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The "chronic" thing again....


eljomom

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Been thinking about the "chronic" symptoms, etc....(I know, a shocker there). I am wondering if anyone knows if Swedo, or any other researcher, has separated pans kids into two categories....the ones who truly have pandas-like issues, where they "remit" when infection is cleared, vs. kids where an infection has definitely "caused" the tics and ocd, but where it is more like a trigger that switches on the TS/OCD genes and the kid is "stuck with it." Does that make sense?

 

I know some will think that my dd must still have an underlying infection. We have seen 2 more immunologists....one trained at NIH. He did TONS of bloodwork (B cells, T cells, NK cells, C3' and C'4's just to name a few). And she is showing NO signs of underlying infection or immune dysfunction. He sent us to another immuno. (who is at NIH) and she said there is still more to look at, such as the strep pneumo titers, etc. by revaccinating, etc.... So I do feel pretty confident that we don't have any underlying infection....sorta....

 

Thanks.

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I think most of us would like to think that our kids aren't permanently "stuck" with this disorder, but I've seen the word "chronic" tossed around many times. I'm not sure if any of the practitioners or researchers, though, have used the term consistently, let alone opined upon it in writing.

 

From discussions with folks who've seen Dr. E. at CHOP as well as reviewing Swedo's published opinions regarding PANDAS and its origins, my guess would be that, if and when the TS or OCD type behaviors become chronic, without any significant remission or relief in response to medical interventions (abx, IVIG and/or PEX), then at that point in time, some would drop the "PANDAS" and begin to refer to the patient as having "regular OCD" or "regular TS," etc.

 

For our part, I'm somewhat resigned to the idea that having failed to catch, identify and treat the PANDAS at an early exacerbation and an early age, my DS is "behind" in terms of a return to "normalcy" and a "non-chronic" outcome. He's lived with the OCD thoughts and behaviors for so long that he's probably quite literally developed brain pathways devoted to it. Now, if the docs had listened to me when he was diagnosed with OCD at the age of 6 and entertained and treated PANDAS then, then we might be at a different place today. But they didn't, and we didn't, so we have to play the hand we've been dealt.

 

But notice I said "delayed" and "behind" rather than "unattainable." I do think these kids have something inherently dysfunctional about their immune systems, and I think it remains to be seen whether or not any of the currently identified interventions can actually "correct" that or if all these interventions are just our best attempts at "boosting" or "supporting" their immunity until their bodies mature fully and their systems hopefully self-regulate more efficiently. So now that I know what's afoot, I can see that my DS's "waxing" of his OCD isn't that mysterious, "we don't know why OCD waxes and wanes or what drives those cycles . . . we just know it happens," kind of thing; rather, it is a direct response to having been exposed to bacteria or a virus or allergens. And we help him fight back as best we can.

 

In the end, I expect him to continue to improve. I expect puberty and the hormonal free-for-all that accompanies it is contributing to inflammation, emotional lability and susceptibility on his part, and that will eventually come to a close. I expect that therapy and life experiences will improve his mental and emotional maturity so that, if and when he is impacted by a bacterial or viral onslaught in the future, he'll recognize it for what it is and fight his way through it with increasing measures of grace and awareness. I don't know that it's fair to expect him to ever be entirely "OCD-free," but I do expect that it will diminish in terms of its role in his life as the years go by.

 

So, "chronic"? I guess. Static? No. Hopeless? No.

 

Just my experience . . . .

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In Amy Yasko's book "Autism: Pathways to Recovery" she discusses the "myth of a magic bullet" and suggests that there are multiple issues at play in chronic illness. She states "stress+infectious agents+toxins+genetic susceptibility = health condition". She feels you need to look at each individual and what systems may be awry, then support those systems so that over time, the body can begin to work correctly again.

 

While my kids have made progress over time by treating infections with long term antibiotics and immuno-suppressive procedures, we, like Nancy, continue to fight for 100%. We are certainly much closer now, and in my case, labs support the belief that chronic lyme remains a factor. But I have still been left with the question of why my kids haven't responded the way other kids do. Why do some kids get diagnosed with lyme that may have been there for awhile, go on long term abx, herx, and improve - yet my son herxes so severely that we have to back off? What keeps him "unwell?"

 

In the past 4 months, we have started supplementing with vitamins and minerals. Like Nancy Fxcfxr, we're seeing similar improvements in areas antibiotics haven't been able to touch - particularly brain fog. We have also done two short doses of chelation and seen that mercury may be an issue. So in my family, Yasko's equation rings very true. I have concluded that for us, there will be no "single diagnosis" and no "magic bullet." It is going to take a broader, more comprehensive re-building. There is no single label or disease that fits us anymore. We are not Pandas, not simple chronic lyme, not simply mercury poisoned. Under-methylation seems to be a major contributor but is certainly not the only one. We are a stew of ailments and broken systems that go well beyond infections. Strep may have torn our world apart, but things were likely breaking down before then.

 

Is it chronic? Like Nancy, I refuse to believe so. I do believe it's going to be a long haul. A slow process of re-building and like any re-modeling project, I know we'll continue to uncover unforeseen obstacles along the way. We have not had our last "oh crap" moment of discovery. But I do believe we are getting closer to recovery. It may mean my kids will forever have to take multiple pills of zinc, b6, magnesuim, methylfolate...in that sense, their systems may be chronically disadvantaged and will need lifelong support (unless they miraculously find a love of vegetables). But I do not believe their neuropsychiatric struggles are chronic. JMO.

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