Re: docs names on group

[Guest guest]

How IS it in our best interest to police what can be said by threat of

removal from the group? Alienating the parents who are going through

it doesn't benefit anyone.

**AGAIN, I will reiterate that no one is policing your posts and that

no one has been threatened to be removed... If you cant abide by the

rules, I'll just remove you. I dont threaten. If the msg's you post

were censored, you would have noticed, right?

Alienating the parents who are going through it doesn't benefit

anyone. If parents cannot trust that they are getting the most

objective information, going into this treatment, is that serving the

interest of the public? It's not a simple rule.

**If the simple rule cant be adhered to by members, they will be

alienating themselves from CAST. ISOP's goal in serving the public

is to provide correct information on the Early Treatment Method.

Providing correct information will gain/maintain trust.

It's freedom of speech. It's in the Constitution.

**There are other groups that have absolutely no rules, no mission or

vision. If you are that unhappy with CAST, feel free to find a group

that would suit you better.

But, you are not putting posts through until you have manually

approved them. Censorship is defined as the suppression or deletion

of material.

**I have not suppressed or deleted any posts.

I can reply and say Dr._____did not put in rotation windows in my

cast and you'll leave it? No. Not based on the new rule.

**As I recall, that post did go through. As did all the rest.

I would prefer the statement read " The team in Chicago, or the

Chicago Shriners did not put in rotation windows in my cast. " NOT

DR. ______!! This way members are still recieving objective

information and CAST isnt on the chopping block every other day.

Seriously? That's complicated? It takes five minutes to set up a

yahoo group, tops.

**Yes, I realize that. I started CAST and know what it takes. Why

would we set up another group? Better yet, lets set up one with no

rules and see how well everyone works together.

Fine, then concerned. If surgeons are concerned with what is being

said on the group, maybe they need to figure out WHY people have been

saying negative things (ie. doing the procedure incorrectly or

" putting their own spin on it " .

**Surgeons ~are~ ensuring their patients get the best care possible.

Why do you think they agree to host ET tutorials? Not to play golf.

What I mean is - people can talk about surgeons anywhere online. Why

should CAST - the parent support group for CASTING protect THEM when

it's for US?

**I am trying to protect it all; the patients/docs/ET/ISOP/CAST

Great - then they can reflect on why they're so " concerned " about what

it being said and no other child will not receive the crucial

treatment they need.

**Just because concern has been expressed, doesnt mean that children

will not get ET. That doesnt make sense.

HRH

>

> > 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

of

> removal from the group? Alienating the parents who are going

through

> it doesn't benefit anyone. If parents cannot trust that they are

> getting the most objective information, going into this treatment,

is

> that 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 my

> cast 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 a

> yahoo 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 being

> said on the group, maybe they need to figure out WHY people have

been

> saying 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.

Why

> should CAST - the parent support group for CASTING protect THEM when

> it'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

what

> it being said and no other child will not receive the crucial

> treatment they need.

>

[Guest guest]

To those that are upset:

is the moderator and the owner of this list. Therfore she can set up whatever rules she feels are necessary. She has worked too long and too hard to foster goodwill with the medical community in promoting the Early Treatment of Progressive Infantile Scoliosis with the Mehta Procedure using the series of Plaster of Paris jackets to let it all slide away because someone may be upset because they can't use a dr's name. does not censor anyone's post. I have known her long enough that she would be the last person to promote censorship in any way. She is asking for discretion and respect for the medical professionals. Because while a facility may have the correct equipment to do the procedure, not all of the staff may be trained to do it.

I would be the first person to say that in treating my daughter's scoliosis there are dr's at Cincinnati Children's that I don't want near her - but there are other's I would sleep in front of their car to get her in to. The same at my children's pediatrician's office.

I also took the time to do a little searching and see that a few of you are VERY new members (within the last 6 months or less) - so you really haven't gotten to know yet. She really is your new best friend. And she does all of this while taking care of her own child who has gone through more procedures than any child has a right too - all with a smile. , and other members of this group, will take the time to walk you through the procedure of getting your child to the right people - if you let them. I, a mother whose child doesn't have the same condition as yours, can also help. I have even met some parents at our hospital just to offer support or bring a meal or whatever. Why? Because I now know the orthopedic dept at my local Children's Hospital.

I have nothing to gain or lose by posting this. My daughter has Congenital Scoliosis - so this procedure was not an option for her; BUT I have seen the success stories and I truly believe that it does work when done properly for those children with Progressive Infantile Scoliosis.

You say you came here looking for support and information. It's there if you want it. If you don't, there are other groups - I know, I tried a bunch before I found a couple that were a fit for me. Heck, when I realized this was Infantile Scoliosis and how different it was from what my daughter had, I offered to leave the group. made me feel that I was still welcome to stay around - that was in December of 2003.

Gail

June was National Scoliosis Awareness Month!Please visit http://www.scoliosis.org/ for more information.********************************************************************Mom to , 11/28/98 - ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05, 04/20/06 & 6/12/08; Mole (Spitz Nevus) removal: 11/26/07 & 2/11/08

[Guest guest]

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?

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.

[Guest guest]

To those that arent upset:

Thanks for backing me up on this one. I appreciate all the kind

words and want you to know that your understanding means the world to

me. I try to look at things from all angles in order to make the

right decisions for ET & ISOP. The revised netiquette will stand. I

have thought this through (everyday for 2 weeks) and have made my

decision, in the best interest of the children/ET/ISOP/and the docs.

On another note, I turn 40 years old this weekend and wont be around

to censor posts! ha! Just jokin. I'll always send posts through at

least 2/3 times per day.

Have a great weekend.

HRH

To all new members: Sorry, you entered this group on such a sketchy

day. Normally, we all get a long just great.

>

> To those that are upset:

>  

> is the moderator and the owner of this list. Therfore she

can set up whatever rules she feels are necessary. She has worked too

long and too hard to foster goodwill with the medical community in

promoting the Early Treatment of Progressive Infantile Scoliosis with

the Mehta Procedure using the series of Plaster of Paris jackets to

let it all slide away because someone may be upset because they can't

use a dr's name. does not censor anyone's post. I have known

her long enough that she would be the last person to promote

censorship in any way. She is asking for discretion and respect for

the medical professionals. Because while a facility may have the

correct equipment to do the procedure, not all of the staff may be

trained to do it.

>  

> I would be the first person to say that in treating my daughter's

scoliosis there are dr's at Cincinnati Children's that I don't want

near her - but there are other's I would sleep in front of their car

to get her in to. The same at my children's pediatrician's office.

>  

> I also took the time to do  a little searching and see that a few

of you are VERY new members (within the last 6 months or less) - so

you really haven't gotten to know yet. She really is your new

best friend. And she does all of this while taking care of her own

child who has gone through more procedures than any child has a right

too - all with a smile. , and other members of this

group, will take the time to walk you through the procedure of

getting your child to the right people - if you let them. I, a mother

whose child doesn't have the same condition as yours, can also help.

I have even met some parents at our hospital just to offer support or

bring a meal or whatever. Why? Because I now know the orthopedic dept

at my local Children's Hospital.

>  

> I have nothing to gain or lose by posting this. My daughter has

Congenital Scoliosis - so this procedure was not an option for her;

BUT I have seen the success stories and I truly believe that it does

work when done properly for those children with Progressive Infantile

Scoliosis.

>  

> You say you came here looking for support and information. It's

there if you want it. If you don't, there are other groups - I know,

I tried a bunch before I found a couple that were a fit for me. Heck,

when I realized this was Infantile Scoliosis and how different it was

from what my daughter had, I offered to leave the group. made

me feel that I was still welcome to stay around - that was in

December of 2003.

>  

>  

> Gail

>  

> June was National Scoliosis Awareness Month!

> Please visit http://www.scoliosis.org/ for more information.

> ********************************************************************

> Mom to , 11/28/98 - ADHD/ODD/SID

> and , 02/02/02 - Congenital Scoliosis, VATER Association

(vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome,

Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital

3/21/05, VEPTR Expansions: 11/05, 04/20/06 & 6/12/08; Mole (Spitz

Nevus) removal: 11/26/07 & 2/11/08

>

[Guest guest]

Okay, so those of us that disagree with have been told

to " get over ourselves " and that we " OWE " for having a Mehta

trained doctor. I don't appreciate these comments. Please feel free

to disagree with me. I'm an educated person who has been told to

question things, the why, the how. I've exercised that right and that

is how I learn and get to hear other people's opinion. This is a

great channel of communication right now, but I don't think anyone

should be told what to do or how to feel. I don't think anyone on

this group should be told to get over themselves or that they owe

anyone anything. That crossed the line with me right there. Post your

opinion, what you feel and think, but don't tell anyone else what to

feel and think. I am seriously thinking about unsubscribing from this

group if each individual is not allowed to express their thoughts or

opinion without being singled out. All I meant was to post my opinion

and open a channel of communication on the topic. responded

very well to my post and I see where she is coming from and she made

some good points, but I still have to respectfully disagree with her.

That's all it is. That's all it boils down to. It doesn't mean I will

not abide by the new rules (if I stay on)it just means I disagree. I

am very surprised that a post telling specific parents to get over

themselves and that we OWE even made it past the netiqutte

rules. Remarks like that should not make it past the " gatekeeper " if

I can't even say " Dr.Kishan " anymore. " Get over yourself " , " You OWE

" , " Go see Dr. Kishan at LLUMC, he's great! " . Which statements

do you think should be screened/censored/prohibited?

I hope everyone has a great weekend and can just be open to the fact

that many times we will disagree, but we are still in this together.

To quote an old cliche, we need to agree to disagree.

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

> > > > >

> > > >

> > >

> >

>

[Guest guest]

HAPPY 40th BIRTHDAY !Enjoy your celebration. 40 is fabulous!TashaMommy of twin boys- and 3 years oldFort Worth, Texas is 7.5 degrees and brace free!!!Casting 14 months and bracing 10 monthsSubject: Re: docs names on groupTo: infantile_scoliosis Date: Friday, July 18, 2008, 2:49 PM

To those that arent upset:

Thanks for backing me up on this one. I appreciate all the kind

words and want you to know that your understanding means the world to

me. I try to look at things from all angles in order to make the

right decisions for ET & ISOP. The revised netiquette will stand. I

have thought this through (everyday for 2 weeks) and have made my

decision, in the best interest of the children/ET/ ISOP/and the docs.

On another note, I turn 40 years old this weekend and wont be around

to censor posts! ha! Just jokin. I'll always send posts through at

least 2/3 times per day.

Have a great weekend.

HRH

To all new members: Sorry, you entered this group on such a sketchy

day. Normally, we all get a long just great.

>

> To those that are upset:

>

> is the moderator and the owner of this list. Therfore she

can set up whatever rules she feels are necessary. She has worked too

long and too hard to foster goodwill with the medical community in

promoting the Early Treatment of Progressive Infantile Scoliosis with

the Mehta Procedure using the series of Plaster of Paris jackets to

let it all slide away because someone may be upset because they can't

use a dr's name. does not censor anyone's post. I have known

her long enough that she would be the last person to promote

censorship in any way. She is asking for discretion and respect for

the medical professionals. Because while a facility may have the

correct equipment to do the procedure, not all of the staff may be

trained to do it.

>

> I would be the first person to say that in treating my daughter's

scoliosis there are dr's at Cincinnati Children's that I don't want

near her - but there are other's I would sleep in front of their car

to get her in to. The same at my children's pediatrician' s office.

>

> I also took the time to do a little searching and see that a few

of you are VERY new members (within the last 6 months or less) - so

you really haven't gotten to know yet. She really is your new

best friend. And she does all of this while taking care of her own

child who has gone through more procedures than any child has a right

too - all with a smile. , and other members of this

group, will take the time to walk you through the procedure of

getting your child to the right people - if you let them. I, a mother

whose child doesn't have the same condition as yours, can also help.

I have even met some parents at our hospital just to offer support or

bring a meal or whatever. Why? Because I now know the orthopedic dept

at my local Children's Hospital.

>

> I have nothing to gain or lose by posting this. My daughter has

Congenital Scoliosis - so this procedure was not an option for her;

BUT I have seen the success stories and I truly believe that it does

work when done properly for those children with Progressive Infantile

Scoliosis.

>

> You say you came here looking for support and information. It's

there if you want it. If you don't, there are other groups - I know,

I tried a bunch before I found a couple that were a fit for me. Heck,

when I realized this was Infantile Scoliosis and how different it was

from what my daughter had, I offered to leave the group. made

me feel that I was still welcome to stay around - that was in

December of 2003.

>

>

> Gail

>

> June was National Scoliosis Awareness Month!

> Please visit http://www.scoliosi s.org/ for more information.

> ************ ********* ********* ********* ********* ********* ********* **

> Mom to , 11/28/98 - ADHD/ODD/SID

> and , 02/02/02 - Congenital Scoliosis, VATER Association

(vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome,

Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital

3/21/05, VEPTR Expansions: 11/05, 04/20/06 & 6/12/08; Mole (Spitz

Nevus) removal: 11/26/07 & 2/11/08

>

[Guest guest]

I am seriously thinking about unsubscribing from this group if each

individual is not allowed to express their thoughts or opinion

without being singled out.

**The revised netiquette does not state that you're not allowed to

express your thoughts/opinions, respectively....

I am very surprised that a post telling specific parents to get over

themselves and that we OWE even made it past the netiqutte

rules. Remarks like that should not make it past the " gatekeeper " if

I can't even say " Dr.Kishan " anymore. " Get over yourself " , " You OWE

" , " Go see Dr. Kishan at LLUMC, he's great! " . Which statements

do you think should be screened/censored/prohibited?

**Absolutely, nothing has been censored...Not even this post. The

revised netiquette asks members to refrain from mentioning the names

of their docs. Thats it.

No one owes a thing, just a little respect. This converstaion

is quite daft and unproductive, at this point. I am glad that we can

all agree to disagree. But, enough is enough.

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

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Please don't insinuate that because some of us parents disagree with

the new policy that we do not support ISOP and or " give

something back " . Now I feel like I have to justify myself: The way I

personally have tried to give back is by making a monthly donation to

ISOP, which I have been doing since January - it's part of my monthly

budget now. My parents, in-laws, brother and sister make donations

too. I organized a fundraising campaign in Isabella's name in January

and sent out letters, ISOP donation slips, and self adressed stamped

evelopes to all my friends, family and co-workers. I don't know how

much was raised for ISOP, but I have a feeling most did mail a

donation to ISOP. I contact local/regional parents via there personal

email account to tell them about LLUMC. (See I can abide by the new

rule - I just disagree with it). I make myself available to them 24/7

and I email them often to check in on their children. I've driven to

Los Angeles to meet in person, to hear her speak and to get a

glimpse of her vision so I can help carry it out - to do my part. I

did not help or donate to your HOPEfest because I already donate

directly to ISOP. I do use this group as a way to vent with other

parents. They are the only ones that understand. I recently sent an

update on Isabella to family and friends. I opened up to them and

told them what casting days are like. They had no idea. They thought

it was like getting your arm casted. They didn't even know she was

under anesthesia and in an OR. I vent on this group because we're

all in the same situation and we can empathize with eachother. We can

relate to what we are feeling and going through. When I need

direction on how to help ISOP, I call and ask her what we

need to do, not through CAST. I keep the two channels separate. I

vent and seek support on the group and I call directly to

find out what needs to be done. She told me we needed to raise money

so that's what I've been trying to do. Actaully that's on the agenda

for the CA moms & dads. We've met to brainstorm on how to help ISOP.

Please just don't insinuate that we do not support or are

giving her a bad time. I just diagree with the policy. I do my

darnest to support ISOP but I do have a right to express my opinion

on a decision that does affect me and the way I will need to post

from now on. I will continue to abide by the new policy as long as I

remain a member of this group. Maybe we need to pull the discussion

back to simply -why we agree or disagree with the new policy- and not

bring anything else into the mix.

Olivia

> >

> > I just don't get this.

> >

> > The CAST support group is a support group for the parents going

> > through casting, per the name and description. And, yet, it

appears

> > that it has parlayed into a doctor-pandering place of policing and

> > censorship not at all considering the best interest of the

families

> > who are enduring this treatment.

> >

> > ISOP should have its own group, separate from the CAST support

group

> > if that is the problem at hand. If surgeons are so threatened by

the

> > voice of the patients, that's absurd. This is the information age

and

> > everything from yahoogroups to message boards are google-able.

> > Perhaps they should reflect on what they're doing, if there is so

much

> > negativity and " bashing " (not my words or take on the issue) out

there

> > about their practice.

> >

>

[Guest guest]

I second that! Happy 40th ! I hope you enjoy your special day.

I hear 40 is the new 30. :0)

Olivia

>

> >

>

> > To those that are upset:

>

> >

>

> > is the moderator and the owner of this list. Therfore she

>

> can set up whatever rules she feels are necessary. She has worked

too

>

> long and too hard to foster goodwill with the medical community in

>

> promoting the Early Treatment of Progressive Infantile Scoliosis

with

>

> the Mehta Procedure using the series of Plaster of Paris jackets to

>

> let it all slide away because someone may be upset because they

can't

>

> use a dr's name. does not censor anyone's post. I have

known

>

> her long enough that she would be the last person to promote

>

> censorship in any way. She is asking for discretion and respect for

>

> the medical professionals. Because while a facility may have the

>

> correct equipment to do the procedure, not all of the staff may be

>

> trained to do it.

>

> >

>

> > I would be the first person to say that in treating my daughter's

>

> scoliosis there are dr's at Cincinnati Children's that I don't want

>

> near her - but there are other's I would sleep in front of their

car

>

> to get her in to. The same at my children's pediatrician' s office.

>

> >

>

> > I also took the time to do a little searching and see that a few

>

> of you are VERY new members (within the last 6 months or less) - so

>

> you really haven't gotten to know yet. She really is your

new

>

> best friend. And she does all of this while taking care of her own

>

> child who has gone through more procedures than any child has a

right

>

> too - all with a smile. , and other members of this

>

> group, will take the time to walk you through the procedure of

>

> getting your child to the right people - if you let them. I, a

mother

>

> whose child doesn't have the same condition as yours, can also

help.

>

> I have even met some parents at our hospital just to offer support

or

>

> bring a meal or whatever. Why? Because I now know the orthopedic

dept

>

> at my local Children's Hospital.

>

> >

>

> > I have nothing to gain or lose by posting this. My daughter has

>

> Congenital Scoliosis - so this procedure was not an option for her;

>

> BUT I have seen the success stories and I truly believe that it

does

>

> work when done properly for those children with Progressive

Infantile

>

> Scoliosis.

>

> >

>

> > You say you came here looking for support and information. It's

>

> there if you want it. If you don't, there are other groups - I

know,

>

> I tried a bunch before I found a couple that were a fit for me.

Heck,

>

> when I realized this was Infantile Scoliosis and how different it

was

>

> from what my daughter had, I offered to leave the group.

made

>

> me feel that I was still welcome to stay around - that was in

>

> December of 2003.

>

> >

>

> >

>

> > Gail

>

> >

>

> > June was National Scoliosis Awareness Month!

>

> > Please visit http://www.scoliosi s.org/ for more information.

>

> > ************ ********* ********* ********* ********* *********

********* **

>

> > Mom to , 11/28/98 - ADHD/ODD/SID

>

> > and , 02/02/02 - Congenital Scoliosis, VATER Association

>

> (vertebral and renal anomalies), Torticollis, Klippel Feil

Syndrome,

>

> Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital

>

> 3/21/05, VEPTR Expansions: 11/05, 04/20/06 & 6/12/08; Mole (Spitz

>

> Nevus) removal: 11/26/07 & 2/11/08

>

> >

>

[Guest guest]

I just want to say that if it wasn't for this site we wouldn't know where or which dr to be going to for Toby. We drive 8 1/2 hours one way to The Children's Hospital in Denver and see an amazing dr that we wouldn't have known existed if it wasn't for this support group. But on the flip side I understand 's reasoning. I'm just afraid where we would be today if we hadn't found our dr on this site.......

Belinda, mother of Toby, 3 yrs

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> > >> >>

[Guest guest]

Sounds like you are doing just as I do...however, there are some parents out there that sit back and do nothing and seem to cause quite a stink.

If this didn't apply to you, then why did you reply so defensively?

I simply think that if you're on the group, follow the rules, or don't be part of the group. It is that simple.

I can't see how not mentioning a doctors name can be that hard..it's a respect issue.

I'm sure the docs don't mention our names in casual conversation b/c of the privacy laws that are implemented to protect us, just as has done here.

Sorry if I offended you personally, I was writing to the group as a whole and several of the parents that were personally attacking on the group.

I agree, we can all agree to disagree.

I have no hard feelings, however, I didn't appreciate the way some emails were directed.

I do think that more parents do need to step up and help ET..help w/fundraisers, spreading the word about ET to the healthcare community and their friends and families, that's why I mentioned HOPEfest, b/c I only got two responses and I think it is absolutely ridiculous to post on a CAST support group, where parents are in the same boat as us and get that small of a response.

ISOP only endorses several fundraisers a year, and we need to make them the best we possibly can.

I had 's blessing to post on the group about HOPEfest, hoping we'd generate a CAST support group sponsorship...

Have a great weekend.

Subject: Re: docs names on groupTo: infantile_scoliosis Date: Friday, July 18, 2008, 4:41 PM

Please don't insinuate that because some of us parents disagree with the new policy that we do not support ISOP and or "give something back". Now I feel like I have to justify myself: The way I personally have tried to give back is by making a monthly donation to ISOP, which I have been doing since January - it's part of my monthly budget now. My parents, in-laws, brother and sister make donations too. I organized a fundraising campaign in Isabella's name in January and sent out letters, ISOP donation slips, and self adressed stamped evelopes to all my friends, family and co-workers. I don't know how much was raised for ISOP, but I have a feeling most did mail a donation to ISOP. I contact local/regional parents via there personal email account to tell them about LLUMC. (See I can abide by the new rule - I just disagree with it). I make myself available to them 24/7 and I email them often to

check in on their children. I've driven to Los Angeles to meet in person, to hear her speak and to get a glimpse of her vision so I can help carry it out - to do my part. I did not help or donate to your HOPEfest because I already donate directly to ISOP. I do use this group as a way to vent with other parents. They are the only ones that understand. I recently sent an update on Isabella to family and friends. I opened up to them and told them what casting days are like. They had no idea. They thought it was like getting your arm casted. They didn't even know she was under anesthesia and in an OR. I vent on this group because we're all in the same situation and we can empathize with eachother. We can relate to what we are feeling and going through. When I need direction on how to help ISOP, I call and ask her what we need to do, not through CAST. I keep the two channels separate. I

vent and seek support on the group and I call directly to find out what needs to be done. She told me we needed to raise money so that's what I've been trying to do. Actaully that's on the agenda for the CA moms & dads. We've met to brainstorm on how to help ISOP. Please just don't insinuate that we do not support or are giving her a bad time. I just diagree with the policy. I do my darnest to support ISOP but I do have a right to express my opinion on a decision that does affect me and the way I will need to post from now on. I will continue to abide by the new policy as long as I remain a member of this group. Maybe we need to pull the discussion back to simply -why we agree or disagree with the new policy- and not bring anything else into the mix. Olivia> >> > I just don't get this.> > > > The CAST support group is a support group for the parents going> > through casting, per the name and description. And, yet, it appears> > that it has parlayed

into a doctor-pandering place of policing and> > censorship not at all considering the best interest of the families> > who are enduring this treatment.> > > > ISOP should have its own group, separate from the CAST support group> > if that is the problem at hand. If surgeons are so threatened by the> > voice of the patients, that's absurd. This is the information age and> > everything from yahoogroups to message boards are google-able.> > Perhaps they should reflect on what they're doing, if there is so much> > negativity and "bashing" (not my words or take on the issue) out there> > about their practice.> >>

[Guest guest]

Hi Krista,

It is nice to communicate with you again although in a very touchy topic but do not worry I have the same feeling too. If you have read my other posts you will understand what I mean like about censorship... being banned from this group, or not doing anything for the group. I am sure will clarify it. Let us just give her a break; she just celebrated her birthday...

Do not feel so bad about not being able to do anything for the group (ooopppps I hope this will not ignite another fire..LOL). I am almost in the same boat as you are thus I totally understand how it is not being able to do everything that you think you should do.

I wonder if I have ask you this before but if it is okay with you can you emailme either offline or in this group for your phone number so that we can also call you. Hopefully we all can meet again and with you being present. I wonder if we can do it near your place this time.

To the Ca "moms" (dads are welcome too) is it okay if I will try to contact you by first week of Aug? My daughter will her cast readjusted on Aug 1 so I will be on leave maybe for a week I will try find time to hear your assuring voices.

From: Olivia Salazar <onanezcsusb (DOT) edu>Subject: [infantile_scoliosi s] Re: docs names on groupTo: infantile_scoliosis @yahoogroups. comDate: Friday, July 18, 2008, 4:41 PM

Please don't insinuate that because some of us parents disagree with the new policy that we do not support ISOP and or "give something back". Now I feel like I have to justify myself: The way I personally have tried to give back is by making a monthly donation to ISOP, which I have been doing since January - it's part of my monthly budget now. My parents, in-laws, brother and sister make donations too. I organized a fundraising campaign in Isabella's name in January and sent out letters, ISOP donation slips, and self adressed stamped evelopes to all my friends, family and co-workers. I don't know how much was raised for ISOP, but I have a feeling most did mail a donation to ISOP. I contact local/regional parents via there personal email account to tell them about LLUMC. (See I can abide by the new rule - I just disagree with it). I make myself available to them 24/7 and I email them often to

check in on their children. I've driven to Los Angeles to meet in person, to hear her speak and to get a glimpse of her vision so I can help carry it out - to do my part. I did not help or donate to your HOPEfest because I already donate directly to ISOP. I do use this group as a way to vent with other parents. They are the only ones that understand. I recently sent an update on Isabella to family and friends. I opened up to them and told them what casting days are like. They had no idea. They thought it was like getting your arm casted. They didn't even know she was under anesthesia and in an OR. I vent on this group because we're all in the same situation and we can empathize with eachother. We can relate to what we are feeling and going through. When I need direction on how to help ISOP, I call and ask her what we need to do, not through CAST. I keep the two channels separate. I

vent and seek support on the group and I call directly to find out what needs to be done. She told me we needed to raise money so that's what I've been trying to do. Actaully that's on the agenda for the CA moms & dads. We've met to brainstorm on how to help ISOP. Please just don't insinuate that we do not support or are giving her a bad time. I just diagree with the policy. I do my darnest to support ISOP but I do have a right to express my opinion on a decision that does affect me and the way I will need to post from now on. I will continue to abide by the new policy as long as I remain a member of this group. Maybe we need to pull the discussion back to simply -why we agree or disagree with the new policy- and not bring anything else into the mix. Olivia> >> > I just don't get this.> > > > The CAST support group is a support group for the parents going> > through casting, per the name and description. And, yet, it appears> > that it has parlayed

into a doctor-pandering place of policing and> > censorship not at all considering the best interest of the families> > who are enduring this treatment.> > > > ISOP should have its own group, separate from the CAST support group> > if that is the problem at hand. If surgeons are so threatened by the> > voice of the patients, that's absurd. This is the information age and> > everything from yahoogroups to message boards are google-able.> > Perhaps they should reflect on what they're doing, if there is so much> > negativity and "bashing" (not my words or take on the issue) out there> > about their practice.> >>

[Guest guest]

Hi Gail,

Thanks for the info. I really did not know that this group or did you say list or do you mean ISOP or CAST is owned by one person and that is . I thought that group like this is usually created or organized by a group of people with the same needs and thus is not owned by somebody who can impose changes acording to one person's decision but if is the owner of this group by all means she has all the rights and privileges to do what she thinks is best for the group. I am so glad that we are not being charge or are required to do something before we can join this group and be able to get valuable information.

By the way how did she get to own it? Just asking no offense meant.

, thanks for not charging certain fees just to be able to get in this website.

Ethelyn

Subject: Re: Re: docs names on groupTo: infantile_scoliosis Date: Saturday, July 19, 2008, 3:09 AM

To those that are upset:

is the moderator and the owner of this list. Therfore she can set up whatever rules she feels are necessary. She has worked too long and too hard to foster goodwill with the medical community in promoting the Early Treatment of Progressive Infantile Scoliosis with the Mehta Procedure using the series of Plaster of Paris jackets to let it all slide away because someone may be upset because they can't use a dr's name. does not censor anyone's post. I have known her long enough that she would be the last person to promote censorship in any way. She is asking for discretion and respect for the medical professionals. Because while a facility may have the correct equipment to do the procedure, not all of the staff may be trained to do it.

I would be the first person to say that in treating my daughter's scoliosis there are dr's at Cincinnati Children's that I don't want near her - but there are other's I would sleep in front of their car to get her in to. The same at my children's pediatrician' s office.

I also took the time to do a little searching and see that a few of you are VERY new members (within the last 6 months or less) - so you really haven't gotten to know yet. She really is your new best friend. And she does all of this while taking care of her own child who has gone through more procedures than any child has a right too - all with a smile. , and other members of this group, will take the time to walk you through the procedure of getting your child to the right people - if you let them. I, a mother whose child doesn't have the same condition as yours, can also help. I have even met some parents at our hospital just to offer support or bring a meal or whatever. Why? Because I now know the orthopedic dept at my local Children's Hospital.

I have nothing to gain or lose by posting this. My daughter has Congenital Scoliosis - so this procedure was not an option for her; BUT I have seen the success stories and I truly believe that it does work when done properly for those children with Progressive Infantile Scoliosis.

You say you came here looking for support and information. It's there if you want it. If you don't, there are other groups - I know, I tried a bunch before I found a couple that were a fit for me. Heck, when I realized this was Infantile Scoliosis and how different it was from what my daughter had, I offered to leave the group. made me feel that I was still welcome to stay around - that was in December of 2003.

Gail

June was National Scoliosis Awareness Month!Please visit http://www.scoliosi s.org/ for more information.************ ********* ********* ********* ********* ********* ********* **Mom to , 11/28/98 - ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05, 04/20/06 & 6/12/08; Mole (Spitz Nevus) removal: 11/26/07 & 2/11/08

[Guest guest]

That MOTHER was me and at the moment I did feel like I was in a fight in the girls Junior High locker room. At that moment I couldn't exactly read into what others were having, "what seemed like", a hard time with the new rules. It seemed as if some were bashing for changing the rules. I was wrong.I am sorry if I offended ANYONE. Truly I am. I am a 40 year old woman that frequently reacts before thinking it all through....thus resulting in me acting as if I were in junior high. Unfortunately emails are SO hard to really read what the person is trying to say. You can't always hear the tone. And very often are

taken the wrong way.Anyway I think it is time like you,

Steph and

other have said for us all to agree to disagree. And to move on.I know I could not make it without the support and experiences of this group. Seasoned ones as well as new members. Everyone always has something I can learn from.~TashaMommy of twin boys- and 3 years oldFort Worth, Texas is 7.5 degrees and brace free!!!Casting 14 months and bracing 10 months

From: Olivia Salazar <onanezcsusb (DOT) edu>Subject: [infantile_scoliosi s] Re: docs names on groupTo: infantile_scoliosis @yahoogroups. comDate: Friday, July 18, 2008, 4:41 PM

Please don't insinuate that because some of us parents disagree with the new policy that we do not support ISOP and or "give something back". Now I feel like I have to justify myself: The way I personally have tried to give back is by making a monthly donation to ISOP, which I have been doing since January - it's part of my monthly budget now. My parents, in-laws, brother and sister make donations too. I organized a fundraising campaign in Isabella's name in January and sent out letters, ISOP donation slips, and self adressed stamped evelopes to all my friends, family and co-workers. I don't know how much was raised for ISOP, but I have a feeling most did mail a donation to ISOP. I contact local/regional parents via there personal email account to tell them about LLUMC. (See I can abide by the new rule - I just disagree with it). I make myself available to them 24/7 and I email them often to

check in on their children. I've driven to Los Angeles to meet in person, to hear her speak and to get a glimpse of her vision so I can help carry it out - to do my part. I did not help or donate to your HOPEfest because I already donate directly to ISOP. I do use this group as a way to vent with other parents. They are the only ones that understand. I recently sent an update on Isabella to family and friends. I opened up to them and told them what casting days are like. They had no idea. They thought it was like getting your arm casted. They didn't even know she was under anesthesia and in an OR. I vent on this group because we're all in the same situation and we can empathize with eachother. We can relate to what we are feeling and going through. When I need direction on how to help ISOP, I call and ask her what we need to do, not through CAST. I keep the two channels separate. I

vent and seek support on the group and I call directly to find out what needs to be done. She told me we needed to raise money so that's what I've been trying to do. Actaully that's on the agenda for the CA moms & dads. We've met to brainstorm on how to help ISOP. Please just don't insinuate that we do not support or are giving her a bad time. I just diagree with the policy. I do my darnest to support ISOP but I do have a right to express my opinion on a decision that does affect me and the way I will need to post from now on. I will continue to abide by the new policy as long as I remain a member of this group. Maybe we need to pull the discussion back to simply -why we agree or disagree with the new policy- and not bring anything else into the mix. Olivia> >> > I just don't get this.> > > > The CAST support group is a support group for the parents going> > through casting, per the name and description. And, yet, it appears> > that it has parlayed

into a doctor-pandering place of policing and> > censorship not at all considering the best interest of the families> > who are enduring this treatment.> > > > ISOP should have its own group, separate from the CAST support group> > if that is the problem at hand. If surgeons are so threatened by the> > voice of the patients, that's absurd. This is the information age and> > everything from yahoogroups to message boards are google-able.> > Perhaps they should reflect on what they're doing, if there is so much> > negativity and "bashing" (not my words or take on the issue) out there> > about their practice.> >>

[Guest guest]

Thank you. Let's try to have another CA get together soon. I really would love to attend. We have Jack's MRI Aug. 19th and then an appt with LLU . I sooooo hope it goes well and his curve goes down, fingers crossed! ~Krista

From: Olivia Salazar <onanezcsusb (DOT) edu>Subject: [infantile_scoliosi s] Re: docs names on groupTo: infantile_scoliosis @yahoogroups. comDate: Friday, July 18, 2008, 4:41 PM

Please don't insinuate that because some of us parents disagree with the new policy that we do not support ISOP and or "give something back". Now I feel like I have to justify myself: The way I personally have tried to give back is by making a monthly donation to ISOP, which I have been doing since January - it's part of my monthly budget now. My parents, in-laws, brother and sister make donations too. I organized a fundraising campaign in Isabella's name in January and sent out letters, ISOP donation slips, and self adressed stamped evelopes to all my friends, family and co-workers. I don't know how much was raised for ISOP, but I have a feeling most did mail a donation to ISOP. I contact local/regional parents via there personal email account to tell them about LLUMC. (See I can abide by the new rule - I just disagree with it). I make myself available to them 24/7 and I email them often to

check in on their children. I've driven to Los Angeles to meet in person, to hear her speak and to get a glimpse of her vision so I can help carry it out - to do my part. I did not help or donate to your HOPEfest because I already donate directly to ISOP. I do use this group as a way to vent with other parents. They are the only ones that understand. I recently sent an update on Isabella to family and friends. I opened up to them and told them what casting days are like. They had no idea. They thought it was like getting your arm casted. They didn't even know she was under anesthesia and in an OR. I vent on this group because we're all in the same situation and we can empathize with eachother. We can relate to what we are feeling and going through. When I need direction on how to help ISOP, I call and ask her what we need to do, not through CAST. I keep the two channels separate. I

vent and seek support on the group and I call directly to find out what needs to be done. She told me we needed to raise money so that's what I've been trying to do. Actaully that's on the agenda for the CA moms & dads. We've met to brainstorm on how to help ISOP. Please just don't insinuate that we do not support or are giving her a bad time. I just diagree with the policy. I do my darnest to support ISOP but I do have a right to express my opinion on a decision that does affect me and the way I will need to post from now on. I will continue to abide by the new policy as long as I remain a member of this group. Maybe we need to pull the discussion back to simply -why we agree or disagree with the new policy- and not bring anything else into the mix. Olivia> >> > I just don't get this.> > > > The CAST support group is a support group for the parents going> > through casting, per the name and description. And, yet, it appears> > that it has parlayed

into a doctor-pandering place of policing and> > censorship not at all considering the best interest of the families> > who are enduring this treatment.> > > > ISOP should have its own group, separate from the CAST support group> > if that is the problem at hand. If surgeons are so threatened by the> > voice of the patients, that's absurd. This is the information age and> > everything from yahoogroups to message boards are google-able.> > Perhaps they should reflect on what they're doing, if there is so much> > negativity and "bashing" (not my words or take on the issue) out there> > about their practice.>

>>

[Guest guest]

Thanks for that. These are tough times and we all need each other. I can get a little saucy too..or so I've been told. No worries. Hang in. ~Krista

From: Olivia Salazar <onanezcsusb (DOT) edu>Subject: [infantile_scoliosi s] Re: docs names on groupTo: infantile_scoliosis @yahoogroups. comDate: Friday, July 18, 2008, 4:41 PM

Please don't insinuate that because some of us parents disagree with the new policy that we do not support ISOP and or "give something back". Now I feel like I have to justify myself: The way I personally have tried to give back is by making a monthly donation to ISOP, which I have been doing since January - it's part of my monthly budget now. My parents, in-laws, brother and sister make donations too. I organized a fundraising campaign in Isabella's name in January and sent out letters, ISOP donation slips, and self adressed stamped evelopes to all my friends, family and co-workers. I don't know how much was raised for ISOP, but I have a feeling most did mail a donation to ISOP. I contact local/regional parents via there personal email account to tell them about LLUMC. (See I can abide by the new rule - I just disagree with it). I make myself available to them 24/7 and I email them often to

check in on their children. I've driven to Los Angeles to meet in person, to hear her speak and to get a glimpse of her vision so I can help carry it out - to do my part. I did not help or donate to your HOPEfest because I already donate directly to ISOP. I do use this group as a way to vent with other parents. They are the only ones that understand. I recently sent an update on Isabella to family and friends. I opened up to them and told them what casting days are like. They had no idea. They thought it was like getting your arm casted. They didn't even know she was under anesthesia and in an OR. I vent on this group because we're all in the same situation and we can empathize with eachother. We can relate to what we are feeling and going through. When I need direction on how to help ISOP, I call and ask her what we need to do, not through CAST. I keep the two channels separate. I

vent and seek support on the group and I call directly to find out what needs to be done. She told me we needed to raise money so that's what I've been trying to do. Actaully that's on the agenda for the CA moms & dads. We've met to brainstorm on how to help ISOP. Please just don't insinuate that we do not support or are giving her a bad time. I just diagree with the policy. I do my darnest to support ISOP but I do have a right to express my opinion on a decision that does affect me and the way I will need to post from now on. I will continue to abide by the new policy as long as I remain a member of this group. Maybe we need to pull the discussion back to simply -why we agree or disagree with the new policy- and not bring anything else into the mix. Olivia> >> > I just don't get this.> > > > The CAST support group is a support group for the parents going> > through casting, per the name and description. And, yet, it appears> > that it has parlayed

into a doctor-pandering place of policing and> > censorship not at all considering the best interest of the families> > who are enduring this treatment.> > > > ISOP should have its own group, separate from the CAST support group> > if that is the problem at hand. If surgeons are so threatened by the> > voice of the patients, that's absurd. This is the information age and> > everything from yahoogroups to message boards are google-able.> > Perhaps they should reflect on what they're doing, if there is so much> > negativity and "bashing" (not my words or take on the issue) out there> > about their practice.>

>>

[Guest guest]

Wow, I missed so much in 5 days. I support you

100% hang in there!

E

From:

infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of

Sent: Friday, July 18, 2008 2:11 PM

To: infantile_scoliosis

Subject: Re: Re: docs names on group

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?

Subject: Re: Re: docs names on group

To: 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 of

removal from the group? Alienating the parents who are going through

it doesn't benefit anyone. If parents cannot trust that they are

getting the most objective information, going into this treatment, is

that 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 my

cast 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 a

yahoo 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 being

said on the group, maybe they need to figure out WHY people have been

saying 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. Why

should CAST - the parent support group for CASTING protect THEM when

it'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

what

it being said and no other child will not receive the crucial

treatment they need.

[Guest guest]

GROUP HUG!

I have not had time to keep up with all these posts, but I just wanted

to voice an opinion here. I think everyone has everyone else's best

interest at heart. Sometimes things just get messy in friendships,

but hopefully, that will make our friendships deeper (I read this

great article on rupture & repair..often a cycle of relationships).

We may not all agree, but I consider passionate moms that care about

their children like I care about my ...all friends. The people

on here have been a God-send to me with my son, as so has our fearless

leader , whom I owe so much.

Much love & respect,

, mom to

P.S. - I think I had e-mailed you that my sister (et al) lives

in Reston and is willing to help you out with HOPEfest. Please let me

know what I else can do personally (e-mail me personally please), as I

have not been keeping up with these e-mails as there are just too many.

Olivia - let me know when you have a minute to chat this week or just

give me a call, so we can organize our next meeting. Miss you guys!

> > >

> > > I just don't get this.

> > >

> > > The CAST support group is a support group for the parents going

> > > through casting, per the name and description. And, yet, it

> appears

> > > that it has parlayed into a doctor-pandering place of policing and

> > > censorship not at all considering the best interest of the

> families

> > > who are enduring this treatment.

> > >

> > > ISOP should have its own group, separate from the CAST support

> group

> > > if that is the problem at hand. If surgeons are so threatened by

> the

> > > voice of the patients, that's absurd. This is the information age

> and

> > > everything from yahoogroups to message boards are google-able.

> > > Perhaps they should reflect on what they're doing, if there is so

> much

> > > negativity and " bashing " (not my words or take on the issue) out

> there

> > > about their practice.

> > >

> >

>

[Guest guest]

I

hope this post will get through.

**No

reason to hold this back…..(?)

HRH

[infantile_scoliosi s] Re: docs names on group

To: infantile_scoliosis @yahoogroups. com

Date: Friday, July 18, 2008, 4:41 PM

Please don't insinuate that because some of us

parents disagree with

the new policy that we do not support ISOP and or " give

something back " . Now I feel like I have to justify myself: The way I

personally have tried to give back is by making a monthly donation to

ISOP, which I have been doing since January - it's part of my monthly

budget now. My parents, in-laws, brother and sister make donations

too. I organized a fundraising campaign in Isabella's name in January

and sent out letters, ISOP donation slips, and self adressed stamped

evelopes to all my friends, family and co-workers. I don't know how

much was raised for ISOP, but I have a feeling most did mail a

donation to ISOP. I contact local/regional parents via there personal

email account to tell them about LLUMC. (See I can abide by the new

rule - I just disagree with it). I make myself available to them 24/7

and I email them often to check in on their children. I've driven to

Los Angeles to meet in person, to hear her speak and

to get a

glimpse of her vision so I can help carry it out - to do my part. I

did not help or donate to your HOPEfest because I already donate

directly to ISOP. I do use this group as a way to vent with other

parents. They are the only ones that understand. I recently sent an

update on Isabella to family and friends. I opened up to them and

told them what casting days are like. They had no idea. They thought

it was like getting your arm casted. They didn't even know she was

under anesthesia and in an OR. I vent on this group because we're

all in the same situation and we can empathize with eachother. We can

relate to what we are feeling and going through. When I need

direction on how to help ISOP, I call and ask her what we

need to do, not through CAST. I keep the two channels separate. I

vent and seek support on the group and I call directly to

find out what needs to be done. She told me we needed to raise money

so that's what I've been trying to do. Actaully that's on the agenda

for the CA moms & dads. We've met to brainstorm on how to help ISOP.

Please just don't insinuate that we do not support or are

giving her a bad time. I just diagree with the policy. I do my

darnest to support ISOP but I do have a right to express my opinion

on a decision that does affect me and the way I will need to post

from now on. I will continue to abide by the new policy as long as I

remain a member of this group. Maybe we need to pull the discussion

back to simply -why we agree or disagree with the new policy- and not

bring anything else into the mix.

Olivia

> >

> > I just don't get this.

> >

> > The CAST support group is a support group for the parents going

> > through casting, per the name and description. And, yet, it

appears

> > that it has parlayed into a doctor-pandering place of policing

and

> > censorship not at all considering the best interest of the

families

> > who are enduring this treatment.

> >

> > ISOP should have its own group, separate from the CAST support

group

> > if that is the problem at hand. If surgeons are so threatened by

the

> > voice of the patients, that's absurd. This is the information age

and

> > everything from yahoogroups to message boards are google-able.

> > Perhaps they should reflect on what they're doing, if there is so

much

> > negativity and " bashing " (not my words or take on the

issue) out

there

> > about their practice.

> >

>

[Guest guest]

if you read the following post this explains why members are

asked to refrain from using docs names. You can say the hospital but

not the docs name.

Darrell

> >

> > 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

> >

>

[Guest guest]

Thanks, Darrell.

I wasn't sure how to answer a question that someone else had asked

where the docs name was already mentioned.

In any event, it must be quite a task for & co. to keep those

names out of the posts because they sort of come up in the natural

course on any forum - but I can certainly understand why the rule is

in place and more importantly will be happy to abide by it.

> > >

> > > 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

> > >

> >

>

[Guest guest]

Thanks

, Darrell & entire group!

I appreciate your help/support on this

sensitive issue, while we were away.

HRH

Re:

docs names on group

if you read the

following post this explains why members are

asked to refrain from using docs names. You can say the hospital but

not the docs name.

Darrell

> >

> > 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

> >

>

[Guest guest]

Hi ,

I'm so glad Olivia is doing well. I have been following the posts

here regarding her these past week(s) and you guys have been in my

thoughts daily.

Best,

> > >

> > > 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

> > >

> >

>