Guest guest Posted November 19, 2011 Report Share Posted November 19, 2011 Hello all. went for his second cast yesterday at Shriners Philly, and I was, albeit, a little discouraged. His pre-cast standing COBB was 44, and his COBB after cast #1 is still 40. Also, I was originally told that his pre-cast standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51 (using the same original X-ray in which he measured it to be 27 two months ago). THAT is really conflicting and confusing to me. Anyways, 's new RVAD is 23. So ... if his RVAD did, in fact, change from 51 to 23, that's great ... but if it was 27 (as I was originally told) and down to 23, I am discouraged by that as well. I will find out the CORRECT numbers this week when I talk to nurse S. However, I am just sooooo discouraged that Jax only got 4 degrees of correction after 9 full weeks in his cast. It seems like every story I have read on the ISOP website the kids got WAY better correction than that. Also, 's roommate (for both casts) got 0 degrees correction. It was just a bummer of a day in general. Has anyone else experienced that the first cast didn't correct the COBB very much, but subsequent casts did better? Please let me know your experiences! Thanks so much! Love, Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2011 Report Share Posted November 19, 2011 Hi Jen, My daughter also sees Dr. C in Philly. Three different drs read her original diagnostic xray at 40, 44, & 49 degrees. All three from different practices/hospitals. Dr. C read the last one. I don’t know what her RVAD was, but she had a visible rib hump. If the same person read the same xray several times, I’m sure they’d come up with a range of values. Who read the RVAD of 27 for ? Was it Dr C, someone else on his staff, or at a different practice? Knowing who read it will give you understanding of the numbers, but it doesn’t take away the shock and frustration of being given vastly differing numbers. After two casts, my daughter went from 49 to 37 degrees. This is not a huge change compared to what some others report. But it IS correction. We didn’t do an out-of-cast xray between casts #1 & 2. Between casts #3 and 5, she only saw 5 degrees of improvement. So over four casts, she saw 17 degrees of improvement, which is only 4.25 degrees per cast on average. I figured a few things – first, my daughter was older (29 months at first casting) so her growth spurts are further between than younger kids & for a few casts, I don’t think she’s grown at all during the time period. It sounds like some kids’ curves are more flexible, and others are stiffer. Are stiffer curves more resistant to change, but then once they correct, do they remain just as resistant to getting worse as they are to getting better? Do more flexible curves maintain the correction when out of cast or are they more prone to relapsing? I don’t know. Are there trends or relationships, or are we all really looking at every kid being totally different? Looking back at my notes, by the time cast #3 was removed, that is, six months into casting, the rib hump was completely gone. I will need to ask for a print-out of RVAD progression in January. Her last out-of cast reading was 27 degrees. In cast, she is 19. I believe she is growing now after not growing much all summer. I’m hoping for more correction come January!! BTW – she is in cast #7 and is tolerating it very well. Her limbs are longer, she can do more “around” the cast including dance, soccer, gymnastics, running, going up & down steps, climbing in & out of the car and carseat, and she’s almost completely potty trained now. It does get easier. I find that casting days are kinda hectic for everyone down there. I would ask for a print out of the numbers each time – don’t go on verbal numbers alone. I’ve learned to focus on the progression of numbers instead of the actual numbers themselves. I can understand it is hard to focus on the progression when you only have two data points (before cast #1 and before cast #2). It is scary and frustrating to put your child through this, hoping every day it is doing something, frustrated with every tear (mine and hers!), complaint, diaper accident, falls, bumps/bruises/scratches, denial for requested activities, missed swim birthday parties…oh goodness, all of us so understand! Hang in there, and know that you are doing the tough but best thing. saw some correction - hopefully he will see more, and that it will continue! I keep telling myself that this is a million times better than the alternatives of rods, braces that don’t correct, etc. Sherry a little discouraged Hello all. went for his second cast yesterday at Shriners Philly, and I was, albeit, a little discouraged. His pre-cast standing COBB was 44, and his COBB after cast #1 is still 40. Also, I was originally told that his pre-cast standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51 (using the same original X-ray in which he measured it to be 27 two months ago). THAT is really conflicting and confusing to me. Anyways, 's new RVAD is 23. So ... if his RVAD did, in fact, change from 51 to 23, that's great .... but if it was 27 (as I was originally told) and down to 23, I am discouraged by that as well. I will find out the CORRECT numbers this week when I talk to nurse S. However, I am just sooooo discouraged that Jax only got 4 degrees of correction after 9 full weeks in his cast. It seems like every story I have read on the ISOP website the kids got WAY better correction than that. Also, 's roommate (for both casts) got 0 degrees correction. It was just a bummer of a day in general. Has anyone else experienced that the first cast didn't correct the COBB very much, but subsequent casts did better? Please let me know your experiences! Thanks so much! Love, Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2011 Report Share Posted November 19, 2011 Sherry you are one of my all time favorite posters (hmmm is that a word) I just love reading your posts:) They r always so uplifting!TSent from my iPhoneOn Nov 19, 2011, at 3:20 PM, "SR Clancy" <svale88@...> wrote: Hi Jen, My daughter also sees Dr. C in Philly. Three different drs read her original diagnostic xray at 40, 44, & 49 degrees. All three from different practices/hospitals. Dr. C read the last one. I don’t know what her RVAD was, but she had a visible rib hump. If the same person read the same xray several times, I’m sure they’d come up with a range of values. Who read the RVAD of 27 for ? Was it Dr C, someone else on his staff, or at a different practice? Knowing who read it will give you understanding of the numbers, but it doesn’t take away the shock and frustration of being given vastly differing numbers. After two casts, my daughter went from 49 to 37 degrees. This is not a huge change compared to what some others report. But it IS correction. We didn’t do an out-of-cast xray between casts #1 & 2. Between casts #3 and 5, she only saw 5 degrees of improvement. So over four casts, she saw 17 degrees of improvement, which is only 4.25 degrees per cast on average. I figured a few things – first, my daughter was older (29 months at first casting) so her growth spurts are further between than younger kids & for a few casts, I don’t think she’s grown at all during the time period. It sounds like some kids’ curves are more flexible, and others are stiffer. Are stiffer curves more resistant to change, but then once they correct, do they remain just as resistant to getting worse as they are to getting better? Do more flexible curves maintain the correction when out of cast or are they more prone to relapsing? I don’t know. Are there trends or relationships, or are we all really looking at every kid being totally different? Looking back at my notes, by the time cast #3 was removed, that is, six months into casting, the rib hump was completely gone. I will need to ask for a print-out of RVAD progression in January. Her last out-of cast reading was 27 degrees. In cast, she is 19. I believe she is growing now after not growing much all summer. I’m hoping for more correction come January!! BTW – she is in cast #7 and is tolerating it very well. Her limbs are longer, she can do more “around†the cast including dance, soccer, gymnastics, running, going up & down steps, climbing in & out of the car and carseat, and she’s almost completely potty trained now. It does get easier. I find that casting days are kinda hectic for everyone down there. I would ask for a print out of the numbers each time – don’t go on verbal numbers alone. I’ve learned to focus on the progression of numbers instead of the actual numbers themselves. I can understand it is hard to focus on the progression when you only have two data points (before cast #1 and before cast #2). It is scary and frustrating to put your child through this, hoping every day it is doing something, frustrated with every tear (mine and hers!), complaint, diaper accident, falls, bumps/bruises/scratches, denial for requested activities, missed swim birthday parties…oh goodness, all of us so understand! Hang in there, and know that you are doing the tough but best thing. saw some correction - hopefully he will see more, and that it will continue! I keep telling myself that this is a million times better than the alternatives of rods, braces that don’t correct, etc. Sherry a little discouraged Hello all. went for his second cast yesterday at Shriners Philly, and I was, albeit, a little discouraged. His pre-cast standing COBB was 44, and his COBB after cast #1 is still 40. Also, I was originally told that his pre-cast standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51 (using the same original X-ray in which he measured it to be 27 two months ago). THAT is really conflicting and confusing to me. Anyways, 's new RVAD is 23. So ... if his RVAD did, in fact, change from 51 to 23, that's great .... but if it was 27 (as I was originally told) and down to 23, I am discouraged by that as well. I will find out the CORRECT numbers this week when I talk to nurse S. However, I am just sooooo discouraged that Jax only got 4 degrees of correction after 9 full weeks in his cast. It seems like every story I have read on the ISOP website the kids got WAY better correction than that. Also, 's roommate (for both casts) got 0 degrees correction. It was just a bummer of a day in general. Has anyone else experienced that the first cast didn't correct the COBB very much, but subsequent casts did better? Please let me know your experiences! Thanks so much! Love, Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2011 Report Share Posted November 19, 2011 Thanks to all who have posted so far. To shed a little more light on some of the questions I was asked ... began casting at 16 months, so because he was young, I was certainly hoping to see better numbers. Also, for the discrepancy in the two RVAD readings, BOTH were read by Dr. C, and BOTH were from the same X-ray. VERY frustrating! Hopefully, S will be able to tell me which is correct. Also, to Amber-- as far as I understand, the COBB is just another word for curve/degree! Hope that helps! Take care all, and keep the replies coming! Love, Jen > > Hello all. > went for his second cast yesterday at Shriners Philly, and I was, albeit, a little discouraged. His pre-cast standing COBB was 44, and his COBB after cast #1 is still 40. Also, I was originally told that his pre-cast standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51 (using the same original X-ray in which he measured it to be 27 two months ago). THAT is really conflicting and confusing to me. Anyways, 's new RVAD is 23. So ... if his RVAD did, in fact, change from 51 to 23, that's great ... but if it was 27 (as I was originally told) and down to 23, I am discouraged by that as well. I will find out the CORRECT numbers this week when I talk to nurse S. However, I am just sooooo discouraged that Jax only got 4 degrees of correction after 9 full weeks in his cast. It seems like every story I have read on the ISOP website the kids got WAY better correction than that. Also, 's roommate (for both casts) got 0 degrees correction. It was just a bummer of a day in general. > > Has anyone else experienced that the first cast didn't correct the COBB very much, but subsequent casts did better? Please let me know your experiences! Thanks so much! > > Love, > Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2011 Report Share Posted November 20, 2011 , If I understand your email correctly, this most recent xray was out of cast....Is that correct? I think in alot of cases, out of cast x rays are not done each time so those numbers are unknowns for a significant amount of time. My guess is the big increases in numbers that you see from other members are correction numbers in cast. If you are getting good in cast correction, I think you have every reason to be hopeful for the long term at this point. I'm sorry you have to wait through the weekend to talk with your nurse and work through the discrepancies...I know that's a tough place to be in. Sometimes I have to make a consious effort to just tuck it away in my mind until I can do something, or talk to someone when Monday comes around. I would give that a try and in the meantime just snuggle your little guy and know that you really are on the right track, you got an early start and your doing everything you can. Hang in there! Ann Boros www.curvybaby.comjayann_24@... To: infantile scoliosis treatment From: jaheath86@...Date: Sat, 19 Nov 2011 20:24:11 +0000Subject: a little discouraged Hello all. went for his second cast yesterday at Shriners Philly, and I was, albeit, a little discouraged. His pre-cast standing COBB was 44, and his COBB after cast #1 is still 40. Also, I was originally told that his pre-cast standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51 (using the same original X-ray in which he measured it to be 27 two months ago). THAT is really conflicting and confusing to me. Anyways, 's new RVAD is 23. So ... if his RVAD did, in fact, change from 51 to 23, that's great ... but if it was 27 (as I was originally told) and down to 23, I am discouraged by that as well. I will find out the CORRECT numbers this week when I talk to nurse S. However, I am just sooooo discouraged that Jax only got 4 degrees of correction after 9 full weeks in his cast. It seems like every story I have read on the ISOP website the kids got WAY better correction than that. Also, 's roommate (for both casts) got 0 degrees correction. It was just a bummer of a day in general. Has anyone else experienced that the first cast didn't correct the COBB very much, but subsequent casts did better? Please let me know your experiences! Thanks so much! Love, Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2011 Report Share Posted November 20, 2011 Hi Jen, In my daughter's first cast we got huge improvement.... In fact so much that i assumed that she would only need 2 or maybe 3 casts at the maximum. Boy was I wrong! Fast forward 3+ years, 9 casts and 2 braces later and we are still bracing. After that initial cast, we have had several casts where there was no change in the Cobb and one occurence in cast that we had a setback and another setback once in the brace. I also know some parents who have had little to no change in the first cast, but did see improvement in subsequent casts. Maybe your child didn't experience a growth spurt over the past few weeks. Time will tell. What i can tell you is not to lose hope.... This is a slow and steady process. It does take time, but it seems to work. Please keep me posted and I will keep you in my thoughts. (BTW- We go for a recheck next month and my fingers are crossed that we may be nearing the "finish line" when it comes to the brace.... We started out with 3 curves, the main one at almost 50 degrees and we have definitely baby-stepped our way to where we are!) Big hugs!- Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III From: Heath <jaheath86@...>Subject: a little discouragedinfantile scoliosis treatment Date: Saturday, November 19, 2011, 8:24 PM Hello all. went for his second cast yesterday at Shriners Philly, and I was, albeit, a little discouraged. His pre-cast standing COBB was 44, and his COBB after cast #1 is still 40. Also, I was originally told that his pre-cast standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51 (using the same original X-ray in which he measured it to be 27 two months ago). THAT is really conflicting and confusing to me. Anyways, 's new RVAD is 23. So ... if his RVAD did, in fact, change from 51 to 23, that's great ... but if it was 27 (as I was originally told) and down to 23, I am discouraged by that as well. I will find out the CORRECT numbers this week when I talk to nurse S. However, I am just sooooo discouraged that Jax only got 4 degrees of correction after 9 full weeks in his cast. It seems like every story I have read on the ISOP website the kids got WAY better correction than that. Also, 's roommate (for both casts) got 0 degrees correction. It was just a bummer of a day in general.Has anyone else experienced that the first cast didn't correct the COBB very much, but subsequent casts did better? Please let me know your experiences! Thanks so much!Love,Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2011 Report Share Posted November 20, 2011 Hello Jen, I'm sorry to hear that you didn't get much improvement after the first cast. Try to stay positive even a little change is good. Our daughter Noelle is in her second cast and we didn't see any change after the first cast so I know exactly what you are going through. If you ever need to talk, please feel free to give us a call. > > Hello all. > went for his second cast yesterday at Shriners Philly, and I was, albeit, a little discouraged. His pre-cast standing COBB was 44, and his COBB after cast #1 is still 40. Also, I was originally told that his pre-cast standing RVAD was 27 ... but yesterday, Dr. C told me that is was originally 51 (using the same original X-ray in which he measured it to be 27 two months ago). THAT is really conflicting and confusing to me. Anyways, 's new RVAD is 23. So ... if his RVAD did, in fact, change from 51 to 23, that's great ... but if it was 27 (as I was originally told) and down to 23, I am discouraged by that as well. I will find out the CORRECT numbers this week when I talk to nurse S. However, I am just sooooo discouraged that Jax only got 4 degrees of correction after 9 full weeks in his cast. It seems like every story I have read on the ISOP website the kids got WAY better correction than that. Also, 's roommate (for both casts) got 0 degrees correction. It was just a bummer of a day in general. > > Has anyone else experienced that the first cast didn't correct the COBB very much, but subsequent casts did better? Please let me know your experiences! Thanks so much! > > Love, > Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2011 Report Share Posted November 29, 2011 Hi Jenn, I havent read all posts yet, but were you able to get to the bottom of the rvad measurement (original & current)? Ive seen children that start out with a good deal of rotation take longer than kiddos with minimal to no rotation. Correcting that darn rotation is KEY in this entire process and if lil s original rvad was 57, it may take several casts to see more improvement of his cobb. At least you know that the cast is holding him where he is and that his spine, muscles & tissues are currently in a more correct position. Fingers & toes crossed that this cast is loosening up that rotation, the muscles & tissues so he will see more improvement in the next cast. Slow and steady wins the race. Hang in there. HRH > Hello all. > went for his second cast yesterday at Shriners Philly, and I > was, albeit, a little discouraged. His pre-cast standing COBB was > 44, and his COBB after cast #1 is still 40. Also, I was originally > told that his pre-cast standing RVAD was 27 ... but yesterday, Dr. C > told me that is was originally 51 (using the same original X-ray in > which he measured it to be 27 two months ago). THAT is really > conflicting and confusing to me. Anyways, 's new RVAD is 23. > So ... if his RVAD did, in fact, change from 51 to 23, that's great > ... but if it was 27 (as I was originally told) and down to 23, I am > discouraged by that as well. I will find out the CORRECT numbers > this week when I talk to nurse S. However, I am just sooooo > discouraged that Jax only got 4 degrees of correction after 9 full > weeks in his cast. It seems like every story I have read on the ISOP > website the kids got WAY better correction than that. Also, > 's roommate (for both casts) got 0 degrees correction. It was > just a bummer of a day in general. > > Has anyone else experienced that the first cast didn't correct the COBB > very much, but subsequent casts did better? Please let me know your > experiences! Thanks so much! > > Love, > Jen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2011 Report Share Posted November 29, 2011 Thats great news ! Baby steps for sure but look at lil Noelle now! Wow, I cant believe she is 4 yrs old! Glad to hear she is on the homestretch. Please always keep us posted. HRH > Hi Jen, > In my daughter's first cast we got huge improvement.... In fact so much > that i assumed that she would only need 2 or maybe 3 casts at the > maximum. Boy was I wrong! Fast forward 3+ years, 9 casts and 2 braces > later and we are still bracing. After that initial cast, we have had > several casts where there was no change in the Cobb and one occurence in > cast that we had a setback and another setback once in the brace. I also > know some parents who have had little to no change in the first cast, but > did see improvement in subsequent casts. Maybe your child didn't > experience a growth spurt over the past few weeks. Time will tell. > What i can tell you is not to lose hope.... This is a slow and steady > process. It does take time, but it seems to work. Please keep me > posted and I will keep you in my thoughts. (BTW- We go for a recheck > next month and my fingers are crossed that we may be nearing the " finish > line " when it comes to the brace.... > We started out with 3 curves, the main one at almost 50 degrees and we > have definitely baby-stepped our way to where we are!) Big hugs! > > - Noelle's mommy, 4 years old > Rochester NY > Casted 8 times for 1 1/2 years > 9 months in brace > Regressed and went into cast 9 > Back in brace at 8 degrees supine, 13 standing! > reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, > suspected Ehler's Danlos III > > > > > From: Heath <jaheath86@...> > Subject: a little discouraged > infantile scoliosis treatment > Date: Saturday, November 19, 2011, 8:24 PM > > > >  > > > > Hello all. > went for his second cast yesterday at Shriners Philly, and I was, > albeit, a little discouraged. His pre-cast standing COBB was 44, and his > COBB after cast #1 is still 40. Also, I was originally told that his > pre-cast standing RVAD was 27 ... but yesterday, Dr. C told me that is was > originally 51 (using the same original X-ray in which he measured it to be > 27 two months ago). THAT is really conflicting and confusing to me. > Anyways, 's new RVAD is 23. So ... if his RVAD did, in fact, change > from 51 to 23, that's great ... but if it was 27 (as I was originally > told) and down to 23, I am discouraged by that as well. I will find out > the CORRECT numbers this week when I talk to nurse S. However, I am just > sooooo discouraged that Jax only got 4 degrees of correction after 9 full > weeks in his cast. It seems like every story I have read on the ISOP > website the kids got WAY better correction than that. Also, 's > roommate (for both casts) got 0 > degrees correction. It was just a bummer of a day in general. > > Has anyone else experienced that the first cast didn't correct the COBB > very much, but subsequent casts did better? Please let me know your > experiences! Thanks so much! > > Love, > Jen > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2011 Report Share Posted November 29, 2011 Hi , That's what I'm hoping!!! No, unfortunately, after almost two weeks I still haven't gotten the original RVAD number ... due to the holiday, vacations, etc. I told my husband that next time ... we ARE NOT LEAVING Shriner's until we have all of our numbers. I agree. If 's original RVAD was 51 degrees, then I think some of my disappointment with be relieved. That will make me feel like we made some progress. I think it's just so hard to read the stories on the ISOP website and see kids going from a COBB 47 to 26 in a single cast. However, I'm sure every child is different! I will DEFINITELY let everyone on here know when I know 's real measurements. Thanks for your response! Love, Jen > > Hi Jenn, > I havent read all posts yet, but were you able to get to the bottom of the > rvad measurement (original & current)? Ive seen children that start out > with a good deal of rotation take longer than kiddos with minimal to no > rotation. Correcting that darn rotation is KEY in this entire process and > if lil s original rvad was 57, it may take several casts to see > more improvement of his cobb. > At least you know that the cast is holding him where he is and that his > spine, muscles & tissues are currently in a more correct position. > Fingers & toes crossed that this cast is loosening up that rotation, the > muscles & tissues so he will see more improvement in the next cast. > Slow and steady wins the race. Hang in there. > HRH > > > Hello all. > > went for his second cast yesterday at Shriners Philly, and I > > was, albeit, a little discouraged. His pre-cast standing COBB was > > 44, and his COBB after cast #1 is still 40. Also, I was originally > > told that his pre-cast standing RVAD was 27 ... but yesterday, Dr. C > > told me that is was originally 51 (using the same original X-ray in > > which he measured it to be 27 two months ago). THAT is really > > conflicting and confusing to me. Anyways, 's new RVAD is 23. > > So ... if his RVAD did, in fact, change from 51 to 23, that's great > > ... but if it was 27 (as I was originally told) and down to 23, I am > > discouraged by that as well. I will find out the CORRECT numbers > > this week when I talk to nurse S. However, I am just sooooo > > discouraged that Jax only got 4 degrees of correction after 9 full > > weeks in his cast. It seems like every story I have read on the ISOP > > website the kids got WAY better correction than that. Also, > > 's roommate (for both casts) got 0 degrees correction. It was > > just a bummer of a day in general. > > > > Has anyone else experienced that the first cast didn't correct the COBB > > very much, but subsequent casts did better? Please let me know your > > experiences! Thanks so much! > > > > Love, > > Jen > > > > > Quote Link to comment Share on other sites More sharing options...
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