Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 , That's just plain scary. Is there another doc in your area where you could take Dr. Ponseti's info and get a second opinion? Or perhaps get him treated by a doc that has experience with atypical CF? If Dr. P. says it's atypical and needs the other shoes you're setting yourself up for failure and distress (perhaps pain for Kody with shoes that slip and cause sores/blisters) and I would absolutely heed Dr. P's advice here. I would also question the application of the casts and the technique. I would be concerned that the foot did not get the proper correction personally. It also does seem weird to change the cast so early. Even without the tenotomy my daughter was in her last cast over 2w. Can you get to Iowa? At this point, after learning what I have about this atypical CF it appears that these feet were the 5% that needed surgery however now Dr. Ponseti feels that they can be corrected and stay corrected with a little extra special care and tweaking. But since it seems a lot of docs are still modifying thinking they know more/better I wouldn't trust just any doc to take care of it. I hate to say it, but I probably wouldn't trust our doc with this diagnosis unless he was communicating directly with Dr. Ponseti and following his advice in regards to my daughters specific care. I would likely find some way to get to Iowa if it were me. Well, that's just my take on it all. It sounds really strange to hear Dr. Ponseti say the casts look sloppy... ouch! Must mean something... Best of luck to you in whatever decision you make. Kori Mama of Kenton 6/98 Merek 3/00 Darbi 3/03 - Rt. CF - DBB 12hr/day (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ At 12:23 PM 7/19/2004, you wrote: >Thank you everybody for your support and thoughts! >So this it how it went: >Kody was not allowed to eat for 4 hours before the tenotomy and >Dr. King didn't want anybody of us in the room (but I insisted that >my husband will stay). >They gave him two different kind of anesthetic (I don't know why) >and the whole procedure lasted like 15-20 min. Poor Kody screamed >the >whole time! The cast they put on looks terrible!!! They put soo much >padding under that it looks like an elephantfoot and it's one of the >worst cast they applied so far! Also pretty weird is that they ask >us >to come back next friday to change the cast???! on wednesday they >said the cast will stay on 3-4 weeks. Then on friday right after the >surgery they said 2 weeks and then he checked >later (30 min after the cast was put on) and said one week!!! >Another thing what happened last week is: >I send (finally)some pics (with and without cast)to Dr. Ponseti and >he called me back right away and said that Kody is one of the rare >cases with atypical clubfoot (Nobody else said something like that >to us before!!). That the treatment suppose to be a little bit >different: the angle is not suppose to be 70 degree but 40. And he >was telling me that the casts he saw on the pictures looked sloppy... >I was so confused when I went to that Dr. on Friday to let him cut >my little baby. I'm not very happy with this Dr. Dr. P strongly >recommended us to use the shoes for Kody and Dr King is >just so against it (my patients can not afford $400 for a pair of >shoes (he didn't even ask us if we can afford it or not!!!)) >It's not very efficient if the Dr. is not supporting your opinion. >Please if somebody could tell me if any other Dr. changed the cast >after one week after the tenotomy. I can only imagine that this is >not a very good idea since the tendon is not healed yet there could >be probably a bigger damage to it, or not?? > >, > >Kody 2/1/04 rt CF >Serendy 6/29/02 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 , That's just plain scary. Is there another doc in your area where you could take Dr. Ponseti's info and get a second opinion? Or perhaps get him treated by a doc that has experience with atypical CF? If Dr. P. says it's atypical and needs the other shoes you're setting yourself up for failure and distress (perhaps pain for Kody with shoes that slip and cause sores/blisters) and I would absolutely heed Dr. P's advice here. I would also question the application of the casts and the technique. I would be concerned that the foot did not get the proper correction personally. It also does seem weird to change the cast so early. Even without the tenotomy my daughter was in her last cast over 2w. Can you get to Iowa? At this point, after learning what I have about this atypical CF it appears that these feet were the 5% that needed surgery however now Dr. Ponseti feels that they can be corrected and stay corrected with a little extra special care and tweaking. But since it seems a lot of docs are still modifying thinking they know more/better I wouldn't trust just any doc to take care of it. I hate to say it, but I probably wouldn't trust our doc with this diagnosis unless he was communicating directly with Dr. Ponseti and following his advice in regards to my daughters specific care. I would likely find some way to get to Iowa if it were me. Well, that's just my take on it all. It sounds really strange to hear Dr. Ponseti say the casts look sloppy... ouch! Must mean something... Best of luck to you in whatever decision you make. Kori Mama of Kenton 6/98 Merek 3/00 Darbi 3/03 - Rt. CF - DBB 12hr/day (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ At 12:23 PM 7/19/2004, you wrote: >Thank you everybody for your support and thoughts! >So this it how it went: >Kody was not allowed to eat for 4 hours before the tenotomy and >Dr. King didn't want anybody of us in the room (but I insisted that >my husband will stay). >They gave him two different kind of anesthetic (I don't know why) >and the whole procedure lasted like 15-20 min. Poor Kody screamed >the >whole time! The cast they put on looks terrible!!! They put soo much >padding under that it looks like an elephantfoot and it's one of the >worst cast they applied so far! Also pretty weird is that they ask >us >to come back next friday to change the cast???! on wednesday they >said the cast will stay on 3-4 weeks. Then on friday right after the >surgery they said 2 weeks and then he checked >later (30 min after the cast was put on) and said one week!!! >Another thing what happened last week is: >I send (finally)some pics (with and without cast)to Dr. Ponseti and >he called me back right away and said that Kody is one of the rare >cases with atypical clubfoot (Nobody else said something like that >to us before!!). That the treatment suppose to be a little bit >different: the angle is not suppose to be 70 degree but 40. And he >was telling me that the casts he saw on the pictures looked sloppy... >I was so confused when I went to that Dr. on Friday to let him cut >my little baby. I'm not very happy with this Dr. Dr. P strongly >recommended us to use the shoes for Kody and Dr King is >just so against it (my patients can not afford $400 for a pair of >shoes (he didn't even ask us if we can afford it or not!!!)) >It's not very efficient if the Dr. is not supporting your opinion. >Please if somebody could tell me if any other Dr. changed the cast >after one week after the tenotomy. I can only imagine that this is >not a very good idea since the tendon is not healed yet there could >be probably a bigger damage to it, or not?? > >, > >Kody 2/1/04 rt CF >Serendy 6/29/02 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 , That's just plain scary. Is there another doc in your area where you could take Dr. Ponseti's info and get a second opinion? Or perhaps get him treated by a doc that has experience with atypical CF? If Dr. P. says it's atypical and needs the other shoes you're setting yourself up for failure and distress (perhaps pain for Kody with shoes that slip and cause sores/blisters) and I would absolutely heed Dr. P's advice here. I would also question the application of the casts and the technique. I would be concerned that the foot did not get the proper correction personally. It also does seem weird to change the cast so early. Even without the tenotomy my daughter was in her last cast over 2w. Can you get to Iowa? At this point, after learning what I have about this atypical CF it appears that these feet were the 5% that needed surgery however now Dr. Ponseti feels that they can be corrected and stay corrected with a little extra special care and tweaking. But since it seems a lot of docs are still modifying thinking they know more/better I wouldn't trust just any doc to take care of it. I hate to say it, but I probably wouldn't trust our doc with this diagnosis unless he was communicating directly with Dr. Ponseti and following his advice in regards to my daughters specific care. I would likely find some way to get to Iowa if it were me. Well, that's just my take on it all. It sounds really strange to hear Dr. Ponseti say the casts look sloppy... ouch! Must mean something... Best of luck to you in whatever decision you make. Kori Mama of Kenton 6/98 Merek 3/00 Darbi 3/03 - Rt. CF - DBB 12hr/day (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ At 12:23 PM 7/19/2004, you wrote: >Thank you everybody for your support and thoughts! >So this it how it went: >Kody was not allowed to eat for 4 hours before the tenotomy and >Dr. King didn't want anybody of us in the room (but I insisted that >my husband will stay). >They gave him two different kind of anesthetic (I don't know why) >and the whole procedure lasted like 15-20 min. Poor Kody screamed >the >whole time! The cast they put on looks terrible!!! They put soo much >padding under that it looks like an elephantfoot and it's one of the >worst cast they applied so far! Also pretty weird is that they ask >us >to come back next friday to change the cast???! on wednesday they >said the cast will stay on 3-4 weeks. Then on friday right after the >surgery they said 2 weeks and then he checked >later (30 min after the cast was put on) and said one week!!! >Another thing what happened last week is: >I send (finally)some pics (with and without cast)to Dr. Ponseti and >he called me back right away and said that Kody is one of the rare >cases with atypical clubfoot (Nobody else said something like that >to us before!!). That the treatment suppose to be a little bit >different: the angle is not suppose to be 70 degree but 40. And he >was telling me that the casts he saw on the pictures looked sloppy... >I was so confused when I went to that Dr. on Friday to let him cut >my little baby. I'm not very happy with this Dr. Dr. P strongly >recommended us to use the shoes for Kody and Dr King is >just so against it (my patients can not afford $400 for a pair of >shoes (he didn't even ask us if we can afford it or not!!!)) >It's not very efficient if the Dr. is not supporting your opinion. >Please if somebody could tell me if any other Dr. changed the cast >after one week after the tenotomy. I can only imagine that this is >not a very good idea since the tendon is not healed yet there could >be probably a bigger damage to it, or not?? > >, > >Kody 2/1/04 rt CF >Serendy 6/29/02 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Hi - I assume this is Dr. King in Tarzana...right??? If so he is fully aware of the Ponseti protocol on keeping the casts on for three weeks after the tenonomy. What did he say when you questioned him about only having Kody in it for a week??? Also what was his reason for saying 3-4 weeks and then changing his mind down to a week??? None of this makes any sense to me. Make sure you are questing him on everything. I would tell Dr. King you are in touch with Dr. P and are now aware your son has " atypical " clubfoot and how many cases of " atypical " clubfeet has he treated. I would then make my decision to take Kody to another doctor if he has not fixed this type of clubfoot before. Even with the best (meaning Dr. P) it can be a challenging foot to correct, but it is correctible. I've heard the shoes are a must in this case! It doesn't sound like Dr. King is looking out for Kody as he should. I strongly suggest another opinion from Dr. Colburn in the bay area. We live in Temecula (which is just north of San Diego) and travel to the bay area to see him. Many people say and I agree that he is the best on the west coast. He would be more than happy to discuss any concerns with you by phone. When I had problems with my San Diego doctor I called him because I was urged to from Charity on this board. He spent over 45 minutes with me and validated all my concerns. I'm so grateful I listen to my intuition and changed doctors. We've been with Dr. C since my son was 12 weeks old (he is now 2yrs 4 months) and I'm so grateful. Just last Friday I had a concern at 5:15pm and emailed Dr. C thinking I would hear back from his after the weekend. He emailed me at 6:00pm Firday night about my concern. My first doctor never took the time to explain things to me or put my mind at ease. Dr. Colburn walks me through everything and always gets back to me by email or phone with any concerns or questions I have. He is truly at top notch doctor. He is with Kaiser but does take patients who are not from Kaiser like ourselves. Here is his contact info: Colburn, D.P.M. The Permanente Medical Group 7601 Stoneridge Drive Pleasanton, CA 94588-2899 Tel: Fax: .Colburn@... Keep us posted, > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Update on Kodys tenotomy >Date: Mon, 19 Jul 2004 19:23:42 -0000 > >Thank you everybody for your support and thoughts! >So this it how it went: >Kody was not allowed to eat for 4 hours before the tenotomy and >Dr. King didn't want anybody of us in the room (but I insisted that >my husband will stay). >They gave him two different kind of anesthetic (I don't know why) >and the whole procedure lasted like 15-20 min. Poor Kody screamed >the >whole time! The cast they put on looks terrible!!! They put soo much >padding under that it looks like an elephantfoot and it's one of the >worst cast they applied so far! Also pretty weird is that they ask >us >to come back next friday to change the cast???! on wednesday they >said the cast will stay on 3-4 weeks. Then on friday right after the >surgery they said 2 weeks and then he checked >later (30 min after the cast was put on) and said one week!!! >Another thing what happened last week is: >I send (finally)some pics (with and without cast)to Dr. Ponseti and >he called me back right away and said that Kody is one of the rare >cases with atypical clubfoot (Nobody else said something like that >to us before!!). That the treatment suppose to be a little bit >different: the angle is not suppose to be 70 degree but 40. And he >was telling me that the casts he saw on the pictures looked sloppy... >I was so confused when I went to that Dr. on Friday to let him cut >my little baby. I'm not very happy with this Dr. Dr. P strongly >recommended us to use the shoes for Kody and Dr King is >just so against it (my patients can not afford $400 for a pair of >shoes (he didn't even ask us if we can afford it or not!!!)) >It's not very efficient if the Dr. is not supporting your opinion. >Please if somebody could tell me if any other Dr. changed the cast >after one week after the tenotomy. I can only imagine that this is >not a very good idea since the tendon is not healed yet there could >be probably a bigger damage to it, or not?? > >, > >Kody 2/1/04 rt CF >Serendy 6/29/02 > _________________________________________________________________ Discover the best of the best at MSN Luxury Living. http://lexus.msn.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Hi - I assume this is Dr. King in Tarzana...right??? If so he is fully aware of the Ponseti protocol on keeping the casts on for three weeks after the tenonomy. What did he say when you questioned him about only having Kody in it for a week??? Also what was his reason for saying 3-4 weeks and then changing his mind down to a week??? None of this makes any sense to me. Make sure you are questing him on everything. I would tell Dr. King you are in touch with Dr. P and are now aware your son has " atypical " clubfoot and how many cases of " atypical " clubfeet has he treated. I would then make my decision to take Kody to another doctor if he has not fixed this type of clubfoot before. Even with the best (meaning Dr. P) it can be a challenging foot to correct, but it is correctible. I've heard the shoes are a must in this case! It doesn't sound like Dr. King is looking out for Kody as he should. I strongly suggest another opinion from Dr. Colburn in the bay area. We live in Temecula (which is just north of San Diego) and travel to the bay area to see him. Many people say and I agree that he is the best on the west coast. He would be more than happy to discuss any concerns with you by phone. When I had problems with my San Diego doctor I called him because I was urged to from Charity on this board. He spent over 45 minutes with me and validated all my concerns. I'm so grateful I listen to my intuition and changed doctors. We've been with Dr. C since my son was 12 weeks old (he is now 2yrs 4 months) and I'm so grateful. Just last Friday I had a concern at 5:15pm and emailed Dr. C thinking I would hear back from his after the weekend. He emailed me at 6:00pm Firday night about my concern. My first doctor never took the time to explain things to me or put my mind at ease. Dr. Colburn walks me through everything and always gets back to me by email or phone with any concerns or questions I have. He is truly at top notch doctor. He is with Kaiser but does take patients who are not from Kaiser like ourselves. Here is his contact info: Colburn, D.P.M. The Permanente Medical Group 7601 Stoneridge Drive Pleasanton, CA 94588-2899 Tel: Fax: .Colburn@... Keep us posted, > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Update on Kodys tenotomy >Date: Mon, 19 Jul 2004 19:23:42 -0000 > >Thank you everybody for your support and thoughts! >So this it how it went: >Kody was not allowed to eat for 4 hours before the tenotomy and >Dr. King didn't want anybody of us in the room (but I insisted that >my husband will stay). >They gave him two different kind of anesthetic (I don't know why) >and the whole procedure lasted like 15-20 min. Poor Kody screamed >the >whole time! The cast they put on looks terrible!!! They put soo much >padding under that it looks like an elephantfoot and it's one of the >worst cast they applied so far! Also pretty weird is that they ask >us >to come back next friday to change the cast???! on wednesday they >said the cast will stay on 3-4 weeks. Then on friday right after the >surgery they said 2 weeks and then he checked >later (30 min after the cast was put on) and said one week!!! >Another thing what happened last week is: >I send (finally)some pics (with and without cast)to Dr. Ponseti and >he called me back right away and said that Kody is one of the rare >cases with atypical clubfoot (Nobody else said something like that >to us before!!). That the treatment suppose to be a little bit >different: the angle is not suppose to be 70 degree but 40. And he >was telling me that the casts he saw on the pictures looked sloppy... >I was so confused when I went to that Dr. on Friday to let him cut >my little baby. I'm not very happy with this Dr. Dr. P strongly >recommended us to use the shoes for Kody and Dr King is >just so against it (my patients can not afford $400 for a pair of >shoes (he didn't even ask us if we can afford it or not!!!)) >It's not very efficient if the Dr. is not supporting your opinion. >Please if somebody could tell me if any other Dr. changed the cast >after one week after the tenotomy. I can only imagine that this is >not a very good idea since the tendon is not healed yet there could >be probably a bigger damage to it, or not?? > >, > >Kody 2/1/04 rt CF >Serendy 6/29/02 > _________________________________________________________________ Discover the best of the best at MSN Luxury Living. http://lexus.msn.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Hi - I assume this is Dr. King in Tarzana...right??? If so he is fully aware of the Ponseti protocol on keeping the casts on for three weeks after the tenonomy. What did he say when you questioned him about only having Kody in it for a week??? Also what was his reason for saying 3-4 weeks and then changing his mind down to a week??? None of this makes any sense to me. Make sure you are questing him on everything. I would tell Dr. King you are in touch with Dr. P and are now aware your son has " atypical " clubfoot and how many cases of " atypical " clubfeet has he treated. I would then make my decision to take Kody to another doctor if he has not fixed this type of clubfoot before. Even with the best (meaning Dr. P) it can be a challenging foot to correct, but it is correctible. I've heard the shoes are a must in this case! It doesn't sound like Dr. King is looking out for Kody as he should. I strongly suggest another opinion from Dr. Colburn in the bay area. We live in Temecula (which is just north of San Diego) and travel to the bay area to see him. Many people say and I agree that he is the best on the west coast. He would be more than happy to discuss any concerns with you by phone. When I had problems with my San Diego doctor I called him because I was urged to from Charity on this board. He spent over 45 minutes with me and validated all my concerns. I'm so grateful I listen to my intuition and changed doctors. We've been with Dr. C since my son was 12 weeks old (he is now 2yrs 4 months) and I'm so grateful. Just last Friday I had a concern at 5:15pm and emailed Dr. C thinking I would hear back from his after the weekend. He emailed me at 6:00pm Firday night about my concern. My first doctor never took the time to explain things to me or put my mind at ease. Dr. Colburn walks me through everything and always gets back to me by email or phone with any concerns or questions I have. He is truly at top notch doctor. He is with Kaiser but does take patients who are not from Kaiser like ourselves. Here is his contact info: Colburn, D.P.M. The Permanente Medical Group 7601 Stoneridge Drive Pleasanton, CA 94588-2899 Tel: Fax: .Colburn@... Keep us posted, > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Update on Kodys tenotomy >Date: Mon, 19 Jul 2004 19:23:42 -0000 > >Thank you everybody for your support and thoughts! >So this it how it went: >Kody was not allowed to eat for 4 hours before the tenotomy and >Dr. King didn't want anybody of us in the room (but I insisted that >my husband will stay). >They gave him two different kind of anesthetic (I don't know why) >and the whole procedure lasted like 15-20 min. Poor Kody screamed >the >whole time! The cast they put on looks terrible!!! They put soo much >padding under that it looks like an elephantfoot and it's one of the >worst cast they applied so far! Also pretty weird is that they ask >us >to come back next friday to change the cast???! on wednesday they >said the cast will stay on 3-4 weeks. Then on friday right after the >surgery they said 2 weeks and then he checked >later (30 min after the cast was put on) and said one week!!! >Another thing what happened last week is: >I send (finally)some pics (with and without cast)to Dr. Ponseti and >he called me back right away and said that Kody is one of the rare >cases with atypical clubfoot (Nobody else said something like that >to us before!!). That the treatment suppose to be a little bit >different: the angle is not suppose to be 70 degree but 40. And he >was telling me that the casts he saw on the pictures looked sloppy... >I was so confused when I went to that Dr. on Friday to let him cut >my little baby. I'm not very happy with this Dr. Dr. P strongly >recommended us to use the shoes for Kody and Dr King is >just so against it (my patients can not afford $400 for a pair of >shoes (he didn't even ask us if we can afford it or not!!!)) >It's not very efficient if the Dr. is not supporting your opinion. >Please if somebody could tell me if any other Dr. changed the cast >after one week after the tenotomy. I can only imagine that this is >not a very good idea since the tendon is not healed yet there could >be probably a bigger damage to it, or not?? > >, > >Kody 2/1/04 rt CF >Serendy 6/29/02 > _________________________________________________________________ Discover the best of the best at MSN Luxury Living. http://lexus.msn.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 , I am so sorry things turned out this way for you. We also experienced our baby screaming wildly during the tenotomy--isn't it awful? I know how stressful it all is when different docs are telling you different things. Taking off the post-tenotomy casts after one week seems very premature to me. It seems there has been some variation between 2 and 3 weeks (my son's were taken off at 2 weeks) but 1 week seems risky to me. Maybe the dr. realized that his casts were not so great and wanted to get them changed. I think I would take Kody, bad casts and all, to another doctor (preferrably off the Ponseti list) to get some more input on what would be best: leaving the bad casts for at least another week, or getting them off of there and replacing them with good ones ASAP. Are these casts rotated to a good degree even if they look strange? Evan's were rotated outward and toes up more than any of his other casts. The purpose of the tenotomy will not be achieved if the rotation and angle are not correct as it heals. Let us know what happens. We're sending lots of good wishes your way. and Evan (8-17-00 bcf) > Thank you everybody for your support and thoughts! > So this it how it went: > Kody was not allowed to eat for 4 hours before the tenotomy and > Dr. King didn't want anybody of us in the room (but I insisted that > my husband will stay). > They gave him two different kind of anesthetic (I don't know why) > and the whole procedure lasted like 15-20 min. Poor Kody screamed > the > whole time! The cast they put on looks terrible!!! They put soo much > padding under that it looks like an elephantfoot and it's one of the > worst cast they applied so far! Also pretty weird is that they ask > us > to come back next friday to change the cast???! on wednesday they > said the cast will stay on 3-4 weeks. Then on friday right after the > surgery they said 2 weeks and then he checked > later (30 min after the cast was put on) and said one week!!! > Another thing what happened last week is: > I send (finally)some pics (with and without cast)to Dr. Ponseti and > he called me back right away and said that Kody is one of the rare > cases with atypical clubfoot (Nobody else said something like that > to us before!!). That the treatment suppose to be a little bit > different: the angle is not suppose to be 70 degree but 40. And he > was telling me that the casts he saw on the pictures looked sloppy... > I was so confused when I went to that Dr. on Friday to let him cut > my little baby. I'm not very happy with this Dr. Dr. P strongly > recommended us to use the shoes for Kody and Dr King is > just so against it (my patients can not afford $400 for a pair of > shoes (he didn't even ask us if we can afford it or not!!!)) > It's not very efficient if the Dr. is not supporting your opinion. > Please if somebody could tell me if any other Dr. changed the cast > after one week after the tenotomy. I can only imagine that this is > not a very good idea since the tendon is not healed yet there could > be probably a bigger damage to it, or not?? > > , > > Kody 2/1/04 rt CF > Serendy 6/29/02 Quote Link to comment Share on other sites More sharing options...
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