celia

[Guest guest]

You and your friend's family are in my prayers. Also wanted to thankyou for the article, I have forwarded it several people.

God Bless us All

AIH 01/01

[Guest guest]

are you in B.C.?

[Guest guest]

What a great story Celia, Thank you!! I am crying again between you

and Antonia's stories. These are good tears though. How many casts

was your daughter in and did they stop casting at 13 degrees??

I would love to hear more. Where are you in Canada? Who was your

Dr. and where is he located?

Crista

[Guest guest]

Deirdre is currently in her fifth cast. She will go into another one

in March. Hopefully it will be the last one. My daughter's doctor

is Dr. Hedden (one really remarkable doctor !!!) He doesn't use a

traction table to get her straight. He uses his hands !!! I am

currently looking into braces. I have read really good things about

the spinecor brace. The only problem may be that she is too young to

go into this brace. Also, after 2 1/2 years of casting I don't know

if such a brace is too flexible for her. Her muscles may not be

strong enough for it. This brace was developed by a doctor in

Montreal by the name of Dr. Rivard. They have a wonderful website

www.spinecorporation.com ( I think that's it ) Anyway, I really hope

Deirdre will be one of the success stories. I still don't feel as if

I've conquered this yet.

Celia

[Guest guest]

No, I'm in Toronto. My daughter goes to Sick Kid's

Celia

[Guest guest]

Thanks for sharing your story Celia.

I am very happy that Diedre is doing well.

heather

[Guest guest]

Yeah, I am sure it is fused. We had 3 Dr.'s all say it is a fused rib. If you look at his pictures you can kind of see it on the picture that he is standing up in. Just wanted to see if maybe you went through that also. I am trying not to over-worry but I am way too over-worried these days. I have dreams every night about plaster casts.

[Guest guest]

Hi Crista,

Deirdre had rotation at first checkup of 20 to 25 degrees (which is

pretty advanced) with a 60 degree curve. Two weeks later, just

before the cast was applied, her curve had already progressed to 68.

I don't know what the rotation was at that point. Today, there is

very little rotation. Also, you would have to look very closely to

see a bulge on her left side. Also, the concave side of her back is

filling out quite nicely. She is looking more normal. It's not an

easy decision to make - to cast a child - but you know what ? I have

never looked back with regret.

I hate to think where my daughter would be today if we had not cast

her. Some may say that she would have corrected with a brace. That

may be true. But I didn't want to take any chances. I have heard so

many stories of parents running after their kids trying to get those

braces on. I have also read that some children can't tolerate the

braces -- they are very, very tight. Deirdre has tolerated her cast

VERY WELL. The only time there seems to be some discomfort are the

two very hot weeks in July when her skin perspires and there is a

little bit of a smell. But that disappears with the cool weather.

Her cast is the underarm variety (it's fibreglass ... I know

has very strong opinions about this !!! But hey, everyone is entitled

to their own opinion. I also know Min Mehta prefers the plaster

variety) With her clothing on, you can't even tell she is wearing

one.

Celia

- In infantile scoliosis treatment , " cristab1 " <cristab@a...>

wrote:

> Hi Celia,

> Did your daughter have any rotation in her spine as well as

> Scoliosis?

> Crista

[Guest guest]

Gosh Crista are you sure he has a fused rib ??? I don't think

Deirdre ever got to that point. At least it was never mentioned to

me. I've seen her x-rays and all her ribs seem fine I'm not a

doctor, I don't know what the implication of that is. Your doctor

just brushed it off as cosmetic???? You should get an answer on that

next week when you get casted. Don't over worry yourself

though !!! Maybe its a minor thing and easily corrected.

Celia

> Did Deidra have a rib fusion by any chance as well? has

> fused ribs and so far the Dr.'s hace acted like it is just

> cosmetic. His fusion is on the right and he has a left Thoracic

> curve. It seems to me that the fusion would pull him over to the

> right, which would make his spine curve to the left.

[Guest guest]

Hi Celia, do you have any picture of her in her cast to show everyone. We would like to see her.

,Bridgette

Re: Celia

Hi Crista,Deirdre had rotation at first checkup of 20 to 25 degrees (which is pretty advanced) with a 60 degree curve. Two weeks later, just before the cast was applied, her curve had already progressed to 68. I don't know what the rotation was at that point. Today, there is very little rotation. Also, you would have to look very closely to see a bulge on her left side. Also, the concave side of her back is filling out quite nicely. She is looking more normal. It's not an easy decision to make - to cast a child - but you know what ? I have never looked back with regret. I hate to think where my daughter would be today if we had not cast her. Some may say that she would have corrected with a brace. That may be true. But I didn't want to take any chances. I have heard so many stories of parents running after their kids trying to get those braces on. I have also read that some children can't tolerate the braces -- they are very, very tight. Deirdre has tolerated her cast VERY WELL. The only time there seems to be some discomfort are the two very hot weeks in July when her skin perspires and there is a little bit of a smell. But that disappears with the cool weather. Her cast is the underarm variety (it's fibreglass ... I know has very strong opinions about this !!! But hey, everyone is entitled to their own opinion. I also know Min Mehta prefers the plaster variety) With her clothing on, you can't even tell she is wearing one. Celia- In infantile scoliosis treatment , "cristab1" <cristab@a...> wrote:> Hi Celia,> Did your daughter have any rotation in her spine as well as > Scoliosis?> Crista

[Guest guest]

Crista,

You have dreams every night about plaster casts ??? Are they good

dreams or bad dreams ??? ... just kidding. I know it is an anxious

time for you. I know when I was waiting to have Deirdre fitted with

her first cast that it seemed to take soooo long. I couldn't

understand why they couldn't have scheduled her sooner. Anyway, the

day will come ... and I know it will be a BIG relief for you.

Regarding the fused rib, I don't know if anyone else in this group

has had this problem. If so, enlighten us. I have read that once

ribs are cut, they do grow back. Any comments from anyone else on

this ???? I

Celia

> Yeah, I am sure it is fused. We had 3 Dr.'s all say it is a fused

rib. If

> you look at his pictures you can kind of see it on the picture that

he is

> standing up in. Just wanted to see if maybe you went through that

also. I am

> trying not to over-worry but I am way too over-worried these days.

I have dreams

> every night about plaster casts.

[Guest guest]

Yes. The last time she was x-rayed which was Nov 11, she was at 13

degrees. I'm hoping with the next cast change to get a better

correction. The last time she had her cast off, she had the same

degree curvature.

Celia

> Did you say that your daughter is at 13 degrees with a cast still

on?

[Guest guest]

Hi Bridgette,

I read your story and the results are quite amazing. Deirdre did not

have that kind of correction with her first cast. The only time she

finally got below twenty degrees (stand-up x-ray) was six or seven

months into the treatment. Before that she was always around 35

degrees (stand-up x-ray). Yes I will try to take some pictures of

Deirdre with her current cast. Though I'm not sure how successful

I'll be posting it onto the message board !!!

Celia

> > Hi Celia,

> > Did your daughter have any rotation in her spine as well as

> > Scoliosis?

> > Crista

>

>

>

[Guest guest]

Hi Crista,

I don't have any recent photograhs of her with just the cast on. I

do have photographs with clothing on. I'll try to post those.

I'll send them to , if I have trouble. I will try to take a

few with just the cast on this weekend.

Celia

> Hi Celia,

> Do you have a picture of your daughter that you could post with the

> other kids? I would love to see a picture of her!

> Crista

[Guest guest]

Celia,

I think pressing on the convex side of her curve is great combined with what little you can massage..

Any relief you can provide to her little back and muscles, is so needed..

I do the same with my girl,

You cant do much when theyre in their casts, but what little you can do is some relief, I'm sure.

keep up the good work Celia

and thanks again for posting pictures and joining the group...Like I said, not many families have been through this out here, so your knowlege is invaluable to many on this support group.

talk soon,

[Guest guest]

Thank you!!

[Guest guest]

I'm not sure. I've never had to get medical help outside of

Canada. I'll phone OHIP tomorrow and find out for you.

Celia

> Can a US citizen come to Canada to see a Dr. there? I know you are

> socialized medicine so I doubt insurance would pay for it? But if

I

> paid for the services would they see us? Does that make sense???

[Guest guest]

--- Christa

I've just read your email about trying to come to Canada for

treatment, and I've had a thought.....

While I was trying to find someone to cast Siobhan, I spoke to a Dr

Rivard who believes in casting, (Celia has heard of him too!). He

works out of a hospital in Montreal (St e's) AND the Montreal

Shriners. He suggested I find a way to get to him to get Siobhan

casted, but we ended going to Dr D'Astous (a long story!).

Anyway, if he would agree to at least see , then you could go

through Shriner's there?

I'm not sure if thats helpful or not, but it can't help to try all

routes eh?

Jacki

In infantile scoliosis treatment , " celia_vogel "

<celia_vogel@y...> wrote:

> I'm not sure. I've never had to get medical help outside of

> Canada. I'll phone OHIP tomorrow and find out for you.

>

>

>

> Celia

>

>

>

> > Can a US citizen come to Canada to see a Dr. there? I know you

are

> > socialized medicine so I doubt insurance would pay for it? But

if

> I

> > paid for the services would they see us? Does that make sense???

[Guest guest]

Jacki,

Thanks alot! Do you have pics of Siobhan in her cast? I love Dr. D'Astous don't get me wrong, I just can't handle the neck support on the cast. Did Siobhan ever have that? I need pics of kids in casts to take to Dr. D'Astous. We go back March 9th.

Crista

I will keep that Dr.'s name, Thanks.

[Guest guest]

Celia,

I am the Exec. Director of the Infantile Scoliosis Outreach Program (I.S.O.P.).

Our Mission,

To improve the standard of knowledge, means of prevention, diagnosis and treatment of infantile scoliosis.

[Guest guest]

Celia,

Once again, I am little confused about your last e-mail?

No one is questioning the credibility of Moskovich, especially me..I have nothing but praise, admiration and respect for docs that apply serial corrective casts..

I said that I was curious about Moskovich, and I am. No one that I have come across in my 5 yrs of research has ever gotten casted by Moskovich. When I say I am curious about him, I mean it...There are never any hidden messages in my posts. I dont work that way.

Anyway, the reason I feel the need to respond to your e-mail is that I dont want anyone to be mislead by it.

Celia, do you really think that I.S.O.P. would discount the work of Moskovich due to a conversation that Crista had with his secretary? How much sense would that make when I.S.O.P. is working so hard to make this treatment available to infants/young children across the states and Canada?

You state that are many many people out there who have been treated by Moskovich , and are now straight. Would you mind sharing your info on Moskovich and how many he has straightened? Thats info I have been requesting from parents and docs for years, now.

I mention every week that I.S.O.P. needs testimonials. If you have access to Moskovich, why dont you find out some of this stuff for us? Instead of assuming that I.S.O.P. is not interested...

A suggestion,

When you respond to a post from me, read it a few times before you go off with your exclamation points or assumptions..

This group is for parents seeking out the best treatments for their infants/children..The environment of this group must stay positive and understanding.

thanks,

[Guest guest]

Celia,

Once again, I am little confused about your last e-mail?

No one is questioning the credibility of Moskovich, especially me..I have nothing but praise, admiration and respect for docs that apply serial corrective casts..

I said that I was curious about Moskovich, and I am. No one that I have come across in my 5 yrs of research has ever gotten casted by Moskovich. When I say I am curious about him, I mean it...There are never any hidden messages in my posts. I dont work that way.

Anyway, the reason I feel the need to respond to your e-mail is that I dont want anyone to be mislead by it.

Celia, do you really think that I.S.O.P. would discount the work of Moskovich due to a conversation that Crista had with his secretary? How much sense would that make when I.S.O.P. is working so hard to make this treatment available to infants/young children across the states and Canada?

You state that are many many people out there who have been treated by Moskovich , and are now straight. Would you mind sharing your info on Moskovich and how many he has straightened? Thats info I have been requesting from parents and docs for years, now.

I mention every week that I.S.O.P. needs testimonials. If you have access to Moskovich, why dont you find out some of this stuff for us? Instead of assuming that I.S.O.P. is not interested...

A suggestion,

When you respond to a post from me, read it a few times before you go off with your exclamation points or assumptions..

This group is for parents seeking out the best treatments for their infants/children..The environment of this group must stay positive and understanding.

thanks,

[Guest guest]

>

> No one is questioning the credibility of Moskovich, especially

me..I have

> nothing but praise, admiration and respect for docs that apply

serial corrective

> casts.. Celia, do you really think that I.S.O.P. would discount the

work of Moskovich

> due to a conversation that Crista had with his secretary? How much

sense

> would that make when I.S.O.P. is working so hard to make this

treatment available

> to infants/young children across the states and Canada?

>

I'm really happy to hear you say that . This is a doctor who

is doing amazing work.

Celia

[Guest guest]

Celia,

By research, I do NOT mean people that contact me through infantilescoliosis.com

Have you even read infantilescoliosis.com? The site should give you an idea on how much research I've done. Just the basic, starting 5 yrs ago..Remember, Olivia is 6yrs old, now.

-!st I started on the web,

-then the libraries (public and medical),

-communicated with ALL scoli orgs I could find, here and abroad

-communicated with numerous docs in the states, too many to mention

-then began communicating with docs abroad, such as McMaster, Dubousset, Webb, Dickson, Mehta, just to name a few.

The lack of research on the effects of early treatment with serial sorrective plaster casts for progressive infantile scoliosis is very hard to find..That is why the group was started.

I.S.O.P.'s first major effort in getting the word out, and making early treatment with serial corrective plaster casts available in the U.S. and Canada, is to organize an educational seminar in SLC on the effects of this superior treatment. We hope to bring Dr. Mehta here soon, to direct/conduct this long over due project, with doctors that we are gathering right now. ( Moskovich is on our invitation list. I even sent him a video a year ago.)

I am developing a patient list of the infants/young children that may get to be a part of this early treatment trial.

Now, to respond to your suggestion that members of the C.A.S.T. can purchase their videos from Arise. Celia, I.S.O.P. has an arrangement with our sister org Arise to distribute these videos. Videos from Europe cannot be viewed here unless their format is transferred to american, and vice versa.

Getting the videos from I.S.O.P. saves parents time and money. For a parent to get only 1 video from Arise, and then have to pay for the transfer of only 1 video, the cost is outrageous. Out here in Colorado, the video transferring company charges $25.00 for 1 video, then you have to wait 2 weeks.

It is a lot more practical for I.S.O.P. to mass transfer the videos for a lower price...Anyway, all proceeds go directly back to Arise..I.S.O.P does not profit from this, at all.

As the moderator/owner of this group I am asking that you do not make that suggestion again..It doesnt benefit parents to pay more and wait longet for the video..Time is critical in many of these situations. If the parents are from Europe than your suggestion would be practical.

Now to respond to this mornings e-mail.

I think that you are the only one in the group that thinks that I have insulted Moskovich. The truth is, I want to get to know his work..I cant wait to hear from parents that have had their children casted by him. If anyone else was offended by me saying that I havent come in contact with anyone he has casted, I dont know what to say..It was never meant as an insult to his work..I am truly curious, thats all..

Celia, why are you so sarcastic?

My "grand plan," of patient tracking was at the request of I.S.O.P.'s Board, and Dr. Mehta.

When I want your advice Celia, I will ask for it. Other than that, I dont appreciate it.

Please try and be useful with all of your energy.

[Guest guest]

No Celia,

It was the wonderful doctor before him.

HRH