no problem. I know your problems is with the noncf, but if you have not tried it, maybe worth a shot with thicker socks, or I have read about putting two pairs on. I wish you all the luck with trying the FAB again! Keep us posted on how you guys are! Louisa and little Zoe 2-22-04 Rt Uni CF > Well, it took me all of 30 minutes to decide that the AFO's are junk. > Tethers??? What in the world is the purpose of them? They don't do a thing. > They are from the toe to the top of the AFO, but serve no purpose since the > AFO is made of hard plastic anyway. I guess they are just for looks or > something...Maybe to make me feel better. Her feet wiggle out and she had huge red > spots all the way up to her knee. Her leg was covered in sweat and she only wore > the thing for an hour. The external rotation that I was assured of is > nonexistent. They stated that the " leg is the anchor for the rotation " There was NO > rotation whatsoever. Just an L shaped piece of plastic that fits so tight she > can't even wear socks with it. Well, that was money well wasted. > I am not sure what to do at this point. I put her DBB back on her > tonight. She didn't get upset or anything. I guess I will check her feet during > the night to see what they look like, if she doesn't wake up first. Maybe if > she just sleeps in it for now, she won't wiggle enough to get a sore on her > non-CF. I just don't want to go any longer without any sort of brace on her > foot- it's already been too long as it is. > If she has the beginnings of another sore then I will cry in > frustration- atleast I know I have all of you to help support me through this tough > time. > Thanks for all of your input and I now completely agree with Dr. > Ponseti that AFO's are " useless in the treatment of CF. " Heck, all they had to do > was show me one and I wouldn't have wasted my money on one. > We didn't get home from getting the AFO until after 6 PM and I was so > disgusted I haven't taken pics yet. I will try to do that tomorrow and figure > out how to post them. > I want to thank everyone for the input and concern. Wish us luck with the > DBB AGAIN.... > Will let you know how it turns out. > > Freeman > Kaitlin Freeman 3/9/04 LCF > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Thanks , Her bar is set at 9 1/2 inches. I am not sure how long the actual bar is since it is the red adjustable bar. Did you have to use shoes other than the Markells? Did they help? IDo you think it would help us? If so I would be very interested in trying that as an option. I think I might write Dr. Ponseti tomorrow night. Thank you again, Freeman Kaitlin Freeman 3/9/04 LCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Thanks , Her bar is set at 9 1/2 inches. I am not sure how long the actual bar is since it is the red adjustable bar. Did you have to use shoes other than the Markells? Did they help? IDo you think it would help us? If so I would be very interested in trying that as an option. I think I might write Dr. Ponseti tomorrow night. Thank you again, Freeman Kaitlin Freeman 3/9/04 LCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 , Definitely write to Dr Ponseti. If you have a digital cam take pictures and send him pictures too. I would guess that he will suggest the shoes since her feet are an unusual shape since they can be custom made. If you would like to see photos of the shoes let me know m_kitaki@... and I will send some to you (I have some nice close-ups I took for and Dr P). Angel Re: Re: AFO's suck Thanks , Her bar is set at 9 1/2 inches. I am not sure how long the actual bar is since it is the red adjustable bar. Did you have to use shoes other than the Markells? Did they help? IDo you think it would help us? If so I would be very interested in trying that as an option. I think I might write Dr. Ponseti tomorrow night. Thank you again, Freeman Kaitlin Freeman 3/9/04 LCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I forgot to measure the bar last night. I might run home at noon. If I do I will measure it then. I think it might work for you because you can put any shoes with a sole on it. Sense you are having problems with the non clubfoot foot you could use any shoe that fits well on the brace. The original shoes that came with it were not Markell shoes and they didn't work for us because her foot wouldn't stay in. They don't have the strap just laces. Then when we got the Markell shoes we just clamped them on there and it worked fine except her foot wouldn't stay in them either (lack of correction and atypical feet. You could even put some sandals on them and make your own like brace. I will bring it with me to work at noon and let you know how it is fixed to the bar and you might even be able to put it on your bar. We had a great Orthist who was willing to work with us. If you want to give me your address I can send them to you today. You don't have to pay anything for them just pass them on to someone else who needs them when you are done with them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 , I would really appreciate it if you could send me the bar. It would surely be worth a try. My address is: 2242 Shumard Circle Indian Trail, NC 28079 I will pay for shipping if you tell me how much. THANK YOU!!!!! Freeman Kaitlin Freeman 3/9/04 LCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Are you on the picture list? sent out some pictures of what I have! Let me know if you want me to forward you the pictures. I will send the bar on Monday. I think the bar is way to short but you can get your brace shop to attach the thing that holds the shoes onto your bar I think. How has she been doing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 How do I get on the pictures list? Kaitlin is doing alright I guess, I really want her to see Dr. Frick though since he is a ponseti certified doctor. I think I might try emailing him since someone gave me his address. Please do forward the pics to me. Thanks, Freeman Kaitlin Freeman 3/9/04 LCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 I email him all the time. He totally responds to parents. Give it a shot- he will get you in- I know he will. If you want her to see him go for it. It is sad if the person who answers his calls does not share his passion. But hey- you wont have to deal with her much at all. Good luck! Re: Re: AFO's suck > How do I get on the pictures list? Kaitlin is doing alright I guess, I > really want her to see Dr. Frick though since he is a ponseti certified doctor. I > think I might try emailing him since someone gave me his address. > Please do forward the pics to me. > Thanks, > Freeman > Kaitlin Freeman 3/9/04 LCF > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Go to http://health.groups.yahoo.com/group/CFPics and subscribe. You will have to fill out a subscription questionaire and return it then you will be approved! Angel Re: Re: AFO's suck How do I get on the pictures list? Kaitlin is doing alright I guess, I really want her to see Dr. Frick though since he is a ponseti certified doctor. I think I might try emailing him since someone gave me his address. Please do forward the pics to me. Thanks, Freeman Kaitlin Freeman 3/9/04 LCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 , I read your post and you have my sympathies. The DBB will be okay, you'll see. My daughter Rose is almost exactly 1 year older than your Kaitlin (3/12/03) and has a right club foot. Rose has been using the DBB for almost exactly a year now. She does just fine with it. Sometimes when she is cranky, I have trouble getting the shoes on her but from the time she was just little, I would sit her in her high chair (it reclined for infants) and dangle her feet and put the shoes on while she drank a bottle. As long as she is distracted, she lets me put them on every time. I have never subscribed to the " as tight as you can " doctrine. I hate it when my shoes are too tight and cut off my circulation and I assume she does too. I tie her shoes snugly but not too tight and for the most part she dosn't try to get them off. I don't know what kind of bar you have, but we have the kind that you can remove the shoes and put them on the baby one at a time and then reattach the bar. That has worked wonders for us, although you have to watch out from getting stabbed by the posts on the bottom of the shoes. As one year out, I can also tell you that Rose is walking and getting around just fine. She just had a checkup last week and the Dr. said her foot looks " perfect " . Just hang in there and try not to hate the DBB too much. I would love to hurl the @*#$#@ thing off the deck but I know it is going to keep my baby's foot away from surgery and all that goes with that. Best of luck, Robin & Rose 3/11/03 Right club foot. MJZ28SS@... wrote: Well, it took me all of 30 minutes to decide that the AFO's are junk. Tethers??? What in the world is the purpose of them? They don't do a thing. They are from the toe to the top of the AFO, but serve no purpose since the AFO is made of hard plastic anyway. I guess they are just for looks or something...Maybe to make me feel better. Her feet wiggle out and she had huge red spots all the way up to her knee. Her leg was covered in sweat and she only wore the thing for an hour. The external rotation that I was assured of is nonexistent. They stated that the " leg is the anchor for the rotation " There was NO rotation whatsoever. Just an L shaped piece of plastic that fits so tight she can't even wear socks with it. Well, that was money well wasted. I am not sure what to do at this point. I put her DBB back on her tonight. She didn't get upset or anything. I guess I will check her feet during the night to see what they look like, if she doesn't wake up first. Maybe if she just sleeps in it for now, she won't wiggle enough to get a sore on her non-CF. I just don't want to go any longer without any sort of brace on her foot- it's already been too long as it is. If she has the beginnings of another sore then I will cry in frustration- atleast I know I have all of you to help support me through this tough time. Thanks for all of your input and I now completely agree with Dr. Ponseti that AFO's are " useless in the treatment of CF. " Heck, all they had to do was show me one and I wouldn't have wasted my money on one. We didn't get home from getting the AFO until after 6 PM and I was so disgusted I haven't taken pics yet. I will try to do that tomorrow and figure out how to post them. I want to thank everyone for the input and concern. Wish us luck with the DBB AGAIN.... Will let you know how it turns out. Freeman Kaitlin Freeman 3/9/04 LCF Quote Link to comment Share on other sites More sharing options...
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