Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 hi! i just wanted to thank everyone for all their suggestions and reassuring words regarding naomi and her difficulties sleeping with the longer bar! ... i appreciate it more than i can tell you and i hope that someday i can help someone who's just starting out in this journey. did you know that for seven months i couldn't find a support system to talk to? i've been reading different things from this site with tears in my eyes thinking 'why couldn't i have found this place sooner!?!' - we went through the problems of finding sleepers and modifying outfits, figuring out how to take the casts off, not being able to fit her in the carseat, nursing difficulties, naomi constantly slipping out of her boots, etc. all on our own since we didn't know who to ask (our doctor and orthotics dept tried to help, but since they never had to deal with these everyday problems, they were stumped a lot of the time!) thank you again! maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 On my way back from the symposium yesterday, I started thinking that perhaps it would be useful to put together a booklet specifically for parents about all the little things they may have to deal with and share the experience that we have amassed here on the internet. The booklets would be distributed to parents through doctors offices. It could be translated into different languages. I'm willing to coordinate the project but I would need to use the info. that's already been developed. I don't want to reinvent the wheel when there are already several great documents out there... As one doctor pointed out, the vast majority of parents do not have access to the internet. I had thought of this idea previously but dismissed it because I thought it was not necessary because of the information that could be gathered on the internet. Dr. Herzenberg had great things to say about his " internet patients " compared to those who come in off the street, especially if the internet patients had unsuccessful treatment elsewhere. However, other doctors reported that their internet parents were causing difficulties for them, especially in countries where the medical establishment is not open to the Ponseti method. To have parents telling doctors they're doing it wrong is just not helpful for the doctor who is trying to convince other doctors to adopt the method. There definitely seems to be a lot of cultural differences in regards to the way the method is accepted and carried out depending on the norms for that culture. One doctor showed an example of the Letter Doctor Ponseti sends to a doctor who is not complying with his method, and our second doctor who was attending the symposium, let out a big laugh. Since I'm non- confrontational by nature, I had said nothing to my doctor when she modified the method, but did let Dr. Ponseti know what modifications my doctor was making. I do think that parents can confront their doctors if they're comfortable doing that, but the doctor may not be responsive until they get the Letter from Dr. POnseti... It's like when you're brother or sister told you to stop doing something, you ignored their advice until your parent intervened.... Just some thoughts... off to a picnic... Best, Joanne W. mom to big Zoe (3-25-01, right clubfoot) > hi! > > i just wanted to thank everyone for all their suggestions and > reassuring words regarding naomi and her difficulties sleeping with > the longer bar! ... i appreciate it more than i can tell you and i > hope that someday i can help someone who's just starting out in this > journey. > > did you know that for seven months i couldn't find a support system to > talk to? i've been reading different things from this site with tears > in my eyes thinking 'why couldn't i have found this place sooner!?!' - > we went through the problems of finding sleepers and modifying > outfits, figuring out how to take the casts off, not being able to fit > her in the carseat, nursing difficulties, naomi constantly slipping > out of her boots, etc. all on our own since we didn't know who to ask > (our doctor and orthotics dept tried to help, but since they never had > to deal with these everyday problems, they were stumped a lot of the > time!) > > thank you again! > > maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Hi Everyone: I myself would like to thank everyone as well. I agree with Maureen in everything she stated. I myself have shed alot of tears in reading your stories and visiting your websites. I thank you one hundred times over. Because of your suggestions I decided to email Dr. Ponseti. In his response he feels Ava's R foot is Atypical and will not respond to the treatment given to her at Dupont being that they don't really follow the ponseti methond. I sure wish I had known about this group before starting her treatment down there. We are in the middle of planning a trip to see Dr. Ponseti. It's going to be rough but sure worth it! Thanks again for listening. KK Livi 01/03 Ava 05/04 BCF/R-AT/DDB 2weeks > hi! > > i just wanted to thank everyone for all their suggestions and > reassuring words regarding naomi and her difficulties sleeping with > the longer bar! ... i appreciate it more than i can tell you and i > hope that someday i can help someone who's just starting out in this > journey. > > did you know that for seven months i couldn't find a support system to > talk to? i've been reading different things from this site with tears > in my eyes thinking 'why couldn't i have found this place sooner!?!' - > we went through the problems of finding sleepers and modifying > outfits, figuring out how to take the casts off, not being able to fit > her in the carseat, nursing difficulties, naomi constantly slipping > out of her boots, etc. all on our own since we didn't know who to ask > (our doctor and orthotics dept tried to help, but since they never had > to deal with these everyday problems, they were stumped a lot of the > time!) > > thank you again! > > maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 I agree. We should all do our best to spread the word. Who cares if it is more difficult for non-Ponseti doctors? I have mentioned this website and the method to parents in waiting room to have them look at me with this puzzled look like " Huh???? What are you talking about?? " Of course the few minutes before being called back is not nearly enough time to explain anything to them... Sometimes, it's like we are trying to tell these people that the world is not flat and they just know we are going to fall off the edge of it! Freeman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 I just wanted to post an Angel Flights info sheet on the BB at our old physical therapy clinic and they told me no, they'd keep if and if anyone asked........ Well duh! How can you ask about something you don't know exists! s. Re: Re: many many many thanks! I agree. We should all do our best to spread the word. Who cares if it is more difficult for non-Ponseti doctors? I have mentioned this website and the method to parents in waiting room to have them look at me with this puzzled look like " Huh???? What are you talking about?? " Of course the few minutes before being called back is not nearly enough time to explain anything to them... Sometimes, it's like we are trying to tell these people that the world is not flat and they just know we are going to fall off the edge of it! Freeman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 I just wanted to post an Angel Flights info sheet on the BB at our old physical therapy clinic and they told me no, they'd keep if and if anyone asked........ Well duh! How can you ask about something you don't know exists! s. Re: Re: many many many thanks! I agree. We should all do our best to spread the word. Who cares if it is more difficult for non-Ponseti doctors? I have mentioned this website and the method to parents in waiting room to have them look at me with this puzzled look like " Huh???? What are you talking about?? " Of course the few minutes before being called back is not nearly enough time to explain anything to them... Sometimes, it's like we are trying to tell these people that the world is not flat and they just know we are going to fall off the edge of it! Freeman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 > On my way back from the symposium yesterday, I started thinking that > perhaps it would be useful to put together a booklet specifically for > parents about all the little things they may have to deal with and > share the experience that we have amassed here on the internet. The > booklets would be distributed to parents through doctors offices. It > could be translated into different languages. I'm willing to > coordinate the project but I would need to use the info. that's > already been developed. I don't want to reinvent the wheel when there > are already several great documents out there... This would be so great. Before I found this group and the Ponseti method the only thing I knew was what the orthopedist told me. I just assumed all orthopedists did the same thing with club feet. I had no idea there were different methods of treating club feet. My son would've gone through three extremely painful surgeries if I had not found Dr. Ponseti's website and this group. Since I found this group I wanted to give my pediatrician some information on the POnseti method along with a list of doctors who use it so they can give their other club foot patients more options. I wish I'd had this information from the beginning and saved myself and my son a lot of useless treatments. Instead of starting the POnseti method at ten months we could've started it right from the beginning. But I didn't know and I didn't do the research until we were scheduled for surgery. As I said before I just assumed the orthopedist knew what he was doing. Quote Link to comment Share on other sites More sharing options...
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