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afsml

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  1. Does anyone have experience with rituximab? Our son experienced a flare post 2nd treatment. I am wondering if others have had any experience with this med. Thanks in advance.
  2. I am sorry to hear about your struggles. I really sounds like some of the behaviors are OCD like in nature. It also really sounds like it could be PANDAS. I recommend that you find a PANDAS Specialist ASAP. My son is now 19 and is being treated. He went undiagnosed or misdiagnosed for a few years. Feel free to PM me.
  3. hi there, Since your cases was sudden onset if tics you may want to explore the possibility. Have you discussed PANDAs with your health care provider? Many times we can not identify the infection or agent which triggered PANDAs. Also strep is not the only infection which has been linking with PANDAS/PANS. Many cases go undiagnosed or diagnosed as other disorders. It may be worth talking to your doctor. You can also look for a PANDAS specialist in your area. Good luck.
  4. Need advice about best place if hospitalization needed. Current flare severe. We are trying to manage at home until IVIG. Need a plan B. Also looking for advice on best provider experience for second consultation. We are pleased with our current Pans Provider but want to make sure we didn't miss anything in the testing. Thanks in advance!
  5. What is the significance of a "not likely" cunningham panel. If the initial flare was over a year ago is it possible that the cunningham changes with time? My son met the clinical criteria for Pans/Panda's 1.5 years ago. Recently had the panel done with no definitive result. Any thoughts?
  6. Wondering what is the range of aggressive rages people are experiencing/observing with pandas? My teen son turned from honor student (now with Pandas) to someone with frequent fits of rage at home some of which can be quite violent and abusive especially when his anxiety is turned up to high and OCD is out of control. With this short fuse a lot of swearing and aggressive language occurs especially with this flare up.
  7. Sorry about your experience. So far Dr. T is one of the only MDs who responded promptly for my pleas for help. He gave valuable advise and helped me get started in getting treatment for my son. I would discuss your concerns with Dr. T. So far I have found him to be caring, patient, very hard working and truly committed to helping people.
  8. Hello. I am new to this forum. My son is starting on abx treatment this week for Pandas. It was recommended that I log his response. I was wondering if there was a standard or verified tool for tracking symptoms. I am currently using a simple excel sheet and plan to use the Yale OCD scale. Any suggestions for logging/tracking symptoms? Thanks.
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