RE: Sandi

[Guest guest]

Sandi,

Welcome back to CAST!  We sure missed

you. 

I am sorry to hear about the setbacks, but

am relieved that you are able to continue with casting. 

Olivia had 100 deg. Cobb, 65 deg. rotation

by the time she was 2 and there was no way that casting could have straightened

her out, permanently.  Her spine had been growing in the uncorrect position for

too long and was rigid, and her growth had slowed down.  She missed the window

of time to benefit from Early Treatment.  Although, I knew she would never be

straight, I also knew that casts were the only external treatment/apparatus

that would hold her curves, maintain overall body alignment/shape, and allow her

precious growing time, while we figured out what the best plan of care was….

Can you remind me of exactly where Jacks

curve(s) are? Is his major curve low thoracic or thoracolumbar?

HRH

I

need help from the experienced here...

I need help.

The last cast was terrible for Jack. I suspect he hit a growth spurt

early in the cast and it lifted the anchor at the hips off the pelvis,

allowing his spine to rotate and subsequently curve. But, I'm not

sure.

My understanding of Miss Mehta's study is that the cast guides the

spine in the position it should be growing. I was told that the

longer they are in the cast, the better.

However, it has been our experience that the longer he is in a cast,

the more correction is lost. The only ones we saw the correction hold

were the ones that were on for six weeks. Once we hit the 8-9 week

period, he rebounds back to either the starting point - or in this

case, worse.

Jack's spine is also being called rigid now - they are no longer able

to get him down below 28°/29°. There was talk of a brace last cast,

and we narrowly dodged that bullet and are sticking with casting as

long as possible. But, after being 36° out of cast, he went up to 38°

out of cast, and now 44° out of cast. My gut is SCREAMING " six weeks,

six weeks, six weeks. " We were told to push this one out to 10 weeks

and I'm sick with worry about it.

Does anyone have experience they can relay? Information they've

gotten or understood differently from Miss Mehta's study?

Are we not getting true correction? thinks the casts are moving

him to the 20s, then his spine is naturally bouncing back and it's

just a matter of when we " catch " it, how much regression has been

made. We definitely know that if we stopped casting, he'd be right

back to the 70s again. This is our only option, surgery aside, of

course.

Also, I'd love to hear from others who have casted rigid spines and

for longer periods of time. Is there hope for a true cure still?

I'm anxious to hear how the Birmingham moms are doing - and Max as

well (though I've heard from some of you via email)

Sandi

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

[Guest guest]

Sandi,

Yes, Sophia's last few casts in Chicago had the shoulder straps way above her shoulders (inches from touching her shoulders, up near her ears) and that was how she came out of the OR. Also, they didn't seem to have any plaster in them- very flimsy and not very stable. But it make sense what everyone is saying about the shoulder straps anchoring the cast, if they are done where they are closer to the shoulders, like in the Mehta article pics.

Dr. K does do shoulder straps on some kids, such as Todd.

(, so great to meet you and your family this week! Hope things went well for Todd.). If you have him do the next cast (hopefully at 6-8 weeks), perhaps you can discuss having it done with the shoulder straps?

Please keep us posted and hope you hear back from SLC soon!

Tina

Re: Sandi

I tend to agree, . I think there is something going on thatwe're losing correction and since that's the only visible difference,I can't help but think it must be at least part of the equation.The over-arm straps were always very loose and high, though and didn'tseem to be doing much when we were in Chicago. The last time theyweren't even stable - I could pop them around quite easily and theysat maybe an inch and a half higher than the top of his shoulder. Ithink Tina said Sophia's was the same way that cast.I hope that Dr. D and Angie get back with us soon. She said hopefullythis week.S

[Guest guest]

Sandi,

Yes, Sophia's last few casts in Chicago had the shoulder straps way above her shoulders (inches from touching her shoulders, up near her ears) and that was how she came out of the OR. Also, they didn't seem to have any plaster in them- very flimsy and not very stable. But it make sense what everyone is saying about the shoulder straps anchoring the cast, if they are done where they are closer to the shoulders, like in the Mehta article pics.

Dr. K does do shoulder straps on some kids, such as Todd.

(, so great to meet you and your family this week! Hope things went well for Todd.). If you have him do the next cast (hopefully at 6-8 weeks), perhaps you can discuss having it done with the shoulder straps?

Please keep us posted and hope you hear back from SLC soon!

Tina

Re: Sandi

I tend to agree, . I think there is something going on thatwe're losing correction and since that's the only visible difference,I can't help but think it must be at least part of the equation.The over-arm straps were always very loose and high, though and didn'tseem to be doing much when we were in Chicago. The last time theyweren't even stable - I could pop them around quite easily and theysat maybe an inch and a half higher than the top of his shoulder. Ithink Tina said Sophia's was the same way that cast.I hope that Dr. D and Angie get back with us soon. She said hopefullythis week.S

[Guest guest]

Yes, Tina is right about Dr K's using shoulder straps on Todd's casts. He did the first 2 casts underarm, but subsequently over-shoulder because of a T5 "compensatory" curve which was not correcting along with the "main" curve.

In our experience, Todd's over-shoulder casts have been equally as tight and high under the arms as his under-arm casts. No difference there whatsoever.

For Todd, the over-shoulder casts allow the cast to hold the upper part of the spine straight. I don't believe they make a difference at all in preventing his casts from riding up since the casts are all pushing upward under his armpits so much that they cannot possibly rise up any further! When Todd's casts have lifted the anchor above the pelvis, it has been from his growing taller. That is not only my observation, but what Dr Khoury told us. (The first time it happened, in fact, they thought it would have been the cast shifting rather than Todd's having grown, but it wasn't. Once they'd seen him, they were surprised at how fast he'd grown/outgrown the cast.)

I am not attempting to counter what has been said, just adding some more experience. I can certainly understand how casts treating different curves could need shoulder straps to help hold them down. Each case is so different, it seems, and I just wanted to add this to the discussion--that it could be a growth spurt, not just that the cast shifted upward overall.

, Mommy to Todd

[infantile_scoliosi s] I need help from the

experienced here...

I need help.The last cast was terrible for Jack. I suspect he hit a growth spurtearly in the cast and it lifted the anchor at the hips off the pelvis,allowing his spine to rotate and subsequently curve. But, I'm notsure.My understanding of Miss Mehta's study is that the cast guides thespine in the position it should be growing. I was told that thelonger they are in the cast, the better.However, it has been our experience that the longer he is in a cast,the more correction is lost. The only ones we saw the correction holdwere the ones that were on for six weeks. Once we hit the 8-9 weekperiod, he rebounds back to either the starting point - or in thiscase, worse.Jack's spine is also being called rigid now - they are no longer ableto get him down below 28°/29°. There was talk of a brace last cast,and we narrowly

dodged that bullet and are sticking with casting aslong as possible. But, after being 36° out of cast, he went up to 38°out of cast, and now 44° out of cast. My gut is SCREAMING "six weeks,six weeks, six weeks." We were told to push this one out to 10 weeksand I'm sick with worry about it.Does anyone have experience they can relay? Information they'vegotten or understood differently from Miss Mehta's study?Are we not getting true correction? thinks the casts are movinghim to the 20s, then his spine is naturally bouncing back and it'sjust a matter of when we "catch" it, how much regression has beenmade. We definitely know that if we stopped casting, he'd be rightback to the 70s again. This is our only option, surgery aside, ofcourse.Also, I'd love to hear from others who have casted rigid spines andfor longer periods of time. Is there hope for a true cure still?I'm

anxious to hear how the Birmingham moms are doing - and Max aswell (though I've heard from some of you via email) :)Sandi-- Mom to Madison, Skylar, on, Piper, & - diagnosed withinfantile scoliosis at 10 months with a 70° right thoracic curve.Currently undergoing serial casting.

[Guest guest]

Yes, Tina is right about Dr K's using shoulder straps on Todd's casts. He did the first 2 casts underarm, but subsequently over-shoulder because of a T5 "compensatory" curve which was not correcting along with the "main" curve.

In our experience, Todd's over-shoulder casts have been equally as tight and high under the arms as his under-arm casts. No difference there whatsoever.

For Todd, the over-shoulder casts allow the cast to hold the upper part of the spine straight. I don't believe they make a difference at all in preventing his casts from riding up since the casts are all pushing upward under his armpits so much that they cannot possibly rise up any further! When Todd's casts have lifted the anchor above the pelvis, it has been from his growing taller. That is not only my observation, but what Dr Khoury told us. (The first time it happened, in fact, they thought it would have been the cast shifting rather than Todd's having grown, but it wasn't. Once they'd seen him, they were surprised at how fast he'd grown/outgrown the cast.)

I am not attempting to counter what has been said, just adding some more experience. I can certainly understand how casts treating different curves could need shoulder straps to help hold them down. Each case is so different, it seems, and I just wanted to add this to the discussion--that it could be a growth spurt, not just that the cast shifted upward overall.

, Mommy to Todd

[infantile_scoliosi s] I need help from the

experienced here...

I need help.The last cast was terrible for Jack. I suspect he hit a growth spurtearly in the cast and it lifted the anchor at the hips off the pelvis,allowing his spine to rotate and subsequently curve. But, I'm notsure.My understanding of Miss Mehta's study is that the cast guides thespine in the position it should be growing. I was told that thelonger they are in the cast, the better.However, it has been our experience that the longer he is in a cast,the more correction is lost. The only ones we saw the correction holdwere the ones that were on for six weeks. Once we hit the 8-9 weekperiod, he rebounds back to either the starting point - or in thiscase, worse.Jack's spine is also being called rigid now - they are no longer ableto get him down below 28°/29°. There was talk of a brace last cast,and we narrowly

dodged that bullet and are sticking with casting aslong as possible. But, after being 36° out of cast, he went up to 38°out of cast, and now 44° out of cast. My gut is SCREAMING "six weeks,six weeks, six weeks." We were told to push this one out to 10 weeksand I'm sick with worry about it.Does anyone have experience they can relay? Information they'vegotten or understood differently from Miss Mehta's study?Are we not getting true correction? thinks the casts are movinghim to the 20s, then his spine is naturally bouncing back and it'sjust a matter of when we "catch" it, how much regression has beenmade. We definitely know that if we stopped casting, he'd be rightback to the 70s again. This is our only option, surgery aside, ofcourse.Also, I'd love to hear from others who have casted rigid spines andfor longer periods of time. Is there hope for a true cure still?I'm

anxious to hear how the Birmingham moms are doing - and Max aswell (though I've heard from some of you via email) :)Sandi-- Mom to Madison, Skylar, on, Piper, & - diagnosed withinfantile scoliosis at 10 months with a 70° right thoracic curve.Currently undergoing serial casting.

[Guest guest]

Yes, Tina is right about Dr K's using shoulder straps on Todd's casts. He did the first 2 casts underarm, but subsequently over-shoulder because of a T5 "compensatory" curve which was not correcting along with the "main" curve.

In our experience, Todd's over-shoulder casts have been equally as tight and high under the arms as his under-arm casts. No difference there whatsoever.

For Todd, the over-shoulder casts allow the cast to hold the upper part of the spine straight. I don't believe they make a difference at all in preventing his casts from riding up since the casts are all pushing upward under his armpits so much that they cannot possibly rise up any further! When Todd's casts have lifted the anchor above the pelvis, it has been from his growing taller. That is not only my observation, but what Dr Khoury told us. (The first time it happened, in fact, they thought it would have been the cast shifting rather than Todd's having grown, but it wasn't. Once they'd seen him, they were surprised at how fast he'd grown/outgrown the cast.)

I am not attempting to counter what has been said, just adding some more experience. I can certainly understand how casts treating different curves could need shoulder straps to help hold them down. Each case is so different, it seems, and I just wanted to add this to the discussion--that it could be a growth spurt, not just that the cast shifted upward overall.

, Mommy to Todd

[infantile_scoliosi s] I need help from the

experienced here...

I need help.The last cast was terrible for Jack. I suspect he hit a growth spurtearly in the cast and it lifted the anchor at the hips off the pelvis,allowing his spine to rotate and subsequently curve. But, I'm notsure.My understanding of Miss Mehta's study is that the cast guides thespine in the position it should be growing. I was told that thelonger they are in the cast, the better.However, it has been our experience that the longer he is in a cast,the more correction is lost. The only ones we saw the correction holdwere the ones that were on for six weeks. Once we hit the 8-9 weekperiod, he rebounds back to either the starting point - or in thiscase, worse.Jack's spine is also being called rigid now - they are no longer ableto get him down below 28°/29°. There was talk of a brace last cast,and we narrowly

dodged that bullet and are sticking with casting aslong as possible. But, after being 36° out of cast, he went up to 38°out of cast, and now 44° out of cast. My gut is SCREAMING "six weeks,six weeks, six weeks." We were told to push this one out to 10 weeksand I'm sick with worry about it.Does anyone have experience they can relay? Information they'vegotten or understood differently from Miss Mehta's study?Are we not getting true correction? thinks the casts are movinghim to the 20s, then his spine is naturally bouncing back and it'sjust a matter of when we "catch" it, how much regression has beenmade. We definitely know that if we stopped casting, he'd be rightback to the 70s again. This is our only option, surgery aside, ofcourse.Also, I'd love to hear from others who have casted rigid spines andfor longer periods of time. Is there hope for a true cure still?I'm

anxious to hear how the Birmingham moms are doing - and Max aswell (though I've heard from some of you via email) :)Sandi-- Mom to Madison, Skylar, on, Piper, & - diagnosed withinfantile scoliosis at 10 months with a 70° right thoracic curve.Currently undergoing serial casting.