Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 CONGRATS on the 4lb weight gain while in cast! I remember well the excitement I had in every lb. Liv gained...Excellent news! HRH > , > I've responded to you a few times I think & you have very great questions! > As I've said before Levi's RVAD pre casting was only 10. (We were told > by a different doc locally...mind you he was still an hr & 1/2 drive > away... that the RVAD was 25 which is why we made the trip 2 states over > to go to Shriner's SLC) When you find an experienced doctor that you feel > comfortable with you will know! For us experience, proper casting table & > techniques were of a much higher importance then the closeness of > location. EXPERIENCE being the key! SLC casted Levi even with the low > RVAD because his experience told him that my sons scoli was progressive in > nature due to the 15-20 rotation. He told us waiting was a choice, but > that he truly believed we would be playing catch up later & most likely > miss our window for the best outcome. I totally understand the feeling to > push for casting....we were there too! I am so happy with where we are > now & have NEVER wondered if we made the wrong choice! In fact my sons > insane increase in eating & his 4 lbs weight gain (in 9 wks he was in his > 1st cast) is evidence enough for me that there was more going on inside > his little body due to the scoli then the docs realized. > > My best advice in helping the admissions process along is to make sure you > have a good copy of ALL medical records for Lucy. Send everything you > have ( X rays, Mri, doc notes) as quick as you can. (we over nighted & > faxed) Our doc evaluated Levi by what we sent & Levi was casted on our > very 1st trip out. Be politely pushy & keep calling & checking on her > status. Traveling isn't really that bad. We fly out on a wed, cast thurs > morning, & fly home fri afternoon. Its expensive to travel, but we > manage. > Best of luck to you and Lucy, > Amber > > > > > >> , >> >> My daughter was 49 deg with a RVAD of 15 before starting casting. She >> had >> a >> very noticeable rib hump which was not visible after cast #2 was >> removed. >> She's in cast #8 now. So I think there's a lot more than that number >> taken >> into account in the decision making process. >> >> >> >> Glad Lucy's MRI was normal! >> >> >> >> I really think the biggest hurdle with getting into Shriners is how the >> schedule looks. My daughter was diagnosed in April and casted in June >> 2010. >> The longest wait was for her MRI due to an upper respiratory infection. >> >> >> >> I can assure you that my daughter has been seen there by two different >> specialists (she has another unrelated and uncomplicating condition), >> and >> I've been VERY >> happy with her care. Regarding casting, the younger patients are >> casted >> first, so you definite want to stay over the night before unless you >> want >> to >> leave the house in wee hours of the morning. They require an overnight >> stay >> the first night with the first cast so they can monitor breathing. Make >> sure two adults come with her for the casting. (That was our biggest >> mistake). It has become so much easier over time. We've all become >> pros. >> Once you get an appt scheduled for casting, the group can help you with >> tons >> of helpful tips. >> >> >> >> Sherry >> >> >> >> Re: My daughter Lucy >> >> >> >> >> >> Thanks so much everyone for the great info. >> I will ask our doc on Wednesday what Lucy's RVAD is. If its less than >> 20, >> does that mean she's not a candidate for casting? I really want to get >> her >> casted regardless, unless someone can guarantee me her curve will >> resolve >> on >> its own. >> My current doc is with Stanley in NYC, he's actually in the same >> practice as Dr. V on the list of doctors on this site. Unfortunately Dr. >> V >> does not take my insurance so I can't switch to him. I would of course >> prefer to get care in NYC rather than drive 2.5 hours to Philly (or 8 >> hours >> to Rochester) but we will go wherever Lucy can get the best care. I am >> trying to apply to Shriners Philly I just need to get copies of our >> x-rays. >> Lucy has already had an MRI it was normal. How long does the application >> process at Shriners take? Is there anything I can do to speed it along? >> I >> really hope to get in by the end of the month. >> Kristi thanks so much for the detailed info on casting. This really >> helps >> me >> understand what to expect when we get started with casting (hopefully >> soon!!) >> >> >>> > >>> > That is the real crappy part of the diagnosis at first I could not >> believe >>> this BIG experience ortho surgeon at children's Boston would steer me >> wrong >>> and tell me to brace what about the hippocratic oath right ... If you >>> have >>> progressive scoli curve with RVAD over 20. Get casted you really have >>> to >>> best option available do it. I would see dr k at the hospital in >>> Illinois >> we >>> had 3 different people cast our son and he had the BEST technique call >>> me >>> any time. >>> > If questions Adan is 8 now started at 9 months >>> > hrph@ >>> > >>> > >>> > Best, >>> > >>> > Sent from my iPhone >>> > >>> >> >> >> >> > > > Quote Link to comment Share on other sites More sharing options...
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