Guest guest Posted May 20, 2010 Report Share Posted May 20, 2010 Evening everyone, So I'm looking to see if anyone has feedback on the hospitals in Boston. My 3 yr old Noah was diagnosed by his pedi just before he was 1. We were sent to MGH Boston where we have been going for treatment and recently went for a 2nd opinion at Children's Hospital Boston. We got some great info at Children's (i.e. a brace doesn't correct and it is something he would have to wear until casting or at least he stopped growing) which we hadn't got prior to that. Pretty important and had I known that earlier, may have done casting a long time ago instead or planning for this fall. Especially considering MGH won't do an in brace x-ray despite my asking and since they also kept him in his " shield " too long despite my asking if it was really fitting properly, causing his curves to get worse. A friend recommended Tufts Floating Children's Hospital - not that they had any experience with children's pedi - just because they heard good reviews. So many questions and so much learning - just trying to have as much information as I can since I feel a little blindsided by the last MD visit. I only recently found this group but you all are wonderful support for each other. A wealth of info too! Thanks so much. Leigh and Noah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2010 Report Share Posted May 20, 2010 Hi, I would stick with Children's. MGH is just that, a general hospital. They are wonderful (my dad spent quite a bit of time there due to his MS) but they are not specialized in pediatrics - as you found out. The Ortho dept at Children's is specialized in dealing with pediatric cases. They are pretty much on top of the latest treatments, although I am not sure if they have gotten on board with Mehta's casting. I am a transplanted Massachusetts native, who lives in Ohio, and when my dd was dx'd with congenital scoliosis and we started talking surgeries I took her to Boston for a 2nd opinion. I don't know enough about Tufts - other than their reputation is good. Keep us posted! Gail Gail "The Earth is the insane asylum for the rest of universe" “Normal is just a setting on the washing machine.†-BumperSnickerz. ********************************************************************Mom to , 11/28/98 - ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05; Spitz Nevus removal: 11/26/07 & 2/11/08; VEPTR Expansions: 11/05, 04/20/06, 6/12/08 and 8/14/09 and EARLY SUMMER 2010; From: leigh_d1971 <leigh_d1971@...>Subject: Boston Hospitalsinfantile scoliosis treatment Date: Wednesday, May 19, 2010, 6:12 PM Evening everyone,So I'm looking to see if anyone has feedback on the hospitals in Boston. My 3 yr old Noah was diagnosed by his pedi just before he was 1. We were sent to MGH Boston where we have been going for treatment and recently went for a 2nd opinion at Children's Hospital Boston. We got some great info at Children's (i.e. a brace doesn't correct and it is something he would have to wear until casting or at least he stopped growing) which we hadn't got prior to that. Pretty important and had I known that earlier, may have done casting a long time ago instead or planning for this fall. Especially considering MGH won't do an in brace x-ray despite my asking and since they also kept him in his "shield" too long despite my asking if it was really fitting properly, causing his curves to get worse. A friend recommended Tufts Floating Children's Hospital - not that they had any experience with children's pedi - just because they heard good reviews.So many questions and so much learning - just trying to have as much information as I can since I feel a little blindsided by the last MD visit.I only recently found this group but you all are wonderful support for each other. A wealth of info too!Thanks so much. Leigh and Noah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2010 Report Share Posted May 20, 2010 Children's does not do Mehta casting but Dr E. Had of ped. Ortho does refer to Rochester for casting. That is what happened with us. Jenn Mommy to Cole, 2.5 years, 1st brace from rochester, 2 degrees down from 47 after 10 months in 5 casts > > Evening everyone, > > So I'm looking to see if anyone has feedback on the hospitals in Boston. My 3 yr old Noah was diagnosed by his pedi just before he was 1. We were sent to MGH Boston where we have been going for treatment and recently went for a 2nd opinion at Children's Hospital Boston. We got some great info at Children's (i.e. a brace doesn't correct and it is something he would have to wear until casting or at least he stopped growing) which we hadn't got prior to that. Pretty important and had I known that earlier, may have done casting a long time ago instead or planning for this fall. Especially considering MGH won't do an in brace x-ray despite my asking and since they also kept him in his " shield " too long despite my asking if it was really fitting properly, causing his curves to get worse. A friend recommended Tufts Floating Children's Hospital - not that they had any experience with children's pedi - just because they heard good reviews. > > So many questions and so much learning - just trying to have as much information as I can since I feel a little blindsided by the last MD visit. > > I only recently found this group but you all are wonderful support for each other. A wealth of info too! > > Thanks so much. > Leigh and Noah > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2010 Report Share Posted May 22, 2010 Hi, Dr. Emans at Boston Children's is at the top of his field, is well respected--and has the humility to say that research shows that some of the ideas that were popular 10 years ago are not born out by current information. I like that he sent us to Shriners for casting even though it is not as "sexy" as surgery--and that he has a clear idea of the drawbacks as well as the advantages of different methods. Our daughter is 9, and we wish that she had been able to get early casting, as the research is showing it can be quite effective; we still would recommend a cast, however, as we have found she tolerates it better than a brace. We get our primary treatment at Shriners in Erie, PA--an absolutely great place, but feel we are in good hands going to Emans every six months for his opinion, as well. Best of luck to you and your little one.Take care,ChrisFrom: leigh_d1971 <leigh_d1971@...>infantile scoliosis treatment Sent: Wed, May 19, 2010 6:12:43 PMSubject: Boston Hospitals Evening everyone, So I'm looking to see if anyone has feedback on the hospitals in Boston. My 3 yr old Noah was diagnosed by his pedi just before he was 1. We were sent to MGH Boston where we have been going for treatment and recently went for a 2nd opinion at Children's Hospital Boston. We got some great info at Children's (i.e. a brace doesn't correct and it is something he would have to wear until casting or at least he stopped growing) which we hadn't got prior to that. Pretty important and had I known that earlier, may have done casting a long time ago instead or planning for this fall. Especially considering MGH won't do an in brace x-ray despite my asking and since they also kept him in his "shield" too long despite my asking if it was really fitting properly, causing his curves to get worse. A friend recommended Tufts Floating Children's Hospital - not that they had any experience with children's pedi - just because they heard good reviews. So many questions and so much learning - just trying to have as much information as I can since I feel a little blindsided by the last MD visit. I only recently found this group but you all are wonderful support for each other. A wealth of info too! Thanks so much. Leigh and Noah Quote Link to comment Share on other sites More sharing options...
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