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Thread: My 2 Kids

  1. #1
    Join Date
    Apr 2004
    Location
    Michigan
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    3

    My 2 Kids

    Hi I am new here and very interested. Recently my 2 yr old was diagnosed with scoliosis with a 40 degree curve, her doctor stated that it is progressive. I recently gave birth to a beautiful baby boy and at 2 moths old has also been diagnosed with scoliosis. They are both scheduled for MRI's and CT Scan's later next month. Any advise and experiences would be greatly appreciated.

  2. #2
    Join Date
    Mar 2004
    Posts
    1,140

    Idiopathic Scoliosis ?

    Tara,

    Has your doctor ruled out congenital scoliosis ? I am so sorry to hear that both of your young children have scoliosis. It's hard enough when just one has it. My little girl had severe scoliosis when it was first diagnosed. You can read her story under the heading (Idiopathic Scoliosis - infantile) on the National Scoliosis Foundation site.

    If both your children have idiopathic scoliosis, I would seriously consider casting as the METHOD of treatment. Braces will NOT hold progressive curves during the rapid growth that your children will experience until the age of four.






    Celia
    Last edited by Celia; 06-27-2004 at 06:16 AM.

  3. #3
    Join Date
    Mar 2004
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    1,140

    Cat-Scan ?

    I would be very wary of Cat-Scans on young children - especially a two month old. The MRI should be sufficient to rule out any neurological anomalies and give the physician a good view of the spine.

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Tara,

    Welcome to the board. Try to take a deep breath and take this one step at a time. Start writing down questions that are specific to each of your children. You will want to make sure there is nothing medical that could be contributing to the curve of the spine. Do they have a neuromuscular problem (i.e., muscular dystrophy, cerebral palsy, etc.) or something like hypotonia? Those are things you will want to rule out.

    Also, find out if the curves are caused by a bone malformation (congenital scoliosis). That would make a difference in how the treatment is recommended and what the statistics are for progression of the curves.

    The MRI will show if there is a spinal cord problem. Try to get a pediatric neurosurgeon to read the scan, besides the radiologist. Sometimes the neurosurgeon can see things the radiology team doesn't know to look for.

    Make sure you are seeing a PEDIATRIC orthopedist who specializes in scoliosis and spine malformations. You need to have 100% confidence in the medical professional treating your children - you will be with them a long time.

    Feel free to ask questions. You are beginning a long journey and we have a collectively large shoulder to lean on. I have two children with two very different types of scoliosis. I'd be happy to share our experiences with you. You can email me at boulderfam@hotmail.com

    Good luck and keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  5. #5
    Join Date
    Mar 2004
    Location
    Utah
    Posts
    8
    Hi there,
    My son is also two and is being braced for scoliosis. His curve is 35. He also has a tethered spinal cord which could be causing it to be worse. He will be going in for surgery on the 10th to correct it. They should have a mri to rule a tethered cord out... like Carmell suggested.
    Have they told you what they are going to do for them? Casting or bracing? I was never given an option for casting so I don't know much about that but my two year old is in a brace and he is doing much better than I thought he would. They adjust so well in fact much better than we adults do!!
    Good luck and let us know how things go..

    Michele mom to 2 1/2 yr Nathan(pierre robin syndrome, braced for scolosis, tethered cord, repiared hernia, repaired club feet, ear tubes, repaired palate, and soon to be corrected tethered cord.)
    & Austin 8yrs and Cody 6months old and both perfectly healthy.

  6. #6
    Join Date
    Mar 2004
    Posts
    1,140

    Why not casting ?

    I don't know why casting is not offered en mass by orthopedic doctors. It is well documented in medical journals that casting not only eradicates the deformity but can also hold severe curves which are past the resolving point better than braces. If anything, it can buy these children precious time before surgery is absolutely necessary.

    I am sure that the medical establishment is well aware of the ineffectiveness of braces in the treatment of progressive scoliosis. Why parents of young children with this ailment are put through this big run around only to be confronted with spinal fusion in the end, is a total mystery to me. Spinal fusion is just the beginning of a life long battle with pain that many of these children will endure. Spinal fusion will not end the problem.




    Celia
    Last edited by Celia; 06-27-2004 at 06:23 AM.

  7. #7
    Join Date
    Oct 2003
    Location
    Vancouver, Canada
    Posts
    20
    Hi Tara,
    I don't know if it is any comfort but I just had a second son with scoli too. It's 99% certain that it's the same congenital malformations as his older brother. It was not supposed to be genetic but I think it is. It's been a huge disappointment to say the least. How are you?
    Susan
    Surattius
    Mum to two boys with scoliosis

  8. #8
    Join Date
    May 2004
    Posts
    11
    Celia,

    why should be casts more successful than a brace? I mean, when a brace is woarn for 23 hours on 7 days per week - where is the difference to a cast? Of course the brace must be effective (= correcting the curve as much as possible).

    best regards,
    Lilith

  9. #9
    Join Date
    Mar 2004
    Posts
    1,140
    Lilith,

    Wow, I just saw your post !!! Sorry it has taken so long to respond.

    From what I've read, it appears the reason casts work better than braces is because they can't be removed - consequently the spine is continuously in a corrected state. Growth is a powerful force which can heal a bent spine. A doctor will change the cast to accomodate growth and everytime the cast is changed, attempts will be made to further staighten the spine. I have also read, that because the child has to be anesthetized for the cast, a doctor is able to manipulate the spine ( in a relaxed state ) so that a very good correction is achieved. If you would like access to any of the research articles which prove this, please let me know. I was going to post one, unfortunately they're a bit lenghty.

    By the way, my daughter's cast looks just like a regular boston brace, however it can't be removed. There is a thin sheet of plaster about 1/4 of an inch thick in the molding and this molding is wrapped in fibreglass. It's a VERY lightweight cast which is inconspicuous underneath clothing. Most people are NOT aware that she has it on. She will probably have to go into a brace within the next year - I'm thinking Milwaukee brace ? I've also looked into the SpineCor brace but she is too young for this brace. The reason I'm totally against the regular boston brace is because I've read that they are SO tight and most children can't tolerate it - Also, under-arm braces lead to rib cage compression which can reduce lung function by 20 %. Casts are not tight at all - my daughter is very comfortable in her cast. I keep asking her if the cast is tight and she says NO !!!. I can see for myself that she is very much at ease - we have no problems whatsoever with the cast. I also have peace of mind knowing that her spine is healing and getting better... more importantly, that her lungs and heart are growing and functioning the way they should.




    Celia

    Last edited by Celia; 08-26-2004 at 04:57 PM.

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