Monica,
I have a word of advice for your son. Please don't make the mistake of not doing an MRI if u haven't already I was unaware my son had the rare disease at all till he stopped"listening" to me. I wish I would have known sooner cause of the behavioral problems after asking three docs to just do an MRI to help me feel better that something wasn't blocking stuff to cause heading problems, half his brain was dead already. It attacked quickly & aggressively & even had to bite doctors heads off to get an emergency bone marrow transplant done. I am still having to tell docs how to do their jobs to get things done for him. His bone marrow transplant was over a year ago, he no longer hears at all, trouble seeing & can't walk.he was always normal till the hearing thing, & nobody noticed out, only after I did around the corner tests offering cookies, & him not moving at all. Please b sure sure is all I'm saying. I'm broke down physically badly the past year caring for him alone, & no help but from one best friend I would've wish my life on my worst enemy.
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Monica,
April 29, 2014 - 11:15pmI have a word of advice for your son. Please don't make the mistake of not doing an MRI if u haven't already I was unaware my son had the rare disease at all till he stopped"listening" to me. I wish I would have known sooner cause of the behavioral problems after asking three docs to just do an MRI to help me feel better that something wasn't blocking stuff to cause heading problems, half his brain was dead already. It attacked quickly & aggressively & even had to bite doctors heads off to get an emergency bone marrow transplant done. I am still having to tell docs how to do their jobs to get things done for him. His bone marrow transplant was over a year ago, he no longer hears at all, trouble seeing & can't walk.he was always normal till the hearing thing, & nobody noticed out, only after I did around the corner tests offering cookies, & him not moving at all. Please b sure sure is all I'm saying. I'm broke down physically badly the past year caring for him alone, & no help but from one best friend I would've wish my life on my worst enemy.
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