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Thread: Maddox's story

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  1. #1
    Join Date
    Jan 2007
    Posts
    8

    Smile 10 mos old baby boy with scoliosis

    I am so glad to have found a place where I can talk with other parents going through some of the same things we are! My baby Maddox was diagnosed with scoliosis at 6 mos. old. He is now 10 mos. old. We have been using a brace for 4 mos. now and at last x-rays his curve has progressed. His doctors have decided to try the brace for another 3 mos. and if we don't hold or see some improvement the they want to try casting. They say the most important thing is to try to wait as long as we can before we they have to do growth rods. Maddox also had issues at birth. At 37 weeks gestation my OB said that my fundal height measurement was small. After a sono, we did an emergency c-section because he was indeed very small. He weighed only 3lbs. 9oz. when he was born on 4-4-06. He was very wrinkly, his kidneys were not working, his fontanels in his skull were huge and open, he could not suck, and when we tube fed him, he did not digest his food. Our pediatrician sent him to a children's hospital because he was baffled. As soon as we arrived there is condition began to improve. The docs there did all sorts of tests to look for any syndrome, etc. After 3 weeks and not finding any thing we brought him home at 4lbs. 6oz. Everything has been great until this. We are just so worried and frustrated! Also Maddox is still very small. He only weighs about 141/2 lbs., but developmentally he is doing well with pt only every 2 weeks. If anyone has a story to share or any advice we would so appreciate it!! Also if anyone has any knowledge of how these things might be connected, please comment!
    Last edited by d.o'toole; 02-06-2007 at 03:55 PM.

  2. #2
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    hi,

    my son lucas who is now 5 yrs old was diagnosed with scoliosis at 18 mos. what degree of curvature does your son have? what hospital are you going to? i'm very curious about the casting recommendation from your ortho since my son did have serial plaster casting from 2 1/2 yrs old to 4 1/2 yrs old. it helped tremendously. he is still wearing a brace, but so far we have avoided surgery for the scoliosis. there are a couple of yahoo group websites that are out a bit more active if you wish to check those out.

    my best,
    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  3. #3
    Join Date
    Jan 2007
    Posts
    8
    Hi! Thanks so much for your reply! Maddox sees Dr. Nigel Price at the Children's Mercy Hospital in Kansas City. He is supposed to be one of the best in the region. The degree of his curves are in the mid-thirties with his brace and in supine (lying down) position. I'm really nervous about the casting, I guess because I don't know much about it yet. Could you share some of your experiences with us? Of course we are willing to do anything, but would like to avoid surgery for as long as possible.

    Thank you again, Dena

  4. #4
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    hi dena,

    i found the casting experience to be so much better than the bracing in young children. one reason is that at least you know that the cast is always on and in the same place and gradually helping to correct your child's curve as he grows. there was a paper out in 2005 regarding this treatment, and the ortho who is responsible has been convincing orthos in the us to try this treatment in infantile scoliosis patients. it is a slow process, but more and more orthos are being convinced that this treatment is so much better in terms of correcting the scoliosis versus just putting off surgery until a later date. of course, as with everything, it is not a guarantee, but the current methods of bracing do not work.

    i would suggest that you go to this website and read up on some of the stories and information regarding casting: www.infantilescoliosis.org

    also, i would be happy to e-mail you off-board with a link to my own website with pictures of my son in his various braces and casts. i'll send you a private e-mail with the link and password.

    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  5. #5
    Join Date
    Mar 2004
    Location
    Maine
    Posts
    28

    casting

    Dena,

    My daughter was diagnosed with scoliosis at 6 months and has worn a brace for years. She is now 8 years old and she is in her second cast. We wish we had known about serial casting when she was an infant. My daughter thinks that the cast is much more comfortable than the brace she used to wear. Her original curve was 54 degrees lying down at 6 mo.
    Good luck with everything.

    Ann R.
    Mother to 14 year old daughter
    Diagnosed with infantile scoliosis at 6 months (54 degree left thoracic)
    Boston Brace for 5 years.
    Montreal to see Dr. Rivard and Dr. Coillard 7/04 to 1/08(spinecor brace and 3 casts)
    surgery with Dr. Clements Oct. 2008 (8 staples and a hybrid rod)
    3 lengthenings with Dr. Samdani
    Scheduled for fusion with Dr. Samdani

  6. #6
    Join Date
    Jan 2007
    Posts
    8
    Thank you so much for your replies. I wonder why our ortho is so reluctant to cast when we have heard so many good things about it? How restricted are the children's movements and activities with the cast? We have worked so hard to help Maddox keep up developmentally and wonder if we are going to see some delays once the cast is on. How often does it have to be changed? We just went back to see the brace specialist because Maddox was getting a small pressure sore from the brace. How do you know with a cast if that happens? Again, thanks for the replies! -Dena

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