[laddad]

My direct experience backs up your conclusions. My 8 yr old daughter went from sweet, confident and carefree to, overnight, crippled by worries about germs, wetting the bed and screaming about everything. From there, she rapidly descended into what I can only describe as being possessed… hallucinations, erratic and sometimes violent behavior, refusal to eat and so on. We did a spect scan which showed her basal ganglia lit up, a condition uncommon for her age, so the doctor said to suspect infection. Sure enough, her blood work showed that she had active strep and mycoplasma infections with no traditional symptoms (fever, etc. ).

We then embarked on a hellish journey of long term antibiotics, countless ivigs,plasmapheresis, multiple shots of rhituximab and endless battles with the insurance companies. Even after her blood work finally improved (and her psychosis diminished) she still experienced crippling OCD. Her care team at Stanford explained that her immune system had been attacking her brain and that if the condition is not caught quickly enough it is often necessary to re-train the brain, similar to the case of a stroke. We sent her to a residential facility in Wisconsin, Rogers Memorial, for 4 months and they did an incredible job bringing her back to about 90%. At this point, she is still on long term prophylactic antibiotics - the same protocol as for cases of rheumatic fever - and is doing well.

We met other families with kids at Rogers who did not improve even after 6 months of intensive treatment there. In one case, this was because they did not address the active infection in their child. Our anecdotal experience leads me to believe that it often takes a combination of intensive immunotherapy and brain rehabilitation to get the poor souls afflicted with this terrible disease back to baseline. There are now several research facilities popping up around the world (USA, Sweden, China) trying to improve upon the protocol used to treat this. Hopefully the process will continue to improve and these cases will be caught sooner and require less treatment than my daughter did.

[drogonmead]

Glad to hear your daughter is doing so much better, and it's fortunate that you're near Stanford. We're going through this right now. A little over a year ago, my then-6-year-old son caught a fever and quickly lost his mind. It felt a lot like demonic possession. He progressed from OCD to psychosis, eventually losing all of his language and academic abilities. Experiencing this as a parent has been horrifying.

To compound things, many medical providers either don't believe in or don't have experience in treating an autoimmune encephalopathy (brain inflammation) when there are no known markers for it (they've only identified around 18 antibodies for this condition, but there are likely thousands). There's also still, in the minds of many providers, an arbitrary distinction between so-called organic (i.e., coming from the organs) and psychiatric pathogenesis. (As an aside, the first comprehensive guidelines for treating PANS were published only last summer (https://home.liebertpub.com/news/revised-treatment-guideline...)

Anyway, my son has received steroids, antibiotics, IVIG, a tonsillectomy and, just this past week, plasmapheresis (to say nothing of all kinds of exotic supplements prescribed by our more fringe providers that, I think, pretty much have no effect). We've never been able to identify a specific infection at the root of this, although staph has been suspected at times. Post-plasmapheresis, he's already progressed to about 50% of his baseline. The next step will be either more plasmapheresis or rituximab.

[laddad]

Yes we feel fortunate to be near Stanford. During the plasmapheresis procedure our daughter was intubated for 5 full days, which was necessary due to her psychotic state. However, when she woke up she had to endure several days of dealing with fentanyl withdrawal (180+ heart rate, severe hallucinations, etc.). After getting through that, her psychosis was gone but her OCD lingered. In our case the PEX wasn't quite enough so they did several ritux shotx. FYI - the latest thought is that rituximab is most effective when combined with methyltrexate, but not sure if the data on that have been published yet.

Through it all, I've learned much more than I ever wanted to know about horrific medical conditions, the latest research on systemic inflammation, psych meds, navigating medical insurance claims and who my real friends are. As an app developer, I tried to do my little part by releasing an iOS app to help track it all, but that doesn't feel like enough. Now I have some degree of normal back in my life, I'm looking into other ways to reach out and support those going through what I did, so feel free to reach out if you have any suggestions.

[drogonmead]

That sounds awful. I'm so glad she came through. Thanks for the note about ritux. Honestly, the neurologist we're dealing with hasn't had a lot of cases like this, so any more info we can get is helpful. It's been interesting to be in a position where I've become much more familiar with the literature than almost every doctor I speak with.

Although we're still in the thick of it, I also want to find ways to help others and have a few ideas. An email address (anonymous on HN) is in my profile if you'd be up for connecting.

[laddad]

sounds great - will drop you a line.

[sizzle]

Hope your daughter gets better soon. Have you thought of writing a blog or journal? I think this info will help other parents in search of answers that aren't able to get their child in cutting-edge medical facilities.