Suzy and Abi

[Guest guest]

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 00:56Asunto: Re: Santi back from Dr V in Barcelona

Hi KelliFantasic 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>> > > > > > ________________________________> Â > Â 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> Â > > Â > Â > Â >