Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 I agree with what said, the rotation needs to be addressed. Also, I do agree it is the way the cast is applied. Thats why I " m pleased with the results we've had b/c our doctor applies Evan's cast on the specialzied AMIL frame and we have had no setbacks. This frame addresses the three dimensional curve, including rotation. I know that EACH kid is different and responds to treatment differently. Evan's RVAD and curvature were very high if you look at the age he started casting, if left untreated, we would've had no other option than surgery. I truly believe that some of these doctors are " toying " with the method and trying to change it in some way , but WHY change a tried and true method that works and is proven to work? I can attest to the fact that we've seen correction and achieved it. I wouldn't take my son anywhere that wasn't trained with the Mehta method and wasn't properly applying casts on the AMIL frame. That is what ISOP is trying to do, spread the means of knowledge about casting and help train more physicians on the PROPER technique and I think that is necessary given the stories we hear from parents accross the entire USA about the treatment their child is recieving and I think it is aimable as well. Thats just my opinion. babymaxpd wrote: , I would assume it would be the method the cast is put on to be assured there is no progression in the 12 week or so before changing the cast. My question would be: what is to be done in cases like Max's where in 30 days the curve has progressed back to pre-casting measurements? Should he still be left in the same cast that isn't holding the correction? Or should he be casted more frequently to decrease the opprtunity of progression over time? Anyone's feedback would be helpful. Thank you, Aekta > > > > We have been very happy with Dr. Thometz, although I know he would > not cast another member of this sites child.... > > > > ***I am curious as to why Dr. Thometz will not cast a child in > need, from this group? > > > > HRH > > New Member > > > > Hello, > > I'm new to the group. I'm very glad I found you - there's not a > lot of > > info. on infantile scoliosis out there. My son, Noah, has been > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > in > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > Noah > > is " right on the fence " as far as determining whether or not his > curve > > is likely to progress. We are to go back in 3 months to have a > new > > set of x-rays. If he is progressing - I will definately want to > > discuss casting as an option. A lot of what I'm reading has > indicated > > that Noah's numbers are not good, so I'm trying to prepare > myself for > > the worst without panicking. Any thoughts or advice is > appreciated. > > Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 I agree with what said, the rotation needs to be addressed. Also, I do agree it is the way the cast is applied. Thats why I " m pleased with the results we've had b/c our doctor applies Evan's cast on the specialzied AMIL frame and we have had no setbacks. This frame addresses the three dimensional curve, including rotation. I know that EACH kid is different and responds to treatment differently. Evan's RVAD and curvature were very high if you look at the age he started casting, if left untreated, we would've had no other option than surgery. I truly believe that some of these doctors are " toying " with the method and trying to change it in some way , but WHY change a tried and true method that works and is proven to work? I can attest to the fact that we've seen correction and achieved it. I wouldn't take my son anywhere that wasn't trained with the Mehta method and wasn't properly applying casts on the AMIL frame. That is what ISOP is trying to do, spread the means of knowledge about casting and help train more physicians on the PROPER technique and I think that is necessary given the stories we hear from parents accross the entire USA about the treatment their child is recieving and I think it is aimable as well. Thats just my opinion. babymaxpd wrote: , I would assume it would be the method the cast is put on to be assured there is no progression in the 12 week or so before changing the cast. My question would be: what is to be done in cases like Max's where in 30 days the curve has progressed back to pre-casting measurements? Should he still be left in the same cast that isn't holding the correction? Or should he be casted more frequently to decrease the opprtunity of progression over time? Anyone's feedback would be helpful. Thank you, Aekta > > > > We have been very happy with Dr. Thometz, although I know he would > not cast another member of this sites child.... > > > > ***I am curious as to why Dr. Thometz will not cast a child in > need, from this group? > > > > HRH > > New Member > > > > Hello, > > I'm new to the group. I'm very glad I found you - there's not a > lot of > > info. on infantile scoliosis out there. My son, Noah, has been > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > in > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > Noah > > is " right on the fence " as far as determining whether or not his > curve > > is likely to progress. We are to go back in 3 months to have a > new > > set of x-rays. If he is progressing - I will definately want to > > discuss casting as an option. A lot of what I'm reading has > indicated > > that Noah's numbers are not good, so I'm trying to prepare > myself for > > the worst without panicking. Any thoughts or advice is > appreciated. > > Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 I thought I might chime in as well. It seems to me that if Max's curve is returning in 30 days IN cast, then the cast is not being applied correctly, and in all honesty, Max may be lucky it is not getting even worse. A lot of ped. ortho. doc do casting for scoliosis, but like S. said, it doesn't sound like the rotation of the curve is being addressed. I think the only way to this being corrected is by using the correct size traction table. Because scoliosis is 3 dimensional, it seems to me there is no other way. Pushing and pulling with hands would only correct a two dimensioanl curve which scoliosis is not. In terms of time in a cast. Cole's cast was changed every 8-9 weeks. He did beautifully with those times, until the last few casts. I felt like he was just staying around the 12 degree mark. We decided to push the last cast for 3 1/2 months and that is where we finally got the last bit of casting correction (5 degrees out of cast). So I really do believe the longer the better, and if the cast is applied properly, the curve should not return....especially in cast. Just my two cents. /Cole " D. Esser " wrote: I was referring to Aekta and Max and remembered that you had a bad experience. I am very curious about his comment on casting and wonder if it was because in his opinion Max had a rigid curve. He is not Mehta trained, but Dr. Mehta did see our daughter at the Philly ETTP and said that our daughter is not a typical scoliosis kid. She thinks that her scoliosis is muscular based. We had muscle biopsy tests done and she does not have any known disorder--which is good and yet still very frustrating because it is clear that she does have some type of neuro/muscular disorder--a rare un-named one according to our geneticist and neurologist. With that said, we opted to stay with Dr. Thometz over switching to Philly for casting for 2 reasons. 1. Convenience, or busy child does not fly well nor ride well on long car trips and 2. Dr. Thometz gets the same results (he got her to a zero in cast every time--the last time he even pushed her 2 degrees the opposite way). Dr. Thometz does not use the Mehta type of table. I honestly don't know what kind of table (if any) he uses. I do know he pushes and holds her in place while the team casts and wraps. I also know that our daughter is not the only kid he's casted. When she was first diagnosed our pediatrician told us that she had just sent another infant (8 months old) to him and that he casted her and she was doing great. I never followed up on who that was because at that point we were at the watch and wait at 19 degrees. I agree with you on the not so good staff--I have often left there wanting to cry--however I will say that was only recently--he's had staff turnover with the exception of Annette--the beloved PA. Also it's only the scheduling front desk people. When you do casting it is a different team which has always been wonderful. I think once his clerical team gets the hang of how it works it should improve. We've been there 3 years and it has only been bad since Nov. All of that said I am happy with the work he does and willing to deal with the other issues for him. Also we are now in a brace which Dr. Mehta said was a good one--and it was made by the Children's brace person. Aekta I know you are happy with your doc in Chicago, but one thing that Dr. Thometz does differently than most--which might benefit Max and which your doc may be willing to do-- is he changes the cast every 30 days. His philosophy is that you do your best to correct, and then in 30 days push it to do better. Our first go around our daughter was not so flexible and it took 3 casts to get her to 0. He left her at 0 for one month and then took it off. Doesn't Max start curving in his cast after 30 days? Maybe if you could get your doctor to change it every 30 days you could get better correction? I hope I have answered all of your questions. Our next visit is April 24. I will let you know if the staff situation has improved. Because her muscles are weaker than most and her curve is flexible I have asked him to be prepared to discuss what will happen if she curves again (does anyone know if Mehta has a cut off age that she stops casting at?) and what he thinks about staples. I'll let you know what he says. ________________________________ From: infantile_scoliosis on behalf of babymaxpd Sent: Sat 4/14/2007 3:54 PM To: infantile_scoliosis Subject: Re: ??? I think was referring to Max. When we saw Dr. Thometz last summer at 12 months of age, he said Max's curve was very rigid (which Dr. Sturm-Shriner's Chicago has indicated and proved otherwise). Dr. Thometz did not want to recommend surgery at 12 months of age. When I asked about casting he said " we can try, but I've never really done it before. " We didn't want Max to be his experimental case. His comment really confuses me as 's child is casted by him. , Dr. Thometz may be quiet and I agree not the best bedside manner, but I really wasn't pleased with our experience all together with Children's Milwaukee from support staff to providers. I do have to say it was a hot summer friday afternoon; who knows it could have been a rough week? His Physician Assitant was awesome. If it wasn't for her I may have left there in tears. Was Dr. Thometz trained by Dr. Mehta; or has he attended any of the ETTP? I am just interested in knowing our resources, especially for us here in the midwest as we have had a challengng time locating an orthopedist who wanted and knew how to cast. All in all, there are few doctors out there who are able to help our children with casting and Bless each one of them. Aekta > > We have been very happy with Dr. Thometz, although I know he would not cast another member of this sites child.... > > ***I am curious as to why Dr. Thometz will not cast a child in need, from this group? > > HRH > New Member > > Hello, > I'm new to the group. I'm very glad I found you - there's not a lot of > info. on infantile scoliosis out there. My son, Noah, has been > diagnosed with Infantile Scoliosis. He is 21 months old. We were > referred by his pediatrican to Dr. Lonstein at TC Spine Center in > Mpls. I'm told he is a good doctor. We've had one appt. so far. > Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah > is " right on the fence " as far as determining whether or not his curve > is likely to progress. We are to go back in 3 months to have a new > set of x-rays. If he is progressing - I will definately want to > discuss casting as an option. A lot of what I'm reading has indicated > that Noah's numbers are not good, so I'm trying to prepare myself for > the worst without panicking. Any thoughts or advice is appreciated. > Thanks! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 I thought I might chime in as well. It seems to me that if Max's curve is returning in 30 days IN cast, then the cast is not being applied correctly, and in all honesty, Max may be lucky it is not getting even worse. A lot of ped. ortho. doc do casting for scoliosis, but like S. said, it doesn't sound like the rotation of the curve is being addressed. I think the only way to this being corrected is by using the correct size traction table. Because scoliosis is 3 dimensional, it seems to me there is no other way. Pushing and pulling with hands would only correct a two dimensioanl curve which scoliosis is not. In terms of time in a cast. Cole's cast was changed every 8-9 weeks. He did beautifully with those times, until the last few casts. I felt like he was just staying around the 12 degree mark. We decided to push the last cast for 3 1/2 months and that is where we finally got the last bit of casting correction (5 degrees out of cast). So I really do believe the longer the better, and if the cast is applied properly, the curve should not return....especially in cast. Just my two cents. /Cole " D. Esser " wrote: I was referring to Aekta and Max and remembered that you had a bad experience. I am very curious about his comment on casting and wonder if it was because in his opinion Max had a rigid curve. He is not Mehta trained, but Dr. Mehta did see our daughter at the Philly ETTP and said that our daughter is not a typical scoliosis kid. She thinks that her scoliosis is muscular based. We had muscle biopsy tests done and she does not have any known disorder--which is good and yet still very frustrating because it is clear that she does have some type of neuro/muscular disorder--a rare un-named one according to our geneticist and neurologist. With that said, we opted to stay with Dr. Thometz over switching to Philly for casting for 2 reasons. 1. Convenience, or busy child does not fly well nor ride well on long car trips and 2. Dr. Thometz gets the same results (he got her to a zero in cast every time--the last time he even pushed her 2 degrees the opposite way). Dr. Thometz does not use the Mehta type of table. I honestly don't know what kind of table (if any) he uses. I do know he pushes and holds her in place while the team casts and wraps. I also know that our daughter is not the only kid he's casted. When she was first diagnosed our pediatrician told us that she had just sent another infant (8 months old) to him and that he casted her and she was doing great. I never followed up on who that was because at that point we were at the watch and wait at 19 degrees. I agree with you on the not so good staff--I have often left there wanting to cry--however I will say that was only recently--he's had staff turnover with the exception of Annette--the beloved PA. Also it's only the scheduling front desk people. When you do casting it is a different team which has always been wonderful. I think once his clerical team gets the hang of how it works it should improve. We've been there 3 years and it has only been bad since Nov. All of that said I am happy with the work he does and willing to deal with the other issues for him. Also we are now in a brace which Dr. Mehta said was a good one--and it was made by the Children's brace person. Aekta I know you are happy with your doc in Chicago, but one thing that Dr. Thometz does differently than most--which might benefit Max and which your doc may be willing to do-- is he changes the cast every 30 days. His philosophy is that you do your best to correct, and then in 30 days push it to do better. Our first go around our daughter was not so flexible and it took 3 casts to get her to 0. He left her at 0 for one month and then took it off. Doesn't Max start curving in his cast after 30 days? Maybe if you could get your doctor to change it every 30 days you could get better correction? I hope I have answered all of your questions. Our next visit is April 24. I will let you know if the staff situation has improved. Because her muscles are weaker than most and her curve is flexible I have asked him to be prepared to discuss what will happen if she curves again (does anyone know if Mehta has a cut off age that she stops casting at?) and what he thinks about staples. I'll let you know what he says. ________________________________ From: infantile_scoliosis on behalf of babymaxpd Sent: Sat 4/14/2007 3:54 PM To: infantile_scoliosis Subject: Re: ??? I think was referring to Max. When we saw Dr. Thometz last summer at 12 months of age, he said Max's curve was very rigid (which Dr. Sturm-Shriner's Chicago has indicated and proved otherwise). Dr. Thometz did not want to recommend surgery at 12 months of age. When I asked about casting he said " we can try, but I've never really done it before. " We didn't want Max to be his experimental case. His comment really confuses me as 's child is casted by him. , Dr. Thometz may be quiet and I agree not the best bedside manner, but I really wasn't pleased with our experience all together with Children's Milwaukee from support staff to providers. I do have to say it was a hot summer friday afternoon; who knows it could have been a rough week? His Physician Assitant was awesome. If it wasn't for her I may have left there in tears. Was Dr. Thometz trained by Dr. Mehta; or has he attended any of the ETTP? I am just interested in knowing our resources, especially for us here in the midwest as we have had a challengng time locating an orthopedist who wanted and knew how to cast. All in all, there are few doctors out there who are able to help our children with casting and Bless each one of them. Aekta > > We have been very happy with Dr. Thometz, although I know he would not cast another member of this sites child.... > > ***I am curious as to why Dr. Thometz will not cast a child in need, from this group? > > HRH > New Member > > Hello, > I'm new to the group. I'm very glad I found you - there's not a lot of > info. on infantile scoliosis out there. My son, Noah, has been > diagnosed with Infantile Scoliosis. He is 21 months old. We were > referred by his pediatrican to Dr. Lonstein at TC Spine Center in > Mpls. I'm told he is a good doctor. We've had one appt. so far. > Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah > is " right on the fence " as far as determining whether or not his curve > is likely to progress. We are to go back in 3 months to have a new > set of x-rays. If he is progressing - I will definately want to > discuss casting as an option. A lot of what I'm reading has indicated > that Noah's numbers are not good, so I'm trying to prepare myself for > the worst without panicking. Any thoughts or advice is appreciated. > Thanks! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Max's rotation is significant and I think he is not using the frame recommended by Dr. Mehta. This does make sense that the rotation needs to be addressed before the curve can be corrected/improved. Thank you for the info. Aekta > > > > > > We have been very happy with Dr. Thometz, although I know he > would > > not cast another member of this sites child.... > > > > > > ***I am curious as to why Dr. Thometz will not cast a child in > > need, from this group? > > > > > > HRH > > > New Member > > > > > > Hello, > > > I'm new to the group. I'm very glad I found you - there's not a > > lot of > > > info. on infantile scoliosis out there. My son, Noah, has been > > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > > in > > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > > Noah > > > is " right on the fence " as far as determining whether or not his > > curve > > > is likely to progress. We are to go back in 3 months to have a > > new > > > set of x-rays. If he is progressing - I will definately want to > > > discuss casting as an option. A lot of what I'm reading has > > indicated > > > that Noah's numbers are not good, so I'm trying to prepare > > myself for > > > the worst without panicking. Any thoughts or advice is > > appreciated. > > > Thanks! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Aekta, This is interesting timing and this post isn’t just aimed at Aekta. I am on the Alumni for the Shriners Hospital in Chicago, and at one of their mtgs not to long ago they were asking about if there was a special need at Shriners in Chicago that they could help pay for or if not too expensive pay all of it, this sounds like something we or I could mention to the members. I only get the minutes because the drive is too far to make the meetings but we keep in contact by email. Let me know what you all think. Betty -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 268.18.26/752 - Release Date: 4/8/2007 8:34 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Aekta, This is interesting timing and this post isn’t just aimed at Aekta. I am on the Alumni for the Shriners Hospital in Chicago, and at one of their mtgs not to long ago they were asking about if there was a special need at Shriners in Chicago that they could help pay for or if not too expensive pay all of it, this sounds like something we or I could mention to the members. I only get the minutes because the drive is too far to make the meetings but we keep in contact by email. Let me know what you all think. Betty -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 268.18.26/752 - Release Date: 4/8/2007 8:34 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 Betty, If you could make that happen, it would be a blessing to many families and children. I can't wait to see what the final outcome of all this is. /Cole Betty Hicks wrote: Aekta, This is interesting timing and this post isn’t just aimed at Aekta. I am on the Alumni for the Shriners Hospital in Chicago, and at one of their mtgs not to long ago they were asking about if there was a special need at Shriners in Chicago that they could help pay for or if not too expensive pay all of it, this sounds like something we or I could mention to the members. I only get the minutes because the drive is too far to make the meetings but we keep in contact by email. Let me know what you all think. Betty -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 268.18.26/752 - Release Date: 4/8/2007 8:34 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 Betty, If you could make that happen, it would be a blessing to many families and children. I can't wait to see what the final outcome of all this is. /Cole Betty Hicks wrote: Aekta, This is interesting timing and this post isn’t just aimed at Aekta. I am on the Alumni for the Shriners Hospital in Chicago, and at one of their mtgs not to long ago they were asking about if there was a special need at Shriners in Chicago that they could help pay for or if not too expensive pay all of it, this sounds like something we or I could mention to the members. I only get the minutes because the drive is too far to make the meetings but we keep in contact by email. Let me know what you all think. Betty -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 268.18.26/752 - Release Date: 4/8/2007 8:34 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 Betty, It would be wonderful if they would buy an AMIL frame for Chicago!!!! Shellie Betty Hicks wrote: Aekta, This is interesting timing and this post isn’t just aimed at Aekta. I am on the Alumni for the Shriners Hospital in Chicago, and at one of their mtgs not to long ago they were asking about if there was a special need at Shriners in Chicago that they could help pay for or if not too expensive pay all of it, this sounds like something we or I could mention to the members. I only get the minutes because the drive is too far to make the meetings but we keep in contact by email. Let me know what you all think. Betty -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 268.18.26/752 - Release Date: 4/8/2007 8:34 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 I also agree with that it could be the rotation. And possibly the way the cast is applied, BUT I want to chime in on another issue that bothers me often. Ms. Mehta vs the others I am taking my son to one of the " others " that as you said, is " toying " with the method. We go to Texas ish Rite Hospital in Dallas, Texas. No the hospital nor 's doctor have been trained by Ms. Mehta. And they do not use the AMIL casting frame. 's doctor does " toy " with her method. He uses his own version of it. ish Rite is VERY aware of her and her WONDERFUL work, but for whatever reason has not had a desire to be trained by her. I am stating all this to say that ish Rite and possibly other hospitals out there are doing good despite being trained by Ms. Mehta. When I first joined the group I very quickly found out that I was taking my son to a hospital that would not be able to help him. Because they did not use the Mehta techniques or the AMIL casting frame. This was my first impression after joining the group. And just days away from getting his 1st cast. We stayed at ish Rite and it continued to bother me that we were doing no good although we were seeing correction...........only because most of you view Ms. Mehta's techniques as the only way to help your child. I know MANY of you have had GREAT results by the doctors at Shriner's in Erie and SLC(by doctors who have been trained by Ms. Mehta)and that is precisely why we contacted Dr. for a 2nd opinion. I was surprised to hear that Dr. thought we are in a good place and even said if it were him he would stay with what we are doing. Maybe ish Rite is on to something. Just in a different way than what Shriner's has done. We are seeing correction and a " Mehta " trained doctor approves of this treatment. Sounds like Dr. is thinking outside the box. I guess what I am trying to say is there are " others " out there helping little ones. We have to remember that Ms. Mehta has opened a door for many doctors to see what early treatment can do. No they may not do her exact techniques or use the AMIL casting frame, but it is possible that they can help children with Infantile Scoliosis. has improved from 34 degrees to 19 degrees and is in his 4th cast. True, ish Rite does things very different than Shriner's. It has taken me until now to realize that it is OK. We are seeing correction and to me that is all that matters. We feel blessed by Dr. ' comments and ultimately know it is all in the hands of God. I hope I didn't come across as being rude...................this is just my opinion. Tasha Mommy of twin boys- and 24mths Fort Worth, Texas wrote: I agree with what said, the rotation needs to be addressed. Also, I do agree it is the way the cast is applied. Thats why I " m pleased with the results we've had b/c our doctor applies Evan's cast on the specialzied AMIL frame and we have had no setbacks. This frame addresses the three dimensional curve, including rotation. I know that EACH kid is different and responds to treatment differently. Evan's RVAD and curvature were very high if you look at the age he started casting, if left untreated, we would've had no other option than surgery. I truly believe that some of these doctors are " toying " with the method and trying to change it in some way , but WHY change a tried and true method that works and is proven to work? I can attest to the fact that we've seen correction and achieved it. I wouldn't take my son anywhere that wasn't trained with the Mehta method and wasn't properly applying casts on the AMIL frame. That is what ISOP is trying to do, spread the means of knowledge about casting and help train more physicians on the PROPER technique and I think that is necessary given the stories we hear from parents accross the entire USA about the treatment their child is recieving and I think it is aimable as well. Thats just my opinion. babymaxpd wrote: , I would assume it would be the method the cast is put on to be assured there is no progression in the 12 week or so before changing the cast. My question would be: what is to be done in cases like Max's where in 30 days the curve has progressed back to pre-casting measurements? Should he still be left in the same cast that isn't holding the correction? Or should he be casted more frequently to decrease the opprtunity of progression over time? Anyone's feedback would be helpful. Thank you, Aekta > > > > We have been very happy with Dr. Thometz, although I know he would > not cast another member of this sites child.... > > > > ***I am curious as to why Dr. Thometz will not cast a child in > need, from this group? > > > > HRH > > New Member > > > > Hello, > > I'm new to the group. I'm very glad I found you - there's not a > lot of > > info. on infantile scoliosis out there. My son, Noah, has been > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > in > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > Noah > > is " right on the fence " as far as determining whether or not his > curve > > is likely to progress. We are to go back in 3 months to have a > new > > set of x-rays. If he is progressing - I will definately want to > > discuss casting as an option. A lot of what I'm reading has > indicated > > that Noah's numbers are not good, so I'm trying to prepare > myself for > > the worst without panicking. Any thoughts or advice is > appreciated. > > Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Hi Tasha, I do not think you are coming off rude. I think the problem is that many doctors in the US will not even consider casting as an option to treat infantile scoliosis. 2 of the 4 doctors we saw would never cast (both in the state of WI). 1 of the 4 said he could try. And fortunately the 4th took great interest in casting as a treatment method and comfortable doing it. Yes, the " other " doctors are helping our children with getting correction by " toying " with Dr. Mehta's method. But here's my concern as a parent being in heathcare for the past 15 years: what is the long term effects of the " other " doctor's method in 1 month, 1 year, or 10 years? With Dr. Metha's method there is some level of history and follow-up with patients she treated 30 years ago. This reassures me as a parent. I have seen doctors " toy " around in other areas, and the outcome may not be the same. And when dealing with the spine, the core structure of one's body, all the reassurance I can get the better. I strongly believe the parents on this group are advocating the Shriners Erie/SLC because they are confident in the quality of care their children are receiving not because the " other " doctors aren't capable. I believe these doctors cared enough to learn from the best. They didn't have to, they wanted to. My question would be to all the " other " doctors, why not consider learning Dr. Mehta's method of casting. She flies from another country 1-2 times a year at the age of 80 years willing to teach any doctor interested in wanting to help our children. Is it location? Is it cost? Is their time too valuable? Or is it easier to " toy " around and see what happens? Our doctor flew to see Dr. Mehta. I'll be honest, if Dr. Sturm did not attend the ETTP in Erie last fall, I would not be letting him cast Max. I would love to see the results on a AMIL frame and willing to consider flying him to SLC/Erie at any cost. My views are just food for thought. And I don't think anyone was intentionally trying to say ish Rite could not help , I think parents were more confident that Shriners Erie/SLC could help based on their experiences. I am so happy that 's curve is correcting with casting. It's great you feel comfortable and confident with his doctor. I get very hopeful when I hear stories like 's. But I know every child situation can be a little different. How was & 's 2 year birthday party? I'm sure they had a great time. Aekta > > > > > > We have been very happy with Dr. Thometz, although I know he > would > > not cast another member of this sites child.... > > > > > > ***I am curious as to why Dr. Thometz will not cast a child in > > need, from this group? > > > > > > HRH > > > New Member > > > > > > Hello, > > > I'm new to the group. I'm very glad I found you - there's not a > > lot of > > > info. on infantile scoliosis out there. My son, Noah, has been > > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > > in > > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > > Noah > > > is " right on the fence " as far as determining whether or not his > > curve > > > is likely to progress. We are to go back in 3 months to have a > > new > > > set of x-rays. If he is progressing - I will definately want to > > > discuss casting as an option. A lot of what I'm reading has > > indicated > > > that Noah's numbers are not good, so I'm trying to prepare > > myself for > > > the worst without panicking. Any thoughts or advice is > > appreciated. > > > Thanks! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Betty, This would be a GREAT idea. Please let me know what I can do to help with this process. I've read a bit about the Shriner's Chicago alumni. I can talk with Dr. Sturm if you'd think that would help. I'll make any calls or send any e-mails/letters. I know he currently has a handful of patients ( and I'm sure more to come) who can benefit from this. Thanks, Aekta > > Aekta, > > > > This is interesting timing and this post isn't just aimed at Aekta. I am on > the Alumni for the Shriners Hospital in Chicago, and at one of their mtgs > not to long ago they were asking about if there was a special need at > Shriners in Chicago that they could help pay for or if not too expensive pay > all of it, this sounds like something we or I could mention to the members. > I only get the minutes because the drive is too far to make the meetings but > we keep in contact by email. Let me know what you all think. > > > > Betty > > > -- > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.5.446 / Virus Database: 268.18.26/752 - Release Date: 4/8/2007 > 8:34 PM > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Aekta, First of all let me say that I am a supporter of Ms. Mehta and her work. Sorry if I didn't make that more clear. OK I guess bottom line is why did a " Mehta " trained doctor look at all of 's Xrays and medical records and feel confident that we are doing good where we are going now? And tell us if it were him he would stay. That is where I am confused. I just knew that Dr. would see everything and say, No good. I was shocked and then it gave me hope. So how am I to feel? Do I trust Dr. , an experienced Mehta trained doctor? Would he just feed us a line of crap because he doesn't want to treat another child? I feel like I can trust him since he is experienced and has been trained by the BEST! And most importantly so many on the group talk very highly of him. You all are my support in this journey. So how would you feel? The boys bday was GREAT! Lots of new stuff and a little blood shed for the day. No big deal................ feel and busted his nose using his new lawn mower. BOYS!! The balloons were a bigger hit than any toy. Tasha Mommy of twin boys- and 24mths Fort Worth, Texas babymaxpd wrote: Hi Tasha, I do not think you are coming off rude. I think the problem is that many doctors in the US will not even consider casting as an option to treat infantile scoliosis. 2 of the 4 doctors we saw would never cast (both in the state of WI). 1 of the 4 said he could try. And fortunately the 4th took great interest in casting as a treatment method and comfortable doing it. Yes, the " other " doctors are helping our children with getting correction by " toying " with Dr. Mehta's method. But here's my concern as a parent being in heathcare for the past 15 years: what is the long term effects of the " other " doctor's method in 1 month, 1 year, or 10 years? With Dr. Metha's method there is some level of history and follow-up with patients she treated 30 years ago. This reassures me as a parent. I have seen doctors " toy " around in other areas, and the outcome may not be the same. And when dealing with the spine, the core structure of one's body, all the reassurance I can get the better. I strongly believe the parents on this group are advocating the Shriners Erie/SLC because they are confident in the quality of care their children are receiving not because the " other " doctors aren't capable. I believe these doctors cared enough to learn from the best. They didn't have to, they wanted to. My question would be to all the " other " doctors, why not consider learning Dr. Mehta's method of casting. She flies from another country 1-2 times a year at the age of 80 years willing to teach any doctor interested in wanting to help our children. Is it location? Is it cost? Is their time too valuable? Or is it easier to " toy " around and see what happens? Our doctor flew to see Dr. Mehta. I'll be honest, if Dr. Sturm did not attend the ETTP in Erie last fall, I would not be letting him cast Max. I would love to see the results on a AMIL frame and willing to consider flying him to SLC/Erie at any cost. My views are just food for thought. And I don't think anyone was intentionally trying to say ish Rite could not help , I think parents were more confident that Shriners Erie/SLC could help based on their experiences. I am so happy that 's curve is correcting with casting. It's great you feel comfortable and confident with his doctor. I get very hopeful when I hear stories like 's. But I know every child situation can be a little different. How was & 's 2 year birthday party? I'm sure they had a great time. Aekta > > > > > > We have been very happy with Dr. Thometz, although I know he > would > > not cast another member of this sites child.... > > > > > > ***I am curious as to why Dr. Thometz will not cast a child in > > need, from this group? > > > > > > HRH > > > New Member > > > > > > Hello, > > > I'm new to the group. I'm very glad I found you - there's not a > > lot of > > > info. on infantile scoliosis out there. My son, Noah, has been > > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > > in > > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > > Noah > > > is " right on the fence " as far as determining whether or not his > > curve > > > is likely to progress. We are to go back in 3 months to have a > > new > > > set of x-rays. If he is progressing - I will definately want to > > > discuss casting as an option. A lot of what I'm reading has > > indicated > > > that Noah's numbers are not good, so I'm trying to prepare > > myself for > > > the worst without panicking. Any thoughts or advice is > > appreciated. > > > Thanks! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Just so we are clear on this; Dr. Mehta did not invent casting, she introduced Early Treatment and using the childs rapid rate of growth to correct scoliosis, gently.... While figuring this out, she was able to specialize these little plaster jackets for her very young patients and determined over 25 years what works and what doesnt.. Its difficult for docs without a smaller frame, or no frame at all, to apply POP jackets. The plaster dries fast, and with the smaller sized frame they have more time to concentrate on applying the most effective cast. Simple as that. I would also like to mention that having the proper windows trimmed out of the jacket is very important. The properly trimmed window in front allows for chest expansion and the one in back improves over-all body shape, and in mild cases may address rotation. Olivia had many old fashioned casts applied before ISOP brought Dr. Mehta out to train on the principles of Early Treatment, and I can see clearly her chest wall deformities. While I am still very grateful to her wonderful doc for applying these casts, I wish she would have had the opportunity to experience Early Treatment and POP jackets done on a smaller frame, and I certainly wish that she had the proper windows cut out. Remember, Olivia never had the opportunity to be treated early, so by the time she was 2yrs old, her curve(s) were at approx. 100 degrees. She couldnt just have a series of jackets that lasted a year, she lived in and out of casts for many years, post halo. There is a window of time to do this right, and that decision can only be made by the parents. This group is dedicated to Early Treatment with POP jackets. This group was developed to share information, and hopefully assist parents in making the best choices possible for their child. Early treatment is new in the orthopaedic world, so its normal that they are not all doing the same thing. ISOP advocates POP jackets done on a smaller frame, because we work closely with the doc that had the article published and has dedicated her carreer to Early Treatment and the proper application of these specialized little jackets. Hope this helps. HRH New Member > > > > Hello, > > I'm new to the group. I'm very glad I found you - there's not a > lot of > > info. on infantile scoliosis out there. My son, Noah, has been > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > in > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > Noah > > is " right on the fence " as far as determining whether or not his > curve > > is likely to progress. We are to go back in 3 months to have a > new > > set of x-rays. If he is progressing - I will definately want to > > discuss casting as an option. A lot of what I'm reading has > indicated > > that Noah's numbers are not good, so I'm trying to prepare > myself for > > the worst without panicking. Any thoughts or advice is > appreciated. > > Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Tasha, I don't think anyone ever said your doctor wasn't doing a good job. I recall several people, myself included, being very happy that Dr. felt you were getting good treatment and that was getting better. " ish Rite and it continued to bother me that we were doing no good although we were seeing correction...........only because most of you view Ms. Mehta's techniques as the only way to help your child. " I distinctly remember that you were concerned about 's treatment because you were getting conflicting information on 's in cast and out of cast numbers from your doctor's staff which is what led you to ask doctor S to review 's films. So, I do think it is unfair to say that we caused you to doubt the treatment you were getting. I never heard anyone say you shouldn't be going to ish Rite. The fact is that there are doctors who have casted other kids and not used the correct techniques and those children did not have good results (problems with deformities due to incorrectly cut window holes, etc.). I always recommend SLC or Erie because I know they have the proper training in a technique that has had a scientific study that proves it is effective. I also recommend them because they have the proper equipment and they are free. I also know they have casted many children with and therefore have a lot of experience. That doesn't mean I think ish Rite is a bad place to get treatment - obviously they are doing great things for your son. Noelle (12-2-01) Ian (8-15-04) New Member > > > > > > Hello, > > > I'm new to the group. I'm very glad I found you - there's not a > > lot of > > > info. on infantile scoliosis out there. My son, Noah, has been > > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > > in > > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > > Noah > > > is " right on the fence " as far as determining whether or not his > > curve > > > is likely to progress. We are to go back in 3 months to have a > > new > > > set of x-rays. If he is progressing - I will definately want to > > > discuss casting as an option. A lot of what I'm reading has > > indicated > > > that Noah's numbers are not good, so I'm trying to prepare > > myself for > > > the worst without panicking. Any thoughts or advice is > > appreciated. > > > Thanks! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Oh boy........me and my opinions. , I don't think I ever said anyone specifically said our doctor wasn't doing any good. That was just an impression " I " got from the group......that if you are not going to a Mehta trained doctor it wouldn't do any good. No one ever came out and said that. Again that is an impression " I " got. And yes I also recall you and others being happy about what Dr. had to say about 's treatment. And yes I did have concerns about ish Rite. I am not denying that and that is why we called Shriners for a 2nd opinion. I am sorry you think it is unfair that I felt confused about 's treatment because of the group's views. That is how I felt and the impression I got. Which again led us to get a 2nd opinion. And again was surprised and blessed by what Dr. had to say. Sure right now I am confused as to why a Mehta trained doc would approve of 's treatment if it is not what he is doing. All I know to do at this point is turn it over to God and be happy is improving. I didn't mean to open a can of worms. I just needed to vent like everyone else does from time to time. No harm done I hope. I do cherish this group and all the great parents here. Tasha Mommy of twin boys- and 24mths Fort Worth, Texas > > > > > > > > We have been very happy with Dr. Thometz, although I know he > > would > > > not cast another member of this sites child.... > > > > > > > > ***I am curious as to why Dr. Thometz will not cast a child > in > > > need, from this group? > > > > > > > > HRH > > > > New Member > > > > > > > > Hello, > > > > I'm new to the group. I'm very glad I found you - there's not > a > > > lot of > > > > info. on infantile scoliosis out there. My son, Noah, has > been > > > > diagnosed with Infantile Scoliosis. He is 21 months old. We > were > > > > referred by his pediatrican to Dr. Lonstein at TC Spine > Center > > > in > > > > Mpls. I'm told he is a good doctor. We've had one appt. so > far. > > > > Noah's curve is 30 degrees and his RVAD is 20. The doctor > says > > > Noah > > > > is " right on the fence " as far as determining whether or not > his > > > curve > > > > is likely to progress. We are to go back in 3 months to have > a > > > new > > > > set of x-rays. If he is progressing - I will definately want > to > > > > discuss casting as an option. A lot of what I'm reading has > > > indicated > > > > that Noah's numbers are not good, so I'm trying to prepare > > > myself for > > > > the worst without panicking. Any thoughts or advice is > > > appreciated. > > > > Thanks! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Aekta, I sent an email about this all ready. I might have jumped the gun a little too fast. I called someone down at the Shriners Hospital in Chicago who is a member of the Alumni and I told her about the AMIL Frame and how it would benefit small children. She said it sounded like it would be good but because it is medical equipment, they (us) can not just go and buy it, she said the approval has to come from the Chief of Staff and the Main Headquarters in Tampa FL. I told her about the ETTP Conference in June that’s being held there, and that Ms Mehta would be there. I would really stress to Dr. Sternum that if he feels there’s a need for the Amil frame that he should talk to the Chief of Staff to get one. As said there will be 1 there at the conference and every medical personal will get to see it. The member I talked to did bring up the point that here is a group of people who are not in the medical profession telling a doctor that we are going to buy a new piece of equipment for you and we expect you to use it if you want to or not. This way if the approval came from the Chief of Staff, we would know it will be used. , after I emailed you I got to thinking that maybe you could invite some of the Alumni Association so they could see what is being done and to show them what the Alumni maybe paying for. I would love to come to this but don’t know if I could get my boyfriend to drive to Chicago, he has a heart attack here driving around Madison. Hate to see what he would do in Chicago. Lol Betty -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 269.4.0/762 - Release Date: 4/15/2007 4:22 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 I wanted to interject here although I know this is a topic between you and Aekta right now..so sorry for hijacking your conversation. We had the wonderful opportunity of having Dr. treat Lexi while she went through her two casts....Miss Mehta even placed the second one at the ETTP in Erie. I would trust Dr. if he says is doing good now and to stay with where y'all are. Even when we had to make the decision to brace in January of last year, I called Dr. Sander's and spoke to him personally. I was at the point where we would put off her hand surgery if he felt we needed to continue casting. Of course, we did the brace and the hand surgery was postponed anyway. However, when the hand operation was finished and we were still getting results in the brace, I again consulted with about whether to return to casting. He told me if we were getting results in the brace then to stay with it. I would not think he would feed you a " line of crap " if he didn't feel was getting good treatment. Whether he wants to treat another child or not is besides the point. Being an ethical man, which I feel he is, he wouldn't turn down a child in need if he needed another way of treatment. I may be treading on a slippery slope here but just because your Doctor isn't Mehta trained does not mean he cannot still productively cast and get results. I honestly feel by just my experience with that he would not lead you down a road if he didn't feel it was ok. I would trust his judgement and continue on with where you are. I think he would have told you guys if needed another cast done by him or another on of his colleagues practicing it. Tracey New Member > > > > > > Hello, > > > I'm new to the group. I'm very glad I found you - there's not a > > lot of > > > info. on infantile scoliosis out there. My son, Noah, has been > > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > > in > > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > > Noah > > > is " right on the fence " as far as determining whether or not his > > curve > > > is likely to progress. We are to go back in 3 months to have a > > new > > > set of x-rays. If he is progressing - I will definately want to > > > discuss casting as an option. A lot of what I'm reading has > > indicated > > > that Noah's numbers are not good, so I'm trying to prepare > > myself for > > > the worst without panicking. Any thoughts or advice is > > appreciated. > > > Thanks! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Hi Tasha, No harm done. Actually I think this a great connversation to have with all of your experiences. Your points are very valid and yes you have every right to vent. We are here to suport each other in our children's time of need. Refresh my memory please: Did Dr. see in person or only the x-rays? Did Dr. see 's x-rays in the series of casts? If yes, then Dr. saw a postive aspect: correction! is achieving such and that is the ultimate goal. Off topic....ballons are big hit. I can't even take Max to a store without him screaming for the ballon. Grocery store trips are fun these days! Sorry to here about 's birthday fall. Max fell into the wood chips yesterday. His cheek all scratched. We're so happy the cold winter weather is going away. We love to be outside. Aekta > > > > > > > > > > We have been very happy with Dr. Thometz, although I know he > > > would > > > > not cast another member of this sites child.... > > > > > > > > > > ***I am curious as to why Dr. Thometz will not cast a child > > in > > > > need, from this group? > > > > > > > > > > HRH > > > > > New Member > > > > > > > > > > Hello, > > > > > I'm new to the group. I'm very glad I found you - there's not > > a > > > > lot of > > > > > info. on infantile scoliosis out there. My son, Noah, has > > been > > > > > diagnosed with Infantile Scoliosis. He is 21 months old. We > > were > > > > > referred by his pediatrican to Dr. Lonstein at TC Spine > > Center > > > > in > > > > > Mpls. I'm told he is a good doctor. We've had one appt. so > > far. > > > > > Noah's curve is 30 degrees and his RVAD is 20. The doctor > > says > > > > Noah > > > > > is " right on the fence " as far as determining whether or not > > his > > > > curve > > > > > is likely to progress. We are to go back in 3 months to have > > a > > > > new > > > > > set of x-rays. If he is progressing - I will definately want > > to > > > > > discuss casting as an option. A lot of what I'm reading has > > > > indicated > > > > > that Noah's numbers are not good, so I'm trying to prepare > > > > myself for > > > > > the worst without panicking. Any thoughts or advice is > > > > appreciated. > > > > > Thanks! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Just wanted to say that I agree with . I think if he sees that you are getting good correction with the method that you are using now, that he wouldn't have you change what you are doing. The key is that you are getting correction and I am sure that is what he based his recommendation on. Noelle (12-2-01) Ian (8-15-04) New Member > > > > > > Hello, > > > I'm new to the group. I'm very glad I found you - there's not a > > lot of > > > info. on infantile scoliosis out there. My son, Noah, has been > > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > > in > > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > > Noah > > > is " right on the fence " as far as determining whether or not his > > curve > > > is likely to progress. We are to go back in 3 months to have a > > new > > > set of x-rays. If he is progressing - I will definately want to > > > discuss casting as an option. A lot of what I'm reading has > > indicated > > > that Noah's numbers are not good, so I'm trying to prepare > > myself for > > > the worst without panicking. Any thoughts or advice is > > appreciated. > > > Thanks! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Hi Betty, If you are talking about the chief of staff at Chicago, Dr. Sturm is the chief of staff at Shriners Chicago. Also, the location of Shriner's Chicago is not downtown. Actually it is fairly close to O'Hare airport. I hate driving in Madison myself. The location of Shriner's is more north then the heart of the city. It's the outskirts of the suburbs. Present this to your boyfriend, perhaps he'll change his mind. Thanks for the info, Aekta > > Aekta, > > I sent an email about this all ready. > > I might have jumped the gun a little too fast. I called someone down at the > Shriners Hospital in Chicago who is a member of the Alumni and I told her > about the AMIL Frame and how it would benefit small children. She said it > sounded like it would be good but because it is medical equipment, they (us) > can not just go and buy it, she said the approval has to come from the Chief > of Staff and the Main Headquarters in Tampa FL. I told her about the ETTP > Conference in June that's being held there, and that Ms Mehta would be > there. I would really stress to Dr. Sternum that if he feels there's a need > for the Amil frame that he should talk to the Chief of Staff to get one. As > said there will be 1 there at the conference and every medical > personal will get to see it. The member I talked to did bring up the point > that here is a group of people who are not in the medical profession telling > a doctor that we are going to buy a new piece of equipment for you and we > expect you to use it if you want to or not. This way if the approval came > from the Chief of Staff, we would know it will be used. > > , after I emailed you I got to thinking that maybe you could invite > some of the Alumni Association so they could see what is being done and to > show them what the Alumni maybe paying for. I would love to come to this > but don't know if I could get my boyfriend to drive to Chicago, he has a > heart attack here driving around Madison. Hate to see what he would do in > Chicago. Lol > > Betty > > > -- > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.5.446 / Virus Database: 269.4.0/762 - Release Date: 4/15/2007 > 4:22 PM > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Thanks Tracey for all your comments. I actually was being sarcastic about Dr. feeding us s line of crap. I truly don't feel that way. Although we have not met him face to face, just from knowing about him through all the parents in the group, we felt like we could trust his judgment. In regards to the cutouts that ish Rite does or doesn't do-they do a front cutout. Of course it is nothing like what Shriner's does. And I have talked to 's doctor about the shape and the purpose of the cutouts. The cast is in now is the most different. It is the closest to a Mehta style cast so far. He still has a ways to go, but I think he is listening to me. I have gone down the road of trying to get his doctor and/or ish Rite to change and they will not. Like I said I think he is listening because his cast seem to be getting better. That is just from what I see. Again thanks for your input. Tasha Tracey wrote: I wanted to interject here although I know this is a topic between you and Aekta right now..so sorry for hijacking your conversation. We had the wonderful opportunity of having Dr. treat Lexi while she went through her two casts....Miss Mehta even placed the second one at the ETTP in Erie. I would trust Dr. if he says is doing good now and to stay with where y'all are. Even when we had to make the decision to brace in January of last year, I called Dr. Sander's and spoke to him personally. I was at the point where we would put off her hand surgery if he felt we needed to continue casting. Of course, we did the brace and the hand surgery was postponed anyway. However, when the hand operation was finished and we were still getting results in the brace, I again consulted with about whether to return to casting. He told me if we were getting results in the brace then to stay with it. I would not think he would feed you a " line of crap " if he didn't feel was getting good treatment. Whether he wants to treat another child or not is besides the point. Being an ethical man, which I feel he is, he wouldn't turn down a child in need if he needed another way of treatment. I may be treading on a slippery slope here but just because your Doctor isn't Mehta trained does not mean he cannot still productively cast and get results. I honestly feel by just my experience with that he would not lead you down a road if he didn't feel it was ok. I would trust his judgement and continue on with where you are. I think he would have told you guys if needed another cast done by him or another on of his colleagues practicing it. Tracey New Member > > > > > > Hello, > > > I'm new to the group. I'm very glad I found you - there's not a > > lot of > > > info. on infantile scoliosis out there. My son, Noah, has been > > > diagnosed with Infantile Scoliosis. He is 21 months old. We were > > > referred by his pediatrican to Dr. Lonstein at TC Spine Center > > in > > > Mpls. I'm told he is a good doctor. We've had one appt. so far. > > > Noah's curve is 30 degrees and his RVAD is 20. The doctor says > > Noah > > > is " right on the fence " as far as determining whether or not his > > curve > > > is likely to progress. We are to go back in 3 months to have a > > new > > > set of x-rays. If he is progressing - I will definately want to > > > discuss casting as an option. A lot of what I'm reading has > > indicated > > > that Noah's numbers are not good, so I'm trying to prepare > > myself for > > > the worst without panicking. Any thoughts or advice is > > appreciated. > > > Thanks! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Isn’t the hospital at 2211 N. Oak Park Ave. still? I know that was the address when I was going there as a kid. That does help that Dr. Sturm is the Chief of Staff, now we just need to inform him that if he ok’s it, there will be fundraising for it. My fear will be getting lost in Chicago, it’s been so long since I’ve been there that I can’t remember the turns we made to get there. Betty -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 269.4.0/762 - Release Date: 4/15/2007 4:22 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Hi Aekta, Dr. did not see in person. And yes he saw x-rays from prior to 1st cast all the way to most recent cast change. Outside-I have a love hate relationship with the outdoors. The boys LOVE being outdoors and cry to go. I don't mind being outside, but I hate trying to get them in. And I have had really bad allergies so far this year. My husband's company just started offering play systems and our backyard will be a display for customers to come get a hands-on look at the product. The boys will freak out when they see it and I will spend LOTS of time outside. Anything to make them HAPPY! Right? I hope Max is OK-the many battle wounds of being a little boy. Take care, Tasha babymaxpd wrote: Hi Tasha, No harm done. Actually I think this a great connversation to have with all of your experiences. Your points are very valid and yes you have every right to vent. We are here to suport each other in our children's time of need. Refresh my memory please: Did Dr. see in person or only the x-rays? Did Dr. see 's x-rays in the series of casts? If yes, then Dr. saw a postive aspect: correction! is achieving such and that is the ultimate goal. Off topic....ballons are big hit. I can't even take Max to a store without him screaming for the ballon. Grocery store trips are fun these days! Sorry to here about 's birthday fall. Max fell into the wood chips yesterday. His cheek all scratched. We're so happy the cold winter weather is going away. We love to be outside. Aekta > > > > > > > > > > We have been very happy with Dr. Thometz, although I know he > > > would > > > > not cast another member of this sites child.... > > > > > > > > > > ***I am curious as to why Dr. Thometz will not cast a child > > in > > > > need, from this group? > > > > > > > > > > HRH > > > > > New Member > > > > > > > > > > Hello, > > > > > I'm new to the group. I'm very glad I found you - there's not > > a > > > > lot of > > > > > info. on infantile scoliosis out there. My son, Noah, has > > been > > > > > diagnosed with Infantile Scoliosis. He is 21 months old. We > > were > > > > > referred by his pediatrican to Dr. Lonstein at TC Spine > > Center > > > > in > > > > > Mpls. I'm told he is a good doctor. We've had one appt. so > > far. > > > > > Noah's curve is 30 degrees and his RVAD is 20. The doctor > > says > > > > Noah > > > > > is " right on the fence " as far as determining whether or not > > his > > > > curve > > > > > is likely to progress. We are to go back in 3 months to have > > a > > > > new > > > > > set of x-rays. If he is progressing - I will definately want > > to > > > > > discuss casting as an option. A lot of what I'm reading has > > > > indicated > > > > > that Noah's numbers are not good, so I'm trying to prepare > > > > myself for > > > > > the worst without panicking. Any thoughts or advice is > > > > appreciated. > > > > > Thanks! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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