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Completely understand - have you asked around here for any PANS/PANDAS Dr's in TX??

Highly recommend scheduling a visit with Dr. Trifelleti (or another Dr ppl may recommend on here). He's the one who ordered all of the tests, even genetic ones, and eventually figured out what was going on with me when nearly every other Dr told me to get CBTherapy. Gee, thanks. Btw, I had been doing CBT and it was not helping. Also, when I indicate pneumonia was likely my trigger, that's also known as myco p (mycoplasma pneumoniae).

I'm so sorry to hear of what your daughter and you all are going through - it sounds tough and incredibly frustrating. I won't say you're doing anything wrong as I think we are all doing the best we can given the circumstances. I truly feel for your daughter as I have dealt with those horrible OCD thoughts myself - I was dx PANS almost 5 yrs ago (young adult onset w severe anxiety that immediately took hold as the pureOCD subtype). It wasn't strep that triggered it for me either (my guess is it was brought on by the pneumonia I battled immediately before this illness). While I would typically second anyone refusing psych medications, I will tell you that I would not have made it to today without their help along w the help of a great psychiatrist. I guess I'm saying please don't shut the door on the potential for her to find some relief in even just one medicine, if it gets to that point. I know there are potential risks and benefits to each approach, just please keep an open mind. Have you heard of TRS by Coseva, before? I just placed an order this morning and would like hear from anyone who has tried this. If you haven't heard of it nor tried it give it a search. It's premise is interesting and I'm curious to see if it will help me. Btw, I am in no way advocating nor endorsing. Wishing you and your daughter the best. Please give her extra hugs as what she needs most right now is love and acceptance, and to know those thoughts are not HER THOUGHTS, but rather manifestations of the illness itself. They do not define her. She's likely very scared inside - it's hard to understand what's going on (even for an adult, let alone a child). (((Hugs)))

I agree with finding another Dr. who can help with Lyme, yet also support you with other types of medicines (anti-anxiety, anti-depressives, etc. at least temporarily). You don't deserve to suffer like this, no matter what the underlying issue is - and it sounds like what you're experiencing imho IS significant OCD with anxiety and depression. I've been here too, trust me, and the longer I waited to get on medicine (anti-anxiety, anti-depressants, etc.), the longer it took to get to a much healthier place to where I could better handle the issues at hand.

I've wondered about this supplement too! Don't really want to spend the money on more supplements unless I know it's as good as it claims to be. Does the practitioner that recommended it to you have others taking it? Would he/she be willing to reach out to them and ask if they'd be willing to talk to you about their experience with it??

Agree - total crap to portray a serious illness/issue in such an elementary way. Glad to see Diana's response!!

That's so sad! I'm curious to know how the rest of this episode goes...how does it end?

Wow. !

I completely agree with MomWithOCDSon. It's not like anyone wants to be in this situation, but it is what it is, for now. If that means you need to keep him and your family safe, then medicine might be appropriate and as a temporary measure. I used to deal with tremendous OCD and finally found relief with appropriate psych rx's. I was so afraid of having to get on them, but my life would surely be different (worse) for me now had I not decided it was time to put my ego aside and get the help I needed (speaking for myself only here). I hope this helps you, your son, and family ((((hugs)))).

Totally understand this...my DS10 is nearly the same. Although I'm not sure he's PANDAS, but does show some signs of OCD. It's frustrating for sure.

So sorry your family, and esp your daughter, are going through this. I imagine she must be very scared inside, not understanding what's going on, etc. I am an adult with possible late adolescent onset PANS. Hard to know for sure in my case. For your daughter, what kind of bloodwork/tests are being done??

1. Likely a drop in efficacy of the med(s) - needing now a higher dose and/or augmentation with diff meds. 2. Any additional stressors? School/life balance?? My two cents

Hi Wombat140, I have read everything you've written and have tried to help...I'm sorry I don't have a good answer for you, and hope you find the help/answers you need. (((hugs)))

Hi Wombat140! Sorry to hear this is still upsetting you, but it's understandable (unfortunately). Did the suggestions I gave you help at all? Have you recorded yourself repeating the word and listening to it?? I can tell right now the OCD has its stronghold on you with this word. I don't mean to diminish it's power over you in any way, nor do I want to make it seem like it's an insurmountable task to get through/over. You have to start somewhere - what are you thinking of trying?? Take baby steps here, and build your way up. ((hugs))