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teechamp's Achievements

  1. Just received the genetic testing that shows a variant related to CVID. currently has diagnosis of autism/PANDAS-PANS/ OCD/ Anxiety / rages/ so hoping this CVID will get IVIG in place .
  2. I never was one to begrudge anyone else a fun time. I always loved hearing about someone's vacation or trip or great weekend. I was happy they were happy. Now? not so much. I am finding it hard to see the "happy friday" "Looking forward to a great weekend" yadda yadda. .... posts on Facebook. I hate PANDAS and what it has done to my son and our lives. will we ever have a happy day again? I am to a point now, that I doubt it. I value the PANDAS support pages a lot so thank you for this chance to vent here too. I don't want to be a "wet blanket" for everyone else living a "normal" life..... so posting here is safe.
  3. Hi, we just started prozac. (DS20) only 5 ml twice a week. there is also a drug called amantadine that is given to help with side effects of prozac. trust me. I am not advocating any of this. It is just where we are right now.
  4. It takes almost exactly 6 weeks. so send the blood back and then call the doctor that ordered it and make an appt (phone/skype/in person) to get the results. the doctor receives the results but they send you an email telling you they have been sent to your doctor and if you want a copy you have to fill out a HIPPA request form.
  5. Hi there, saw where you are a patient of Dr. L and had plasmapheresis at Georgetown. we are scheduled for next week (March 5) can you give me any insight/tips? thanks, teresa (in VA)

  6. Hi, I am reaching out b/c I have a DS19 that has many of the same items you listed in your profile. (strep , EBV, and CMV, babesia, Herpes)

    so I just wanted to touch base. we aren't doing well at all. thanks, teresa

  7. Thank you so much for your post. I keep wondering if there is any hope. thank you for letting us know there is.
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