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Thread: New to this

  1. #1
    Join Date
    Mar 2007
    Posts
    2

    New to this

    Hi, My name is Alison and I have a 18month old boy called Fraser with scoliosis, he was diagnosed in Feb 2006 but was only at 12 degrees so we were told they would see him again in 1 year but I could see it getting worse and in October 2006 it was 40 degrees and they still wanted to wait, well it is now 64 degrees and I have finally found a doctor who wants to do something and has given me 2 options, either casting or surgery and have only a short time to make up my mind which way to go but don't know much about either so wondering if anyone can give me some advice or point me in the right direction on articles. We live in Australia and they don't seem to do much casting and have been told one of the reasons is the weather, we live up north and it just doens't get cold.

    Fraser also has eating problems, in that he can't eat a large amount and therefore he is very underweight, he is currently on a nasal gastric tube and they are talking about putting a button in. One other thing he doesn't feel pain, has anyone else got a little one that has any of these problems and can they be associated with the scoliosis.

    A very confused mum
    Alison
    Last edited by Scottie39; 03-16-2007 at 03:52 PM.

  2. #2
    Join Date
    Sep 2006
    Posts
    416
    Alison,

    I'm sorry to hear of your frustrations. I can't help much with the decision making process, but it sounds like a competent experienced Dr. and some research is a great start. Bracing of some variety also sounds imperative at this point. The 'wait and watch' approach should be dismissed immediately.

    On the stomach thing though... Do you know the etiology (cause) of the scoliosis? Is it a structural malformation (boney anomaly, rib fusion, etc.)? If not, I might be very curious to explore the possibility that his eating/stomach condition may be influencing the curvature and growth of his spine. i.e. - A visceral lesion(s) causing the body to grow around it, attempting to protect the integrity of the organ(s). I would certainly pursue all the proper/conventional avenues, but I might suggest looking into this one as well. It may not be a 'separate' issue as is commonly thought of these types of things. If interested, you would consult a manipulative osteopathic physician versed in visceral manipulation for that particular situation.

    Best to you,
    Structural

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Alison,

    First, take a deep breath. Relax. Gather all your information together before you panic. Easier said than done, I know.

    Like someone else mentioned, you need to know the basics of Fraser's spine issues. Scoliosis in an infant is not common. There are lots of variables involved, and you need to make sure you (the parent) understand everything before agreeing to something as serious as surgery.

    If the bone structure of his spine is healthy (no malformations of the vertebrae) then casting IS an option. There is a great Yahoo email list for parents of infants and very young children with scoliosis - http://health.groups.yahoo.com/group...ile_scoliosis/

    There are several moms from Australia who would be able to at least offer names of orthopedic surgeons who may give you more information.

    Besides the GI problems (common in our kids, sorry to say) does he have any other medical issues? Many infants with scoliosis have low muscle tone (sometimes associated with a connective tissue disorder). Does he have any strange marks on his back (ie, lump, hairy patch, birthmark, etc.)? These would be external indicators of a spinal cord problem that would need to be resolved before any surgical intervention.

    Fusion surgery should be an absolute last resort. Please make sure you have exhausted all your resources before allowing them to fuse Fraser's spine.

    I look forward to hearing updates. Good luck and let me know if you have any other 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/

  4. #4
    Join Date
    Mar 2007
    Posts
    2
    Thanks for all the information Carmel,


    The surgeon I have seen has given me the options of serial casting or growth rods, both I don't know a lot about. Fraser doesn't have any reason for the scoliosis, he has had a few MRI's and the specialists tell me there is nothing there. He does have problems with eating and doesn't seem to feel pain and they also think he may have a disease called hemihypertrophy, one side of his body will grow larger than the other and there are other internal complications with that one. He is about to have a button put in for his lack of eating, he likes food but just can't seem to tolerate a lot so he is very under weight and nothing they seem to do seems to help him put weight on. He does have a lump on his back which no-one has explained, I have had an awful time getting doctors to take notice and do something - I even had an orthopedic surgeon tell me a couple of weeks ago that Fraser's 58 degrees scoliosis wasn't that bad and not to worry, needless to say I don't see him any longer.

    What I am trying to do is to find out informaiton on pro's and con's of casts and growth rods to make an informed decision. I am on my own with 3 boys and need to make a decision that is not going to impact us all too much but obviously the best thing for Fraser. I have been fighting with doctors for nealry 18 months now and am just so frustrated.

    Any pointers you could give me would be so appreciated.

    Thanks Alison

  5. #5
    Join Date
    Nov 2005
    Posts
    402
    Hi Alison,

    I'm really sorry to hear about your son's problems. I just wanted to mention that I had a similar sized (idiopathic) curve when I was Fraser's age, and was put into plaster casts. This was 30 years ago so they didn't use the casts to correct the scoliosis, but rather to hold the curve to prevent it from getting worse. I wore the casts - and Milwaukee braces when I got a bit older - until I was 10, when I had my first surgery to correct my thoracic curve.

    I can say that wearing casts isn't horrible or barbaric or whatever some people think. Casts are fine, they're not uncomfortable, and when you wear them from babyhood they are just a normal part of life. If Fraser is able to have serial casting then please do consider it. I have a friend whose daughter wore serial casts and did brilliantly; she's in a Spinecor brace now. I'm sure she'll post when she sees this thread, as she's become quite an expert on scoliosis in infants

    Good luck!

  6. #6
    Join Date
    Aug 2006
    Posts
    369
    Alison

    Celia will be back soon. She is the one to connect with about serial casting her child has has wounderful results. Perhap you should read her signature and private message her so she finds you as soon as she is back on.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

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