Re: Re: slender and sturdy phenotype

[Guest guest]

We've definitely got a "slender". At the hospital last ime, they joked that Bex had a case of "skinny-itis" ; )

One benefit- I can still pick him up in the cast! Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sat, November 7, 2009 8:26:15 AMSubject: Re: slender and sturdy phenotype

My Liv has been of slender phenotype since diagnosis. She was a little chubbo, before then. The pioneer says that sturdy children achieve correction more rapidly (while in a growth spurt), and our little slenders take a bit longer.HRH> > > From: NIck Guthe <nickgutheyahoo (DOT) com>> Subject: Re: [infantile_scoliosi s] Over the shoulder cast - UGH!!> To: infantile_scoliosis @yahoogroups. com> Date:

Friday, November 6, 2009, 9:32 PM> > >  > > > > > Hi Jen,>  > We've only done over the shoulder casts. It's my understanding that Mehta prefers over the shoulder for certain types of curves, I think above T-8 or T-9? Hope I got that right...>  > Do you know your numbers in the last few casts? If Bryce is not getting worse, then the casts are at least keeping the curve from progressing- in progressive children, that is still a "win", because without the cast...you get the picture. Still, I would be frustrated with no correction.>  > We just bathe with Bex lying on the kitchen counter, "spa style"....with a plastic bib and a towel over his front, under his back, and a rolled up towel under his neck. We use a cup to rinse, and towel dry before sitting him

up.>  > Bex is really skinny, too, but he eats a lot (small amounts all day) and is growing. He is probably not over 25 pounds out of cast. One of the nurses said to us that "All of the Scoli kids are skinny". I don't think that's true, but I know Bex is skinny, but healthy. Do you do dairy? Use full fat! >  > Chin up, hang in there!>  Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21) > > > > > > > From: Jen Dupler <jen_dupler@ yahoo. com>> To: infantile_scoliosis @yahoogroups. com> Sent: Fri, November 6, 2009 6:53:34 PM> Subject: [infantile_scoliosi s] Over the shoulder cast - UGH!!> >  > > > > > Hi everyone - it has been quite a while since I have posted....although I do get in my email

as often as I can and read messages and updates.>  > Anyway, I need encouragement, hope, ideas....all of the above and more. We just got back from Bryce getting his 5th cast put on and he is not correcting as we all had hoped. I really went into the process with an open-mind... .or at least I thought I did.....but I really thought he would be further along than he is...especially since we had started casting so early on (13 months). The doctor said one of Bryce's curves is high up on his back so he thinks that may be hindering his progress. ... .so Bryce came home with an over-the-shoulder cast. UGH!!!! The doctor we go to hasn't done many of these (at least according to one of the techs that helps with the casting) so we are all just rolling with it right now to see if it does the trick. So...I have a

few questions.>  > > Bathing  - How do you wash hair with an over-the-shoulder cast? We had such a good routine down pat and now I need to learn to re-do everyday things. Keep in mind, Bryce's shoulder straps seem to be really high...the tops touch the bottom of his ears.> Has anyone had success starting in an under-the- arm cast and then switching to an over-the-shoulder and seeing an improvement in correction?> Do you think we should stick with our doc (who we love) or go to a doc more experienced in the over-the-shoulder casts?> Bryce is not gaining weight - he has been about the same weight for a long time (he is 22 months and weighs 25 lbs). Is anyone supplementing milk with anything to help with growth....like a scoop of formula or instant breakfast mix???>

 Take care,> Jen > > > > Pickerington, Ohio> Mommy to Bryce, 22 months> In cast # 5 - casting at Rochester > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Yahoo! Get it Now for Free! at http://downloads. yahoo.com/ ca/internetexplo rer/>

[Guest guest]

is most certainly the slender phenotype. He always has been on the tall and slender side.BUT he eats like a horse! TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: "heather@..." To: infantile_scoliosis Sent: Sat, November 7, 2009 10:26:15 AMSubject: Re: slender and sturdy phenotype

My Liv has been of slender phenotype since diagnosis. She was a little chubbo, before then. The pioneer says that sturdy children achieve correction more rapidly (while in a growth spurt), and our little slenders take a bit longer.

HRH

>

>

> From: NIck Guthe <nickgutheyahoo (DOT) com>

> Subject: Re: [infantile_scoliosi s] Over the shoulder cast - UGH!!

> To: infantile_scoliosis @yahoogroups. com

> Date: Friday, November 6, 2009, 9:32 PM

>

>

> Â

>

>

>

>

> Hi Jen,

> Â

> We've only done over the shoulder casts. It's my understanding that Mehta prefers over the shoulder for certain types of curves, I think above T-8 or T-9? Hope I got that right...

> Â

> Do you know your numbers in the last few casts? If Bryce is not getting worse, then the casts are at least keeping the curve from progressing- in progressive children, that is still a "win", because without the cast...you get the picture. Still, I would be frustrated with no correction.

> Â

> We just bathe with Bex lying on the kitchen counter, "spa style"....with a plastic bib and a towel over his front, under his back, and a rolled up towel under his neck. We use a cup to rinse, and towel dry before sitting him up.

> Â

> Bex is really skinny, too, but he eats a lot (small amounts all day) and is growing. He is probably not over 25 pounds out of cast. One of the nurses said to us that "All of the Scoli kids are skinny". I don't think that's true, but I know Bex is skinny, but healthy. Do you do dairy? Use full fat!

> Â

> Chin up, hang in there!

> Â Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

>

>

>

>

>

>

> From: Jen Dupler <jen_dupler@ yahoo. com>

> To: infantile_scoliosis @yahoogroups. com

> Sent: Fri, November 6, 2009 6:53:34 PM

> Subject: [infantile_scoliosi s] Over the shoulder cast - UGH!!

>

> Â

>

>

>

>

> Hi everyone - it has been quite a while since I have posted....although I do get in my email as often as I can and read messages and updates.

> Â

> Anyway, I need encouragement, hope, ideas....all of the above and more. We just got back from Bryce getting his 5th cast put on and he is not correcting as we all had hoped. I really went into the process with an open-mind... .or at least I thought I did.....but I really thought he would be further along than he is...especially since we had started casting so early on (13 months). The doctor said one of Bryce's curves is high up on his back so he thinks that may be hindering his progress. ... .so Bryce came home with an over-the-shoulder cast. UGH!!!! The doctor we go to hasn't done many of these (at least according to one of the techs that helps with the casting) so we are all just rolling with it right now to see if it does the trick. So...I have a few questions.

> Â

>

> Bathing  - How do you wash hair with an over-the-shoulder cast? We had such a good routine down pat and now I need to learn to re-do everyday things. Keep in mind, Bryce's shoulder straps seem to be really high...the tops touch the bottom of his ears.

> Has anyone had success starting in an under-the- arm cast and then switching to an over-the-shoulder and seeing an improvement in correction?

> Do you think we should stick with our doc (who we love) or go to a doc more experienced in the over-the-shoulder casts?

> Bryce is not gaining weight - he has been about the same weight for a long time (he is 22 months and weighs 25 lbs). Is anyone supplementing milk with anything to help with growth....like a scoop of formula or instant breakfast mix???

> Â Take care,

> Jen

>

>

>

> Pickerington, Ohio

> Mommy to Bryce, 22 months

> In cast #Â 5 - casting at Rochester

>

>

>

>

>

>

>

>

>

>

>

> ____________ _________ _________ _________ _________ _________ _

> The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Yahoo! Get it Now for Free! at http://downloads. yahoo.com/ ca/internetexplo rer/

>

[Guest guest]

Not really sure where Isaiah fits into this. Hes pretty much average. We go for his well baby check on Monday but at his 12 mo check he was pretty much close to 50percentile in weight and a little over in height. They say hes tall but thats average if he around 50%. So i dont know where that puts him...

Subject: Re: Re: slender and sturdy phenotypeTo: infantile_scoliosis Date: Saturday, November 7, 2009, 10:59 AM

is most certainly the slender phenotype. He always has been on the tall and slender side.BUT he eats like a horse!

TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html

From: "heather@infantiles coliosis. org" <heather@infantilesc oliosis.org>To: infantile_scoliosis @yahoogroups. comSent: Sat, November 7, 2009 10:26:15 AMSubject: [infantile_scoliosi s] Re: slender and sturdy phenotype

My Liv has been of slender phenotype since diagnosis. She was a little chubbo, before then. The pioneer says that sturdy children achieve correction more rapidly (while in a growth spurt), and our little slenders take a bit longer.HRH> > > From: NIck Guthe <nickgutheyahoo (DOT) com>> Subject: Re: [infantile_scoliosi s] Over the shoulder cast - UGH!!> To:

infantile_scoliosis @yahoogroups. com> Date: Friday, November 6, 2009, 9:32 PM> > >  > > > > > Hi Jen,>  > We've only done over the shoulder casts. It's my understanding that Mehta prefers over the shoulder for certain types of curves, I think above T-8 or T-9? Hope I got that right...>  > Do you know your numbers in the last few casts? If Bryce is not getting worse, then the casts are at least keeping the curve from progressing- in progressive children, that is still a "win", because without the cast...you get the picture. Still, I would be frustrated with no correction.>  > We just bathe with Bex lying on the kitchen counter, "spa style"....with a plastic bib and a towel over his front, under his back, and a rolled up towel under his neck. We use a

cup to rinse, and towel dry before sitting him up.>  > Bex is really skinny, too, but he eats a lot (small amounts all day) and is growing. He is probably not over 25 pounds out of cast. One of the nurses said to us that "All of the Scoli kids are skinny". I don't think that's true, but I know Bex is skinny, but healthy. Do you do dairy? Use full fat! >  > Chin up, hang in there!>  Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21) > > > > > > > From: Jen Dupler <jen_dupler@ yahoo. com>> To: infantile_scoliosis @yahoogroups. com> Sent: Fri, November 6, 2009 6:53:34 PM> Subject: [infantile_scoliosi s] Over the shoulder cast - UGH!!> >  > > > > > Hi everyone - it has been quite a while since I

have posted....although I do get in my email as often as I can and read messages and updates.>  > Anyway, I need encouragement, hope, ideas....all of the above and more. We just got back from Bryce getting his 5th cast put on and he is not correcting as we all had hoped. I really went into the process with an open-mind... .or at least I thought I did.....but I really thought he would be further along than he is...especially since we had started casting so early on (13 months). The doctor said one of Bryce's curves is high up on his back so he thinks that may be hindering his progress. ... .so Bryce came home with an over-the-shoulder cast. UGH!!!! The doctor we go to hasn't done many of these (at least according to one of the techs that helps with the casting) so we are all just rolling with it right now to see

if it does the trick. So...I have a few questions.>  > > Bathing  - How do you wash hair with an over-the-shoulder cast? We had such a good routine down pat and now I need to learn to re-do everyday things. Keep in mind, Bryce's shoulder straps seem to be really high...the tops touch the bottom of his ears.> Has anyone had success starting in an under-the- arm cast and then switching to an over-the-shoulder and seeing an improvement in correction?> Do you think we should stick with our doc (who we love) or go to a doc more experienced in the over-the-shoulder casts?> Bryce is not gaining weight - he has been about the same weight for a long time (he is 22 months and weighs 25 lbs). Is anyone supplementing milk with anything to help with growth....like a

scoop of formula or instant breakfast mix???>  Take care,> Jen > > > > Pickerington, Ohio> Mommy to Bryce, 22 months> In cast # 5 - casting at Rochester > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Yahoo! Get it Now for Free! at http://downloads. yahoo.com/ ca/internetexplo rer/>

[Guest guest]

Not really sure where Isaiah fits into this. Hes pretty much average. We go for his well baby check on Monday but at his 12 mo check he was pretty much close to 50percentile in weight and a little over in height. They say hes tall but thats average if he around 50%. So i dont know where that puts him...

Subject: Re: Re: slender and sturdy phenotypeTo: infantile_scoliosis Date: Saturday, November 7, 2009, 10:59 AM

is most certainly the slender phenotype. He always has been on the tall and slender side.BUT he eats like a horse!

TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html

From: "heather@infantiles coliosis. org" <heather@infantilesc oliosis.org>To: infantile_scoliosis @yahoogroups. comSent: Sat, November 7, 2009 10:26:15 AMSubject: [infantile_scoliosi s] Re: slender and sturdy phenotype

My Liv has been of slender phenotype since diagnosis. She was a little chubbo, before then. The pioneer says that sturdy children achieve correction more rapidly (while in a growth spurt), and our little slenders take a bit longer.HRH> > > From: NIck Guthe <nickgutheyahoo (DOT) com>> Subject: Re: [infantile_scoliosi s] Over the shoulder cast - UGH!!> To:

infantile_scoliosis @yahoogroups. com> Date: Friday, November 6, 2009, 9:32 PM> > >  > > > > > Hi Jen,>  > We've only done over the shoulder casts. It's my understanding that Mehta prefers over the shoulder for certain types of curves, I think above T-8 or T-9? Hope I got that right...>  > Do you know your numbers in the last few casts? If Bryce is not getting worse, then the casts are at least keeping the curve from progressing- in progressive children, that is still a "win", because without the cast...you get the picture. Still, I would be frustrated with no correction.>  > We just bathe with Bex lying on the kitchen counter, "spa style"....with a plastic bib and a towel over his front, under his back, and a rolled up towel under his neck. We use a

cup to rinse, and towel dry before sitting him up.>  > Bex is really skinny, too, but he eats a lot (small amounts all day) and is growing. He is probably not over 25 pounds out of cast. One of the nurses said to us that "All of the Scoli kids are skinny". I don't think that's true, but I know Bex is skinny, but healthy. Do you do dairy? Use full fat! >  > Chin up, hang in there!>  Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21) > > > > > > > From: Jen Dupler <jen_dupler@ yahoo. com>> To: infantile_scoliosis @yahoogroups. com> Sent: Fri, November 6, 2009 6:53:34 PM> Subject: [infantile_scoliosi s] Over the shoulder cast - UGH!!> >  > > > > > Hi everyone - it has been quite a while since I

have posted....although I do get in my email as often as I can and read messages and updates.>  > Anyway, I need encouragement, hope, ideas....all of the above and more. We just got back from Bryce getting his 5th cast put on and he is not correcting as we all had hoped. I really went into the process with an open-mind... .or at least I thought I did.....but I really thought he would be further along than he is...especially since we had started casting so early on (13 months). The doctor said one of Bryce's curves is high up on his back so he thinks that may be hindering his progress. ... .so Bryce came home with an over-the-shoulder cast. UGH!!!! The doctor we go to hasn't done many of these (at least according to one of the techs that helps with the casting) so we are all just rolling with it right now to see

if it does the trick. So...I have a few questions.>  > > Bathing  - How do you wash hair with an over-the-shoulder cast? We had such a good routine down pat and now I need to learn to re-do everyday things. Keep in mind, Bryce's shoulder straps seem to be really high...the tops touch the bottom of his ears.> Has anyone had success starting in an under-the- arm cast and then switching to an over-the-shoulder and seeing an improvement in correction?> Do you think we should stick with our doc (who we love) or go to a doc more experienced in the over-the-shoulder casts?> Bryce is not gaining weight - he has been about the same weight for a long time (he is 22 months and weighs 25 lbs). Is anyone supplementing milk with anything to help with growth....like a

scoop of formula or instant breakfast mix???>  Take care,> Jen > > > > Pickerington, Ohio> Mommy to Bryce, 22 months> In cast # 5 - casting at Rochester > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Yahoo! Get it Now for Free! at http://downloads. yahoo.com/ ca/internetexplo rer/>

[Guest guest]

Not really sure where Isaiah fits into this. Hes pretty much average. We go for his well baby check on Monday but at his 12 mo check he was pretty much close to 50percentile in weight and a little over in height. They say hes tall but thats average if he around 50%. So i dont know where that puts him...

Subject: Re: Re: slender and sturdy phenotypeTo: infantile_scoliosis Date: Saturday, November 7, 2009, 10:59 AM

is most certainly the slender phenotype. He always has been on the tall and slender side.BUT he eats like a horse!

TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html

From: "heather@infantiles coliosis. org" <heather@infantilesc oliosis.org>To: infantile_scoliosis @yahoogroups. comSent: Sat, November 7, 2009 10:26:15 AMSubject: [infantile_scoliosi s] Re: slender and sturdy phenotype

My Liv has been of slender phenotype since diagnosis. She was a little chubbo, before then. The pioneer says that sturdy children achieve correction more rapidly (while in a growth spurt), and our little slenders take a bit longer.HRH> > > From: NIck Guthe <nickgutheyahoo (DOT) com>> Subject: Re: [infantile_scoliosi s] Over the shoulder cast - UGH!!> To:

infantile_scoliosis @yahoogroups. com> Date: Friday, November 6, 2009, 9:32 PM> > >  > > > > > Hi Jen,>  > We've only done over the shoulder casts. It's my understanding that Mehta prefers over the shoulder for certain types of curves, I think above T-8 or T-9? Hope I got that right...>  > Do you know your numbers in the last few casts? If Bryce is not getting worse, then the casts are at least keeping the curve from progressing- in progressive children, that is still a "win", because without the cast...you get the picture. Still, I would be frustrated with no correction.>  > We just bathe with Bex lying on the kitchen counter, "spa style"....with a plastic bib and a towel over his front, under his back, and a rolled up towel under his neck. We use a

cup to rinse, and towel dry before sitting him up.>  > Bex is really skinny, too, but he eats a lot (small amounts all day) and is growing. He is probably not over 25 pounds out of cast. One of the nurses said to us that "All of the Scoli kids are skinny". I don't think that's true, but I know Bex is skinny, but healthy. Do you do dairy? Use full fat! >  > Chin up, hang in there!>  Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21) > > > > > > > From: Jen Dupler <jen_dupler@ yahoo. com>> To: infantile_scoliosis @yahoogroups. com> Sent: Fri, November 6, 2009 6:53:34 PM> Subject: [infantile_scoliosi s] Over the shoulder cast - UGH!!> >  > > > > > Hi everyone - it has been quite a while since I

have posted....although I do get in my email as often as I can and read messages and updates.>  > Anyway, I need encouragement, hope, ideas....all of the above and more. We just got back from Bryce getting his 5th cast put on and he is not correcting as we all had hoped. I really went into the process with an open-mind... .or at least I thought I did.....but I really thought he would be further along than he is...especially since we had started casting so early on (13 months). The doctor said one of Bryce's curves is high up on his back so he thinks that may be hindering his progress. ... .so Bryce came home with an over-the-shoulder cast. UGH!!!! The doctor we go to hasn't done many of these (at least according to one of the techs that helps with the casting) so we are all just rolling with it right now to see

if it does the trick. So...I have a few questions.>  > > Bathing  - How do you wash hair with an over-the-shoulder cast? We had such a good routine down pat and now I need to learn to re-do everyday things. Keep in mind, Bryce's shoulder straps seem to be really high...the tops touch the bottom of his ears.> Has anyone had success starting in an under-the- arm cast and then switching to an over-the-shoulder and seeing an improvement in correction?> Do you think we should stick with our doc (who we love) or go to a doc more experienced in the over-the-shoulder casts?> Bryce is not gaining weight - he has been about the same weight for a long time (he is 22 months and weighs 25 lbs). Is anyone supplementing milk with anything to help with growth....like a

scoop of formula or instant breakfast mix???>  Take care,> Jen > > > > Pickerington, Ohio> Mommy to Bryce, 22 months> In cast # 5 - casting at Rochester > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Yahoo! Get it Now for Free! at http://downloads. yahoo.com/ ca/internetexplo rer/>

[Guest guest]

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnective tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build

myself) tend to have fewer problems with connective tissues because they aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem. This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnective tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build

myself) tend to have fewer problems with connective tissues because they aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem. This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnective tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build

myself) tend to have fewer problems with connective tissues because they aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem. This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

So what if my son is short and thin? Does this effect his treatment in any way?? I don't think he has connective tissue disorder, but how would I even know?? Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Sat, November 7, 2009 1:02:38 PMSubject: Re: Re: slender and sturdy phenotype

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnecti ve tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me).. Kids who are more sturdy (I'm a sturdy-build myself) tend to have fewer problems with connective tissues because they

aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem. This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right

clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy- wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb- ivil.tripod. com/myfamily/Congenital scoliosis support grouphttp://health. groups.yahoo. com/group/ CongenitalScolio sisSupport/

[Guest guest]

This is where makes no sense...He has some sort of connective tissue disorder but is neither slender or sturdy. He is a chunky monkey and has extremely low muscle tone. His brace has a hole cut out for his belly and he looks like he has a basketball under his shirt...LOL.

Connie

Re: Re: slender and sturdy phenotype

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnective tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build myself) tend to have fewer problems with connective tissues because they aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem.

This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

This is where makes no sense...He has some sort of connective tissue disorder but is neither slender or sturdy. He is a chunky monkey and has extremely low muscle tone. His brace has a hole cut out for his belly and he looks like he has a basketball under his shirt...LOL.

Connie

Re: Re: slender and sturdy phenotype

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnective tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build myself) tend to have fewer problems with connective tissues because they aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem.

This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

This is where makes no sense...He has some sort of connective tissue disorder but is neither slender or sturdy. He is a chunky monkey and has extremely low muscle tone. His brace has a hole cut out for his belly and he looks like he has a basketball under his shirt...LOL.

Connie

Re: Re: slender and sturdy phenotype

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnective tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build myself) tend to have fewer problems with connective tissues because they aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem.

This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

I guess this is just proof that every child is different. My Orthopedist tells me this all the time and I need to start listening. But it's hard NOT to compare your child with others, especially others with the same medical conditions as yours. Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Sat, November 7, 2009 1:27:23 PMSubject: Re: Re: slender and sturdy phenotype

This is where makes no sense...He has some sort of connective tissue disorder but is neither slender or sturdy. He is a chunky monkey and has extremely low muscle tone. His brace has a hole cut out for his belly and he looks like he has a basketball under his shirt...LOL.

Connie Re: [infantile_scoliosi s] Re: slender and sturdy phenotype

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc..). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this.. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnecti ve tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build myself) tend to have fewer problems with connective tissues because they

aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem. This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right

clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy- wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-/ ivil.tripod. com/myfamily/Congenital scoliosis support grouphttp://health/. groups.yahoo. com/group/ CongenitalScolio sisSupport/

[Guest guest]

Joan,<<I guess this is just proof that every child is different. My

Orthopedist tells me this all the time and I need to start

listening. But it's hard NOT to compare your child with others,

especially others with the same medical conditions as yours.>>Exactly. Your child may have the same condition, but EVERY child is different. An even more important reason to make sure your doctors understand this, especially in treating unique conditions like infantile scoliosis.My son, Braydon, is now 14yrs old. He is 2 years behind in bone age and is small/short for his age. However, he is proportionately small/short. He is 4'9" and weighs (finally) 90 pounds. He has congenital scoliosis. We've been told (and I believe this) that being small is actually good in the long run. Less wear-and-tear on his back/body. The heavier he is, the more gravity plays in how unstable his spine is. He also has a condition called VACTERL Association which typically sees very small statured kids/adults. It's fun and educational to compare notes with others, but try not to get

wrapped up in the comparison. Remember that what works for one child may not be the right answer/solution for your child. Remember that if one child sees benefit from 4 casts, don't be disappointed if your child needs 6-8 or more. If your child goes on and needs surgery, you are not a failure. Know that you are doing the best you can with the knowledge you have. This is a great place to learn and share experiences so you don't feel alone on your scoliosis journey.Carmell

[Guest guest]

Our child does not have a connective tissue disorder. I don't want parents with slender or skinny kids with scoli to be scared that this is always, or even usually, the case. I don't know the statistics on that, our boy has a small syrinx and progressive scoli. However, as everyone had noted- each child is unique. Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sat, November 7, 2009 11:02:38 AMSubject: Re: Re: slender and sturdy phenotype

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnecti ve tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build myself) tend to have fewer problems with connective tissues because they

aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem. This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right

clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy- wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb- ivil.tripod. com/myfamily/Congenital scoliosis support grouphttp://health. groups.yahoo. com/group/ CongenitalScolio sisSupport/

[Guest guest]

Every child is different but fitting in to a category would be helpful in our case...Our biggest problem is how different is then everyone else. No one knows what to expect, what to do or where to start. Mysteries are no fun!

Connie

Re: Re: slender and sturdy phenotype

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnecti ve tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build myself) tend to have fewer problems with connective tissues because they aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem.

This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy- wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb- ivil.tripod. com/myfamily/

Congenital scoliosis support group

http://health. groups.yahoo. com/group/ CongenitalScolio sisSupport/

[Guest guest]

Every child is different but fitting in to a category would be helpful in our case...Our biggest problem is how different is then everyone else. No one knows what to expect, what to do or where to start. Mysteries are no fun!

Connie

Re: Re: slender and sturdy phenotype

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnecti ve tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build myself) tend to have fewer problems with connective tissues because they aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem.

This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy- wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb- ivil.tripod. com/myfamily/

Congenital scoliosis support group

http://health. groups.yahoo. com/group/ CongenitalScolio sisSupport/

[Guest guest]

Every child is different but fitting in to a category would be helpful in our case...Our biggest problem is how different is then everyone else. No one knows what to expect, what to do or where to start. Mysteries are no fun!

Connie

Re: Re: slender and sturdy phenotype

The slender kids who have scoliosis tend to be kids who have underlying connective tissue disorders (such as Marfans Syndrome, Ehlo-Danlos, etc.). I'm sure there are no statistics about the percentage of kids with scoliosis and connective tissue issues, but many kids I know of have this. The connective tissues are the ligaments and soft tissues that support the bone structure of the spine. When those connective tissues are weaker for whatever reason (disorder, injury, asymmetric growth spurt) scoliosis can happen. Like said, it usually takes longer for slender kids to correct a scoliosis than sturdy kids because their ligaments/connnecti ve tissues are stretched farther and potentially weaker (remember this is my lay-explanation based on my lay-research, but it makes sense to me). Kids who are more sturdy (I'm a sturdy-build myself) tend to have fewer problems with connective tissues because they aren't stretched so far. Someone mentioned the kids in Miss Mehta's examples are slender and tall. I'd bet most have some underlying connective tissue problem.

This is not an issue most orthopedic surgeons talk about, especially with parents. I believe parents should be as educated in their child's treatment options as possible. Hopefully with technology advancing, educating parents will advance too.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 19, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy- wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb- ivil.tripod. com/myfamily/

Congenital scoliosis support group

http://health. groups.yahoo. com/group/ CongenitalScolio sisSupport/

[Guest guest]

Hi Joan,I agree with what Carmell is saying! Each child is unique and as long as you are doing what you believe is best for your child, you are on the right track.You asked about how to know if your child has a connective tissue disorder, there are tests and you typically see a pediatric geneticist for a diagnosis. I know many on this group saw a geneticist early in their PIS diagnosis. We didn't see one until this past summer. This was done at the suggestion of our casting surgeon, who noticed Keira's 'doughy' skin. We just thought it was the cast causing the skin to 'pucker', but it turns out she most likely has a connective tissue disorder. They believe she has EDS type VI. The funny thing part is that she doesn't have one of the main symptoms of EDS VI, which is very flexible joints but she has all the others. So it just goes to show you

that each child is unique and doesn't fit the mold.Liz, Mom to Keira, 3.5 yrs in 5th cast in SLC Subject: Re: Re: slender and sturdy phenotypeTo: infantile_scoliosis Date: Saturday, November 7, 2009, 8:29 PM

Joan,<<I guess this is just proof that every child is different. My

Orthopedist tells me this all the time and I need to start

listening. But it's hard NOT to compare your child with others,

especially others with the same medical conditions as yours.>>Exactly. Your child may have the same condition, but EVERY child is different. An even more important reason to make sure your doctors understand this, especially in treating unique conditions like infantile scoliosis.My son, Braydon, is now 14yrs old. He is 2 years behind in bone age and is small/short for his age. However, he is proportionately small/short.. He is 4'9" and weighs (finally) 90 pounds. He has congenital scoliosis. We've been told (and I believe this) that being small is actually good in the long run. Less wear-and-tear on his back/body. The heavier he is, the more gravity plays in how unstable his spine is. He also has a condition called VACTERL Association which typically sees very small statured kids/adults. It's fun and educational to compare notes with others, but try not to get

wrapped up in the comparison. Remember that what works for one child may not be the right answer/solution for your child. Remember that if one child sees benefit from 4 casts, don't be disappointed if your child needs 6-8 or more. If your child goes on and needs surgery, you are not a failure. Know that you are doing the best you can with the knowledge you have. This is a great place to learn and share experiences so you don't feel alone on your scoliosis journey.Carmell

[Guest guest]

Hi Joan,I agree with what Carmell is saying! Each child is unique and as long as you are doing what you believe is best for your child, you are on the right track.You asked about how to know if your child has a connective tissue disorder, there are tests and you typically see a pediatric geneticist for a diagnosis. I know many on this group saw a geneticist early in their PIS diagnosis. We didn't see one until this past summer. This was done at the suggestion of our casting surgeon, who noticed Keira's 'doughy' skin. We just thought it was the cast causing the skin to 'pucker', but it turns out she most likely has a connective tissue disorder. They believe she has EDS type VI. The funny thing part is that she doesn't have one of the main symptoms of EDS VI, which is very flexible joints but she has all the others. So it just goes to show you

that each child is unique and doesn't fit the mold.Liz, Mom to Keira, 3.5 yrs in 5th cast in SLC Subject: Re: Re: slender and sturdy phenotypeTo: infantile_scoliosis Date: Saturday, November 7, 2009, 8:29 PM

Joan,<<I guess this is just proof that every child is different. My

Orthopedist tells me this all the time and I need to start

listening. But it's hard NOT to compare your child with others,

especially others with the same medical conditions as yours.>>Exactly. Your child may have the same condition, but EVERY child is different. An even more important reason to make sure your doctors understand this, especially in treating unique conditions like infantile scoliosis.My son, Braydon, is now 14yrs old. He is 2 years behind in bone age and is small/short for his age. However, he is proportionately small/short.. He is 4'9" and weighs (finally) 90 pounds. He has congenital scoliosis. We've been told (and I believe this) that being small is actually good in the long run. Less wear-and-tear on his back/body. The heavier he is, the more gravity plays in how unstable his spine is. He also has a condition called VACTERL Association which typically sees very small statured kids/adults. It's fun and educational to compare notes with others, but try not to get

wrapped up in the comparison. Remember that what works for one child may not be the right answer/solution for your child. Remember that if one child sees benefit from 4 casts, don't be disappointed if your child needs 6-8 or more. If your child goes on and needs surgery, you are not a failure. Know that you are doing the best you can with the knowledge you have. This is a great place to learn and share experiences so you don't feel alone on your scoliosis journey.Carmell

[Guest guest]

Hi Joan,I agree with what Carmell is saying! Each child is unique and as long as you are doing what you believe is best for your child, you are on the right track.You asked about how to know if your child has a connective tissue disorder, there are tests and you typically see a pediatric geneticist for a diagnosis. I know many on this group saw a geneticist early in their PIS diagnosis. We didn't see one until this past summer. This was done at the suggestion of our casting surgeon, who noticed Keira's 'doughy' skin. We just thought it was the cast causing the skin to 'pucker', but it turns out she most likely has a connective tissue disorder. They believe she has EDS type VI. The funny thing part is that she doesn't have one of the main symptoms of EDS VI, which is very flexible joints but she has all the others. So it just goes to show you

that each child is unique and doesn't fit the mold.Liz, Mom to Keira, 3.5 yrs in 5th cast in SLC Subject: Re: Re: slender and sturdy phenotypeTo: infantile_scoliosis Date: Saturday, November 7, 2009, 8:29 PM

Joan,<<I guess this is just proof that every child is different. My

Orthopedist tells me this all the time and I need to start

listening. But it's hard NOT to compare your child with others,

especially others with the same medical conditions as yours.>>Exactly. Your child may have the same condition, but EVERY child is different. An even more important reason to make sure your doctors understand this, especially in treating unique conditions like infantile scoliosis.My son, Braydon, is now 14yrs old. He is 2 years behind in bone age and is small/short for his age. However, he is proportionately small/short.. He is 4'9" and weighs (finally) 90 pounds. He has congenital scoliosis. We've been told (and I believe this) that being small is actually good in the long run. Less wear-and-tear on his back/body. The heavier he is, the more gravity plays in how unstable his spine is. He also has a condition called VACTERL Association which typically sees very small statured kids/adults. It's fun and educational to compare notes with others, but try not to get

wrapped up in the comparison. Remember that what works for one child may not be the right answer/solution for your child. Remember that if one child sees benefit from 4 casts, don't be disappointed if your child needs 6-8 or more. If your child goes on and needs surgery, you are not a failure. Know that you are doing the best you can with the knowledge you have. This is a great place to learn and share experiences so you don't feel alone on your scoliosis journey.Carmell

[Guest guest]

Thanks Liz, we did go to a geneticist in Sept and she found nothing Genetically wrong with Hayden. Thanks for the post. I always wonder if there is something ELSE underlying that they just haven't found yet. I hope not... Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Sat, November 7, 2009 3:40:25 PMSubject: Re: Re: slender and sturdy phenotype

Hi Joan,I agree with what Carmell is saying! Each child is unique and as long as you are doing what you believe is best for your child, you are on the right track.You asked about how to know if your child has a connective tissue disorder, there are tests and you typically see a pediatric geneticist for a diagnosis. I know many on this group saw a geneticist early in their PIS diagnosis. We didn't see one until this past summer. This was done at the suggestion of our casting surgeon, who noticed Keira's 'doughy' skin. We just thought it was the cast causing the skin to 'pucker', but it turns out she most likely has a connective tissue disorder. They believe she has EDS type VI. The funny thing part is that she doesn't have one of the main symptoms of EDS VI, which is very flexible joints but she has all the others. So it just goes to show you that each child is unique and doesn't fit the mold.Liz, Mom to Keira,

3.5 yrs in 5th cast in SLC

From: Carmell Burns <cjbmom23yahoo (DOT) com>Subject: Re: [infantile_scoliosi s] Re: slender and sturdy phenotypeTo: infantile_scoliosis @yahoogroups. comDate: Saturday, November 7, 2009, 8:29 PM

Joan,<<I guess this is just proof that every child is different. My Orthopedist tells me this all the time and I need to start listening. But it's hard NOT to compare your child with others, especially others with the same medical conditions as yours.>>Exactly. Your child may have the same condition, but EVERY child is different. An even more important reason to make sure your doctors understand this, especially in treating unique conditions like infantile scoliosis.My son, Braydon, is now 14yrs old. He is 2 years behind in bone age and is small/short for his age. However, he is proportionately small/short. . He is 4'9" and weighs (finally) 90 pounds. He has congenital scoliosis. We've been told (and I believe this) that being small is actually good in the long run. Less

wear-and-tear on his back/body. The heavier he is, the more gravity plays in how unstable his spine is. He also has a condition called VACTERL Association which typically sees very small statured kids/adults. It's fun and educational to compare notes with others, but try not to get wrapped up in the comparison. Remember that what works for one child may not be the right answer/solution for your child. Remember that if one child sees benefit from 4 casts, don't be disappointed if your child needs 6-8 or more. If your child goes on and needs surgery, you are not a failure. Know that you are doing the best you can with the knowledge you have. This is a great place to learn and share experiences so you don't feel alone on your scoliosis journey.Carmell

[Guest guest]

Both of mine are string beans too...definitely slender phenotypes. Ian has the real loose joints and super soft skin too...I know he's got some sort of connective tissue disorder going on.

Noelle (12-2-01)

Ian (8-15-04)

To: infantile_scoliosis Sent: Sat, November 7, 2009 11:26:15 AMSubject: Re: slender and sturdy phenotype

My Liv has been of slender phenotype since diagnosis. She was a little chubbo, before then. The pioneer says that sturdy children achieve correction more rapidly (while in a growth spurt), and our little slenders take a bit longer.HRH> > > From: NIck Guthe <nickgutheyahoo (DOT) com>> Subject: Re: [infantile_scoliosi s] Over the shoulder cast - UGH!!> To: infantile_scoliosis @yahoogroups. com> Date:

Friday, November 6, 2009, 9:32 PM> > >  > > > > > Hi Jen,>  > We've only done over the shoulder casts. It's my understanding that Mehta prefers over the shoulder for certain types of curves, I think above T-8 or T-9? Hope I got that right...>  > Do you know your numbers in the last few casts? If Bryce is not getting worse, then the casts are at least keeping the curve from progressing- in progressive children, that is still a "win", because without the cast...you get the picture. Still, I would be frustrated with no correction.>  > We just bathe with Bex lying on the kitchen counter, "spa style"....with a plastic bib and a towel over his front, under his back, and a rolled up towel under his neck. We use a cup to rinse, and towel dry before sitting him

up.>  > Bex is really skinny, too, but he eats a lot (small amounts all day) and is growing. He is probably not over 25 pounds out of cast. One of the nurses said to us that "All of the Scoli kids are skinny". I don't think that's true, but I know Bex is skinny, but healthy. Do you do dairy? Use full fat! >  > Chin up, hang in there!>  Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21) > > > > > > > From: Jen Dupler <jen_dupler@ yahoo. com>> To: infantile_scoliosis @yahoogroups. com> Sent: Fri, November 6, 2009 6:53:34 PM> Subject: [infantile_scoliosi s] Over the shoulder cast - UGH!!> >  > > > > > Hi everyone - it has been quite a while since I have posted....although I do get in my email

as often as I can and read messages and updates.>  > Anyway, I need encouragement, hope, ideas....all of the above and more. We just got back from Bryce getting his 5th cast put on and he is not correcting as we all had hoped. I really went into the process with an open-mind... .or at least I thought I did.....but I really thought he would be further along than he is...especially since we had started casting so early on (13 months). The doctor said one of Bryce's curves is high up on his back so he thinks that may be hindering his progress. ... .so Bryce came home with an over-the-shoulder cast. UGH!!!! The doctor we go to hasn't done many of these (at least according to one of the techs that helps with the casting) so we are all just rolling with it right now to see if it does the trick. So...I have a

few questions.>  > > Bathing  - How do you wash hair with an over-the-shoulder cast? We had such a good routine down pat and now I need to learn to re-do everyday things. Keep in mind, Bryce's shoulder straps seem to be really high...the tops touch the bottom of his ears.> Has anyone had success starting in an under-the- arm cast and then switching to an over-the-shoulder and seeing an improvement in correction?> Do you think we should stick with our doc (who we love) or go to a doc more experienced in the over-the-shoulder casts?> Bryce is not gaining weight - he has been about the same weight for a long time (he is 22 months and weighs 25 lbs). Is anyone supplementing milk with anything to help with growth....like a scoop of formula or instant breakfast mix???>

 Take care,> Jen > > > > Pickerington, Ohio> Mommy to Bryce, 22 months> In cast # 5 - casting at Rochester > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Yahoo! Get it Now for Free! at http://downloads. yahoo.com/ ca/internetexplo rer/>

[Guest guest]

Both of mine are string beans too...definitely slender phenotypes. Ian has the real loose joints and super soft skin too...I know he's got some sort of connective tissue disorder going on.

Noelle (12-2-01)

Ian (8-15-04)

To: infantile_scoliosis Sent: Sat, November 7, 2009 11:26:15 AMSubject: Re: slender and sturdy phenotype

My Liv has been of slender phenotype since diagnosis. She was a little chubbo, before then. The pioneer says that sturdy children achieve correction more rapidly (while in a growth spurt), and our little slenders take a bit longer.HRH> > > From: NIck Guthe <nickgutheyahoo (DOT) com>> Subject: Re: [infantile_scoliosi s] Over the shoulder cast - UGH!!> To: infantile_scoliosis @yahoogroups. com> Date:

Friday, November 6, 2009, 9:32 PM> > >  > > > > > Hi Jen,>  > We've only done over the shoulder casts. It's my understanding that Mehta prefers over the shoulder for certain types of curves, I think above T-8 or T-9? Hope I got that right...>  > Do you know your numbers in the last few casts? If Bryce is not getting worse, then the casts are at least keeping the curve from progressing- in progressive children, that is still a "win", because without the cast...you get the picture. Still, I would be frustrated with no correction.>  > We just bathe with Bex lying on the kitchen counter, "spa style"....with a plastic bib and a towel over his front, under his back, and a rolled up towel under his neck. We use a cup to rinse, and towel dry before sitting him

up.>  > Bex is really skinny, too, but he eats a lot (small amounts all day) and is growing. He is probably not over 25 pounds out of cast. One of the nurses said to us that "All of the Scoli kids are skinny". I don't think that's true, but I know Bex is skinny, but healthy. Do you do dairy? Use full fat! >  > Chin up, hang in there!>  Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21) > > > > > > > From: Jen Dupler <jen_dupler@ yahoo. com>> To: infantile_scoliosis @yahoogroups. com> Sent: Fri, November 6, 2009 6:53:34 PM> Subject: [infantile_scoliosi s] Over the shoulder cast - UGH!!> >  > > > > > Hi everyone - it has been quite a while since I have posted....although I do get in my email

as often as I can and read messages and updates.>  > Anyway, I need encouragement, hope, ideas....all of the above and more. We just got back from Bryce getting his 5th cast put on and he is not correcting as we all had hoped. I really went into the process with an open-mind... .or at least I thought I did.....but I really thought he would be further along than he is...especially since we had started casting so early on (13 months). The doctor said one of Bryce's curves is high up on his back so he thinks that may be hindering his progress. ... .so Bryce came home with an over-the-shoulder cast. UGH!!!! The doctor we go to hasn't done many of these (at least according to one of the techs that helps with the casting) so we are all just rolling with it right now to see if it does the trick. So...I have a

few questions.>  > > Bathing  - How do you wash hair with an over-the-shoulder cast? We had such a good routine down pat and now I need to learn to re-do everyday things. Keep in mind, Bryce's shoulder straps seem to be really high...the tops touch the bottom of his ears.> Has anyone had success starting in an under-the- arm cast and then switching to an over-the-shoulder and seeing an improvement in correction?> Do you think we should stick with our doc (who we love) or go to a doc more experienced in the over-the-shoulder casts?> Bryce is not gaining weight - he has been about the same weight for a long time (he is 22 months and weighs 25 lbs). Is anyone supplementing milk with anything to help with growth....like a scoop of formula or instant breakfast mix???>

 Take care,> Jen > > > > Pickerington, Ohio> Mommy to Bryce, 22 months> In cast # 5 - casting at Rochester > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Yahoo! Get it Now for Free! at http://downloads. yahoo.com/ ca/internetexplo rer/>

[Guest guest]

Both of mine are string beans too...definitely slender phenotypes. Ian has the real loose joints and super soft skin too...I know he's got some sort of connective tissue disorder going on.

Noelle (12-2-01)

Ian (8-15-04)

To: infantile_scoliosis Sent: Sat, November 7, 2009 11:26:15 AMSubject: Re: slender and sturdy phenotype

My Liv has been of slender phenotype since diagnosis. She was a little chubbo, before then. The pioneer says that sturdy children achieve correction more rapidly (while in a growth spurt), and our little slenders take a bit longer.HRH> > > From: NIck Guthe <nickgutheyahoo (DOT) com>> Subject: Re: [infantile_scoliosi s] Over the shoulder cast - UGH!!> To: infantile_scoliosis @yahoogroups. com> Date:

Friday, November 6, 2009, 9:32 PM> > >  > > > > > Hi Jen,>  > We've only done over the shoulder casts. It's my understanding that Mehta prefers over the shoulder for certain types of curves, I think above T-8 or T-9? Hope I got that right...>  > Do you know your numbers in the last few casts? If Bryce is not getting worse, then the casts are at least keeping the curve from progressing- in progressive children, that is still a "win", because without the cast...you get the picture. Still, I would be frustrated with no correction.>  > We just bathe with Bex lying on the kitchen counter, "spa style"....with a plastic bib and a towel over his front, under his back, and a rolled up towel under his neck. We use a cup to rinse, and towel dry before sitting him

up.>  > Bex is really skinny, too, but he eats a lot (small amounts all day) and is growing. He is probably not over 25 pounds out of cast. One of the nurses said to us that "All of the Scoli kids are skinny". I don't think that's true, but I know Bex is skinny, but healthy. Do you do dairy? Use full fat! >  > Chin up, hang in there!>  Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21) > > > > > > > From: Jen Dupler <jen_dupler@ yahoo. com>> To: infantile_scoliosis @yahoogroups. com> Sent: Fri, November 6, 2009 6:53:34 PM> Subject: [infantile_scoliosi s] Over the shoulder cast - UGH!!> >  > > > > > Hi everyone - it has been quite a while since I have posted....although I do get in my email

as often as I can and read messages and updates.>  > Anyway, I need encouragement, hope, ideas....all of the above and more. We just got back from Bryce getting his 5th cast put on and he is not correcting as we all had hoped. I really went into the process with an open-mind... .or at least I thought I did.....but I really thought he would be further along than he is...especially since we had started casting so early on (13 months). The doctor said one of Bryce's curves is high up on his back so he thinks that may be hindering his progress. ... .so Bryce came home with an over-the-shoulder cast. UGH!!!! The doctor we go to hasn't done many of these (at least according to one of the techs that helps with the casting) so we are all just rolling with it right now to see if it does the trick. So...I have a

few questions.>  > > Bathing  - How do you wash hair with an over-the-shoulder cast? We had such a good routine down pat and now I need to learn to re-do everyday things. Keep in mind, Bryce's shoulder straps seem to be really high...the tops touch the bottom of his ears.> Has anyone had success starting in an under-the- arm cast and then switching to an over-the-shoulder and seeing an improvement in correction?> Do you think we should stick with our doc (who we love) or go to a doc more experienced in the over-the-shoulder casts?> Bryce is not gaining weight - he has been about the same weight for a long time (he is 22 months and weighs 25 lbs). Is anyone supplementing milk with anything to help with growth....like a scoop of formula or instant breakfast mix???>

 Take care,> Jen > > > > Pickerington, Ohio> Mommy to Bryce, 22 months> In cast # 5 - casting at Rochester > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Yahoo! Get it Now for Free! at http://downloads. yahoo.com/ ca/internetexplo rer/>