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Sonshine

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Everything posted by Sonshine

  1. Thank you for reply
  2. DS has a positive lyme culture from Advanced Lab (picture of spirochete) Have any of you had a positive culture with all other testing negative? How reliable is this test? Waiting for results from Quest/MDL and not sure what to expect.
  3. DS16 had first flare at age 10 with coxsackie and strep. Sudden/severe onset OCD, behavior changes, anxiety, new onset bedwetting, extreme separation anxiety (school refusal) and all the rest. Treated with 10 days of penicillan. Pediatrician suspected PANDAS and advised this was the only treatment available at that time (2008) In retrospect, there were less severe flares at younger ages with impetigo, sinus infections, etc. One flare included tics which resolved and never returned. Several less severe flares between ages 10-13. Most severe flare to date with myco p and strep at age 14 with sudden onset OCD/Anorexia, anxiety, new onset bedwetting, hospitalized for 2 weeks and now in remission. His treatment so far has been a regular course of antibiotics from pediatrician when an infection has been diagnosed and 4 months of Clarithromycin a year ago for myco p. Currently not on antibiotic. We have an appointment to see Dr. F and Margo T. @ Stanford next week. We are living in fear of another flare due to the fact that the last one was life threatening. What treatments should we consider? Also, positive Lyme test (Advanced Lab) I'm hoping some of you who have received more treatment will weigh in on what we should be looking for treatment wise. DS has returned to close to baseline with each previous flare, but this last flare not so much. There is a much higher level of ocd remaining. This is a high school junior looking toward college. Another flare of that magnitude will alter the course of his life. Thank you for this forum and any advice you can give.
  4. My son had what we now know was his first flare with impetigo (strep infected skin) at age age 5. He also became asymptomatic with minor flares until diagnosed at age 10 with severe sudden onset of OCD, separation anxiety, sudden onset bedwetting, and all the rest. This was in 2008. I wish we knew then what we know now about PANDAS. Doctors are getting involved in preventing future flares. The most recent information is available at pandasppn.org There is a flowchart to diagnose and treat PANDAS. If your doctor has not seen this, he may be very interested. Wishing your family the best.
  5. Has anyone seen Dr. Frankovich? We have an appointment in December and I am wondering what to expect at a first appointment.
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