Guest guest Posted November 8, 2011 Report Share Posted November 8, 2011 Gelenda, Wow, it sounds like your family has a lot on your plate right now. HUGS!! I'm so sorry that I do not have much advise on those particular issues/conditions but I do have an idea on seeking a second opinion. We too went looking for a second opinion for our sons scoliosis. I wanted what I thought was the best option for my son & that was a Shriner's hospital 2 states away. I knew that if we " went for it " & it worked that I would never know if we would have achieved those same results by getting treatment here at home or by watching & waiting. However I knew with certainty that I couldn't live with myself if we tried one of the later paths & it didn't work & my son missed his chance at what I believed was the best possible treatment. By reading your email it sounds like you believe your doctor might have some valid points, but you do not have the confidence in him that you need to for peace of mind. There is no harm in that! Doctors are only human & a good doctor wouldn't have such an ego that gets in the way of his highest priority...his patients! Your daughter has but one advocate...YOU! Seek as many opinions as it takes...you will know when you find the right hospital/doctor. Since this most likely will mean traveling for you... have you considered sending your daughters information/X rays/ & future MRI around to different places first...just to see what they say? I know meeting in person is ideal, but we found with our first phone call a place where we felt confident & they were so positive about my sons condition. I knew that's where we needed to be. The Doctor assessed our sons condition & case by the information we sent (X rays & doctor's notes) & over the phone before we ever even traveled anywhere. This took about 2 weeks. In fact the first trip we made he received his cast. I'm sorry the only suggestion I have for another opinion is to look up any Shriner's Hospitals near you....but I bet if you reach out to she might be able to suggest some places to go?!?! Best of luck, Amber mommy to Levi 1st cast 31* down to 16/17* in cast > Hello, All. > > > > I have been reading posts for a while and you all seem like such a > supportive & helpful group - so I am coming to you scared, lost & > confused. I need some insight and advice, pretty please! I have gone > back and forth and have reviewed pro's & con's and all I have managed to > do is make myself borderline certifiable! > > > > Some quick background - my daughter Eliza is 11 months old (9 adjusted - > she was a preemie). She has a partial chromosomal duplication called > tetrasomy 18p. She also has scoliosis and torticollis. She was making > some progress towards sitting independently, but has since regressed - I > feel like this has to do with her scoli worsening. Her lower body has > gained a lot of strength, and she will bear quite a bit of weight on her > legs & kicks like Chuck Norris, but her upper body is a totally > different story. Her back seems so twisted, and on top of that her > muscle tone is so low that the top half feels like a floppy rag doll. > She hates being on her tummy, but when I make her do tummy time, she can > get her head up, but cannot push up at all. Her arms feel like wet > noodles, and even if she had the muscular ability, pushing up seems to > be painful to her. Again - I think this is related to the scoli. She > is in a developmental daycare and receives PT, OT and speech therapy. > > > > You may recall from previous posts - we are one of the families in > Arkansas who see the reportedly brilliant yet sexist and offensive > orthopedic surgeon - (I will call him Dr. Mc) - and there are not any > other viable ortho options close by. Travelling is difficult, as I have > used up all of my time off - E gets sick frequently and has a few > hospitalizations - one that lasted for almost 4 months. However, if I > was certain travelling to another state would be the best thing for her, > I'd find a way to make it happen. > > > > I have yet to get an accurate measurement of her curve - the last x-ray > taken was with her brace on, so I don't see how that could be accurate. > However, at that time, our ortho said " it looked to be about 23 " . > Well, it looks to be a lot worse than that to me, as her spine is all > the way on the left side of her body and looks like it's running into > her shoulder blade. When I asked about the RVAD, he told me that " that > measurement wasn't applicable here " - not sure what THAT means. When I > asked about a MRI, I was told it was not needed. (I have since been > able to get another doc to order one, but it will not happen until > MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at > least consider his opinion since he is so widely respected, not just > locally, but on a national basis) is adamant that casting would be > detrimental to my daughter's overall health and development. She has > not physically seen the ortho since August - I've just been > communicating by phone trying to get information from the nurse. Here > are his issues with casting: > > > > 1. She has developmental delays, hypotonia (low muscle tone), and > Dr. Mc says the cast would make it more difficult for her to progress > physically and could cause long-term deficits in this area. > > > > 2. She has a lot of other medical issues. One is extremely severe > reflux - she has a g-tube, and a Nissen procedure. Even after the > Nissen, she is still prone to violent retching and vomiting. Her TLSO > brace is fairly soft, but even it can make these symptoms worse. Dr. Mc > feels a cast could cause her pain and possibly injure her if she were to > retch/vomit violently, and is concerned that we would not be able to > quickly remove the cast if this happened. He also is concerned about > the constant pressure on her chest & abdominal area worsening the > reflux, retching & vomiting. > > > > 3. She also has laryngotracheal malacia and obstructive sleep apnea > (which make her require oxygen at night-time), and is prone to frequent > respiratory infections & aspiration pneumonia. He says this is a > contraindication for casting as well, as a cast could possibly aggravate > these issues. > > > > I just don't know who to listen to. I can see that her curve is > progressing, and I think I am starting to see rotation (is that what > makes one hip higher?). When I rub her back it feels like there is > definitely more than one curve going on . She also has been sleeping in > the most strange and convoluted positions - if THAT is comfortable to > her, then I think the curve must be worse & more complex than what Dr. > Mc originally thought, or what he led me to believe, anyway. > > > > I want to do what is best for her, but I have to say, he does have some > valid points - all of which were concerns of mine before he even > brought them up. But - the watch-and-wait treatment doesn't feel right > to me either. The possibility of achieving a cure for her scoliosis is > a definite valid point as well - I just don't want to end up causing > even more damage or a possible injury if I did end up deciding to cast > her. I have heard on here so many times to go with your gut, but my gut > is going in so many different directions it feels like its tied itself > into a gigantic knot. > > > > So basically, I feel like I'm frozen & stuck and do not know which way > to go. Has anyone else had a child with these issues, or a similar > experience in being torn in half trying to decide which option is best > for your child? Are there any braces available that don't just hold a > curve, but can also correct it? Any help or insight would be much > appreciated. We have another appointment with the ortho on November 14, > so I'd like to get my ducks in a row so I can confront this without > turning into an emotional mess. > > > > I'm so sorry for the long dissertation - I'm never sure what info might > help or be pertinent when talking to doctors or email groups. J Thank > you so much in advance for your help. > > > > Glenda Grimmett > > Mom to Eliza - 11 months_,_._,___ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2011 Report Share Posted November 8, 2011 This is all very complex to say the least.... Could you travel for a second opinion? Maybe a second opinion would help you get to firmer ground and explore all options. My son also has low tone .... You have a lot going on. Can you consult another specialist maybe a geneticist or dev pediatrician??? Is there a support group out there for the genetic condition? If so, are any of their kids in casts?What does the PT think? Hmmm. Let me think about this one. You obviously need a doc w experience w very special cases.TameSent from my iPhoneOn Nov 8, 2011, at 12:21 PM, "Glenda Grimmett" <glendag@...> wrote: Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda GrimmettMom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2011 Report Share Posted November 8, 2011 This is all very complex to say the least.... Could you travel for a second opinion? Maybe a second opinion would help you get to firmer ground and explore all options. My son also has low tone .... You have a lot going on. Can you consult another specialist maybe a geneticist or dev pediatrician??? Is there a support group out there for the genetic condition? If so, are any of their kids in casts?What does the PT think? Hmmm. Let me think about this one. You obviously need a doc w experience w very special cases.TameSent from my iPhoneOn Nov 8, 2011, at 12:21 PM, "Glenda Grimmett" <glendag@...> wrote: Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda GrimmettMom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2011 Report Share Posted November 8, 2011 Tame, Thanks for your reply. I appreciate all of you reaching out to help – I am at the end of my rope! I guess I am going to have to travel –unfortunately, it will have to wait until the first of the year though – as I have exhausted my leave at work. Anyone have an idea what EDF facility is closest to Little Rock? I looked up all the Shriner’s hospitals, but wasn’t sure if every Shriner’s was well-versed in Dr. Mehta’s teachings, or if some were better than others. If I’m going to have to travel I might as well travel to whoever is the best, right? J Yes, there is a support group for her condition, but no other children in casts. There are a few other kids with scoli, but their families are either doing the watch & wait game or have opted for surgery. There are only about 300 known people in the world with her genetic condition, so when you whittle it down to those of the group who speak English – it’s a pretty small sample. I have consulted her pediatrician, medical home clinic, pulmonologist, geneticist, neurologist, physical therapist... even MY and my parent’s PCP’s. Here’s the problem – they all defer to Dr. Mc and say if it were their own kid they would not let anyone else but him do the treatment. Like I said – the guy seems to be a legend or something.  I’ve been informed Dr. Mc created something called the “Shilla Technique†for treating scoli , was a past president of the Scoliosis Research Society, did his residency at Harvard and was on a show on the Discovery channel about scoliosis.   I guess down yonder here in Arkansas, anyone who went to Harvard AND has been on TV for goodness sakes is the best thing since Wonder Bread and Miracle Whip, and is not to be questioned. J I agree – we need to find a doc that is experienced in very special cases. Does anyone have any physicians they know of who might fit that bill? Again, THANK YOU ALL  soooooooooooo much for all the input & support! Glenda GrimmettLegacy Capital Group LLC From: Tame Olson [mailto:dazies2001@...] Sent: Tuesday, November 08, 2011 3:18 PMinfantile scoliosis treatment Subject: Re: Scared & Confused This is all very complex to say the least.... Could you travel for a second opinion? Maybe a second opinion would help you get to firmer ground and explore all options. My son also has low tone .... You have a lot going on. Can you consult another specialist maybe a geneticist or dev pediatrician??? Is there a support group out there for the genetic condition? If so, are any of their kids in casts?What does the PT think? Hmmm. Let me think about this one. You obviously need a doc w experience w very special cases.TameSent from my iPhoneOn Nov 8, 2011, at 12:21 PM, " Glenda Grimmett " <glendag@...> wrote:Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda GrimmettMom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2011 Report Share Posted November 8, 2011 Hi, I know that you have had a few reply's and mine isn't any more informative. It just broke my heart when I read your message. I agree that you should at least send your information to another hospital. It can't hurt to get a second opinion. My daughter Avery doesn't have any genetic conditions, but was born 10 weeks early, had pretty bad reflux (which she took medication for, but no tubes), torticollis and scoliosis (started at 39 degrees). We found that her torticollis improved greatly as her spine did and as far as the reflux, I would say that as her spine got better so did that. I have heard that a cast puts less pressure on the abdomen than a brace as well. I hope you find the answers you are looking for...or at least the peace of mind. (HUGS) Randi Mom to Avery and 2yrs. Avery torticollis resolved and scoliosis down to 22* out of cast from 39*. Going for 4th cast on Monday. From: Glenda Grimmett <glendag@...>infantile scoliosis treatment Sent: Tuesday, November 8, 2011 12:21 PMSubject: Scared & Confused Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda Grimmett Mom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2011 Report Share Posted November 8, 2011 I would continue to suggest Shriner's. They see kids with all sorts of issues along with their scoliosis and I'd think therefore probably the best "one stop shopping" so to speak. I also would continue to urge you to press harder for the MRI to be sooner rather than later and if possible before you cast. Casting someone with a tethered cord can cause additional problems if pressure is put on certain areas of the spine. I would also think that you'd need to make sure you really are dealing with idiopathic scoliosis and not congenital prior to casting and you can't always tell in more complicated cases with an xray alone. In addition, once you have the MRI, make sure it isn't just read by a radiologist or your ortho, make sure it is read by a pediatric neurosurgeon, tethers have been known to be missed by the other professions. Wish I had more for you... HUGS and keep up the great work! Jane From: Glenda Grimmett <glendag@...>infantile scoliosis treatment Sent: Tuesday, November 8, 2011 2:09 PMSubject: RE: Scared & Confused Tame, Thanks for your reply. I appreciate all of you reaching out to help – I am at the end of my rope! I guess I am going to have to travel –unfortunately, it will have to wait until the first of the year though – as I have exhausted my leave at work. Anyone have an idea what EDF facility is closest to Little Rock? I looked up all the Shriner’s hospitals, but wasn’t sure if every Shriner’s was well-versed in Dr. Mehta’s teachings, or if some were better than others. If I’m going to have to travel I might as well travel to whoever is the best, right? J Yes, there is a support group for her condition, but no other children in casts. There are a few other kids with scoli, but their families are either doing the watch & wait game or have opted for surgery. There are only about 300 known people in the world with her genetic condition, so when you whittle it down to those of the group who speak English – it’s a pretty small sample. I have consulted her pediatrician, medical home clinic, pulmonologist, geneticist, neurologist, physical therapist... even MY and my parent’s PCP’s. Here’s the problem – they all defer to Dr. Mc and say if it were their own kid they would not let anyone else but him do the treatment. Like I said – the guy seems to be a legend or something. I’ve been informed Dr. Mc created something called the “Shilla Technique†for treating scoli , was a past president of the Scoliosis Research Society, did his residency at Harvard and was on a show on the Discovery channel about scoliosis. I guess down yonder here in Arkansas, anyone who went to Harvard AND has been on TV for goodness sakes is the best thing since Wonder Bread and Miracle Whip, and is not to be questioned. J I agree – we need to find a doc that is experienced in very special cases. Does anyone have any physicians they know of who might fit that bill? Again, THANK YOU ALL soooooooooooo much for all the input & support! Glenda Grimmett Legacy Capital Group LLC From: Tame Olson [mailto:dazies2001@...] Sent: Tuesday, November 08, 2011 3:18 PMinfantile scoliosis treatment Subject: Re: Scared & Confused This is all very complex to say the least.... Could you travel for a second opinion? Maybe a second opinion would help you get to firmer ground and explore all options. My son also has low tone .... You have a lot going on. Can you consult another specialist maybe a geneticist or dev pediatrician??? Is there a support group out there for the genetic condition? If so, are any of their kids in casts?What does the PT think? Hmmm. Let me think about this one. You obviously need a doc w experience w very special cases. TameSent from my iPhone On Nov 8, 2011, at 12:21 PM, "Glenda Grimmett" <glendag@...> wrote: Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda Grimmett Mom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2011 Report Share Posted November 8, 2011 I would continue to suggest Shriner's. They see kids with all sorts of issues along with their scoliosis and I'd think therefore probably the best "one stop shopping" so to speak. I also would continue to urge you to press harder for the MRI to be sooner rather than later and if possible before you cast. Casting someone with a tethered cord can cause additional problems if pressure is put on certain areas of the spine. I would also think that you'd need to make sure you really are dealing with idiopathic scoliosis and not congenital prior to casting and you can't always tell in more complicated cases with an xray alone. In addition, once you have the MRI, make sure it isn't just read by a radiologist or your ortho, make sure it is read by a pediatric neurosurgeon, tethers have been known to be missed by the other professions. Wish I had more for you... HUGS and keep up the great work! Jane From: Glenda Grimmett <glendag@...>infantile scoliosis treatment Sent: Tuesday, November 8, 2011 2:09 PMSubject: RE: Scared & Confused Tame, Thanks for your reply. I appreciate all of you reaching out to help – I am at the end of my rope! I guess I am going to have to travel –unfortunately, it will have to wait until the first of the year though – as I have exhausted my leave at work. Anyone have an idea what EDF facility is closest to Little Rock? I looked up all the Shriner’s hospitals, but wasn’t sure if every Shriner’s was well-versed in Dr. Mehta’s teachings, or if some were better than others. If I’m going to have to travel I might as well travel to whoever is the best, right? J Yes, there is a support group for her condition, but no other children in casts. There are a few other kids with scoli, but their families are either doing the watch & wait game or have opted for surgery. There are only about 300 known people in the world with her genetic condition, so when you whittle it down to those of the group who speak English – it’s a pretty small sample. I have consulted her pediatrician, medical home clinic, pulmonologist, geneticist, neurologist, physical therapist... even MY and my parent’s PCP’s. Here’s the problem – they all defer to Dr. Mc and say if it were their own kid they would not let anyone else but him do the treatment. Like I said – the guy seems to be a legend or something. I’ve been informed Dr. Mc created something called the “Shilla Technique†for treating scoli , was a past president of the Scoliosis Research Society, did his residency at Harvard and was on a show on the Discovery channel about scoliosis. I guess down yonder here in Arkansas, anyone who went to Harvard AND has been on TV for goodness sakes is the best thing since Wonder Bread and Miracle Whip, and is not to be questioned. J I agree – we need to find a doc that is experienced in very special cases. Does anyone have any physicians they know of who might fit that bill? Again, THANK YOU ALL soooooooooooo much for all the input & support! Glenda Grimmett Legacy Capital Group LLC From: Tame Olson [mailto:dazies2001@...] Sent: Tuesday, November 08, 2011 3:18 PMinfantile scoliosis treatment Subject: Re: Scared & Confused This is all very complex to say the least.... Could you travel for a second opinion? Maybe a second opinion would help you get to firmer ground and explore all options. My son also has low tone .... You have a lot going on. Can you consult another specialist maybe a geneticist or dev pediatrician??? Is there a support group out there for the genetic condition? If so, are any of their kids in casts?What does the PT think? Hmmm. Let me think about this one. You obviously need a doc w experience w very special cases. TameSent from my iPhone On Nov 8, 2011, at 12:21 PM, "Glenda Grimmett" <glendag@...> wrote: Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda Grimmett Mom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2011 Report Share Posted November 8, 2011 Jane, Do you happen to know if ALL the Shriner’s Hospitals in the US are Mehta trained, or is it just some of them?  Thanks! Glenda GrimmettLegacy Capital Group LLC From: Jane Bigler [mailto:janemhar@...] Sent: Tuesday, November 08, 2011 4:36 PMinfantile scoliosis treatment Subject: Re: Scared & Confused I would continue to suggest Shriner's. They see kids with all sorts of issues along with their scoliosis and I'd think therefore probably the best " one stop shopping " so to speak. I also would continue to urge you to press harder for the MRI to be sooner rather than later and if possible before you cast. Casting someone with a tethered cord can cause additional problems if pressure is put on certain areas of the spine. I would also think that you'd need to make sure you really are dealing with idiopathic scoliosis and not congenital prior to casting and you can't always tell in more complicated cases with an xray alone. In addition, once you have the MRI, make sure it isn't just read by a radiologist or your ortho, make sure it is read by a pediatric neurosurgeon, tethers have been known to be missed by the other professions. Wish I had more for you... HUGS and keep up the great work! Jane From: Glenda Grimmett <glendag@...>infantile scoliosis treatment Sent: Tuesday, November 8, 2011 2:09 PMSubject: RE: Scared & Confused Tame, Thanks for your reply. I appreciate all of you reaching out to help – I am at the end of my rope! I guess I am going to have to travel –unfortunately, it will have to wait until the first of the year though – as I have exhausted my leave at work. Anyone have an idea what EDF facility is closest to Little Rock? I looked up all the Shriner’s hospitals, but wasn’t sure if every Shriner’s was well-versed in Dr. Mehta’s teachings, or if some were better than others. If I’m going to have to travel I might as well travel to whoever is the best, right? J Yes, there is a support group for her condition, but no other children in casts. There are a few other kids with scoli, but their families are either doing the watch & wait game or have opted for surgery. There are only about 300 known people in the world with her genetic condition, so when you whittle it down to those of the group who speak English – it’s a pretty small sample. I have consulted her pediatrician, medical home clinic, pulmonologist, geneticist, neurologist, physical therapist... even MY and my parent’s PCP’s. Here’s the problem – they all defer to Dr. Mc and say if it were their own kid they would not let anyone else but him do the treatment. Like I said – the guy seems to be a legend or something. I’ve been informed Dr. Mc created something called the “Shilla Technique†for treating scoli , was a past president of the Scoliosis Research Society, did his residency at Harvard and was on a show on the Discovery channel about scoliosis. I guess down yonder here in Arkansas, anyone who went to Harvard AND has been on TV for goodness sakes is the best thing since Wonder Bread and Miracle Whip, and is not to be questioned. J I agree – we need to find a doc that is experienced in very special cases. Does anyone have any physicians they know of who might fit that bill? Again, THANK YOU ALL soooooooooooo much for all the input & support! Glenda GrimmettLegacy Capital Group LLC From: Tame Olson [mailto:dazies2001@...] Sent: Tuesday, November 08, 2011 3:18 PMinfantile scoliosis treatment Subject: Re: Scared & Confused This is all very complex to say the least.... Could you travel for a second opinion? Maybe a second opinion would help you get to firmer ground and explore all options. My son also has low tone .... You have a lot going on. Can you consult another specialist maybe a geneticist or dev pediatrician??? Is there a support group out there for the genetic condition? If so, are any of their kids in casts?What does the PT think? Hmmm. Let me think about this one. You obviously need a doc w experience w very special cases.TameSent from my iPhoneOn Nov 8, 2011, at 12:21 PM, " Glenda Grimmett " <glendag@...> wrote:Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda GrimmettMom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2011 Report Share Posted November 8, 2011 Not all are. And some say they are, but ISOP doesn't recognize them to be. I believe there is a list on the website of Mehta certified facilities. Jane From: Glenda Grimmett <glendag@...>infantile scoliosis treatment Sent: Tuesday, November 8, 2011 3:00 PMSubject: RE: Scared & Confused Jane, Do you happen to know if ALL the Shriner’s Hospitals in the US are Mehta trained, or is it just some of them? Thanks! Glenda Grimmett Legacy Capital Group LLC From: Jane Bigler [mailto:janemhar@...] Sent: Tuesday, November 08, 2011 4:36 PMinfantile scoliosis treatment Subject: Re: Scared & Confused I would continue to suggest Shriner's. They see kids with all sorts of issues along with their scoliosis and I'd think therefore probably the best "one stop shopping" so to speak. I also would continue to urge you to press harder for the MRI to be sooner rather than later and if possible before you cast. Casting someone with a tethered cord can cause additional problems if pressure is put on certain areas of the spine. I would also think that you'd need to make sure you really are dealing with idiopathic scoliosis and not congenital prior to casting and you can't always tell in more complicated cases with an xray alone. In addition, once you have the MRI, make sure it isn't just read by a radiologist or your ortho, make sure it is read by a pediatric neurosurgeon, tethers have been known to be missed by the other professions. Wish I had more for you... HUGS and keep up the great work! Jane From: Glenda Grimmett <glendag@...>infantile scoliosis treatment Sent: Tuesday, November 8, 2011 2:09 PMSubject: RE: Scared & Confused Tame, Thanks for your reply. I appreciate all of you reaching out to help – I am at the end of my rope! I guess I am going to have to travel –unfortunately, it will have to wait until the first of the year though – as I have exhausted my leave at work. Anyone have an idea what EDF facility is closest to Little Rock? I looked up all the Shriner’s hospitals, but wasn’t sure if every Shriner’s was well-versed in Dr. Mehta’s teachings, or if some were better than others. If I’m going to have to travel I might as well travel to whoever is the best, right? J Yes, there is a support group for her condition, but no other children in casts. There are a few other kids with scoli, but their families are either doing the watch & wait game or have opted for surgery. There are only about 300 known people in the world with her genetic condition, so when you whittle it down to those of the group who speak English – it’s a pretty small sample. I have consulted her pediatrician, medical home clinic, pulmonologist, geneticist, neurologist, physical therapist... even MY and my parent’s PCP’s. Here’s the problem – they all defer to Dr. Mc and say if it were their own kid they would not let anyone else but him do the treatment. Like I said – the guy seems to be a legend or something. I’ve been informed Dr. Mc created something called the “Shilla Technique†for treating scoli , was a past president of the Scoliosis Research Society, did his residency at Harvard and was on a show on the Discovery channel about scoliosis. I guess down yonder here in Arkansas, anyone who went to Harvard AND has been on TV for goodness sakes is the best thing since Wonder Bread and Miracle Whip, and is not to be questioned. J I agree – we need to find a doc that is experienced in very special cases. Does anyone have any physicians they know of who might fit that bill? Again, THANK YOU ALL soooooooooooo much for all the input & support! Glenda Grimmett Legacy Capital Group LLC From: Tame Olson [mailto:dazies2001@...] Sent: Tuesday, November 08, 2011 3:18 PMinfantile scoliosis treatment Subject: Re: Scared & Confused This is all very complex to say the least.... Could you travel for a second opinion? Maybe a second opinion would help you get to firmer ground and explore all options. My son also has low tone .... You have a lot going on. Can you consult another specialist maybe a geneticist or dev pediatrician??? Is there a support group out there for the genetic condition? If so, are any of their kids in casts?What does the PT think? Hmmm. Let me think about this one. You obviously need a doc w experience w very special cases. TameSent from my iPhone On Nov 8, 2011, at 12:21 PM, "Glenda Grimmett" <glendag@...> wrote: Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda Grimmett Mom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2011 Report Share Posted November 9, 2011 I also think most are listed but the list isn't totally current. Also, don't forget Masonic hospitals are also a branch of Shriners.TSent from my iPhoneOn Nov 8, 2011, at 5:00 PM, "Glenda Grimmett" <glendag@...> wrote: Jane, Do you happen to know if ALL the Shriner’s Hospitals in the US are Mehta trained, or is it just some of them? Thanks! Glenda GrimmettLegacy Capital Group LLC From: Jane Bigler [mailto:janemhar@...] Sent: Tuesday, November 08, 2011 4:36 PMinfantile scoliosis treatment Subject: Re: Scared & Confused I would continue to suggest Shriner's. They see kids with all sorts of issues along with their scoliosis and I'd think therefore probably the best "one stop shopping" so to speak. I also would continue to urge you to press harder for the MRI to be sooner rather than later and if possible before you cast. Casting someone with a tethered cord can cause additional problems if pressure is put on certain areas of the spine. I would also think that you'd need to make sure you really are dealing with idiopathic scoliosis and not congenital prior to casting and you can't always tell in more complicated cases with an xray alone. In addition, once you have the MRI, make sure it isn't just read by a radiologist or your ortho, make sure it is read by a pediatric neurosurgeon, tethers have been known to be missed by the other professions. Wish I had more for you... HUGS and keep up the great work! Jane From: Glenda Grimmett <glendag@...>infantile scoliosis treatment Sent: Tuesday, November 8, 2011 2:09 PMSubject: RE: Scared & Confused Tame, Thanks for your reply. I appreciate all of you reaching out to help – I am at the end of my rope! I guess I am going to have to travel –unfortunately, it will have to wait until the first of the year though – as I have exhausted my leave at work. Anyone have an idea what EDF facility is closest to Little Rock? I looked up all the Shriner’s hospitals, but wasn’t sure if every Shriner’s was well-versed in Dr. Mehta’s teachings, or if some were better than others. If I’m going to have to travel I might as well travel to whoever is the best, right? J Yes, there is a support group for her condition, but no other children in casts. There are a few other kids with scoli, but their families are either doing the watch & wait game or have opted for surgery. There are only about 300 known people in the world with her genetic condition, so when you whittle it down to those of the group who speak English – it’s a pretty small sample. I have consulted her pediatrician, medical home clinic, pulmonologist, geneticist, neurologist, physical therapist... even MY and my parent’s PCP’s. Here’s the problem – they all defer to Dr. Mc and say if it were their own kid they would not let anyone else but him do the treatment. Like I said – the guy seems to be a legend or something. I’ve been informed Dr. Mc created something called the “Shilla Technique†for treating scoli , was a past president of the Scoliosis Research Society, did his residency at Harvard and was on a show on the Discovery channel about scoliosis. I guess down yonder here in Arkansas, anyone who went to Harvard AND has been on TV for goodness sakes is the best thing since Wonder Bread and Miracle Whip, and is not to be questioned. J I agree – we need to find a doc that is experienced in very special cases. Does anyone have any physicians they know of who might fit that bill? Again, THANK YOU ALL soooooooooooo much for all the input & support! Glenda GrimmettLegacy Capital Group LLC From: Tame Olson [mailto:dazies2001@...] Sent: Tuesday, November 08, 2011 3:18 PMinfantile scoliosis treatment Subject: Re: Scared & Confused This is all very complex to say the least.... Could you travel for a second opinion? Maybe a second opinion would help you get to firmer ground and explore all options. My son also has low tone .... You have a lot going on. Can you consult another specialist maybe a geneticist or dev pediatrician??? Is there a support group out there for the genetic condition? If so, are any of their kids in casts?What does the PT think? Hmmm. Let me think about this one. You obviously need a doc w experience w very special cases.TameSent from my iPhoneOn Nov 8, 2011, at 12:21 PM, "Glenda Grimmett" <glendag@...> wrote:Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda GrimmettMom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2011 Report Share Posted November 9, 2011 Okay so what's her disorder umbrellad under? My son has a disorder also which is neurologically based. I think we need to find you a doc w background experience in whatever closest relates to the disorder if possible. Is it somehow related to nuromuscular (no idea how to spell that) or innerconnective tissue disorders? Maybe you should start w the family the disorder belongs in and branch out? My son had very low tone. With his syndrome it improves slightly over time. He may not have been able to handle a cast at 1 but I have no idea as we were not given that option.... I think you should get data available for any doc willing to look at your daughter who is Mehta trained. You may have to teach them about issues relating to your baby. Also create a developmental time line of progress and regression. I have distributed packets and shown docs info (nearly by force sometimes:)) because in my opinion they cannot make a sound decision wo knowing all there is to know even if it's generalized info that may or may not apply to your child based on a genetic condition....So if you are going to travel you need to travel to the best team there is and there are a lot of them out there. The question is which one will meet your needs best. Could you ask the geneticist or another doc familiar w Eliza if they know anyone w experience dealing w similar situations? I am thinking your docs guess she needs surgery. If that ends up being the case it sounds like you are in good hands..... In the meantime there is no reason why you can't look into other options... Just remember when you get to the end of your rope swing to another. Maybe you could start by focusing on a cover letter to your child's book of a medical file:) Explain who you are, her condition, and what kinda help you are seeking, include a photo and send it off. Call some of the Shriners. Don't forget TX ish Rite Masonic Hospital is 8 hrs away. We go there. Some Shriners will help w travel expenses if you need to fly so don't worry about financial issues immediately because The impossible can become within reach. What you actually need is a small miracle to find a needle in a haystack. There has to be a doc who has treated someone similar to your daughter.... Are there docs listed on your support group? On the support group for my son they have an organization that has yearly conferences and docs and researchers are listed. Still thinking of ways to help........ Don't give up. When you have the time or energy start looking into applying for Shriners and go through the process so you are ready in January. If you find out in the end that your doc was on the right path you will at least feel better about the end result. Not everone likes miracle whip and wonderbread but we find ourself eating it anyway if that's all there is:) Good luck!Tame Sent from my iPhoneOn Nov 8, 2011, at 4:09 PM, "Glenda Grimmett" <glendag@...> wrote: Tame, Thanks for your reply. I appreciate all of you reaching out to help – I am at the end of my rope! I guess I am going to have to travel –unfortunately, it will have to wait until the first of the year though – as I have exhausted my leave at work. Anyone have an idea what EDF facility is closest to Little Rock? I looked up all the Shriner’s hospitals, but wasn’t sure if every Shriner’s was well-versed in Dr. Mehta’s teachings, or if some were better than others. If I’m going to have to travel I might as well travel to whoever is the best, right? J Yes, there is a support group for her condition, but no other children in casts. There are a few other kids with scoli, but their families are either doing the watch & wait game or have opted for surgery. There are only about 300 known people in the world with her genetic condition, so when you whittle it down to those of the group who speak English – it’s a pretty small sample. I have consulted her pediatrician, medical home clinic, pulmonologist, geneticist, neurologist, physical therapist... even MY and my parent’s PCP’s. Here’s the problem – they all defer to Dr. Mc and say if it were their own kid they would not let anyone else but him do the treatment. Like I said – the guy seems to be a legend or something. I’ve been informed Dr. Mc created something called the “Shilla Technique†for treating scoli , was a past president of the Scoliosis Research Society, did his residency at Harvard and was on a show on the Discovery channel about scoliosis. I guess down yonder here in Arkansas, anyone who went to Harvard AND has been on TV for goodness sakes is the best thing since Wonder Bread and Miracle Whip, and is not to be questioned. J I agree – we need to find a doc that is experienced in very special cases. Does anyone have any physicians they know of who might fit that bill? Again, THANK YOU ALL soooooooooooo much for all the input & support! Glenda GrimmettLegacy Capital Group LLC From: Tame Olson [mailto:dazies2001@...] Sent: Tuesday, November 08, 2011 3:18 PMinfantile scoliosis treatment Subject: Re: Scared & Confused This is all very complex to say the least.... Could you travel for a second opinion? Maybe a second opinion would help you get to firmer ground and explore all options. My son also has low tone .... You have a lot going on. Can you consult another specialist maybe a geneticist or dev pediatrician??? Is there a support group out there for the genetic condition? If so, are any of their kids in casts?What does the PT think? Hmmm. Let me think about this one. You obviously need a doc w experience w very special cases.TameSent from my iPhoneOn Nov 8, 2011, at 12:21 PM, "Glenda Grimmett" <glendag@...> wrote:Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda GrimmettMom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2011 Report Share Posted November 9, 2011 Hey Glenda! As we discussed before I k iw all about Dr. Mc and how he doesn't like us little women! My sons PC actually told me " He may be an ass, but he is the best ass there is " I can't believe these things sometimes. Dr. Mc actually told us last week that he doesn't believe in casting, it doesn't work and it won't work for my little boy. I currently ha e our application in to Shriners in South Carolina. said there is a Dr. there whondoes EDF casting. Maybe you should call them and get your app in also. Especially since we don't really have any other options here in Little Rock. > > Hello, All. > > > > I have been reading posts for a while and you all seem like such a > supportive & helpful group - so I am coming to you scared, lost & > confused. I need some insight and advice, pretty please! I have gone > back and forth and have reviewed pro's & con's and all I have managed to > do is make myself borderline certifiable! > > > > Some quick background - my daughter Eliza is 11 months old (9 adjusted - > she was a preemie). She has a partial chromosomal duplication called > tetrasomy 18p. She also has scoliosis and torticollis. She was making > some progress towards sitting independently, but has since regressed - I > feel like this has to do with her scoli worsening. Her lower body has > gained a lot of strength, and she will bear quite a bit of weight on her > legs & kicks like Chuck Norris, but her upper body is a totally > different story. Her back seems so twisted, and on top of that her > muscle tone is so low that the top half feels like a floppy rag doll. > She hates being on her tummy, but when I make her do tummy time, she can > get her head up, but cannot push up at all. Her arms feel like wet > noodles, and even if she had the muscular ability, pushing up seems to > be painful to her. Again - I think this is related to the scoli. She > is in a developmental daycare and receives PT, OT and speech therapy. > > > > You may recall from previous posts - we are one of the families in > Arkansas who see the reportedly brilliant yet sexist and offensive > orthopedic surgeon - (I will call him Dr. Mc) - and there are not any > other viable ortho options close by. Travelling is difficult, as I have > used up all of my time off - E gets sick frequently and has a few > hospitalizations - one that lasted for almost 4 months. However, if I > was certain travelling to another state would be the best thing for her, > I'd find a way to make it happen. > > > > I have yet to get an accurate measurement of her curve - the last x-ray > taken was with her brace on, so I don't see how that could be accurate. > However, at that time, our ortho said " it looked to be about 23 " . > Well, it looks to be a lot worse than that to me, as her spine is all > the way on the left side of her body and looks like it's running into > her shoulder blade. When I asked about the RVAD, he told me that " that > measurement wasn't applicable here " - not sure what THAT means. When I > asked about a MRI, I was told it was not needed. (I have since been > able to get another doc to order one, but it will not happen until > MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at > least consider his opinion since he is so widely respected, not just > locally, but on a national basis) is adamant that casting would be > detrimental to my daughter's overall health and development. She has > not physically seen the ortho since August - I've just been > communicating by phone trying to get information from the nurse. Here > are his issues with casting: > > > > 1. She has developmental delays, hypotonia (low muscle tone), and > Dr. Mc says the cast would make it more difficult for her to progress > physically and could cause long-term deficits in this area. > > > > 2. She has a lot of other medical issues. One is extremely severe > reflux - she has a g-tube, and a Nissen procedure. Even after the > Nissen, she is still prone to violent retching and vomiting. Her TLSO > brace is fairly soft, but even it can make these symptoms worse. Dr. Mc > feels a cast could cause her pain and possibly injure her if she were to > retch/vomit violently, and is concerned that we would not be able to > quickly remove the cast if this happened. He also is concerned about > the constant pressure on her chest & abdominal area worsening the > reflux, retching & vomiting. > > > > 3. She also has laryngotracheal malacia and obstructive sleep apnea > (which make her require oxygen at night-time), and is prone to frequent > respiratory infections & aspiration pneumonia. He says this is a > contraindication for casting as well, as a cast could possibly aggravate > these issues. > > > > I just don't know who to listen to. I can see that her curve is > progressing, and I think I am starting to see rotation (is that what > makes one hip higher?). When I rub her back it feels like there is > definitely more than one curve going on . She also has been sleeping in > the most strange and convoluted positions - if THAT is comfortable to > her, then I think the curve must be worse & more complex than what Dr. > Mc originally thought, or what he led me to believe, anyway. > > > > I want to do what is best for her, but I have to say, he does have some > valid points - all of which were concerns of mine before he even > brought them up. But - the watch-and-wait treatment doesn't feel right > to me either. The possibility of achieving a cure for her scoliosis is > a definite valid point as well - I just don't want to end up causing > even more damage or a possible injury if I did end up deciding to cast > her. I have heard on here so many times to go with your gut, but my gut > is going in so many different directions it feels like its tied itself > into a gigantic knot. > > > > So basically, I feel like I'm frozen & stuck and do not know which way > to go. Has anyone else had a child with these issues, or a similar > experience in being torn in half trying to decide which option is best > for your child? Are there any braces available that don't just hold a > curve, but can also correct it? Any help or insight would be much > appreciated. We have another appointment with the ortho on November 14, > so I'd like to get my ducks in a row so I can confront this without > turning into an emotional mess. > > > > I'm so sorry for the long dissertation - I'm never sure what info might > help or be pertinent when talking to doctors or email groups. J Thank > you so much in advance for your help. > > > > Glenda Grimmett > > Mom to Eliza - 11 months_,_._,___ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2011 Report Share Posted November 9, 2011 Hi Glenda,My advice is seek a 2nd, 3rd opinion from highly experienced Early Treatment docs. Doc’s that have been treating infants w/ the Mehta Method for more than 1 or 2 yrs. Please give me a ring. Lets get a few packets together w/ Eliza’s most relevant info/films and get them sent off the most experienced ET docs in the country. Only, they will know the pros and cons of treating your darling. I know you don’t want to leave any stone unturned in Elizas care and I want to help.Liv gets out at 2 today but I will have my cell on me and we can figure out a plan.Please call me if you can.Warmly,HRH(303) 507 2485 From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Glenda GrimmettSent: Tuesday, November 08, 2011 11:22 AMinfantile scoliosis treatment Subject: Scared & Confused Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23”. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here” – not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda GrimmettMom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2011 Report Share Posted November 10, 2011 Dear Glenda, I am so glad that you found our group. We all understand that scared and confused feeling... I am not a doctor and I'm sure that the ortho that you are going to knows much more than I do about your daughter's medical conditions and what a cast would or wouldn't do for her. Having said that, it never hurts to get a second, third and fourth opinion, if that is what it takes for you to become comfortable with the choices that you will need to make. I did that myself before I decided to give casting a try. You can send your daughter's medical info to any of the Mehta trained docs on our site and they will review your case and make a recommendation to you by phone before you set up an appointmaent to actually see them. I did that also. I know that our casting doc has dealt with quite a few complicated cases, including children with respiratory and severe GI issues. It's possible that you may try casting and spend a few days in the hospital to see if your daughter can tolerate the cast.... It can always be taken off. That's just a suggestion to bring up to the orthos that you speak with and/or see. And, perhaps, casting would not suit your daughter because of her medical issues, but by contacting these very seasoned docs at least you would know one way or another. Please let me know if you have any other questions and know that I am thinking of you and your daughter. Please also keep me posted and lots of luck..... - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III From: Glenda Grimmett <glendag@...>Subject: Scared & Confusedinfantile scoliosis treatment Date: Tuesday, November 8, 2011, 6:21 PM Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda Grimmett Mom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Glenda, My daughter has a chromosome disorder and g-tube as well, so I can tell you that yes the cast affected her already slow development and made her reflux worse. We feed her several times a day over an hour each time and by pump at night to keep vomiting to a minimum, but it still happens 3-4 times a week. That being said, the cast is important because it has stopped the progression of her scoliosis and has put off surgery for a while. I would recommend contacting Shriners Hospital in Salt Lake City - they are always honest about what they can and can't do. I wish you the best in your journey... mom to Audrey, casts and brace from SLC > > Hello, All. > > > > I have been reading posts for a while and you all seem like such a > supportive & helpful group - so I am coming to you scared, lost & > confused. I need some insight and advice, pretty please! I have gone > back and forth and have reviewed pro's & con's and all I have managed to > do is make myself borderline certifiable! > > > > Some quick background - my daughter Eliza is 11 months old (9 adjusted - > she was a preemie). She has a partial chromosomal duplication called > tetrasomy 18p. She also has scoliosis and torticollis. She was making > some progress towards sitting independently, but has since regressed - I > feel like this has to do with her scoli worsening. Her lower body has > gained a lot of strength, and she will bear quite a bit of weight on her > legs & kicks like Chuck Norris, but her upper body is a totally > different story. Her back seems so twisted, and on top of that her > muscle tone is so low that the top half feels like a floppy rag doll. > She hates being on her tummy, but when I make her do tummy time, she can > get her head up, but cannot push up at all. Her arms feel like wet > noodles, and even if she had the muscular ability, pushing up seems to > be painful to her. Again - I think this is related to the scoli. She > is in a developmental daycare and receives PT, OT and speech therapy. > > > > You may recall from previous posts - we are one of the families in > Arkansas who see the reportedly brilliant yet sexist and offensive > orthopedic surgeon - (I will call him Dr. Mc) - and there are not any > other viable ortho options close by. Travelling is difficult, as I have > used up all of my time off - E gets sick frequently and has a few > hospitalizations - one that lasted for almost 4 months. However, if I > was certain travelling to another state would be the best thing for her, > I'd find a way to make it happen. > > > > I have yet to get an accurate measurement of her curve - the last x-ray > taken was with her brace on, so I don't see how that could be accurate. > However, at that time, our ortho said " it looked to be about 23 " . > Well, it looks to be a lot worse than that to me, as her spine is all > the way on the left side of her body and looks like it's running into > her shoulder blade. When I asked about the RVAD, he told me that " that > measurement wasn't applicable here " - not sure what THAT means. When I > asked about a MRI, I was told it was not needed. (I have since been > able to get another doc to order one, but it will not happen until > MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at > least consider his opinion since he is so widely respected, not just > locally, but on a national basis) is adamant that casting would be > detrimental to my daughter's overall health and development. She has > not physically seen the ortho since August - I've just been > communicating by phone trying to get information from the nurse. Here > are his issues with casting: > > > > 1. She has developmental delays, hypotonia (low muscle tone), and > Dr. Mc says the cast would make it more difficult for her to progress > physically and could cause long-term deficits in this area. > > > > 2. She has a lot of other medical issues. One is extremely severe > reflux - she has a g-tube, and a Nissen procedure. Even after the > Nissen, she is still prone to violent retching and vomiting. Her TLSO > brace is fairly soft, but even it can make these symptoms worse. Dr. Mc > feels a cast could cause her pain and possibly injure her if she were to > retch/vomit violently, and is concerned that we would not be able to > quickly remove the cast if this happened. He also is concerned about > the constant pressure on her chest & abdominal area worsening the > reflux, retching & vomiting. > > > > 3. She also has laryngotracheal malacia and obstructive sleep apnea > (which make her require oxygen at night-time), and is prone to frequent > respiratory infections & aspiration pneumonia. He says this is a > contraindication for casting as well, as a cast could possibly aggravate > these issues. > > > > I just don't know who to listen to. I can see that her curve is > progressing, and I think I am starting to see rotation (is that what > makes one hip higher?). When I rub her back it feels like there is > definitely more than one curve going on . She also has been sleeping in > the most strange and convoluted positions - if THAT is comfortable to > her, then I think the curve must be worse & more complex than what Dr. > Mc originally thought, or what he led me to believe, anyway. > > > > I want to do what is best for her, but I have to say, he does have some > valid points - all of which were concerns of mine before he even > brought them up. But - the watch-and-wait treatment doesn't feel right > to me either. The possibility of achieving a cure for her scoliosis is > a definite valid point as well - I just don't want to end up causing > even more damage or a possible injury if I did end up deciding to cast > her. I have heard on here so many times to go with your gut, but my gut > is going in so many different directions it feels like its tied itself > into a gigantic knot. > > > > So basically, I feel like I'm frozen & stuck and do not know which way > to go. Has anyone else had a child with these issues, or a similar > experience in being torn in half trying to decide which option is best > for your child? Are there any braces available that don't just hold a > curve, but can also correct it? Any help or insight would be much > appreciated. We have another appointment with the ortho on November 14, > so I'd like to get my ducks in a row so I can confront this without > turning into an emotional mess. > > > > I'm so sorry for the long dissertation - I'm never sure what info might > help or be pertinent when talking to doctors or email groups. J Thank > you so much in advance for your help. > > > > Glenda Grimmett > > Mom to Eliza - 11 months_,_._,___ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Okay, I am beyond confused! I just got back from an ortho appointment with Dr. Mc. Since she was seen in August the curve has progressed from 28 to 45. NOW, he wants to do the MRI and talk about putting her in a cast. However, before he came in, his resident told me that casting is ineffective in neuromuscular scoliosis. I do not know what to think! I’m guessing the cast he wants to look at is different than a Mehta cast? He said it would be on for a few months then she would be put in a brace. I have no idea what’s going on here! Glenda GrimmettLegacy Capital Group LLC From: Randi Nagel [mailto:mommyloveshertwins24@...] Sent: Tuesday, November 08, 2011 4:33 PMinfantile scoliosis treatment Subject: Re: Scared & Confused Hi,I know that you have had a few reply's and mine isn't any more informative. It just broke my heart when I read your message.I agree that you should at least send your information to another hospital. It can't hurt to get a second opinion. My daughter Avery doesn't have any genetic conditions, but was born 10 weeks early, had pretty bad reflux (which she took medication for, but no tubes), torticollis and scoliosis (started at 39 degrees). We found that her torticollis improved greatly as her spine did and as far as the reflux, I would say that as her spine got better so did that. I have heard that a cast puts less pressure on the abdomen than a brace as well. I hope you find the answers you are looking for...or at least the peace of mind. (HUGS) RandiMom to Avery and 2yrs. Avery torticollis resolved and scoliosis down to 22* out of cast from 39*. Going for 4th cast on Monday. From: Glenda Grimmett <glendag@...>infantile scoliosis treatment Sent: Tuesday, November 8, 2011 12:21 PMSubject: Scared & Confused Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23â€. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here†– not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda GrimmettMom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Glenda, Everyone has an opinion on EVERYTHING...I'm guessing what the resident said was just that his opinion. (an educated opinion, but an opinion none the less) There are some docs out there that don't believe in casting period even though it had documented success! My peds dr growing up didn't believe in flu shots (strange but true)...they are just people with opinions. So decide if you trust your Dr. Mc. & if you do follow through, if not second opinion time. Sounds like with all you have going on an MRI might be a good idea anyway? Maybe you could get answers you need? Putting a child under for an MRI is not fun or easy so make sure you really believe it is necessary...in my sons case it was as it is for most kids before casting. My son doesn't have any other concerns beyond his scoliosis so for us casting was not a difficult decision. We figure it was the only option being given to us with documented results that didn't involve cutting my son open. If it doesn't work then surgery is still on option, where as the casting option doesn't last forever. Best of luck & don't stop seeking answers! Amber mommy to Levi 31* down to 16/17* in cast > Okay, I am beyond confused! > > > > I just got back from an ortho appointment with Dr. Mc. Since she was seen > in August the curve has progressed from 28 to 45. NOW, he wants to do the > MRI and talk about putting her in a cast. However, before he came in, his > resident told me that casting is ineffective in neuromuscular scoliosis. > I do not know what to think! I’m guessing the cast he wants to look at > is different than a Mehta cast? He said it would be on for a few months > then she would be put in a brace. I have no idea what’s going on here! > > > > Glenda Grimmett > > Legacy Capital Group LLC > > > > From: Randi Nagel [mailto:mommyloveshertwins24@...] > Sent: Tuesday, November 08, 2011 4:33 PM > infantile scoliosis treatment > Subject: Re: Scared & Confused > > > > > > Hi, > > I know that you have had a few reply's and mine isn't any more > informative. It just broke my heart when I read your message. > > I agree that you should at least send your information to another > hospital. It can't hurt to get a second opinion. > > > > My daughter Avery doesn't have any genetic conditions, but was born 10 > weeks early, had pretty bad reflux (which she took medication for, but no > tubes), torticollis and scoliosis (started at 39 degrees). > > > > We found that her torticollis improved greatly as her spine did and as far > as the reflux, I would say that as her spine got better so did that. I > have heard that a cast puts less pressure on the abdomen than a brace as > well. > > > > I hope you find the answers you are looking for...or at least the peace of > mind. > > > > (HUGS) > > > > Randi > > Mom to Avery and 2yrs. Avery torticollis resolved and scoliosis > down to 22* out of cast from 39*. Going for 4th cast on Monday. > > > > From: Glenda Grimmett <glendag@...> > infantile scoliosis treatment > Sent: Tuesday, November 8, 2011 12:21 PM > Subject: Scared & Confused > > > > Hello, All. > > > > I have been reading posts for a while and you all seem like such a > supportive & helpful group – so I am coming to you scared, lost & > confused. I need some insight and advice, pretty please! I have gone > back and forth and have reviewed pro’s & con’s and all I have managed > to do is make myself borderline certifiable! > > > > Some quick background - my daughter Eliza is 11 months old (9 adjusted – > she was a preemie). She has a partial chromosomal duplication called > tetrasomy 18p. She also has scoliosis and torticollis. She was making > some progress towards sitting independently, but has since regressed – I > feel like this has to do with her scoli worsening. Her lower body has > gained a lot of strength, and she will bear quite a bit of weight on her > legs & kicks like Chuck Norris, but her upper body is a totally different > story. Her back seems so twisted, and on top of that her muscle tone is > so low that the top half feels like a floppy rag doll. She hates being on > her tummy, but when I make her do tummy time, she can get her head up, but > cannot push up at all. Her arms feel like wet noodles, and even if she > had the muscular ability, pushing up seems to be painful to her. Again > – I think this is related to the scoli. She is in a developmental > daycare and receives PT, OT and speech therapy. > > > > You may recall from previous posts – we are one of the families in > Arkansas who see the reportedly brilliant yet sexist and offensive > orthopedic surgeon – (I will call him Dr. Mc) – and there are not any > other viable ortho options close by. Travelling is difficult, as I have > used up all of my time off - E gets sick frequently and has a few > hospitalizations – one that lasted for almost 4 months. However, if I > was certain travelling to another state would be the best thing for her, > I’d find a way to make it happen. > > > > I have yet to get an accurate measurement of her curve – the last x-ray > taken was with her brace on, so I don’t see how that could be accurate. > However, at that time, our ortho said “it looked to be about 23â€. > Well, it looks to be a lot worse than that to me, as her spine is all the > way on the left side of her body and looks like it’s running into her > shoulder blade. When I asked about the RVAD, he told me that “that > measurement wasn’t applicable here†– not sure what THAT means. > When I asked about a MRI, I was told it was not needed. (I have since > been able to get another doc to order one, but it will not happen until > MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at > least consider his opinion since he is so widely respected, not just > locally, but on a national basis) is adamant that casting would be > detrimental to my daughter’s overall health and development. She has > not physically seen the ortho since August – I’ve just been > communicating by phone trying to get information from the nurse. Here are > his issues with casting: > > > > 1. She has developmental delays, hypotonia (low muscle tone), and Dr. > Mc says the cast would make it more difficult for her to progress > physically and could cause long-term deficits in this area. > > > > 2. She has a lot of other medical issues. One is extremely severe > reflux – she has a g-tube, and a Nissen procedure. Even after the > Nissen, she is still prone to violent retching and vomiting. Her TLSO > brace is fairly soft, but even it can make these symptoms worse. Dr. Mc > feels a cast could cause her pain and possibly injure her if she were to > retch/vomit violently, and is concerned that we would not be able to > quickly remove the cast if this happened. He also is concerned about the > constant pressure on her chest & abdominal area worsening the reflux, > retching & vomiting. > > > > 3. She also has laryngotracheal malacia and obstructive sleep apnea > (which make her require oxygen at night-time), and is prone to frequent > respiratory infections & aspiration pneumonia. He says this is a > contraindication for casting as well, as a cast could possibly aggravate > these issues. > > > > I just don’t know who to listen to. I can see that her curve is > progressing, and I think I am starting to see rotation (is that what makes > one hip higher?). When I rub her back it feels like there is definitely > more than one curve going on . She also has been sleeping in the most > strange and convoluted positions – if THAT is comfortable to her, then I > think the curve must be worse & more complex than what Dr. Mc originally > thought, or what he led me to believe, anyway. > > > > I want to do what is best for her, but I have to say, he does have some > valid points - all of which were concerns of mine before he even brought > them up. But – the watch-and-wait treatment doesn’t feel right to me > either. The possibility of achieving a cure for her scoliosis is a > definite valid point as well - I just don’t want to end up causing even > more damage or a possible injury if I did end up deciding to cast her. I > have heard on here so many times to go with your gut, but my gut is going > in so many different directions it feels like its tied itself into a > gigantic knot. > > > > So basically, I feel like I’m frozen & stuck and do not know which way > to go. Has anyone else had a child with these issues, or a similar > experience in being torn in half trying to decide which option is best for > your child? Are there any braces available that don’t just hold a > curve, but can also correct it? Any help or insight would be much > appreciated. We have another appointment with the ortho on November 14, > so I’d like to get my ducks in a row so I can confront this without > turning into an emotional mess. > > > > I’m so sorry for the long dissertation – I’m never sure what info > might help or be pertinent when talking to doctors or email groups. J > Thank you so much in advance for your help. > > > > Glenda Grimmett > > Mom to Eliza – 11 months_,_._,___ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 P.S. I'm sorry I don't know much about reflux & G tubes, but one thing that has surprised everyone (Docs too) with Levi's 1st cast is the amount of food he is now eating. He was what I would call a VERY picky eater. I would celebrate if he finished a whole Gerber yogurt. I thought it was just him being picky, but the day we got home from the 1st casting he didn't stop eating. They told us he would eat many small meals because of the pressure of the cast but he now eats double what he did before. I know the weight of the cast would burn more calories, but it seems to me it is more then that. I don't know if the scoli was pushing on his stomach & making it hard to eat or what but its so different now. Twice he has " vomited " a little after bending over too fast or something but it doesn't bug him at all in fact he just keeps playing without even telling me...gross! > Glenda, > Everyone has an opinion on EVERYTHING...I'm guessing what the resident > said was just that his opinion. (an educated opinion, but an opinion none > the less) There are some docs out there that don't believe in casting > period even though it had documented success! My peds dr growing up didn't > believe in flu shots (strange but true)...they are just people with > opinions. So decide if you trust your Dr. Mc. & if you do follow through, > if not second opinion time. Sounds like with all you have going on an MRI > might be a good idea anyway? Maybe you could get answers you need? > Putting a child under for an MRI is not fun or easy so make sure you > really believe it is necessary...in my sons case it was as it is for most > kids before casting. My son doesn't have any other concerns beyond his > scoliosis so for us casting was not a difficult decision. We figure it > was the only option being given to us with documented results that didn't > involve cutting my son open. If it doesn't work then surgery is still on > option, where as the casting option doesn't last forever. Best of luck & > don't stop seeking answers! > Amber > mommy to Levi 31* down to 16/17* in cast > > >> Okay, I am beyond confused! >> >> >> >> I just got back from an ortho appointment with Dr. Mc. Since she was >> seen >> in August the curve has progressed from 28 to 45. NOW, he wants to do >> the >> MRI and talk about putting her in a cast. However, before he came in, >> his >> resident told me that casting is ineffective in neuromuscular scoliosis. >> I do not know what to think! I’m guessing the cast he wants to look at >> is different than a Mehta cast? He said it would be on for a few months >> then she would be put in a brace. I have no idea what’s going on >> here! >> >> >> >> Glenda Grimmett >> >> Legacy Capital Group LLC >> >> >> >> From: Randi Nagel [mailto:mommyloveshertwins24@...] >> Sent: Tuesday, November 08, 2011 4:33 PM >> infantile scoliosis treatment >> Subject: Re: Scared & Confused >> >> >> >> >> >> Hi, >> >> I know that you have had a few reply's and mine isn't any more >> informative. It just broke my heart when I read your message. >> >> I agree that you should at least send your information to another >> hospital. It can't hurt to get a second opinion. >> >> >> >> My daughter Avery doesn't have any genetic conditions, but was born 10 >> weeks early, had pretty bad reflux (which she took medication for, but >> no >> tubes), torticollis and scoliosis (started at 39 degrees). >> >> >> >> We found that her torticollis improved greatly as her spine did and as >> far >> as the reflux, I would say that as her spine got better so did that. I >> have heard that a cast puts less pressure on the abdomen than a brace as >> well. >> >> >> >> I hope you find the answers you are looking for...or at least the peace >> of >> mind. >> >> >> >> (HUGS) >> >> >> >> Randi >> >> Mom to Avery and 2yrs. Avery torticollis resolved and scoliosis >> down to 22* out of cast from 39*. Going for 4th cast on Monday. >> >> >> >> From: Glenda Grimmett <glendag@...> >> infantile scoliosis treatment >> Sent: Tuesday, November 8, 2011 12:21 PM >> Subject: Scared & Confused >> >> >> >> Hello, All. >> >> >> >> I have been reading posts for a while and you all seem like such a >> supportive & helpful group – so I am coming to you scared, lost & >> confused. I need some insight and advice, pretty please! I have gone >> back and forth and have reviewed pro’s & con’s and all I have >> managed >> to do is make myself borderline certifiable! >> >> >> >> Some quick background - my daughter Eliza is 11 months old (9 adjusted >> – >> she was a preemie). She has a partial chromosomal duplication called >> tetrasomy 18p. She also has scoliosis and torticollis. She was making >> some progress towards sitting independently, but has since regressed – >> I >> feel like this has to do with her scoli worsening. Her lower body has >> gained a lot of strength, and she will bear quite a bit of weight on her >> legs & kicks like Chuck Norris, but her upper body is a totally >> different >> story. Her back seems so twisted, and on top of that her muscle tone is >> so low that the top half feels like a floppy rag doll. She hates being >> on >> her tummy, but when I make her do tummy time, she can get her head up, >> but >> cannot push up at all. Her arms feel like wet noodles, and even if she >> had the muscular ability, pushing up seems to be painful to her. Again >> – I think this is related to the scoli. She is in a developmental >> daycare and receives PT, OT and speech therapy. >> >> >> >> You may recall from previous posts – we are one of the families in >> Arkansas who see the reportedly brilliant yet sexist and offensive >> orthopedic surgeon – (I will call him Dr. Mc) – and there are not >> any >> other viable ortho options close by. Travelling is difficult, as I have >> used up all of my time off - E gets sick frequently and has a few >> hospitalizations – one that lasted for almost 4 months. However, if I >> was certain travelling to another state would be the best thing for her, >> I’d find a way to make it happen. >> >> >> >> I have yet to get an accurate measurement of her curve – the last >> x-ray >> taken was with her brace on, so I don’t see how that could be >> accurate. >> However, at that time, our ortho said “it looked to be about 23â€. >> Well, it looks to be a lot worse than that to me, as her spine is all >> the >> way on the left side of her body and looks like it’s running into her >> shoulder blade. When I asked about the RVAD, he told me that “that >> measurement wasn’t applicable here†– not sure what THAT means. >> When I asked about a MRI, I was told it was not needed. (I have since >> been able to get another doc to order one, but it will not happen until >> MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at >> least consider his opinion since he is so widely respected, not just >> locally, but on a national basis) is adamant that casting would be >> detrimental to my daughter’s overall health and development. She has >> not physically seen the ortho since August – I’ve just been >> communicating by phone trying to get information from the nurse. Here >> are >> his issues with casting: >> >> >> >> 1. She has developmental delays, hypotonia (low muscle tone), and >> Dr. >> Mc says the cast would make it more difficult for her to progress >> physically and could cause long-term deficits in this area. >> >> >> >> 2. She has a lot of other medical issues. One is extremely severe >> reflux – she has a g-tube, and a Nissen procedure. Even after the >> Nissen, she is still prone to violent retching and vomiting. Her TLSO >> brace is fairly soft, but even it can make these symptoms worse. Dr. Mc >> feels a cast could cause her pain and possibly injure her if she were to >> retch/vomit violently, and is concerned that we would not be able to >> quickly remove the cast if this happened. He also is concerned about >> the >> constant pressure on her chest & abdominal area worsening the reflux, >> retching & vomiting. >> >> >> >> 3. She also has laryngotracheal malacia and obstructive sleep apnea >> (which make her require oxygen at night-time), and is prone to frequent >> respiratory infections & aspiration pneumonia. He says this is a >> contraindication for casting as well, as a cast could possibly aggravate >> these issues. >> >> >> >> I just don’t know who to listen to. I can see that her curve is >> progressing, and I think I am starting to see rotation (is that what >> makes >> one hip higher?). When I rub her back it feels like there is definitely >> more than one curve going on . She also has been sleeping in the most >> strange and convoluted positions – if THAT is comfortable to her, then >> I >> think the curve must be worse & more complex than what Dr. Mc originally >> thought, or what he led me to believe, anyway. >> >> >> >> I want to do what is best for her, but I have to say, he does have some >> valid points - all of which were concerns of mine before he even >> brought >> them up. But – the watch-and-wait treatment doesn’t feel right to >> me >> either. The possibility of achieving a cure for her scoliosis is a >> definite valid point as well - I just don’t want to end up causing >> even >> more damage or a possible injury if I did end up deciding to cast her. >> I >> have heard on here so many times to go with your gut, but my gut is >> going >> in so many different directions it feels like its tied itself into a >> gigantic knot. >> >> >> >> So basically, I feel like I’m frozen & stuck and do not know which way >> to go. Has anyone else had a child with these issues, or a similar >> experience in being torn in half trying to decide which option is best >> for >> your child? Are there any braces available that don’t just hold a >> curve, but can also correct it? Any help or insight would be much >> appreciated. We have another appointment with the ortho on November 14, >> so I’d like to get my ducks in a row so I can confront this without >> turning into an emotional mess. >> >> >> >> I’m so sorry for the long dissertation – I’m never sure what info >> might help or be pertinent when talking to doctors or email groups. J >> Thank you so much in advance for your help. >> >> >> >> Glenda Grimmett >> >> Mom to Eliza – 11 months_,_._,___ >> >> >> >> >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Glenda, I know we haven't been on here long, but since we both Dr. M I should tell you that when I asked about EDF casting he said he (Dr. M) doesn't believe in it, it doesn't work and it won't work for my little boy. He also said that if it is really what we wanted he guessed he could do it, but it isn't EDF casting using the mehta method, and he doesn't use the frame associated with it. So, be warned and go with the correct info when you talk to him. If you aren't comfortable seek a 2nd opionion from someone who does deal with the issuses your baby has. It never hurts, we are driving all the way to south Carolina for a different Dr. Ultimately it's what you feel is right for your child. Good luck and keep me posted. Us Little Roxk moms have got to stick together and advocate for our kids. On the upside the Orthotics clinic in Little Rock is really interested in EDF casting and Mehta method. So, maybe we will eventually have someone here who believes. > > Glenda, > Everyone has an opinion on EVERYTHING...I'm guessing what the resident > said was just that his opinion. (an educated opinion, but an opinion none > the less) There are some docs out there that don't believe in casting > period even though it had documented success! My peds dr growing up didn't > believe in flu shots (strange but true)...they are just people with > opinions. So decide if you trust your Dr. Mc. & if you do follow through, > if not second opinion time. Sounds like with all you have going on an MRI > might be a good idea anyway? Maybe you could get answers you need? > Putting a child under for an MRI is not fun or easy so make sure you > really believe it is necessary...in my sons case it was as it is for most > kids before casting. My son doesn't have any other concerns beyond his > scoliosis so for us casting was not a difficult decision. We figure it > was the only option being given to us with documented results that didn't > involve cutting my son open. If it doesn't work then surgery is still on > option, where as the casting option doesn't last forever. Best of luck & > don't stop seeking answers! > Amber > mommy to Levi 31* down to 16/17* in cast > > > > Okay, I am beyond confused! > > > > > > > > I just got back from an ortho appointment with Dr. Mc. Since she was seen > > in August the curve has progressed from 28 to 45. NOW, he wants to do the > > MRI and talk about putting her in a cast. However, before he came in, his > > resident told me that casting is ineffective in neuromuscular scoliosis. > > I do not know what to think! I’m guessing the cast he wants to look at > > is different than a Mehta cast? He said it would be on for a few months > > then she would be put in a brace. I have no idea what’s going on here! > > > > > > > > Glenda Grimmett > > > > Legacy Capital Group LLC > > > > > > > > From: Randi Nagel [mailto:mommyloveshertwins24@...] > > Sent: Tuesday, November 08, 2011 4:33 PM > > infantile scoliosis treatment > > Subject: Re: Scared & Confused > > > > > > > > > > > > Hi, > > > > I know that you have had a few reply's and mine isn't any more > > informative. It just broke my heart when I read your message. > > > > I agree that you should at least send your information to another > > hospital. It can't hurt to get a second opinion. > > > > > > > > My daughter Avery doesn't have any genetic conditions, but was born 10 > > weeks early, had pretty bad reflux (which she took medication for, but no > > tubes), torticollis and scoliosis (started at 39 degrees). > > > > > > > > We found that her torticollis improved greatly as her spine did and as far > > as the reflux, I would say that as her spine got better so did that. I > > have heard that a cast puts less pressure on the abdomen than a brace as > > well. > > > > > > > > I hope you find the answers you are looking for...or at least the peace of > > mind. > > > > > > > > (HUGS) > > > > > > > > Randi > > > > Mom to Avery and 2yrs. Avery torticollis resolved and scoliosis > > down to 22* out of cast from 39*. Going for 4th cast on Monday. > > > > > > > > From: Glenda Grimmett <glendag@...> > > infantile scoliosis treatment > > Sent: Tuesday, November 8, 2011 12:21 PM > > Subject: Scared & Confused > > > > > > > > Hello, All. > > > > > > > > I have been reading posts for a while and you all seem like such a > > supportive & helpful group †" so I am coming to you scared, lost & > > confused. I need some insight and advice, pretty please! I have gone > > back and forth and have reviewed pro’s & con’s and all I have managed > > to do is make myself borderline certifiable! > > > > > > > > Some quick background - my daughter Eliza is 11 months old (9 adjusted †" > > she was a preemie). She has a partial chromosomal duplication called > > tetrasomy 18p. She also has scoliosis and torticollis. She was making > > some progress towards sitting independently, but has since regressed †" I > > feel like this has to do with her scoli worsening. Her lower body has > > gained a lot of strength, and she will bear quite a bit of weight on her > > legs & kicks like Chuck Norris, but her upper body is a totally different > > story. Her back seems so twisted, and on top of that her muscle tone is > > so low that the top half feels like a floppy rag doll. She hates being on > > her tummy, but when I make her do tummy time, she can get her head up, but > > cannot push up at all. Her arms feel like wet noodles, and even if she > > had the muscular ability, pushing up seems to be painful to her. Again > > †" I think this is related to the scoli. She is in a developmental > > daycare and receives PT, OT and speech therapy. > > > > > > > > You may recall from previous posts †" we are one of the families in > > Arkansas who see the reportedly brilliant yet sexist and offensive > > orthopedic surgeon †" (I will call him Dr. Mc) †" and there are not any > > other viable ortho options close by. Travelling is difficult, as I have > > used up all of my time off - E gets sick frequently and has a few > > hospitalizations †" one that lasted for almost 4 months. However, if I > > was certain travelling to another state would be the best thing for her, > > I’d find a way to make it happen. > > > > > > > > I have yet to get an accurate measurement of her curve †" the last x-ray > > taken was with her brace on, so I don’t see how that could be accurate. > > However, at that time, our ortho said “it looked to be about 23â€. > > Well, it looks to be a lot worse than that to me, as her spine is all the > > way on the left side of her body and looks like it’s running into her > > shoulder blade. When I asked about the RVAD, he told me that “that > > measurement wasn’t applicable here††" not sure what THAT means. > > When I asked about a MRI, I was told it was not needed. (I have since > > been able to get another doc to order one, but it will not happen until > > MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at > > least consider his opinion since he is so widely respected, not just > > locally, but on a national basis) is adamant that casting would be > > detrimental to my daughter’s overall health and development. She has > > not physically seen the ortho since August †" I’ve just been > > communicating by phone trying to get information from the nurse. Here are > > his issues with casting: > > > > > > > > 1. She has developmental delays, hypotonia (low muscle tone), and Dr. > > Mc says the cast would make it more difficult for her to progress > > physically and could cause long-term deficits in this area. > > > > > > > > 2. She has a lot of other medical issues. One is extremely severe > > reflux †" she has a g-tube, and a Nissen procedure. Even after the > > Nissen, she is still prone to violent retching and vomiting. Her TLSO > > brace is fairly soft, but even it can make these symptoms worse. Dr. Mc > > feels a cast could cause her pain and possibly injure her if she were to > > retch/vomit violently, and is concerned that we would not be able to > > quickly remove the cast if this happened. He also is concerned about the > > constant pressure on her chest & abdominal area worsening the reflux, > > retching & vomiting. > > > > > > > > 3. She also has laryngotracheal malacia and obstructive sleep apnea > > (which make her require oxygen at night-time), and is prone to frequent > > respiratory infections & aspiration pneumonia. He says this is a > > contraindication for casting as well, as a cast could possibly aggravate > > these issues. > > > > > > > > I just don’t know who to listen to. I can see that her curve is > > progressing, and I think I am starting to see rotation (is that what makes > > one hip higher?). When I rub her back it feels like there is definitely > > more than one curve going on . She also has been sleeping in the most > > strange and convoluted positions †" if THAT is comfortable to her, then I > > think the curve must be worse & more complex than what Dr. Mc originally > > thought, or what he led me to believe, anyway. > > > > > > > > I want to do what is best for her, but I have to say, he does have some > > valid points - all of which were concerns of mine before he even brought > > them up. But †" the watch-and-wait treatment doesn’t feel right to me > > either. The possibility of achieving a cure for her scoliosis is a > > definite valid point as well - I just don’t want to end up causing even > > more damage or a possible injury if I did end up deciding to cast her. I > > have heard on here so many times to go with your gut, but my gut is going > > in so many different directions it feels like its tied itself into a > > gigantic knot. > > > > > > > > So basically, I feel like I’m frozen & stuck and do not know which way > > to go. Has anyone else had a child with these issues, or a similar > > experience in being torn in half trying to decide which option is best for > > your child? Are there any braces available that don’t just hold a > > curve, but can also correct it? Any help or insight would be much > > appreciated. We have another appointment with the ortho on November 14, > > so I’d like to get my ducks in a row so I can confront this without > > turning into an emotional mess. > > > > > > > > I’m so sorry for the long dissertation †" I’m never sure what info > > might help or be pertinent when talking to doctors or email groups. J > > Thank you so much in advance for your help. > > > > > > > > Glenda Grimmett > > > > Mom to Eliza †" 11 months_,_._,___ > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Here is my take on this. If you see a doctor who is willing to do it but not sold. Run somewhere else. The reason they are not sold is that they are not doing it correctly and therefor not getting good correction. Time is crucial in treatment and I would suggest finding a doctor who believes in and gets great results! Make sure they are doing EDF casting with the Mehta method. Proper cut outs and application are key! Jenn Mommy to Cole & Max Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Glenda, I’m sorry your daughter has progressed. If Dr Mc wants to do the MRI, good! Someone commented to have a particular type of doctor interpret the results – I forget what kind. Will that person respond to this, please? You can have the MRI done through Dr. Mc, then take the results to another doctor for a second opinion. I know your daughter has other issues, so work with the people offering to help, and get the info together and send it off as soon as you can. I have also heard that casting is ineffective in neuromuscular scoliosis – but you need to ask, what does “effective” mean, that is, what is the goal in your daughter’s case? To get correction or to keep her curvature from getting worse? At the very least, call the office back and ask the resident to return your call and explain more fully what s/he meant. You deserve an answer! Has VEPTR been discussed as an option? I have heard that with some children with underlying syndromes or other medical issues, casting is not really an option. I think VEPTR can be performed earlier than rods…I am not an expert. Maybe someone else can chime in. Can you get some emergency leave to take your daughter to SC Shriners? I would pray/hope that your co-workers & supervisor would be super supportive and put your daughter’s care and your mental health & happiness before anything else!!! Sherry Scared & Confused Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23”. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here” – not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda Grimmett Mom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 A Neurosurgeon should interpret the MRI. I'm not the one who mentioned it, but I strongly agree with it. My son's MRI was read as "no evidence of tethered cord" and thankfully a neurosurgeon took a closer look and sure enough, he was tethered and had to be released. Ann Boros www.curvybaby.comjayann_24@... To: infantile scoliosis treatment From: svale88@...Date: Mon, 14 Nov 2011 17:39:12 -0500Subject: RE: Scared & Confused Glenda, I’m sorry your daughter has progressed. If Dr Mc wants to do the MRI, good! Someone commented to have a particular type of doctor interpret the results – I forget what kind. Will that person respond to this, please? You can have the MRI done through Dr. Mc, then take the results to another doctor for a second opinion. I know your daughter has other issues, so work with the people offering to help, and get the info together and send it off as soon as you can. I have also heard that casting is ineffective in neuromuscular scoliosis – but you need to ask, what does “effective” mean, that is, what is the goal in your daughter’s case? To get correction or to keep her curvature from getting worse? At the very least, call the office back and ask the resident to return your call and explain more fully what s/he meant. You deserve an answer! Has VEPTR been discussed as an option? I have heard that with some children with underlying syndromes or other medical issues, casting is not really an option. I think VEPTR can be performed earlier than rods…I am not an expert. Maybe someone else can chime in. Can you get some emergency leave to take your daughter to SC Shriners? I would pray/hope that your co-workers & supervisor would be super supportive and put your daughter’s care and your mental health & happiness before anything else!!! Sherry Scared & Confused Hello, All. I have been reading posts for a while and you all seem like such a supportive & helpful group – so I am coming to you scared, lost & confused. I need some insight and advice, pretty please! I have gone back and forth and have reviewed pro’s & con’s and all I have managed to do is make myself borderline certifiable! Some quick background - my daughter Eliza is 11 months old (9 adjusted – she was a preemie). She has a partial chromosomal duplication called tetrasomy 18p. She also has scoliosis and torticollis. She was making some progress towards sitting independently, but has since regressed – I feel like this has to do with her scoli worsening. Her lower body has gained a lot of strength, and she will bear quite a bit of weight on her legs & kicks like Chuck Norris, but her upper body is a totally different story. Her back seems so twisted, and on top of that her muscle tone is so low that the top half feels like a floppy rag doll. She hates being on her tummy, but when I make her do tummy time, she can get her head up, but cannot push up at all. Her arms feel like wet noodles, and even if she had the muscular ability, pushing up seems to be painful to her. Again – I think this is related to the scoli. She is in a developmental daycare and receives PT, OT and speech therapy. You may recall from previous posts – we are one of the families in Arkansas who see the reportedly brilliant yet sexist and offensive orthopedic surgeon – (I will call him Dr. Mc) – and there are not any other viable ortho options close by. Travelling is difficult, as I have used up all of my time off - E gets sick frequently and has a few hospitalizations – one that lasted for almost 4 months. However, if I was certain travelling to another state would be the best thing for her, I’d find a way to make it happen. I have yet to get an accurate measurement of her curve – the last x-ray taken was with her brace on, so I don’t see how that could be accurate. However, at that time, our ortho said “it looked to be about 23”. Well, it looks to be a lot worse than that to me, as her spine is all the way on the left side of her body and looks like it’s running into her shoulder blade. When I asked about the RVAD, he told me that “that measurement wasn’t applicable here” – not sure what THAT means. When I asked about a MRI, I was told it was not needed. (I have since been able to get another doc to order one, but it will not happen until MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at least consider his opinion since he is so widely respected, not just locally, but on a national basis) is adamant that casting would be detrimental to my daughter’s overall health and development. She has not physically seen the ortho since August – I’ve just been communicating by phone trying to get information from the nurse. Here are his issues with casting: 1. She has developmental delays, hypotonia (low muscle tone), and Dr. Mc says the cast would make it more difficult for her to progress physically and could cause long-term deficits in this area. 2. She has a lot of other medical issues. One is extremely severe reflux – she has a g-tube, and a Nissen procedure. Even after the Nissen, she is still prone to violent retching and vomiting. Her TLSO brace is fairly soft, but even it can make these symptoms worse. Dr. Mc feels a cast could cause her pain and possibly injure her if she were to retch/vomit violently, and is concerned that we would not be able to quickly remove the cast if this happened. He also is concerned about the constant pressure on her chest & abdominal area worsening the reflux, retching & vomiting. 3. She also has laryngotracheal malacia and obstructive sleep apnea (which make her require oxygen at night-time), and is prone to frequent respiratory infections & aspiration pneumonia. He says this is a contraindication for casting as well, as a cast could possibly aggravate these issues. I just don’t know who to listen to. I can see that her curve is progressing, and I think I am starting to see rotation (is that what makes one hip higher?). When I rub her back it feels like there is definitely more than one curve going on . She also has been sleeping in the most strange and convoluted positions – if THAT is comfortable to her, then I think the curve must be worse & more complex than what Dr. Mc originally thought, or what he led me to believe, anyway. I want to do what is best for her, but I have to say, he does have some valid points - all of which were concerns of mine before he even brought them up. But – the watch-and-wait treatment doesn’t feel right to me either. The possibility of achieving a cure for her scoliosis is a definite valid point as well - I just don’t want to end up causing even more damage or a possible injury if I did end up deciding to cast her. I have heard on here so many times to go with your gut, but my gut is going in so many different directions it feels like its tied itself into a gigantic knot. So basically, I feel like I’m frozen & stuck and do not know which way to go. Has anyone else had a child with these issues, or a similar experience in being torn in half trying to decide which option is best for your child? Are there any braces available that don’t just hold a curve, but can also correct it? Any help or insight would be much appreciated. We have another appointment with the ortho on November 14, so I’d like to get my ducks in a row so I can confront this without turning into an emotional mess. I’m so sorry for the long dissertation – I’m never sure what info might help or be pertinent when talking to doctors or email groups. J Thank you so much in advance for your help. Glenda Grimmett Mom to Eliza – 11 months_,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Thank you, Amber. Very much. Scared & Confused>>>> Hello, All.>>>> I have been reading posts for a while and you all seem like such a> supportive & helpful group – so I am coming to you scared, lost & > confused. I need some insight and advice, pretty please! I have gone> back and forth and have reviewed pro’s & con’s and all I have managed> to do is make myself borderline certifiable!>>>> Some quick background - my daughter Eliza is 11 months old (9 adjusted –> she was a preemie). She has a partial chromosomal duplication called> tetrasomy 18p. She also has scoliosis and torticollis. She was making> some progress towards sitting independently, but has since regressed – I> feel like this has to do with her scoli worsening. Her lower body has> gained a lot of strength, and she will bear quite a bit of weight on her> legs & kicks like Chuck Norris, but her upper body is a totally different> story. Her back seems so twisted, and on top of that her muscle tone is> so low that the top half feels like a floppy rag doll. She hates being on> her tummy, but when I make her do tummy time, she can get her head up, but> cannot push up at all. Her arms feel like wet noodles, and even if she> had the muscular ability, pushing up seems to be painful to her. Again> – I think this is related to the scoli. She is in a developmental> daycare and receives PT, OT and speech therapy.>>>> You may recall from previous posts – we are one of the families in> Arkansas who see the reportedly brilliant yet sexist and offensive> orthopedic surgeon – (I will call him Dr. Mc) – and there are not any> other viable ortho options close by. Travelling is difficult, as I have> used up all of my time off - E gets sick frequently and has a few> hospitalizations – one that lasted for almost 4 months. However, if I> was certain travelling to another state would be the best thing for her,> I’d find a way to make it happen.>>>> I have yet to get an accurate measurement of her curve – the last x-ray> taken was with her brace on, so I don’t see how that could be accurate.> However, at that time, our ortho said “it looked to be about 23â€Â.> Well, it looks to be a lot worse than that to me, as her spine is all the> way on the left side of her body and looks like it’s running into her> shoulder blade. When I asked about the RVAD, he told me that “that> measurement wasn’t applicable here†– not sure what THAT means.> When I asked about a MRI, I was told it was not needed. (I have since> been able to get another doc to order one, but it will not happen until> MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at> least consider his opinion since he is so widely respected, not just> locally, but on a national basis) is adamant that casting would be> detrimental to my daughter’s overall health and development. She has> not physically seen the ortho since August – I’ve just been> communicating by phone trying to get information from the nurse. Here are> his issues with casting:>>>> 1. She has developmental delays, hypotonia (low muscle tone), and Dr.> Mc says the cast would make it more difficult for her to progress> physically and could cause long-term deficits in this area.>>>> 2. She has a lot of other medical issues. One is extremely severe> reflux – she has a g-tube, and a Nissen procedure. Even after the> Nissen, she is still prone to violent retching and vomiting. Her TLSO> brace is fairly soft, but even it can make these symptoms worse. Dr. Mc> feels a cast could cause her pain and possibly injure her if she were to> retch/vomit violently, and is concerned that we would not be able to> quickly remove the cast if this happened. He also is concerned about the> constant pressure on her chest & abdominal area worsening the reflux,> retching & vomiting.>>>> 3. She also has laryngotracheal malacia and obstructive sleep apnea> (which make her require oxygen at night-time), and is prone to frequent> respiratory infections & aspiration pneumonia. He says this is a> contraindication for casting as well, as a cast could possibly aggravate> these issues.>>>> I just don’t know who to listen to. I can see that her curve is> progressing, and I think I am starting to see rotation (is that what makes> one hip higher?). When I rub her back it feels like there is definitely> more than one curve going on . She also has been sleeping in the most> strange and convoluted positions – if THAT is comfortable to her, then I> think the curve must be worse & more complex than what Dr. Mc originally> thought, or what he led me to believe, anyway.>>>> I want to do what is best for her, but I have to say, he does have some> valid points - all of which were concerns of mine before he even brought> them up. But – the watch-and-wait treatment doesn’t feel right to me> either. The possibility of achieving a cure for her scoliosis is a> definite valid point as well - I just don’t want to end up causing even> more damage or a possible injury if I did end up deciding to cast her. I> have heard on here so many times to go with your gut, but my gut is going> in so many different directions it feels like its tied itself into a> gigantic knot.>>>> So basically, I feel like I’m frozen & stuck and do not know which way> to go. Has anyone else had a child with these issues, or a similar> experience in being torn in half trying to decide which option is best for> your child? Are there any braces available that don’t just hold a> curve, but can also correct it? Any help or insight would be much> appreciated. We have another appointment with the ortho on November 14,> so I’d like to get my ducks in a row so I can confront this without> turning into an emotional mess.>>>> I’m so sorry for the long dissertation – I’m never sure what info> might help or be pertinent when talking to doctors or email groups. J> Thank you so much in advance for your help.>>>> Glenda Grimmett>> Mom to Eliza – 11 months_,_._,___>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Thanks, Amber, I’m actually relived about the MRI – I have been fighting for one for months. The last time I saw Dr. Mc he said the MRI wasn’t necessary and he didn’t want to expose her to radiation (which I didn’t think MRI’s used radiation, but okay). It is so hard to know who and what information to trust! Glenda GrimmettLegacy Capital Group LLC From: Amber Scholl [mailto:amber@...] Sent: Monday, November 14, 2011 12:52 PMinfantile scoliosis treatment Subject: RE: Scared & Confused Glenda,Everyone has an opinion on EVERYTHING...I'm guessing what the residentsaid was just that his opinion. (an educated opinion, but an opinion nonethe less) There are some docs out there that don't believe in castingperiod even though it had documented success! My peds dr growing up didn'tbelieve in flu shots (strange but true)...they are just people withopinions. So decide if you trust your Dr. Mc. & if you do follow through,if not second opinion time. Sounds like with all you have going on an MRImight be a good idea anyway? Maybe you could get answers you need? Putting a child under for an MRI is not fun or easy so make sure youreally believe it is necessary...in my sons case it was as it is for mostkids before casting. My son doesn't have any other concerns beyond hisscoliosis so for us casting was not a difficult decision. We figure itwas the only option being given to us with documented results that didn'tinvolve cutting my son open. If it doesn't work then surgery is still onoption, where as the casting option doesn't last forever. Best of luck & don't stop seeking answers!Ambermommy to Levi 31* down to 16/17* in cast> Okay, I am beyond confused!>>>> I just got back from an ortho appointment with Dr. Mc. Since she was seen> in August the curve has progressed from 28 to 45. NOW, he wants to do the> MRI and talk about putting her in a cast. However, before he came in, his> resident told me that casting is ineffective in neuromuscular scoliosis.> I do not know what to think! I’m guessing the cast he wants to look at> is different than a Mehta cast? He said it would be on for a few months> then she would be put in a brace. I have no idea what’s going on here!>>>> Glenda Grimmett>> Legacy Capital Group LLC>>>> From: Randi Nagel [mailto:mommyloveshertwins24@...]> Sent: Tuesday, November 08, 2011 4:33 PM> infantile scoliosis treatment > Subject: Re: Scared & Confused>>>>>> Hi,>> I know that you have had a few reply's and mine isn't any more> informative. It just broke my heart when I read your message.>> I agree that you should at least send your information to another> hospital. It can't hurt to get a second opinion.>>>> My daughter Avery doesn't have any genetic conditions, but was born 10> weeks early, had pretty bad reflux (which she took medication for, but no> tubes), torticollis and scoliosis (started at 39 degrees).>>>> We found that her torticollis improved greatly as her spine did and as far> as the reflux, I would say that as her spine got better so did that. I> have heard that a cast puts less pressure on the abdomen than a brace as> well.>>>> I hope you find the answers you are looking for...or at least the peace of> mind.>>>> (HUGS)>>>> Randi>> Mom to Avery and 2yrs. Avery torticollis resolved and scoliosis> down to 22* out of cast from 39*. Going for 4th cast on Monday.>>>> From: Glenda Grimmett <glendag@...>> infantile scoliosis treatment > Sent: Tuesday, November 8, 2011 12:21 PM> Subject: Scared & Confused>>>> Hello, All.>>>> I have been reading posts for a while and you all seem like such a> supportive & helpful group – so I am coming to you scared, lost & > confused. I need some insight and advice, pretty please! I have gone> back and forth and have reviewed pro’s & con’s and all I have managed> to do is make myself borderline certifiable!>>>> Some quick background - my daughter Eliza is 11 months old (9 adjusted –> she was a preemie). She has a partial chromosomal duplication called> tetrasomy 18p. She also has scoliosis and torticollis. She was making> some progress towards sitting independently, but has since regressed – I> feel like this has to do with her scoli worsening. Her lower body has> gained a lot of strength, and she will bear quite a bit of weight on her> legs & kicks like Chuck Norris, but her upper body is a totally different> story. Her back seems so twisted, and on top of that her muscle tone is> so low that the top half feels like a floppy rag doll. She hates being on> her tummy, but when I make her do tummy time, she can get her head up, but> cannot push up at all. Her arms feel like wet noodles, and even if she> had the muscular ability, pushing up seems to be painful to her. Again> – I think this is related to the scoli. She is in a developmental> daycare and receives PT, OT and speech therapy.>>>> You may recall from previous posts – we are one of the families in> Arkansas who see the reportedly brilliant yet sexist and offensive> orthopedic surgeon – (I will call him Dr. Mc) – and there are not any> other viable ortho options close by. Travelling is difficult, as I have> used up all of my time off - E gets sick frequently and has a few> hospitalizations – one that lasted for almost 4 months. However, if I> was certain travelling to another state would be the best thing for her,> I’d find a way to make it happen.>>>> I have yet to get an accurate measurement of her curve – the last x-ray> taken was with her brace on, so I don’t see how that could be accurate.> However, at that time, our ortho said “it looked to be about 23â€Â.> Well, it looks to be a lot worse than that to me, as her spine is all the> way on the left side of her body and looks like it’s running into her> shoulder blade. When I asked about the RVAD, he told me that “that> measurement wasn’t applicable here†– not sure what THAT means.> When I asked about a MRI, I was told it was not needed. (I have since> been able to get another doc to order one, but it will not happen until> MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at> least consider his opinion since he is so widely respected, not just> locally, but on a national basis) is adamant that casting would be> detrimental to my daughter’s overall health and development. She has> not physically seen the ortho since August – I’ve just been> communicating by phone trying to get information from the nurse. Here are> his issues with casting:>>>> 1. She has developmental delays, hypotonia (low muscle tone), and Dr.> Mc says the cast would make it more difficult for her to progress> physically and could cause long-term deficits in this area.>>>> 2. She has a lot of other medical issues. One is extremely severe> reflux – she has a g-tube, and a Nissen procedure. Even after the> Nissen, she is still prone to violent retching and vomiting. Her TLSO> brace is fairly soft, but even it can make these symptoms worse. Dr. Mc> feels a cast could cause her pain and possibly injure her if she were to> retch/vomit violently, and is concerned that we would not be able to> quickly remove the cast if this happened. He also is concerned about the> constant pressure on her chest & abdominal area worsening the reflux,> retching & vomiting.>>>> 3. She also has laryngotracheal malacia and obstructive sleep apnea> (which make her require oxygen at night-time), and is prone to frequent> respiratory infections & aspiration pneumonia. He says this is a> contraindication for casting as well, as a cast could possibly aggravate> these issues.>>>> I just don’t know who to listen to. I can see that her curve is> progressing, and I think I am starting to see rotation (is that what makes> one hip higher?). When I rub her back it feels like there is definitely> more than one curve going on . She also has been sleeping in the most> strange and convoluted positions – if THAT is comfortable to her, then I> think the curve must be worse & more complex than what Dr. Mc originally> thought, or what he led me to believe, anyway.>>>> I want to do what is best for her, but I have to say, he does have some> valid points - all of which were concerns of mine before he even brought> them up. But – the watch-and-wait treatment doesn’t feel right to me> either. The possibility of achieving a cure for her scoliosis is a> definite valid point as well - I just don’t want to end up causing even> more damage or a possible injury if I did end up deciding to cast her. I> have heard on here so many times to go with your gut, but my gut is going> in so many different directions it feels like its tied itself into a> gigantic knot.>>>> So basically, I feel like I’m frozen & stuck and do not know which way> to go. Has anyone else had a child with these issues, or a similar> experience in being torn in half trying to decide which option is best for> your child? Are there any braces available that don’t just hold a> curve, but can also correct it? Any help or insight would be much> appreciated. We have another appointment with the ortho on November 14,> so I’d like to get my ducks in a row so I can confront this without> turning into an emotional mess.>>>> I’m so sorry for the long dissertation – I’m never sure what info> might help or be pertinent when talking to doctors or email groups. J> Thank you so much in advance for your help.>>>> Glenda Grimmett>> Mom to Eliza – 11 months_,_._,___>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Glenda, I don't know about MRI's & radiation. I bet its something you could try to Google? I know radiation loads are a concern, but I thought more with excessive X rays? The biggest risk we were told for MRI & casting was general anesthesia. My son did fantastic with it both times. He was angry in recovery, but that was because he wanted us not because of the procedures. The nurses brought him back from the MRI holding him & wheeling the bed...handed him to me & said " he is a kid who really knows what he doesn't like " ...I believe she had a red spot on her forehead from what I'm guessing was a tippy launch...kinda funny now! Right after the MRI he wanted down to play & was angry about being treated like he was sick. The casting was a little different, but I think they gave him another medication to calm down in recovery because again he wanted us. He was riding around in a little tykes truck not even 2 hrs later. I just wanted to tell you this to help make you feel better...yes there is a small risk, but it really will be ok. Its not like I saved his hospital bracelets as a wonderful memento or anything, but we can laugh about it now. I truly hope you get the answers you are looking for & fingers crossed some good news too! Amber > Thanks, Amber, > > > > I’m actually relived about the MRI – I have been fighting for one for > months. The last time I saw Dr. Mc he said the MRI wasn’t necessary and > he didn’t want to expose her to radiation (which I didn’t think > MRI’s used radiation, but okay). > > > > It is so hard to know who and what information to trust! > > > > Glenda Grimmett > > Legacy Capital Group LLC > > > > From: Amber Scholl [mailto:amber@...] > Sent: Monday, November 14, 2011 12:52 PM > infantile scoliosis treatment > Subject: RE: Scared & Confused > > > > > > Glenda, > Everyone has an opinion on EVERYTHING...I'm guessing what the resident > said was just that his opinion. (an educated opinion, but an opinion none > the less) There are some docs out there that don't believe in casting > period even though it had documented success! My peds dr growing up > didn't > believe in flu shots (strange but true)...they are just people with > opinions. So decide if you trust your Dr. Mc. & if you do follow through, > if not second opinion time. Sounds like with all you have going on an MRI > might be a good idea anyway? Maybe you could get answers you need? > Putting a child under for an MRI is not fun or easy so make sure you > really believe it is necessary...in my sons case it was as it is for most > kids before casting. My son doesn't have any other concerns beyond his > scoliosis so for us casting was not a difficult decision. We figure it > was the only option being given to us with documented results that didn't > involve cutting my son open. If it doesn't work then surgery is still on > option, where as the casting option doesn't last forever. Best of luck & > don't stop seeking answers! > Amber > mommy to Levi 31* down to 16/17* in cast > >> Okay, I am beyond confused! >> >> >> >> I just got back from an ortho appointment with Dr. Mc. Since she was >> seen >> in August the curve has progressed from 28 to 45. NOW, he wants to do >> the >> MRI and talk about putting her in a cast. However, before he came in, >> his >> resident told me that casting is ineffective in neuromuscular >> scoliosis. >> I do not know what to think! I’m guessing the cast he wants to >> look at >> is different than a Mehta cast? He said it would be on for a few months >> then she would be put in a brace. I have no idea what’s going on >> here! >> >> >> >> Glenda Grimmett >> >> Legacy Capital Group LLC >> >> >> >> From: Randi Nagel [mailto:mommyloveshertwins24@... >> <mailto:mommyloveshertwins24%40> ] >> Sent: Tuesday, November 08, 2011 4:33 PM >> infantile scoliosis treatment >> <mailto:infantile scoliosis treatment%40> >> Subject: Re: Scared & Confused >> >> >> >> >> >> Hi, >> >> I know that you have had a few reply's and mine isn't any more >> informative. It just broke my heart when I read your message. >> >> I agree that you should at least send your information to another >> hospital. It can't hurt to get a second opinion. >> >> >> >> My daughter Avery doesn't have any genetic conditions, but was born 10 >> weeks early, had pretty bad reflux (which she took medication for, but >> no >> tubes), torticollis and scoliosis (started at 39 degrees). >> >> >> >> We found that her torticollis improved greatly as her spine did and as >> far >> as the reflux, I would say that as her spine got better so did that. I >> have heard that a cast puts less pressure on the abdomen than a brace >> as >> well. >> >> >> >> I hope you find the answers you are looking for...or at least the peace >> of >> mind. >> >> >> >> (HUGS) >> >> >> >> Randi >> >> Mom to Avery and 2yrs. Avery torticollis resolved and scoliosis >> down to 22* out of cast from 39*. Going for 4th cast on Monday. >> >> >> >> From: Glenda Grimmett <glendag@... <mailto:glendag%40lcgar.com> > >> infantile scoliosis treatment >> <mailto:infantile scoliosis treatment%40> >> Sent: Tuesday, November 8, 2011 12:21 PM >> Subject: Scared & Confused >> >> >> >> Hello, All. >> >> >> >> I have been reading posts for a while and you all seem like such a >> supportive & helpful group – so I am coming to you scared, lost >> & >> confused. I need some insight and advice, pretty please! I have gone >> back and forth and have reviewed pro’s & con’s and all I >> have managed >> to do is make myself borderline certifiable! >> >> >> >> Some quick background - my daughter Eliza is 11 months old (9 adjusted >> – >> she was a preemie). She has a partial chromosomal duplication called >> tetrasomy 18p. She also has scoliosis and torticollis. She was making >> some progress towards sitting independently, but has since regressed >> – I >> feel like this has to do with her scoli worsening. Her lower body has >> gained a lot of strength, and she will bear quite a bit of weight on >> her >> legs & kicks like Chuck Norris, but her upper body is a totally >> different >> story. Her back seems so twisted, and on top of that her muscle tone is >> so low that the top half feels like a floppy rag doll. She hates being >> on >> her tummy, but when I make her do tummy time, she can get her head up, >> but >> cannot push up at all. Her arms feel like wet noodles, and even if she >> had the muscular ability, pushing up seems to be painful to her. Again >> – I think this is related to the scoli. She is in a >> developmental >> daycare and receives PT, OT and speech therapy. >> >> >> >> You may recall from previous posts – we are one of the families >> in >> Arkansas who see the reportedly brilliant yet sexist and offensive >> orthopedic surgeon – (I will call him Dr. Mc) – and there >> are not any >> other viable ortho options close by. Travelling is difficult, as I have >> used up all of my time off - E gets sick frequently and has a few >> hospitalizations – one that lasted for almost 4 months. However, >> if I >> was certain travelling to another state would be the best thing for >> her, >> I’d find a way to make it happen. >> >> >> >> I have yet to get an accurate measurement of her curve – the last >> x-ray >> taken was with her brace on, so I don’t see how that could be >> accurate. >> However, at that time, our ortho said “it looked to be about >> 23â€Â. >> Well, it looks to be a lot worse than that to me, as her spine is all >> the >> way on the left side of her body and looks like it’s running into >> her >> shoulder blade. When I asked about the RVAD, he told me that >> “that >> measurement wasn’t applicable here†– not sure what >> THAT means. >> When I asked about a MRI, I was told it was not needed. (I have since >> been able to get another doc to order one, but it will not happen until >> MARCH!). Dr. Mc (who granted, is a jerk, but I feel like I need to at >> least consider his opinion since he is so widely respected, not just >> locally, but on a national basis) is adamant that casting would be >> detrimental to my daughter’s overall health and development. She >> has >> not physically seen the ortho since August – I’ve just >> been >> communicating by phone trying to get information from the nurse. Here >> are >> his issues with casting: >> >> >> >> 1. She has developmental delays, hypotonia (low muscle tone), and Dr. >> Mc says the cast would make it more difficult for her to progress >> physically and could cause long-term deficits in this area. >> >> >> >> 2. She has a lot of other medical issues. One is extremely severe >> reflux – she has a g-tube, and a Nissen procedure. Even after >> the >> Nissen, she is still prone to violent retching and vomiting. Her TLSO >> brace is fairly soft, but even it can make these symptoms worse. Dr. Mc >> feels a cast could cause her pain and possibly injure her if she were >> to >> retch/vomit violently, and is concerned that we would not be able to >> quickly remove the cast if this happened. He also is concerned about >> the >> constant pressure on her chest & abdominal area worsening the reflux, >> retching & vomiting. >> >> >> >> 3. She also has laryngotracheal malacia and obstructive sleep apnea >> (which make her require oxygen at night-time), and is prone to frequent >> respiratory infections & aspiration pneumonia. He says this is a >> contraindication for casting as well, as a cast could possibly >> aggravate >> these issues. >> >> >> >> I just don’t know who to listen to. I can see that her curve is >> progressing, and I think I am starting to see rotation (is that what >> makes >> one hip higher?). When I rub her back it feels like there is definitely >> more than one curve going on . She also has been sleeping in the most >> strange and convoluted positions – if THAT is comfortable to her, >> then I >> think the curve must be worse & more complex than what Dr. Mc >> originally >> thought, or what he led me to believe, anyway. >> >> >> >> I want to do what is best for her, but I have to say, he does have some >> valid points - all of which were concerns of mine before he even >> brought >> them up. But – the watch-and-wait treatment doesn’t feel >> right to me >> either. The possibility of achieving a cure for her scoliosis is a >> definite valid point as well - I just don’t want to end up >> causing even >> more damage or a possible injury if I did end up deciding to cast her. >> I >> have heard on here so many times to go with your gut, but my gut is >> going >> in so many different directions it feels like its tied itself into a >> gigantic knot. >> >> >> >> So basically, I feel like I’m frozen & stuck and do not know >> which way >> to go. Has anyone else had a child with these issues, or a similar >> experience in being torn in half trying to decide which option is best >> for >> your child? Are there any braces available that don’t just hold >> a >> curve, but can also correct it? Any help or insight would be much >> appreciated. We have another appointment with the ortho on November 14, >> so I’d like to get my ducks in a row so I can confront this >> without >> turning into an emotional mess. >> >> >> >> I’m so sorry for the long dissertation – I’m never >> sure what info >> might help or be pertinent when talking to doctors or email groups. J >> Thank you so much in advance for your help. >> >> >> >> Glenda Grimmett >> >> Mom to Eliza – 11 months_,_._,___ >> >> >> >> >> >> > > > > Quote Link to comment Share on other sites More sharing options...
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