Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 I think I read somewhere that lumbar curves are more difficult to treat than a thoracic. Have they considered putting her back in a cast since she did so well in it? If she only had three casts, maybe they were premature in removing it?? What is her rotation like? Perhaps the rotation isn't resolved enough yet to have her out of cast. Just throwing out some guesses that maybe you could ask your doc about. Hope they can figure out what is going on. Keep us posted. Noelle (12-2-01) Ian (8-15-04) a question Hi, I have posted a few times before about my 2 year old daughter. She is a twin, Baby A. She had torticollis which did not respond to PT and had the SCM release at 13 months. At 10 months she was dx with a mild curve of 24 degrees. The curve progressed very quickly to 57.3 degrees and she was placed in a series of 3 casts. When the last cast was removed she was virtually straight. ~~~ 5 degrees thoracic curve the lumbar had resolved. Immediately at cast removal they casted her for her TLSO, it took 4 days to get it. The first xray in her brace was heart wrenching. Both the thoracic and the lumbar curve had returned, the picture looked like a snake. (this was in Feb.) They have made lots of modifications and she was at least holding her own. Her spine is very very flexible. We had an xray 2 weeks ago and they added another pad for the thoracic curve. Remarkably it looks better now, but just in 2 weeks the lumbar curve progressed. The oddest thing about all of this is that when you look at her she looks completely straight. The xrays show an entirely different picture, as a matter of fact prior to her SCM release you could see the thoracic curve and then after a few months it looked so much better. Just recently I can obviously feel the lumbar curve more than before. They added an extra pad to the TLSO to support her, and her physician is contacting a world known ped ortho in France with all her films and H and P. Does anyone know who that is? He said the name, but of course I can not remember it. I have heard all along that with casting and bracing infantile scoliosis resolves usually...and that usually it is the thoracic curves you see, not the lumbar, and now her lumbar is progressing??? Does anyone have a take on this, or a similar experience? I was just so hoping this was all going to be ending again, and it seems like we are going for round 2. I am just so disappointed for her. I so badly want this all to be over, and now can no longer see the light at the end of the tunnel. Most days I handle all of this so well, but I have really been having a hard time. Just wondering if anyone else had a similar experience? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 I think I read somewhere that lumbar curves are more difficult to treat than a thoracic. Have they considered putting her back in a cast since she did so well in it? If she only had three casts, maybe they were premature in removing it?? What is her rotation like? Perhaps the rotation isn't resolved enough yet to have her out of cast. Just throwing out some guesses that maybe you could ask your doc about. Hope they can figure out what is going on. Keep us posted. Noelle (12-2-01) Ian (8-15-04) a question Hi, I have posted a few times before about my 2 year old daughter. She is a twin, Baby A. She had torticollis which did not respond to PT and had the SCM release at 13 months. At 10 months she was dx with a mild curve of 24 degrees. The curve progressed very quickly to 57.3 degrees and she was placed in a series of 3 casts. When the last cast was removed she was virtually straight. ~~~ 5 degrees thoracic curve the lumbar had resolved. Immediately at cast removal they casted her for her TLSO, it took 4 days to get it. The first xray in her brace was heart wrenching. Both the thoracic and the lumbar curve had returned, the picture looked like a snake. (this was in Feb.) They have made lots of modifications and she was at least holding her own. Her spine is very very flexible. We had an xray 2 weeks ago and they added another pad for the thoracic curve. Remarkably it looks better now, but just in 2 weeks the lumbar curve progressed. The oddest thing about all of this is that when you look at her she looks completely straight. The xrays show an entirely different picture, as a matter of fact prior to her SCM release you could see the thoracic curve and then after a few months it looked so much better. Just recently I can obviously feel the lumbar curve more than before. They added an extra pad to the TLSO to support her, and her physician is contacting a world known ped ortho in France with all her films and H and P. Does anyone know who that is? He said the name, but of course I can not remember it. I have heard all along that with casting and bracing infantile scoliosis resolves usually...and that usually it is the thoracic curves you see, not the lumbar, and now her lumbar is progressing??? Does anyone have a take on this, or a similar experience? I was just so hoping this was all going to be ending again, and it seems like we are going for round 2. I am just so disappointed for her. I so badly want this all to be over, and now can no longer see the light at the end of the tunnel. Most days I handle all of this so well, but I have really been having a hard time. Just wondering if anyone else had a similar experience? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 My son is also a twin, baby A too. I agree with ..............ask your doc about the rotation. I know you are upset by this set back, but just remember you are doing the best for your baby. This whole process has its highs and lows. I think we ALL have been there in some way with our child's treatment. I have learned that it is a S L O W process and I can't rush it. Every child is different so we really can't go by how another child responded to his/her treatment, but it does give us some sort of an idea. Anyway hang in there Mom and talk to your doctor about the rotation and maybe casting again. Keep us posted. Tasha Mommy of twin boys- and 24mths Fort Worth, Texas corlieburr wrote: Hi, I have posted a few times before about my 2 year old daughter. She is a twin, Baby A. She had torticollis which did not respond to PT and had the SCM release at 13 months. At 10 months she was dx with a mild curve of 24 degrees. The curve progressed very quickly to 57.3 degrees and she was placed in a series of 3 casts. When the last cast was removed she was virtually straight. ~~~ 5 degrees thoracic curve the lumbar had resolved. Immediately at cast removal they casted her for her TLSO, it took 4 days to get it. The first xray in her brace was heart wrenching. Both the thoracic and the lumbar curve had returned, the picture looked like a snake. (this was in Feb.) They have made lots of modifications and she was at least holding her own. Her spine is very very flexible. We had an xray 2 weeks ago and they added another pad for the thoracic curve. Remarkably it looks better now, but just in 2 weeks the lumbar curve progressed. The oddest thing about all of this is that when you look at her she looks completely straight. The xrays show an entirely different picture, as a matter of fact prior to her SCM release you could see the thoracic curve and then after a few months it looked so much better. Just recently I can obviously feel the lumbar curve more than before. They added an extra pad to the TLSO to support her, and her physician is contacting a world known ped ortho in France with all her films and H and P. Does anyone know who that is? He said the name, but of course I can not remember it. I have heard all along that with casting and bracing infantile scoliosis resolves usually...and that usually it is the thoracic curves you see, not the lumbar, and now her lumbar is progressing??? Does anyone have a take on this, or a similar experience? I was just so hoping this was all going to be ending again, and it seems like we are going for round 2. I am just so disappointed for her. I so badly want this all to be over, and now can no longer see the light at the end of the tunnel. Most days I handle all of this so well, but I have really been having a hard time. Just wondering if anyone else had a similar experience? Thanks. --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 My son is also a twin, baby A too. I agree with ..............ask your doc about the rotation. I know you are upset by this set back, but just remember you are doing the best for your baby. This whole process has its highs and lows. I think we ALL have been there in some way with our child's treatment. I have learned that it is a S L O W process and I can't rush it. Every child is different so we really can't go by how another child responded to his/her treatment, but it does give us some sort of an idea. Anyway hang in there Mom and talk to your doctor about the rotation and maybe casting again. Keep us posted. Tasha Mommy of twin boys- and 24mths Fort Worth, Texas corlieburr wrote: Hi, I have posted a few times before about my 2 year old daughter. She is a twin, Baby A. She had torticollis which did not respond to PT and had the SCM release at 13 months. At 10 months she was dx with a mild curve of 24 degrees. The curve progressed very quickly to 57.3 degrees and she was placed in a series of 3 casts. When the last cast was removed she was virtually straight. ~~~ 5 degrees thoracic curve the lumbar had resolved. Immediately at cast removal they casted her for her TLSO, it took 4 days to get it. The first xray in her brace was heart wrenching. Both the thoracic and the lumbar curve had returned, the picture looked like a snake. (this was in Feb.) They have made lots of modifications and she was at least holding her own. Her spine is very very flexible. We had an xray 2 weeks ago and they added another pad for the thoracic curve. Remarkably it looks better now, but just in 2 weeks the lumbar curve progressed. The oddest thing about all of this is that when you look at her she looks completely straight. The xrays show an entirely different picture, as a matter of fact prior to her SCM release you could see the thoracic curve and then after a few months it looked so much better. Just recently I can obviously feel the lumbar curve more than before. They added an extra pad to the TLSO to support her, and her physician is contacting a world known ped ortho in France with all her films and H and P. Does anyone know who that is? He said the name, but of course I can not remember it. I have heard all along that with casting and bracing infantile scoliosis resolves usually...and that usually it is the thoracic curves you see, not the lumbar, and now her lumbar is progressing??? Does anyone have a take on this, or a similar experience? I was just so hoping this was all going to be ending again, and it seems like we are going for round 2. I am just so disappointed for her. I so badly want this all to be over, and now can no longer see the light at the end of the tunnel. Most days I handle all of this so well, but I have really been having a hard time. Just wondering if anyone else had a similar experience? Thanks. --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 My son is also a twin, baby A too. I agree with ..............ask your doc about the rotation. I know you are upset by this set back, but just remember you are doing the best for your baby. This whole process has its highs and lows. I think we ALL have been there in some way with our child's treatment. I have learned that it is a S L O W process and I can't rush it. Every child is different so we really can't go by how another child responded to his/her treatment, but it does give us some sort of an idea. Anyway hang in there Mom and talk to your doctor about the rotation and maybe casting again. Keep us posted. Tasha Mommy of twin boys- and 24mths Fort Worth, Texas corlieburr wrote: Hi, I have posted a few times before about my 2 year old daughter. She is a twin, Baby A. She had torticollis which did not respond to PT and had the SCM release at 13 months. At 10 months she was dx with a mild curve of 24 degrees. The curve progressed very quickly to 57.3 degrees and she was placed in a series of 3 casts. When the last cast was removed she was virtually straight. ~~~ 5 degrees thoracic curve the lumbar had resolved. Immediately at cast removal they casted her for her TLSO, it took 4 days to get it. The first xray in her brace was heart wrenching. Both the thoracic and the lumbar curve had returned, the picture looked like a snake. (this was in Feb.) They have made lots of modifications and she was at least holding her own. Her spine is very very flexible. We had an xray 2 weeks ago and they added another pad for the thoracic curve. Remarkably it looks better now, but just in 2 weeks the lumbar curve progressed. The oddest thing about all of this is that when you look at her she looks completely straight. The xrays show an entirely different picture, as a matter of fact prior to her SCM release you could see the thoracic curve and then after a few months it looked so much better. Just recently I can obviously feel the lumbar curve more than before. They added an extra pad to the TLSO to support her, and her physician is contacting a world known ped ortho in France with all her films and H and P. Does anyone know who that is? He said the name, but of course I can not remember it. I have heard all along that with casting and bracing infantile scoliosis resolves usually...and that usually it is the thoracic curves you see, not the lumbar, and now her lumbar is progressing??? Does anyone have a take on this, or a similar experience? I was just so hoping this was all going to be ending again, and it seems like we are going for round 2. I am just so disappointed for her. I so badly want this all to be over, and now can no longer see the light at the end of the tunnel. Most days I handle all of this so well, but I have really been having a hard time. Just wondering if anyone else had a similar experience? Thanks. --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 My daughter's curve was lumbar and she too was also very flexible. I think the doc you're referring to is ; however, I can't remember his last name. I am thinking he's not an actual doc though. speaks to him pretty frequently, so maybe she can enlighten us. I have a few thoughts about your daughter's treatment too. Where are you having her casted? Is her doc addressing her rotation? What type of cast is being applied? Why was she only put in a series of three casts? Do you know her RVAD? Has her rotation been measured? It sounds like a compensatory (sp?) curve is what is developed in the lumbar curve, and those are usually a result of rotation. When my daughter's rotation was being addressed, she developed a compensatory curve, which resolved with rotation correction. You stated at removal of her last cast her curve was only 5. I am curious about two things, one how long after the cast was removed was that x-ray taken? Two, what were her measurements when the second one was removed? She needs an opportunity to be in at least one, preferably two more casts, after attaining curve correction for her spine to learn to stay that way according to Ms. Mehta's theory/research. Finally, was she in any PT and or activity like gymnastics, after her final cast was removed to help build up her torso muscles to support her new straight spine? How long was she wearing her brace each day? Were x-rays taken in the new brace to assure it was holding her straight? Was her brace made from a plaster mold? Am I correct in understanding after her final was removed, she was in nothing for four days? In my daughter's case, the mold for her first brace was made when she was under anesthesia having her final cast applied. I didn't allow her final cast to be removed until I saw the actual brace and knew it was ready to go on her immediately after the final cast came off. I actually put it on her in the cast room. I know all of this can very overwhelming and discouraging. You are fighting for her and obviously have you hands full with twins. I wish you and your family the very best. If you would like to chat, email me privately with your number and a good time to call. Jen corlieburr wrote: Hi, I have posted a few times before about my 2 year old daughter. She is a twin, Baby A. She had torticollis which did not respond to PT and had the SCM release at 13 months. At 10 months she was dx with a mild curve of 24 degrees. The curve progressed very quickly to 57.3 degrees and she was placed in a series of 3 casts. When the last cast was removed she was virtually straight. ~~~ 5 degrees thoracic curve the lumbar had resolved. Immediately at cast removal they casted her for her TLSO, it took 4 days to get it. The first xray in her brace was heart wrenching. Both the thoracic and the lumbar curve had returned, the picture looked like a snake. (this was in Feb.) They have made lots of modifications and she was at least holding her own. Her spine is very very flexible. We had an xray 2 weeks ago and they added another pad for the thoracic curve. Remarkably it looks better now, but just in 2 weeks the lumbar curve progressed. The oddest thing about all of this is that when you look at her she looks completely straight. The xrays show an entirely different picture, as a matter of fact prior to her SCM release you could see the thoracic curve and then after a few months it looked so much better. Just recently I can obviously feel the lumbar curve more than before. They added an extra pad to the TLSO to support her, and her physician is contacting a world known ped ortho in France with all her films and H and P. Does anyone know who that is? He said the name, but of course I can not remember it. I have heard all along that with casting and bracing infantile scoliosis resolves usually...and that usually it is the thoracic curves you see, not the lumbar, and now her lumbar is progressing??? Does anyone have a take on this, or a similar experience? I was just so hoping this was all going to be ending again, and it seems like we are going for round 2. I am just so disappointed for her. I so badly want this all to be over, and now can no longer see the light at the end of the tunnel. Most days I handle all of this so well, but I have really been having a hard time. Just wondering if anyone else had a similar experience? Thanks. --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 My daughter's curve was lumbar and she too was also very flexible. I think the doc you're referring to is ; however, I can't remember his last name. I am thinking he's not an actual doc though. speaks to him pretty frequently, so maybe she can enlighten us. I have a few thoughts about your daughter's treatment too. Where are you having her casted? Is her doc addressing her rotation? What type of cast is being applied? Why was she only put in a series of three casts? Do you know her RVAD? Has her rotation been measured? It sounds like a compensatory (sp?) curve is what is developed in the lumbar curve, and those are usually a result of rotation. When my daughter's rotation was being addressed, she developed a compensatory curve, which resolved with rotation correction. You stated at removal of her last cast her curve was only 5. I am curious about two things, one how long after the cast was removed was that x-ray taken? Two, what were her measurements when the second one was removed? She needs an opportunity to be in at least one, preferably two more casts, after attaining curve correction for her spine to learn to stay that way according to Ms. Mehta's theory/research. Finally, was she in any PT and or activity like gymnastics, after her final cast was removed to help build up her torso muscles to support her new straight spine? How long was she wearing her brace each day? Were x-rays taken in the new brace to assure it was holding her straight? Was her brace made from a plaster mold? Am I correct in understanding after her final was removed, she was in nothing for four days? In my daughter's case, the mold for her first brace was made when she was under anesthesia having her final cast applied. I didn't allow her final cast to be removed until I saw the actual brace and knew it was ready to go on her immediately after the final cast came off. I actually put it on her in the cast room. I know all of this can very overwhelming and discouraging. You are fighting for her and obviously have you hands full with twins. I wish you and your family the very best. If you would like to chat, email me privately with your number and a good time to call. Jen corlieburr wrote: Hi, I have posted a few times before about my 2 year old daughter. She is a twin, Baby A. She had torticollis which did not respond to PT and had the SCM release at 13 months. At 10 months she was dx with a mild curve of 24 degrees. The curve progressed very quickly to 57.3 degrees and she was placed in a series of 3 casts. When the last cast was removed she was virtually straight. ~~~ 5 degrees thoracic curve the lumbar had resolved. Immediately at cast removal they casted her for her TLSO, it took 4 days to get it. The first xray in her brace was heart wrenching. Both the thoracic and the lumbar curve had returned, the picture looked like a snake. (this was in Feb.) They have made lots of modifications and she was at least holding her own. Her spine is very very flexible. We had an xray 2 weeks ago and they added another pad for the thoracic curve. Remarkably it looks better now, but just in 2 weeks the lumbar curve progressed. The oddest thing about all of this is that when you look at her she looks completely straight. The xrays show an entirely different picture, as a matter of fact prior to her SCM release you could see the thoracic curve and then after a few months it looked so much better. Just recently I can obviously feel the lumbar curve more than before. They added an extra pad to the TLSO to support her, and her physician is contacting a world known ped ortho in France with all her films and H and P. Does anyone know who that is? He said the name, but of course I can not remember it. I have heard all along that with casting and bracing infantile scoliosis resolves usually...and that usually it is the thoracic curves you see, not the lumbar, and now her lumbar is progressing??? Does anyone have a take on this, or a similar experience? I was just so hoping this was all going to be ending again, and it seems like we are going for round 2. I am just so disappointed for her. I so badly want this all to be over, and now can no longer see the light at the end of the tunnel. Most days I handle all of this so well, but I have really been having a hard time. Just wondering if anyone else had a similar experience? Thanks. --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 My daughter's curve was lumbar and she too was also very flexible. I think the doc you're referring to is ; however, I can't remember his last name. I am thinking he's not an actual doc though. speaks to him pretty frequently, so maybe she can enlighten us. I have a few thoughts about your daughter's treatment too. Where are you having her casted? Is her doc addressing her rotation? What type of cast is being applied? Why was she only put in a series of three casts? Do you know her RVAD? Has her rotation been measured? It sounds like a compensatory (sp?) curve is what is developed in the lumbar curve, and those are usually a result of rotation. When my daughter's rotation was being addressed, she developed a compensatory curve, which resolved with rotation correction. You stated at removal of her last cast her curve was only 5. I am curious about two things, one how long after the cast was removed was that x-ray taken? Two, what were her measurements when the second one was removed? She needs an opportunity to be in at least one, preferably two more casts, after attaining curve correction for her spine to learn to stay that way according to Ms. Mehta's theory/research. Finally, was she in any PT and or activity like gymnastics, after her final cast was removed to help build up her torso muscles to support her new straight spine? How long was she wearing her brace each day? Were x-rays taken in the new brace to assure it was holding her straight? Was her brace made from a plaster mold? Am I correct in understanding after her final was removed, she was in nothing for four days? In my daughter's case, the mold for her first brace was made when she was under anesthesia having her final cast applied. I didn't allow her final cast to be removed until I saw the actual brace and knew it was ready to go on her immediately after the final cast came off. I actually put it on her in the cast room. I know all of this can very overwhelming and discouraging. You are fighting for her and obviously have you hands full with twins. I wish you and your family the very best. If you would like to chat, email me privately with your number and a good time to call. Jen corlieburr wrote: Hi, I have posted a few times before about my 2 year old daughter. She is a twin, Baby A. She had torticollis which did not respond to PT and had the SCM release at 13 months. At 10 months she was dx with a mild curve of 24 degrees. The curve progressed very quickly to 57.3 degrees and she was placed in a series of 3 casts. When the last cast was removed she was virtually straight. ~~~ 5 degrees thoracic curve the lumbar had resolved. Immediately at cast removal they casted her for her TLSO, it took 4 days to get it. The first xray in her brace was heart wrenching. Both the thoracic and the lumbar curve had returned, the picture looked like a snake. (this was in Feb.) They have made lots of modifications and she was at least holding her own. Her spine is very very flexible. We had an xray 2 weeks ago and they added another pad for the thoracic curve. Remarkably it looks better now, but just in 2 weeks the lumbar curve progressed. The oddest thing about all of this is that when you look at her she looks completely straight. The xrays show an entirely different picture, as a matter of fact prior to her SCM release you could see the thoracic curve and then after a few months it looked so much better. Just recently I can obviously feel the lumbar curve more than before. They added an extra pad to the TLSO to support her, and her physician is contacting a world known ped ortho in France with all her films and H and P. Does anyone know who that is? He said the name, but of course I can not remember it. I have heard all along that with casting and bracing infantile scoliosis resolves usually...and that usually it is the thoracic curves you see, not the lumbar, and now her lumbar is progressing??? Does anyone have a take on this, or a similar experience? I was just so hoping this was all going to be ending again, and it seems like we are going for round 2. I am just so disappointed for her. I so badly want this all to be over, and now can no longer see the light at the end of the tunnel. Most days I handle all of this so well, but I have really been having a hard time. Just wondering if anyone else had a similar experience? Thanks. --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 I forgot to ask earlier, has your daughter had any testing for a connective tissue disorder? (ie, seen a geneticist, had an opthamological slit test, renal unltrasound, VCUG, echocardiagram, etc.) corlieburr wrote: Hi, I have posted a few times before about my 2 year old daughter. She is a twin, Baby A. She had torticollis which did not respond to PT and had the SCM release at 13 months. At 10 months she was dx with a mild curve of 24 degrees. The curve progressed very quickly to 57.3 degrees and she was placed in a series of 3 casts. When the last cast was removed she was virtually straight. ~~~ 5 degrees thoracic curve the lumbar had resolved. Immediately at cast removal they casted her for her TLSO, it took 4 days to get it. The first xray in her brace was heart wrenching. Both the thoracic and the lumbar curve had returned, the picture looked like a snake. (this was in Feb.) They have made lots of modifications and she was at least holding her own. Her spine is very very flexible. We had an xray 2 weeks ago and they added another pad for the thoracic curve. Remarkably it looks better now, but just in 2 weeks the lumbar curve progressed. The oddest thing about all of this is that when you look at her she looks completely straight. The xrays show an entirely different picture, as a matter of fact prior to her SCM release you could see the thoracic curve and then after a few months it looked so much better. Just recently I can obviously feel the lumbar curve more than before. They added an extra pad to the TLSO to support her, and her physician is contacting a world known ped ortho in France with all her films and H and P. Does anyone know who that is? He said the name, but of course I can not remember it. I have heard all along that with casting and bracing infantile scoliosis resolves usually...and that usually it is the thoracic curves you see, not the lumbar, and now her lumbar is progressing??? Does anyone have a take on this, or a similar experience? I was just so hoping this was all going to be ending again, and it seems like we are going for round 2. I am just so disappointed for her. I so badly want this all to be over, and now can no longer see the light at the end of the tunnel. Most days I handle all of this so well, but I have really been having a hard time. Just wondering if anyone else had a similar experience? Thanks. --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 she has had a vision test which she passed, that is all the extra testing. should i ask for more? - -- In infantile scoliosis treatment , wrote: > > I forgot to ask earlier, has your daughter had any testing for a connective tissue disorder? (ie, seen a geneticist, had an opthamological slit test, renal unltrasound, VCUG, echocardiagram, etc.) > > corlieburr wrote: Hi, I have posted a few times before about my 2 year old daughter. > She is a twin, Baby A. She had torticollis which did not respond > to PT and had the SCM release at 13 months. At 10 months she was dx > with a mild curve of 24 degrees. The curve progressed very quickly > to 57.3 degrees and she was placed in a series of 3 casts. When the > last cast was removed she was virtually straight. ~~~ 5 degrees > thoracic curve the lumbar had resolved. Immediately at cast removal > they casted her for her TLSO, it took 4 days to get it. The first > xray in her brace was heart wrenching. Both the thoracic and the > lumbar curve had returned, the picture looked like a snake. (this > was in Feb.) They have made lots of modifications and she was at > least holding her own. Her spine is very very flexible. We had an > xray 2 weeks ago and they added another pad for the thoracic curve. > Remarkably it looks better now, but just in 2 weeks the lumbar curve > progressed. The oddest thing about all of this is that when you > look at her she looks completely straight. The xrays show an > entirely different picture, as a matter of fact prior to her SCM > release you could see the thoracic curve and then after a few months > it looked so much better. Just recently I can obviously feel the > lumbar curve more than before. They added an extra pad to the TLSO > to support her, and her physician is contacting a world known ped > ortho in France with all her films and H and P. Does anyone know > who that is? He said the name, but of course I can not remember > it. I have heard all along that with casting and bracing infantile > scoliosis resolves usually...and that usually it is the thoracic > curves you see, not the lumbar, and now her lumbar is progressing??? > Does anyone have a take on this, or a similar experience? I was > just so hoping this was all going to be ending again, and it seems > like we are going for round 2. I am just so disappointed for her. > I so badly want this all to be over, and now can no longer see the > light at the end of the tunnel. Most days I handle all of this so > well, but I have really been having a hard time. Just wondering if > anyone else had a similar experience? Thanks. > > > > > > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Autos. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 My daughter was casted at the Medical University. She was in a plaster cast, and she was only casted 3 times because her curve responded so well. As far as rotation I guess it is being addressed by the many changes that have been made to her brace. I will try and email her xrays to you. These are the ones before and during the casting. I have no way to download the current ones. When she measured 5 degrees she was placed in the 3rd cast. She has been d/ced from PT for almost a year. Her brace was made from a plaster mold, and an xray was taken. That is when the first major shock set in, it was HORRIBLE. So the orthotist started working frantically to make adjustments. We have never been even close to her xray prior to being placed in the 3rd cast with the brace. Until now we were just holding our own. I so wanted her to be fitted for the brace while under anesthesia. But the orthotist is in our hometown. We were driving 3 hours for the casts, and to the the ped ortho. He comes to our town 1x /month for a clinic and she is seen there and the orthotist is there. (it is at his office) I hope I answered all the questions. I will try and email you the xrays. > Hi, I have posted a few times before about my 2 year old daughter. > She is a twin, Baby A. She had torticollis which did not respond > to PT and had the SCM release at 13 months. At 10 months she was dx > with a mild curve of 24 degrees. The curve progressed very quickly > to 57.3 degrees and she was placed in a series of 3 casts. When the > last cast was removed she was virtually straight. ~~~ 5 degrees > thoracic curve the lumbar had resolved. Immediately at cast removal > they casted her for her TLSO, it took 4 days to get it. The first > xray in her brace was heart wrenching. Both the thoracic and the > lumbar curve had returned, the picture looked like a snake. (this > was in Feb.) They have made lots of modifications and she was at > least holding her own. Her spine is very very flexible. We had an > xray 2 weeks ago and they added another pad for the thoracic curve. > Remarkably it looks better now, but just in 2 weeks the lumbar curve > progressed. The oddest thing about all of this is that when you > look at her she looks completely straight. The xrays show an > entirely different picture, as a matter of fact prior to her SCM > release you could see the thoracic curve and then after a few months > it looked so much better. Just recently I can obviously feel the > lumbar curve more than before. They added an extra pad to the TLSO > to support her, and her physician is contacting a world known ped > ortho in France with all her films and H and P. Does anyone know > who that is? He said the name, but of course I can not remember > it. I have heard all along that with casting and bracing infantile > scoliosis resolves usually...and that usually it is the thoracic > curves you see, not the lumbar, and now her lumbar is progressing??? > Does anyone have a take on this, or a similar experience? I was > just so hoping this was all going to be ending again, and it seems > like we are going for round 2. I am just so disappointed for her. > I so badly want this all to be over, and now can no longer see the > light at the end of the tunnel. Most days I handle all of this so > well, but I have really been having a hard time. Just wondering if > anyone else had a similar experience? Thanks. > > > > > > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Autos. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 That is all up to your doc. Madison's ped sent her for all of those to rule out a connective tissue disorder. I have noticed on the group that when some of the kiddos' curves come back so soon and aggressively it's because of a CTD. Something to think about and certainly consult with your doc about, I would think. corlieburr wrote: she has had a vision test which she passed, that is all the extra testing. should i ask for more? - -- In infantile scoliosis treatment , wrote: > > I forgot to ask earlier, has your daughter had any testing for a connective tissue disorder? (ie, seen a geneticist, had an opthamological slit test, renal unltrasound, VCUG, echocardiagram, etc.) > > corlieburr wrote: Hi, I have posted a few times before about my 2 year old daughter. > She is a twin, Baby A. She had torticollis which did not respond > to PT and had the SCM release at 13 months. At 10 months she was dx > with a mild curve of 24 degrees. The curve progressed very quickly > to 57.3 degrees and she was placed in a series of 3 casts. When the > last cast was removed she was virtually straight. ~~~ 5 degrees > thoracic curve the lumbar had resolved. Immediately at cast removal > they casted her for her TLSO, it took 4 days to get it. The first > xray in her brace was heart wrenching. Both the thoracic and the > lumbar curve had returned, the picture looked like a snake. (this > was in Feb.) They have made lots of modifications and she was at > least holding her own. Her spine is very very flexible. We had an > xray 2 weeks ago and they added another pad for the thoracic curve. > Remarkably it looks better now, but just in 2 weeks the lumbar curve > progressed. The oddest thing about all of this is that when you > look at her she looks completely straight. The xrays show an > entirely different picture, as a matter of fact prior to her SCM > release you could see the thoracic curve and then after a few months > it looked so much better. Just recently I can obviously feel the > lumbar curve more than before. They added an extra pad to the TLSO > to support her, and her physician is contacting a world known ped > ortho in France with all her films and H and P. Does anyone know > who that is? He said the name, but of course I can not remember > it. I have heard all along that with casting and bracing infantile > scoliosis resolves usually...and that usually it is the thoracic > curves you see, not the lumbar, and now her lumbar is progressing??? > Does anyone have a take on this, or a similar experience? I was > just so hoping this was all going to be ending again, and it seems > like we are going for round 2. I am just so disappointed for her. > I so badly want this all to be over, and now can no longer see the > light at the end of the tunnel. Most days I handle all of this so > well, but I have really been having a hard time. Just wondering if > anyone else had a similar experience? Thanks. > > > > > > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Autos. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Hi , I think only you can decide what's best for you. The thing is, you want to prevent or at least slow down further joint damage. If you don't, you could be looking at joint replacement sometime in the future. That's what the meds are intended to do. As for the lesions, I'm guessing you mean the rash? Am I right? Most of us get rashes similar to those shown...some worse, some not as bad. Do you not get them? Do you, or did you get the high fevers described? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Hi , I think only you can decide what's best for you. The thing is, you want to prevent or at least slow down further joint damage. If you don't, you could be looking at joint replacement sometime in the future. That's what the meds are intended to do. As for the lesions, I'm guessing you mean the rash? Am I right? Most of us get rashes similar to those shown...some worse, some not as bad. Do you not get them? Do you, or did you get the high fevers described? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Hi , I think only you can decide what's best for you. The thing is, you want to prevent or at least slow down further joint damage. If you don't, you could be looking at joint replacement sometime in the future. That's what the meds are intended to do. As for the lesions, I'm guessing you mean the rash? Am I right? Most of us get rashes similar to those shown...some worse, some not as bad. Do you not get them? Do you, or did you get the high fevers described? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Hi , is right about the meds. They are meant to slow the damage of the joints from the illness. Of course there are a lot of other things you can take but there are no promises either way. The meds from the doctor also limit if not eliminate pain, while the " natural " things supposedly just help deterioration of the joint. The pain will remain. As for the lesion, it is a reference to the rash that is typically one of the signs of Stills Disease. It is usually crimson red in color and exquisitly painful to the slightest touch. It's also usually found on the extremities; some people get it on their face as well. For me, I have a " Shadow " of the rash on my hands when I'm in a flare, such as now. I hope this helps explains a few things for you. We're not all text book cases. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Hi , is right about the meds. They are meant to slow the damage of the joints from the illness. Of course there are a lot of other things you can take but there are no promises either way. The meds from the doctor also limit if not eliminate pain, while the " natural " things supposedly just help deterioration of the joint. The pain will remain. As for the lesion, it is a reference to the rash that is typically one of the signs of Stills Disease. It is usually crimson red in color and exquisitly painful to the slightest touch. It's also usually found on the extremities; some people get it on their face as well. For me, I have a " Shadow " of the rash on my hands when I'm in a flare, such as now. I hope this helps explains a few things for you. We're not all text book cases. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Hi , is right about the meds. They are meant to slow the damage of the joints from the illness. Of course there are a lot of other things you can take but there are no promises either way. The meds from the doctor also limit if not eliminate pain, while the " natural " things supposedly just help deterioration of the joint. The pain will remain. As for the lesion, it is a reference to the rash that is typically one of the signs of Stills Disease. It is usually crimson red in color and exquisitly painful to the slightest touch. It's also usually found on the extremities; some people get it on their face as well. For me, I have a " Shadow " of the rash on my hands when I'm in a flare, such as now. I hope this helps explains a few things for you. We're not all text book cases. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 I try not to take meds. But there are times I must Liz ************************************** Get a sneak peak of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 I try not to take meds. But there are times I must Liz ************************************** Get a sneak peak of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 I try not to take meds. But there are times I must Liz ************************************** Get a sneak peak of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 According to the Still's Web site, " What is Still's Disease? Still's Disease is a form of arthritis that is characterized by high spiking fevers and evanescent (transient) salmon-colored rash " I know from the comments on this board that many have a painful or itchy rash. However, mine has never been painful to the touch. It has always been the classic salmon colored flat rash as noted above. Originally mine was on my arms and legs and would come and go. However, after I got to the big time fever stage of the disease, it settled on my upper chest and now has spots over to my shoulder (only the left side, interestingly) It would come and go, but now is always present and sometimes brightens to a " glow in the dark " type, but still the salmon color. One other thing I noted for me is that the rash does seem to increase in intensity at the times of day where I used to get my fevers when I have been in full flare. (still never itches, just present) My fevers have always been 2 cycle, about 6PM- 8PM and 2AM-4AM. Luckily the 102-104 fevers have not hit me in quite awhile. I think that is one of the dragon's arsenal that I always hated. There is nothing much more disgusting than waking up in a pool of sweat on the sheets.(of course the joint pain and my enlarged spleen come in a close second) Just as in RA and other related diseases, the joint damage can creep up on you if it is not controlled and once the damage is done, it can not be undone. So, be cautious and do your reasearch, but listen closely to your Rheumy. As you can see and it has been mentioned many times on this board, we Still's " fighters " run a broad range of signs and symptoms that are usually similar but not always identical. I am very glad I do not have Ellen's variety of rash and just have to look at mine, but not feel it.(mine is kind of ugly looking) Tom from PA > > Hi , > > > As for the lesion, it is a reference to the rash that is typically > one of the signs of Stills Disease. It is usually crimson red in > color and exquisitly painful to the slightest touch. It's also > usually found on the extremities; some people get it on their face as > well. For me, I have a " Shadow " of the rash on my hands when I'm in > a flare, such as now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 Thank you all for the responses. I do get the rash (worse with fevers), but when I read lesions (sounds like sores to me) and they looked different then mine I was confused. Mine look like the one's on the main Still's page. I am a little nervous to go on the meds because I have already been on these which did not work: Predinose Mx Enbrel Humera Naproxen This new doctor wants to put me on: Meloxidan Mx Orencia or Remicade Another reason for not going on the meds...they are expensive. I am a stay at home mom to 5 kids ages 16-2. So we only have my husbands paycheck...which isn't much. drwooly2006 wrote: According to the Still's Web site, " What is Still's Disease? Still's Disease is a form of arthritis that is characterized by high spiking fevers and evanescent (transient) salmon-colored rash " I know from the comments on this board that many have a painful or itchy rash. However, mine has never been painful to the touch. It has always been the classic salmon colored flat rash as noted above. Originally mine was on my arms and legs and would come and go. However, after I got to the big time fever stage of the disease, it settled on my upper chest and now has spots over to my shoulder (only the left side, interestingly) It would come and go, but now is always present and sometimes brightens to a " glow in the dark " type, but still the salmon color. One other thing I noted for me is that the rash does seem to increase in intensity at the times of day where I used to get my fevers when I have been in full flare. (still never itches, just present) My fevers have always been 2 cycle, about 6PM- 8PM and 2AM-4AM. Luckily the 102-104 fevers have not hit me in quite awhile. I think that is one of the dragon's arsenal that I always hated. There is nothing much more disgusting than waking up in a pool of sweat on the sheets.(of course the joint pain and my enlarged spleen come in a close second) Just as in RA and other related diseases, the joint damage can creep up on you if it is not controlled and once the damage is done, it can not be undone. So, be cautious and do your reasearch, but listen closely to your Rheumy. As you can see and it has been mentioned many times on this board, we Still's " fighters " run a broad range of signs and symptoms that are usually similar but not always identical. I am very glad I do not have Ellen's variety of rash and just have to look at mine, but not feel it.(mine is kind of ugly looking) Tom from PA > > Hi , > > > As for the lesion, it is a reference to the rash that is typically > one of the signs of Stills Disease. It is usually crimson red in > color and exquisitly painful to the slightest touch. It's also > usually found on the extremities; some people get it on their face as > well. For me, I have a " Shadow " of the rash on my hands when I'm in > a flare, such as now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 Thank you all for the responses. I do get the rash (worse with fevers), but when I read lesions (sounds like sores to me) and they looked different then mine I was confused. Mine look like the one's on the main Still's page. I am a little nervous to go on the meds because I have already been on these which did not work: Predinose Mx Enbrel Humera Naproxen This new doctor wants to put me on: Meloxidan Mx Orencia or Remicade Another reason for not going on the meds...they are expensive. I am a stay at home mom to 5 kids ages 16-2. So we only have my husbands paycheck...which isn't much. drwooly2006 wrote: According to the Still's Web site, " What is Still's Disease? Still's Disease is a form of arthritis that is characterized by high spiking fevers and evanescent (transient) salmon-colored rash " I know from the comments on this board that many have a painful or itchy rash. However, mine has never been painful to the touch. It has always been the classic salmon colored flat rash as noted above. Originally mine was on my arms and legs and would come and go. However, after I got to the big time fever stage of the disease, it settled on my upper chest and now has spots over to my shoulder (only the left side, interestingly) It would come and go, but now is always present and sometimes brightens to a " glow in the dark " type, but still the salmon color. One other thing I noted for me is that the rash does seem to increase in intensity at the times of day where I used to get my fevers when I have been in full flare. (still never itches, just present) My fevers have always been 2 cycle, about 6PM- 8PM and 2AM-4AM. Luckily the 102-104 fevers have not hit me in quite awhile. I think that is one of the dragon's arsenal that I always hated. There is nothing much more disgusting than waking up in a pool of sweat on the sheets.(of course the joint pain and my enlarged spleen come in a close second) Just as in RA and other related diseases, the joint damage can creep up on you if it is not controlled and once the damage is done, it can not be undone. So, be cautious and do your reasearch, but listen closely to your Rheumy. As you can see and it has been mentioned many times on this board, we Still's " fighters " run a broad range of signs and symptoms that are usually similar but not always identical. I am very glad I do not have Ellen's variety of rash and just have to look at mine, but not feel it.(mine is kind of ugly looking) Tom from PA > > Hi , > > > As for the lesion, it is a reference to the rash that is typically > one of the signs of Stills Disease. It is usually crimson red in > color and exquisitly painful to the slightest touch. It's also > usually found on the extremities; some people get it on their face as > well. For me, I have a " Shadow " of the rash on my hands when I'm in > a flare, such as now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 Thank you all for the responses. I do get the rash (worse with fevers), but when I read lesions (sounds like sores to me) and they looked different then mine I was confused. Mine look like the one's on the main Still's page. I am a little nervous to go on the meds because I have already been on these which did not work: Predinose Mx Enbrel Humera Naproxen This new doctor wants to put me on: Meloxidan Mx Orencia or Remicade Another reason for not going on the meds...they are expensive. I am a stay at home mom to 5 kids ages 16-2. So we only have my husbands paycheck...which isn't much. drwooly2006 wrote: According to the Still's Web site, " What is Still's Disease? Still's Disease is a form of arthritis that is characterized by high spiking fevers and evanescent (transient) salmon-colored rash " I know from the comments on this board that many have a painful or itchy rash. However, mine has never been painful to the touch. It has always been the classic salmon colored flat rash as noted above. Originally mine was on my arms and legs and would come and go. However, after I got to the big time fever stage of the disease, it settled on my upper chest and now has spots over to my shoulder (only the left side, interestingly) It would come and go, but now is always present and sometimes brightens to a " glow in the dark " type, but still the salmon color. One other thing I noted for me is that the rash does seem to increase in intensity at the times of day where I used to get my fevers when I have been in full flare. (still never itches, just present) My fevers have always been 2 cycle, about 6PM- 8PM and 2AM-4AM. Luckily the 102-104 fevers have not hit me in quite awhile. I think that is one of the dragon's arsenal that I always hated. There is nothing much more disgusting than waking up in a pool of sweat on the sheets.(of course the joint pain and my enlarged spleen come in a close second) Just as in RA and other related diseases, the joint damage can creep up on you if it is not controlled and once the damage is done, it can not be undone. So, be cautious and do your reasearch, but listen closely to your Rheumy. As you can see and it has been mentioned many times on this board, we Still's " fighters " run a broad range of signs and symptoms that are usually similar but not always identical. I am very glad I do not have Ellen's variety of rash and just have to look at mine, but not feel it.(mine is kind of ugly looking) Tom from PA > > Hi , > > > As for the lesion, it is a reference to the rash that is typically > one of the signs of Stills Disease. It is usually crimson red in > color and exquisitly painful to the slightest touch. It's also > usually found on the extremities; some people get it on their face as > well. For me, I have a " Shadow " of the rash on my hands when I'm in > a flare, such as now. > > Quote Link to comment Share on other sites More sharing options...
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