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This is more about frustration than advice.


I have learned that there are probably another 6-7 cases of pPANDAS at my kids school. But it's always a secret. One kid is in my daughter's fourth grade class and has blinking tics but no OCD. The mother knew of my situation and approached me. They had had successes with abx, the last episode abx didn't work. They had a T&A in January and tics improved slightly and now they are relying only in therapy and possibly tic meds.I told the mother it may be a co-infection like MycoP, she said that her son has had MycoP numerous times, but doesn't want to put him through another blood test. There is another child with a similar story too, but that mom doesn't know that I know and according to a mutual friend isn't interested in research/help.


I guess I find this frustrating because I wish someone had pushed me to check in DS earlier. The nature of mental illness and the secrets families prefer to keep, just means that it will take that much longer for this to be recognized and covered by insurance. In the meantime these kids will suffer and possible get numerous execrations : (



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My DS15 was diagnosed age 13 with PANDAS. 6 months later after seeing 4 PANDAS specialists, and not being able to find the help we needed because he was so chronic and had gone undiagnosed for so long, we ended up at an LLMD who found multiple infections.


My son's medical issues have now become, sadly enough, my hobby. I research, read anything I can get my hands on, participate in this forum, attend conferences, etc. I have the knowledge that mental illness and in our case, autism (Asperger's) has a huge medical component.


Using my gathered knowledge, I look at people with mental illness, developmental issues, etc. through a different lens than I did before my son was diagnosed.


But I have to tell you that before I even learned about PANDAS, I probably wasn't ready to hear the information.


I have close friends who have children with similar issues to my son's. I want them to listen to me. I want to help their children. But they are not ready to hear what I have to say, or they would be searching for more answers already.


My point is this: Everyone is at a different place in their life's journey. People must be ready to want answers in order to get answers.

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I agree secrets is a major barrier. It's also about being willing to take a journey to the unknown. It's so much easier to go the path of least rsistance. Sme people just don't have it in them to buck the system looking for answers. I have a friend who's husband is an MD. He does not practice medicine, he's the medical director of a Heath sciences school for education/training for careers in the medical field. Think respiratory therapist, phlebotomist, pharmacy tech, etc..... They have two girls, one young adult the other in high school. Both have been dx'd bipolar. I think they have a good possibility of PANS. The younger one was recently hospitalized for a few weeks as she had a major setback. While there, her dx was changed from bipolar to borderline personality disorder. The key in get a borderline diagnosis is the feeling/fear of abandonment as a primary feature. This is a girl who was doing well on her bp meds that had a sudden decline, enough to need hospitalization and she was feeling/fearing abandonment, suicidal, raging.. Can you say separation anxiety and other PANS behaviors? She'd been sick two months prior. I think I've got my friend ready do a hit of digging. She had her husband ask the psychiatrist to run strep titers but pdoc said no. She's going to ask the primary care at the next appt. Its taken me 2yrs to get her here ready to do a tiny bit of searching for other answers.


I don't know if her girls have PANS. She lives in CA and I rarely see her. I do think it deserves to be thoroughly investigated. I have to put it away or it would drive me crazy to think about.

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