Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 Uh yah, that's a serious issue he DID NOT know what the rib hump was.... You are right, in my opinion the risks outweigh the benefits by an enormous landslide! There are kids on here who have experienced skin issues. My son who will be in cast for 1 year Feb. 6th hasn't. He gets itchy when it's hot- we live in south Louisiana and have to keep him in doors which stinks but in the grand skeam of things who cares! It's a small price to pay fir a straighter back. He has had small friction sores under the cast but nooo big deal. You learn to cope and deal. I compare it to falling and getting a ouchy:) You learn to treat it the best you can. I think the chances of your child correcting from 30 degrees is not likely but don't know for sure. To be deemed progressive you would have to track the progress I think. My son started at 11 degrees. You don't have that low if a base line. At 11 degrees he coulda self corrected but dis not. My doc was a jerk and hands down said casting wasn't a good treatment. I was an idiot and i unfortunately listened to him for tooo long. Bad mom move...... We now have another doc and have been in cast almost a year. I hope to be in cast for at least another year. My son is almost 5 and though we recieved correction it will take longer to get where we need to be or at least as far as we can. We started w an s curve 50 on top 45 on bottom and currently are in the low 20's. Yah know you might get lucky and just need 3 or 4 casts... You are on the right track. Lucy is lucky she has you! Give her the chance to grow straight! Have you had an MRI yet? Most docs want that done prior to the 1st cast. Best wishes! Tame Sent from my iPhone On Jan 8, 2012, at 1:11 PM, " Quartuccio " <kellyq5349@...> wrote: I cannot thank you all enough for your quick responses and all your great advice. This group is amazing! To answer Amber's question I'm pretty sure they do not anesthetize to do a mold for bracing. Lucy was measured for a brace, they didn't have to do a mold because she is such a standard size but they were planning on it with no anesthesia required. My doc has said he wants to avoid anesthesia for Lucy plus the skin issues associated with casting. Has this been a problem for any of you? To me the risks are completely worth it for the reward of a straight back. Another question I have for the group, how do you know if your child's scoliosis is progressive? Is it over a certain degree makes it progressive, or do you just have to see if it progresses over time? I'm wondering if my doc thinks Lucy's back will correct itself and that's why he doesn't want to cast. I'm going to keep my appt on Wed but I am really doubting if he is the right doc for us, even if he does agree to casting. One thing that bothers me, at Lucy's first appt he mentioned the lump on one side of her back and said he wasn't sure what that was, that is seemed like a hard lump of muscle. Then we she got measured for her brace the brace guy (not even a doctor) said that's her ribs sticking out because of the scoli. Then I watch the Mehta video and it seems that this is standard in scoli, in fact they cut a hole in the back of the cast to correct the rib deformity. Does this seem like a serious problem to you all that he didn't know this? I'm going to call Shriners Philadelphia on Monday morning and try to get an appt with Dr. C. Is there typically a wait for these appts? My goal is to have Lucy casted (by an expert!) by the end of the month. Sooner if possible but I'm realistic. Do you all think I will have a problem getting in soon? Also someone mentioned going to see a doc and then getting casted the next day if the doc agrees. Is this how it works? This sounds good to me I don't want to make 2 separate trips. Sorry for all the rambling. This is literally ALL I think about lately. Thanks again everyone. Mom to Lucy 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...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 Yes it is called te rib hump and that is what I noticed on my son that resulted in finally getting his Scoli diagnosed. We thought sore enlarged muscle.... I do believe that your doc not knowing this would make me really question his experience level! Do to the fact there is a finite time window for best results I wouldn't mess around id go to the best. As far as skin issues...Levi had a rash in cast but we found out that was do to a penicilian allergy not cast but it was still hard to deal with because of wearing the cast. He had some irritation around the waist we saw when the cast was removed but nothing that cant be delt with. id take skin issues and a chance at a cure over a brace any day. A progressive diagnosis is sometimes given after seeing the cure progress but as in my sons case he was given an 80% chance at resolving but progressed. Sometimes a doc will measure the RVAD & if that's over 20 they will diagnose progressive. Since x rays aren't an exact science we were giving a RVAD of 25 by the local doc which is why we sought out an experienced casting doc. Once at SLC Levi was given better x rays and his RVAD was only 10 but because of the evident rotation he believed it to still be progressive and casted. Just find yourself an experienced doc you trust & you will be on the right track! Amber I cannot thank you all enough for your quick responses and all your gre > advice. This group is amazing! > To answer Amber's question I'm pretty sure they do not anesthetize to do a > mold for bracing. Lucy was measured for a brace, they didn't have to do a > mold because she is such a standard size but they were planning on it with > no anesthesia required. My doc has said he wants to avoid anesthesia for > Lucy plus the skin issues associated with casting. Has this been a problem > for any of you? To me the risks are completely worth it for the reward of > a straight back. > Another question I have for the group, how do you know if your child's > scoliosis is progressive? Is it over a certain degree makes it > progressive, or do you just have to see if it progresses over time? I'm > wondering if my doc thinks Lucy's back will correct itself and that's why > he doesn't want to cast. I'm going to keep my appt on Wed but I am really > doubting if he is the right doc for us, even if he does agree to casting. > One thing that bothers me, at Lucy's first appt he mentioned the lump on > one side of her back and said he wasn't sure what that was, that is seemed > like a hard lump of muscle. Then we she got measured for her brace the > brace guy (not even a doctor) said that's her ribs sticking out because of > the scoli. Then I watch the Mehta video and it seems that this is standard > in scoli, in fact they cut a hole in the back of the cast to correct the > rib deformity. Does this seem like a serious problem to you all that he > didn't know this? > I'm going to call Shriners Philadelphia on Monday morning and try to get > an appt with Dr. C. Is there typically a wait for these appts? My goal is > to have Lucy casted (by an expert!) by the end of the month. Sooner if > possible but I'm realistic. Do you all think I will have a problem getting > in soon? Also someone mentioned going to see a doc and then getting casted > the next day if the doc agrees. Is this how it works? This sounds good to > me I don't want to make 2 separate trips. > Sorry for all the rambling. This is literally ALL I think about lately. > Thanks again everyone. > > > Mom to Lucy > > > >> >> 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...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 Dr. K at Children’s in B’ham, AL. told us when we brought Sierra in back in March of 2010 that anything measuring over 20 degrees with rotation was more than likely progressive. Sierra measured at 34 degrees at 11 months old. That is why he wanted to cast that very week! We are on cast #9 and we have never had any sort of skin breakdown. There has been pressure points and redness when the cast 1st come off but by the next morning they are gone. I am a little bit of a freak about being extra careful with liquids, eating, diapering, bathing and such. Sierra always keeps a shirt on and sometimes with spaghetti O’s and stuff she will wear a plastic bib...she understands she cannot get her cast wet or dirty! Sierra did have a rib hump also..I forgot what her RVAD was..I think around 25...but as her spine has straighten her hump is gone. Dr. K said with the degree of curvature coming down of her spine the rotation will also stop. This is the scenario when we get casted....We go up to B’ham the day before casting..my husband now cuts her cast off that morning...it is about a 4 1/2 hour drive...so Sierra is cast free for a day and nite...Dr. K wants her spine to relax so we can see how much correction we have gotten. We do lots of baths and have let her swim too! We are normally the 1st scheduled for casting the next morning at 6:00 am. No food after midnight and only clear liquids up until 4:00 am. Sierra is put under, they do a OUT of cast X-ray and then Dr. K manipulates her spine and applies the cast...the video is on You tube. He then takes an X-ray of what he is holding her at IN cast. He is usually done in about 30-45 min. then he come by our room gives us the #’s. The cast Tech.’s are very important...they do all the trim work so we can live with a cast for 3 months...they usually use the one before to go by. Do NOT leave the hospital until you have checked the cast over...it could be too high under her chin, under her arms..to far down on the legs. They can trim without affecting the integrity of the cast. Also, the grey torso t-shirt that is placed under the cast is very important...I would not cast without it! Anyway Sierra comes out of recovery. I normally ask for liquid Lori tab for her. We stay as long as we feel we need to. After she gets some liquids down...she likes Sierra Mist and gator aid. We leave the hospital and drive a short distance to a relatives house or last time we stayed at The Mc house just 2 streets over. We go back and just let her rest..well we all do. By that afternoon she is back to her normal delightful self. I like to stay close to the hospital just in case there is any type of issue with the cast. We head home the next morning. It is stressful on our whole family...Sierra handles it better than anyone. I do stand at her hospital door and speak to every single person that comes in her room..a lot of the Nurses and anesthesiologists do not even know what Mehta casting is...mainly just Dr. K and his staff, but believe me when I say I believe they ALL know me pretty well by now. We have had some issues, but you just have to be the advocate for your child..if something does not look right or feel right let them know!!!! Sorry to go on and on...we have just been through this so many times I would like to help out in anyway I can! Keep us posted! Kristi Mommy to Sierra..34 degrees...9th cast now down to 9 degrees OUT of cast and –6 degrees in cast. 10th cast March 2012 or possible a brace! From: Quartuccio Sent: Sunday, January 08, 2012 1:11 PM infantile scoliosis treatment Subject: Re: My daughter Lucy I cannot thank you all enough for your quick responses and all your great advice. This group is amazing!To answer Amber's question I'm pretty sure they do not anesthetize to do a mold for bracing. Lucy was measured for a brace, they didn't have to do a mold because she is such a standard size but they were planning on it with no anesthesia required. My doc has said he wants to avoid anesthesia for Lucy plus the skin issues associated with casting. Has this been a problem for any of you? To me the risks are completely worth it for the reward of a straight back. Another question I have for the group, how do you know if your child's scoliosis is progressive? Is it over a certain degree makes it progressive, or do you just have to see if it progresses over time? I'm wondering if my doc thinks Lucy's back will correct itself and that's why he doesn't want to cast. I'm going to keep my appt on Wed but I am really doubting if he is the right doc for us, even if he does agree to casting. One thing that bothers me, at Lucy's first appt he mentioned the lump on one side of her back and said he wasn't sure what that was, that is seemed like a hard lump of muscle. Then we she got measured for her brace the brace guy (not even a doctor) said that's her ribs sticking out because of the scoli. Then I watch the Mehta video and it seems that this is standard in scoli, in fact they cut a hole in the back of the cast to correct the rib deformity. Does this seem like a serious problem to you all that he didn't know this? I'm going to call Shriners Philadelphia on Monday morning and try to get an appt with Dr. C. Is there typically a wait for these appts? My goal is to have Lucy casted (by an expert!) by the end of the month. Sooner if possible but I'm realistic. Do you all think I will have a problem getting in soon? Also someone mentioned going to see a doc and then getting casted the next day if the doc agrees. Is this how it works? This sounds good to me I don't want to make 2 separate trips. Sorry for all the rambling. This is literally ALL I think about lately. Thanks again everyone.Mom to Lucy>> 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...
Guest guest Posted January 9, 2012 Report Share Posted January 9, 2012 Hi , Please read the RVAD (rib vertebral angle degree/difference) article in the Files section of CAST for a better understanding of the simple measuring technique that will help determine if Amber's scoli is of the progressive nature, or not. If the rvad is over 20, its considered progressive. A doc who understands infantile scoli should be able to give you the rvad straight away. Please keep us posted. HRH > I cannot thank you all enough for your quick responses and all your great > advice. This group is amazing! > To answer Amber's question I'm pretty sure they do not anesthetize to do a > mold for bracing. Lucy was measured for a brace, they didn't have to do a > mold because she is such a standard size but they were planning on it with > no anesthesia required. My doc has said he wants to avoid anesthesia for > Lucy plus the skin issues associated with casting. Has this been a problem > for any of you? To me the risks are completely worth it for the reward of > a straight back. > Another question I have for the group, how do you know if your child's > scoliosis is progressive? Is it over a certain degree makes it > progressive, or do you just have to see if it progresses over time? I'm > wondering if my doc thinks Lucy's back will correct itself and that's why > he doesn't want to cast. I'm going to keep my appt on Wed but I am really > doubting if he is the right doc for us, even if he does agree to casting. > One thing that bothers me, at Lucy's first appt he mentioned the lump on > one side of her back and said he wasn't sure what that was, that is seemed > like a hard lump of muscle. Then we she got measured for her brace the > brace guy (not even a doctor) said that's her ribs sticking out because of > the scoli. Then I watch the Mehta video and it seems that this is standard > in scoli, in fact they cut a hole in the back of the cast to correct the > rib deformity. Does this seem like a serious problem to you all that he > didn't know this? > I'm going to call Shriners Philadelphia on Monday morning and try to get > an appt with Dr. C. Is there typically a wait for these appts? My goal is > to have Lucy casted (by an expert!) by the end of the month. Sooner if > possible but I'm realistic. Do you all think I will have a problem getting > in soon? Also someone mentioned going to see a doc and then getting casted > the next day if the doc agrees. Is this how it works? This sounds good to > me I don't want to make 2 separate trips. > Sorry for all the rambling. This is literally ALL I think about lately. > Thanks again everyone. > > > Mom to Lucy > > > >> >> 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...
Guest guest Posted January 9, 2012 Report Share Posted January 9, 2012 – there’s a lot of good info in Kristi’s note and in the others that were sent. I’d second the opinion that if the dr didn’t recognize the rib hump for what it is (due to spinal rotation), I’d find a more experienced doctor. My daughter was casted on Wednesday in cast #8. She has had no issues with anesthesia. We do request something for nausea. She also has had no skin issues. Sure when the cast comes off, there is a little bruising and rubbed areas. If there is a major issue, your child will let you know. Based on a few of the children having skin issues, and all parents having a dislike of anesthesia and xray radiation, I would not shy away from casting until you try it. It seems to me that most children do not have issues with casting. For those who do, you weigh the pros vs. cons, and worse case, get it cut off early if need be. With all the info getting “thrown” at you, Dr C at Philly Shriners also practices at Erie Shriners. Glad you’re going to Philly for a second opinion. They will most likely want an MRI before they cast. And scheduling depends on a lot of things. Hopefully it’ll move fast for you! Sherry Re: My daughter Lucy I cannot thank you all enough for your quick responses and all your great advice. This group is amazing! To answer Amber's question I'm pretty sure they do not anesthetize to do a mold for bracing. Lucy was measured for a brace, they didn't have to do a mold because she is such a standard size but they were planning on it with no anesthesia required. My doc has said he wants to avoid anesthesia for Lucy plus the skin issues associated with casting. Has this been a problem for any of you? To me the risks are completely worth it for the reward of a straight back. Another question I have for the group, how do you know if your child's scoliosis is progressive? Is it over a certain degree makes it progressive, or do you just have to see if it progresses over time? I'm wondering if my doc thinks Lucy's back will correct itself and that's why he doesn't want to cast. I'm going to keep my appt on Wed but I am really doubting if he is the right doc for us, even if he does agree to casting. One thing that bothers me, at Lucy's first appt he mentioned the lump on one side of her back and said he wasn't sure what that was, that is seemed like a hard lump of muscle. Then we she got measured for her brace the brace guy (not even a doctor) said that's her ribs sticking out because of the scoli. Then I watch the Mehta video and it seems that this is standard in scoli, in fact they cut a hole in the back of the cast to correct the rib deformity. Does this seem like a serious problem to you all that he didn't know this? I'm going to call Shriners Philadelphia on Monday morning and try to get an appt with Dr. C. Is there typically a wait for these appts? My goal is to have Lucy casted (by an expert!) by the end of the month. Sooner if possible but I'm realistic. Do you all think I will have a problem getting in soon? Also someone mentioned going to see a doc and then getting casted the next day if the doc agrees. Is this how it works? This sounds good to me I don't want to make 2 separate trips. Sorry for all the rambling. This is literally ALL I think about lately. Thanks again everyone. Mom to Lucy > > 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...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 , 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...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 , 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...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 It will work out! We drive 8 hrs and it's really not that bad. Think of it as an adventure:) where ever you end up I wish you luck! Tame Sent from my iPhone On Jan 9, 2012, at 9:29 PM, " Quartuccio " <kellyq5349@...> wrote: 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...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 AMEN! Sent from my iPhone On Jan 10, 2012, at 9:56 PM, " Shauna " <scolimail@...> wrote: Cast. Hands down, just cast. Find an experienced doctor and cast. Unless there is another underlying issue or other reason why casting should not be done at this time. We tried the brace route and it did not go well. My son went from 62 degrees before the brace to 85 degrees in about 8 weeks time. His RVAD went well over 100 from the poorly made brace exerting improper pressure. It was not a doctor who made his brace, but a technician who had never done so before. The doctor ordered it, the tech scratched her head and tried to fill the order. I know my son's case is a little extreme compared to a lot of the kiddoes posted on this group, I know there are many with other issues and more severe cases that read this group but don't post due as their personal choice, and certainly many others who read this group whose children run the spectrum from mild to severe who also don't post, but I would say cast. Don't worry about the problems that can arise, unless there is a reason not to cast, just cast and take it as it comes. The benefits from casting versus not casting unless there is a tethered cord or other condition that needs attention first, or a urgent and strong contraindication to casting, are enormous. My son may not even be the most ideal candidate for casting and I still press to have him cast because I have seen the benefits it brings. It is suggested that rods may be better for him in the near future, but I would be hard pressed for him to take that road any time soon. I firmly believe casting is excellent and a wonderful treatment for scoli kids because it corrects as gently as possible and works towards placing their little bodies in alignment and nothing else. Shauna Leamy mother of Kelsey, Kieran, 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...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 I agree with Tame, we drive 2 1/2 hours and I love our drives home, gives me time to digest what has happened during the day! Becky On 2012-01-10, at 10:25 PM, Tame Olson wrote: > It will work out! We drive 8 hrs and it's really not that bad. Think of it as an adventure:) where ever you end up I wish you luck! > > Tame > > Sent from my iPhone > > On Jan 9, 2012, at 9:29 PM, " Quartuccio " <kellyq5349@...> wrote: > > 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 applicatio > n 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...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 How'd it go? HRH > Thanks Amber and Sherry! > Luckily for us Philadelphia is only 2.5 hours away and we can drive there. > But even if we had to fly it would be totally worth it to get the best > possible care for Lucy. I'm amazed at how many families on here travel to > see their doctors. I thought living this close to NYC we wouldn't have to > travel at all, but I guess casting is a very specific skill set that few > docs have in this country. > We are faxing our application to Shriner's tomorrow. I was waiting until I > got copies of my x-rays but I spoke to a woman who handles the application > process and she said to go ahead and send it without the x-rays and that > it would not delay the process. I hope she is right about that. I can't > get the x-rays until Thursday and the medical records will have to be > mailed to me, so probably next week at the earliest. She said if I fax the > application tomorrow I should hear back from someone the next day. I hope > this is correct. But I will definitely send the x-rays and medical records > as soon as I get them. I would LOVE for Lucy to be casted on her first > visit like your son was Amber. > Tomorrow is our appt with our current doc. I CANNOT WAIT to talk to him > and find out if he is on board with casting, and how experienced he is in > the process. Either way we will be getting a second opinion, hopefully at > Shriners if they accept us. I feel so hopeful and optimistic for the first > time since her diagnosis. This is largely due to THIS GROUP and all of the > information, advice and support. > I hope I can pay it forward one day when we are experts in the process > like you all are > > > >> >> > >> >> > 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...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 DITTO! > Cast. Hands down, just cast. Find an experienced doctor and cast. Unless > there is another underlying issue or other reason why casting should not > be done at this time. We tried the brace route and it did not go well. > My son went from 62 degrees before the brace to 85 degrees in about 8 > weeks time. His RVAD went well over 100 from the poorly made brace > exerting improper pressure. It was not a doctor who made his brace, but a > technician who had never done so before. The doctor ordered it, the tech > scratched her head and tried to fill the order. I know my son's case is a > little extreme compared to a lot of the kiddoes posted on this group, I > know there are many with other issues and more severe cases that read this > group but don't post due as their personal choice, and certainly many > others who read this group whose children run the spectrum from mild to > severe who also don't post, but I would say cast. Don't worry about the > problems that can arise, unless there is a reason not to cast, just cast > and take it as it comes. The benefits from casting versus not casting > unless there is a tethered cord or other condition that needs attention > first, or a urgent and strong contraindication to casting, are enormous. > My son may not even be the most ideal candidate for casting and I still > press to have him cast because I have seen the benefits it brings. It is > suggested that rods may be better for him in the near future, but I would > be hard pressed for him to take that road any time soon. I firmly believe > casting is excellent and a wonderful treatment for scoli kids because it > corrects as gently as possible and works towards placing their little > bodies in alignment and nothing else. > > Shauna Leamy > mother of Kelsey, Kieran, > > >> > >> > >> > >> > 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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