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Thread: Need help. I am so new to all of this...

  1. #1
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    Default Need help. I am so new to all of this...

    We have been having a great deal of behavior issues with DS since his brain surgery. The Neuro-Onco team has told us time and again that he needs a year to fully recover. We were also told that "Air to the brain...Never the same!" We are so sad and frustrated.

    Do you think DH and I should get help for ourselves on how to deal with this? Get DS a behavioral evaluation--and how do you even do this? We have a script for PT/OT/ST/Behavior Eval but nobody does a behavior Eval.

    Some of his behaviors--he is angry, aggressive. He bites, scratches, hits, pinches. He gets so erratic and it almost seems like his brain just keeps "firing" and he can't slow down, calm down, or stop what is going on. We have learned to passively restrain him (or hug him from behind) so he doesn't hurt himself or any of us but this is just so sad and tiring. Where do we even begin?

    Thanks
    Jen

  2. #2
    NancyR's Avatar
    NancyR is offline INCIIDer - A Community Creator
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    Hugs Jen! It's so scary to see your child going thru this! Call your medical team and see if anyone has a referral for you for a behavior specialist. If they don't, call the nearest children's hospital and go to their social work department, or child psych department and start there asking everybody for suggestions or if they can refer you to anyone else. I ended up getting a referral for a child psych from a therapist I had seen a few years back for marriage counseling. She had a colleague who had someone she would refer children too in our neighborhood (phew!). I'll have dd start therapy in the next month or two.

    My dd had major surgery to both legs w/a year long recovery, and we had some really horrible temper tantrums from all the stress of surgery, pain, withdrawal from pain meds, social pressures at school (horrible), etc... completely out of character for her! I've never in my life seen anything like this, animalistic (heck rabid even!) is the closest word I could use to describe her behavior. I was coming to work with bruises from being bitten (and she was never a biter!). The behavior really peaked about 3 or 4 months after surgery. Now, we're about a year out and her emotions, etc... are finally coming round. My dad and sister witnessed Leela's worst meltdown and really couldn't believe the anger and raw emotions, it was so scarey. I'm glad they were there to support me! And, the meltdown was over the fact I had asked dd to leave the sandbox and come over and have a little snack - since she had said she was hungry, really inappropriate reaction, but obivously the release valve went off on the pressure cooker, ouch!

    Please, get support for yourselves as well as your ds. It truly can be overwhelming and heartbreaking and you really want to do all you can to help him and yourselves too. He's going to need coping skills to help him when he gets to school, etc.. and you will need to apply those techniques at home! It'll also be helpful to start differentiating between what is really a reaction to the stress of his surgery and recovery, versus behavioral changes due to surgery (if any!).

    Much much love your way! Nancy and Leela 3/02

  3. #3
    anniemc2000 is offline INCIIDer - A Community Creator
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    Default Maybe someone who could work with you both?

    I am thinking a child psychiatrist of psychologist could meet with your son and offer therapy but also offer you some guidance on how to cope with everything you're dealing with. Like Nancy said, your medical team or the children's hospital should be able to point you in the right direction.
    Big hugs! This must be so hard.
    Ann

  4. #4
    amelia1 is offline INCIIDer - A Community Creator
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    I do think you and DH need to find some help for yourselves on how to deal with this. (((Hugs))) I'm sure there is a head trauma support group out there somewhere. I hope things calm down for your son soon.

  5. #5
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    Default Hugs,

    Without knowing his age and a bit more, I'm not sure. You could try a behavioral ped, but they might send him back to his neuro since he had recent surgery.

    I think I would go back to your neurosurgeon and ask if there is anything they can do during the 1-year healing process.

    Charlotte
    Morgan 12.5 (ASD)

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