Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 The pioneer is no longer available by email. I'll see what I can find out Suzy. > Hi Suzy, Thanks for the kind words. I know how frustrating it is with > these > doctors. I might have worded my story wrong, but Santi wore the casts > until he > was 5, then due to his hypotonia in his legs, the doctor wanted to try > night > bracing to see how it would work, well, it has been great. We have not > lowered > the curve, but it has progressed very little. I know that every child is > different and casting has been successful with older children also, but > most > children eventually have to get into the braces. We always say we have a > window > of opportunity for these little ones to wear the P.O.P casts, so we have > to take > advantage of it while they are little. How old is Abi? What kind of > correction > have you achieved? You might want to e-mail Dr. V. your story, although > he is > so busy now with the VEPTR in Japan, I would hope he would be able to > answer. I > will however mention it to him. You might also want to take advantage of > having > Dr. Min Mehta right there in England and e-mail her asking what she would > recommend. A couple of years ago, I e-mailed her and she quickly wrote me > a long > letter back, she was so caring and understanding, and told me about Dr V. > She > could possibly recommend someone there close by. Good luck Suzy and I am > curious > about what you have achieved with casting and how old little Abi is. Let > me know > what you find out. If you want me to privately e-mail Dr V. information, I > would > be more then happy to. > Sincerely, > Kelli and Santiago > > > > > ________________________________ > De: suzyinoxford <sue@...> > Para: infantile scoliosis treatment > Enviado: jue,2 diciembre, 2010 00:56 > Asunto: Re: Santi back from Dr V in Barcelona > >  > > Hi Kelli > > Fantasic news that Santi is staying well under the 50 figure. I am > interested > that Santi has been cast for 6 years as we are being threatened with Abi > being > braced now. Abi has a double curve that each rotate in opposing directions > and > we are keen for her to stay in cast and shall be fighting for it. when you > next > see your doctor can you ask please if he knows of good surgeons in the UK > please. The struggle with the sugeons here does make it all a battle but > we are > determined to get the best for Abi. > > Sue and Abi (on around cast 8) oxford, uk > > >> >> >> >> >> >> >> ________________________________ >>  >>  Hi Everyone, just wanted to write a quick update on Santi. Went to >> see Dr V. >>in >> >> Barcelona yesterday and all great news. His back is maintaining at a >> thoratic >> lumbar on T-12 at 38 degrees. If you remember he was at 50 degrees when >> he was >>2 >> >> years old, now after a huge growth spurt, and 3 castings we still >> have kept >>him >> >> under the 50 mark now for over 6 years. I couldn´t ask for more. He >> has little >> >> rotation and a lot of flexability, which is what the doc likes to see. >> The doc > >> mentioned several interesting things I thought I would let everyone >> know. He >>has >> >> been traveling to Japon, China, India, teaching P.O.P casting, Halo, and >> VEPTR, >> >> he is also one of the few in Spain who is doing the VEPTR and having >> sucess, >> which is also important to mention. He told me that Japon had stopped >> the veptr >> >> a year and a half ago due to problems they were having with the patients >> treated. Thus, they just opened the doors up again to it and have >> allowed Dr V > >> and another doctor to come in and train their fellow doctors the >> technique. He > >> has been their 3 times, and so far all his veptrs have had success. He >>mentioned >> >> that he will only do the veptr when there is major chest and back >> deformaties, > >> he right off told me Santi would not be a veptr patient, if anything >> growing >> rods much later down the road hopefully. He also mentioned he just >> returned >>from >> >> a big convention in Toronto called the I.C.E.O.S. I believe it deals >> with Early >> >> onset Scoliosis, the I. and C. not sure what it stands for. But, he said >> the >> convention was great, very informative and lots of new things on the >> horizon. >>He >> >> is so optimistic and energetic with these kids, I just love this Doc. He >> never > >> stops traveling to help teach these 3rd world countries how it should be >> done, > >> he learns from the best in the USA, Germany, wherever he has to go, he >> will go. >> >> If anyone has any info on the Toronto convention, I sure would love to >> hear all >> >> about it. Anyway, enough of my story, just wanted to spread the good >> news and >> let you know how Santi is doing after all our hard work with casting and >> to see >> >> that we are still working with lower numbers then when we started 6 >> years ago. >>I >> >> wouldn´t be here today if it weren´t for . I remember my >> first e-mail >>to >> >> this group, a mom lost, scared and with no direction. , you >> taught me, >> calmed me, and helped me take control. I can never thank you enough for >> all >>that >> >> you have done for myself and so many others here on this group. I am a >>stronger, >> >> better person thanks to you. Wishing everyone a journey like mine has >> been so >> far, I continue to pray for all these beautiful kids out there, and the >> moms >>and >> >> dads with all the struggles and decisions that must be made. >> >> With sincere regards to everyone, >> Kelli and Santiago >>  >> >>  >>  >>  >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.