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Having spent 18 months with out getting any significant help for my 10-yr-old son who continues to display severe to mild Pandas symptoms, I am completely frustrated and "done" with our Kaiser doctor. She brought up the possibility of Pandas at our first visit, however, just as quickly ran as fast away from it as she could. We've tried to deal with the symptoms to some degree, like trying stimulant meds and talking to a therapist. I have to admit that I haven't been willing to go through all the steps she's suggested, such as seeing a psychiatrist and sensory therapist, checking blood for things like high copper. It all just seems ridiculous to me to jump through all these hoops, but perhaps that's why she isn't willing to diagnose Pandas, since we haven't ruled all her other ideas out. Nevertheless, I don't believe she will help us move forward and my son's severe episodes are getting worse and harder to live with. Our family is suffering. We aren't getting much sleep, and my four kids no longer like each other much -- all because of our one child who is sick, very sick. So my question is this, if you have a doctor who won't help with a pandas diagnosis, then what are the steps to take next? I don't know where to start. We are in Denver, so I'm hoping someone out there knows of a doctor who has experience with Pandas instead of looking at me like an over-emotional, internet-diagnosing crazed mom. If so, does Kaiser ever refer outside their docs? Do I ask for that? Can I? Also, what can our family expect to spend if we have to go outside of our insurance? Should we expect that this will be a real financial strain? We are willing to do whatever it takes...I just wondered how to break it to my husband:) I've reached that point I'm sure some of you can relate to...when the disbelieving doctors no longer have a hold on me. I'm done, finished, and moving on.
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- Denver Doctors
- Kaiser
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