Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 , Do you mean he's going to put her in AFO's without a bar or the moveable bar with AFO's attached? He's been using a different bar that allows the legs to move independently (hinges) and the last pictures seen of this bar didn't use the shoes but AFO's. If no bar, why is he only using AFO's? Kori At 07:18 AM 1/31/2005, you wrote: >hey!! grace had her consult with dr dobbs thursday... although it >was very depressing it was also a relief... she will have to have >the heel cord release on her Achilles done again... but he said >that's it... and then he is going to put her in the AFO that he >designed until she's 4 years old... so she has her surgery on friday >morning... him and his whole staff were awsome... i thought >vanderbilt was great... but st louis children's hospital is >wonderful... he put her in full leg casts till friday to try and >stretch as much as possible and she is really mad at them... she >can't really stand and she was standing (although not walking) about >75% of the time... and she's a climber... climbs on everything... >she has a little mini chair that her nana bought for her and she >can't get in it normal.. she has to climb over the arms to get in... >so she can't do any of that anymore and that makes her mad... but >only for 3 weeks... then she goes to the AFO for 3 months 23/7 and >then only to night time... and he said he may reduce to night time >sooner because of her advanced age... so we will see... it was a >good visit even though i cried at feeling like i have failed her >this whole last year... but live and learn i guess... i will let you >know how the surgery goes!!! > > mommy to Grace 12-03-03 BCF > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 ok... way out of my league... he called them AFO's.. but said they would be hinged... i didn't get to see them.... so i am not sure... he did a mold of her calf and foot and said he was making the inserts to fit... and said that she would get at least a years use out of this brace before having to have another one made... said he could change the inserts to a larger size when needed... does that make better sense? do you have pictures of what it will look like? do you not think this is right? mommy to Grace 12-03-03 BCF frogabog frogabog@...> wrote: , Do you mean he's going to put her in AFO's without a bar or the moveable bar with AFO's attached? He's been using a different bar that allows the legs to move independently (hinges) and the last pictures seen of this bar didn't use the shoes but AFO's. If no bar, why is he only using AFO's? Kori lisa caroland __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 , It sounds like he is making the same brace w/ AFO's that Sammy wears. You can see pictures of it in the photos section on the CFpics group. I don't think he would prescribe AFO's w/o the bar, and since he said it would be hinged that sounds like he is referring to the bar he designed. We see Dr. Dobbs at Children's Hospital too, we love it there. Everyone is so nice. > , > > Do you mean he's going to put her in AFO's without a bar or the moveable > bar with AFO's attached? He's been using a different bar that allows the > legs to move independently (hinges) and the last pictures seen of this bar > didn't use the shoes but AFO's. If no bar, why is he only using AFO's? > > Kori > > > > lisa caroland > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 No, that's what I thought. We have pics of this brace in the photo library at CFPics if you want to check it out. It's basically a FAB with a hinged bar and AFO's attached instead of shoes. You'll have to let us know how you like the AFO's as opposed to the shoes. My question about these would be the lack of ability for the ankle to flex. I like that about the shoes and I think she's got more dorsiflexion than she originally had after correction because of this. If it were me, I would try the AFO's but keep in mind that the shoes may work just as well if not better in this respect (the ankle flexing thing). Then again I'm no doc so that's just what I *think*. I also am not terribly interested in dealing with the sweating that happens in AFO's but perhaps this insert thing helps with that too. At any rate, we'll be waiting for your report on these! So far, the two parents who have them are fairly pleased. Kori At 08:47 AM 1/31/2005, you wrote: >ok... way out of my league... he called them AFO's.. but said they would >be hinged... i didn't get to see them.... so i am not sure... he did a >mold of her calf and foot and said he was making the inserts to fit... and >said that she would get at least a years use out of this brace before >having to have another one made... said he could change the inserts to a >larger size when needed... does that make better sense? do you have >pictures of what it will look like? do you not think this is right? > > mommy to Grace 12-03-03 BCF > >frogabog frogabog@...> wrote: >, > >Do you mean he's going to put her in AFO's without a bar or the moveable >bar with AFO's attached? He's been using a different bar that allows the >legs to move independently (hinges) and the last pictures seen of this bar >didn't use the shoes but AFO's. If no bar, why is he only using AFO's? > >Kori > > > >lisa caroland > > > > > > > > > > > > > > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 , I think it is great news that you have finally found a Ponseti qualified doc. It seems you are on your way to perfect little feet. Even though another tenotomy has to be done, that actually isn't so bad. It certainly could be worse. Good luck and keep us updated throughout treatment. Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 I wish you and Grace the best and hope everything turns out ok. Was your daughter walking yet? your daughter and mine are only 13 days apart. Dont bet yourself up about it, Im sure you are doing the best for her. Im sure she will be climbing " nana " s chair in no time! and BL CF 12/16/03 > > hey!! grace had her consult with dr dobbs thursday... although it > was very depressing it was also a relief... she will have to have > the heel cord release on her Achilles done again... but he said > that's it... and then he is going to put her in the AFO that he > designed until she's 4 years old... so she has her surgery on friday > morning... him and his whole staff were awsome... i thought > vanderbilt was great... but st louis children's hospital is > wonderful... he put her in full leg casts till friday to try and > stretch as much as possible and she is really mad at them... she > can't really stand and she was standing (although not walking) about > 75% of the time... and she's a climber... climbs on everything... > she has a little mini chair that her nana bought for her and she > can't get in it normal.. she has to climb over the arms to get in... > so she can't do any of that anymore and that makes her mad... but > only for 3 weeks... then she goes to the AFO for 3 months 23/7 and > then only to night time... and he said he may reduce to night time > sooner because of her advanced age... so we will see... it was a > good visit even though i cried at feeling like i have failed her > this whole last year... but live and learn i guess... i will let you > know how the surgery goes!!! > > mommy to Grace 12-03-03 BCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 , I was in the exact same boat as you (and many others on this board as well). My daughter started relapsing at 5 months. At that time she was wearing KAFO's and I didn't know anything about the correct Ponseti protocol, etc. I started research on the internet and discovered this site at that time. Everyone on this site pretty much told me to throw the AFO's out the window and get a 2nd opinion. I went to Dr. Herzenberg for a second opinion when she was 5 1/2 months old. We had to start treatment over from the beginning with the weekly casts and another tenotomy. I was devastated and thought I was a horrible mother for not doing research from the very beginning. And because I didn't do my homework, my poor daughter has to start this nightmare all over again. After about a week of feeling sorry for myself and I decided I had to get over it and start thinking about the future. Now we have a fabulous doctor, it can't go bad from here, etc. I moved on quick and start thinking positive. If you are feeling sorry for yourself continuously, the baby will pick up on it quick! Be thankful you have done the right thing. So it was later rather than sooner. That is better than not at all. She will thank you someday for that. Congrats on making that step. Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 thank you for your words... that was just what i needed... to know that i am not the only one that didn't look from the beginning... but she has doctor now and is going to be ok... and that's all that matters in the long run... but thank you again... mommy to Grace 12-03-03 BCF susan.shook@... wrote: , I was in the exact same boat as you (and many others on this board as well). My daughter started relapsing at 5 months. At that time she was wearing KAFO's and I didn't know anything about the correct Ponseti protocol, etc. I started research on the internet and discovered this site at that time. Everyone on this site pretty much told me to throw the AFO's out the window and get a 2nd opinion. I went to Dr. Herzenberg for a second opinion when she was 5 1/2 months old. We had to start treatment over from the beginning with the weekly casts and another tenotomy. I was devastated and thought I was a horrible mother for not doing research from the very beginning. And because I didn't do my homework, my poor daughter has to start this nightmare all over again. After about a week of feeling sorry for myself and I decided I had to get over it and start thinking about the future. Now we have a fabulous doctor, it can't go bad from here, etc. I moved on quick and start thinking positive. If you are feeling sorry for yourself continuously, the baby will pick up on it quick! Be thankful you have done the right thing. So it was later rather than sooner. That is better than not at all. She will thank you someday for that. Congrats on making that step. lisa caroland __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 lisa, i understand your frustration. I feel the same. I also believed my daughter would have started walking a long time ago but her feet were not corrected. makes me so mad because the first and second dr. told me the same that she was fine. you know that is a good sign that she tried to balance and walk with 1 caast on. these kids are truely amazing, so do not under estimate her! samantha is going on 2 and half weeks of wearing her brace 23/7. dr. ponseti did not have her do the 3 months because of her age. he told me " your daughter has been ready to walk, except her feet were not corrected and i dont think they ever were. " it was hard to hear that since i was taking her to the " best " doctors. so she only has a couple more weeks of 23/7. he only had her so 6 weeks. so they may do that also for your daughter. so dont worry enjoy her all you can! and BL CF 12/16/03 > > I wish you and Grace the best and hope everything turns out ok. > Was your daughter walking yet? your daughter and mine are only 13 > days apart. > Dont bet yourself up about it, Im sure you are doing the best for > her. Im sure she will be climbing " nana " s chair in no time! > and > BL CF 12/16/03 > > > lisa caroland > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 I know what you mean about the red flags, we saw it too but her 2 dr.'s did not, and one was supposeably following dr.p method! our daughter's will soon be getting into everything (if they havent already!) and doing all those cute things little girls do! i am so glad and thankful to be a part of this group because as you realized we are not alone and it is so comforting to know that there are people out there that have been there and know what we are going through. We wish you and Grace(love that name) the best! and BL CF 12/16/03 > > she only has to wear them 23/7 for 6 weeks. so glad! samantha > actually did pretty good with her first 2 sets of casts. the third > one she started getting pretty uncomfortable. i know about the lack > of sleep! she would not take naps and would wake up constantly at > night. i felt so bad cause i knew she was uncomfortable. > but the good thing is when she went into her mitchell shoes she did > great! and i say this because when she was in the markell shoes it > was a nightmare! she never wore those shoes for 23 hours! i felt so > bad because when i told dr.p this he said she was miserable because > her feet were not corrected and then she had this shoes on that were > not helping. > dont worry the 3 weeks will go by quickly, before you know it she > will be out of them. i know it doesnt feel like it right now but it > will. i felt like i was waiting an eternity to get those casts off > but i was so excited to finally see her feet the way they were > supposed to be! her feet are so flexible now.did she have the heel > cord released? dr.p thought she would need it again but he did such > a good job casting her that she did not need it. im glad to hear she > is on her way to perfect little feet also. > and I send you two a big hug! Hang in there! > and > BL CF 12/16/03 > s 23/7 > > > > lisa caroland > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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