Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 (and everyone), It is very frustrating to many of us that even doctors on the " qualified physicians list " aren't necessarily following the protocol as it was developed by Dr. P. It is impossible for the U of Iowa staff to " police " every doctor who claims to be using the method, so once a doctor submits paperwork to Iowa showing that they're having initial success with the method and they're placed on the list- that's it...after that, they're not monitored (only because it's impossible, not because Dr. P doesn't want to). And there are many doctors who *are* following protocol exactly, who have not submitted the paperwork to Iowa to be listed on the website either. All you can do is arm yourself with information based on your own personal research, and use that information and your own gut instincts to make decisions (with or without your physician) about your child's treatment. Always keep in mind that you can and should seek second or third opinions from other doctors if something doesn't seem quite right to you- and always feel free to bounce things off of our group here. Just remember that the responses you receive here are well-intentioned, based on the limited information that each of us share about our children's situations- meant to help give you different perspectives and ideas to think about. We all know that everyone's situation is different; and we all have to be aware that as a community we share information to be helpful, so others can take whatever bits and pieces of the families' experiences/stories and apply it to their own situations as needed. I am of the opinion that you can't have enough information, and opinions based on personal experiences are often useful pieces of information- you can take it or leave it! About Dr. King, I believe that some families have had good experiences with him, though I don't agree with his suggestion to leave the FAB on 23/7 until Kody walks (this is a common change in the bracing protocol that I really don't understand). Hopefully some of the other CA families will chime in on their experiences with Dr. King and others in that region. I'm glad you're here- and I share in your frustration- hopefully our community will help you get through this! Hugs! & (3-16-00) left cf > > > haven't posted anything in a while: stomach flu, flu etc... > > > > > > everytime > > > we take of Kody's cast the leg looks really swollen. Especially > the > > > foot. Last time we were there the Dr. took an X-Ray and the > bones > > > look already very well aligned. He is saying that the swelling > is > > > normal. Did anybody experience the same thing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 I am replying because we too are currently seeing Dr. King in Tarzana. We went to Dr. Ponseti for the initial correction and then began follow up with Dr. King. When Becky had a small relapse at 10 1/2 mos Dr. King kept insisting that Becky needed the reverse last shoes. But I knew from all of the reading I have done on the Ponseti Method, that is not what she needed. So I took photos and sent them to Dr. P and he said that she needed 2-3 more casts. Needless to say we made the trip back to Iowa for the correction of the relapse. When we got back we had changed insurance, and began follow up with Dr. Early at childrens hospital LA. I was really happy with the treatment we were getting there but all of a sudden we were informed that Dr. Early was no longer going to be working at CHLA.... so back to square one trying to find someone locally to monitor Becky's progress.... so we were back to Dr. King. Not really my first choice, but that is who the insurance would cover. In my heart I am trusting that he is a Dr. and he knows what he is doing and what to look for when he sees her feet, but I am still a bit worried. I don't feel that he follows the Ponseti Method to a T, but like said Dr. P can't police everyone on the list to make sure they are doing things correctly. I would say just trust your gut and do what you think is right for your little one. You will not regret for one minute if you decide to make that long trip to IA. It is well worth it. We have a check up with Dr. King on Friday the 2nd of July, and I am going to go from there with my situation. I have a feeling that Becky is going through a relapse..... just my gut talking. My husband and I have even talked about moving to Iowa City just so that we are near a Doctor I trust for her feet. I don't know if I answered anything LOL Just wanted you to know that you aren't the only one that has noticed Dr. King isn't following the Ponseti method all the way. ((((((HUGS)))))) and Becky 11/12/01 bilateral clubfoot corrected by Dr. Ponseti > > > > haven't posted anything in a while: stomach flu, flu etc... > > > > > > > > everytime > > > > we take of Kody's cast the leg looks really swollen. Especially > > the > > > > foot. Last time we were there the Dr. took an X-Ray and the > > bones > > > > look already very well aligned. He is saying that the swelling > > is > > > > normal. Did anybody experience the same thing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Just a second thought about getting a second opinion- Dr. Colburn is a lot closer than Iowa City, and he is the most experienced Ponseti doctor on the west coast. He follows Dr. P's protocol exactly, and has many years and lots of " feet " under his belt. Other things to consider for any family who is considering traveling to Iowa City- if you have family in different regions of the U.S. (or other countries as well) where it might be more convenient to travel for you- there may be highly recommended doctors in that area (i.e. Dr. Dobbs in St. Louis, Dr. Herzenberg in Baltimore, various docs in the NYC area etc.) Just ask about any particular region and hopefully our group can come up with some doctors nearby that we have confidence in their success in treatment and dedication to their patients based on our involvement with the Ponseti internet community over the past few years. Daiga is a great example of this situation, where she traveled all the way across Canada to have Owen treated by Dr. Pirani, though there were " closer " Ponseti doctors, I believe she stayed with family on the west coast. Just some rambling thoughts... > > > > > haven't posted anything in a while: stomach flu, flu etc... > > > > > > > > > > everytime > > > > > we take of Kody's cast the leg looks really swollen. > Especially > > > the > > > > > foot. Last time we were there the Dr. took an X-Ray and the > > > bones > > > > > look already very well aligned. He is saying that the > swelling > > > is > > > > > normal. Did anybody experience the same thing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 I agree with , that is the exact reason we went to Iowa. My brother in law actually works at the university hospitals, and my mother in law lives about 2 hours south, so it was a logical choice for us. Our new insurance only covers doctors in California so I am going to check out Dr. Colburn if things fall through with Dr. King. Thanks ! > > > > > > haven't posted anything in a while: stomach flu, flu etc... > > > > > > > > > > > > everytime > > > > > > we take of Kody's cast the leg looks really swollen. > > Especially > > > > the > > > > > > foot. Last time we were there the Dr. took an X-Ray and the > > > > bones > > > > > > look already very well aligned. He is saying that the > > swelling > > > > is > > > > > > normal. Did anybody experience the same thing? Quote Link to comment Share on other sites More sharing options...
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