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Thread: 11 year daughter diagnosed today

  1. #1
    Join Date
    Feb 2005
    Location
    Germany but am English
    Posts
    2

    Thumbs down 11 year daughter diagnosed today

    Hello everyone.

    I have been searching and searching the net for as much info as I can on scoliosis and I came across this site, and I am very glad I did:0)

    My daughter came home from school yesterday in floods of tears as she had been picked on because of the way she ran in the playground... I asked her what she meant, and she said that the kids were laughing at her because of the way she runs, but she said she has to run like that because her back feels awkward and hurts when she runs..

    Well alarm bells went off in my head, though I had not even heard of scoliosis. I got her an appointment with the DR this morning and he said she has lumber scoliosis, and she also has a 2cm diff in leg length.

    We have a referral to orthapeadics next friday.

    I am scared, upset, concerned and feel so dam guilty, I never noticed any of this. I have been reading info and it seems surgery is the only complete cure? am I right in thinking that?

    What a bad day.

    Thank you for reading.

  2. #2
    Join Date
    Feb 2004
    Location
    New Zealand
    Posts
    108
    Yes, a very bad day. And it's a day that nearly all the scoli Mums and Dads here have had.

    My daughter was diagnosed 14 months ago. By the time her scoli was detected her curves were already 37 and 30 degrees (that is, Big Bad Curves). The only sign of her curvature was that her right shoulder blade stuck out a bit funny. I took her to the GP for that, and he said there wasn't anything wrong, and I was just being an overanxious Mum. A couple of hours later he called us at home to say he had spoken to a spine specialist who had said to rush that child in for x-rays, because winging shoulder blades are a sign of serious scoliosis (you don't get the winging until the thoracic spine has started to rotate as the curve gets large). X-rays the next morning, then two days later she was wrapped in plaster being fitted for her brace. Sort of like being hit by a truck.

    However, once we got accustomed to it, the brace wasn't so bad. Whoever told you that surgery was the only solution for scoli was mistaken. For curves less than 20 degrees, your doctor may actually not do anything, and just look for evidence of progression with regular checkups. For curves from 30 to 50, most doctors will prescribe a brace. In most cases these days, the brace is like a plastic corset that stretches from under the arms to the hips. It is largely hidden by clothes (except of course no tummy-baring crop tops and so forth). My daughter has worn her brace 23 hours a day since diagnosis. Her comfort isn't much affected (once the brace was adjusted correctly) and her activities have not been restricted in any way.

    For some children, the brace will prevent progression of the curve until they have finished growing. Curves that are under 30 degrees at spinal maturity tend not to progress and, as our doctor said, "she can just walk around with a curvy spine for her whole life." No worries.

    In some cases, the brace doesn't control the progression. Unfortunately, it has not in my daughter's case. Her curves are now at 52 and 50 degrees. (My theory is that bracing is more successful for kids with single curves than for kids like mine with double curves, as there is more straight spine for the brace to push against, but I haven't actually seen any data on this. Perhaps Linda or Carmell know?) Only when curves get over 40 or 50 (depending on the doctor, this seems) will anyone start talking seriously about surgery. In our case, Caitlin's surgery is scheduled for 2nd May, and thinking about it makes me want to throw up, but our understanding is that, as surgical procedures go, this is a pretty good one to get stuck with. Young adolescents come through the procedure very well, tend to recover quickly, and then get on with their lives. (Wander over to www.spinekids.com to meet a lot of teenagers who have been through, or are about to go through the surgery.)

    If your daughter's curve is small (and if she doesn't look obviously asymmetric, one would think it is) you've probably got a long time to think about all these things and make decisions about her care.

    One thing to consider, since you're in Germany anyway, there is a clinic there (Katherina Schoch (?) not sure of the spelling; in the south of the country, I believe) that claims to have good success managing scoli through physical therapy. Our surgeon was fairly dismissive of their approach, and feels that no amount of phyiscal therapy is going to straighten out a spine that plans to grow curved, but this German clinic has been at it for many years, and have some nice success stories on their website for what look like people with smallish curves. I wouldn't personally get my hopes up too high, but if you're like most of the Mums on this forum, you'll want to look at all your options. (Having said that, there are some frightening stories of obvious quackery and exploitation in scoli "cures". I haven't read of any pertaining to these German clinics, but there are proportionally few Europeans on the forum, so perhaps we don't hear about them. The ones people seem to have had bad experiences with are Copes and to a lesser extent, ASCO -- search the archives if you're interested.)

    Anyway, that's a start. No doubt you'll have more questions. Bring 'em on. All of us scoli Mums and Dads have probably asked them ourselves.

    Cheers - Patricia
    New Zealand

  3. #3
    Join Date
    Jul 2004
    Location
    austinl tx
    Posts
    112
    Jeni,
    First I would like to say I am sorry you and your dtr are facing scoliosis, but this forum is wonderful and you will see you have alot in common with us.
    So my point is please don't feel quilty for too long. Your energy will better be used in research and helping your child to KNOW this is not forever.
    I didnot discover my dtr's curve untill it was 47 degrees. And many times she complained but I thought it was bc of the places she did her homework (on her bed or on the floor)so when summer came and there was no homework and I ran my hand over her back I was physically sick at how terribly wrong I had been and all my years as a stay at home mom meant I was a complete failure.
    So yes the guilt does not go completely away,but there is at least something that can be done.
    So good luck and keep us posted, mamakay.
    now 16 yr old daughter
    with worsen 65 degree upper curve
    surgery Nov 3, 04

  4. #4
    Join Date
    Feb 2005
    Location
    Germany but am English
    Posts
    2
    Thank you so much for the replies, that spinekids site looks fab, I am so lucky I came across this site to start with.

    We have woken up today feeling positive and to get ourselves armed with a smuch info as poss.

    I meant to say in my 1st post that SIobhan has one should and hip slightly higher than the other, now I know I can see it.

    Her the bottom of her spine seems to be pointing to the right, but her left leg is longer, and this is a way does not make sense to me, maybe I am just not getting it.

    Its so good but very sad at the same time to know that there are others out there that know excatly what you are thinking, feeling and wondering.

    "I always thought things like this never happen to people like us"

    Sorry for sounding selfish, I just can't believe all this. xx

  5. #5
    Join Date
    Jan 2005
    Location
    Sterling Hts, Michigan
    Posts
    2
    Hi:

    I understand exactly how you feel. My Son was diagnosed last fall, and I found his scoliosis quite by accident. It was devastating to me. I found it on a Friday and cried the entire weekend. I too went through the guilt and confusion on how and why. I felt that I failed as a parent because I did not "notice" his scoliosis sooner. My son had no outward sign of the scoliosis, yet his curves were diagnosed at 12 and 32 degrees. The only way I caught it was his ribs being higher on one side when he bent over to pick up our Dog off of the floor.

    Jeff has been in a brace since right after Thanksgiving. It has been going quite well. We are seeing a specialist out of our local Children's Hospital and I like the Dr., but the visits are still very stressful and confusing at times.

    The hardest thing for me is not knowing what is going to happen next. Jeff is taking it very well and has adopted to the situation just fine. I fret over skin irritations, and I find myself looking at his back to see if the spine is progressing by me just "observing" what his spine looks like from the outside. ( I know you really cannot tell that way, but it makes me feel in control somehow!)

    I am new to this board, this experience and I am closer to how you feel than some parents who have been dealing with this for a while. It is very difficult. Do not blame yourself. You cannot change what has happened.

    I am learning how to take one day at a time, one visit at a time. It was even harder for me to understand because I have a boy, and it is "percieved" to be a disorder that a girl only gets. I now know that is not true.

    What does the future hold for any of our kids with this condition? I don't think we truly know while we wait to see if their conditions stabilze or worsen. That is the hard part. Hang in there, seek the support like I have and keep us posted. We can get through this together!

    Sharon

  6. #6
    Join Date
    Feb 2004
    Location
    New Zealand
    Posts
    108
    I find myself looking at his back to see if the spine is progressing by me just "observing" what his spine looks like from the outside. ( I know you really cannot tell that way
    Yes you can. Between my daughter's last two appointments it was clear to the naked eye that her shoulder blade was winging out more. This corresponded to a significant progression in her curve.

    As she is now scheduled for surgery, her surgeon has permitted her to come out of the brace during school hours (she started high school last week -- southern hemisphere schedule). Her surgeon has told us to watch her back for a difference we can see, and if we observe it, she goes back into the brace 23/7. He had us take a photograph of her back on the first day of school, and we're to check against it weekly.

    You keep doing the Eagle Eyed Mum thing. If you see no change, it's probably good; if you see a change, it may mean the brace needs adjusting. (A photograph really does help here, as the change is so gradual.)

    As for what the future holds for our kids, it holds exactly what it holds for other kids, with this extra added period of challenge. There may be bracing, and there may even be surgery, but when you listen to the older scoli girls over on spinekids, it's clear that when their condition is resolved, they just get on with their normal lives. Except they have a little special knowledge about their own strength and their family's commitment to them, and a greater tolerance for other people who are having troubled times. Ok, I'm sounding like a bad greeting card here, but I actually believe this stuff.....

    Cheers -

    Patricia
    New Zealand

  7. #7
    Join Date
    Mar 2004
    Posts
    1,140
    Jeni,

    I think all the replies to your post are awesome. I just wanted to add a few things. Even though your daughter has the "dreaded" scoliosis - there are a few positives here.

    First of all, your daughter's scoliosis is lumbar and for some reason lumbar scoliosis responds well to bracing vs thoracic scoliosis which is more problematic. This all depends of course on the degree of curvature - if it's over 40 or 45 degrees bracing is not very effective.

    Secondly, since there is a leg length discrepancy of 2 cm - a shoe lift might resolve the problem. I think I read something a while back that scoliosis that is caused by leg length discrepancies are non-structural and therefore once the cause of the problem is rectified then the scoliosis will resolve ??? Any thoughts on this ? I don't want to give you false hopes, but I'm pretty sure that's what I read.




    Celia

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