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Celia
03-08-2004, 10:29 AM
I would like to introduce myself and my daughter, Deirdre. She is now three years and five months. At 18 months, I discovered during one of her baths that her ribs were not where they should have been. I remember looking at myself in the mirror at the time and I was white as a sheet. I didn't know what she had, I thought it was cancer or something. I didn't know what scoliosis was or what to look for. I always thought her back looked a little funny, but I never thought that it was possible for a spine to curve and rotate like that. I do recall her pediatrician looking at her back during the three month check-up but he never said anything to me !!!

Later, when an x-ray was done I discovered that she had a sixty
degree curve. Within two weeks, just before she was placed in her first cast, her curve had already progressed to 68 degrees. The medical objective was to delay surgery for as long as possible. Filled with fear about the possibility of spinal fusion, I read about different treatment options. I came across the following websites:

http://www.sauk.org.uk/infant_treatment.htm

http://www.scoliosis.org/resources/medicalupdates/earlyonset.php

The only option that held out any hope for Deirdre seemed to be
serial casting. At the next visit with her orthopedist, I insisted
that he keep her in the cast and have it replaced within three months time (to allow for growth). Everytime we went for a visit with the doctor, I kept insisting that he continue to change her cast. By the third cast( six months later ) her curve had decreased to 14 degrees !!! (lying down) A stand-up x-ray later revealed that her curve was at 19 degrees.

The last time she had an x-ray done was in November of 2003, and her curve was 13 degrees (standing-up). She has been in and out of casts for the past 21 months. She has had five cast changes. Sure it hasn't been a cup of tea, but who ever said scoliosis was going to be easy. I am hoping that her next cast change will be her last and that she will be straight once and for all !!!

Thanks for listening and I hope this story will inspire someone out
there.




Celia

Carmell
03-08-2004, 06:09 PM
Hi Celia,

I'm glad you posted your great success story. I hope your little one will have continued success with her casting and whatever other treatments the docs recommend. It's good to have a variety of experiences on the board so other families just beginning this journey can have a sounding board to lean on. I look forward to learning more about your experiences.

Celia
03-09-2004, 09:01 AM
Carmell,


Thank-you for your good wishes. I certainly will keep you posted on how things unfold with Deirdre. I have read your website and your story is quite inspirational. I have seen the most recent photographs of Braydon - Jan 2004 - and his back looks amazing!!! How did the expansion go on March 1st ? I hope all is well.

Deirdre has an excellent doctor, Dr. Douglas Hedden. I'm so grateful he has gone along with all of this. He normally doesn't cast for such a long period of time - he has given Deirdre a second chance at a normal life. I am forever grateful to this wonderful man.

I contacted Dr. Min Mehta (the doctor who pioneered serial casting in infants) in the summer of 2003 and she advised that Deirdre was not yet ready to go into a brace - not until her spine had completely derotated and her ribs symmetrical. Dr. Min Mehta has treated many young children with severe scoliosis and made them straight. She is now retired but does maintain an interest in scoliosis cases and acts as a consultant. The before and after x-ray images in the SAUK website is that of a young child treated by Min Mehta. I wish more doctors were familiar with her methods.

Carmell
03-09-2004, 01:00 PM
Hi Celia,

It's pretty amazing how our bodies work. And, how different treatment options produce different outcomes for different patients. This proves that there is no one RIGHT procedure for all. Each case is so different and so unique, requiring unique care and treatment. We feel much the same way you do about Braydon's TRP procedure. We have a general idea of how his health would be if we did not choose this procedure. I'm thankful, daily, that he is healthy and strong and growing well!

Surgery last Monday (Mar. 1) went well. They expanded the hybrid (spine support) rod and exchanged the chestwall rod. The incisions were minimal, considering they had to undo the top and bottom part of the chestwall device. During this surgery they also operated on his ankle. He is now wearing a green cast. He thinks that's pretty cool, until the skin under the cast starts itching, then it's not so cool. Hopefully his ankle will be stronger and he'll be able to walk better in the future.

Again, I wish you the best!

Celia
03-14-2004, 09:39 AM
Carmell,

I wish I had a fraction of your strength and determination. You are an inspiration to many.





Celia

Celia
03-18-2004, 02:28 PM
Carmell,


I would like to show you and other parents the amazing results we have had with serial casting. Below are some x-ray images of Deirdre's spine before treatment and the most recent one. The original x-ray shows a curve of 60 degrees.

http://i41.photobucket.com/albums/e251/sealy25/Picture144.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture133.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture129.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture135.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture077.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture074.jpg

Carmell
03-18-2004, 05:02 PM
Celia - thanks for sharing! The pictures really tell the story - quite a difference. Keep up the great work!

Celia
03-22-2007, 02:53 PM
We got back from our Montreal Trip last week and it was lovely!!! Have I mentioned that I *love* Dr. Rivard and Dr. Coillard - they are the nicest people/doctors in the world!!!! Without further ado.... here is Deirdre's latest x-ray as of March 2007. She has been wearing the Spinecor brace for 16 months. I am beginning see a light at the end of this tunnel


http://i41.photobucket.com/albums/e251/sealy25/deirdre200703.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture004_edited.jpg


*******

debigolebiwski
03-22-2007, 03:57 PM
Celia, I am so happy for your daughter. I was born with scoliosis, too. I wore the milwaukee until I was 16-17. Now I am in this body jacket. I want so badly to try the spinecor for my pain management. I have fullest intentions of doing just that when I can find the finances for doing so.

amandap
03-22-2007, 05:16 PM
Her back looks absolutely amazing.

I'm glad the spinecore is working for her, I hope all continues to go well for her.

Amanda

Celia
03-22-2007, 05:58 PM
I do feel very blessed! Two wonderful kids, a *great* husband and the people I've met along the way. I re-read my initial post and the emotions I was feeling the day I discovered my daughter's scoliosis came rushing back although it felt as though I was reading someone else's life - a different lifetime ago.

*

christine2
03-17-2008, 02:01 PM
Hi everyone

Here are Dierdre's X rays from Celia

Orig. May 2002

Most recent 3/2008

After serial casting and Spinecor. I myself am just amazed at the results!!
May 2002

March 2008
http://i41.photobucket.com/albums/e251/sealy25/deirdre032008.jpg

May 2002
http://i41.photobucket.com/albums/e251/sealy25/deirdresfirstx-ray.jpg