help!

[Guest guest]

Jenn

I think on monday im going to go ahead and call my doctor in kansas city and

see about the cast, because her curve is at 50 and i do not want it to get

worse. And after reading a lot of peoples stories and people sending me messages

im really thinking i made the wrong choice with the brace andthat we shoudl have

got the cast. Thanks!

Chelsea

mommy to aubrey 1 year old

>

> Hi welcome to CAST! As everyone has already said Bracing does not hold

> curves in infants and toddlers in progressive cases. I would see about

> switching to casting with a Mehta trained doctor with the correct table.

> Casting is also the only real way to potentially cure the scoliosis and

> avoid surgery all together.

>

> I have to say my son, Cole, absolutely loves his cast! He decorates it with

> us and when they take it off for a switch he actually asks for it back! Last

> time when we left the hospital he actually checked to make sure he had it!

> He lives such a NORMAL toddler life. He is not limited from doing anything

> except bath, swimming and throwing sand. He has never even asked us to take

> it off. I know the idea of a body cast seems overwhelming at first, but I am

> so glad we choice this treatment and our son doesn't even seem to notice.

>

>

> Jenn

> Mommy to Cole, 2 years old, 5th cast from Rochester, 13 degrees out of cast

> down from 47, chiari malformation

>

[Guest guest]

Chelsea,

This is , we see a dr at St. Louis Shriners. You can email me personally with any questions. Catie did an awesome job addressing the negative first impressions with St. Louis for me, as I was at soccer all morning. Our dr was trained by a Metha trained dr in Chicago. They do call it Risser as does Chicago I believe. We have been very happy and any issues/questions we have had have been addressed. Please feel free to email diretly. and JimmyMommy and daddy to Grace, 10, Tryston, 4, Drue, 1, cast #226* out of cast, down from 40*, 15* in cast #2St. Louis Shriners Hospital

From: NIck Guthe <nickguthe@...>Subject: Re: Re: HELP!infantile scoliosis treatment Date: Friday, March 26, 2010, 10:40 PM

Just wanted to add that while casting has a few hard parts, it really does just become normal life for your child- I know a lot of other parents will chime in and agree. The water thing- not being able to do full baths, may be the hardest thing- but our son is FULLY mobile and very happy in his cast. He does everything. I'm trying to keep him from climbing on my desk and doing handstands : )The odor has never been a problem, for us, once we got the diapering down, and his legs adjusted to the weight of the cast within a short time. You can see video of him running around, 24 hours after his first cast, on the lower part of the home page of infantilescoliosis. org (at age 19 months).The hardest part for me is fearing the surgeries every 6 months (and sooner, due to complications) - that is why we will continue to cast as long as we can. It is non-invasive

and a gentle process- it corrects slowly, sort of like braces on teeth.

Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)

From: Chelsea <softballchick105@ hotmail.com>infantile scoliosis treatment @groups. comSent: Fri, March 26, 2010 8:20:02 PMSubject: [infantile_scoliosi s] Re: HELP!

Hi thanks for replying. We are running into the problem that i feel awful as a parent for putting her in the brace and when she cries for over thirty minutes i do take the brace off. we've had the brace for a week now and i let her play with it before she puts it on and the entire time shes wearing it, its nothing but screaming. shes delayed on her walking due to the scoliosis. When she will walk i have no idea. The brace is very top heavy and her little legs just arent strong enough to support all the weight. We are at a total loss of what to do to help her adjust to it what ways to go about making her like having the brace on, or if we shouldcall the doctor and tell him we want the cast. We just have no idea at this point. We want to do whats best for her and what can hold her spine until shes old enough to have the surgery, its just so hard with her just turning one and screaming, and oh so stressful! I have made sure today that she has her

brace on for the amout of time that the doctor wanted, but it was nothing but screaming and tears. i hated having to hear it all day but i knew thats what she needed. and i hope im not the only one that is having the problems of trying to get their kid adjusted to the brace, its just so hard to see her having to wear it and people looking at us like we caused it! UGH! Thank you for your story thought i really appreciate it! -CHelsea> > > From: kerplunkmonkey <softballchick105@

....>> Subject: [infantile_scoliosi s] HELP!> infantile scoliosis treatment @groups. com> Date: Friday, March 26, 2010, 7:45 PM> > > Â > > > > Hi, my name is Chelsea and as of December of 2009 we got told about our daughters scoliosis. She just turned a year old on march 4th and got her brace a couple days later. we have been taking her to the chiropracter since december and they are the ones that told us about her scoliosis. When she was 3-4 months old i asked my doctor what was wrong with her back because her ribs were sticking out more on her left said and she would just say oh its just a muscle mass just work with her to use her other side, well it got worse. With xrays done at childrens mercy

here in kansas she was at a 51 degree curve. Now with the brace on she was at a 34 degree curve. I was just wanting advice from parents if anyone else has the brace and how they got their child used to wearing it or what made you choose to go with casting if you didnt choose the brace! any information will help, as we have no information on anything except what i find on the internet! Thanks -Chelsea>

[Guest guest]

Chelsea,

This is , we see a dr at St. Louis Shriners. You can email me personally with any questions. Catie did an awesome job addressing the negative first impressions with St. Louis for me, as I was at soccer all morning. Our dr was trained by a Metha trained dr in Chicago. They do call it Risser as does Chicago I believe. We have been very happy and any issues/questions we have had have been addressed. Please feel free to email diretly. and JimmyMommy and daddy to Grace, 10, Tryston, 4, Drue, 1, cast #226* out of cast, down from 40*, 15* in cast #2St. Louis Shriners Hospital

From: NIck Guthe <nickguthe@...>Subject: Re: Re: HELP!infantile scoliosis treatment Date: Friday, March 26, 2010, 10:40 PM

Just wanted to add that while casting has a few hard parts, it really does just become normal life for your child- I know a lot of other parents will chime in and agree. The water thing- not being able to do full baths, may be the hardest thing- but our son is FULLY mobile and very happy in his cast. He does everything. I'm trying to keep him from climbing on my desk and doing handstands : )The odor has never been a problem, for us, once we got the diapering down, and his legs adjusted to the weight of the cast within a short time. You can see video of him running around, 24 hours after his first cast, on the lower part of the home page of infantilescoliosis. org (at age 19 months).The hardest part for me is fearing the surgeries every 6 months (and sooner, due to complications) - that is why we will continue to cast as long as we can. It is non-invasive

and a gentle process- it corrects slowly, sort of like braces on teeth.

Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)

From: Chelsea <softballchick105@ hotmail.com>infantile scoliosis treatment @groups. comSent: Fri, March 26, 2010 8:20:02 PMSubject: [infantile_scoliosi s] Re: HELP!

Hi thanks for replying. We are running into the problem that i feel awful as a parent for putting her in the brace and when she cries for over thirty minutes i do take the brace off. we've had the brace for a week now and i let her play with it before she puts it on and the entire time shes wearing it, its nothing but screaming. shes delayed on her walking due to the scoliosis. When she will walk i have no idea. The brace is very top heavy and her little legs just arent strong enough to support all the weight. We are at a total loss of what to do to help her adjust to it what ways to go about making her like having the brace on, or if we shouldcall the doctor and tell him we want the cast. We just have no idea at this point. We want to do whats best for her and what can hold her spine until shes old enough to have the surgery, its just so hard with her just turning one and screaming, and oh so stressful! I have made sure today that she has her

brace on for the amout of time that the doctor wanted, but it was nothing but screaming and tears. i hated having to hear it all day but i knew thats what she needed. and i hope im not the only one that is having the problems of trying to get their kid adjusted to the brace, its just so hard to see her having to wear it and people looking at us like we caused it! UGH! Thank you for your story thought i really appreciate it! -CHelsea> > > From: kerplunkmonkey <softballchick105@

....>> Subject: [infantile_scoliosi s] HELP!> infantile scoliosis treatment @groups. com> Date: Friday, March 26, 2010, 7:45 PM> > > Â > > > > Hi, my name is Chelsea and as of December of 2009 we got told about our daughters scoliosis. She just turned a year old on march 4th and got her brace a couple days later. we have been taking her to the chiropracter since december and they are the ones that told us about her scoliosis. When she was 3-4 months old i asked my doctor what was wrong with her back because her ribs were sticking out more on her left said and she would just say oh its just a muscle mass just work with her to use her other side, well it got worse. With xrays done at childrens mercy

here in kansas she was at a 51 degree curve. Now with the brace on she was at a 34 degree curve. I was just wanting advice from parents if anyone else has the brace and how they got their child used to wearing it or what made you choose to go with casting if you didnt choose the brace! any information will help, as we have no information on anything except what i find on the internet! Thanks -Chelsea>

[Guest guest]

Hi Chelsea,

My daughter Audrey wore a brace for 4 months before getting her first cast. We

decided to go with the cast because her curve continued to get worse in the

brace. You should have an xrays both in and out of the brace, and if the curve

is worse than before, go with the casting. As far as getting used to a brace,

Audrey was able to do much more in the brace than she can in her cast, but we

know it's necessary.

, mom to Audrey, 1st brace, SLC

58 degrees down to 40 in cast

>

> Hi, my name is Chelsea and as of December of 2009 we got told about our

daughters scoliosis. She just turned a year old on march 4th and got her brace a

couple days later. we have been taking her to the chiropracter since december

and they are the ones that told us about her scoliosis. When she was 3-4 months

old i asked my doctor what was wrong with her back because her ribs were

sticking out more on her left said and she would just say oh its just a muscle

mass just work with her to use her other side, well it got worse. With xrays

done at childrens mercy here in kansas she was at a 51 degree curve. Now with

the brace on she was at a 34 degree curve. I was just wanting advice from

parents if anyone else has the brace and how they got their child used to

wearing it or what made you choose to go with casting if you didnt choose the

brace! any information will help, as we have no information on anything except

what i find on the internet! Thanks -Chelsea

>

[Guest guest]

Hi Chelsea,

Welcome to our group. First, the rib hump that you are talking about is a classic sign of infantile scoliosis that is grossly underdiagnosed (in my opinion) as either the left or right sided muscle group being more dominant. Docs usually recommend PT or nothing and tell you that your child will eventually "even out". With PIS that isn't the case, obviously. Chiropractic help and PT may strengthen muscles and help your child feel better, but it doesn't improve the scoliotic deformity itself. I would send your child's most recent x-rays and medical info to one or a few of the docs on our website and get another opinion. Bracing may hold the curve and even give you some correction in the COBB angles, but most docs agree that it will not correct spinal rotation. If that isn't addressed, the curvature will likely regress again. Casting correctly can address spinal rotation, allignment of the ribs and

correction in the curvatures. By reaching out to one of our docs you'll get an insight of true value that will help you make future decisions for your child, whether that be casting or bracing. These docs know most of us travel far distances for our appointments so they will give you a recommendation over the phone free of charge. That's how I started this journey. Please let me know if you have any additional questions and good luck! - Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: kerplunkmonkey <softballchick105@...>Subject: HELP!infantile scoliosis treatment Date: Saturday, March 27, 2010, 1:45 AM

Hi, my name is Chelsea and as of December of 2009 we got told about our daughters scoliosis. She just turned a year old on march 4th and got her brace a couple days later. we have been taking her to the chiropracter since december and they are the ones that told us about her scoliosis. When she was 3-4 months old i asked my doctor what was wrong with her back because her ribs were sticking out more on her left said and she would just say oh its just a muscle mass just work with her to use her other side, well it got worse. With xrays done at childrens mercy here in kansas she was at a 51 degree curve. Now with the brace on she was at a 34 degree curve. I was just wanting advice from parents if anyone else has the brace and how they got their child used to wearing it or what made you choose to go with casting if you didnt choose the brace! any information will help, as we have no information on anything except what i find on the internet! Thanks

-Chelsea

[Guest guest]

, we go to childrens mercy in kansas city,ks and we saw dr.a in ortho.

we do have kalibus brace for aubrey. but after being on thie site and talking

with a bunch of moms im thinking we should have gone with the casting instead.

so today my husband and i are dropping the kids of with grandparents and we are

going to make a solid decision on what were going to do. I dont like talking

about this infront of our kids. we have aubrey which just turned 1 and then

hanna and she will be 3 in july. and she knows theres something wrong with

aubrey so i try not to talk about it infront of her because shes a very worried

2 year old! but i do believe we will most likely be going for the cast so help

hold her better. Thanks for the info. -Chelsea

>

>

> From: kerplunkmonkey <softballchick105@...>

> Subject: HELP!

> infantile scoliosis treatment

> Date: Saturday, March 27, 2010, 1:45 AM

>

>

>  

>

>

>

> Hi, my name is Chelsea and as of December of 2009 we got told about our

daughters scoliosis. She just turned a year old on march 4th and got her brace a

couple days later. we have been taking her to the chiropracter since december

and they are the ones that told us about her scoliosis. When she was 3-4 months

old i asked my doctor what was wrong with her back because her ribs were

sticking out more on her left said and she would just say oh its just a muscle

mass just work with her to use her other side, well it got worse. With xrays

done at childrens mercy here in kansas she was at a 51 degree curve. Now with

the brace on she was at a 34 degree curve. I was just wanting advice from

parents if anyone else has the brace and how they got their child used to

wearing it or what made you choose to go with casting if you didnt choose the

brace! any information will help, as we have no information on anything except

what i find on the internet! Thanks -Chelsea

>

[Guest guest]

Good luck with your decision. But just know that casting isn't as bad as you would think. I was dreading it and so anxious about it, but my son actually likes his cast and NEVER asks to take it off. It's almost a part of him and he says," it is making me better mommy". If you or your husband have any questions or doubts, please feel free to ask any question no matter what it is. Someone on here will likely have the answer. Let us know what you decide. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: Chelsea <softballchick105@...>infantile scoliosis treatment Sent: Sun, March 28, 2010 9:14:10 AMSubject: Re: HELP!

, we go to childrens mercy in kansas city,ks and we saw dr.a in ortho. we do have kalibus brace for aubrey. but after being on thie site and talking with a bunch of moms im thinking we should have gone with the casting instead. so today my husband and i are dropping the kids of with grandparents and we are going to make a solid decision on what were going to do. I dont like talking about this infront of our kids. we have aubrey which just turned 1 and then hanna and she will be 3 in july. and she knows theres something wrong with aubrey so i try not to talk about it infront of her because shes a very worried 2 year old! but i do believe we will most likely be going for the cast so help hold her better. Thanks for the info. -Chelsea> > > From: kerplunkmonkey <softballchick105@ ...>> Subject: [infantile_scoliosi s] HELP!> infantile scoliosis treatment @groups. com> Date: Saturday, March 27, 2010, 1:45 AM> > > Â > > > > Hi, my name is Chelsea and as of December of 2009 we got told about our daughters scoliosis. She just turned a year old on march 4th and got her brace a couple days later. we have been taking her to the chiropracter since december and they are the ones that told us about her scoliosis. When she was 3-4 months old i asked my doctor what was wrong with her back because her ribs were sticking out more on her left said and she would just say oh its just a muscle mass just work with her to use her

other side, well it got worse. With xrays done at childrens mercy here in kansas she was at a 51 degree curve. Now with the brace on she was at a 34 degree curve. I was just wanting advice from parents if anyone else has the brace and how they got their child used to wearing it or what made you choose to go with casting if you didnt choose the brace! any information will help, as we have no information on anything except what i find on the internet! Thanks -Chelsea>

[Guest guest]

Chelsea,I don't want to scare you or anything but that curve is awfully high to be treating with a brace but a lot of doctors don't know how to treat and start with a brace. My daughter was also put in a brace when we found out she had scoli and she was in the 40s. The braces that were made for her though were not correcting her at all and so I was referred to our current doc for casting. Had the original doc not known our current doc, I don't know what would've happened. By the time she was casted, (5 months after being diagnosed) she was in the low 70s. As for wearing the brace or the cast, she will adjust and it will just become a way of life for her. I know it doesn't seem like it, but she will adjust. The problem

for me with the brace is that I would feel bad when she was sweating and would take it off and with the cast, there is not a choice. Where is your child being treated? Patty, mom of Isabella, 2 years old, in 4th cast (Rochester) & mom to & EvanFrom: kerplunkmonkey <softballchick105@...>infantile scoliosis treatment Sent: Fri, March 26, 2010 9:45:31 PMSubject: HELP!

Hi, my name is Chelsea and as of December of 2009 we got told about our daughters scoliosis. She just turned a year old on march 4th and got her brace a couple days later. we have been taking her to the chiropracter since december and they are the ones that told us about her scoliosis. When she was 3-4 months old i asked my doctor what was wrong with her back because her ribs were sticking out more on her left said and she would just say oh its just a muscle mass just work with her to use her other side, well it got worse. With xrays done at childrens mercy here in kansas she was at a 51 degree curve. Now with the brace on she was at a 34 degree curve. I was just wanting advice from parents if anyone else has the brace and how they got their child used to wearing it or what made you choose to go with casting if you didnt choose the brace! any information will help, as we have no information on anything except what i find on the internet! Thanks

-Chelsea

[Guest guest]

Patty, yeah im very worried about it. its like her spine is in her should

blades! I do have a call into our doctor to talk about the casting so im just

waiting on a call back!

Chelsea

>

> Chelsea,

> I don't want to scare you or anything but that curve is awfully high to be

treating with a brace but a lot of doctors don't know how to treat and start

with a brace. My daughter was also put in a brace when we found out she had

scoli and she was in the 40s. The braces that were made for her though were not

correcting her at all and so I was referred to our current doc for casting. Had

the original doc not known our current doc, I don't know what would've happened.

By the time she was casted, (5 months after being diagnosed) she was in the low

70s. As for wearing the brace or the cast, she will adjust and it will just

become a way of life for her. I know it doesn't seem like it, but she will

adjust. The problem for me with the brace is that I would feel bad when she was

sweating and would take it off and with the cast, there is not a choice. Where

is your child being treated?

> Patty, mom of Isabella, 2 years old, in 4th cast (Rochester) & mom to &

Evan

>

>

>

>

> ________________________________

> From: kerplunkmonkey <softballchick105@...>

> infantile scoliosis treatment

> Sent: Fri, March 26, 2010 9:45:31 PM

> Subject: HELP!

>

>

> Hi, my name is Chelsea and as of December of 2009 we got told about our

daughters scoliosis. She just turned a year old on march 4th and got her brace a

couple days later. we have been taking her to the chiropracter since december

and they are the ones that told us about her scoliosis. When she was 3-4 months

old i asked my doctor what was wrong with her back because her ribs were

sticking out more on her left said and she would just say oh its just a muscle

mass just work with her to use her other side, well it got worse. With xrays

done at childrens mercy here in kansas she was at a 51 degree curve. Now with

the brace on she was at a 34 degree curve. I was just wanting advice from

parents if anyone else has the brace and how they got their child used to

wearing it or what made you choose to go with casting if you didnt choose the

brace! any information will help, as we have no information on anything except

what i find on the internet! Thanks -Chelsea

>

[Guest guest]

Chelsea, that rib hump you see is from the rotation of the spine, this is what casting will correct first and foremost. My son had a 62 degree curve with a severe rib hump and after 4 casts the rib hump is gone. Scoliosis is a 3 dimensional disease and needs to be treated 3 dimensionally, which a brace cannot do. Keep us posted. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: Chelsea <softballchick105@...>infantile scoliosis treatment Sent: Mon, March 29, 2010 9:44:57 AMSubject: Re: HELP!

Patty, yeah im very worried about it. its like her spine is in her should blades! I do have a call into our doctor to talk about the casting so im just waiting on a call back!Chelsea>> Chelsea,> I don't want to scare you or anything but that curve is awfully high to be treating with a brace but a lot of doctors don't know how to treat and start with a brace. My daughter was also put in a brace when we found out she had scoli and she was in the 40s. The braces that were made for her though were not correcting her at all and so I was referred to our current doc for casting. Had the original doc not known our current doc, I don't know what would've happened. By the time she was casted, (5 months

after being diagnosed) she was in the low 70s. As for wearing the brace or the cast, she will adjust and it will just become a way of life for her. I know it doesn't seem like it, but she will adjust. The problem for me with the brace is that I would feel bad when she was sweating and would take it off and with the cast, there is not a choice. Where is your child being treated?> Patty, mom of Isabella, 2 years old, in 4th cast (Rochester) & mom to & Evan> > > > > ____________ _________ _________ __> From: kerplunkmonkey <softballchick105@ ...>> infantile scoliosis treatment @groups. com> Sent: Fri, March 26, 2010 9:45:31 PM> Subject: [infantile_scoliosi s] HELP!> > > Hi, my name is Chelsea and as of December

of 2009 we got told about our daughters scoliosis. She just turned a year old on march 4th and got her brace a couple days later. we have been taking her to the chiropracter since december and they are the ones that told us about her scoliosis. When she was 3-4 months old i asked my doctor what was wrong with her back because her ribs were sticking out more on her left said and she would just say oh its just a muscle mass just work with her to use her other side, well it got worse. With xrays done at childrens mercy here in kansas she was at a 51 degree curve. Now with the brace on she was at a 34 degree curve. I was just wanting advice from parents if anyone else has the brace and how they got their child used to wearing it or what made you choose to go with casting if you didnt choose the brace! any information will help, as we have no information on anything except what i find on the internet! Thanks

-Chelsea>

[Guest guest]

Chelsea,

Just jumping in here but i was almost sure that Childrens Mercy in KC are doing casting and i think said they are getting Mehta training this year. Hopefully will see this and correct me if im wrong. I know there are parents on here that go there for casting. I live in KS so i tend to notice when talk about Childrens Mercy is brought up. If i were you i would DEFINATELY go with casting. My son was casted at 13 mos old and its like his second skin. He learned to walk in it and everything. Hes getting his 4th cast April 9th. Its a small adjustment period and then its life as usual minus bathing!

Good Luck and keep us posted. BTW where in KC do you live? I used to live in Overland Park, ks but live in Hutchinson, KS now.

From: Chelsea <softballchick105@...>Subject: Re: HELP!infantile scoliosis treatment Date: Sunday, March 28, 2010, 9:14 AM

, we go to childrens mercy in kansas city,ks and we saw dr.a in ortho. we do have kalibus brace for aubrey. but after being on thie site and talking with a bunch of moms im thinking we should have gone with the casting instead. so today my husband and i are dropping the kids of with grandparents and we are going to make a solid decision on what were going to do. I dont like talking about this infront of our kids. we have aubrey which just turned 1 and then hanna and she will be 3 in july. and she knows theres something wrong with aubrey so i try not to talk about it infront of her because shes a very worried 2 year old! but i do believe we will most likely be going for the cast so help hold her better. Thanks for the info. -Chelsea> > > From: kerplunkmonkey <softballchick105@ ...>> Subject: [infantile_scoliosi s] HELP!> infantile scoliosis treatment @groups. com> Date: Saturday, March 27, 2010, 1:45 AM> > > Â > > > > Hi, my name is Chelsea and as of December of 2009 we got told about our daughters scoliosis. She just turned a year old on march 4th and got her brace a couple days later. we have been taking her to the chiropracter since december and they are the ones that told us about her scoliosis. When she was 3-4 months old i asked my doctor what was wrong with her back because her ribs were sticking out more on her left said and she

would just say oh its just a muscle mass just work with her to use her other side, well it got worse. With xrays done at childrens mercy here in kansas she was at a 51 degree curve. Now with the brace on she was at a 34 degree curve. I was just wanting advice from parents if anyone else has the brace and how they got their child used to wearing it or what made you choose to go with casting if you didnt choose the brace! any information will help, as we have no information on anything except what i find on the internet! Thanks -Chelsea>

[Guest guest]

, Thank you so much for that info. i have a call into my doctor but they havent called me back yet. so im going to try again tomorrow. I live in Emporia,ks we travel to kansas city for her appointments!Chelseamother of aubrey age 1, 2 weeks in brace

infantile scoliosis treatment From: missikay10@...Date: Mon, 29 Mar 2010 12:23:04 -0700Subject: Re: Re: HELP!

Chelsea,

Just jumping in here but i was almost sure that Childrens Mercy in KC are doing casting and i think said they are getting Mehta training this year. Hopefully will see this and correct me if im wrong. I know there are parents on here that go there for casting. I live in KS so i tend to notice when talk about Childrens Mercy is brought up. If i were you i would DEFINATELY go with casting. My son was casted at 13 mos old and its like his second skin. He learned to walk in it and everything. Hes getting his 4th cast April 9th. Its a small adjustment period and then its life as usual minus bathing!

Good Luck and keep us posted. BTW where in KC do you live? I used to live in Overland Park, ks but live in Hutchinson, KS now.

From: Chelsea <softballchick105hotmail>Subject: Re: HELP!infantile scoliosis treatment Date: Sunday, March 28, 2010, 9:14 AM

, we go to childrens mercy in kansas city,ks and we saw dr.a in ortho. we do have kalibus brace for aubrey. but after being on thie site and talking with a bunch of moms im thinking we should have gone with the casting instead. so today my husband and i are dropping the kids of with grandparents and we are going to make a solid decision on what were going to do. I dont like talking about this infront of our kids. we have aubrey which just turned 1 and then hanna and she will be 3 in july. and she knows theres something wrong with aubrey so i try not to talk about it infront of her because shes a very worried 2 year old! but i do believe we will most likely be going for the cast so help hold her better. Thanks for the info. -Chelsea> > > From: kerplunkmonkey <softballchick105@ ...>> Subject: [infantile_scoliosi s] HELP!> infantile scoliosis treatment @groups. com> Date: Saturday, March 27, 2010, 1:45 AM> > > Â > > > > Hi, my name is Chelsea and as of December of 2009 we got told about our daughters scoliosis. She just turned a year old on march 4th and got her brace a couple days later. we have been taking her to the chiropracter since december and they are the ones that told us about her scoliosis. When she was 3-4 months old i asked my doctor what was wrong with her back because her ribs were sticking out more on her left said and she would just say oh its just a muscle mass just work with her to use her other side, well it got worse. With xrays done at childrens mercy here in kansas she was at a 51 degree curve. Now with the brace on she was at a 34 degree curve. I was just wanting advice from parents if anyone else has the brace and how they got their child used to wearing it or what made you choose to go with casting if you didnt choose the brace! any information will help, as we have no information on anything except what i find on the internet! Thanks -Chelsea>

Hotmail: Powerful Free email with security by Microsoft. Get it now.

[Guest guest]

Chelsea,

Good luck and let me know if you need anything.... Noelle was diagnosed at 11 months and is 3 now. I'd be happy to chat on the phone if you'd like.... Just send me a private e-mail with your number. Please keep me posted...- Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: Chelsea <softballchick105@...>Subject: Re: HELP!infantile scoliosis treatment Date: Sunday, March 28, 2010, 2:14 PM

, we go to childrens mercy in kansas city,ks and we saw dr.a in ortho. we do have kalibus brace for aubrey. but after being on thie site and talking with a bunch of moms im thinking we should have gone with the casting instead. so today my husband and i are dropping the kids of with grandparents and we are going to make a solid decision on what were going to do. I dont like talking about this infront of our kids. we have aubrey which just turned 1 and then hanna and she will be 3 in july. and she knows theres something wrong with aubrey so i try not to talk about it infront of her because shes a very worried 2 year old! but i do believe we will most likely be going for the cast so help hold her better. Thanks for the info. -Chelsea> > > From: kerplunkmonkey <softballchick105@ ...>> Subject: [infantile_scoliosi s] HELP!> infantile scoliosis treatment @groups. com> Date: Saturday, March 27, 2010, 1:45 AM> > > Â > > > > Hi, my name is Chelsea and as of December of 2009 we got told about our daughters scoliosis. She just turned a year old on march 4th and got her brace a couple days later. we have been taking her to the chiropracter since december and they are the ones that told us about her scoliosis. When she was 3-4 months old i asked my doctor what was wrong with her back because her ribs were sticking out more on her left said and she

would just say oh its just a muscle mass just work with her to use her other side, well it got worse. With xrays done at childrens mercy here in kansas she was at a 51 degree curve. Now with the brace on she was at a 34 degree curve. I was just wanting advice from parents if anyone else has the brace and how they got their child used to wearing it or what made you choose to go with casting if you didnt choose the brace! any information will help, as we have no information on anything except what i find on the internet! Thanks -Chelsea>

[Guest guest]

Chelsea,

Good luck and let me know if you need anything.... Noelle was diagnosed at 11 months and is 3 now. I'd be happy to chat on the phone if you'd like.... Just send me a private e-mail with your number. Please keep me posted...- Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: Chelsea <softballchick105@...>Subject: Re: HELP!infantile scoliosis treatment Date: Sunday, March 28, 2010, 2:14 PM

, we go to childrens mercy in kansas city,ks and we saw dr.a in ortho. we do have kalibus brace for aubrey. but after being on thie site and talking with a bunch of moms im thinking we should have gone with the casting instead. so today my husband and i are dropping the kids of with grandparents and we are going to make a solid decision on what were going to do. I dont like talking about this infront of our kids. we have aubrey which just turned 1 and then hanna and she will be 3 in july. and she knows theres something wrong with aubrey so i try not to talk about it infront of her because shes a very worried 2 year old! but i do believe we will most likely be going for the cast so help hold her better. Thanks for the info. -Chelsea> > > From: kerplunkmonkey <softballchick105@ ...>> Subject: [infantile_scoliosi s] HELP!> infantile scoliosis treatment @groups. com> Date: Saturday, March 27, 2010, 1:45 AM> > > Â > > > > Hi, my name is Chelsea and as of December of 2009 we got told about our daughters scoliosis. She just turned a year old on march 4th and got her brace a couple days later. we have been taking her to the chiropracter since december and they are the ones that told us about her scoliosis. When she was 3-4 months old i asked my doctor what was wrong with her back because her ribs were sticking out more on her left said and she

would just say oh its just a muscle mass just work with her to use her other side, well it got worse. With xrays done at childrens mercy here in kansas she was at a 51 degree curve. Now with the brace on she was at a 34 degree curve. I was just wanting advice from parents if anyone else has the brace and how they got their child used to wearing it or what made you choose to go with casting if you didnt choose the brace! any information will help, as we have no information on anything except what i find on the internet! Thanks -Chelsea>

[Guest guest]

The Daily Strength website has some support groups, try there. http://www.dailystrength.org. I joined one after my Mom was diagnosed with Pancreatic Cancer two years ago.

 

Hope it helps!

Jenn

On Thu, Mar 31, 2011 at 1:49 PM, Genie Bottle <bottlegenie56@...> wrote:

 

My father has cancer of the pancreas. Do anyone know any sites that will seriously communicate with me? I know this is unrelated to our autsim group. I usually write about my four year old. I recently wrote about possibly putting bracing on. I tried to pick a site on my own. It was a bust! It was chat and not even about the right subject. I am sorry I was just hoping someone out there could help. I am stressed and really need to talk to someone.

[Guest guest]

I just wanted to say that I used this site (daily strength) after the loss of my mom and it is a really good one. So sorry to hear about your father, that's got to be so hard. Best wishes for you!!! Re: Help!

The Daily Strength website has some support groups, try there. http://www.dailystrength.org. I joined one after my Mom was diagnosed with Pancreatic Cancer two years ago.

Hope it helps!

Jenn

On Thu, Mar 31, 2011 at 1:49 PM, Genie Bottle <bottlegenie56@...> wrote:

My father has cancer of the pancreas. Do anyone know any sites that will seriously communicate with me? I know this is unrelated to our autsim group. I usually write about my four year old. I recently wrote about possibly putting bracing on. I tried to pick a site on my own. It was a bust! It was chat and not even about the right subject. I am sorry I was just hoping someone out there could help. I am stressed and really need to talk to someone.

[Guest guest]

My son, 16yo, refuses to comb his hair.  The rule is that it either

gets combed, or it has to be kept short.  He chooses to have it

short.  He also has to wash it every day.  His mother doesn't really

approve, but it is something she is prepared to live with.  His

school does not allow facial hair, so he reluctantly shaves every

few days.

As for his language - if he is anything like my son and his friends,

that was exactly what he would have said to one of his friends in

the same situation.  We have banned the F word in our house.  There

are times when rules simply have to be set, with no argument entered

into.  Ben can, and will, argue for hours about technicalities and

exceptions, but what's the point for either of us when the

conclusion will still be the same?  Tolerance for perceived

stupidity at that age is very low - which is quite surprising when

you consider some of the behaviour of males of that age.  Not long

ago Ben was ranting about not wanting to go to church because it was

filled with hypocrites who thought they knew everything.  My reply

was "well, you'll fit in well then" and I left.  He hasn't brought

up the subject since.

At 16 a boy does sometimes respond better to a man - but not always

if that man is his father or grandfather.  Sometimes 16 yo boys just

insist on acting like they are 2 years old, and at those times it is

best just to walk away and hope it is over soon.

On 1/04/2011 1:34 AM, MaggieJ wrote:

 

My grandson Whom I have custody of is on the spectrum

with ASD I have never seen a problem quite like mine. It

is a 2 part problem. I will start with his hair. He likes

what he calls the bedhead look.

Last year his hair was very long and he refused to comb it

, so he developed a large knot in the back of his head. We

had to go to the barber and have it cut short. He was very

upset about this. Now it is growing back in and the

bedhead look is back. I have tried to explain, that the

hair needs to be combed and then tasseled if you want it

that way. He says it makes no sense and is a waste of

time. It looks sloppy and so does he. He is 16 and also

refuses to shave. No problem if he wanted a neat beard,

but it is growing in spotty, with lots of neck hair.

Nothing I say will convince him to keep his hair or beard

neater.

My other problem is I was using my daughter's computer

this morning. I made a comment, I needed my reading

glasses because the monitor was much smaller than mine.

His response was referring to me I am a stupid F---ing

moron. Her monitor is normal mine is larger.

I am at my wits end to the point I am thinking of looking

for a home. I don't believe he would talk that way to a

man. I don't deserve it and can not stand being spoken to

that way much longer. I walked upstairs and didn't say

anything. I know it would have escalated into a big fight

if I spoke. Any help would be greatly appreciated. Peggy

[Guest guest]

Dear Peggy,

I'm sorry he's being so difficult. Being straight with him seems the best to me. How would it be to tell him that his behavior and his care of himself has to improve or he will need to go live in a group home, where he'll probably even have to clean the toilets. And mean it. Life in one of them won't be fun for him with his attitude.

His abusiveness isn't good for You or for him. If You're very attached to him, this would be hard, and yet his getting away with it certainly isn't fitting him for a happy life (including for those around him). A group home just might straighten him out; not because they particularly know what to do but because home is 1000 times better.

I wish I had a better or a more palatable suggestion for You.

I'd also turn to God for help if that works for You. It does for me and us, and that's why I'm mentioning it.

Sincerely,

Francine

Speak with Him Thou for He hearest.

Spirit with Spirit can speak.

Closer is Love than breathing,

Nearer than hands and feet.

(with appreciation for Tennyson)

Re: HELP!

My son, 16yo, refuses to comb his hair. The rule is that it either gets combed, or it has to be kept short. He chooses to have it short. He also has to wash it every day. His mother doesn't really approve, but it is something she is prepared to live with. His school does not allow facial hair, so he reluctantly shaves every few days.

As for his language - if he is anything like my son and his friends, that was exactly what he would have said to one of his friends in the same situation. We have banned the F word in our house. There are times when rules simply have to be set, with no argument entered into. Ben can, and will, argue for hours about technicalities and exceptions, but what's the point for either of us when the conclusion will still be the same? Tolerance for perceived stupidity at that age is very low - which is quite surprising when you consider some of the behaviour of males of that age. Not long ago Ben was ranting about not wanting to go to church because it was filled with hypocrites who thought they knew everything. My reply was "well, you'll fit in well then" and I left. He hasn't brought up the subject since.

At 16 a boy does sometimes respond better to a man - but not always if that man is his father or grandfather. Sometimes 16 yo boys just insist on acting like they are 2 years old, and at those times it is best just to walk away and hope it is over soon.

On 1/04/2011 1:34 AM, MaggieJ wrote:

My grandson Whom I have custody of is on the spectrum with ASD I have never seen a problem quite like mine. It is a 2 part problem. I will start with his hair. He likes what he calls the bedhead look.

Last year his hair was very long and he refused to comb it , so he developed a large knot in the back of his head. We had to go to the barber and have it cut short. He was very upset about this. Now it is growing back in and the bedhead look is back. I have tried to explain, that the hair needs to be combed and then tasseled if you want it that way. He says it makes no sense and is a waste of time. It looks sloppy and so does he. He is 16 and also refuses to shave. No problem if he wanted a neat beard, but it is growing in spotty, with lots of neck hair. Nothing I say will convince him to keep his hair or beard neater.

My other problem is I was using my daughter's computer this morning. I made a comment, I needed my reading glasses because the monitor was much smaller than mine. His response was referring to me I am a stupid F---ing moron. Her monitor is normal mine is larger.

I am at my wits end to the point I am thinking of looking for a home. I don't believe he would talk that way to a man. I don't deserve it and can not stand being spoken to that way much longer. I walked upstairs and didn't say anything. I know it would have escalated into a big fight if I spoke. Any help would be greatly appreciated. Peggy

[Guest guest]

Peggy,

 

First off, your grandson may have extreme sensitivies around his head and face and to touching those areas may trigger erratic nerves that can be physically painful to him.  He may not want to be perceived as weird, so may be masking his discomfort with having an aloof attitude about his appearence.  Please used compassionate understanding that kids with spectrum issues many time have very real reasons to do the things they do even if they seem absurd to us.

 

Secondly, if you are thinking of throwing in the towel just because of your grandson spoke to you inappropriately, maybe you should try and get some counsling from professionals who can help you.  I recommend Stillman (williamstillman.com). 

An adolecent with spectrum issues tend to try to evoke a rection from those they love becasue something is wrong in their world.  Have you ever heard the old saying, " You always hurt the ones you love? "  

He is probably lashing out at you because he is scared, uncomfortable or angry (at not being typical) and lacks the " proper " ability to explain himself.  Behavior issues with these kids get really, really bad at times, so if your grandson is using words as a wepon - be grateful.

 

Debra 

On Thu, Mar 31, 2011 at 10:34 AM, MaggieJ <Ma88ieMay@...> wrote:

 

My grandson Whom I have custody of is on the spectrum with ASD I have never seen a problem quite like mine. It is a 2 part problem. I will start with his hair. He likes what he calls the bedhead look.Last year his hair was very long and he refused to comb it , so he developed a large knot in the back of his head. We had to go to the barber and have it cut short. He was very upset about this. Now it is growing back in and the bedhead look is back. I have tried to explain, that the hair needs to be combed and then tasseled if you want it that way. He says it makes no sense and is a waste of time. It looks sloppy and so does he. He is 16 and also refuses to shave. No problem if he wanted a neat beard, but it is growing in spotty, with lots of neck hair. Nothing I say will convince him to keep his hair or beard neater.

My other problem is I was using my daughter's computer this morning. I made a comment, I needed my reading glasses because the monitor was much smaller than mine. His response was referring to me I am a stupid F---ing moron. Her monitor is normal mine is larger.

I am at my wits end to the point I am thinking of looking for a home. I don't believe he would talk that way to a man. I don't deserve it and can not stand being spoken to that way much longer. I walked upstairs and didn't say anything. I know it would have escalated into a big fight if I spoke. Any help would be greatly appreciated. Peggy

[Guest guest]

Peggy,

My 18 yo step son was that way when he moved in with us (at 15).  It took setting rules in BLACK AND WHITE and abiding by them (the consiquences must also be spelled out)

For example:  He didn't ever want to wash his hair or brush it and it was LONG (middle of his back) the Rules stated " hair must be kept clean, brushed, and out of your face or we will take you and have it cut. ONLY 1 warning will be given per month. "

 

about 3 months after he had been with us he had to be told 3 times to wash his hair in 1 week.  We went that weekend and got it cut short (boy cut). 

 

As for shaving... I don't have that problem because the school will make him shave if he doesn't do it at home...

 

The language and his behavior toward you those things need to be controlled... What does his doctor say about it?  Is it possible that it is impulse behavior?  my 11 yo AS also has BP and is VERY impulsive with his words and his actions especially when he is frustrated

On Thu, Mar 31, 2011 at 9:34 AM, MaggieJ <Ma88ieMay@...> wrote:

 

My grandson Whom I have custody of is on the spectrum with ASD I have never seen a problem quite like mine. It is a 2 part problem. I will start with his hair. He likes what he calls the bedhead look.Last year his hair was very long and he refused to comb it , so he developed a large knot in the back of his head. We had to go to the barber and have it cut short. He was very upset about this. Now it is growing back in and the bedhead look is back. I have tried to explain, that the hair needs to be combed and then tasseled if you want it that way. He says it makes no sense and is a waste of time. It looks sloppy and so does he. He is 16 and also refuses to shave. No problem if he wanted a neat beard, but it is growing in spotty, with lots of neck hair. Nothing I say will convince him to keep his hair or beard neater.

My other problem is I was using my daughter's computer this morning. I made a comment, I needed my reading glasses because the monitor was much smaller than mine. His response was referring to me I am a stupid F---ing moron. Her monitor is normal mine is larger.

I am at my wits end to the point I am thinking of looking for a home. I don't believe he would talk that way to a man. I don't deserve it and can not stand being spoken to that way much longer. I walked upstairs and didn't say anything. I know it would have escalated into a big fight if I spoke. Any help would be greatly appreciated. Peggy

--

Era Kay Hill

832-775-4452

erakay.hill@...

 

[Guest guest]

My oldest daughter, who is " normal " (in as much as normal is normal these days)

had bad problems with her hair, too. I kept telling her- Brush it, Wash it, Take

Care of it, or it's GONE. She didn't believe me.

One night, I had her come over so I could brush it. I pulled it into a pony

tail, and cut the pony tail off. She was horrified- but she sure as heck washes,

brushes, and takes care of it now. She wanted long hair. Her hair has a lot of

natural wave to it, and it's extremely thick. Plus, we have hard water, so it

knots up very easily. She learned really fast that she can't leave it looking

horrible if she wants it long.

My middle son has ADHD, and is being diagnosed for AS. He won't wash his hair,

brush his hair, or take care of it. He really doesn't mind getting it all cut

off, though, either. He is getting it cut soon, but he's at that " Man Funk "

stage- 12 years old, and getting stinky, greasy, and gross- Man Funk. It's like

pulling teeth to get him in the shower. He'll even go to the extent of going in,

turning it on, sitting outside of the tub, running a wet hand through his hair,

and saying he showered.

Then there's my youngest, she's 9 and diagnosed with ADHD and AS. She also has a

bed wetting problem that even meds are not fully helping. Because of that, she

often smells of urine when she wakes up. This year, we realized that baths at

night were not doing the trick, so we changed. She now takes a shower every

morning, then I help her brush and blow dry her hair, and she has a collection

of body sprays- she can spritz herself with 1 spray scent in the morning- 2

squirts, no more. She loves it- it helps her feel girly, and then I know without

a doubt, she won't smell bad at school, plus I know her hair is knot-free (she

has naturally wavy hair as well, though it's borderline curly in some places-

knots up VERY easily), and she smells nice.

>

> >

> >

> > My grandson Whom I have custody of is on the spectrum with ASD I have never

> > seen a problem quite like mine. It is a 2 part problem. I will start with

> > his hair. He likes what he calls the bedhead look.

> > Last year his hair was very long and he refused to comb it , so he

> > developed a large knot in the back of his head. We had to go to the barber

> > and have it cut short. He was very upset about this. Now it is growing back

> > in and the bedhead look is back. I have tried to explain, that the hair

> > needs to be combed and then tasseled if you want it that way. He says it

> > makes no sense and is a waste of time. It looks sloppy and so does he. He is

> > 16 and also refuses to shave. No problem if he wanted a neat beard, but it

> > is growing in spotty, with lots of neck hair. Nothing I say will convince

> > him to keep his hair or beard neater.

> > My other problem is I was using my daughter's computer this morning. I made

> > a comment, I needed my reading glasses because the monitor was much smaller

> > than mine. His response was referring to me I am a stupid F---ing moron. Her

> > monitor is normal mine is larger.

> > I am at my wits end to the point I am thinking of looking for a home. I

> > don't believe he would talk that way to a man. I don't deserve it and can

> > not stand being spoken to that way much longer. I walked upstairs and didn't

> > say anything. I know it would have escalated into a big fight if I spoke.

> > Any help would be greatly appreciated. Peggy

> >

> >

> >

>

>

>

> --

>

> Era Kay Hill

>

> 832-775-4452

>

> erakay.hill@...

>

[Guest guest]

I couldn't help but chuckled about the middle son running water on himself and

thinking he showered,my son is 14 and 90% of the time that is exactly what he

does except he will step in the tub.Teeth brushing is another story but a recent

trip to the dentist and 2 cavities having to be filled made a perfect

opportunity for me to drive home the importance of really brushing his

teeth.Before that he would put in a swig of mouthwash and marathon brush with a

pin drop of toothpaste. Gotta laugh sometimes,it's better than crying.

> >

> > >

> > >

> > > My grandson Whom I have custody of is on the spectrum with ASD I have

never

> > > seen a problem quite like mine. It is a 2 part problem. I will start with

> > > his hair. He likes what he calls the bedhead look.

> > > Last year his hair was very long and he refused to comb it , so he

> > > developed a large knot in the back of his head. We had to go to the barber

> > > and have it cut short. He was very upset about this. Now it is growing

back

> > > in and the bedhead look is back. I have tried to explain, that the hair

> > > needs to be combed and then tasseled if you want it that way. He says it

> > > makes no sense and is a waste of time. It looks sloppy and so does he. He

is

> > > 16 and also refuses to shave. No problem if he wanted a neat beard, but it

> > > is growing in spotty, with lots of neck hair. Nothing I say will convince

> > > him to keep his hair or beard neater.

> > > My other problem is I was using my daughter's computer this morning. I

made

> > > a comment, I needed my reading glasses because the monitor was much

smaller

> > > than mine. His response was referring to me I am a stupid F---ing moron.

Her

> > > monitor is normal mine is larger.

> > > I am at my wits end to the point I am thinking of looking for a home. I

> > > don't believe he would talk that way to a man. I don't deserve it and can

> > > not stand being spoken to that way much longer. I walked upstairs and

didn't

> > > say anything. I know it would have escalated into a big fight if I spoke.

> > > Any help would be greatly appreciated. Peggy

> > >

> > >

> > >

> >

> >

> >

> > --

> >

> > Era Kay Hill

> >

> > 832-775-4452

> >

> > erakay.hill@

> >

>

[Guest guest]

We go to greenville. They call it risser casting but it is Mehta. Dr P was actually trained by Dr Mehta herself. =) Dr P is AMAZING!

Logan's mama (45 down to 9, 8th cast tomorrow, 23 months old)

From: "caren339@..." <caren339@...>infantile scoliosis treatment Sent: Tue, May 17, 2011 10:04:21 AMSubject: Help!

I just called to Greenville Shriners and was told they don't use the Mehta casting, they use the Risser. Is this correct?

[Guest guest]

We go to greenville. They call it risser casting but it is Mehta. Dr P was actually trained by Dr Mehta herself. =) Dr P is AMAZING!

Logan's mama (45 down to 9, 8th cast tomorrow, 23 months old)

From: "caren339@..." <caren339@...>infantile scoliosis treatment Sent: Tue, May 17, 2011 10:04:21 AMSubject: Help!

I just called to Greenville Shriners and was told they don't use the Mehta casting, they use the Risser. Is this correct?

[Guest guest]

is right! It is 100% mehta casting. Allie has been going there for 1 1/2 yrs and we are very happy with Dr.P!Amy JSent via DROID on Verizon Wireless Help! I just called to Greenville Shriners and was told they don't use the Mehta casting, they use the Risser. Is this correct?