3Peanuts

Your story is exactly my story!!! The good news is you will get help fast and won't be waiting for years and get wrong diagnoses that will hurt your dd! Rages (I mean the attacking and hurting others out of the blue) are usually associated with lyme I think. Get to a PANS specialist and a Lyme specialist. Can you travel to St. Louis? If so, Dr. Tracy Fritz is the whole ball of wax! One stop for food, allergy, stool, infections, lyme, etc! If you want the Michigan Doctors just ask to join the private Facebook page for pandas support. Pm me if you can't get to it. Kristen the moderator is wonderful. Dr. Williams at Childrens will do IViG but criteria is different then a "pans" specialist. I was very surprised at how much he can help us though.. these docs to keep evolving. You will get your daughter help fast! In the meantime, you can consider gluten free, casein free (Feingold diet- no food additives), probiotics, fish oil, vitamin D (need to check levels - hope your doc checked that) don't worry if strep is negative! Lots of other triggers involved in PANS! Dr. Trifeleti will get you a phone appointment quickly and will order lots of testing. That may get you started before your October appointment! Meletonin and benedryl with Advil will help w/ rage. She doesn't mean it.. She truly can't help it! Hang in there! Don't give her anti psychotics /mood stabilizers/ it will get worse. Epsom salt baths.. Tell her she will get better! Let her do what she wants if safe.. This is when you need to walk on eggshells. She needs you too! tell her a tiny part of her brain is swelling and causing the rages.. They are like siezures and they will go away when treated properly. You didn't waste your time at your unknowing doc.. Just keep on going. Call home when she is all better. He can help others when he learns from you! Of course I can't know for sure the cause of your Dd rages but boy it sounds like our story. Except our story happened three times right in front of our eyes for three daughters. If I can make it.. So can you! Keep praying!! Find a pans mom friend. Other moms/ relatives will not cut it right now! Go to a support meeting - even if the house is falling down!

Considering plasmapherisis for my daughters (3 with PANS 13,11,10), oldest dd worst rages. All homebound again after some IVIG success. Powwow, I would love to hear about the additional testing that led you to an additional autoimmune dx. I still feel like we have not gotten to the bottom of this nightmare we are fighting x 3! Not sure how to private message. Thank you for sharing your plasmapherisis experience.