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Intro - Mom of a 14 y/o boy needing surgery.

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  • Intro - Mom of a 14 y/o boy needing surgery.

    Hi - My son has had scoliosis since 2001. We tried bracing. It didn't go to well. Mainly because he has very bad balance. When he fell, he was like a tree with no way to stop himself. We tried it at night, he'd take it off in his sleep. The doc said he was pretty sure he'd need surgery anyway. Then it was 22*. Last check in Feb showed it to be in the 50's.

    He has a lot of other problems as well. When he was 4 in 1995 he was diagnosed with a very large malignant brain tumor. It was infiltrating the brainstem. After surgery he developed something called Posterior Fossa Syndrome/CerebellarMutism ... in a nutshell, he lost all abilities and was like a newborn baby, he was essentially 'locked in'. Aware, but unable to respond. Makes me sad remembering. He went through chemo and radiation on his brain and spine. He began growth hormone therapy in 2000, I'm sure that, along with the radition he had contributed greatly to his scoliosis.

    He has made great progress since then. Now were dealing with puberty. GAAAAH! A lot of problems in school. Behavior, depression. He hates it. We were going to wait until summer, so he wouldn't miss any school but he didn't want to ruin his summer, he wants to do it sooner. We agree, it won't hurt him to miss all that school.

    It is scheduled for April 29th. He's not scared or nervous. He's been through so much - I can see why he's not.

    I've learned a lot reading, it's especially helpful to read what the kids that have been through it have to say.

    My biggest worry is how this will affect his balance. The doc said he didn't know.

  • #2
    Oops. Looks like I posted this in the wrong spot. Moderators, please move to the appropriate forum. Thanks.

    Sorry

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    • #3
      Hi Belleto. You and your son have sure been through a lot. I just wondered - is he in middle school now? When my son was in middle school, he hated it so much. The kids - just seems like all the meanness comes out in them during those years and my son took a lot of abuse. He was depressed and acted out as well. We enrolled him in counseling for a while to help him through it. Now he is 16 and in high school and hasn't had any issues since the middle school years - I call them the H#LL years (forgive me but they really were). I can tell you that it does get better but when you are going through it - it really is tough.

      We just found out about his scoliosis this year - it was a shock to us but the school nurse noticed it and told us we should have it checked out so we did and he has a 45 degree curve in his lower back and a 31 degree curve in his upper. The lower is too low to brace and the surgeon feels it will progress as he gets older so he is having his surgery in June.

      Hang in there!

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      • #4
        Yep - Middle school. You are right, they are the h#ll years. My daughter is 10 years older, and she hated MS as well. Everyone says, If you can make it through Middle School, you can make it anywhere. Next year he'll be in high school. I hope it's better and not more of the same.

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        • #5
          For my son, high school has been so much better than middle school. I think it is for a lot of kids as at that point, the kids seems to just stay in their groups and ignore those they used to torment. My son is happy to just blend into the wood work. He has two really good friends that he has grown up with and a few kids in each of his classes that he is friendly with and he's happy with that. I disliked school too. I wasn't picked on or anything, I just never felt like I belonged. It was much better once I went to college and was working part time.

          Your son must be a very strong person to make it through all that he has - and you must be an awesome mom!

          Where are you from? Where are you having the surgery? We're in New Jersey and will be having the surgery at Robert Wood Johnson by Samuel Laufer.

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          • #6
            My daughter had the spinal fusion operation when she was 14 (14 years ago now). At the time it was a big deal - she had a lot of pain beforehand and recovered rather slowly so she was out of school fulltime or part-time for a year altogether. She also got quite low after the surgery, and didn't welcome being extra dependent on me. Some of the other kids who were in with her just sailed through, going back to school in a matter of weeks. So it just depends. In the scheme of things it doesn't really matter if your son misses school or is a pain to you - he has such a lot to contend with and such a difficult age. You have all my sympathy! But don't worry if it takes your son longer to recover. In the long-term my daughter's recovery has been fine, she found her long-term work interest in the time off school, did really badly at school but has done really well since and is also a really nice and sympathetic person now who understands human suffering.

            Best of luck,

            Lavinia

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            • #7
              Thanks carol, he is a very strong and determined (stubborn) boy. The way things have been going behavior wise, I don't feel too awesome. He is getting out of control, and it's worrying to say the least. I worry he'll do more damage after surgery.

              We are in Tacoma, WA. he'll be having surgery at Mary Bridge Childrens Hosp. He had his brain surgery and chemo treatments there too.

              Thanks Lavinia, I agree...he'll be fine missing school. Maybe he'll appreciate it more? He may be able to get some home tutoring....that should go over well.
              Last edited by Belletoo; 04-01-2005, 10:36 AM. Reason: ETA some words I left out

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              • #8
                Well, I think alot of boys at that age push the limits and it take a strong parent to wheel them back in. Hang in there. I found that just being consistent makes a huge difference. At a certain point, and I'm sure its different for each boy, they get tired of the consequences and realize life is easier when they play by the rules. How did the MRI go yesterday?

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                • #9
                  I do hope he comes to that conclusion soon. His outbursts are usually school related, he's pretty good when it's just us.

                  The MRI didn't go too well. He couldn't hold still, they kept having to stop it, finally they said to call the doc to have him schedule one with sedation.

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