Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 I think there are a lot of families on here that get treatment in the NYC area I'm sure one of them will give you some ideas. Our local Peds ortho (who casts, but we went with someone w/more experience in Mehta casting out of state) flat out told us that he didn't put any stock into bracing for infants. He'd do it if that was what we wanted, but he didn't think highly of it as a treatment for our situation....like using a retainer for crocked teeth without going through the process of braces first. Maybe your docs just trying to avoid the anesthesia required for casting? I guess we aren't to the bracing stage yet but do they need anesthesia for creating a mold for a brace too? Amber mommy to Levi > Hello everyone, my 17-month-old daughter Lucy was diagnosed with infantile > scoliosis in November with a 30 degree curve. Her doctor wants to put her > in a brace, he says its best to try the brace first before possibly moving > to casting, since the brace is less invasive. He says a brace can correct > her spine and we should try it. I'm not convinced. Everything I'm reading > says that bracing will not correct her curve, and at best will just keep > it from getting worse. This seems like a huge waste of time to me. I > really want to do casting ASAP especially since I'm reading that the > results are much better if done before the age of 2. We have another appt > with our doc next week to discuss this. His practice is trained in Mehta > casting but if he's not on board to cast her or if he still insists we > brace first, then I need to get a second opinion. Problem is I don't even > know where to go for a second opinion. > Does anyone live in the NYC area and can recommend a good casting doctor? > Also has anyone had success (or heard of anyone who has) with bracing > alone? Is there something I'm missing here - why is my doc telling me that > bracing works when everything I'm reading says otherwise? > So sorry for the novel. I have a lot of questions and worries and so few > answers. I would appreciate any advice this group can give. Thank you so > much everyone. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 , I would get a second doctor’s opinion. Your daughter is the perfect age to start casting with the chance of getting her to 0 degrees. My daughter didn’t get her first cast until 29 months (due to delayed diagnosis), and now we’re hoping to KEEP her around 30 until she’s fully grown. She started at 49 degrees. Everything I’ve heard is that a brace can hold a curve, but do not correct one. I know of several NYC families that go to Philadelphia Shriners, which is also where my daughter is treated. She just received cast #8, and we are very happy there. The first cast was a tough adjustment for her & me. I have heard from many parents that their children did better in the first cast than we did. Now, my daughter is a pro, involved in a lot of activities while casted, and she hardly notices it’s there anymore. She says she likes the brace better, but we will put her into another cast (#9) before she is braced again for the summer. Best wishes, Sherry My daughter Lucy Hello everyone, my 17-month-old daughter Lucy was diagnosed with infantile scoliosis in November with a 30 degree curve. Her doctor wants to put her in a brace, he says its best to try the brace first before possibly moving to casting, since the brace is less invasive. He says a brace can correct her spine and we should try it. I'm not convinced. Everything I'm reading says that bracing will not correct her curve, and at best will just keep it from getting worse. This seems like a huge waste of time to me. I really want to do casting ASAP especially since I'm reading that the results are much better if done before the age of 2. We have another appt with our doc next week to discuss this. His practice is trained in Mehta casting but if he's not on board to cast her or if he still insists we brace first, then I need to get a second opinion. Problem is I don't even know where to go for a second opinion. Does anyone live in the NYC area and can recommend a good casting doctor? Also has anyone had success (or heard of anyone who has) with bracing alone? Is there something I'm missing here - why is my doc telling me that bracing works when everything I'm reading says otherwise? So sorry for the novel. I have a lot of questions and worries and so few answers. I would appreciate any advice this group can give. Thank you so much everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 You need to get casted. You are the parent and they need to listen to your decision. I woudl suggest Rochester, NY with Dr. S for a second opinion in NY. Casting is most effective if started before 20 months and under 50 degree curve. Unfortunatly around that 18 month mark they grow a ton and I woudl try to get in a cast so that it is corrective, My guess is that you would be looking at 4-5 casts at her age and curve. Absolutely get a second opinion or demand the cast asap. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 ,From what I know Dr. S at the URMC is excellent. Also our son Landon is being treated by Dr. C who is mainly in Shriners Philly, but also works out of Erie,PA. That is where we go from Pittsburgh, PA. He is also excellent. I guess it depends on which is closer for you. There is a great list of docs on the file section with contact info.-LeoSent from my iPhoneOn Jan 6, 2012, at 2:44 PM, "SR Clancy" <svale88@...> wrote: , I would get a second doctor’s opinion. Your daughter is the perfect age to start casting with the chance of getting her to 0 degrees. My daughter didn’t get her first cast until 29 months (due to delayed diagnosis), and now we’re hoping to KEEP her around 30 until she’s fully grown. She started at 49 degrees. Everything I’ve heard is that a brace can hold a curve, but do not correct one. I know of several NYC families that go to Philadelphia Shriners, which is also where my daughter is treated. She just received cast #8, and we are very happy there. The first cast was a tough adjustment for her & me. I have heard from many parents that their children did better in the first cast than we did. Now, my daughter is a pro, involved in a lot of activities while casted, and she hardly notices it’s there anymore. She says she likes the brace better, but we will put her into another cast (#9) before she is braced again for the summer. Best wishes, Sherry My daughter Lucy Hello everyone, my 17-month-old daughter Lucy was diagnosed with infantile scoliosis in November with a 30 degree curve. Her doctor wants to put her in a brace, he says its best to try the brace first before possibly moving to casting, since the brace is less invasive. He says a brace can correct her spine and we should try it. I'm not convinced. Everything I'm reading says that bracing will not correct her curve, and at best will just keep it from getting worse. This seems like a huge waste of time to me. I really want to do casting ASAP especially since I'm reading that the results are much better if done before the age of 2. We have another appt with our doc next week to discuss this. His practice is trained in Mehta casting but if he's not on board to cast her or if he still insists we brace first, then I need to get a second opinion. Problem is I don't even know where to go for a second opinion. Does anyone live in the NYC area and can recommend a good casting doctor? Also has anyone had success (or heard of anyone who has) with bracing alone? Is there something I'm missing here - why is my doc telling me that bracing works when everything I'm reading says otherwise? So sorry for the novel. I have a lot of questions and worries and so few answers. I would appreciate any advice this group can give. Thank you so much everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 Definately hands down push for cast. You stand a great chance at this moment in time to achieve great results w Mehta. Please don't let the moment slip by. A brace may hold a curve but won't correct it. My son wore a brace for 2 years and it didn't even hold his curve though it may have slowed progression. Get a second opinion and do it asap. Tame Sent from my iPhone On Jan 6, 2012, at 1:25 PM, " Quartuccio " <kellyq5349@...> wrote: Hello everyone, my 17-month-old daughter Lucy was diagnosed with infantile scoliosis in November with a 30 degree curve. Her doctor wants to put her in a brace, he says its best to try the brace first before possibly moving to casting, since the brace is less invasive. He says a brace can correct her spine and we should try it. I'm not convinced. Everything I'm reading says that bracing will not correct her curve, and at best will just keep it from getting worse. This seems like a huge waste of time to me. I really want to do casting ASAP especially since I'm reading that the results are much better if done before the age of 2. We have another appt with our doc next week to discuss this. His practice is trained in Mehta casting but if he's not on board to cast her or if he still insists we brace first, then I need to get a second opinion. Problem is I don't even know where to go for a second opinion. Does anyone live in the NYC area and can recommend a good casting doctor? Also has anyone had success (or heard of anyone who has) with bracing alone? Is there something I'm missing here - why is my doc telling me that bracing works when everything I'm reading says otherwise? So sorry for the novel. I have a lot of questions and worries and so few answers. I would appreciate any advice this group can give. Thank you so much everyone. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2012 Report Share Posted January 7, 2012 All I know is we are in the same place as you and have reached the same conclusion from our research. Our son is 15 months old and we go on the 16th to Shriners in Erie, PA for our meeting with Dr. C and if things go well, Brayden will get his first cast the next day. We didn't want to wait any longer (as we had waited because the doctor thought it was getting better) to start the process that could get him as close to 0 degrees (if not there) as we could. We did a a lot of research and my sister who is a doctor and talked to her friend who is an orthopedic doctor recommended casting and talked highly of Erie, PA. I would ask for research from your doctor showing that bracing would correct the problem, because we sure haven't found any. To us correcting the problem, even if more involved, was better than prolonging it and Brayden possibly needing spine surgery. Not to say he still won't, but we'd prefer to lower that chance as much as possible. Good luck and know you aren't alone...we are right there with you and having tons of questions ourselves. Curt, Eryn, and Brayden > > Hello everyone, my 17-month-old daughter Lucy was diagnosed with infantile scoliosis in November with a 30 degree curve. Her doctor wants to put her in a brace, he says its best to try the brace first before possibly moving to casting, since the brace is less invasive. He says a brace can correct her spine and we should try it. I'm not convinced. Everything I'm reading says that bracing will not correct her curve, and at best will just keep it from getting worse. This seems like a huge waste of time to me. I really want to do casting ASAP especially since I'm reading that the results are much better if done before the age of 2. We have another appt with our doc next week to discuss this. His practice is trained in Mehta casting but if he's not on board to cast her or if he still insists we brace first, then I need to get a second opinion. Problem is I don't even know where to go for a second opinion. > Does anyone live in the NYC area and can recommend a good casting doctor? Also has anyone had success (or heard of anyone who has) with bracing alone? Is there something I'm missing here - why is my doc telling me that bracing works when everything I'm reading says otherwise? > So sorry for the novel. I have a lot of questions and worries and so few answers. I would appreciate any advice this group can give. Thank you so much everyone. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2012 Report Share Posted January 7, 2012 Hey ! You must get casted ASAP! Time is of the essence! I would not even meet with this Dr. for more discussion. If he is already pushing for bracing I would just find a Mehta trained Dr. with the proper table ect. and get started. My Daughter Sierra’s 34 degree curve was diagnosed at 11 mo. although I had noticed it at 9 mo. and everyone though I was crazy. I found with the help of ISOP and most importantly Dr. K in B’ham Alabama. He was trained by Dr. Mehta. He wanted to cast that very week and told me straight up that a brace what NOT correct and sometimes not hold. We started casting at 12 mo. the day after Sierra’s B’day in April 2010. We are now on our 9th cast...Sierra is down to 9 degrees OUT of cast and –6 IN cast. Sierra has a very stiff spine but we are getting there. Dr. K said she would be in the 60’s or 70’s if we had not casted when we did. We live on the Gulf Coast of Alabama..it is very hot and humid and we & Sierra has handled the cast wonderfully. I’m not saying it has not been difficult at times...no swimming, no boating, no beach...but it has been totally worth it. We go about 12 weeks at a time and my husband cuts the cast off at home the day before the next casting. The cast is doable!!!!! There is a video on You tube of Dr. K explaining the casting technique and actually casting a child. I will do anything to make sure Sierra does not have to have any type of Invasive surgical procedures. Sierra will be 3 yrs. in April..2 yrs. of casting and Dr. k said he would cast until we got total correction or at least comfortable enough to go to a brace. We go back in March 2012 for either 10th cast or possibly a brace. Sierra has the best personality...she is a go getter..the cast does not slow her down one bit. She also has a 4 yr. old Sister named Summer and she matches her toe to toe on everything. Sierra just started dance in August and is doing great! Please get into a casting Dr. and get the process started. The sooner the better. I know it is scary, but it is the best thing you can do for Lucy! Let me know if you have any questions or concerns I will be glad to help! Welcome to CAST and ISOP! You are in the right place and the information you can gain here is endless! Best of luck and keep us posted! Kristi mommy to Sierra. I’m on FB at Kristi Strickland ...I have pic’s of Sierra’s X-rays and links to Dr. K’s You tube Video! From: Quartuccio Sent: Friday, January 06, 2012 1:25 PM infantile scoliosis treatment Subject: My daughter Lucy Hello everyone, my 17-month-old daughter Lucy was diagnosed with infantile scoliosis in November with a 30 degree curve. Her doctor wants to put her in a brace, he says its best to try the brace first before possibly moving to casting, since the brace is less invasive. He says a brace can correct her spine and we should try it. I'm not convinced. Everything I'm reading says that bracing will not correct her curve, and at best will just keep it from getting worse. This seems like a huge waste of time to me. I really want to do casting ASAP especially since I'm reading that the results are much better if done before the age of 2. We have another appt with our doc next week to discuss this. His practice is trained in Mehta casting but if he's not on board to cast her or if he still insists we brace first, then I need to get a second opinion. Problem is I don't even know where to go for a second opinion. Does anyone live in the NYC area and can recommend a good casting doctor? Also has anyone had success (or heard of anyone who has) with bracing alone? Is there something I'm missing here - why is my doc telling me that bracing works when everything I'm reading says otherwise? So sorry for the novel. I have a lot of questions and worries and so few answers. I would appreciate any advice this group can give. Thank you so much everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 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 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 Welcome to CAST, ! Try consulting Rochester, Philly or Stanley in NYC. Please communicate with all 3 to determine which facility/doc would be the best fit for you daughter & family...If the doc believes a brace would assist in resolving Lucy's scoli permanently ask him to provide you with published documentation (articles) on the effectiveness of bracing an infant...I would go with your maternal intuition on this one. ~And, keep the questions coming. You're on the right track by doing research. Please keep us posted. Sincerely, HRH > Hello everyone, my 17-month-old daughter Lucy was diagnosed with infantile > scoliosis in November with a 30 degree curve. Her doctor wants to put her > in a brace, he says its best to try the brace first before possibly moving > to casting, since the brace is less invasive. He says a brace can correct > her spine and we should try it. I'm not convinced. Everything I'm reading > says that bracing will not correct her curve, and at best will just keep > it from getting worse. This seems like a huge waste of time to me. I > really want to do casting ASAP especially since I'm reading that the > results are much better if done before the age of 2. We have another appt > with our doc next week to discuss this. His practice is trained in Mehta > casting but if he's not on board to cast her or if he still insists we > brace first, then I need to get a second opinion. Problem is I don't even > know where to go for a second opinion. > Does anyone live in the NYC area and can recommend a good casting doctor? > Also has anyone had success (or heard of anyone who has) with bracing > alone? Is there something I'm missing here - why is my doc telling me that > bracing works when everything I'm reading says otherwise? > So sorry for the novel. I have a lot of questions and worries and so few > answers. I would appreciate any advice this group can give. Thank you so > much everyone. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 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 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 10, 2012 Report Share Posted January 10, 2012 It sounds like rib humps often get confused for uneven muscle development. That's what we intially thought (and hoped) in our case, too. I would suggest you find a doctor with the most experience possible. In our case, anesthesia has been the lease of our worries. If you find a good doctor who's really considerate to your child's needs, you shouldn't have too much trouble with skin issues, either. There are creative ways to keep your child as clean and as comfortable as possible, in spite of the cast. But beware, because -- in our experience -- some doctors are less concerned about hygiene and potential skin irritation. Good for you for asking these questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 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 know what you mean about not expecting to have to travel away from such a big city to find adequate treatment. We live in the Seattle area and tried two specialists up here, but finally ended up making the trip down to SLC Shriners in Utah. It was SOOO worth the airfare! They really take care of you, too. Between the complimentary shuttle service, the Mc House and the parent and patient lounges, I didn't have to worry about anything (or spend much more) after we bought the plane tickets. Experience makes a huge difference. After several very discouraging months of false hopes, we FINALLY saw some real progress in our daughter's case. I wish I had joined this group from the moment we found out about our daughter's diagnosis. The information I've found here has made all the difference for us. I agree with some other parent's comment about the irony of the "hypocratic oath" in these cases: so many doctors seem to claim they know how to treat it, but end up just wasting our time. You sound like a very good parent. Good luck!!! ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 , I know what you mean about not expecting to have to travel away from such a big city to find adequate treatment. We live in the Seattle area and tried two specialists up here, but finally ended up making the trip down to SLC Shriners in Utah. It was SOOO worth the airfare! They really take care of you, too. Between the complimentary shuttle service, the Mc House and the parent and patient lounges, I didn't have to worry about anything (or spend much more) after we bought the plane tickets. Experience makes a huge difference. After several very discouraging months of false hopes, we FINALLY saw some real progress in our daughter's case. I wish I had joined this group from the moment we found out about our daughter's diagnosis. The information I've found here has made all the difference for us. I agree with some other parent's comment about the irony of the "hypocratic oath" in these cases: so many doctors seem to claim they know how to treat it, but end up just wasting our time. You sound like a very good parent. Good luck!!! ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2012 Report Share Posted January 12, 2012 Hi everyone, I wanted to provide an update on our little girl! We saw her doctor yesterday to ask why he wants to brace and not cast. He said he believes her curve has a good chance at resolving and that if we brace her for a couple months we can see if she is resolving, if so great, and if not we would cast right away. Then he said since her x-rays are already 2 months old lets do more today and see what if anything has happened in the last 2 months. Wouldn't you know it she progressed. Only 4 degrees but it was enough that he said he wants her casted. His colleague Dr. V at NY Presbyterian does the casting. Lucy is scheduled for Friday Feb 3!! We are happy, scared and sad all at once. This is exactly what I wanted but now we have a whole new set of challenges and fears. As you guys know i have not been thrilled with my doctor in the past but since he is not the one doing the casting I do think we are going to stick with this practice. I have heard great things about Dr V and obviously we prefer to stay in the NY area rather than travel. We are going to set a meeting with Dr. V before the casting to discuss everything. Has anyone on here had their child casted by this doctor? I would love to hear some opinions. Not sure if that is against the rules or not, if so you can send me a private message. As always, a million thanks to this group. > > , > > I know what you mean about not expecting to have to travel away from such a big city to find adequate treatment. We live in the Seattle area and tried two specialists up here, but finally ended up making the trip down to SLC Shriners in Utah. It was SOOO worth the airfare! They really take care of you, too. Between the complimentary shuttle service, the Mc House and the parent and patient lounges, I didn't have to worry about anything (or spend much more) after we bought the plane tickets. > > Experience makes a huge difference. After several very discouraging months of false hopes, we FINALLY saw some real progress in our daughter's case. I wish I had joined this group from the moment we found out about our daughter's diagnosis. The information I've found here has made all the difference for us. > I agree with some other parent's comment about the irony of the " hypocratic oath " in these cases: so many doctors seem to claim they know how to treat it, but end up just wasting our time. > > You sound like a very good parent. Good luck!!! > ~ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 Will do. Thanks so much ...and all of you! > >> > >> , > >> > >> I know what you mean about not expecting to have to travel away from > >> such a big city to find adequate treatment. We live in the Seattle area > >> and tried two specialists up here, but finally ended up making the trip > >> down to SLC Shriners in Utah. It was SOOO worth the airfare! They really > >> take care of you, too. Between the complimentary shuttle service, the > >> Mc House and the parent and patient lounges, I didn't have > >> to worry about anything (or spend much more) after we bought the plane > >> tickets. > >> > >> Experience makes a huge difference. After several very discouraging > >> months of false hopes, we FINALLY saw some real progress in our > >> daughter's case. I wish I had joined this group from the moment we found > >> out about our daughter's diagnosis. The information I've found here has > >> made all the difference for us. > >> I agree with some other parent's comment about the irony of the > >> " hypocratic oath " in these cases: so many doctors seem to claim they > >> know how to treat it, but end up just wasting our time. > >> > >> You sound like a very good parent. Good luck!!! > >> ~ > >> > > > > > > > Quote Link to comment Share on other sites More sharing options...
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