ADHD and BEYOND with NO HELP

This topic contains 3 replies, has 3 voices, and was last updated by  myrtlehouse 11 months, 3 weeks ago.

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  • #79920

    myrtlehouse
    Participant

    I am the parent of a young man, 10 years old, who suffers from a multitude of problems and quirks. He suffered a stroke in utero while I was pregnant with him and his twin brother. His twin brother is ok, however, Wyatt suffers from a rare neurological disorder known as Mobius Syndrome. He was diagnosed with ADHD the summer before he was to start kindergarten when his PT threaten to stop seeing him because of his inability to focus, stay on task and follow instructions. I was very reluctant to try medication therapy but it was the next step. We have tried many medications, many! We even moved back to Texas from MT to see if we had more options available to us. I fought and fought to get him to Cook’s Children Hospital in Fort Worth after meeting with his geneticist, pediatric neurologist and so forth. I had to do something after his pediatrician told us he did not have time to “deal with his issues”. After we got our referral, we headed to the partial hospital program where we spent our days with educators, nurses and therapist. It was a 14 day program that he left at day 10 because they had never met anyone like my son and felt that there was nothing they could do form him. I was told the same thing by the neuropsychologist that saw us right before his discharge. She commenced to tell me that my son was one of the “rare” ones, yes that rare word again, that was considered NON-RESPONDANT to medication therapy. Hence why all of those many meds we tried never “worked”. That was in Aug. of 2016. Now, my life consists of weekly MHMR visits, weekly Behavior therapy visits, monthly med management appointments, chart making, organizing, creative parenting to curb impulsive behavior and hyper activity. I feel so ALONE in this world because no one has ever met anyone like my child! He has Mobius, ADHD-CT, Disorder of the brain, Impulsive-Disruptive Conduct control Disorder, Other specified behavior disorder and has sensory neural hearing loss in his right ear curtesy of his stroke plus a congenital ptosis of the right eye that has been surgically fixed once. He is ALWAYS happy, almost manic, never gets angry, never cries, no empathy really towards feelings or punishment or discipline which we can’t do because it doesn’t help. He does not respond to discipline. He is, on the other hand, extremely bright, sweet, funny, caring in his own awkward way. Does ANYONE have a child that suffers with the same problems that no one has ever met before or can be treated by any conventional methods? If so, please let me know. Everyone says “You’re not alone!” well, yes I am until someone else comes forward.

  • #80164

    NumbAllDay
    Participant

    ADHD meds make zombie mood likely. Be careful.

  • #80972

    myrtlehouse
    Participant

    They don’t make him a zombie. They just don’t work! Nothing we have tried curbs his impulsivity or hyperness. He just doe not respond to meds at al

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