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Old 05-03-2015, 02:37 PM   #6
Join Date: May 2015
Location: South Carolina
Posts: 2
trailrunner51 HB User
Re: Child with Down Syndrome experiencing difficulties

Anyone else out there have a young adult with DS also having been diagnosed with HE? We are almost two weeks into treatment. Treatment initially was 1,000mg IV steroids for 5 days and now sent home on 60mg daily oral. She started symptoms in October of 2014 with fatigue, lack of speech, extreme insomnia, frothy saliva. Then in December of 2014 she had a severe headache, hearing voices, hallucinations and paranoia. She was admitted to the hospital and received a diagnoses of PTSD and sleep deprivation. Her conditioned worsened with cognitive decline even after the sleep deprivation and other symptoms seemed to resolve. After seeing many many doctors for every symptom, we made an appointment with Duke University Neurology clinic in Durham NC. They read over her extensive prior lab work (Grave's disease, high Thyroid Peroxidase antibodies, High C-reactive protein levels), considered her level of functioning prior to her decline(was a senior in a college program, living on campus and independent) and considered her symptoms. We printed out ******** pictures of her participating in various activities at college because many doctors really do not see those with DS as being very functional to begin with). They made the diagnosis of HE. I would like to know what other young adults with DS and HE course of recovery has been. So far, its been a very slow go for us. Please, please, any of you with those with DS and having been diagnosed and treated for HE, please respond.

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