Report Help with 504 in PANS / PANDAS (Lyme included) Posted December 12, 2012 I think many of us have an unusal battle. Because of the nature of this condition - theoretically they are fine when they're healthy, lunatics when they're sick (and I mean that nicely ) , leads many in school to believe it's behavioral. Put that on top of the fact that lots of our kids have good grades, gifted, etc...and are usually very well behaved, and you get the "they know better than to behave like that" issue too. I've always tried to take the behavioral aspect out of it when describing PANDAS for the school. It's rheumatic fever of the brain - period. Brain gets inflammed - period. When brain is inflammed these are the "symptoms" that present - period. I purposely try to avoid using the word "behavior". The OCD, ADHD, ODD, Tourettes are "symptoms" of the disease - just like fever, sore throat are typical "symptoms" of strep. From there, you just need to focus on how it impacts them academically because that's all they care about (learned that from deailng with my youngest). My youngest is 5, was dx at 2, and transitioned into the school district at 3 from Early Steps - so we have his IEP in place for when he starts kindergarten next year. But considering he's already reading WAY beyond a 1st grade level, doing complex math etc...we expect to have this same problem with him over the years. His current teacher and I have already discussed the appropriateness of adding a behavior plan to his IEP - and it will likely happen next year for K; but as a tool to help him self-regulate. A reminder of what he's supposed to be doing vs. consequences for anxiety. He has spent 2 1/2 years in a special ed pre-K where he has THRIVED and will start K at a charter school with my daughter next year When she was dx, our previous experiences dealing with his IEP helped us deal with her school - and we had very little problems. This year, they already told me there are 2 other kids with PANDAS at the school other than my daughter - and it was the information WE provided to them about her that helped them through the proccess with other families. I do still worry - on a scale of 1-10; my son is a 10 when he's symptomatic while my daughter, at her worst is maybe a 4-5. They have no idea what's in store for them when Hurricane Broderick hits next year! airial95 - I like your suggestions on how to present symptoms in a matter of fact way and your idea of being to the point about what he needs to be successful academically. I am glad your little guy has got a great plan in place. I am sorry you are having to deal with 2 children with this. Thanks for the info on your son's plan - I like the self regulation wording. The teacher has done a great job of making modifications already for my ds, we just need to get it all into a 504. I feel more confident about getting this plan done now that I have some great suggestions. Thank you.