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Ciundy,

Thanks! It's definitely better than last time I had it, and am in

better spirits now. Having the newspaper come to talk about

's plagio was a good distraction today! They are doing the

article on plagio (not a blip in a " back to sleep " article) and it

may be in the paper this weekend - that was her original intention,

but after speak to me today, she said she wants to visit CT with us

for 's next DOCband adjustment (next week). She has to clear

it with her editor though. I can't wait to see the final article!

Kerri

> In a message dated 6/10/2003 10:18:41 PM Eastern Daylight Time,

> wolfekm@h... writes:

>

> > I spent most of Sunday evening feeling sorry for myself

> > :-O so now I'm just resigned to be patient and see what happens!

> >

>

> Sorry to hear that! I hope just as with plagio, you can attack it

full

> throttle with education and patience (ug! right?!), but hopefully

this will pass

> and will be nothing but a distant memory! I know how you feel on

the why me

> deal, I got shingles at 32 yo, I thought only old ppl got that!

Turns out, a lot

> of ppl do- even Letterman! Good luck and wishing you a

speedy

> recovery!

>

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  • 2 weeks later...
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,

I was just scanning the posts (don't feel like working today), and

saw ' pics - what a cutie! In case I don't say it, I REALLY

appreciate all of your tort advice with !

Kerri

Mom to (DOCbanded 5/9/03)

> ,

> I can certainly relate to your sigh of relief on being done with

the rigorous

> stretching routine!!! Good work mom! is 2 yrs and 5

mos. and is

> doing very well. We recently had a spell where he reverted back

to about a 3

> degree tilt and I was very discouraged because it seemed to

stick! He was going

> through his big molar coming in, and we did incorporate more

stretches and

> righting exercises in play, and now he's very straight, ! As

he's gotten

> older he will listen to us ask him to sit up straight, and we make

a game out

> of his tilting to the opposite side where he thinks its just sooo

funny- but

> he's really stretching! What a change from a screaming child in

pt- thank GOD!

> I'll attach a pic just cause I'm such a proud mommy :) He was

severe and ear

> to shoulder with very noticeable facial and ear asymmetry, with

the DOC band

> we acheived approx. 90-95% correction. BTW- my dh and I sailed

out of

> Vancouver for our honeymoon Alaskan cruise, we LOVED your city and

you have the best

> of both worlds, the ocean and the mountains! Loved Stanley Park

too! :) Good

> luck with your little one in the helmet and keep us posted!

>

> NIcholas' mom

>

>

> [unable to display image]

>

>

> [unable to display image]

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Ummm.......I don't have any? lol She is my 3rd and pictures of her

are few and far between. lol I just developed pics of at

Christmas, how bad is that?

Dustie

> Thanks! How about some new pics of ?!!!!!

>

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  • 1 month later...
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Thanks ! I am just happy that others have noticed too, both my mom and dad noticed when Aidan was in the pool yesterday. You know how sometimes it looks good one day and then the same to you the next? It looked even better this morning so maybe he is having a growth spurt! Finally!! He hasn't grown much since he was 11 months!

Natasharella1234@... wrote:

In a message dated 7/30/2003 4:36:09 PM Eastern Daylight Time, ngubash@... writes:

Last night when I was giving him a bath I noticed that it looked like a chunk of his flat spot had filled in, I called my hubby to come look and he said, "I know, I saw it giving him a bath the night before" . I asked why he didn't say anything and he said he didn't want to "jinx" it. So kiddos keep on growing! Grow Aidan Grow!!! How cute that your dh didn't want to "jinx" it! It's great to see those changes isn't it?!!!! Good to "hear"! 'mom :) For more plagio info

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,

Glad to hear that it does get better - I feel like I'm the " plagio

police " now whenever I see a baby!

Kerri

> I'm embarrassed to say its been 2 years post grad for us! I have

been much

> better about scrutinizing heads (you know we all do that!)- dh

said to me " that

> guy looks like he has tort and plagio " and I honestly didn't even

notice

> before he mentioned it, that's progress :)

>

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  • 4 weeks later...

,

Thanks for that explanation - I was wondering why the difference -

that makes sense...

Kerri

's mom

> In a message dated 8/25/2003 4:36:36 PM Eastern Daylight Time,

> dmsnoopy@e... writes:

>

> > I wonder if there is a

> > difference with a 2nd band in order to address different

issues???

> > There are a lot of things I wish I understood beter about the

banding

> > process. Not because I don't trust our provider, but rather

because

> > I am an informational-type person and like to understand how

things

> > work. The whole process is very interesting to me.

> >

> >

>

> Debbie-

> It was very interesting to see the CT headquarters working in

action on these

> bands- I think your right that a 2nd band will have totally

different issues

> to deal with- the headshape has changed and the new casting shows

the new

> shape, so it will be different than the first. The holding points

may change

> somewhat, which may be part of the reason for the difference in

shifting. Correct

> me if I'm wrong ladies, but the head cast is a negative composite

of the

> flattened areas, and CT then makes a positive of this head shape

(looks like they

> fill in the holes with puddy!) as the corrected head shape.

The " head on a

> stick " is put into a vice, and a square sheet of special plastic is

heated to

> the point that its clear, and then molded onto the corrected head

shape while

> its still warm, moldable, and then cools while on the cast- then

turns the white

> color as it cools off. Then its off to another area where they

sand off

> edges and clean up the rough look. It's very neat and very child

specific for

> each head shape. There are no two headshapes alike they tell us.

So having seen

> that I can understand how a band that a child first wore, could be

completely

> different than the second. I thought it was very interesting too!

>

> 'mom

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  • 2 weeks later...

,

That's funny that you said that - I sent him a cookie basket as a

thank you!

Kerri

> In a message dated 9/9/2003 9:33:07 AM Eastern Daylight Time,

> wolfekm@h... writes:

>

> > My ped laid into him and explained that this isn't to

> > make perfect, it's to keep her from being abnormal, and

all

> > of the problems like asymmetry that go with plagio.

>

> Kerri-

> LOVE HIM! He deserves a big kiss and some chocolate :)

>

> 'mom

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> -

> Not sure if you saw the same article- I also cut and pasted it

under " Alta "

> since the first link didn't feed you directly into it. What I

gathered from

> the research article I posted is that no treatment at all leads to

a permanent

> deformity. Also, the statement at the end that most correction

after 9 months

> greatly diminishes- I believe was directed at the passive helmet

style-

> although at that age I personally would choose an active band if I

had the option, I

> think those that have passive styles could comment on the amount of

correction

> at a later age better than I could.

>

> I asked Tim Littlefield if he knew of any control group studies for

banding

> vs. non-banding, and to his knowledge there have only been 3- I'll

post them

> for your review. I am very skeptical of Doctors who think that

helmets/bands

> only speed up the natural process of correction, everything I've

read is contrary

> to that (from the parents perspective), and everything I've seen

visually as

> far as heads go is as well, nature does not always round heads out-

and I

> certainly don't give Doctors the same amount of credibility about

their knowledge-

> many do not research plagio, they speculate on it.

> I think what I have learned since March 2001- is that 1)

Repositioning is

> only successful if you can realistically keep your child off the

back of the

> head at all times, my constant turning or repositioning did nothing

for us- its

> the parents who have ensured almost zero possibility for time on

that flat spot

> that walked away with repo success- every minute counts for or

against you-

> literally 2) Doctors are less educated than most parents about

plagio after a

> good internet course 3) Heads do not round out necessarily with

time, my twin

> brother, now (sigh) almost 33, after much plagio scrutiny from me,

still has

> a flat right back side of the head, and his ears are slightly

misaligned-

> which being tummy sleepers and the plagio mild, it has never been

an issue for him

> until I joined the head police :)

> 4) Before and after pictures of kids who have been treated are

proof that

> bands and/or helmets work. And my kid is no exception! Thank God

for the band,

> really.

>

> Here is the info for the research articles that Tim was so helpful

with- and

> how to get to them.

>

> Boston †" Dr. Mulliken was the lead, published in 1999 Plastic and

> Reconstructive Surgery (CTI1121)

> Netherlands †" Dr. Vles †" Journal of Craniofacial surgery

(CTI1162)

> New Zealand †" Dr. Loveday + Dr. de Chalain (CTI1107) †" not a

very good

> study, had never done helmets before, started when they started the

study!  

>

> If you go to the research area on the CT website, there is a full

> bibliography †" that’s what the CTI#’s refer to.  The list is

alphabetical by first

> author.

>

> Happy researching :) How is doing? Are you on a 2 week

schedule or 1?

> Was the flight experience good?

>

> 'mom

, I tell you what ........I never would have guessed you were at

work doing all of this research! lmao Sorry, its been awhile.

Dustie

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  • 3 weeks later...

,

I just had to write and say THANK YOU for everything you've done for

me and the others. I especially appreciate you " holding my hand "

when I was crying as much as was with her tort exercises.

It was due to you that I really followed up on her tort and made

sure that we worked to resolve it! Please tell your husband (and

when he gets bigger) that we TRULY appreciate all of your

time and energy, and that you weren't just sitting on the internet

gossipping - you truly helped some mommies (and maybe a few daddies)

and their little ones!

Kerri

's mom

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Oh! Thank you ! Yes, Aidan has been a handful with this second band. Less than 5 weeks to go! Yeah!! Not the perfect head that I hoped for but I can live with it and I really don't think it will bother him as he grows older. Hopefully our baby girl will not be born with torticollis. It would break my heart to have to go through all this again although starting at a younger age would be easier. However, travelling with 2 small children would not be! HAHA

Please keep us posted with all of ' latest achievements! And again, thank you for all your plagio and tort help, you are wonderful!!

Natasharella1234@... wrote:

Natasha,I just wanted to thank you for your kind words to me, I really appreciate it. I loved hearing your stories about Aidan (aka Houdini)- what a task you have! I also enjoyed reading your posts with the wealth of information you have shared! I hope you'll continue to keep me posted on how your doing and wishing you continued good luck with your pregnancy, soon Aidan will be a graduate!?For more plagio info

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  • 2 years later...

Just got back from therapy and the doctor and I'm so disappointed.

They want to do more shots or nerve block shots in two weeks. They wanted to

do it again today but I didn't have my husband with me to drive me home.

I wanted to check in.

My neck and back are killing me. I don't think the pain medicine is even

working.

Please keep me in your prayers please.

Love,

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  • 4 months later...
Guest guest

~ Is your body sensitive because of the implants or something else? auntsisnj <auntsisnj@...> wrote: ,I've heard of them, but after what I've been through with implants, I don't trust things like this in the least bit. Sticking shunts in someone's brain just concerns me. I know someone who has MS and who uses a powdered food supplement called Reliv, and she says she's got her life back because of this. I personally haven't tried

the stuff, but I know they have a website. My friend keeps urging me to try it, but my body is so sensitive I walk on eggshells when it comes to trying new things. >> Does anyone know where I could find imformation regarding shunts that are placed in the brain to relieve pressure. I have a friend who has MS and she is looking into this procedure and is convinced it is her miracle. I asked her what these things are made of and she said, "dont worry, not silicone. They are made of plastic.". I then asked if there were any studies on long term side effects, and she didn't know. She is under the impression that there are not adverse side effects as long as you get a good doctor to insert the thing. I am very scared for her. I want to be

able to give her some information she may not be able to find herself.> > Thanks for your help,> > > > > ---------------------------------> Want to be your own boss? Learn how on Small Business.>

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,

My body was somewhat sensitive before implants, but once I got them,

look out!! I'm now extremely sensitive to chemicals. Before I got

implants, I cleaned the house with some nice toxic cleaning products

that didn't bother me in the least bit. Now I can't clean the house

using those things, because I suffer for it the next day.

By the way, I'm Sis, I'm - friends and family call me Sis, at

work I go by - so hopefully I didn't confuse anyone with

signing on this message, while signing Sis on others.

Sis/ :)

> >

> > Does anyone know where I could find imformation regarding shunts

> that are placed in the brain to relieve pressure. I have a friend

> who has MS and she is looking into this procedure and is convinced

> it is her miracle. I asked her what these things are made of and

> she said, " dont worry, not silicone. They are made of plastic. " . I

> then asked if there were any studies on long term side effects,

and

> she didn't know. She is under the impression that there are not

> adverse side effects as long as you get a good doctor to insert

the

> thing. I am very scared for her. I want to be able to give her

> some information she may not be able to find herself.

> >

> > Thanks for your help,

> >

> >

> >

> >

> > ---------------------------------

> > Want to be your own boss? Learn how on Small Business.

> >

>

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, Personally, I don't have a problem with other kinds of implants when the implant can help save a life or a function. . . It would be great if they could test her for sensitivity to any materials used . . . but I doubt they would. Chances are she will do well with the shunt. The main thing is to be aware of what problems may occur . . . and to maintain excellent health practices to keep one's body as healthy as possible. It appears that the women who have maintained life-long good health practices tolerate implants longer than those who don't. Rogene

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  • 1 year later...
Guest guest

Hey Sandy!

I'm so happy for you, as well! BTW... Dr. Kolb WILL take pics along the process. She did that for me. She is just GREAT! =)

I'm EXCITED for you! The time is getting NEAR!!!.....

- H.

On 7/26/07, Sandy <dusty.com@...> wrote:

I am so very happy for you.

Just think soon you and I will be Free At Last.

You are right behind me in starting a new life.

I am getting my capsules out next Tuesday.

My son is now asking me questions about my surgery

and what does Dr. Kolb look like.

I think he may be worrying what's all going to happen to me

because he literally cared for me at the age of six yrs old.

After I was implanted with saline implants

My son had to be this little man instead of a little boy.

It's been at a snails pace for me figuring out how I was going to

get care for my son and come up with all the money for surgery.

If I had not found these ladies my health would have surely failed

and my son may not of had a mom down the road

These wonderful ladies have seen me through my darkest moments

I cannot believe after all this time I am going to be Free at last.

Soon to be free

Free at last

This capsulelectomy will lift a lot of stress off me

I am going to ask Dr. Kolb if she will take pictures

through the whole process of my capsule removal

This will be my only proof to show all my doctors

all the garbage that made me so very ill.

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