Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 " Wait and See " is what used to be called the " standard of care " for kids with scoliosis. I remember Dr. told me to my face that Moriah received the standard of care. Of course he changed that in the surgical world by inventing the VEPTRs with Dr. Melvin . WE (ISOP and casting parents) need to change the " standard of care " for kids not needing surgery by promoting and demanding Early Treatment, not waiting and watching. Shellie dmcmow wrote: Hi We also were told to " wait and see " those are the words they still echo in my head. I wish I never heard them, if only I could take back 2 years I would deffinatly do things different. If you took a poll of the people who were told " wait and see " I think most would say yes. Then ask the question of how many curves resolved on their own. Does anybody know the percentage of curves that resolve on their own. Our first Dr. told us 90% resolve on their own. So if thats the case if you have seen 10 kids with Scoliosis 9 would be resolving. I guess in this forum we are the one in ten as per the Dr.s advice. At this point I would take the proactive approach get treatment. Then " wait and see " . Darrell We took > Holly (7 months, 36* curve to the right recently > > identified on xray) to a local orthopedist today to get an > > assessment of her condition. Even though Dr. Khoury looked at her > > xrays and said she has a progressive form and needed casting, we > > wanted to have someone look at her here. 1) to make sure that she > > is generally healthy and 2) to find a local doc who could support > > her care. > > > > He said it does not look like she has much rotation (although he > > agreed the xray was fuzzy) and that we should wait and see what > > happens. He said that 85% of cases of IS get better without > > treatment. He said to come back in 3-4 months to see how she is > > doing then. He also mentioned a whole bunch of other things about > > braces and surgeries, but told us not to get alarmed by what we > > might have read about IS. He said we were the 3rd case of IS he > had > > seen just today and only about 10% of his patients ever need > > treatment. > > > > Then I pressed him about predictors. I mentioned some predictors > > that i felt were not in her favor (gender, direction of curve, > > degree of curve). I also asked him about the RVAD score. It > seemed > > as though he has heard of it, but couldn't or didn't measure it. > > He just didn't want to talk about how to refine general > predictions > > based on important predictor variables. > > > > When i asked about casting, he said that casting was a old > procedure > > that has " come back " . But he implied that he didn't believe it > was > > warranted. Later on he mentioned a surgical procedure involving > the > > ribs that he said was invented by the Chief at Shriners Hospital > > (who he used to work with). Ironically, he was referring to Dr. > > Sturm. When i mentioned that Dr. Sturm did early intervention > with > > casting, he flat out said he disagreed. > > > > OK, so i guess this is not our doc. We still plan to go to > > Birmingham to for consult and casting with Dr. Khoury. But this > > meeting did add some level of uncertainty, as this doc was fairly > > certain that she would get better without treatment. > > > > He also said she doesn't need an MRI. > > > > I realize this is a select group and maybe all of the " wait and > see " > > kiddos who had positive outcomes wouldn't have parents talking > about > > casting right now. But how do you decide what to do? > > > > Waiting and seeing seems scary. Putting a child through > unnecessary > > medical procedures is scary. > > > > sorry for the long post. > > > > > > (mom to Holly 7 months) > > > > > > > > > > > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 I forgot about the resolving question. I don't think they have concrete numbers on that. Most can't even say how prevelant Infantile Scoliosis is, because most don't see it, or wait and watch until Juvenile to intervene. Shellie Shellie Grant wrote: " Wait and See " is what used to be called the " standard of care " for kids with scoliosis. I remember Dr. told me to my face that Moriah received the standard of care. Of course he changed that in the surgical world by inventing the VEPTRs with Dr. Melvin . WE (ISOP and casting parents) need to change the " standard of care " for kids not needing surgery by promoting and demanding Early Treatment, not waiting and watching. Shellie dmcmow wrote: Hi We also were told to " wait and see " those are the words they still echo in my head. I wish I never heard them, if only I could take back 2 years I would deffinatly do things different. If you took a poll of the people who were told " wait and see " I think most would say yes. Then ask the question of how many curves resolved on their own. Does anybody know the percentage of curves that resolve on their own. Our first Dr. told us 90% resolve on their own. So if thats the case if you have seen 10 kids with Scoliosis 9 would be resolving. I guess in this forum we are the one in ten as per the Dr.s advice. At this point I would take the proactive approach get treatment. Then " wait and see " . Darrell We took > Holly (7 months, 36* curve to the right recently > > identified on xray) to a local orthopedist today to get an > > assessment of her condition. Even though Dr. Khoury looked at her > > xrays and said she has a progressive form and needed casting, we > > wanted to have someone look at her here. 1) to make sure that she > > is generally healthy and 2) to find a local doc who could support > > her care. > > > > He said it does not look like she has much rotation (although he > > agreed the xray was fuzzy) and that we should wait and see what > > happens. He said that 85% of cases of IS get better without > > treatment. He said to come back in 3-4 months to see how she is > > doing then. He also mentioned a whole bunch of other things about > > braces and surgeries, but told us not to get alarmed by what we > > might have read about IS. He said we were the 3rd case of IS he > had > > seen just today and only about 10% of his patients ever need > > treatment. > > > > Then I pressed him about predictors. I mentioned some predictors > > that i felt were not in her favor (gender, direction of curve, > > degree of curve). I also asked him about the RVAD score. It > seemed > > as though he has heard of it, but couldn't or didn't measure it. > > He just didn't want to talk about how to refine general > predictions > > based on important predictor variables. > > > > When i asked about casting, he said that casting was a old > procedure > > that has " come back " . But he implied that he didn't believe it > was > > warranted. Later on he mentioned a surgical procedure involving > the > > ribs that he said was invented by the Chief at Shriners Hospital > > (who he used to work with). Ironically, he was referring to Dr. > > Sturm. When i mentioned that Dr. Sturm did early intervention > with > > casting, he flat out said he disagreed. > > > > OK, so i guess this is not our doc. We still plan to go to > > Birmingham to for consult and casting with Dr. Khoury. But this > > meeting did add some level of uncertainty, as this doc was fairly > > certain that she would get better without treatment. > > > > He also said she doesn't need an MRI. > > > > I realize this is a select group and maybe all of the " wait and > see " > > kiddos who had positive outcomes wouldn't have parents talking > about > > casting right now. But how do you decide what to do? > > > > Waiting and seeing seems scary. Putting a child through > unnecessary > > medical procedures is scary. > > > > sorry for the long post. > > > > > > (mom to Holly 7 months) > > > > > > > > > > > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
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