it was effing PANDAS

 For several years, we have been struggling at our house.

I haven't really let on because I just couldn't explain it. Something wasn't right, but no explanation fit. 

My beautiful boy was not thriving. Physically he was not putting on weight or growing, and his mental health was deteriorating.

We ended up with an ASD3 diagnosis at the age of 8 despite no early childhood concerns. His psychologist at the time suggested it might help the school have more compassion for the inexplicable and unpredictable behavioural challenges he started to have in his second year of school. 

And I had my own reasons for pursuing this, too - NDIS funding, to pay for the sessions I wanted to have with the only clinic I could find that would look at DNA, microbiome, and other things to try to address root causes. I was on a mission for that root cause. 

But we worked with these practitioners for literally years, and despite following the indications based on his microbiome and his DNA and everything like that, we were making no progress. 

It wasn't until shortly before he turned 10 that things came to a head. He had a long febrile illness, and then within weeks developed a set of new onset and extreme symptoms that led me to reach out to his practitioners to ask what was going on and was it the supplements? And they said, "that sounds like a PANDAS flare. Can your GP check his strep antibodies?"

And lo and behold, his strep antibodies were through the roof. ASOT was 2-3 times the upper limit, and Anti-DNase B was 10 times the upper limit. Another test 7 weeks later, the ASOD was higher and Anti-DNase B marginally lower. Two months later, the ASOT had dropped slightly (still over twice as high as upper limit) but Anti-DNase B was even higher than the first test.

These tests are not used to diagnose PANDAS. But the clinical picture fit - sudden onset regressions, separation anxiety, ARFID, OCD behaviours or tics, rages, impulsivity. Suddenly the roller coaster of our lives made sense, and after spending many hours trawling through old medical records and text messages to map out the timeline, we realized he'd been having PANDAS flares since he was 2.5 years old. But because the regressions would come and go, by the time you get in to see a specialist in Australia, we were over the hump. So they would conclude everything was fine. Lather, rinse, repeat.

It has been a whirlwind of grief and anxiety and fear. The research/literature says outcomes are better the earlier you catch it, and obviously we are 7 years behind. I am thankful for all the work we have done on his gut and now we are on our second course of antibiotics that I hope will really eradicate any lingering infection. But anti-inflammatories have helped immensely.

So that's what happened. What we are hoping from the second course is more improvement, especially around the ARFID, which has been the hardest thing because no feeding strategy helps PANDAS-triggered ARFID. It is driven by brain inflammation. 

We have never pursued a diagnosis of ARFID because I have never wanted to pathologise him, which is ironic considering strep is a pathogen. But I am confident that no clinician we could have seen where we live would have ever suggested PANDAS.  It remains a contentious diagnosis in this country. So I pursued allied health instead. And I think if we had not done this we would be in a very different place. For which I am so, so thankful.

So yeah. I guess in future posts I might process some of the things that have happened as a result of this scourge over the last 7 years. And maybe some of our protocols, for posterity. 

For now, I need to go get my groceries and do some meal prep :)