Re: rachel@...

[Guest guest]

I'm sure everyone on this list appreciates your opinion...but you can drop the sarcasm..We are all trying to advocate for our children, so for you to state that our job is not to torture them is a little over the top.

I welcome your opinions, but not your attitude.

What makes you an expert on serial corrective plaster casts? Has your child ever had one?

Who do you think you are talking to? We all realize that a child in a cast cant be immersed in water..

This is NOT a permanent cast..Sometimes the serial corrective casts only need to be worn for a year..These casts are applied every 2 to 3 months depending on the weather and the child. Its NOT the same cast forever.

My daughter Olivia only wears a cast in the winter. She is free to swim and do everything a typical child can in her cast, except a summersault.

Who in the world told you that casts cause sores, and stink? Thats untrue. A plaster cast applied correctly wont cause sores.! No more than a brace would..Actually a cast can be more comfortable than a rigid fiberglass/plastic brace according to the families that have experienced both. Feel free to ask parents on this list about that. Not to mention my daughter Olivia can talk, and she also says that the cast is more comfortable..( a plaster cast can breathe with the childs body, a brace cant).

The infants/young children that have infantile scoliosis,(NOT congenital), that have been caught early can be corrected by casts..That is NOT true with bracing. Braces dont correct scoliosis in small infants/children. They may hold off curve progression for a while, but thats it. That next growth spurt in most all cases, will cause the curve to continue to progress. If your child has had such great success with the brace, please enlighten us on which one..I'm sure other moms on this list would be interested...I am too, because my daughter will be in braces for the next 8 yrs, ( hopefully.)

Who says that the moms on this list have NOT looked into other options..? Do you even know what the options are for infantile cases?

The option that we are given is to "Wait and See," how big the curve gets until surgery..Well surgery has also been proven to be of no significant benefit to these tiny, underdeveloped infants and children..Not only does it NOT reduce the deformity, but causes pulmonary function problems, as well.

It is my opinion, that infantile cases have been thrown into the congenital pool.! Infantile scoliosis is NOT a structural problem..These curves caught early and treated early can be corrected with serial corrective plaster casts, NOT inexpensive, ineffective little braces, then surgery!

Now if you had a baby with infantile that was caught early, wouldnt you try the plaster cast method before surgery? When you know that it has the potential to straighten your baby, and the braces dont. Why have your child in braces, casts to maintain, and surgery its entire childhood, when you have a shot at straightening the curve while the child is tiny.? Its the same theory as braces on teeth.

If you were informed and had done research yourself, you wouldnt have written such an ignorant e-mail. Did you even read the website, before you put your two cents in?

I have been doing research on my daughters condition for 5 yrs..This research has spanned the globe, not just the United States. Sometimes the answer is elshere.

The Infantile Scoliosis Outreach program will help conduct/direct the first ever, long over due research study on the effects/benefits of early treatment with serial corrective plaster casts. We have docs form all over the U.S., that are eager to participate in this study..Now, if what we are advocating is not true, I doubt these docs would take the time to participate in this study. Think about it..

No one said surgery is terrible! Some children need it for survival (mostly congenital cases)...But some dont (infantile), and thats what needs to change. I do think surgery is bad, when there are other options that werent explored. Every single child is inherently different.

I agree with the first part of the last statement you made in your e-mail;

"I hope you all find what is best for your child but please dont stop here , keep looking and see the world beyond a group of girlfriends."

You should take your own advice and see/research the world beyond the United States. The world is a big place, and there ARE other countries that have outstanding, superior treatments for all different types of conditions.

I hope you can open your mind a little to learn more about this condition. Im sure your child would benefit.

I would love to send you the video and some pertinent info for free, so you can see what we are all talking about..Then maybe we can have some productive conversation.

Peace,

[Guest guest]

Thanks !

I wasn't quite sure where that attack came from!!

I wish negative people would stay at those other negative boards!

We leave for SLC on the 20th but gets a cast on the 22nd so that is the day to light a candle. That is sweet, Thanks.

[Guest guest]

I am curious as to the age and severity of s child. Is it Infantile or Congenital?

Also...you cannot brace a baby!!!!!!!!!! We have seen 4 Dr.'s and every one agrees that you can't brace an infant. And why do surgery when you could possibly cure your child with a cast. I will never put my son through surgery until he is almost done growing unless it is life threatening. Fusing the spine is not an option for us, his little lungs and heart would outgrow his trunk. And growing rods..going in every 6 months for surgery to adjust the rods doesn't sound like something I would want to do for my son, the nerve damage possibility is frightening. I really do think that everyone is entitled to their opinion but please be nice about it. We aren't just a group of girlfriends, we are a group of Mom's that have a major thing in common, we are trying to find a cure for our children. Thanks.

[Guest guest]

I posted this after I had a appointment with my doctor and these are the things he said I have not had a cast but I thought I was giving you the benefit of the doubt because I have never had a cast that is why I asked my doctor so I could understand why you all are so passionate. I do not understand, but I stand corrected, my thoughts where base on those of a surgeon I was not thinking properly and was misinformed. I apologies for upsetting you all but I do feel like you could as a group support other options for scoliosis.

I appreciate your fire and spunk as a mom who truly believes what you chose for you child. Again I stand correct and truly am sorry.

~Rach

Re: Re: rachel@...

I'm sure everyone on this list appreciates your opinion...but you can drop the sarcasm..We are all trying to advocate for our children, so for you to state that our job is not to torture them is a little over the top.I welcome your opinions, but not your attitude.What makes you an expert on serial corrective plaster casts? Has your child ever had one? Who do you think you are talking to? We all realize that a child in a cast cant be immersed in water..This is NOT a permanent cast..Sometimes the serial corrective casts only need to be worn for a year..These casts are applied every 2 to 3 months depending on the weather and the child. Its NOT the same cast forever.My daughter Olivia only wears a cast in the winter. She is free to swim and do everything a typical child can in her cast, except a summersault.Who in the world told you that casts cause sores, and stink? Thats untrue. A plaster cast applied correctly wont cause sores.! No more than a brace would..Actually a cast can be more comfortable than a rigid fiberglass/plastic brace according to the families that have experienced both. Feel free to ask parents on this list about that. Not to mention my daughter Olivia can talk, and she also says that the cast is more comfortable..( a plaster cast can breathe with the childs body, a brace cant).The infants/young children that have infantile scoliosis,(NOT congenital), that have been caught early can be corrected by casts..That is NOT true with bracing. Braces dont correct scoliosis in small infants/children. They may hold off curve progression for a while, but thats it. That next growth spurt in most all cases, will cause the curve to continue to progress. If your child has had such great success with the brace, please enlighten us on which one..I'm sure other moms on this list would be interested...I am too, because my daughter will be in braces for the next 8 yrs, ( hopefully.)Who says that the moms on this list have NOT looked into other options..? Do you even know what the options are for infantile cases?The option that we are given is to "Wait and See," how big the curve gets until surgery..Well surgery has also been proven to be of no significant benefit to these tiny, underdeveloped infants and children..Not only does it NOT reduce the deformity, but causes pulmonary function problems, as well.It is my opinion, that infantile cases have been thrown into the congenital pool.! Infantile scoliosis is NOT a structural problem..These curves caught early and treated early can be corrected with serial corrective plaster casts, NOT inexpensive, ineffective little braces, then surgery!Now if you had a baby with infantile that was caught early, wouldnt you try the plaster cast method before surgery? When you know that it has the potential to straighten your baby, and the braces dont. Why have your child in braces, casts to maintain, and surgery its entire childhood, when you have a shot at straightening the curve while the child is tiny.? Its the same theory as braces on teeth.If you were informed and had done research yourself, you wouldnt have written such an ignorant e-mail. Did you even read the website, before you put your two cents in?I have been doing research on my daughters condition for 5 yrs..This research has spanned the globe, not just the United States. Sometimes the answer is elshere.The Infantile Scoliosis Outreach program will help conduct/direct the first ever, long over due research study on the effects/benefits of early treatment with serial corrective plaster casts. We have docs form all over the U.S., that are eager to participate in this study..Now, if what we are advocating is not true, I doubt these docs would take the time to participate in this study. Think about it..No one said surgery is terrible! Some children need it for survival (mostly congenital cases)...But some dont (infantile), and thats what needs to change. I do think surgery is bad, when there are other options that werent explored. Every single child is inherently different.I agree with the first part of the last statement you made in your e-mail;"I hope you all find what is best for your child but please dont stop here , keep looking and see the world beyond a group of girlfriends."You should take your own advice and see/research the world beyond the United States. The world is a big place, and there ARE other countries that have outstanding, superior treatments for all different types of conditions.I hope you can open your mind a little to learn more about this condition. Im sure your child would benefit.I would love to send you the video and some pertinent info for free, so you can see what we are all talking about..Then maybe we can have some productive conversation. Peace,

[Guest guest]

I am not a negitive person and have kept to myself for the most part, but just as you, there are things we all feel passionate about.

Re: Re: rachel@...

Thanks !

I wasn't quite sure where that attack came from!!

I wish negative people would stay at those other negative boards!

We leave for SLC on the 20th but gets a cast on the 22nd so that is the day to light a candle. That is sweet, Thanks.

[Guest guest]

You can brace a baby mine was at 3 months. I agree we are mom's trying to find a cure for our child but casting is not the only option. This is what I would like you to remember, I should of done the same and kept my thoughts to myself.

Re: Re: rachel@...

I am curious as to the age and severity of s child. Is it Infantile or Congenital?

Also...you cannot brace a baby!!!!!!!!!! We have seen 4 Dr.'s and every one agrees that you can't brace an infant. And why do surgery when you could possibly cure your child with a cast. I will never put my son through surgery until he is almost done growing unless it is life threatening. Fusing the spine is not an option for us, his little lungs and heart would outgrow his trunk. And growing rods..going in every 6 months for surgery to adjust the rods doesn't sound like something I would want to do for my son, the nerve damage possibility is frightening. I really do think that everyone is entitled to their opinion but please be nice about it. We aren't just a group of girlfriends, we are a group of Mom's that have a major thing in common, we are trying to find a cure for our children. Thanks.

[Guest guest]

,

Apology accepted.

Now, can I send the video at no cost so you can at least see what we are talking about..?

You know, Madelines docs response does not suprise me at all. Most of the moms on the list will agree that that was the response their childs doc gave, too.!!

What baffles me is that these docs have never applied plaster, so how the heck would they know? And if they have applied plaster, it was only as a last ditch effort at maintence, or to restrain movement after a surgery. NEVER have they applied plaster to an infant/young child immediately like they should..

The treatment of infants/young children that are affected by INFANTILE scoliosis must change..Like I said, INFANTILE is different from CONGENITAL. Children with infantile DO NOT have any structural anomolies. They do NOT need surgery right away, unless the curve is at such a high degree that internal organs are in jeopardy, and even then, there are other non surgical ways to get the curve down to buy the child more growing/development time. That is not always the case with congenital..Congenital is a bit more complicated than infantile.

Anyway, I am certainely not an expert on congenital.

As far as looking into other options for INFANTILE cases...like I said...my research has spanned the globe, not just the good ol' U.S.A. Currently, I am researching Japan.

So far, in my quest for the most superior treatment for infantile scoliosis, I have found that its serial corrective plaster casts applied early, then the Titanium Rib, and last but not least growing rods. Recently(may 2003), I had a conversation with the former pres. of the National Scoliosis Research Society, and he concurred/agreed. Although, 4 yrs ago, he didnt agree with a word I said...Funny how some docs ego's can be the size of Texas..If they didnt come up with it, it doesnt exist, or doesnt work.

Thanks for getting us all going yesterday , LOL. I invite all opinions/contraversy...Lets all just try to support eachother.

I know that you have been through a lot with your precious girl. I know that you can help others with similar experiences..Many of us have no idea what the future holds for our children, and are scared..

Lets keep open dialogue so we can help eachother..

And if you would like to add any research documents or pictures to the group, please do.

Sincerely,

[Guest guest]

Just set a time frame for everyone to meet in there. Then just click

on it and chat away! Simple

> I had no idea Madeline was getting the titanium rib implant today

>

> Oops, Olivia just got up, so I guess I dont have time to chat. I

was going

> to try the " chat room, " .

>

> any ideas on how to get that going?

>

> heather