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Thread: new today-trying to deal..

  1. #1
    Join Date
    Jul 2006
    Posts
    20

    new today-trying to deal..

    Hello-

    This would be my first post here. We have recently found out about our 14 mo. old, Miles, 30 degree scoliosis. It is SO much information, in such a short period..and still much of it up in the air. He goes in 2 weeks for his MRI, as they want to rule out (or in..) the possibility of a cyst on his spine- called a syrinx. I am overwhelmed, saddened, and frightened. Miles was ill as a newborn. We overcame that, and other than this latest news,he is vibrant, active, HUGELY happy!!
    With an 11 year old, and a nine year old, it's hard to explain to them what will happen for him...as we dont know. Of course, I am madly researching as much as possible--and a bit disheartened at all of the conflicting info. At this early stage, I'm trying not to project too much..and enjoy every day for what it is. I remind myself to stay grateful that this is not something far worse-which seems to be getting my husband through a little better that it does me right now. I would feel redundant to continue on and on about my feelings--as I'm sure that all here can relate..but decided to get some support asap.
    Y'know...Miles had six spinal taps at 48 hrs. old ( to rule out a suspected viral infection at birth) I'm wondering if anyone has info on if this could have played a role..(?) or has had a similar situation. Yikes- there I go projecting again. Realistically, we cannot plan until we recieve the results of the MRI on the 25th. Any responses appreciated-trying to hold it together.
    Best to everyone here.
    Milesmom

    Mom to Miles 14 mo, Ben 9, Allie 11.

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome Milesmom,

    First, take a few deep breaths... relax... breathe... relax... You need to do this several times a day. It makes everything a little easier to deal with.

    Miles needs to be seeing a pediatric orthopedist who has extensive experience treating infants/toddlers with scoliosis. It sounds like you are on the right track to begin with. Scoliosis in infants/toddlers is not common. You need to make sure there are no underlying conditions that would complicate the scoliosis. The MRI will help. Call before the MRI is done and make sure they are doing a FULL spine MRI, not just a localized scan. Also, call and find a pediatric neurosurgeon to read the MRI (the actual scan - not just the radiologist's report). This will help you know that all the bases are covered.

    Once you know if the scoliosis is idiopathic (no bone malformations) or congenital (at least one malformed bone) then you'll know the best "plan" to go with. There has been good success with serial casting at two of the Shriners hospitals in the USA (and a few other hospitals). Bracing has not proven good or bad. Surgery should be a last option, especially fusion. Fusion should be a last resort.

    Let us know if you have any more questions.
    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/

  3. #3
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    milesmom,

    i don't have anything to add since carmell did such a good job! i just wanted to "welcome" you and let you know that there are quite a few of us here to help. please ask questions and keep us updated on any news.

    my best,
    deshea
    mom to lucas 4 1/2 yrs old -- diagnosed at 18mos with infantile/idiopathic scoliosis 68o/45o; spinal detethering surgery due to tight/fatty filum at 22 mos, wore tlso brace during the day and a charleston/bending brace at night until 2 1/2 yrs, then serial plaster casts at shriners in erie, pa until june this year; currently in a "tlso" brace made from a cast. standing 20o/?.
    AND ruby 2 yrs old
    north of boston, ma

  4. #4
    Join Date
    Mar 2004
    Posts
    1,140
    Quote Originally Posted by Carmell
    Bracing has not proven good or bad.....
    Actually, bracing has been proven ineffective for infantile scoliosis. There was a study by Dr. Min Mehta which showed that children who were braced instead of casted for benign progressive infantile scoliosis during the first three years of life - eventually *ALL* progressed to surgery levels and required spinal fusion at some point during their growth. The article is entitled "Infantile Idiopathic Scoliosis" by Dr. Min Mehta. The discussion starts on page 113 and goes through to page 119. Figure 4.12 depicts 15 children with benign progressive infantile scoliosis who were treated with bracing alone - some started out with curves as small as 20 degrees and all progressed and eventually required spinal fusion.

    Here is a link to the article:

    http://www.scoliosis-support.org/mod...wcat.php?cid=4
    Last edited by Celia; 07-16-2006 at 09:16 PM.

  5. #5
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    celia,

    you have a lot of articles listed so perhaps if you put this link:

    http://www.scoliosis-support.org/mod...1&lid=27&cid=4

    then someone will immediately download the right article. i tried to get the right article and put it as an attachment here, but it is too large even when i cut it down to just the pages that you want.

    deshea

  6. #6
    Join Date
    Mar 2004
    Posts
    1,140
    That looks much better, thanks Deshea ! I wish we could upload articles directly on here.

    This article was written 30 - 40 years ago and no one has caught on ? I think we're the only ones reading medical journals and orthopaedic specialists are sitting in some ivory tower totally oblivious to reality making the same mistakes over and OVER again
    Last edited by Celia; 07-18-2006 at 05:07 AM.

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