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Going on 3rd year with PANS/Bart diagnoses for now 12 yr old and Pandas/Babs for 22 yr old. Tired, tired tired! We have done months and months of anti B's and gone to top Pans docs here on East Coast and several diff LLMD/LLND from here to Connecticut. All sincere decent doctors who seem to care but make it clear that ultimately "they just know what works completely"! My kids are guinea pigs for meds, herbs and Methly supplements on a regular bases. It's Auto immune encephalopathy, post infection encephalopathy or reoccurring encephalopathy. Pick one or all of the above! We did Anti b's until their stomachs got turned inside out (stopped the raging thankfully) then moved to herbal Byron White and Buhner protocols. Some success here and there but ultimately life is gone as we know it. My eldest can only go to college a course at a time but even at that feels tired and overwhelmed often. My little one has had NO school for 2 years now and went form straight A student to IEP special Ed a few hours a week if we are lucky. No covered dishes come to the house only naysayers and doubters. Thankful we have a supportive family that listens with sympathic but helpless ears. It's best, I find it best to just keep quiet about the illness and be vague because most people don't understand and don't want to.Including the pediatricians or GP's that we need to go to on occasion. The best (worst) part is that most of the entire medical community involved in this mess have different strong opinions and protocols. One says, " take this and that", others say "oh no that's hard on kidneys or liver" another says" give methyl B's only to quickly say stop methyl B's. Treat parasites, don't treat parasites Blah, blah blah. I actually had a phone consult with our Pandas doc who very honestly admitted that all the anti B's may ultimately not be the best for the immune systems in the long run. That's after I spend $800 for the phone consult! He clearly admitted sadly that "he just doesn't have any idea in the long haul and that we are all in the genesis of this disease unfortunately . Forget the money we spend on all of the docs, meds and herbs. The marital stress it puts on us is unbearable. I attempt to go to Gym , pray , eat right and so on but what mom really wants to spend time on herself when her children are constantly telling her "I DONT'T FELL WELL!!!" I am thankful that the raging is gone but both children are NOT thriving they are just surviving! If I had unlimited resources I would keep going and never stop until they healed but we are depleted and need to make 2016 the year that we just adjust to the NEW NORMAL!! Did I say I was tired?