Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Hugs to you, Jane, Casting and bracing are not effective treatment for kids with congenital malformations of the spine (ie, hemivertebrae, unilateral bar, unsegmented bar, etc.). If the doc is referring to congenital scoliosis in Grace's case meaning she's had scoliosis since birth, that may be a different story. Does she have any bone malformations in the spine? If yes, then casting/bracing wouldn't likely be helpful. You can't externally support a spine that wasn't formed correctly in the first place. If the docs are talking surgery, what are they suggesting specifically? I've read several new stories lately and I'm not sure if I know Grace's full story yet (sorry to be a PITA about this). Her birth defect was very serious. I'm sure her structural stability is affected by this. Do you know if she has the muscles she should? Does her diaphragm function correctly? All of these things, and more, should be addressed before deciding any treatment. There are several treatment options out there (unlike several years ago when fusion was the only treatment). Getting multiple opinions for kids like Grace is very important. If you ask the same questions to multiple surgeons, you will get a variation of each question. No two surgeons are alike, as no two kids with scoliosis are alike. Each requires unique care, and should be treated by someone who has extensive experience successfully treating children with similar conditions. Lots of rambling, but I hope some makes sense. Good luck! Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Jane,I'm not sure what you're asking, so I'm going to start with the basics. Some surgeons are great and have the latest information, others drastically misinform (as was the case with the first two we saw). So, forgive me if you know any/all of this. When a child is found to have a curve of the spine, the first step is usually a diagnostic x-ray. This shows the actual curve - usually a C curve or an S curve that likely started as a C and balanced itself with a compensatory curve at the top or bottom so that the child was upright. The next crucial step is an MRI to see each vertebrae and the position of the spinal cord. This is usually done sedated or under general anesthesia for infants/toddlers. This is the only way to know if the child has congenital scoliosis or idiopathic scoliosis. From there, if it is congenital, there is likely a surgical step that comes next because no bracing or other treatment can help, as far as I understand (speaking from what I've read only, since our son does not have congenital - even though that was his official diagnosis on paper - we were told, " Because of his age. " This is incorrect.) If it is idiopathic, there is no reason for it. This means no biological reason for the curve having formed - no wedge vertebrae, no tethered cord, no tumors or associated malformations. There is " just " a curve with no explanation. This is when close monitoring needs to begin - immediately, and when you need to know the RVAD measurement. Basically, the ribs should go into the spine horizontally and they do not in kids with scoliosis. They come in at an angle. This Rib Vertical Angle Deference is the angle at which the ribs intersect with the spine. The larger this number (Jack's was 45°) the more likely it is to be a progressive curve. In this case, the curve will continue to get worse and the child will likely end up in surgery down the road with internal support systems like growth rods or titanium ribs. There is also a population of kids with idiopathic scoliosis who have an underlying connective tissue disorder - a genetic cause for the scoliosis. One surgeon we talked to believed ALL children with scoliosis have some kind of genetic reason and they have isolated that gene, but no screenings are in place yet. There is a percentage of cases of idiopathic (unknown cause) scoliosis that are deemed resolving - they will get better as the child grows. However, again, the RVAD is usually a good indicator of whether or not it is progressive or resolving. This is why very close monitoring and frequent x-rays by a qualified early treatment surgeon are imperative. There have been several babies over the last year or so since I found this group that learned their child had resolving scoliosis and that they would not require any treatment. So, it does happen. However, precious time can be lost by these doctors who just assume ALL infantile scoliosis is resolving. We know it is not with great certainty and this " watch and wait " prognosis makes us lose this precious window of time for early treatment. If a child was set to wait and watch and the curve was low with a low RVAD, I would wait no longer than 4-6 weeks between x-rays. Things progress very quickly sometimes and growth spurts trigger a lot of change. However, growth spurts also can trigger POSITIVE change. This is the early treatment method that Dr/Miss Mehta developed and perfected. When you interrupt the rotation of the spine and the rapid curving of the spine, you can almost redirect the growth into upward, straight growth. Through this method, the infants/toddlers are suspended in gentle traction. They are given muscle relaxers under general anesthesia, and their airways are protected by a breathing tube. A properly trained, qualified surgeon - with the right, pediatric frame to do so, gently manipulates the spine back toward a straighter position then rapidly casts it in plaster gauze and fiberglass for stability. After applying the cast, a large expansion window is cut out of the front to prevent chest wall deformity and allow for expansion of the abdomen and ribcage. A corresponding window is cut into the back to encourage the spine to uncoil and stop causing the rib protrusion and shifting that happens so quickly and causes the spine to want to bounce back. Miss Mehta's method is the only one that not only addresses the curve, but also the rotation - I believe the largest piece of the puzzle, as well as kyphosis (curving out) and lordosis (flattening or curving in) of the spine. As the child grows, in this rapid period of growth between infancy and toddlerhood, they will grow into this shape and the cast will harness that growth and cause the spine to redirect upward. The surgeon will remove and re-cast, gaining slight improvement each time so that the process is gradual and as gentle as possible. There are children for whom casting does not cure their curve. Many of these kids have an underlying connective tissue disorder, or, for some reason have a rigid spine that does not respond. Some were misinformed early on and missed that precious window of time. However, even in these cases, casting is the only thing that will allow for lung and heart function to maintain normal levels - as much as possible. When we weren't sure casting would work for Jack, we were told that without it his curve would be in the hundreds, compressing his heart and lungs. Even if casting did not cure him, we were told it was imperative to lift the spine off his organs to let him breathe and let his heart function properly. And, then, when he was older, he would have surgery to stabilize his spine from the inside. Thankfully, we were able to continue the process and 's curve is now down to 38° - half of where he started - and he is down to 22° in this fourth cast. We were told at this last visit that he would never need growth rods or VEPTR implants. Without this group, and the moms here, and ISOP, we would be waiting for a surgery date. And, potentially, another 6 months later - and 6 months after that - and every 3-4 years he would need to have the instrumentation replace entirely. The precious kids on this group who have had to endure so much - instruments breaking - ribs breaking - being far from home or far from the hospital and having to wait several days to get into the operating room for repairs! It's just surreal to me. I am SO grateful for this method of treatment and cannot imagine all that the kids go through on a surgical level. I am sad that their children have had to suffer so much, but so grateful for their sacrifice so that does not have to face that in his life. The best thing you can do is have a child evaluated by a properly trained physician - which can be found in the database here. You can get assistance with travel from charity airlines and from Shriner's Temples, as well as Mc House. Even if the doctor tells you the same thing that you have already heard, it is imperative to find someone who really, truly knows early intervention. Hope that helps! Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Jane Yes it is true that some kids with congenital cannot be fully corrected with casting but it can slow the progression and give them the precious growing time they need. My son has chiari malformation along with scoliosis. He is doing fantastic and is down to 4.2degrees after three casts and braces. The doctors are not sure if they are connected to each other but because of this it could be congenital. His curve was over 40degrees when we started casting so I would say it is possible to gain correction with congenital scoliosis. He also progressed rapidly, his forst xray showed 24degrees hen two and a half months later it was 37degrees. Hope this helps answer your question. Rochelle mom to Devyn 2 and 1/2 Infantile Scoliosis, Chiari 1 > > Hi. We are taking our twins to the Ortho. today. One of > the, , > > has a 30 degree curve and the other, Olivia, is being X-rayed to > see if > > she has scoliosis. They are 15 months. > > > > Our Ortho. is probably going to recommend a brace. With the help of > > this group's members, we've been made aware of the Mehta method > casting > > and really are leaning toward meeting with Dr. Kishan of Loma > Med. > > Ctr. in CA. to have him look at and possibly cast her > (Mehta). > > > > Hubby and I want to know the following: > > > > If anyone has had a less-than-positive experience with the Mehta > casting > > and > > If anyone has had the experience that after the casting time > period, the > > child's curve gets worse or returns to it's original degree of > > curvature. > > > > We don't want to invest a lot of time and money into casting if > > 's curve will come back 2 years after the casts come off. > We > > also want to be sure that we are investing the time efficiently to > get > > 's curve under control or improved. I'm sure as parents of > > little ones, you all know what I mean. We have talked to several > > people, now who have had terrific experiences, but now we want to > know > > what, if any, " cons " there are! Thanks so much. You all have helped > us > > so much in one week. I'm glad we found your group. [] > > > > Karns > > Mom to (30 degrees) and Olivia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Sandi, my hats off to you. You are so well informed. Ethelyn " *\\o/* San *\\o/* " wrote: Jane,I'm not sure what you're asking, so I'm going to start with the basics. Some surgeons are great and have the latest information, others drastically misinform (as was the case with the first two we saw). So, forgive me if you know any/all of this. When a child is found to have a curve of the spine, the first step is usually a diagnostic x-ray. This shows the actual curve - usually a C curve or an S curve that likely started as a C and balanced itself with a compensatory curve at the top or bottom so that the child was upright. The next crucial step is an MRI to see each vertebrae and the position of the spinal cord. This is usually done sedated or under general anesthesia for infants/toddlers. This is the only way to know if the child has congenital scoliosis or idiopathic scoliosis. From there, if it is congenital, there is likely a surgical step that comes next because no bracing or other treatment can help, as far as I understand (speaking from what I've read only, since our son does not have congenital - even though that was his official diagnosis on paper - we were told, " Because of his age. " This is incorrect.) If it is idiopathic, there is no reason for it. This means no biological reason for the curve having formed - no wedge vertebrae, no tethered cord, no tumors or associated malformations. There is " just " a curve with no explanation. This is when close monitoring needs to begin - immediately, and when you need to know the RVAD measurement. Basically, the ribs should go into the spine horizontally and they do not in kids with scoliosis. They come in at an angle. This Rib Vertical Angle Deference is the angle at which the ribs intersect with the spine. The larger this number (Jack's was 45°) the more likely it is to be a progressive curve. In this case, the curve will continue to get worse and the child will likely end up in surgery down the road with internal support systems like growth rods or titanium ribs. There is also a population of kids with idiopathic scoliosis who have an underlying connective tissue disorder - a genetic cause for the scoliosis. One surgeon we talked to believed ALL children with scoliosis have some kind of genetic reason and they have isolated that gene, but no screenings are in place yet. There is a percentage of cases of idiopathic (unknown cause) scoliosis that are deemed resolving - they will get better as the child grows. However, again, the RVAD is usually a good indicator of whether or not it is progressive or resolving. This is why very close monitoring and frequent x-rays by a qualified early treatment surgeon are imperative. There have been several babies over the last year or so since I found this group that learned their child had resolving scoliosis and that they would not require any treatment. So, it does happen. However, precious time can be lost by these doctors who just assume ALL infantile scoliosis is resolving. We know it is not with great certainty and this " watch and wait " prognosis makes us lose this precious window of time for early treatment. If a child was set to wait and watch and the curve was low with a low RVAD, I would wait no longer than 4-6 weeks between x-rays. Things progress very quickly sometimes and growth spurts trigger a lot of change. However, growth spurts also can trigger POSITIVE change. This is the early treatment method that Dr/Miss Mehta developed and perfected. When you interrupt the rotation of the spine and the rapid curving of the spine, you can almost redirect the growth into upward, straight growth. Through this method, the infants/toddlers are suspended in gentle traction. They are given muscle relaxers under general anesthesia, and their airways are protected by a breathing tube. A properly trained, qualified surgeon - with the right, pediatric frame to do so, gently manipulates the spine back toward a straighter position then rapidly casts it in plaster gauze and fiberglass for stability. After applying the cast, a large expansion window is cut out of the front to prevent chest wall deformity and allow for expansion of the abdomen and ribcage. A corresponding window is cut into the back to encourage the spine to uncoil and stop causing the rib protrusion and shifting that happens so quickly and causes the spine to want to bounce back. Miss Mehta's method is the only one that not only addresses the curve, but also the rotation - I believe the largest piece of the puzzle, as well as kyphosis (curving out) and lordosis (flattening or curving in) of the spine. As the child grows, in this rapid period of growth between infancy and toddlerhood, they will grow into this shape and the cast will harness that growth and cause the spine to redirect upward. The surgeon will remove and re-cast, gaining slight improvement each time so that the process is gradual and as gentle as possible. There are children for whom casting does not cure their curve. Many of these kids have an underlying connective tissue disorder, or, for some reason have a rigid spine that does not respond. Some were misinformed early on and missed that precious window of time. However, even in these cases, casting is the only thing that will allow for lung and heart function to maintain normal levels - as much as possible. When we weren't sure casting would work for Jack, we were told that without it his curve would be in the hundreds, compressing his heart and lungs. Even if casting did not cure him, we were told it was imperative to lift the spine off his organs to let him breathe and let his heart function properly. And, then, when he was older, he would have surgery to stabilize his spine from the inside. Thankfully, we were able to continue the process and 's curve is now down to 38° - half of where he started - and he is down to 22° in this fourth cast. We were told at this last visit that he would never need growth rods or VEPTR implants. Without this group, and the moms here, and ISOP, we would be waiting for a surgery date. And, potentially, another 6 months later - and 6 months after that - and every 3-4 years he would need to have the instrumentation replace entirely. The precious kids on this group who have had to endure so much - instruments breaking - ribs breaking - being far from home or far from the hospital and having to wait several days to get into the operating room for repairs! It's just surreal to me. I am SO grateful for this method of treatment and cannot imagine all that the kids go through on a surgical level. I am sad that their children have had to suffer so much, but so grateful for their sacrifice so that does not have to face that in his life. The best thing you can do is have a child evaluated by a properly trained physician - which can be found in the database here. You can get assistance with travel from charity airlines and from Shriner's Temples, as well as Mc House. Even if the doctor tells you the same thing that you have already heard, it is imperative to find someone who really, truly knows early intervention. Hope that helps! Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Thank you for the list of information. Most of it I had read from other sites. I don't agree with the statement that an MRI " is the only way to know if the child has congenital scoliosis or idiopathic scoliosis " . We know Grace's scoliosis is due to a partial vertabrae, therefore that makes it Congenital according to the definitions I have read off of many sites. This was definately diagnosed via an x-ray only as her MRI isn't until next week. I would agree that in " some " cases that is probably true, but not all. Anyhow, no one has really answered the question I was asking. The direct question is... Are most of the kids on this site diagnosed with Idiopathic Scoliosis? And is that the reason for the feeling of " anti-surgery " and a push to use casting or bracing that I am seeing from the members here? They are not planning on using a rod or anything for Grace. It is just a fusion they are planning. I can't seem to get a straight answer from anyone (not meaning here) on what that might entail as I hear there are a number of various ways that the procedure is performed. So, that is why I searched and eventually found this site, but if the majority of kids here aren't in similar situations as Grace, then I may need to continue to search and find a support site that is more familiar with the typical treatments for congenital scoliosis rather than idiopathic. I hope that all makes more sense. Jane and Gracie " *\\o/* San *\\o/* " wrote: Jane,I'm not sure what you're asking, so I'm going to start with the basics. Some surgeons are great and have the latest information, others drastically misinform (as was the case with the first two we saw). So, forgive me if you know any/all of this. When a child is found to have a curve of the spine, the first step is usually a diagnostic x-ray. This shows the actual curve - usually a C curve or an S curve that likely started as a C and balanced itself with a compensatory curve at the top or bottom so that the child was upright. The next crucial step is an MRI to see each vertebrae and the position of the spinal cord. This is usually done sedated or under general anesthesia for infants/toddlers. This is the only way to know if the child has congenital scoliosis or idiopathic scoliosis. From there, if it is congenital, there is likely a surgical step that comes next because no bracing or other treatment can help, as far as I understand (speaking from what I've read only, since our son does not have congenital - even though that was his official diagnosis on paper - we were told, " Because of his age. " This is incorrect.) If it is idiopathic, there is no reason for it. This means no biological reason for the curve having formed - no wedge vertebrae, no tethered cord, no tumors or associated malformations. There is " just " a curve with no explanation. This is when close monitoring needs to begin - immediately, and when you need to know the RVAD measurement. Basically, the ribs should go into the spine horizontally and they do not in kids with scoliosis. They come in at an angle. This Rib Vertical Angle Deference is the angle at which the ribs intersect with the spine. The larger this number (Jack's was 45°) the more likely it is to be a progressive curve. In this case, the curve will continue to get worse and the child will likely end up in surgery down the road with internal support systems like growth rods or titanium ribs. There is also a population of kids with idiopathic scoliosis who have an underlying connective tissue disorder - a genetic cause for the scoliosis. One surgeon we talked to believed ALL children with scoliosis have some kind of genetic reason and they have isolated that gene, but no screenings are in place yet. There is a percentage of cases of idiopathic (unknown cause) scoliosis that are deemed resolving - they will get better as the child grows. However, again, the RVAD is usually a good indicator of whether or not it is progressive or resolving. This is why very close monitoring and frequent x-rays by a qualified early treatment surgeon are imperative. There have been several babies over the last year or so since I found this group that learned their child had resolving scoliosis and that they would not require any treatment. So, it does happen. However, precious time can be lost by these doctors who just assume ALL infantile scoliosis is resolving. We know it is not with great certainty and this " watch and wait " prognosis makes us lose this precious window of time for early treatment. If a child was set to wait and watch and the curve was low with a low RVAD, I would wait no longer than 4-6 weeks between x-rays. Things progress very quickly sometimes and growth spurts trigger a lot of change. However, growth spurts also can trigger POSITIVE change. This is the early treatment method that Dr/Miss Mehta developed and perfected. When you interrupt the rotation of the spine and the rapid curving of the spine, you can almost redirect the growth into upward, straight growth. Through this method, the infants/toddlers are suspended in gentle traction. They are given muscle relaxers under general anesthesia, and their airways are protected by a breathing tube. A properly trained, qualified surgeon - with the right, pediatric frame to do so, gently manipulates the spine back toward a straighter position then rapidly casts it in plaster gauze and fiberglass for stability. After applying the cast, a large expansion window is cut out of the front to prevent chest wall deformity and allow for expansion of the abdomen and ribcage. A corresponding window is cut into the back to encourage the spine to uncoil and stop causing the rib protrusion and shifting that happens so quickly and causes the spine to want to bounce back. Miss Mehta's method is the only one that not only addresses the curve, but also the rotation - I believe the largest piece of the puzzle, as well as kyphosis (curving out) and lordosis (flattening or curving in) of the spine. As the child grows, in this rapid period of growth between infancy and toddlerhood, they will grow into this shape and the cast will harness that growth and cause the spine to redirect upward. The surgeon will remove and re-cast, gaining slight improvement each time so that the process is gradual and as gentle as possible. There are children for whom casting does not cure their curve. Many of these kids have an underlying connective tissue disorder, or, for some reason have a rigid spine that does not respond. Some were misinformed early on and missed that precious window of time. However, even in these cases, casting is the only thing that will allow for lung and heart function to maintain normal levels - as much as possible. When we weren't sure casting would work for Jack, we were told that without it his curve would be in the hundreds, compressing his heart and lungs. Even if casting did not cure him, we were told it was imperative to lift the spine off his organs to let him breathe and let his heart function properly. And, then, when he was older, he would have surgery to stabilize his spine from the inside. Thankfully, we were able to continue the process and 's curve is now down to 38° - half of where he started - and he is down to 22° in this fourth cast. We were told at this last visit that he would never need growth rods or VEPTR implants. Without this group, and the moms here, and ISOP, we would be waiting for a surgery date. And, potentially, another 6 months later - and 6 months after that - and every 3-4 years he would need to have the instrumentation replace entirely. The precious kids on this group who have had to endure so much - instruments breaking - ribs breaking - being far from home or far from the hospital and having to wait several days to get into the operating room for repairs! It's just surreal to me. I am SO grateful for this method of treatment and cannot imagine all that the kids go through on a surgical level. I am sad that their children have had to suffer so much, but so grateful for their sacrifice so that does not have to face that in his life. The best thing you can do is have a child evaluated by a properly trained physician - which can be found in the database here. You can get assistance with travel from charity airlines and from Shriner's Temples, as well as Mc House. Even if the doctor tells you the same thing that you have already heard, it is imperative to find someone who really, truly knows early intervention. Hope that helps! Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Are most of the kids on this site diagnosed with Idiopathic Scoliosis? And is that the reason for the feeling of " anti-surgery " and a push to use casting or bracing that I am seeing from the members here? This is a casting group. That's why. There's no push - there is advocacy for early intervention and casting. The title of this group is: Infantile Scoliosis - C.A.S.T. - Casts as an Alternative for Scoliosis Treatment. I'm not sure if you got the impression it was something else, but this is what we " do " - there are other moms here who have children with congenital and still hang out, though. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Jane, From what I know I will answer your question..........I am pretty sure the majority of this group is made up of Moms with children with Idiopathic Scoliosis. If I am wrong I am sure others will chime in. I am also sure there are some with congenital scoliosis too. And yes, at least for me, I was trying to avoid surgery. This group is a great support for either idiopathic or congenital, but I totally understand you wanting ot find a group with similarities to Grace's. Hope this helps some. Tasha Jane Harvey wrote: Thank you for the list of information. Most of it I had read from other sites. I don't agree with the statement that an MRI " is the only way to know if the child has congenital scoliosis or idiopathic scoliosis " . We know Grace's scoliosis is due to a partial vertabrae, therefore that makes it Congenital according to the definitions I have read off of many sites. This was definately diagnosed via an x-ray only as her MRI isn't until next week. I would agree that in " some " cases that is probably true, but not all. Anyhow, no one has really answered the question I was asking. The direct question is... Are most of the kids on this site diagnosed with Idiopathic Scoliosis? And is that the reason for the feeling of " anti-surgery " and a push to use casting or bracing that I am seeing from the members here? They are not planning on using a rod or anything for Grace. It is just a fusion they are planning. I can't seem to get a straight answer from anyone (not meaning here) on what that might entail as I hear there are a number of various ways that the procedure is performed. So, that is why I searched and eventually found this site, but if the majority of kids here aren't in similar situations as Grace, then I may need to continue to search and find a support site that is more familiar with the typical treatments for congenital scoliosis rather than idiopathic. I hope that all makes more sense. Jane and Gracie " *\\o/* San *\\o/* " wrote: Jane,I'm not sure what you're asking, so I'm going to start with the basics. Some surgeons are great and have the latest information, others drastically misinform (as was the case with the first two we saw). So, forgive me if you know any/all of this. When a child is found to have a curve of the spine, the first step is usually a diagnostic x-ray. This shows the actual curve - usually a C curve or an S curve that likely started as a C and balanced itself with a compensatory curve at the top or bottom so that the child was upright. The next crucial step is an MRI to see each vertebrae and the position of the spinal cord. This is usually done sedated or under general anesthesia for infants/toddlers. This is the only way to know if the child has congenital scoliosis or idiopathic scoliosis. From there, if it is congenital, there is likely a surgical step that comes next because no bracing or other treatment can help, as far as I understand (speaking from what I've read only, since our son does not have congenital - even though that was his official diagnosis on paper - we were told, " Because of his age. " This is incorrect.) If it is idiopathic, there is no reason for it. This means no biological reason for the curve having formed - no wedge vertebrae, no tethered cord, no tumors or associated malformations. There is " just " a curve with no explanation. This is when close monitoring needs to begin - immediately, and when you need to know the RVAD measurement. Basically, the ribs should go into the spine horizontally and they do not in kids with scoliosis. They come in at an angle. This Rib Vertical Angle Deference is the angle at which the ribs intersect with the spine. The larger this number (Jack's was 45°) the more likely it is to be a progressive curve. In this case, the curve will continue to get worse and the child will likely end up in surgery down the road with internal support systems like growth rods or titanium ribs. There is also a population of kids with idiopathic scoliosis who have an underlying connective tissue disorder - a genetic cause for the scoliosis. One surgeon we talked to believed ALL children with scoliosis have some kind of genetic reason and they have isolated that gene, but no screenings are in place yet. There is a percentage of cases of idiopathic (unknown cause) scoliosis that are deemed resolving - they will get better as the child grows. However, again, the RVAD is usually a good indicator of whether or not it is progressive or resolving. This is why very close monitoring and frequent x-rays by a qualified early treatment surgeon are imperative. There have been several babies over the last year or so since I found this group that learned their child had resolving scoliosis and that they would not require any treatment. So, it does happen. However, precious time can be lost by these doctors who just assume ALL infantile scoliosis is resolving. We know it is not with great certainty and this " watch and wait " prognosis makes us lose this precious window of time for early treatment. If a child was set to wait and watch and the curve was low with a low RVAD, I would wait no longer than 4-6 weeks between x-rays. Things progress very quickly sometimes and growth spurts trigger a lot of change. However, growth spurts also can trigger POSITIVE change. This is the early treatment method that Dr/Miss Mehta developed and perfected. When you interrupt the rotation of the spine and the rapid curving of the spine, you can almost redirect the growth into upward, straight growth. Through this method, the infants/toddlers are suspended in gentle traction. They are given muscle relaxers under general anesthesia, and their airways are protected by a breathing tube. A properly trained, qualified surgeon - with the right, pediatric frame to do so, gently manipulates the spine back toward a straighter position then rapidly casts it in plaster gauze and fiberglass for stability. After applying the cast, a large expansion window is cut out of the front to prevent chest wall deformity and allow for expansion of the abdomen and ribcage. A corresponding window is cut into the back to encourage the spine to uncoil and stop causing the rib protrusion and shifting that happens so quickly and causes the spine to want to bounce back. Miss Mehta's method is the only one that not only addresses the curve, but also the rotation - I believe the largest piece of the puzzle, as well as kyphosis (curving out) and lordosis (flattening or curving in) of the spine. As the child grows, in this rapid period of growth between infancy and toddlerhood, they will grow into this shape and the cast will harness that growth and cause the spine to redirect upward. The surgeon will remove and re-cast, gaining slight improvement each time so that the process is gradual and as gentle as possible. There are children for whom casting does not cure their curve. Many of these kids have an underlying connective tissue disorder, or, for some reason have a rigid spine that does not respond. Some were misinformed early on and missed that precious window of time. However, even in these cases, casting is the only thing that will allow for lung and heart function to maintain normal levels - as much as possible. When we weren't sure casting would work for Jack, we were told that without it his curve would be in the hundreds, compressing his heart and lungs. Even if casting did not cure him, we were told it was imperative to lift the spine off his organs to let him breathe and let his heart function properly. And, then, when he was older, he would have surgery to stabilize his spine from the inside. Thankfully, we were able to continue the process and 's curve is now down to 38° - half of where he started - and he is down to 22° in this fourth cast. We were told at this last visit that he would never need growth rods or VEPTR implants. Without this group, and the moms here, and ISOP, we would be waiting for a surgery date. And, potentially, another 6 months later - and 6 months after that - and every 3-4 years he would need to have the instrumentation replace entirely. The precious kids on this group who have had to endure so much - instruments breaking - ribs breaking - being far from home or far from the hospital and having to wait several days to get into the operating room for repairs! It's just surreal to me. I am SO grateful for this method of treatment and cannot imagine all that the kids go through on a surgical level. I am sad that their children have had to suffer so much, but so grateful for their sacrifice so that does not have to face that in his life. The best thing you can do is have a child evaluated by a properly trained physician - which can be found in the database here. You can get assistance with travel from charity airlines and from Shriner's Temples, as well as Mc House. Even if the doctor tells you the same thing that you have already heard, it is imperative to find someone who really, truly knows early intervention. Hope that helps! Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 hi jane, yes, most of the kids on this site are diagnosed with infantile idiopathic scoliosis. there are some parents whose children have been diagnosed with congenital that stay on this site because there were very few options out there on the internet only a couple of years ago. they stay because they are friends and help newcomers like you. my suggestions would be to go to these groups for assistance in figuring out the options for congenital scoliosis: http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/?yguid=96409799 http://veptr.com/megabbs/category-view.asp i hope that helps and good luck finding the best option for gracie. my best, deshea _______________________________________________________________________________ mom to lucas (6 yrs old) and ruby (3 yrs old and a handful!) north of boston, ma lucas was diagnosed with infantile scoliosis at 18 mos 68o/45o spinal detethering due to a tight/fatty filum at 22 mos tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma serial plaster casting from 2 1/2 until 4 1/2 yrs old at shriners in erie, pa now in a spinecor brace at 24o/18o from montreal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Thank you. That is what I didn't understand. I was looking for something more general I guess. I am part of a great group of parents of kids born with an Omphalocele and even though some push for certain " repair " options, everyone realizes that no 2 " O's " are the same and the other " anomalies " that each child has are different as well therefore, even if the plan is to have one procedure done, more often than not, it ends up not being possible for that child. So, it really wouldn't work in that situation to say have a group only for the " paint and wait " procedure. I think I'll move on as I really don't think casting is going to be an option for Grace. If she ends up with that procedure, then I may come back. I appreciate information I have received. Again, thank you and good luck and God bless to all of you and your little ones. Jane and Gracie " *\\o/* San *\\o/* " wrote: Are most of the kids on this site diagnosed with Idiopathic Scoliosis? And is that the reason for the feeling of " anti-surgery " and a push to use casting or bracing that I am seeing from the members here? This is a casting group. That's why. There's no push - there is advocacy for early intervention and casting. The title of this group is: Infantile Scoliosis - C.A.S.T. - Casts as an Alternative for Scoliosis Treatment. I'm not sure if you got the impression it was something else, but this is what we " do " - there are other moms here who have children with congenital and still hang out, though. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Thank you for the links. I do appreciate the help. Jane " Deshea L. " wrote: hi jane, yes, most of the kids on this site are diagnosed with infantile idiopathic scoliosis. there are some parents whose children have been diagnosed with congenital that stay on this site because there were very few options out there on the internet only a couple of years ago. they stay because they are friends and help newcomers like you. my suggestions would be to go to these groups for assistance in figuring out the options for congenital scoliosis: http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/?yguid=96409799 http://veptr.com/megabbs/category-view.asp i hope that helps and good luck finding the best option for gracie. my best, deshea __________________________________________________________ mom to lucas (6 yrs old) and ruby (3 yrs old and a handful!) north of boston, ma lucas was diagnosed with infantile scoliosis at 18 mos 68o/45o spinal detethering due to a tight/fatty filum at 22 mos tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma serial plaster casting from 2 1/2 until 4 1/2 yrs old at shriners in erie, pa now in a spinecor brace at 24o/18o from montreal. Jane --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Thank you Tasha Fontenot wrote: Jane, From what I know I will answer your question..........I am pretty sure the majority of this group is made up of Moms with children with Idiopathic Scoliosis. If I am wrong I am sure others will chime in. I am also sure there are some with congenital scoliosis too. And yes, at least for me, I was trying to avoid surgery. This group is a great support for either idiopathic or congenital, but I totally understand you wanting ot find a group with similarities to Grace's. Hope this helps some. Tasha Jane Harvey wrote: Thank you for the list of information. Most of it I had read from other sites. I don't agree with the statement that an MRI " is the only way to know if the child has congenital scoliosis or idiopathic scoliosis " . We know Grace's scoliosis is due to a partial vertabrae, therefore that makes it Congenital according to the definitions I have read off of many sites. This was definately diagnosed via an x-ray only as her MRI isn't until next week. I would agree that in " some " cases that is probably true, but not all. Anyhow, no one has really answered the question I was asking. The direct question is... Are most of the kids on this site diagnosed with Idiopathic Scoliosis? And is that the reason for the feeling of " anti-surgery " and a push to use casting or bracing that I am seeing from the members here? They are not planning on using a rod or anything for Grace. It is just a fusion they are planning. I can't seem to get a straight answer from anyone (not meaning here) on what that might entail as I hear there are a number of various ways that the procedure is performed. So, that is why I searched and eventually found this site, but if the majority of kids here aren't in similar situations as Grace, then I may need to continue to search and find a support site that is more familiar with the typical treatments for congenital scoliosis rather than idiopathic. I hope that all makes more sense. Jane and Gracie " *\\o/* San *\\o/* " wrote: Jane,I'm not sure what you're asking, so I'm going to start with the basics. Some surgeons are great and have the latest information, others drastically misinform (as was the case with the first two we saw). So, forgive me if you know any/all of this. When a child is found to have a curve of the spine, the first step is usually a diagnostic x-ray. This shows the actual curve - usually a C curve or an S curve that likely started as a C and balanced itself with a compensatory curve at the top or bottom so that the child was upright. The next crucial step is an MRI to see each vertebrae and the position of the spinal cord. This is usually done sedated or under general anesthesia for infants/toddlers. This is the only way to know if the child has congenital scoliosis or idiopathic scoliosis. From there, if it is congenital, there is likely a surgical step that comes next because no bracing or other treatment can help, as far as I understand (speaking from what I've read only, since our son does not have congenital - even though that was his official diagnosis on paper - we were told, " Because of his age. " This is incorrect.) If it is idiopathic, there is no reason for it. This means no biological reason for the curve having formed - no wedge vertebrae, no tethered cord, no tumors or associated malformations. There is " just " a curve with no explanation. This is when close monitoring needs to begin - immediately, and when you need to know the RVAD measurement. Basically, the ribs should go into the spine horizontally and they do not in kids with scoliosis. They come in at an angle. This Rib Vertical Angle Deference is the angle at which the ribs intersect with the spine. The larger this number (Jack's was 45°) the more likely it is to be a progressive curve. In this case, the curve will continue to get worse and the child will likely end up in surgery down the road with internal support systems like growth rods or titanium ribs. There is also a population of kids with idiopathic scoliosis who have an underlying connective tissue disorder - a genetic cause for the scoliosis. One surgeon we talked to believed ALL children with scoliosis have some kind of genetic reason and they have isolated that gene, but no screenings are in place yet. There is a percentage of cases of idiopathic (unknown cause) scoliosis that are deemed resolving - they will get better as the child grows. However, again, the RVAD is usually a good indicator of whether or not it is progressive or resolving. This is why very close monitoring and frequent x-rays by a qualified early treatment surgeon are imperative. There have been several babies over the last year or so since I found this group that learned their child had resolving scoliosis and that they would not require any treatment. So, it does happen. However, precious time can be lost by these doctors who just assume ALL infantile scoliosis is resolving. We know it is not with great certainty and this " watch and wait " prognosis makes us lose this precious window of time for early treatment. If a child was set to wait and watch and the curve was low with a low RVAD, I would wait no longer than 4-6 weeks between x-rays. Things progress very quickly sometimes and growth spurts trigger a lot of change. However, growth spurts also can trigger POSITIVE change. This is the early treatment method that Dr/Miss Mehta developed and perfected. When you interrupt the rotation of the spine and the rapid curving of the spine, you can almost redirect the growth into upward, straight growth. Through this method, the infants/toddlers are suspended in gentle traction. They are given muscle relaxers under general anesthesia, and their airways are protected by a breathing tube. A properly trained, qualified surgeon - with the right, pediatric frame to do so, gently manipulates the spine back toward a straighter position then rapidly casts it in plaster gauze and fiberglass for stability. After applying the cast, a large expansion window is cut out of the front to prevent chest wall deformity and allow for expansion of the abdomen and ribcage. A corresponding window is cut into the back to encourage the spine to uncoil and stop causing the rib protrusion and shifting that happens so quickly and causes the spine to want to bounce back. Miss Mehta's method is the only one that not only addresses the curve, but also the rotation - I believe the largest piece of the puzzle, as well as kyphosis (curving out) and lordosis (flattening or curving in) of the spine. As the child grows, in this rapid period of growth between infancy and toddlerhood, they will grow into this shape and the cast will harness that growth and cause the spine to redirect upward. The surgeon will remove and re-cast, gaining slight improvement each time so that the process is gradual and as gentle as possible. There are children for whom casting does not cure their curve. Many of these kids have an underlying connective tissue disorder, or, for some reason have a rigid spine that does not respond. Some were misinformed early on and missed that precious window of time. However, even in these cases, casting is the only thing that will allow for lung and heart function to maintain normal levels - as much as possible. When we weren't sure casting would work for Jack, we were told that without it his curve would be in the hundreds, compressing his heart and lungs. Even if casting did not cure him, we were told it was imperative to lift the spine off his organs to let him breathe and let his heart function properly. And, then, when he was older, he would have surgery to stabilize his spine from the inside. Thankfully, we were able to continue the process and 's curve is now down to 38° - half of where he started - and he is down to 22° in this fourth cast. We were told at this last visit that he would never need growth rods or VEPTR implants. Without this group, and the moms here, and ISOP, we would be waiting for a surgery date. And, potentially, another 6 months later - and 6 months after that - and every 3-4 years he would need to have the instrumentation replace entirely. The precious kids on this group who have had to endure so much - instruments breaking - ribs breaking - being far from home or far from the hospital and having to wait several days to get into the operating room for repairs! It's just surreal to me. I am SO grateful for this method of treatment and cannot imagine all that the kids go through on a surgical level. I am sad that their children have had to suffer so much, but so grateful for their sacrifice so that does not have to face that in his life. The best thing you can do is have a child evaluated by a properly trained physician - which can be found in the database here. You can get assistance with travel from charity airlines and from Shriner's Temples, as well as Mc House. Even if the doctor tells you the same thing that you have already heard, it is imperative to find someone who really, truly knows early intervention. Hope that helps! Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 I just want to add....speaking for myself, I am " anti-surgery " b/c: 1. My son's case is idiopathic 2. We caught his progressive scoli in the time frame that early treatment could help him 3. We found a doctor willing to apply a Mehta style POP jacket 4. The POP jacket worked for Evan, his curvature decreased from 48* down to just 5* and his RVAD decreased from around 50 initally down to a very minimal number 5. I don't want my child to have to face invasive surgery if there is a safe, non-invasive option to try. This isn't to say that early treatment w/a POP jacket is for every child...Just an option for children who fall into the Progressive Idopathic Infantile Scoliosis category, and some kiddo's w/other anomilies can buy time from surgery w/a POP jacket.. HTH Good luck! and Evan Jane Harvey wrote: Thank you Tasha Fontenot wrote: Jane, From what I know I will answer your question..........I am pretty sure the majority of this group is made up of Moms with children with Idiopathic Scoliosis. If I am wrong I am sure others will chime in. I am also sure there are some with congenital scoliosis too. And yes, at least for me, I was trying to avoid surgery. This group is a great support for either idiopathic or congenital, but I totally understand you wanting ot find a group with similarities to Grace's. Hope this helps some. Tasha Jane Harvey wrote: Thank you for the list of information. Most of it I had read from other sites. I don't agree with the statement that an MRI " is the only way to know if the child has congenital scoliosis or idiopathic scoliosis " . We know Grace's scoliosis is due to a partial vertabrae, therefore that makes it Congenital according to the definitions I have read off of many sites. This was definately diagnosed via an x-ray only as her MRI isn't until next week. I would agree that in " some " cases that is probably true, but not all. Anyhow, no one has really answered the question I was asking. The direct question is... Are most of the kids on this site diagnosed with Idiopathic Scoliosis? And is that the reason for the feeling of " anti-surgery " and a push to use casting or bracing that I am seeing from the members here? They are not planning on using a rod or anything for Grace. It is just a fusion they are planning. I can't seem to get a straight answer from anyone (not meaning here) on what that might entail as I hear there are a number of various ways that the procedure is performed. So, that is why I searched and eventually found this site, but if the majority of kids here aren't in similar situations as Grace, then I may need to continue to search and find a support site that is more familiar with the typical treatments for congenital scoliosis rather than idiopathic. I hope that all makes more sense. Jane and Gracie " *\\o/* San *\\o/* " wrote: Jane,I'm not sure what you're asking, so I'm going to start with the basics. Some surgeons are great and have the latest information, others drastically misinform (as was the case with the first two we saw). So, forgive me if you know any/all of this. When a child is found to have a curve of the spine, the first step is usually a diagnostic x-ray. This shows the actual curve - usually a C curve or an S curve that likely started as a C and balanced itself with a compensatory curve at the top or bottom so that the child was upright. The next crucial step is an MRI to see each vertebrae and the position of the spinal cord. This is usually done sedated or under general anesthesia for infants/toddlers. This is the only way to know if the child has congenital scoliosis or idiopathic scoliosis. From there, if it is congenital, there is likely a surgical step that comes next because no bracing or other treatment can help, as far as I understand (speaking from what I've read only, since our son does not have congenital - even though that was his official diagnosis on paper - we were told, " Because of his age. " This is incorrect.) If it is idiopathic, there is no reason for it. This means no biological reason for the curve having formed - no wedge vertebrae, no tethered cord, no tumors or associated malformations. There is " just " a curve with no explanation. This is when close monitoring needs to begin - immediately, and when you need to know the RVAD measurement. Basically, the ribs should go into the spine horizontally and they do not in kids with scoliosis. They come in at an angle. This Rib Vertical Angle Deference is the angle at which the ribs intersect with the spine. The larger this number (Jack's was 45°) the more likely it is to be a progressive curve. In this case, the curve will continue to get worse and the child will likely end up in surgery down the road with internal support systems like growth rods or titanium ribs. There is also a population of kids with idiopathic scoliosis who have an underlying connective tissue disorder - a genetic cause for the scoliosis. One surgeon we talked to believed ALL children with scoliosis have some kind of genetic reason and they have isolated that gene, but no screenings are in place yet. There is a percentage of cases of idiopathic (unknown cause) scoliosis that are deemed resolving - they will get better as the child grows. However, again, the RVAD is usually a good indicator of whether or not it is progressive or resolving. This is why very close monitoring and frequent x-rays by a qualified early treatment surgeon are imperative. There have been several babies over the last year or so since I found this group that learned their child had resolving scoliosis and that they would not require any treatment. So, it does happen. However, precious time can be lost by these doctors who just assume ALL infantile scoliosis is resolving. We know it is not with great certainty and this " watch and wait " prognosis makes us lose this precious window of time for early treatment. If a child was set to wait and watch and the curve was low with a low RVAD, I would wait no longer than 4-6 weeks between x-rays. Things progress very quickly sometimes and growth spurts trigger a lot of change. However, growth spurts also can trigger POSITIVE change. This is the early treatment method that Dr/Miss Mehta developed and perfected. When you interrupt the rotation of the spine and the rapid curving of the spine, you can almost redirect the growth into upward, straight growth. Through this method, the infants/toddlers are suspended in gentle traction. They are given muscle relaxers under general anesthesia, and their airways are protected by a breathing tube. A properly trained, qualified surgeon - with the right, pediatric frame to do so, gently manipulates the spine back toward a straighter position then rapidly casts it in plaster gauze and fiberglass for stability. After applying the cast, a large expansion window is cut out of the front to prevent chest wall deformity and allow for expansion of the abdomen and ribcage. A corresponding window is cut into the back to encourage the spine to uncoil and stop causing the rib protrusion and shifting that happens so quickly and causes the spine to want to bounce back. Miss Mehta's method is the only one that not only addresses the curve, but also the rotation - I believe the largest piece of the puzzle, as well as kyphosis (curving out) and lordosis (flattening or curving in) of the spine. As the child grows, in this rapid period of growth between infancy and toddlerhood, they will grow into this shape and the cast will harness that growth and cause the spine to redirect upward. The surgeon will remove and re-cast, gaining slight improvement each time so that the process is gradual and as gentle as possible. There are children for whom casting does not cure their curve. Many of these kids have an underlying connective tissue disorder, or, for some reason have a rigid spine that does not respond. Some were misinformed early on and missed that precious window of time. However, even in these cases, casting is the only thing that will allow for lung and heart function to maintain normal levels - as much as possible. When we weren't sure casting would work for Jack, we were told that without it his curve would be in the hundreds, compressing his heart and lungs. Even if casting did not cure him, we were told it was imperative to lift the spine off his organs to let him breathe and let his heart function properly. And, then, when he was older, he would have surgery to stabilize his spine from the inside. Thankfully, we were able to continue the process and 's curve is now down to 38° - half of where he started - and he is down to 22° in this fourth cast. We were told at this last visit that he would never need growth rods or VEPTR implants. Without this group, and the moms here, and ISOP, we would be waiting for a surgery date. And, potentially, another 6 months later - and 6 months after that - and every 3-4 years he would need to have the instrumentation replace entirely. The precious kids on this group who have had to endure so much - instruments breaking - ribs breaking - being far from home or far from the hospital and having to wait several days to get into the operating room for repairs! It's just surreal to me. I am SO grateful for this method of treatment and cannot imagine all that the kids go through on a surgical level. I am sad that their children have had to suffer so much, but so grateful for their sacrifice so that does not have to face that in his life. The best thing you can do is have a child evaluated by a properly trained physician - which can be found in the database here. You can get assistance with travel from charity airlines and from Shriner's Temples, as well as Mc House. Even if the doctor tells you the same thing that you have already heard, it is imperative to find someone who really, truly knows early intervention. Hope that helps! Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2011 Report Share Posted July 30, 2011 Dr Jim POOLE OR ADDISON TAYLORTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension I'm just wondering if anyone on here knows of an endo specializing in PA in Houston, TX... you can email me privately at bev2454@... if you would like... bevAnnieRomans 8:28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose.check out my website: http://www.angelfire.com/tn/shepherdsrest/MorningGlory.html http://www.angelfire.com/tn/shepherdsrest/porch.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2011 Report Share Posted July 31, 2011 Thank you Dr. Grim. My endo has mentioned a female endo there that would do the AVS if he decided to go that route with the nodule being on my left adrenal. I cannot recall her name though. bevAnnieRomans 8:28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose.check out my website: http://www.angelfire.com/tn/shepherdsrest/MorningGlory.html http://www.angelfire.com/tn/shepherdsrest/porch.html--- Subject: Re: questionTo: "hyperaldosteronism " <hyperaldosteronism >Date: Saturday, July 30, 2011, 11:01 PM Dr Jim POOLE OR ADDISON TAYLORTiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension I'm just wondering if anyone on here knows of an endo specializing in PA in Houston, TX... you can email me privately at bev2454@... if you would like... bevAnnieRomans 8:28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose.check out my website: http://www.angelfire.com/tn/shepherdsrest/MorningGlory.html http://www.angelfire.com/tn/shepherdsrest/porch.html Quote Link to comment Share on other sites More sharing options...
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