I know this is a long shot don t know how many of you have congenital...

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  • I don't know about congenital hydrocephalus but my first grader (6.5 years old) has some of the same behavior problems. We set up a 504 plan for her through the school, that outlines ways to prevent or interventions for the behaviors. She started in counseling and was screened for ASD by a neurologist. Her counselor, her teacher, and I all shared what we've found works to prevent the outbursts. Namely giving warning prior to transitions, offering extra time to finish the step she's on if possible, and talking in a calm manner (she flips out if anybody talks in raised voices, etc). From what I've been told and read, behavior problems aren't unusual in kids with chronic pain at a young age. Good luck!

  • Thank you! Good luck to you as well! ;)

    From what I've read children with hydro usually have some behavioral problems, although seemingly 'normal' ones. I was just looking for any experience.

    Yes transitions are horrible. His winter coat is a trigger, but man it was $35. I've been making him ride it out (he's been wearing it a year and he feels it's still too big) but maybe I need to buy him a different one :/. We are working on noise cancelling, dimming lights when possible like I have it at home, he is allowed a lil beanie baby for comfort. He's so stinking smart, has so much to offer, these episodes of him running from me are breaking my heart!

  • My daughter also has it written into her plan that she can sit with the teacher or near the teachers desk if she feels overwhelmed. That one seems to help a lot!!

  • I'm also worried about his safety. I had a hip replacement 12 yrs ago and although I could walk again I've never been able to run with it. He knows I can't run after him and he just doesn't realise what could happen here.

  • I don't blame you for being worried! Thankfully my daughter has only run from me a handful of times, and though it's painful for me I can run and catch her. Most of her running has been done at school.