Re: docs names on group

July 17, 2008

Wasn't the whole point of keeping medical professionals off this

group to give us parents a place to vent and speak openly without

feeling we are being watched or censored by " big brother " ? I just

see this as more censorship on us and closing the channels of

communication. I can totally understand following the " netiquette "

rules of being respectful and polite and allowing everyone to have

their own opinion and respectfully allowing them to share their

opinion. This was a safe zone for us.

How are we working against the doctors if I say " go see Dr. Kishan

at LLUMC, he is teriffic! " ? How is my statement illegal? Others have

said he is a rock star! I just think this is way too much

censorship, to where we can't even mention our doctor's name, let

alone mention the ones we weren't happy with. We just need to find

nicer and more respectful ways to say that we disagree with certain

doctors.

I for one try to post/write things I would only say if that person

was right in front of me. I don't think any one of us has " bashed " a

doctor on this group. We simply give out own personal opinion (which

is a protected right - freedom of speech)in a way that is respectful

to others. Of course if someone is vulgar or just goes off the deep

end, and is totally nasty, then they should be kicked off the group.

There is no room for that.

I mean no disrespect by this email to anyone, especially you

, and I hope I have written eloquently and respectfully, but

I just think this is too much censorship. This group needs to remain

a safe zone for us to speak openly about our journey with Infantile

Scoliosis and the doctors that are helping us find our way.

Olivia

> >

> > Hi all. I have a five month old daughter (Farren) with fairly

> severe

> > scoliosis. She has a high thoracic curve which at birth was

about

> 40

> > degrees and has progressed to 58 degrees. She also has a lower

> curve

> > which I'm awaiting a measurement on. It's likely that she has

> some

> > underlying CNS or neuromuscular condition; however, she's

> currently

> > undiagnosed. Her other " issues " include seizures, low tone,

joint

> > contractures in the hands and wrists (but too flexible to be

> called

> > arthrogryposis), mild rocker bottom feet, GERD/poor weight gain,

> > small lungs due to her bell shaped rib cage, and developmental

> delay.

> >

> > We're in a wait and see mode with many of her issues. However,

> the

> > rapid progression of her scoliosis curve is obviously very

> concerning.

> >

> > It has been suggested that our best option is to visit the

> Shriners

> > at SLC for evalation. Can anyone advise on the quickest way to

> get

> > into the Shriners Network? Their website instructs you to drop

> off

> > the application at the nearest Shriners hospital. Also, are

there

> > issues/challenges with going to a hospital that is not the

closest

> > geographically?

> >

> > Finally, is there anyone out there with a similar circumstance

> (small

> > infant, rapid progression, etc.) who has any advice? I'm

> concerned

> > that her age and size (only 9 1/2 lbs) or some of her other

> medical

> > issues may preclude her from the casting treatment.

> >

> > Thanks so much.

> >

> > Cathleen

> >

>

July 17, 2008

I'm curious about that too. Our local ortho did mention something about rib cage deformities when we asked him about casting, but I took it to mean a problem with making the rib cage more concave. I don't remember if he actually said that or if I just assumed that's what he meant from some things I had read elsewhere. But "tubular body molding" has me curious as to what that means. We did notice that Dylan had a little bit of a sunken-in part on the bottom part of his rib cage after his second cast which was really tight in the rib cage area. We asked his ortho about it and he said that he should grow out of it as he get older. It seems pretty mild and I barely even notice it now after his third cast and now that he has been out of

a cast for over a month.

[infantile_scoliosi s] Re: docs

names on group

I totally understand. I really do. We certainly do not want to upset the docs that are helping our children!I do just want to mention though that through my own experience.. . that depending on which doc you see - they can have a totally different outlook on casting than another doc at the same hospital. I'd just hate to have someone waste even more time by going to the "wrong" doc. But in the future those specific doc comments can be done offline. - You can email me offline if you want more details regarding our experience.~> >> > Hi all. I have a five month old daughter (Farren) with fairly > severe > > scoliosis. She has a high thoracic curve which at birth was about > 40 > > degrees and has progressed to 58 degrees. She also has a lower > curve > > which I'm awaiting a measurement on. It's likely that she has > some > > underlying CNS or neuromuscular condition; however, she's > currently > > undiagnosed. Her other "issues" include seizures, low tone, joint > > contractures in the hands and wrists (but too flexible to be > called > > arthrogryposis) , mild rocker bottom feet, GERD/poor weight gain, > > small lungs due to her bell shaped rib cage, and developmental > delay.> > > > We're in a wait and see mode with many of her issues. However, > the > > rapid progression of

her scoliosis curve is obviously very > concerning.> > > > It has been suggested that our best option is to visit the > Shriners > > at SLC for evalation. Can anyone advise on the quickest way to > get > > into the Shriners Network? Their website instructs you to drop > off > > the application at the nearest Shriners hospital. Also, are there > > issues/challenges with going to a hospital that is not the closest > > geographically? > > > > Finally, is there anyone out there with a similar circumstance > (small > > infant, rapid progression, etc.) who has any advice? I'm > concerned > > that her age and size (only 9 1/2 lbs) or some of her other > medical > > issues may preclude her from the casting treatment. > > > > Thanks so much.> > > >

Cathleen> >>

July 17, 2008

Wasn't the whole point of keeping medical professionals off this

> group to give us parents a place to vent and speak openly without

> feeling we are being watched or censored by " big brother " ?

**This group was developed so parents could share their childs

scoliosis experience/knowledge with other enquiring parents. CAST is

still an open forum where you can speak openly/vent. I have only

asked that we refrain from mentioning docs names, and simply state

the hospital/facility. I am not censoring posts to close channels of

communication. CAST will remain a safe zone if we all respect these

very simple rules.

How are we working against the doctors if I say " go see Dr. Kishan

> at LLUMC, he is teriffic! " ? How is my statement illegal?

I am sure that your doc ~is~ a rock star and doesnt mind the

compliment...But, if the comment was not a compliment, I wonder how

much he/she would appreciate that his/her name is being

mentioned...Probably, not so much. If we refrain from mentioning

specific names now, then I am not putting out fires, later.

ISOP has an on-going working relationship with most of these ET docs

that has taken several years to develop. This relationship building

opened the door for Early Treatment in the orthopaedic world/U.S. and

allowed ISOP to hold ETP's, so our children could have a shot at

growing straight. If ET docs express their concern with whats being

said on CAST, then I take steps to ensure that they no longer have

concern, so we can continue working together. These are the docs

that are treating our children. I will do nothing to jeopardize

that. The parents/docs/ISOP have all worked too hard and if ~not~

mentioning their names eases their concern, then we are still working

together and will continue to remain on track. My goal was never to

censor this group. Anyone that knows me, realizes that I am for free

speech and I dont really have time to censor posts.

HRH

> > >

> > > Hi all. I have a five month old daughter (Farren) with fairly

> > severe

> > > scoliosis. She has a high thoracic curve which at birth was

> about

> > 40

> > > degrees and has progressed to 58 degrees. She also has a lower

> > curve

> > > which I'm awaiting a measurement on. It's likely that she has

> > some

> > > underlying CNS or neuromuscular condition; however, she's

> > currently

> > > undiagnosed. Her other " issues " include seizures, low tone,

> joint

> > > contractures in the hands and wrists (but too flexible to be

> > called

> > > arthrogryposis), mild rocker bottom feet, GERD/poor weight

gain,

> > > small lungs due to her bell shaped rib cage, and developmental

> > delay.

> > >

> > > We're in a wait and see mode with many of her issues. However,

> > the

> > > rapid progression of her scoliosis curve is obviously very

> > concerning.

> > >

> > > It has been suggested that our best option is to visit the

> > Shriners

> > > at SLC for evalation. Can anyone advise on the quickest way to

> > get

> > > into the Shriners Network? Their website instructs you to drop

> > off

> > > the application at the nearest Shriners hospital. Also, are

> there

> > > issues/challenges with going to a hospital that is not the

> closest

> > > geographically?

> > >

> > > Finally, is there anyone out there with a similar circumstance

> > (small

> > > infant, rapid progression, etc.) who has any advice? I'm

> > concerned

> > > that her age and size (only 9 1/2 lbs) or some of her other

> > medical

> > > issues may preclude her from the casting treatment.

> > >

> > > Thanks so much.

> > >

> > > Cathleen

> > >

> >

>

July 17, 2008

I couldn't agree more! I was not aware of the new rules when I posted my update with Jack and mentioned Dr. Kishan. That is a VERY important part of this group. This group is how I heard of Dr. Kishan and how I new that many other moms/dads felt very comfortable and confident with him. He asked me how I heard of him, because he noted that I lived about 2 hrs away. I told him about joining the group and he came highly recommended. He was pleased and he noted that he CAN NOT even get in the group. So I'm confused about a posting that would offend a doctor. I don't post often and I log only occasionally so, I'm not sure if I missed something; but I do have to say that it is comforting to share, we have all been through a lot with our children, families and the medical community and to have a place on-line to share,

read, learn and feel safe is incredibly important. Please don't take that away from the members or any new members that are desperate for information. Thank you, Krista Sloan

Subject: Re: docs names on groupTo: infantile_scoliosis Date: Thursday, July 17, 2008, 7:27 PM

Wasn't the whole point of keeping medical professionals off this group to give us parents a place to vent and speak openly without feeling we are being watched or censored by "big brother"? I just see this as more censorship on us and closing the channels of communication. I can totally understand following the "netiquette" rules of being respectful and polite and allowing everyone to have their own opinion and respectfully allowing them to share their opinion. This was a safe zone for us. How are we working against the doctors if I say "go see Dr. Kishan at LLUMC, he is teriffic!"? How is my statement illegal? Others have said he is a rock star! I just think this is way too much censorship, to where we can't even mention our doctor's name, let alone mention the ones we weren't happy with. We just need to find nicer and more respectful ways to say that we disagree with certain

doctors.I for one try to post/write things I would only say if that person was right in front of me. I don't think any one of us has "bashed" a doctor on this group. We simply give out own personal opinion (which is a protected right - freedom of speech)in a way that is respectful to others. Of course if someone is vulgar or just goes off the deep end, and is totally nasty, then they should be kicked off the group. There is no room for that.I mean no disrespect by this email to anyone, especially you , and I hope I have written eloquently and respectfully, but I just think this is too much censorship. This group needs to remain a safe zone for us to speak openly about our journey with Infantile Scoliosis and the doctors that are helping us find our way. Olivia> >> > Hi all. I have

a five month old daughter (Farren) with fairly > severe > > scoliosis. She has a high thoracic curve which at birth was about > 40 > > degrees and has progressed to 58 degrees. She also has a lower > curve > > which I'm awaiting a measurement on. It's likely that she has > some > > underlying CNS or neuromuscular condition; however, she's > currently > > undiagnosed. Her other "issues" include seizures, low tone, joint > > contractures in the hands and wrists (but too flexible to be > called > > arthrogryposis) , mild rocker bottom feet, GERD/poor weight gain, > > small lungs due to her bell shaped rib cage, and developmental > delay.> > > > We're in a wait and see mode with many of her issues. However, > the > > rapid progression of her scoliosis curve is obviously very >

concerning.> > > > It has been suggested that our best option is to visit the > Shriners > > at SLC for evalation. Can anyone advise on the quickest way to > get > > into the Shriners Network? Their website instructs you to drop > off > > the application at the nearest Shriners hospital. Also, are there > > issues/challenges with going to a hospital that is not the closest > > geographically? > > > > Finally, is there anyone out there with a similar circumstance > (small > > infant, rapid progression, etc.) who has any advice? I'm > concerned > > that her age and size (only 9 1/2 lbs) or some of her other > medical > > issues may preclude her from the casting treatment. > > > > Thanks so much.> > > > Cathleen>

>>

July 17, 2008

I am not taking anything away from parents that are desperate for

information, and CAST will continue providing solid info to new

parents.

HRH

> > >

> > > Hi all. I have a five month old daughter (Farren) with fairly

> > severe

> > > scoliosis. She has a high thoracic curve which at birth was

> about

> > 40

> > > degrees and has progressed to 58 degrees. She also has a lower

> > curve

> > > which I'm awaiting a measurement on. It's likely that she has

> > some

> > > underlying CNS or neuromuscular condition; however, she's

> > currently

> > > undiagnosed. Her other " issues " include seizures, low tone,

> joint

> > > contractures in the hands and wrists (but too flexible to be

> > called

> > > arthrogryposis) , mild rocker bottom feet, GERD/poor weight

gain,

> > > small lungs due to her bell shaped rib cage, and developmental

> > delay.

> > >

> > > We're in a wait and see mode with many of her issues. However,

> > the

> > > rapid progression of her scoliosis curve is obviously very

> > concerning.

> > >

> > > It has been suggested that our best option is to visit the

> > Shriners

> > > at SLC for evalation. Can anyone advise on the quickest way to

> > get

> > > into the Shriners Network? Their website instructs you to drop

> > off

> > > the application at the nearest Shriners hospital. Also, are

> there

> > > issues/challenges with going to a hospital that is not the

> closest

> > > geographically?

> > >

> > > Finally, is there anyone out there with a similar circumstance

> > (small

> > > infant, rapid progression, etc.) who has any advice? I'm

> > concerned

> > > that her age and size (only 9 1/2 lbs) or some of her other

> > medical

> > > issues may preclude her from the casting treatment.

> > >

> > > Thanks so much.

> > >

> > > Cathleen

> > >

> >

>

July 17, 2008

I am not taking anything away from parents that are desperate for

information, and CAST will continue providing solid info to new

parents.

HRH

> > >

> > > Hi all. I have a five month old daughter (Farren) with fairly

> > severe

> > > scoliosis. She has a high thoracic curve which at birth was

> about

> > 40

> > > degrees and has progressed to 58 degrees. She also has a lower

> > curve

> > > which I'm awaiting a measurement on. It's likely that she has

> > some

> > > underlying CNS or neuromuscular condition; however, she's

> > currently

> > > undiagnosed. Her other " issues " include seizures, low tone,

> joint

> > > contractures in the hands and wrists (but too flexible to be

> > called

> > > arthrogryposis) , mild rocker bottom feet, GERD/poor weight

gain,

> > > small lungs due to her bell shaped rib cage, and developmental

> > delay.

> > >

> > > We're in a wait and see mode with many of her issues. However,

> > the

> > > rapid progression of her scoliosis curve is obviously very

> > concerning.

> > >

> > > It has been suggested that our best option is to visit the

> > Shriners

> > > at SLC for evalation. Can anyone advise on the quickest way to

> > get

> > > into the Shriners Network? Their website instructs you to drop

> > off

> > > the application at the nearest Shriners hospital. Also, are

> there

> > > issues/challenges with going to a hospital that is not the

> closest

> > > geographically?

> > >

> > > Finally, is there anyone out there with a similar circumstance

> > (small

> > > infant, rapid progression, etc.) who has any advice? I'm

> > concerned

> > > that her age and size (only 9 1/2 lbs) or some of her other

> > medical

> > > issues may preclude her from the casting treatment.

> > >

> > > Thanks so much.

> > >

> > > Cathleen

> > >

> >

>

July 17, 2008

I find it hard to believe that a doctor, someone whom had dedicated a large portion of their life to their craft, and then go on to help children, would STOP during so, because of a posting on a web site! I work in the medical community, and trust me doctors have thicker skin then that! I don't appreciate posting something and then not seeing it until 2 days later after I wrote it. Is that because of this "censorship"? Please, is this really necessary? As parents I think we deserve to know the good, the bad and ugly if there is any to share. I would feel betrayed if it was any less then that. ~Krista Sloan

Subject: Re: docs names on groupTo: infantile_scoliosis Date: Thursday, July 17, 2008, 9:33 PM

Wasn't the whole point of keeping medical professionals off this > group to give us parents a place to vent and speak openly without > feeling we are being watched or censored by "big brother"? **This group was developed so parents could share their childs scoliosis experience/knowledg e with other enquiring parents. CAST is still an open forum where you can speak openly/vent. I have only asked that we refrain from mentioning docs names, and simply state the hospital/facility. I am not censoring posts to close channels of communication. CAST will remain a safe zone if we all respect these very simple rules. How are we working against the doctors if I say "go see Dr. Kishan > at LLUMC, he is teriffic!"? How is my statement illegal?I am sure that your doc ~is~ a rock star and doesnt mind the compliment.. .But, if the comment was not a compliment, I wonder how much he/she would

appreciate that his/her name is being mentioned... Probably, not so much. If we refrain from mentioning specific names now, then I am not putting out fires, later. ISOP has an on-going working relationship with most of these ET docs that has taken several years to develop. This relationship building opened the door for Early Treatment in the orthopaedic world/U.S. and allowed ISOP to hold ETP's, so our children could have a shot at growing straight. If ET docs express their concern with whats being said on CAST, then I take steps to ensure that they no longer have concern, so we can continue working together. These are the docs that are treating our children. I will do nothing to jeopardize that. The parents/docs/ ISOP have all worked too hard and if ~not~ mentioning their names eases their concern, then we are still working together and will continue to remain on track. My goal was never to

censor this group. Anyone that knows me, realizes that I am for free speech and I dont really have time to censor posts. HRH > > >> > > Hi all. I have a five month old daughter (Farren) with fairly > > severe > > > scoliosis. She

has a high thoracic curve which at birth was > about > > 40 > > > degrees and has progressed to 58 degrees. She also has a lower > > curve > > > which I'm awaiting a measurement on. It's likely that she has > > some > > > underlying CNS or neuromuscular condition; however, she's > > currently > > > undiagnosed. Her other "issues" include seizures, low tone, > joint > > > contractures in the hands and wrists (but too flexible to be > > called > > > arthrogryposis) , mild rocker bottom feet, GERD/poor weight gain, > > > small lungs due to her bell shaped rib cage, and developmental > > delay.> > > > > > We're in a wait and see mode with many of her issues. However, > > the > > > rapid progression of her scoliosis curve is obviously very

> > concerning.> > > > > > It has been suggested that our best option is to visit the > > Shriners > > > at SLC for evalation. Can anyone advise on the quickest way to > > get > > > into the Shriners Network? Their website instructs you to drop > > off > > > the application at the nearest Shriners hospital. Also, are > there > > > issues/challenges with going to a hospital that is not the > closest > > > geographically? > > > > > > Finally, is there anyone out there with a similar circumstance > > (small > > > infant, rapid progression, etc.) who has any advice? I'm > > concerned > > > that her age and size (only 9 1/2 lbs) or some of her other > > medical > > > issues may preclude her from the casting treatment.

> > > > > > Thanks so much.> > > > > > Cathleen> > >> >>

July 17, 2008

I find it hard to believe that a doctor, someone whom had dedicated a large portion of their life to their craft, and then go on to help children, would STOP during so, because of a posting on a web site! I work in the medical community, and trust me doctors have thicker skin then that! I don't appreciate posting something and then not seeing it until 2 days later after I wrote it. Is that because of this "censorship"? Please, is this really necessary? As parents I think we deserve to know the good, the bad and ugly if there is any to share. I would feel betrayed if it was any less then that. ~Krista Sloan

Subject: Re: docs names on groupTo: infantile_scoliosis Date: Thursday, July 17, 2008, 9:33 PM

Wasn't the whole point of keeping medical professionals off this > group to give us parents a place to vent and speak openly without > feeling we are being watched or censored by "big brother"? **This group was developed so parents could share their childs scoliosis experience/knowledg e with other enquiring parents. CAST is still an open forum where you can speak openly/vent. I have only asked that we refrain from mentioning docs names, and simply state the hospital/facility. I am not censoring posts to close channels of communication. CAST will remain a safe zone if we all respect these very simple rules. How are we working against the doctors if I say "go see Dr. Kishan > at LLUMC, he is teriffic!"? How is my statement illegal?I am sure that your doc ~is~ a rock star and doesnt mind the compliment.. .But, if the comment was not a compliment, I wonder how much he/she would

appreciate that his/her name is being mentioned... Probably, not so much. If we refrain from mentioning specific names now, then I am not putting out fires, later. ISOP has an on-going working relationship with most of these ET docs that has taken several years to develop. This relationship building opened the door for Early Treatment in the orthopaedic world/U.S. and allowed ISOP to hold ETP's, so our children could have a shot at growing straight. If ET docs express their concern with whats being said on CAST, then I take steps to ensure that they no longer have concern, so we can continue working together. These are the docs that are treating our children. I will do nothing to jeopardize that. The parents/docs/ ISOP have all worked too hard and if ~not~ mentioning their names eases their concern, then we are still working together and will continue to remain on track. My goal was never to

censor this group. Anyone that knows me, realizes that I am for free speech and I dont really have time to censor posts. HRH > > >> > > Hi all. I have a five month old daughter (Farren) with fairly > > severe > > > scoliosis. She

has a high thoracic curve which at birth was > about > > 40 > > > degrees and has progressed to 58 degrees. She also has a lower > > curve > > > which I'm awaiting a measurement on. It's likely that she has > > some > > > underlying CNS or neuromuscular condition; however, she's > > currently > > > undiagnosed. Her other "issues" include seizures, low tone, > joint > > > contractures in the hands and wrists (but too flexible to be > > called > > > arthrogryposis) , mild rocker bottom feet, GERD/poor weight gain, > > > small lungs due to her bell shaped rib cage, and developmental > > delay.> > > > > > We're in a wait and see mode with many of her issues. However, > > the > > > rapid progression of her scoliosis curve is obviously very

> > concerning.> > > > > > It has been suggested that our best option is to visit the > > Shriners > > > at SLC for evalation. Can anyone advise on the quickest way to > > get > > > into the Shriners Network? Their website instructs you to drop > > off > > > the application at the nearest Shriners hospital. Also, are > there > > > issues/challenges with going to a hospital that is not the > closest > > > geographically? > > > > > > Finally, is there anyone out there with a similar circumstance > > (small > > > infant, rapid progression, etc.) who has any advice? I'm > > concerned > > > that her age and size (only 9 1/2 lbs) or some of her other > > medical > > > issues may preclude her from the casting treatment.

> > > > > > Thanks so much.> > > > > > Cathleen> > >> >>

July 18, 2008

And guys..before you totally flip out on ..lets cut her some slack.

No matter how you respectfully say it...it's still clear your upstet.

At some point, something was said, and NOW the rules have been revised, for the protection of us and our children's physicians.

We want these docs on our side, to help our kids.

I know we all need to vent..and that's still ok, but what's not OK is to bring the docs name into it, good or bad.

If we have a new parent or a parent wishing to know more about a doctor specifically, all we have to do is email that parent off of the group.

I think CAST still provides a wonderful resource for parents, but has to protect the privacy and respect of our docs.

Subject: Re: docs names on groupTo: infantile_scoliosis Date: Thursday, July 17, 2008, 5:51 PM

I am not taking anything away from parents that are desperate for information, and CAST will continue providing solid info to new parents. HRH > > >> > > Hi all. I have a five month old daughter (Farren) with fairly > > severe > > > scoliosis. She has a high thoracic curve which at birth was > about > > 40 > > > degrees and has progressed to 58 degrees. She also has a lower > > curve > > > which I'm awaiting a measurement on. It's likely that she has > > some > > > underlying CNS or neuromuscular condition; however, she's > > currently > > > undiagnosed. Her other "issues" include seizures, low tone, > joint > > > contractures in the hands and wrists (but too flexible to be > > called > > > arthrogryposis) , mild rocker bottom feet, GERD/poor weight gain, > >

> small lungs due to her bell shaped rib cage, and developmental > > delay.> > > > > > We're in a wait and see mode with many of her issues. However, > > the > > > rapid progression of her scoliosis curve is obviously very > > concerning.> > > > > > It has been suggested that our best option is to visit the > > Shriners > > > at SLC for evalation. Can anyone advise on the quickest way to > > get > > > into the Shriners Network? Their website instructs you to drop > > off > > > the application at the nearest Shriners hospital. Also, are > there > > > issues/challenges with going to a hospital that is not the > closest > > > geographically? > > > > > > Finally, is there anyone out there with a similar circumstance >

> (small > > > infant, rapid progression, etc.) who has any advice? I'm > > concerned > > > that her age and size (only 9 1/2 lbs) or some of her other > > medical > > > issues may preclude her from the casting treatment. > > > > > > Thanks so much.> > > > > > Cathleen> > >> >>

July 18, 2008

Sandi...

I am truly upset that you have taken this to be a personal threat on .

If you truly think it the CAST support group is so easy to manage, as is ISOP, then why aren't you doing more to help the ET cause?

Yes, it may take 5 minutes to set up a Yahoo groups account, but then how long does it take to manage it? How long does it take to set up the rules to have everyone's best interests in mind? How long does it take to set up rules and regulations for ISOP? Meet w/ISOP's board? How long does it take to oversee fundraisers in the USA and abroad? How long does it take to plan and implement ETP's ..coordinating hospitals, ER times, Doctor's availability, insurance, parents and children to attend? How long does it take daily to email and reply to phone calls to worried and concerned parents? How long does it take each day to correspond w/docs and hospitals who are already participating with ET who have a question or concern?

And Sandi..this is just a SMALL portion of what and ISOP does each day.

has chosen to dedicate her life to helping promote early treatment b/c she believes in it and b/c her daughter didn't have that option.

For that I am eternally grateful...and I think you need to take a step back and look at yourself and your remarks to her, especially on a public forum for all of us to read?

From: Sandi <crunchymomgmail>Subject: Re: Re: docs names on groupTo: infantile_scoliosis Date: Friday, July 18, 2008, 1:40 PM

> How in the world can this simple rule be turned into ISOP/CAST not> having the patients/families best interest at hand????> **Yes, I am rendered speechless by this insulting comment...How IS it in our best interest to police what can be said by threat ofremoval from the group? Alienating the parents who are going throughit doesn't benefit anyone. If parents cannot trust that they aregetting the most objective information, going into this treatment, isthat serving the interest of the public? It's not a simple rule.It's freedom of speech. It's in the Constitution.> And, yet, it appears that it has parlayed into a doctor-pandering place> of policing and censorship.. .> ***doctor pandering, policing & censorship. This group has been around> for approx. 5 years and never once have I censored a post. CAST is now> up to almost 23,000 uncensored posts.But, you are not putting posts through until you have manually approved them.Censorship is defined as the suppression or deletion of material. So,I can reply and say Dr. Sturm did not put in rotation windows in mycast and you'll leave it? No. Not based on the new rule.> ISOP should have its own group, separate from the CAST support group> if that is the problem at hand.> **Yeah, lets make things really complicated. As it stands, ISOP & CAST> are as separate as they can be, at this point.Seriously? That's complicated? It takes five minutes to set up ayahoo group, tops.> If surgeons are so threatened by the voice of the patients, that's> absurd.> ***I never said threatened, I said concerned. Big difference.Fine, then concerned. If surgeons are concerned with what is beingsaid on the group, maybe they need to figure out WHY people have beensaying negative things (ie. doing the procedure incorrectly or"putting their own spin on it" - your own words).> ***Yes, you can google CAST, but our posts are only available to> members, not the general public.What I mean is - people can talk about surgeons anywhere online. Whyshould CAST - the parent support group for CASTING protect THEM whenit's for US?> **Good doctors do reflect everday on how they can improve quality of> care for their patients.>Great - then they can reflect on why they're so "concerned" about whatit being said and no other child will not receive the crucialtreatment they need. Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today.

July 18, 2008

I have to begin by saying that my daughter Meredith Anne would not be where she is today if it were not for and ISOP. When we found out she had infantile scoliosis, we began our research and found . Within a week of speaking to , our daughter was in her first cast. I tell everyone I know that we owe Meredith Anne's correction to . Without her, I cannot even imagine where my daughter would be now.

I think we should all have enough respect for to abide by the rules she sets. I don't think any of us have any idea how much time and hard work has put into ISOP over the years, and our children are the benefactors of years of research and hard work done by her. Shouldn't we be grateful for that? I definitely am!!

If you want to know the name of a specific doctor applying POP jackets at a particular hospital, email privately. I know it might take an extra few minutes, but it really doesn't compare to all the time has put into making sure our children receive the best treatment.

, we are GRATEFUL for all that you do for our children and for early treatment.

tte