Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Hi guys, Just wanted to give everyone a update. I emailed Dr. Ponseti about Jaiden over a 1 1/2 ago, but I still haven't heard back from him. Jaiden got his cast off and I spoke with his doctor about putting him in AFO braces. He still maintains that he feels Jaiden would benefit better with AFOs. I did ask about FAB at night. He said that he had been in touch with MD from Iowa and they really aren't sure if FABs are necessary to wear at night or not, but he did not think Jaiden's had much of a problem with abduction. Since he still maintains that he feels that Jaiden had neurogenic cf I did request that Jaiden a pediatric neurologist and they are suppose to be setting that appointment up. I did also request that he do physical therapy. I was a little disappointed with Jaiden feet after the last cast. They still seemed to point downward more than I thought they should. His feet was flexible and you could pull it up to 90 degrees. He did cry initially when we flexed it up but now only grunts like it hurts. We got his AFOs on yesterday. I just scared that there is going to be a relaspe. I am anxious to hear back from Dr. Ponseti. Any suggestions? Nan Jaiden 6.5 mos blcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Just wait to hear from Dr. Ponseti but if you don't hear soon, say by the middle of next week, feel free to call his office or email again. He is usually fairly prompt with email. The advice and treatment your son is receiving sound very " off " to me, not at all what a Ponseti doctor would do. Since he is still very young, he can be treated by a good Ponseti doctor (or Dr. Ponseti himself) and have fully corrected feet, though. There are lots of " red flags " with this doctor's treatment and advice. For one, the FAB is the most important guard against relapse, and I wonder if your son's feet are truly corrected properly in the first place from your description. Others will chime in with more specifics...I have a baby to get to bed! Carol > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Update on Jaiden >Date: Sun, 16 Jul 2006 01:35:06 -0000 > >Hi guys, > >Just wanted to give everyone a update. I emailed Dr. Ponseti about >Jaiden over a 1 1/2 ago, but I still haven't heard back from him. >Jaiden got his cast off and I spoke with his doctor about putting >him in AFO braces. He still maintains that he feels Jaiden would >benefit better with AFOs. I did ask about FAB at night. He said >that he had been in touch with MD from Iowa and they really aren't >sure if FABs are necessary to wear at night or not, but he did not >think Jaiden's had much of a problem with abduction. Since he still >maintains that he feels that Jaiden had neurogenic cf I did request >that Jaiden a pediatric neurologist and they are suppose to be >setting that appointment up. I did also request that he do physical >therapy. I was a little disappointed with Jaiden feet after the >last cast. They still seemed to point downward more than I thought >they should. His feet was flexible and you could pull it up to 90 >degrees. He did cry initially when we flexed it up but now only >grunts like it hurts. We got his AFOs on yesterday. I just scared >that there is going to be a relaspe. I am anxious to hear back from >Dr. Ponseti. Any suggestions? > > >Nan >Jaiden 6.5 mos blcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Nan, This still sounds all wrong. Do you know who Dr. Frick talked to in Iowa? I can't imagine any of the docs there saying they aren't " sure " about the use of the FAB at night, it is a must for babies corrected with the Ponseti method. There are extenuating circumstances that might require the AFO in addition to the FAB but I can almost guarantee that there is some miscommunication going on here. We need to get to the bottom of this neurogenic cf thing, Dr. Frick needs to give you more of an explanation of why he thinks this. I just don't get this whole thing, Dr. Frick is a very competent Ponseti doc and this just sounds off. After the tenotomy cast comes off he should have achieved dorsiflexion of 10-15 degrees - if you push up on the bottom of his foot, palm flat on the sole, you should be able to push it up 10-15 degrees past " L " or neutral. As for the email to Dr. Ponseti, I'm inclined to think that a follow up email is in order - it seems likely that with as much time as has passed that somehow the email did not make it to him. Sorry I'm not much help Nan, I'm just a bit confused by the situation with your son's feet. HTH, > > Hi guys, > > Just wanted to give everyone a update. I emailed Dr. Ponseti about > Jaiden over a 1 1/2 ago, but I still haven't heard back from him. > Jaiden got his cast off and I spoke with his doctor about putting > him in AFO braces. He still maintains that he feels Jaiden would > benefit better with AFOs. I did ask about FAB at night. He said > that he had been in touch with MD from Iowa and they really aren't > sure if FABs are necessary to wear at night or not, but he did not > think Jaiden's had much of a problem with abduction. Since he still > maintains that he feels that Jaiden had neurogenic cf I did request > that Jaiden a pediatric neurologist and they are suppose to be > setting that appointment up. I did also request that he do physical > therapy. I was a little disappointed with Jaiden feet after the > last cast. They still seemed to point downward more than I thought > they should. His feet was flexible and you could pull it up to 90 > degrees. He did cry initially when we flexed it up but now only > grunts like it hurts. We got his AFOs on yesterday. I just scared > that there is going to be a relaspe. I am anxious to hear back from > Dr. Ponseti. Any suggestions? > > > Nan > Jaiden 6.5 mos blcf > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 (MD in Iowa) is not the man to be asking if a baby needs a FAB at night or not!!! He builds the shoe but he is NOT a doctor who can give this sort of advice to wear or not to wear and your doctor should know that. MD " isn't sure " becasue MD doesn't know the answer!!! Duh?! I'm vry leery of all this too. CALL Dr. Ponseti. Speak to him directly about the situation. ee Mother of 3 Clubfooted Sons: - Bilateral Club Feet April 1998 Everett - Bilateral Club Feet September 2003 Garrison - Bilateral Club Feet March 2006 Visit us on the Web! www.WildlifeRevivalTaxidermy.com Update on Jaiden >Date: Sun, 16 Jul 2006 01:35:06 -0000 > >Hi guys, > >Just wanted to give everyone a update. I emailed Dr. Ponseti about >Jaiden over a 1 1/2 ago, but I still haven't heard back from him. >Jaiden got his cast off and I spoke with his doctor about putting >him in AFO braces. He still maintains that he feels Jaiden would >benefit better with AFOs. I did ask about FAB at night. He said >that he had been in touch with MD from Iowa and they really aren't >sure if FABs are necessary to wear at night or not, but he did not >think Jaiden's had much of a problem with abduction. Since he still >maintains that he feels that Jaiden had neurogenic cf I did request >that Jaiden a pediatric neurologist and they are suppose to be >setting that appointment up. I did also request that he do physical >therapy. I was a little disappointed with Jaiden feet after the >last cast. They still seemed to point downward more than I thought >they should. His feet was flexible and you could pull it up to 90 >degrees. He did cry initially when we flexed it up but now only >grunts like it hurts. We got his AFOs on yesterday. I just scared >that there is going to be a relaspe. I am anxious to hear back from >Dr. Ponseti. Any suggestions? > > >Nan >Jaiden 6.5 mos blcf > > > ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.10.0/388 - Release Date: 7/13/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Try emailing him again. I think that is pretty unlike him to not respond to your email. Maybe it gost lost in the shuffel?I've emailed him a few times and he has gotten right back to me. Dino-8 mos. atypical/complex BCF Update on Jaiden Hi guys, Just wanted to give everyone a update. I emailed Dr. Ponseti about Jaiden over a 1 1/2 ago, but I still haven't heard back from him. Jaiden got his cast off and I spoke with his doctor about putting him in AFO braces. He still maintains that he feels Jaiden would benefit better with AFOs. I did ask about FAB at night. He said that he had been in touch with MD from Iowa and they really aren't sure if FABs are necessary to wear at night or not, but he did not think Jaiden's had much of a problem with abduction. Since he still maintains that he feels that Jaiden had neurogenic cf I did request that Jaiden a pediatric neurologist and they are suppose to be setting that appointment up. I did also request that he do physical therapy. I was a little disappointed with Jaiden feet after the last cast. They still seemed to point downward more than I thought they should. His feet was flexible and you could pull it up to 90 degrees. He did cry initially when we flexed it up but now only grunts like it hurts. We got his AFOs on yesterday. I just scared that there is going to be a relaspe. I am anxious to hear back from Dr. Ponseti. Any suggestions? Nan Jaiden 6.5 mos blcf Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.