Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Oh , I am so sorry to hear that news. Don't worry though because did the same thing and it took a good year for his rvad to come down 15 degrees and his rotation to begin correcting. As soon as his rotation started getting better his RVAD decreased. His rvad used to be 51 and it is now 35 a year later his curve used to be 60 and now it is 48 out of the cast. I know this will be several more years of casting for our little guy. Ask him about your daughters rotation and feel free to tell him about . I think casting is the best option, I have never had a brace but have heard from some Mom's that their child progressed with a brace. You guys are in our prayers. Have faith and ask him to keep casting. last cast was on for almost 4 months and this was the best correction out of cast we have had. Good Luck . Love, Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 , did great in his cast. It was getting a little tight at the very end but he really did great in it. He has been really fussy since his cast has been removed, I think he misses his cast. His skin was fine and so was , a little red but by the next day it was fine. Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Hi Sorry to hear your news. My dd seems to be in a similar situation to yours. She too began casting last summer (june) with a curve of 62*. The first cast got it down to 38* but we haven't achieved much improvement since then (4*, which is within the margin of error). However, her doctors aren't willing to give up just yet and say there is still hope it will work. Even if it doesn't get her to 0* they will keep casting to maintain the curve. Single curves are harder to correct with casting than double curves (apparently). I know your doctor is great, but is there a chance that he just hasn't done enough casting to have seen a case that takes a little longer to correct? Not all cases are the same, and you have only been using this method for 8 or so months.The last time was xrayed out of the cast, her curve was at 58*, although this was a while ago and I don't know what it is now. Hang on in there. I think you should continue with the casting. Growing into a 40 degree curve is very different to growing into a 60 degree curve. She still has a lot of growing to do. The last cast had, there was only 6 weeks between them and it made no difference. I didn't want her to be casted that frequently if it wasn't making any difference, so we've gone back to 3 months. Unfortunately I don't know the answer to your qu. re fusion. Does she have a thoracic curve or a lumbar curve? This might make a difference, I don't know. Take care dmlmlm <dmayes1@...> wrote: Hi everyone!We have just returned from our forth trip to Erie. This trip was very discouraging - we now feel like we are back to helpless stage.For some background, is 26 months old. She was diagnosed with scoliosis at 6 months. The curve was at 28 degrees. After five months of "watching" (prescribed by our wonderful Orthopedic - who thinks casting is the old way of treating scoliosis), her curve progressed to 54 degrees. She was then fitted for a TLSO brace. She could not tolerate this brace - required oxygen to breath during the night. After discovering the Infantile Scoliosis Outreach Program, We contacted Dr. and he began casting in July of 2004. She went from a 64 degree curve to a 40 degree curve on the first casting. The problem is that Dr. cannot get any more correction and her curve goes right back to 60 after being out of the cast for 12 hours. This time he applied the cast and cut it off and tried again - still only down to 40 degrees. He spoke with us and stated that we will probably need to begin looking at other options. His last effort will be to change the cast more frequently. We are going back on March 15th to change this cast and see if he can get more correction. We wants to change it every two weeks to a month to see if more frequent manipulation will help. However, he does not have a lot of hope at this point. These frequent trips will not be easy with a 2 year old and a 1 month old - we live in Atlanta. He stated that is the only patient that he has casted that has not seen dramatic results and a chance for total correction. He is not sure why is not responding - he said possibly there is a fusion that is just not showing up yet.We asked what the other options were and he said growth rods or a brace (just to hold the curve). He was not confident that growth rods would work because her spine seems to be so stiff, he said that the spine may just grow around the rods. Obviously, bracing has not worked in the past. As I said, we are feeling very helpless again. I am looking for other suggestions ...Do any of you have similar experiences?Is there another group for parents of children with Scoliosis that might have more information?Has anyone had success with bracing for just holding the curve?We did tell Dr. that we would like to continue casting as long as possible to stop the curve from progressing. He said that the fusion surgery is more than likely in 's future. Does anyone know what age the child should be to have this surgery and not have difficulty because the spine stops growing?Thanks for any suggestions or help. Atlanta, GeorgiaSend instant messages to your online friends http://uk.messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Thanks so much for the response. 's curve is Thoracic. Who is your daughters doctor and how old is your daughter? I don't know how long Dr. has been casting. He is great! He did say he will be seeing Dr. Mehta in May (hopefully she will be able to make it to the states then) and he plans to consult with her about . I agree with you - even if we cannot get it to 0* then 40 is better than 60. We do plan to keep casting and Dr. is willing to continue. He is just concerned about the amount of travel that we are doing. Thanks again for reassuring me. . > > Hi everyone! > > We have just returned from our forth trip to Erie. This trip was > very discouraging - we now feel like we are back to helpless stage. > > For some background, is 26 months old. She was diagnosed > with scoliosis at 6 months. The curve was at 28 degrees. After five > months of " watching " (prescribed by our wonderful Orthopedic - who > thinks casting is the old way of treating scoliosis), her curve > progressed to 54 degrees. She was then fitted for a TLSO brace. > She could not tolerate this brace - required oxygen to breath during > the night. After discovering the Infantile Scoliosis Outreach > Program, We contacted Dr. and he began casting in > July of 2004. She went from a 64 degree curve to a 40 degree curve > on the first casting. The problem is that Dr. cannot get > any more correction and her curve goes right back to 60 after being > out of the cast for 12 hours. > > This time he applied the cast and cut it off and tried again - still > only down to 40 degrees. He spoke with us and stated that we will > probably need to begin looking at other options. His last effort > will be to change the cast more frequently. We are going back on > March 15th to change this cast and see if he can get more > correction. We wants to change it every two weeks to a month to see > if more frequent manipulation will help. However, he does not have > a lot of hope at this point. These frequent trips will not be easy > with a 2 year old and a 1 month old - we live in Atlanta. > > He stated that is the only patient that he has casted that > has not seen dramatic results and a chance for total correction. He > is not sure why is not responding - he said possibly there is > a fusion that is just not showing up yet. > > We asked what the other options were and he said growth rods or a > brace (just to hold the curve). He was not confident that growth > rods would work because her spine seems to be so stiff, he said that > the spine may just grow around the rods. Obviously, bracing has not > worked in the past. > > As I said, we are feeling very helpless again. I am looking for > other suggestions ... > > Do any of you have similar experiences? > > Is there another group for parents of children with Scoliosis that > might have more information? > > Has anyone had success with bracing for just holding the curve? > > We did tell Dr. that we would like to continue casting as > long as possible to stop the curve from progressing. He said that > the fusion surgery is more than likely in 's future. Does > anyone know what age the child should be to have this surgery and > not have difficulty because the spine stops growing? > > Thanks for any suggestions or help. > > > Atlanta, Georgia > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Thanks Crista! Please do keep us in your prayers as we will keep you in ours. Ultimately prayer is the best solution! He did not give us the rotation - he ususally does but I think he as so focused on the curve not correcting that he did not think to give us the rotation. Not to mention - he was dealing with a crying hormonal new mom! I will ask when we see him on the 15th. How does do with the cast on for 4 months? Dr. initially wanted to keep in the cast until the end of March but we did not want to go that long. We are so concerned about her skin. It is beginning to look bad to me now but Dr. said that it will probably get a lot worse He does not think that it is bad at all. Thanks again. > > > > Oh , > I am so sorry to hear that news. Don't worry though because did the > same thing and it took a good year for his rvad to come down 15 degrees and > his rotation to begin correcting. As soon as his rotation started getting > better his RVAD decreased. His rvad used to be 51 and it is now 35 a year later > his curve used to be 60 and now it is 48 out of the cast. I know this will be > several more years of casting for our little guy. Ask him about your > daughters rotation and feel free to tell him about . I think casting is the > best option, I have never had a brace but have heard from some Mom's that their > child progressed with a brace. You guys are in our prayers. Have faith and > ask him to keep casting. last cast was on for almost 4 months and > this was the best correction out of cast we have had. Good Luck . > > Love, > Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 We are in the UK and see Mr (we don't call consultants Drs) at the Royal National Orthopaedic Hospital at Stanmore. has just turned 2 and a half. Her curve is thoracic too. From the people I've spoken to, these seem to be the toughest to fix. Good luck with it all dmlmlm <dmayes1@...> wrote: Thanks so much for the response.'s curve is Thoracic.Who is your daughters doctor and how old is your daughter?I don't know how long Dr. has been casting. He is great! He did say he will be seeing Dr. Mehta in May (hopefully she will be able to make it to the states then) and he plans to consult with her about .I agree with you - even if we cannot get it to 0* then 40 is better than 60. We do plan to keep casting and Dr. is willing to continue. He is just concerned about the amount of travel that we are doing.Thanks again for reassuring me..> > Hi everyone!> > We have just returned from our forth trip to Erie. This trip was > very discouraging - we now feel like we are back to helpless stage.> > For some background, is 26 months old. She was diagnosed > with scoliosis at 6 months. The curve was at 28 degrees. After five > months of "watching" (prescribed by our wonderful Orthopedic - who > thinks casting is the old way of treating scoliosis), her curve > progressed to 54 degrees. She was then fitted for a TLSO brace. > She could not tolerate this brace - required oxygen to breath during > the night. After discovering the Infantile Scoliosis Outreach > Program, We contacted Dr. and he began casting in > July of 2004. She went from a 64 degree curve to a 40 degree curve > on the first casting. The problem is that Dr. cannot get > any more correction and her curve goes right back to 60 after being > out of the cast for 12 hours. > > This time he applied the cast and cut it off and tried again - still > only down to 40 degrees. He spoke with us and stated that we will > probably need to begin looking at other options. His last effort > will be to change the cast more frequently. We are going back on > March 15th to change this cast and see if he can get more > correction. We wants to change it every two weeks to a month to see > if more frequent manipulation will help. However, he does not have > a lot of hope at this point. These frequent trips will not be easy > with a 2 year old and a 1 month old - we live in Atlanta. > > He stated that is the only patient that he has casted that > has not seen dramatic results and a chance for total correction. He > is not sure why is not responding - he said possibly there is > a fusion that is just not showing up yet.> > We asked what the other options were and he said growth rods or a > brace (just to hold the curve). He was not confident that growth > rods would work because her spine seems to be so stiff, he said that > the spine may just grow around the rods. Obviously, bracing has not > worked in the past. > > As I said, we are feeling very helpless again. I am looking for > other suggestions ...> > Do any of you have similar experiences?> > Is there another group for parents of children with Scoliosis that > might have more information?> > Has anyone had success with bracing for just holding the curve?> > We did tell Dr. that we would like to continue casting as > long as possible to stop the curve from progressing. He said that > the fusion surgery is more than likely in 's future. Does > anyone know what age the child should be to have this surgery and > not have difficulty because the spine stops growing?> > Thanks for any suggestions or help.> > > Atlanta, Georgia> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Hi , Like the others said, I will keep you in our thoughts. I can only imagine how discouraged you must feel at this point. The good thing is that there is time to continue casting, and time to research other options. You said: <<He was not confident that growth rods would work because her spine seems to be so stiff, he said that the spine may just grow around the rods.>> The traditional growth rods could possibly have this outcome. However, the VEPTR/TRP rods are placed so this problem shouldn't happen. The VEPTR device may be something you could look into. I'm a little embarrassed about the mega-post I did earlier today, but hopefully it will give parents who need other options beside casting/bracing/observation information to help make informed choices for their children. Maybe you could get an evaluation appointment with one of the VEPTR centers. Since she is already a Shriner's patient, maybe you could get her to see Dr. Betz and his team (including Dr. D') at Shriners in Philly. They would be able to help you. I do know that they are looking for idiopathic cases to study - placing the VEPTR device and monitoring the patient progress. Good luck and know we care! Carmell Carmell mom to Kara 18, idiopathic scoliosis, Blake 13, GERD and Braydon 9, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. __________________________________ Celebrate 's 10th Birthday! Netrospective: 100 Moments of the Web http://birthday./netrospective/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 <<Has anyone had success with bracing for just holding the curve?>> Yes, we have, and we've also gone from 35º out of the brace down to 17º out of the brace, over a period of 3.5 years of wearing it full time. However, my daughter's curve is very flexible. Nola, Bronwen's mom -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.6.2 - Release Date: 3/4/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 Hi, my name is Robin & I too have a child who casting was not an option for. At 12 months his scolio was at 58 and had rotation & rib hump. We went to SLC for consult, but was told his scoli was too ridgid & casting would only further reduce his already diminished pulmonary condition. Our ortho in Denver said that the only hope would be to place grow rods & have his spine fused. I was unwilling to accept that. That's when I discovered Dr.Campbel in San who pioneered the Titanium Rib Project-VEPTR.COM. Until recently, the FDA had approved this procedure only for rib diformaties, but my son Connor is the 1st to receive FDA compassionate use appeal for scoliosis.This procedure had been done many times for scoli kids while in clinical trials for 17 years, but was not included in the final devise approval. Connor is now at 72 degrees, 19 months old & waiting for a surgery date. This may be an option for you as well. There is no spinal fusion and they almost always expect close to total correction, outpatient surgery for expansion, much less envasive. There are now many doctors around the country doing this, I hope it is useful, check the website & photo's. Good luck! >From: Hamer <mumtoerin@...> >Reply-infantile scoliosis treatment >infantile scoliosis treatment >Subject: Re: Casting is not working .. What now? >Date: Fri, 4 Mar 2005 19:03:46 +0000 (GMT) > >Hi > >Sorry to hear your news. My dd seems to be in a similar situation to yours. >She too began casting last summer (june) with a curve of 62*. The first >cast got it down to 38* but we haven't achieved much improvement since then >(4*, which is within the margin of error). However, her doctors aren't >willing to give up just yet and say there is still hope it will work. Even >if it doesn't get her to 0* they will keep casting to maintain the curve. >Single curves are harder to correct with casting than double curves >(apparently). I know your doctor is great, but is there a chance that he >just hasn't done enough casting to have seen a case that takes a little >longer to correct? Not all cases are the same, and you have only been using >this method for 8 or so months.The last time was xrayed out of the >cast, her curve was at 58*, although this was a while ago and I don't know >what it is now. > >Hang on in there. I think you should continue with the casting. Growing >into a 40 degree curve is very different to growing into a 60 degree curve. >She still has a lot of growing to do. The last cast had, there was >only 6 weeks between them and it made no difference. I didn't want her to >be casted that frequently if it wasn't making any difference, so we've gone >back to 3 months. > >Unfortunately I don't know the answer to your qu. re fusion. Does she have >a thoracic curve or a lumbar curve? This might make a difference, I don't >know. > >Take care > > >dmlmlm <dmayes1@...> wrote: > >Hi everyone! > >We have just returned from our forth trip to Erie. This trip was >very discouraging - we now feel like we are back to helpless stage. > >For some background, is 26 months old. She was diagnosed >with scoliosis at 6 months. The curve was at 28 degrees. After five >months of " watching " (prescribed by our wonderful Orthopedic - who >thinks casting is the old way of treating scoliosis), her curve >progressed to 54 degrees. She was then fitted for a TLSO brace. >She could not tolerate this brace - required oxygen to breath during >the night. After discovering the Infantile Scoliosis Outreach >Program, We contacted Dr. and he began casting in >July of 2004. She went from a 64 degree curve to a 40 degree curve >on the first casting. The problem is that Dr. cannot get >any more correction and her curve goes right back to 60 after being >out of the cast for 12 hours. > >This time he applied the cast and cut it off and tried again - still >only down to 40 degrees. He spoke with us and stated that we will >probably need to begin looking at other options. His last effort >will be to change the cast more frequently. We are going back on >March 15th to change this cast and see if he can get more >correction. We wants to change it every two weeks to a month to see >if more frequent manipulation will help. However, he does not have >a lot of hope at this point. These frequent trips will not be easy >with a 2 year old and a 1 month old - we live in Atlanta. > >He stated that is the only patient that he has casted that >has not seen dramatic results and a chance for total correction. He >is not sure why is not responding - he said possibly there is >a fusion that is just not showing up yet. > >We asked what the other options were and he said growth rods or a >brace (just to hold the curve). He was not confident that growth >rods would work because her spine seems to be so stiff, he said that >the spine may just grow around the rods. Obviously, bracing has not >worked in the past. > >As I said, we are feeling very helpless again. I am looking for >other suggestions ... > >Do any of you have similar experiences? > >Is there another group for parents of children with Scoliosis that >might have more information? > >Has anyone had success with bracing for just holding the curve? > >We did tell Dr. that we would like to continue casting as >long as possible to stop the curve from progressing. He said that >the fusion surgery is more than likely in 's future. Does >anyone know what age the child should be to have this surgery and >not have difficulty because the spine stops growing? > >Thanks for any suggestions or help. > > >Atlanta, Georgia > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 Nola, Do you know what your Daughters Rvad is or was? Just curious because that would make a huge difference with a brace. A child with a large curve and large Rvad will not benefit from brace wearing because you cannot derotate the curve with a brace. Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 My understanding is that you can't get an RVAD reading with a lumbar curve....or am I mistaken? In any case, the fact that her curve was 35º at its largest and her spine is very flexible bodes well for her treatment with a brace. Nola -----Original Message-----From: cristab@... [mailto:cristab@...]Sent: Saturday, March 05, 2005 5:06 PMinfantile scoliosis treatment Subject: Re: Casting is not working .. What now?Nola,Do you know what your Daughters Rvad is or was? Just curious because that would make a huge difference with a brace. A child with a large curve and large Rvad will not benefit from brace wearing because you cannot derotate the curve with a brace.Crista Quote Link to comment Share on other sites More sharing options...
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