Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 I did see Dr. Weinert today and felt very comfortable with him. He answered all of our questions including all the ones from the list that this group said I should ask. He seemed very dedicated to Dr. Ponseti's non-surgical methods. He also said he had just been out in October to see Dr. Ponseti and he spoke highly of him. He also showed us models of the DBB he uses. I just want to reiterate that we were very happy with our interview with him and everything he told us about his treatment mirrored what is on Dr. Ponseti's website. I am a lawyer and I tend to get very particular in my questions but I felt very satisfied. Of course, one should make up one's own mind but again, so far I have had a positive experience with him. I am not due until August but will report then. Dessi Pickett DPickett@...> wrote: Incredible. Carl Weinert - the king of CHOC! He who rebelled against Dr. Ponseti's method for so long and as of 1.5 yrs had a 60% cut rate! He saw 's feet at the hospital and said that one of them had to get the surgery for sure. It is just hard to believe. I hope he is going to use Ponseti's method for real. Weinert was using the AFO not the DBB. WOW! If anybody goes to interview him, please let me know. I will try calling his office. Last time I called they refused to release any info to me. Dessi Re: Re: Question Dear , We are in Orange County, too. I had the dilemma about where to go, too. I wrote to Dr. Ponseti and he answered me soon after regarding doctors in Orange County. Here is what he said, I am sure this will be a big help to you and may help you avoid a trip to Tarzana since he recommends a doctor here in Orange County. Here is the actual text of his email: Dear Mrs. Hewitt: Before a physician is added to my web site, I request that he send me the photos of the feet of three babies he has treated showing the feet before treatment was started and after it was complete, etc. In today's mail I received this information from two California physicians: Dr. Carl Weinert, Jr., 1310 West Dr., Suite 508, Orange, California phone 714 633-2111 and Dr. Lerman, Shriners Hospital, 2425 Stockton Blvd., Sacramento CA 95817 phone 916 453-2049 The photos submitted by each of these physicians show excellent results and their names will be added to our web site. If I can be of further service or answer questions for you at any time, don't hesitate to be in touch. I.V. Ponseti, M.D. (Joyce Roller, secretary) claugauga claugauga@...> wrote: Hi , thanks for replying. We live in Santa Ana (Orange County). Hall send me the link to the California available Doctors and there are only two who we could choose from. Since you are telling me that Dr. King is doing a good job we will try him. I will read the protocol again and hopefully the treatment is going to be as good as in Iowa. How old is now? And how long was the treatment with the cast for her? Thank you so much for replying!!! and Kody > > Our son Kody was born Feb 1st 2004 with a clubfoot. > > The doctors went right away ahead and put his leg > > in a cast. Now after 2 1/2 month we are not really > > happy with the treatment anymore and they already mentioned > > that he might need surgery. Today I read about the > > Ponseti method and I got very interested. > > My question is: Are there any doctors in Southern > > California who know how to apply that method > > correctly or do we have to contact the University > > in Iowa to do it the treatment over there. > > I would be very happy if somebody could give me an > > answer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 I did see Dr. Weinert today and felt very comfortable with him. He answered all of our questions including all the ones from the list that this group said I should ask. He seemed very dedicated to Dr. Ponseti's non-surgical methods. He also said he had just been out in October to see Dr. Ponseti and he spoke highly of him. He also showed us models of the DBB he uses. I just want to reiterate that we were very happy with our interview with him and everything he told us about his treatment mirrored what is on Dr. Ponseti's website. I am a lawyer and I tend to get very particular in my questions but I felt very satisfied. Of course, one should make up one's own mind but again, so far I have had a positive experience with him. I am not due until August but will report then. Dessi Pickett DPickett@...> wrote: Incredible. Carl Weinert - the king of CHOC! He who rebelled against Dr. Ponseti's method for so long and as of 1.5 yrs had a 60% cut rate! He saw 's feet at the hospital and said that one of them had to get the surgery for sure. It is just hard to believe. I hope he is going to use Ponseti's method for real. Weinert was using the AFO not the DBB. WOW! If anybody goes to interview him, please let me know. I will try calling his office. Last time I called they refused to release any info to me. Dessi Re: Re: Question Dear , We are in Orange County, too. I had the dilemma about where to go, too. I wrote to Dr. Ponseti and he answered me soon after regarding doctors in Orange County. Here is what he said, I am sure this will be a big help to you and may help you avoid a trip to Tarzana since he recommends a doctor here in Orange County. Here is the actual text of his email: Dear Mrs. Hewitt: Before a physician is added to my web site, I request that he send me the photos of the feet of three babies he has treated showing the feet before treatment was started and after it was complete, etc. In today's mail I received this information from two California physicians: Dr. Carl Weinert, Jr., 1310 West Dr., Suite 508, Orange, California phone 714 633-2111 and Dr. Lerman, Shriners Hospital, 2425 Stockton Blvd., Sacramento CA 95817 phone 916 453-2049 The photos submitted by each of these physicians show excellent results and their names will be added to our web site. If I can be of further service or answer questions for you at any time, don't hesitate to be in touch. I.V. Ponseti, M.D. (Joyce Roller, secretary) claugauga claugauga@...> wrote: Hi , thanks for replying. We live in Santa Ana (Orange County). Hall send me the link to the California available Doctors and there are only two who we could choose from. Since you are telling me that Dr. King is doing a good job we will try him. I will read the protocol again and hopefully the treatment is going to be as good as in Iowa. How old is now? And how long was the treatment with the cast for her? Thank you so much for replying!!! and Kody > > Our son Kody was born Feb 1st 2004 with a clubfoot. > > The doctors went right away ahead and put his leg > > in a cast. Now after 2 1/2 month we are not really > > happy with the treatment anymore and they already mentioned > > that he might need surgery. Today I read about the > > Ponseti method and I got very interested. > > My question is: Are there any doctors in Southern > > California who know how to apply that method > > correctly or do we have to contact the University > > in Iowa to do it the treatment over there. > > I would be very happy if somebody could give me an > > answer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 What do you mean models of the DBB? I just spoke with his office and was told that he uses AFOs mainly. Interesting, I was told that the method used will still depend on the child. Very confusing. St. ph pediatricians will speak with him next week. Dessi Re: Re: Question Dear , We are in Orange County, too. I had the dilemma about where to go, too. I wrote to Dr. Ponseti and he answered me soon after regarding doctors in Orange County. Here is what he said, I am sure this will be a big help to you and may help you avoid a trip to Tarzana since he recommends a doctor here in Orange County. Here is the actual text of his email: Dear Mrs. Hewitt: Before a physician is added to my web site, I request that he send me the photos of the feet of three babies he has treated showing the feet before treatment was started and after it was complete, etc. In today's mail I received this information from two California physicians: Dr. Carl Weinert, Jr., 1310 West Dr., Suite 508, Orange, California phone 714 633-2111 and Dr. Lerman, Shriners Hospital, 2425 Stockton Blvd., Sacramento CA 95817 phone 916 453-2049 The photos submitted by each of these physicians show excellent results and their names will be added to our web site. If I can be of further service or answer questions for you at any time, don't hesitate to be in touch. I.V. Ponseti, M.D. (Joyce Roller, secretary) claugauga claugauga@...> wrote: Hi , thanks for replying. We live in Santa Ana (Orange County). Hall send me the link to the California available Doctors and there are only two who we could choose from. Since you are telling me that Dr. King is doing a good job we will try him. I will read the protocol again and hopefully the treatment is going to be as good as in Iowa. How old is now? And how long was the treatment with the cast for her? Thank you so much for replying!!! and Kody > > Our son Kody was born Feb 1st 2004 with a clubfoot. > > The doctors went right away ahead and put his leg > > in a cast. Now after 2 1/2 month we are not really > > happy with the treatment anymore and they already mentioned > > that he might need surgery. Today I read about the > > Ponseti method and I got very interested. > > My question is: Are there any doctors in Southern > > California who know how to apply that method > > correctly or do we have to contact the University > > in Iowa to do it the treatment over there. > > I would be very happy if somebody could give me an > > answer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 What do you mean models of the DBB? I just spoke with his office and was told that he uses AFOs mainly. Interesting, I was told that the method used will still depend on the child. Very confusing. St. ph pediatricians will speak with him next week. Dessi Re: Re: Question Dear , We are in Orange County, too. I had the dilemma about where to go, too. I wrote to Dr. Ponseti and he answered me soon after regarding doctors in Orange County. Here is what he said, I am sure this will be a big help to you and may help you avoid a trip to Tarzana since he recommends a doctor here in Orange County. Here is the actual text of his email: Dear Mrs. Hewitt: Before a physician is added to my web site, I request that he send me the photos of the feet of three babies he has treated showing the feet before treatment was started and after it was complete, etc. In today's mail I received this information from two California physicians: Dr. Carl Weinert, Jr., 1310 West Dr., Suite 508, Orange, California phone 714 633-2111 and Dr. Lerman, Shriners Hospital, 2425 Stockton Blvd., Sacramento CA 95817 phone 916 453-2049 The photos submitted by each of these physicians show excellent results and their names will be added to our web site. If I can be of further service or answer questions for you at any time, don't hesitate to be in touch. I.V. Ponseti, M.D. (Joyce Roller, secretary) claugauga claugauga@...> wrote: Hi , thanks for replying. We live in Santa Ana (Orange County). Hall send me the link to the California available Doctors and there are only two who we could choose from. Since you are telling me that Dr. King is doing a good job we will try him. I will read the protocol again and hopefully the treatment is going to be as good as in Iowa. How old is now? And how long was the treatment with the cast for her? Thank you so much for replying!!! and Kody > > Our son Kody was born Feb 1st 2004 with a clubfoot. > > The doctors went right away ahead and put his leg > > in a cast. Now after 2 1/2 month we are not really > > happy with the treatment anymore and they already mentioned > > that he might need surgery. Today I read about the > > Ponseti method and I got very interested. > > My question is: Are there any doctors in Southern > > California who know how to apply that method > > correctly or do we have to contact the University > > in Iowa to do it the treatment over there. > > I would be very happy if somebody could give me an > > answer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 What do you mean models of the DBB? I just spoke with his office and was told that he uses AFOs mainly. Interesting, I was told that the method used will still depend on the child. Very confusing. St. ph pediatricians will speak with him next week. Dessi Re: Re: Question Dear , We are in Orange County, too. I had the dilemma about where to go, too. I wrote to Dr. Ponseti and he answered me soon after regarding doctors in Orange County. Here is what he said, I am sure this will be a big help to you and may help you avoid a trip to Tarzana since he recommends a doctor here in Orange County. Here is the actual text of his email: Dear Mrs. Hewitt: Before a physician is added to my web site, I request that he send me the photos of the feet of three babies he has treated showing the feet before treatment was started and after it was complete, etc. In today's mail I received this information from two California physicians: Dr. Carl Weinert, Jr., 1310 West Dr., Suite 508, Orange, California phone 714 633-2111 and Dr. Lerman, Shriners Hospital, 2425 Stockton Blvd., Sacramento CA 95817 phone 916 453-2049 The photos submitted by each of these physicians show excellent results and their names will be added to our web site. If I can be of further service or answer questions for you at any time, don't hesitate to be in touch. I.V. Ponseti, M.D. (Joyce Roller, secretary) claugauga claugauga@...> wrote: Hi , thanks for replying. We live in Santa Ana (Orange County). Hall send me the link to the California available Doctors and there are only two who we could choose from. Since you are telling me that Dr. King is doing a good job we will try him. I will read the protocol again and hopefully the treatment is going to be as good as in Iowa. How old is now? And how long was the treatment with the cast for her? Thank you so much for replying!!! and Kody > > Our son Kody was born Feb 1st 2004 with a clubfoot. > > The doctors went right away ahead and put his leg > > in a cast. Now after 2 1/2 month we are not really > > happy with the treatment anymore and they already mentioned > > that he might need surgery. Today I read about the > > Ponseti method and I got very interested. > > My question is: Are there any doctors in Southern > > California who know how to apply that method > > correctly or do we have to contact the University > > in Iowa to do it the treatment over there. > > I would be very happy if somebody could give me an > > answer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 - I see from another post you are going to give Dr. King a try. Should he not be a match for you for any reason please contact me about other Southern California doctors. We've saw Dr. Mubarak in San Diego for castings and tenonomy and currently drive north to see Dr. Colburn in Pleasanton for follow up treatment. I can be reached directly at hwray98@.... > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Question >Date: Tue, 13 Apr 2004 23:37:01 -0000 > >Our son Kody was born Feb 1st 2004 with a clubfoot. >The doctors went right away ahead and put his leg >in a cast. Now after 2 1/2 month we are not really >happy with the treatment anymore and they already mentioned >that he might need surgery. Today I read about the >Ponseti method and I got very interested. >My question is: Are there any doctors in Southern >California who know how to apply that method >correctly or do we have to contact the University >in Iowa to do it the treatment over there. >I would be very happy if somebody could give me an >answer. > > _________________________________________________________________ From must-see cities to the best beaches, plan a getaway with the Spring Travel Guide! http://special.msn.com/local/springtravel.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 - I see from another post you are going to give Dr. King a try. Should he not be a match for you for any reason please contact me about other Southern California doctors. We've saw Dr. Mubarak in San Diego for castings and tenonomy and currently drive north to see Dr. Colburn in Pleasanton for follow up treatment. I can be reached directly at hwray98@.... > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Question >Date: Tue, 13 Apr 2004 23:37:01 -0000 > >Our son Kody was born Feb 1st 2004 with a clubfoot. >The doctors went right away ahead and put his leg >in a cast. Now after 2 1/2 month we are not really >happy with the treatment anymore and they already mentioned >that he might need surgery. Today I read about the >Ponseti method and I got very interested. >My question is: Are there any doctors in Southern >California who know how to apply that method >correctly or do we have to contact the University >in Iowa to do it the treatment over there. >I would be very happy if somebody could give me an >answer. > > _________________________________________________________________ From must-see cities to the best beaches, plan a getaway with the Spring Travel Guide! http://special.msn.com/local/springtravel.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 - I see from another post you are going to give Dr. King a try. Should he not be a match for you for any reason please contact me about other Southern California doctors. We've saw Dr. Mubarak in San Diego for castings and tenonomy and currently drive north to see Dr. Colburn in Pleasanton for follow up treatment. I can be reached directly at hwray98@.... > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Question >Date: Tue, 13 Apr 2004 23:37:01 -0000 > >Our son Kody was born Feb 1st 2004 with a clubfoot. >The doctors went right away ahead and put his leg >in a cast. Now after 2 1/2 month we are not really >happy with the treatment anymore and they already mentioned >that he might need surgery. Today I read about the >Ponseti method and I got very interested. >My question is: Are there any doctors in Southern >California who know how to apply that method >correctly or do we have to contact the University >in Iowa to do it the treatment over there. >I would be very happy if somebody could give me an >answer. > > _________________________________________________________________ From must-see cities to the best beaches, plan a getaway with the Spring Travel Guide! http://special.msn.com/local/springtravel.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Hm, thanks for the update Dessi. When I say the DBBs, I mean he showed us the shoes attached to the bar, not AFOs. That is really interesting. Thanks again, we will also follow up. Take care. Dessi Pickett DPickett@...> wrote: What do you mean models of the DBB? I just spoke with his office and was told that he uses AFOs mainly. Interesting, I was told that the method used will still depend on the child. Very confusing. St. ph pediatricians will speak with him next week. Dessi Re: Re: Question Dear , We are in Orange County, too. I had the dilemma about where to go, too. I wrote to Dr. Ponseti and he answered me soon after regarding doctors in Orange County. Here is what he said, I am sure this will be a big help to you and may help you avoid a trip to Tarzana since he recommends a doctor here in Orange County. Here is the actual text of his email: Dear Mrs. Hewitt: Before a physician is added to my web site, I request that he send me the photos of the feet of three babies he has treated showing the feet before treatment was started and after it was complete, etc. In today's mail I received this information from two California physicians: Dr. Carl Weinert, Jr., 1310 West Dr., Suite 508, Orange, California phone 714 633-2111 and Dr. Lerman, Shriners Hospital, 2425 Stockton Blvd., Sacramento CA 95817 phone 916 453-2049 The photos submitted by each of these physicians show excellent results and their names will be added to our web site. If I can be of further service or answer questions for you at any time, don't hesitate to be in touch. I.V. Ponseti, M.D. (Joyce Roller, secretary) claugauga claugauga@...> wrote: Hi , thanks for replying. We live in Santa Ana (Orange County). Hall send me the link to the California available Doctors and there are only two who we could choose from. Since you are telling me that Dr. King is doing a good job we will try him. I will read the protocol again and hopefully the treatment is going to be as good as in Iowa. How old is now? And how long was the treatment with the cast for her? Thank you so much for replying!!! and Kody > > Our son Kody was born Feb 1st 2004 with a clubfoot. > > The doctors went right away ahead and put his leg > > in a cast. Now after 2 1/2 month we are not really > > happy with the treatment anymore and they already mentioned > > that he might need surgery. Today I read about the > > Ponseti method and I got very interested. > > My question is: Are there any doctors in Southern > > California who know how to apply that method > > correctly or do we have to contact the University > > in Iowa to do it the treatment over there. > > I would be very happy if somebody could give me an > > answer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Hm, thanks for the update Dessi. When I say the DBBs, I mean he showed us the shoes attached to the bar, not AFOs. That is really interesting. Thanks again, we will also follow up. Take care. Dessi Pickett DPickett@...> wrote: What do you mean models of the DBB? I just spoke with his office and was told that he uses AFOs mainly. Interesting, I was told that the method used will still depend on the child. Very confusing. St. ph pediatricians will speak with him next week. Dessi Re: Re: Question Dear , We are in Orange County, too. I had the dilemma about where to go, too. I wrote to Dr. Ponseti and he answered me soon after regarding doctors in Orange County. Here is what he said, I am sure this will be a big help to you and may help you avoid a trip to Tarzana since he recommends a doctor here in Orange County. Here is the actual text of his email: Dear Mrs. Hewitt: Before a physician is added to my web site, I request that he send me the photos of the feet of three babies he has treated showing the feet before treatment was started and after it was complete, etc. In today's mail I received this information from two California physicians: Dr. Carl Weinert, Jr., 1310 West Dr., Suite 508, Orange, California phone 714 633-2111 and Dr. Lerman, Shriners Hospital, 2425 Stockton Blvd., Sacramento CA 95817 phone 916 453-2049 The photos submitted by each of these physicians show excellent results and their names will be added to our web site. If I can be of further service or answer questions for you at any time, don't hesitate to be in touch. I.V. Ponseti, M.D. (Joyce Roller, secretary) claugauga claugauga@...> wrote: Hi , thanks for replying. We live in Santa Ana (Orange County). Hall send me the link to the California available Doctors and there are only two who we could choose from. Since you are telling me that Dr. King is doing a good job we will try him. I will read the protocol again and hopefully the treatment is going to be as good as in Iowa. How old is now? And how long was the treatment with the cast for her? Thank you so much for replying!!! and Kody > > Our son Kody was born Feb 1st 2004 with a clubfoot. > > The doctors went right away ahead and put his leg > > in a cast. Now after 2 1/2 month we are not really > > happy with the treatment anymore and they already mentioned > > that he might need surgery. Today I read about the > > Ponseti method and I got very interested. > > My question is: Are there any doctors in Southern > > California who know how to apply that method > > correctly or do we have to contact the University > > in Iowa to do it the treatment over there. > > I would be very happy if somebody could give me an > > answer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Hm, thanks for the update Dessi. When I say the DBBs, I mean he showed us the shoes attached to the bar, not AFOs. That is really interesting. Thanks again, we will also follow up. Take care. Dessi Pickett DPickett@...> wrote: What do you mean models of the DBB? I just spoke with his office and was told that he uses AFOs mainly. Interesting, I was told that the method used will still depend on the child. Very confusing. St. ph pediatricians will speak with him next week. Dessi Re: Re: Question Dear , We are in Orange County, too. I had the dilemma about where to go, too. I wrote to Dr. Ponseti and he answered me soon after regarding doctors in Orange County. Here is what he said, I am sure this will be a big help to you and may help you avoid a trip to Tarzana since he recommends a doctor here in Orange County. Here is the actual text of his email: Dear Mrs. Hewitt: Before a physician is added to my web site, I request that he send me the photos of the feet of three babies he has treated showing the feet before treatment was started and after it was complete, etc. In today's mail I received this information from two California physicians: Dr. Carl Weinert, Jr., 1310 West Dr., Suite 508, Orange, California phone 714 633-2111 and Dr. Lerman, Shriners Hospital, 2425 Stockton Blvd., Sacramento CA 95817 phone 916 453-2049 The photos submitted by each of these physicians show excellent results and their names will be added to our web site. If I can be of further service or answer questions for you at any time, don't hesitate to be in touch. I.V. Ponseti, M.D. (Joyce Roller, secretary) claugauga claugauga@...> wrote: Hi , thanks for replying. We live in Santa Ana (Orange County). Hall send me the link to the California available Doctors and there are only two who we could choose from. Since you are telling me that Dr. King is doing a good job we will try him. I will read the protocol again and hopefully the treatment is going to be as good as in Iowa. How old is now? And how long was the treatment with the cast for her? Thank you so much for replying!!! and Kody > > Our son Kody was born Feb 1st 2004 with a clubfoot. > > The doctors went right away ahead and put his leg > > in a cast. Now after 2 1/2 month we are not really > > happy with the treatment anymore and they already mentioned > > that he might need surgery. Today I read about the > > Ponseti method and I got very interested. > > My question is: Are there any doctors in Southern > > California who know how to apply that method > > correctly or do we have to contact the University > > in Iowa to do it the treatment over there. > > I would be very happy if somebody could give me an > > answer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Hi Ruth, I can totally relate to you. My husband is a truck driver and for the past 9 yrs I have only had him on on weekends and sometimes during the weekdays - but I got use to it. This past August he was in a nasty rollover that almost took his life and have had him home daily since then up until this week when he went back to work. I had come to depend on him so much, just the fact of knowing he was in the house was a relief so these next few weeks will be an adjusting period for both of us. To answer you question - yes SOME antibiotics can make your lupus flare, but the thing to remember is NO 2 LUPUS PATIENTS ARE ALIKE - so say zithromax made me have a lupus flare, does not mean it would make you have a lupus flare. I do know that lupus patients must AVOID sulfa. If you go to our dear 's website I believe she has a section there that may be helpful for you. That site is http://www.itzarion.com/lupusgroup.html make sure to check it out, it is very informative and such. I wish you much luck tomorrow with your daughter's meet and I hope she can perform. Just make sure you douse yourself with sunscreen, and wear a hat. Hopefully others will be helpful to you with your question, I hope I was able to help somewhat. Well I will let you go, please take it easy and try to get some rest. Huggles, Deanna > Well tonight is gonna be a night of little or no sleep. If my hubby were home instead of on a fishing trip I would take something stronger for the pain and would probably sleep sound. He will be gone until Sunday evening. I usually only sleep in bits and pieces while he is gone. The last 4 to 5 years I have come to depend on him so much. Not so much for helping with things but just to be here for me. > > But he is gone and I have an 11 year old in the house so I get to play on the computer. > > From reading some posts do I understand right that taking antibiotics can cause a flare up of lupus? > > I have stayed away form the sun for years except when I had no choice. Tomorrow is gonna be a no choice day. My darling youngest has a track meet. Well, that is if her asthma will let her. We have had winds and dust along wtih all the pollens and the asthma is trying really hard this week to kick her butt. > > Bad thing is I work tomorrow night and Saturday. It is gonna take me the next 4 days to recoop so I can work again. > > I better go I am starting to ramble. > > Hey thanks a lot. > > Ruth in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Hi Ruth, I can totally relate to you. My husband is a truck driver and for the past 9 yrs I have only had him on on weekends and sometimes during the weekdays - but I got use to it. This past August he was in a nasty rollover that almost took his life and have had him home daily since then up until this week when he went back to work. I had come to depend on him so much, just the fact of knowing he was in the house was a relief so these next few weeks will be an adjusting period for both of us. To answer you question - yes SOME antibiotics can make your lupus flare, but the thing to remember is NO 2 LUPUS PATIENTS ARE ALIKE - so say zithromax made me have a lupus flare, does not mean it would make you have a lupus flare. I do know that lupus patients must AVOID sulfa. If you go to our dear 's website I believe she has a section there that may be helpful for you. That site is http://www.itzarion.com/lupusgroup.html make sure to check it out, it is very informative and such. I wish you much luck tomorrow with your daughter's meet and I hope she can perform. Just make sure you douse yourself with sunscreen, and wear a hat. Hopefully others will be helpful to you with your question, I hope I was able to help somewhat. Well I will let you go, please take it easy and try to get some rest. Huggles, Deanna > Well tonight is gonna be a night of little or no sleep. If my hubby were home instead of on a fishing trip I would take something stronger for the pain and would probably sleep sound. He will be gone until Sunday evening. I usually only sleep in bits and pieces while he is gone. The last 4 to 5 years I have come to depend on him so much. Not so much for helping with things but just to be here for me. > > But he is gone and I have an 11 year old in the house so I get to play on the computer. > > From reading some posts do I understand right that taking antibiotics can cause a flare up of lupus? > > I have stayed away form the sun for years except when I had no choice. Tomorrow is gonna be a no choice day. My darling youngest has a track meet. Well, that is if her asthma will let her. We have had winds and dust along wtih all the pollens and the asthma is trying really hard this week to kick her butt. > > Bad thing is I work tomorrow night and Saturday. It is gonna take me the next 4 days to recoop so I can work again. > > I better go I am starting to ramble. > > Hey thanks a lot. > > Ruth in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Avoiding sulfa and sulfonamides is no problem for me. When I take sulfonamides like Bextra, Celebrez, Indocin, etc. I get really sick so on my charts say no sulfonamides. Then Dr. decided to mark it no SULFA. As far as I can tell I have never taken SULFA in my life. If this is Lupus then maybe the reaction to the sulfanomides was part of it. Most of this started happening big time about 4 years ago. I was injured at work and ha 5 major surgical repairs in one year. A bit much. I almost went bonkers with it. At one point I just literally sat and bawled in my Dr.s office and told him I can;t do this. He was such a sweetie. He says yes we can. He gave me some meds teh next year that got me through some bad stuff. I might try and work on my cookbook now. I put one together a few years back as Christmas present for my family. I am currently writing two different book. I am writing one book on Once a Month Coooking and I am writing another one on being a servant to others through cooking. The last one is about a hostess ministry through churches. Take care, Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Hi (cool name!), Just my experience. My 's first doc also did the remove the cast the night before and now we are seeing Dr. Herzenberg in Baltimore because her foot was not fully corrected. She even needed a second tenotomy. And I followed the rules the doc set with the DBB and everything. Problem was that the doc wasn't truely using the Ponseti method. Multiple deviations. Because of what I've gone through with , the cast removal would be a BIG red flag. You may want a second opinion. Emailing Dr Ponseti or Dr. Herzenberg may be a good idea. Dr. Ponseti (319)356-3469 ignacio-ponseti@... Dr Herzenberg JHERZENBERG@... Hope that helps! Marilouise 9/9/03, LCF, 3 week cast after 2nd tenotomy (2 days left!!) Owen and 3/20/99 > Hello everyone. I've just been looking at Dr. Ponseti's site & what > I've found is most of the kids seem to have had around 5 casts. My > daughter is on her 5th casting and her foot still isn't quite > straight. It's starting to make me nervous. Also, her doctor wasn't > listed--actually, no docs were listed for PA. Is that not a complete > listing? Is anyone familiar with Dr. Realyvasquez at St. > Chris's in Philly? So am I just overly concerned or not? The > castings the doctor has done seem just like the pictures, with the > only exception being that her 3rd & 4th castings were pretty much > the same--we had a different doc (Dr. Realy on vacation) and he > couldn't get her foot to turn far enough. So really this 5th casting > is only in the 4th position. Also, we were told to remove her cast > the night before her appointment & on the website it says that's a > big " no-no " --not to remove cast until an hour before new cast. > Anyone have any experience with that? I know I'm rambling but I'm > just feeling a little concerned. I was a little stunned when she was > born and other than making sure we had a " good " doctor I haven't > been doing much research until this week and now I'm getting a > little worked up. We kind of fell into the Ponseti method by chance > (fortunately!) and I totally think it will work, but I just want to > make sure we're doing everything we can. (A little late now!) > Thanks for any help you can give me! > > mom of Guinevere 5/00 (no CF) > on 4/02 (no CF) > Ava 8/04 (right CF) > PS I'm also still trying to get down all your " lingo " and > abbreviations. Is there a dictionary anywhere? :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Hi , We're glad you posted. Welcome! It's great that you are doing research and informing yourself. A mother's instinct is almost always right.. if you have doubts about how treatment is going, don't ignore it and get the answers you need. I went through this myself.. a period of unease, wanting to believe we were on the right track, but questioning it. It took me 3 months before I finally accepted that we needed to make a change. I'm not saying that's the case for you.. but.. I can relate to your situation, as many others can here too. It can be tricky to know if your child is getting the true method. Here is a checklist of questions for parents and clues that it is being done with success. Typically 5 to 7 casts are needed. http://pages.ivillage.com/ponseti_links/id13.html Up till now I haven't heard of any docs in the Philly area doing the method.. that doesn't mean that they are not, but we have often heard of families in that area ending up going to see Dr. Herzenberg in Baltimore, after failed treatment elsewhere. You're fortunate you're near him; he's one of the very best. He'd be a great resource for you if you were to want another opinion. Here's a link to his website: http://www.lifebridgehealth.org/sinaibody.cfm?id=2360 I know the other parents here will answer you and provide much info.. this is a group with a wealth of info and many years of accumulated experience. We're glad you're a part of it! and Claire born 6/29/00 with unilateral left switched to Dr. Ponseti at 3 months old doing great > Hello everyone. I've just been looking at Dr. Ponseti's site & what > I've found is most of the kids seem to have had around 5 casts. My > daughter is on her 5th casting and her foot still isn't quite > straight. It's starting to make me nervous. Also, her doctor wasn't > listed--actually, no docs were listed for PA. Is that not a complete > listing? Is anyone familiar with Dr. Realyvasquez at St. > Chris's in Philly? So am I just overly concerned or not? The > castings the doctor has done seem just like the pictures, with the > only exception being that her 3rd & 4th castings were pretty much > the same--we had a different doc (Dr. Realy on vacation) and he > couldn't get her foot to turn far enough. So really this 5th casting > is only in the 4th position. Also, we were told to remove her cast > the night before her appointment & on the website it says that's a > big " no-no " --not to remove cast until an hour before new cast. > Anyone have any experience with that? I know I'm rambling but I'm > just feeling a little concerned. I was a little stunned when she was > born and other than making sure we had a " good " doctor I haven't > been doing much research until this week and now I'm getting a > little worked up. We kind of fell into the Ponseti method by chance > (fortunately!) and I totally think it will work, but I just want to > make sure we're doing everything we can. (A little late now!) > Thanks for any help you can give me! > > mom of Guinevere 5/00 (no CF) > on 4/02 (no CF) > Ava 8/04 (right CF) > PS I'm also still trying to get down all your " lingo " and > abbreviations. Is there a dictionary anywhere? :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hello ! You have reason to be concerned, but please also remember every childs case is different. If the cf is real severe, it can take more than 5 or 6 casts to make the correction. However, it never hurts to get a 2nd opinion especially if your doctor is not listed on Dr. Ponseti's site. It also doesn't necessarily mean your doctor is bad. And luckily, you are still in the very beginning stages so if you decide to go elsewhere, you have lost very little time. I have heard others from PA said they couldn't find a Ponseti trained doctor so they go to Dr. Herzenberg in Baltimore. Everyone on this board will give you a lot of help and insight. I left my 1st doctor when my daughter was 6 months. We had to start all over at that point. So try to do more research and like I said, 5 weeks in is still plenty early enough where too much time won't be lost if you choose another doctor. Good luck and keep us informed! & (3/2/04) bcf (4 casts, 2nd go-around) Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hello ! You have reason to be concerned, but please also remember every childs case is different. If the cf is real severe, it can take more than 5 or 6 casts to make the correction. However, it never hurts to get a 2nd opinion especially if your doctor is not listed on Dr. Ponseti's site. It also doesn't necessarily mean your doctor is bad. And luckily, you are still in the very beginning stages so if you decide to go elsewhere, you have lost very little time. I have heard others from PA said they couldn't find a Ponseti trained doctor so they go to Dr. Herzenberg in Baltimore. Everyone on this board will give you a lot of help and insight. I left my 1st doctor when my daughter was 6 months. We had to start all over at that point. So try to do more research and like I said, 5 weeks in is still plenty early enough where too much time won't be lost if you choose another doctor. Good luck and keep us informed! & (3/2/04) bcf (4 casts, 2nd go-around) Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hello ! You have reason to be concerned, but please also remember every childs case is different. If the cf is real severe, it can take more than 5 or 6 casts to make the correction. However, it never hurts to get a 2nd opinion especially if your doctor is not listed on Dr. Ponseti's site. It also doesn't necessarily mean your doctor is bad. And luckily, you are still in the very beginning stages so if you decide to go elsewhere, you have lost very little time. I have heard others from PA said they couldn't find a Ponseti trained doctor so they go to Dr. Herzenberg in Baltimore. Everyone on this board will give you a lot of help and insight. I left my 1st doctor when my daughter was 6 months. We had to start all over at that point. So try to do more research and like I said, 5 weeks in is still plenty early enough where too much time won't be lost if you choose another doctor. Good luck and keep us informed! & (3/2/04) bcf (4 casts, 2nd go-around) Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 , on the same schedule as Christian (4th cast, 2nd time around) with Dr. Herzenberg and we switched over to him when he was 6 months also. Is she going to have the tenotomy soon? Mommy to 12/17/98 and Christian 1/30/04 _____ From: susan.shook@... Sent: Monday, September 13, 2004 8:29 AM To: nosurgery4clubfoot Subject: Re: Question Hello ! You have reason to be concerned, but please also remember every childs case is different. If the cf is real severe, it can take more than 5 or 6 casts to make the correction. However, it never hurts to get a 2nd opinion especially if your doctor is not listed on Dr. Ponseti's site. It also doesn't necessarily mean your doctor is bad. And luckily, you are still in the very beginning stages so if you decide to go elsewhere, you have lost very little time. I have heard others from PA said they couldn't find a Ponseti trained doctor so they go to Dr. Herzenberg in Baltimore. Everyone on this board will give you a lot of help and insight. I left my 1st doctor when my daughter was 6 months. We had to start all over at that point. So try to do more research and like I said, 5 weeks in is still plenty early enough where too much time won't be lost if you choose another doctor. Good luck and keep us informed! & (3/2/04) bcf (4 casts, 2nd go-around) Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 , on the same schedule as Christian (4th cast, 2nd time around) with Dr. Herzenberg and we switched over to him when he was 6 months also. Is she going to have the tenotomy soon? Mommy to 12/17/98 and Christian 1/30/04 _____ From: susan.shook@... Sent: Monday, September 13, 2004 8:29 AM To: nosurgery4clubfoot Subject: Re: Question Hello ! You have reason to be concerned, but please also remember every childs case is different. If the cf is real severe, it can take more than 5 or 6 casts to make the correction. However, it never hurts to get a 2nd opinion especially if your doctor is not listed on Dr. Ponseti's site. It also doesn't necessarily mean your doctor is bad. And luckily, you are still in the very beginning stages so if you decide to go elsewhere, you have lost very little time. I have heard others from PA said they couldn't find a Ponseti trained doctor so they go to Dr. Herzenberg in Baltimore. Everyone on this board will give you a lot of help and insight. I left my 1st doctor when my daughter was 6 months. We had to start all over at that point. So try to do more research and like I said, 5 weeks in is still plenty early enough where too much time won't be lost if you choose another doctor. Good luck and keep us informed! & (3/2/04) bcf (4 casts, 2nd go-around) Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 , on the same schedule as Christian (4th cast, 2nd time around) with Dr. Herzenberg and we switched over to him when he was 6 months also. Is she going to have the tenotomy soon? Mommy to 12/17/98 and Christian 1/30/04 _____ From: susan.shook@... Sent: Monday, September 13, 2004 8:29 AM To: nosurgery4clubfoot Subject: Re: Question Hello ! You have reason to be concerned, but please also remember every childs case is different. If the cf is real severe, it can take more than 5 or 6 casts to make the correction. However, it never hurts to get a 2nd opinion especially if your doctor is not listed on Dr. Ponseti's site. It also doesn't necessarily mean your doctor is bad. And luckily, you are still in the very beginning stages so if you decide to go elsewhere, you have lost very little time. I have heard others from PA said they couldn't find a Ponseti trained doctor so they go to Dr. Herzenberg in Baltimore. Everyone on this board will give you a lot of help and insight. I left my 1st doctor when my daughter was 6 months. We had to start all over at that point. So try to do more research and like I said, 5 weeks in is still plenty early enough where too much time won't be lost if you choose another doctor. Good luck and keep us informed! & (3/2/04) bcf (4 casts, 2nd go-around) Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 I really don't mind going in, because it gives me a chance to meet some of other cancer patients and chat with them and talk to my nurses. Just plain getting out of the house. But for some who maybe are by themselves, or live quite a distance I can understand it would be a strain. That is cool that Glenn doesn't have to go in for all three days. Jolene Question This has been bugging me for a while....Does anyone know why some people have to return to the hospital 3 days in a row for their Folfox/Avastin treatments? Glenn goes the first day (which is a Friday) and has blood work, then they order the chemo mixed, if counts are o.k. and bring it up. While we are waiting they start the anti-nausea/fluids and the he has a 3+ hr drip and he is sent home with the pump and his tiny bag of chemo. He does not have to return to the hospital on Saturday; and on Sunday, they send out a Home Nurse to disconnect the pump at the 46th hour. It just seems so inconvenient that people have to travel so far or even if it's close, go to the hosp. 3 days in a row. Maybe Glenn has a different pump or something?? Anyway, I count our blessings on this one!! And wish so badly for those of you that have to go 3 days in a row that you didn't have to do that!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 I really don't mind going in, because it gives me a chance to meet some of other cancer patients and chat with them and talk to my nurses. Just plain getting out of the house. But for some who maybe are by themselves, or live quite a distance I can understand it would be a strain. That is cool that Glenn doesn't have to go in for all three days. Jolene Question This has been bugging me for a while....Does anyone know why some people have to return to the hospital 3 days in a row for their Folfox/Avastin treatments? Glenn goes the first day (which is a Friday) and has blood work, then they order the chemo mixed, if counts are o.k. and bring it up. While we are waiting they start the anti-nausea/fluids and the he has a 3+ hr drip and he is sent home with the pump and his tiny bag of chemo. He does not have to return to the hospital on Saturday; and on Sunday, they send out a Home Nurse to disconnect the pump at the 46th hour. It just seems so inconvenient that people have to travel so far or even if it's close, go to the hosp. 3 days in a row. Maybe Glenn has a different pump or something?? Anyway, I count our blessings on this one!! And wish so badly for those of you that have to go 3 days in a row that you didn't have to do that!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 I really don't mind going in, because it gives me a chance to meet some of other cancer patients and chat with them and talk to my nurses. Just plain getting out of the house. But for some who maybe are by themselves, or live quite a distance I can understand it would be a strain. That is cool that Glenn doesn't have to go in for all three days. Jolene Question This has been bugging me for a while....Does anyone know why some people have to return to the hospital 3 days in a row for their Folfox/Avastin treatments? Glenn goes the first day (which is a Friday) and has blood work, then they order the chemo mixed, if counts are o.k. and bring it up. While we are waiting they start the anti-nausea/fluids and the he has a 3+ hr drip and he is sent home with the pump and his tiny bag of chemo. He does not have to return to the hospital on Saturday; and on Sunday, they send out a Home Nurse to disconnect the pump at the 46th hour. It just seems so inconvenient that people have to travel so far or even if it's close, go to the hosp. 3 days in a row. Maybe Glenn has a different pump or something?? Anyway, I count our blessings on this one!! And wish so badly for those of you that have to go 3 days in a row that you didn't have to do that!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
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