Dr. T's latest

[LNN]

(pyroluria v. yeast) but the same result. It's a fragile recovery...but this time - for the first time - it feels sustainable and that we'll get it back if/when he hits blips. Because we (think/hope) we've found the underlying weak link in the armor. If we strengthen that, he becomes less vulnerable.

 

LLM -- are you saying you think the pyroluria is the weak link? or are you not willing to make such a statement anymore -- is it just one and there is no THE?

 

Knowing that what I think today will be different than what I think 12 months from now...right this moment, I think there is no single THE culprit. I think, at least for my son, it's that A+B+C+D = Linda Blair Syndrome. When we took away C and only had A+B+D, we got Sh*t on toast syndrome, which was bad, but better than LBS. When we treated D and only had A+B, we got something less than SOT.

 

So I guess what JAG and I have both seen is that probably every PANS kid has some sort of infection + inflammation part of the equation. But if your kid doesn't respond 100% to abx and/or a second or third Pandas treatment or lyme treatment or myco treatment...then maybe you also have a C + D to your equation. Doesn't mean you were wrong to treat A + B. Just that you're not finished until you also find and treat C and/or D.

 

For my son, pyroluria was an underlying problem - probably something he always had. But as long as everything else was ok, it wasn't catastrophic. Then add infectious insults, which bring detox issues...and life becomes a nightmare. So for me, it's become an excavation project. Treat one thing and see what's left. Treat the next big offender and see where you're at. So there's no single issue. Just bigger and smaller pieces that all come together. Does that make sense?

[MomWithOCDSon]

(pyroluria v. yeast) but the same result. It's a fragile recovery...but this time - for the first time - it feels sustainable and that we'll get it back if/when he hits blips. Because we (think/hope) we've found the underlying weak link in the armor. If we strengthen that, he becomes less vulnerable.

 

LLM -- are you saying you think the pyroluria is the weak link? or are you not willing to make such a statement anymore -- is it just one and there is no THE?

 

Knowing that what I think today will be different than what I think 12 months from now...right this moment, I think there is no single THE culprit. I think, at least for my son, it's that A+B+C+D = Linda Blair Syndrome. When we took away C and only had A+B+D, we got Sh*t on toast syndrome, which was bad, but better than LBS. When we treated D and only had A+B, we got something less than SOT.

 

So I guess what JAG and I have both seen is that probably every PANS kid has some sort of infection + inflammation part of the equation. But if your kid doesn't respond 100% to abx and/or a second or third Pandas treatment or lyme treatment or myco treatment...then maybe you also have a C + D to your equation. Doesn't mean you were wrong to treat A + B. Just that you're not finished until you also find and treat C and/or D.

 

For my son, pyroluria was an underlying problem - probably something he always had. But as long as everything else was ok, it wasn't catastrophic. Then add infectious insults, which bring detox issues...and life becomes a nightmare. So for me, it's become an excavation project. Treat one thing and see what's left. Treat the next big offender and see where you're at. So there's no single issue. Just bigger and smaller pieces that all come together. Does that make sense?

 

LLM --

 

Really love your analogies! They paint a clearer picture for me than any of the scientific research ever could. And I think your description of moving from LBS to SOT to something less than SOT but still not "quite right" (what memorable description would fit that? You're the wordsmith here! ) is also an apt description for what we've been through with our DS over the last 2+ years. Very true and astute!

[kim]

Hey, No Fair!!!

 

I was almost ready to post a bunch of confusing links and stuff about Syndrome of Opérculo Torácico (SOT).

 

You guys were just baiting a research junkie weren't you!

[Fixit]

Hey, No Fair!!!

 

I was almost ready to post a bunch of confusing links and stuff about Syndrome of Opérculo Torácico (SOT).

 

You guys were just baiting a research junkie weren't you!

 

Cute