Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 Hi!!I have been a lurker and have been reading your posts for a while now. You are all so nice and supportive. So I decided to share my story and see if I could find some answers. I was referred to an ortho in the hospital the day I gave birth to ..which was 5/2/00. His left foot was first casted at 7 days old..and then casted every 2 weeks for 6 months. Then he had a tenotomy at 10 months old. I thought my ortho was using the Ponseti method..but was wrong!!!! The doc kept saying his foot looked great and was corrected..but was still walking on the outside of his foot! To make a long story short we went to a new ortho today and he took xrays and showed us how his foot is FAR from being corrected. He showed us how his bones are not lined up where they should be and that is why is walking on the outside of his foot. Now it is like starting over from step one...THE RIGHT WAY! He is going to be casted each week for 5-6 weeks. Then he will have to wear the DBB for 24 hrs for 3 months..then just for sleeping. My DH and I are dealing with a lot of guilt. We should have changed doc. long time ago...but we trusted this man with our baby and he told us that he was correcting fine. I am concerned because my son is 14 months old and is walking...now with the Ponseti cast on...he cannot walk...Then with the DBB on 24 hrs a day...he won't be able to walk! Do any of you have older children who had to deal with casts and DBB after your child was walking? I am so happy the new ortho is going to help me son. I wish we had gone to him earlier! I will never be able to forgive my self for that..but I am also excited that my son is getting the help he needs. Thank you for reading this and if you have any information that you can share my husband and I would appreciate it. It is so great to have a place like this to share with others! Take care, , , and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 , Welcome to the group! I hope you continue to share your son's progress with us. As far as your guilt, I would say that you have to let it go... to quote an Oprahism, you did then what you thought was best, and when you knew better you did better. He's getting proper treatment now, that's what's important. Beating yourself up over the delay does no one any good. Is your new ortho one of the doctors on Dr. Ponseti's list? (just checking...) I imagine that this will be a difficult road for you, your husband and son. will not be able to walk easily... some kids DO walk in casts or FAB. But I hope he will get used to it quickly. It will be a difficult 4 months (casts, then tenotomy, then FAB) but well worthwhile if done properly. I cannot provide you with more advice, but please continue to share your experience. There have been other children who started Ponseti treatment late (around one year old) and maybe they will be able to give you more help... but we are all here to support your family anyway. - & Emma 10-18-99 Ponseti treatment started at 3 months old. 14 month ds with left CL Hi!!I have been a lurker and have been reading your posts for a while now. You are all so nice and supportive. So I decided to share my story and see if I could find some answers. I was referred to an ortho in the hospital the day I gave birth to ..which was 5/2/00. His left foot was first casted at 7 days old..and then casted every 2 weeks for 6 months. Then he had a tenotomy at 10 months old. I thought my ortho was using the Ponseti method..but was wrong!!!! The doc kept saying his foot looked great and was corrected..but was still walking on the outside of his foot! To make a long story short we went to a new ortho today and he took xrays and showed us how his foot is FAR from being corrected. He showed us how his bones are not lined up where they should be and that is why is walking on the outside of his foot. Now it is like starting over from step one...THE RIGHT WAY! He is going to be casted each week for 5-6 weeks. Then he will have to wear the DBB for 24 hrs for 3 months..then just for sleeping. My DH and I are dealing with a lot of guilt. We should have changed doc. long time ago...but we trusted this man with our baby and he told us that he was correcting fine. I am concerned because my son is 14 months old and is walking...now with the Ponseti cast on...he cannot walk...Then with the DBB on 24 hrs a day...he won't be able to walk! Do any of you have older children who had to deal with casts and DBB after your child was walking? I am so happy the new ortho is going to help me son. I wish we had gone to him earlier! I will never be able to forgive my self for that..but I am also excited that my son is getting the help he needs. Thank you for reading this and if you have any information that you can share my husband and I would appreciate it. It is so great to have a place like this to share with others! Take care, , , and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 , , and I agree that none of us can change the past and should do what we can to be concerned about what we can do in the future instead. I assume that you realize that at 14 months old that the use of the Ponseti method without needing to do some kind of surgery is going to be more difficult than for a newborn. I especially would encourage you as soon as possible to call Dr. Ponseti and explain your situation if you haven't already. He will be glad to talk to you and give you advise and recommendations. As far as the Ponseti method, my guess is that Dr. Ponseti as the originator and the one who has used it for 50 years has the most experience with any situation relating to the use of his method. As Dr. Herzenberg had once mentioned to me, it is kind of like Dr. Ponseti is a 10th degree " black belt " in his method (a little Karate terminology). Please keep us informed on how things are going. and (3-17-99) > Hi!!I have been a lurker and have been reading your posts for a while > now. You are all so nice and supportive. So I decided to share my > story and see if I could find some answers. > > I was referred to an ortho in the hospital the day I gave birth to > ..which was 5/2/00. His left foot was first casted at 7 days > old..and then casted every 2 weeks for 6 months. Then he had a > tenotomy at 10 months old. I thought my ortho was using the Ponseti > method..but was wrong!!!! The doc kept saying his foot looked great > and was corrected..but was still walking on the outside of > his foot! > > To make a long story short we went to a new ortho today and he took > xrays and showed us how his foot is FAR from being corrected. He > showed us how his bones are not lined up where they should be and > that is why is walking on the outside of his foot. > > Now it is like starting over from step one...THE RIGHT WAY! He is > going to be casted each week for 5-6 weeks. Then he will have to wear > the DBB for 24 hrs for 3 months..then just for sleeping. > > My DH and I are dealing with a lot of guilt. We should have changed > doc. long time ago...but we trusted this man with our baby and he > told us that he was correcting fine. > > I am concerned because my son is 14 months old and is walking...now > with the Ponseti cast on...he cannot walk...Then with the DBB on 24 > hrs a day...he won't be able to walk! Do any of you have older > children who had to deal with casts and DBB after your child was > walking? > > I am so happy the new ortho is going to help me son. I wish we had > gone to him earlier! I will never be able to forgive my self for > that..but I am also excited that my son is getting the help he needs. > Thank you for reading this and if you have any information that you > can share my husband and I would appreciate it. It is so great to > have a place like this to share with others! > > Take care, > , , and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 , Welcome to the group! It's great to hear that you had such a reassuring visit with the new doctor. Please continue to share your son's progress with us. Good Luck! Tonya and San Diego, CA bilateral CF 7 casts, Tenotomy Dr. Colburn patient 6 months old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 ..thank you for your support...The new ortho is on Dr. Ponseti's list. His name is Dr. Van Bosse. He listened to us today...answered all of my questions..and was gentle with my son. thanks, & (14 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 , I think that Dr. Van Bosse and those at NYU are very capable in doing as well as possible in the use of the Ponseti method. Thank you for letting us know you were going to NYU. Please keep us informed and (3-17-99) > ..thank you for your support...The new ortho is on Dr. Ponseti's > list. His name is Dr. Van Bosse. > > He listened to us today...answered all of my questions..and was > gentle with my son. > > thanks, > & (14 months) Quote Link to comment Share on other sites More sharing options...
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