melanie Posted May 23, 2009 Report Share Posted May 23, 2009 Hi, Kim: We had IVIG in October with Dr. K. Our son was 12 at that time. Saw dramatic improvement for first 3 weeks, more gradual improvement for next month, things stagnated in month 3, then he caught an infection (sinus) and things started downhill in month 4. Now, 7 months post-IVIG, he's had his 3rd major exacerbation and we're back in the "nightmare zone." Original symptoms (in Summer 2007) were tics (motor, no vocal), joint pain, muscle weakness, emotional lability, cognitive impairment. Symptoms after August 2008 exacerbation were more classic PANDAS: violent overnight explosion of OCD contamination fears, urinary frequency, wildly dilated pupils, separation anxiety, anorexia, worsening motor tics plus a new vocal tic. Third exacerbation has been mostly OCD (but severe) plus worsening of tics. We were supposedly pre-approved by our insurance co, using Dr. K's diagnosis and procedure codes. However, 7 months later, they still have not processed the claim (and we had to pay up-front in full... ouch). Don't know why: every time I call them, I get a different story. Have to try something, so we're going back to Chicago on 6/11 to do IVIG Round 2 with Dr. K. (Have spent 6 months trying to get a local doc to order it for us here in SW Michigan, but no luck, and we've given up.) Hope that helps. Don't mean to be discouraging: a number of folks on this forum have experienced permanent improvement after IVIG. Our son just wasn't that lucky. Im going to do a phone cosult with dr k I have to foward him some info first >Has anyone done this his secretary said my insurance should cover it does it? Info please Link to comment Share on other sites More sharing options...
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