Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 marenee Hi Everyone, My name is Maree and I have just joined your support group because I really need to speak to other Stills sufferers. My daughter is 27 years old , autistic, epileptic and intellectually disabled. She is a beautiful girl who only looks sixteen! She depends on me for her personal care , feeding and just about everything. Sadly, this year she has spent almost 2 months in hospital very sick with what we now know was the onset of Stills Disease. I can't believe that one innocent girl can have so much happen to her. She has really suffered, endured dozens of tests that she didn't understand and terrified her! In the end we either had to anaesthetize or sedate her for every test that was required. Just the sight of a stethoscope, needle or even just the blood pressure thingy sent her into a frenzy.! I need to try to understand how is feeling, the level of pain that she might be feeling, why some days she won't eat, other days she's ravenous. Sometimes the rash seems itchy, sometimes not! She has lost that carefree look that was similar to a toddler that she used to wear. She now looks haggard and tired. Communication is very poor when it comes to her pain. She could be in agony and I would not really know for sure. Maybe your advice will help me, but I don't care because I know that not feeling alone in this will help me immensely. I'm glad that I found this group ... I know it will keep me sane..... Regards Maree and Bottom of Form Quote Link to comment Share on other sites More sharing options...
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