Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 Sorry I have not been posting on here very much, but I do read most of the topics, people just beat me to the punch and give the same advice I would give. got his seventh cast on December 13, 2010 and we got some very bitter sweet news while we were there. The PA Mike said that as long as stays at this degree, 25, he will not have to have surgery!!! Very exciting. So I asked how do we keep him there. He told me that in order to keep him at this degree or below we would be doing some form of casting or bracing for the next 14 to 16 years. Although I am excited about not having to have surgery I do not think we can financially afford to keep traveling across the country for this type of treatment. if you guys do not know already we live in Northern Indiana and travel all the way to SLC for 's casts. I am really hoping that the Doctor that is starting up in Indy will get on the ball and get enough experience that we will feel comfortable switching to him. Here is where the advice comes in. While in SLC Dr. D said something to us about switching to a brace over the summer. i am not sure I feel comfortable with this because we have already had a brace in the beginning and to me they were so much more difficult than casts because you have the option of taking it off and I gave in a lot. Also i am not certain that a brace is best for because to me it seems like he has such a stubborn curve. this being out 7th cast i feel like we should have better numbers. I am just confused cause i want to do what is best for . if that means casting for awhile longer that is fine with me. Any and all advice is needed at this point. Mommy to 7th cast from SLC, 25 degrees Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 You have done a great job of following your intuition and I know that will help you figure this out. The good thing is, if he does go into a well made brace this summer, you will be keeping a very close eye on him and if you notice regression you are in SLC where they are willing to continue casting/bracing to avoid surgery. Many hospitals/docs are not willing and/or able to alternate casting/bracing for over a decade to avoid surgery. Hopefully, this tide is now turning. I understand 100% about the financial issues going to SLC for a decade could bring, and think dialogue between you and the surgeon in Indy could be of benefit in the future. But, hang tight in SLC for as long as you can and see if the surgeon in Indy is on the same page with J's treatment and what you want and believe would be the best for him. Sincerely, HRH > Sorry I have not been posting on here very much, but I do read most of the > topics, people just beat me to the punch and give the same advice I would > give. got his seventh cast on December 13, 2010 and we got some > very bitter sweet news while we were there. The PA Mike said that as long > as stays at this degree, 25, he will not have to have surgery!!! > Very exciting. So I asked how do we keep him there. He told me that in > order to keep him at this degree or below we would be doing some form of > casting or bracing for the next 14 to 16 years. Although I am excited > about not having to have surgery I do not think we can financially afford > to keep traveling across the country for this type of treatment. if you > guys do not know already we live in Northern Indiana and travel all the > way to SLC for 's casts. I am really hoping that the Doctor that is > starting up in Indy will get on the ball and get enough experience that we > will feel comfortable switching to him. Here is where the advice comes in. > While in SLC Dr. D said something to us about switching to a brace over > the summer. i am not sure I feel comfortable with this because we have > already had a brace in the beginning and to me they were so much more > difficult than casts because you have the option of taking it off and I > gave in a lot. Also i am not certain that a brace is best for > because to me it seems like he has such a stubborn curve. this being out > 7th cast i feel like we should have better numbers. I am just confused > cause i want to do what is best for . if that means casting for > awhile longer that is fine with me. Any and all advice is needed at this > point. > > Mommy to > 7th cast from SLC, 25 degrees > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Just my humble 2 cents-I would find the nearest hospital where you can keep going, God willing there will be more doctors on board soon, Beth! That is a lot of travel, I agree- very hard. Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Thu, January 13, 2011 1:44:37 PMSubject: Re: 's News/Advice Needed You have done a great job of following your intuition and I know that will help you figure this out. The good thing is, if he does go into a well made brace this summer, you will be keeping a very close eye on him and if you notice regression you are in SLC where they are willing to continue casting/bracing to avoid surgery. Many hospitals/docs are not willing and/or able to alternate casting/bracing for over a decade to avoid surgery. Hopefully, this tide is now turning. I understand 100% about the financial issues going to SLC for a decade could bring, and think dialogue between you and the surgeon in Indy could be of benefit in the future. But, hang tight in SLC for as long as you can and see if the surgeon in Indy is on the same page with J's treatment and what you want and believe would be the best for him. Sincerely, HRH > Sorry I have not been posting on here very much, but I do read most of the > topics, people just beat me to the punch and give the same advice I would > give. got his seventh cast on December 13, 2010 and we got some > very bitter sweet news while we were there. The PA Mike said that as long > as stays at this degree, 25, he will not have to have surgery!!! > Very exciting. So I asked how do we keep him there. He told me that in > order to keep him at this degree or below we would be doing some form of > casting or bracing for the next 14 to 16 years. Although I am excited > about not having to have surgery I do not think we can financially afford > to keep traveling across the country for this type of treatment. if you > guys do not know already we live in Northern Indiana and travel all the > way to SLC for 's casts. I am really hoping that the Doctor that is > starting up in Indy will get on the ball and get enough experience that we > will feel comfortable switching to him. Here is where the advice comes in. > While in SLC Dr. D said something to us about switching to a brace over > the summer. i am not sure I feel comfortable with this because we have > already had a brace in the beginning and to me they were so much more > difficult than casts because you have the option of taking it off and I > gave in a lot. Also i am not certain that a brace is best for > because to me it seems like he has such a stubborn curve. this being out > 7th cast i feel like we should have better numbers. I am just confused > cause i want to do what is best for . if that means casting for > awhile longer that is fine with me. Any and all advice is needed at this > point. > > Mommy to > 7th cast from SLC, 25 degrees > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Beth, What part of Indiana do you live in? I live in Indy. My daughter, Makenna, has been treated in Chicago. She was treated with a series of 4 casts and is currently in a brace. You can read more about her story at sosmakenna.com. I have spoken with the nurse in Indy and hope to talk more with her and the doc soon. My initial outreach was primarily so that they knew there were families in this area that had experience (and success) with casting,in case they needed the resource or wanted to use our stories for publicity purposes. I hope to keep an ongoing dialogue with them. It is my understanding, though, that he has been casting in California for quite some time ~ maybe could address this since my experience is only two years old... Anyway.. I think there are lots of viable options close to home. Dr. H is in Chicago, the new Dr. in Indy (his name escapes me right now...) and Dr. S is now in Cincinatti. ~Amy > > Sorry I have not been posting on here very much, but I do read most of the topics, people just beat me to the punch and give the same advice I would give. got his seventh cast on December 13, 2010 and we got some very bitter sweet news while we were there. The PA Mike said that as long as stays at this degree, 25, he will not have to have surgery!!! Very exciting. So I asked how do we keep him there. He told me that in order to keep him at this degree or below we would be doing some form of casting or bracing for the next 14 to 16 years. Although I am excited about not having to have surgery I do not think we can financially afford to keep traveling across the country for this type of treatment. if you guys do not know already we live in Northern Indiana and travel all the way to SLC for 's casts. I am really hoping that the Doctor that is starting up in Indy will get on the ball and get enough experience that we will feel comfortable switching to him. Here is where the advice comes in. While in SLC Dr. D said something to us about switching to a brace over the summer. i am not sure I feel comfortable with this because we have already had a brace in the beginning and to me they were so much more difficult than casts because you have the option of taking it off and I gave in a lot. Also i am not certain that a brace is best for because to me it seems like he has such a stubborn curve. this being out 7th cast i feel like we should have better numbers. I am just confused cause i want to do what is best for . if that means casting for awhile longer that is fine with me. Any and all advice is needed at this point. > > Mommy to > 7th cast from SLC, 25 degrees > Quote Link to comment Share on other sites More sharing options...
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