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Hi, new to the forum but have been observing for a few months. I'm in desperate need of any answers possible. My DD first started having severe OCD symptoms at the age of 7 (she's 17 now). I had no idea what caused it or what PANDAS was. Through the years she has been on every SSRI imaginable (which had very little - if any - effect on her OCD symptoms and gave her suicidal thoughts) , been through ERP and CBT, hospitalized, you name it... In late 2015, an immunologist ran several tests and diagnosed her with PANDAS. Along with the OCD and being prone to strep, she also has insomnia and sinus/breathing problems. The only advice the immunologist gave was for us to get her tonsils and adenoids removed, which we did, and DD got strep 4 times within six months of the surgery. For the past two years, I've been going through doctors trying to convince one of them that DD needs long term antibiotics (we live in a very strictly textbook, narrow-minded location). We have an appointment with a new one this week with a reputation of being progressive and his secretary told me he is familiar with PANDAS. I also recently contacted Dr. K in Chicago who told me DD would most likely benefit from IVIG. Do any of you have experience with IVIG or any words of advice? Did it provide any relief of OCD symptoms? I've read mixed reviews but am willing to try anything at this point. I'm also going to see if this new doctor can test her for Lyme. Another concern I have is that God forbid her PANDAS may have gone too long untreated and she's suffering from irreversible brain damage Sorry for such a big post I am just at loss at what to do here.

OCD and PANDAS Mama -- Our successful antibiotic was Augmentin XR. Regarding psych drugs, I agree with you completely in terms of working on the medical issues first as best you can. We, too, initially had a psych who was all to willing to increase SSRI doses, add other meds, change meds, etc. at all too rapid a pace; like you, we trusted him because he was supposed to have the education and experience. But I think some have either been at it way too long and are now just going through the motions, with a tendency to push whatever the pharm sales rep most recently dropped on them, or they just want to satisfy distressed parents who want SOMETHING that will help their kid be more functional or compliant or calm or all of the above. I truly shudder when I realize what we put my DS's brain through, with this quacky psych messing with his medications as though there would be no repercussions. Once we found PANDAS and started antibiotic treatment, we were able to find a psych who had some PANDAS knowledge, but more importantly, she was intellectually curious and kept up with ongoing research, etc. So she was far more thoughtful and cautious in terms of treating DS and introducing or changing meds. I realize that implementing psych meds during or even following PANDAS medical treatment may "muddy the waters" in terms of completely addressing and/or eliminating the underlying culprit, but we chose our path because our DS was older, had been dealing with all of this longer, and wanted his functionality back almost as much as we wanted it for him. So the psych meds were an important part of that for us. If you decide to return to that route at some point, I would just encourage you to not be shy in interviewing prospective psychs; make a list of pointed questions to go in with, and get some answers. And then you and DD be proactive and participatory in any treatment you undertake in the future, rather than just accepting that because they have a certificate on their wall, they have all the answers. Clearly, they don't. As my dad used to say, "They call it 'practicing medicine' because they're practicing on US!" All the best!