Guest guest Posted November 16, 2011 Report Share Posted November 16, 2011 Glenda, My daughter Chloe has a chromosome 6 deletion. She also has neuromuscular issues which actually contribute to the scoliosis. She has been casted for 2.5 years and we have not gotten any corrections. HOWEVER,her curve has basically stayed the same. for us, that is worth it. she was progressing so rapidly, even in a brace, before we started casting. Surgery may still be inevitable for her but the longer we can put it off the better. she has adjusted really well. she is pretty delayed so it's hard to tell how much the cast slowed her down but she did learn to get around in it pretty well. she also learned how to climb up on the couch and walked shortly after her 3rd birtdhay. all in the cast! if it's possible, it would probably be a good idea to get a second opinion from a doctor that does the EDF mehta casting. i know you already have a lot on your plate so do the best you can, trust your guy and your child is very lucky to have you! xo Celeste (mom to Chloe, 4 years old, casted at Chicago Shriners) > > 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 16, 2011 Report Share Posted November 16, 2011 Doesnt sound like Mehtas EDF...early Treatment w/ EDF/Mehta is done on a 3-d frame and the series of casts are worn for solid block of time. This gives the spine, tissues & muscles time to learn how to grow in the more correct position. Hope this helps. HRH > 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 16, 2011 Report Share Posted November 16, 2011 AGREED! > 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 16, 2011 Report Share Posted November 16, 2011 I think shillas are being offered in that neck of the woods. Its my understanding and experience with my own daughter that distraction surgery should be delayed for as long as possible. This depends on the individual child of course and their presentation of scoliosis/rotation, etc... HRH > 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. :-) 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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