memom Posted February 2, 2010 Report Share Posted February 2, 2010 I wanted to give an update on my ds20, where we've been and where we are now. Since it has been several months since I posted wondering if the struggles we've had over the past 4 years with my son could be Pandas varient, I will do a brief (ha, if there is such a thing) update on history. Sister 17yo definite Pandas probable onset late elementary school/ early middle school with severe OCD and some choreaform movements. Effective Pandas treatment began this August and is responding to T&A, steroids twice, full strength antibiotics and hoping for IVIG sometime before summer to get her back to 100%. Now pre IVIG at 70% tapering off second round of steroids. DS20 sudden onset symptoms at 16yo end sophmore year high school. Had been good athlete, great student, self starter, motivated young person. Had hopes and aspirations of further education. Taking honors classes pulling mostly A's. Sudden onset depression/ anxiety, fatigue, mental fogginess, difficulty processing, rage and anger. No life trauma's to consider for triggers. Grades started falling off, athletics stopped. Weight loss, stomach pain. Sister at the same time ramping up with OCD, recurrent strep infections. Approached it with mental health arm of healthcare system (had never even heard of Pandas at this point and for the next 3 years). Psychiatrist diagnosed anxiety and depression. Began meds. No big help. Still felt anxiety, mental processing difficulty, depression and stomach issues. Stopped meds after about a year, and tried to muscle his way through his senior year. Was able to apply for colleges and was accepted on acedemic scholorship to a good 4 year college. Around graduation in June, sister got another strep infection and exploded with her own symptoms over the summer. DS20 left for college in August off meds and with some anxiety and worry he would be unable to handle the work. By October in full crisis at school 6 hours away. Unable to get to classes, further weight loss (120 lbs as a male 5' 6") due to anorexia from stomach pain, tremendous fatigue, severe depression, panic attacks, total mental fogginess and inability to write a paper or understand the coursework and dilated pupils. Started counselling and meds in hopes to keep him in school to complete the first semester (Pandas still unknown to us). Pulled him out and home about 2/3rds through the semester on medical leave. Restarted mental health care with a different Psychiatrist and psychologist with regular visits and living at home. Took meds until weaned himself again this summer as he felt they were not really helping. Tried an introduction to Botony class at a local college in September and completely was unable to process his thinking to allow for learning despite tutoring trial. It reminded me of what his sister's mental processing was like during her worst with Pandas. With a shot in the dark, I started piecing the puzzle together and wondered if he also was struggling from a form of encephalitis and decided to get his Cunningham test done and strep titers. Strep titers all elevated and elevated Cam Kinase at 158. Anti neuronal antibody titers all high end normal but normal. Begged a local doc to start him on Zith for 60 days while I did more research. Found Dr. K.'s information on adolescent onset and it fit pretty well. Two weeks ago had a phone consult with Dr. K. for both kids but mostly ds20. He agreed with my thoughts and changed his meds to Augmentin 875 twice daily and 5 day steriod burst (Augmentin for only 4 weeks then stop). What we have seen for response has been nothing short of amazing. After 4 years of going nowhere with mental health approach, within 14 days of Augmentin and 5 days of steroids, we have eye clarity and sparkle, increased energy and drive, motivation, decreased rage, significantly improved communication, laughter and a skip in his step. We are seeing his personality return and are almost giddy. Still present is the almost ADD difficulty in prioritizing and sequencing actions during a several step project and anxiety. The fact that we are seeing any movement in the right direction with this treatment makes me hopeful for him getting his life back (he so much wants to go to college and learn, and be able to live on his own like any other 20yo). A side benefit has been that his sister seems to be responding better to this second dose of steroids since her brother in on antibiotics. I hope that this may help someone else out there think about the Pandas varient. I know most of you have young children, but look at what we have been through when it was not diagnosed early. It does not go away on its own, and significantly interferes with normal learning and life as a young adult. Thank God for Dr. K. and describing and helping us with unlocking what seems to be the key to our son's lost 4 years. I will keep you updated. Ellie Link to comment Share on other sites More sharing options...
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