Difference between "normal" OCD/Tourettes/ADHD/Anxiety & PANS/PANDAS?

[MomWithOCDSon]

Mommybee --

 

Unfortunately, I don't think it's that black and white, and some of the notes you offer, while commonly stated as fact by medical and psych practitioners, etc., simply are not true.

 

"Garden variety OCD," again, assuming there is any such condition, CAN, in fact, be impacted by anti-inflammatory medicines and antibiotics, just as "garden variety OCD" is frequently, also, negatively impacted by inflammatory insults such as colds, viruses, etc. Psychiatrists have reported the latter regularly, and Dr. Rosenberg and others have published papers regarding the positive impacts upon OCD ferocity as a response to anti-inflammatory interventions. Meanwhile, with respect to antibiotics and "regular OCD," D-cycloserine, an antibiotic originally utilized as a response to tuberculosis, has been researched and reported upon for its positive impact upon OCD.

 

We've all heard the "OCD waxes and wanes" mantra over and over again, but none of the practitioners I've talked with regarding this phenomenon can explain why . . . what's behind the "waxing and waning." That is, until our current psych who keeps current on research and acknowledges that, again, immunomodulatory "insults" tend to cause waxing of OCD behaviors, even in non-PANDAS/PANs individuals.

 

Finally, as for PANDAS OCD remitting entirely "only to return again if the child is reinfected," I'm sorry, but I think you'll find many, many accounts . . . here and elsewhere . . . regarding "residual OCD" among the PANDAS/PANs population, particularly in older kids or kids who were unfortunately subject to a significant period without effective PANDAS intervention. Whether that's because the behaviors tend to become "learned" or "habits" that become harder to break the older the person becomes, or if it's because the immunological insult itself is extended or multi-pronged, I'm not sure anyone definitively knows at this juncture. Again, not unlike those who might not have an exceptionally high CamKII measure, or high or rising titers, I feel it may be a disservice to exclude these individuals from PANDAS/PANs consideration and/or interventions.

 

I've met and spoken with Dr. Swedo on several occasions and have tremendous respect for her and her research. But it continues to evolve, as does this field overall. She's learned more over the last decade or so, and as a result, her position on several things has evolved and shifted, as well. Obviously, my view and position is rooted in my family's personal experiences, and I continue to learn more and follow newly-released research as much as I can. All of which leads me to continue to question . . . not definitively state, but certainly question . . . the increasingly arbitrary line between "garden variety OCD" and "PANDAs OCD."

 

Just one mom's experience, reading and gut . . .

[dcmom]

Good topic! I agree with Nancy. I think we are heading toward a time, albeit painfully slowly, where it will be recognized that much or most of mental illness has a biological cause. I wish PANDAS were as simple to diagnose as overnight onset of ocd, and as easy to treat all pandas kids with antibiotics alone. If that was the case, I think much of the medical community would be on board, and this site would not be very active. However, pandas is a messy, messy diagnosis. Many times the diagnosis is missed at initial presentation, because it is mild, the age at which is onsets, and the lack of knowledge/ caring of medical professionals. Then, once diagnosis is made, it is not a one size fits all treatment, and frankly, there are only a handful of practitioners that will even treat!

 

I have two textbook pandas girls. Normal. Overnight onset of ocd, which spiraled out of control over 3weeks until I had a debilitated child, positive strep culture, and thankfully positive response to antibiotic treatment.

 

However, 6 plus years down this road and I am sorry to say, my girls no longer remit with antibiotics. It is no longer strep only which causes their flare ups. They now have a full blown autoimmune disorder which can go into remission, and can flare up, with great unpredictability. We are so fortunate to see an exceptional doctor who believes in us, and treats them thoughtfully, carefully, and methodically. However I will tell you that this last year my older daughter had a horrible flare up causing ocd, and EXTREME depression, which lasted for 7 month, all the while be treated with antibiotics, steroids, prozac, and ERP therapy. Nothing was working. Less caring and thoughtful medical professionals would have told me that this was it, she now had ocd/ depression/ etc. She then had plasma pheresis, and within one month was 100% healed. NO anxiety, NO ocd, NO more depression.

 

How many patients have access to this care? How many of those living a very difficult life with "garden variety" ocd could be freed from their tormenting thoughts with plasma pheresis (a benign procedure)? There is NO ONE out there even willing to try this. Doctors have very little understanding of what type of life they are sentencing their patients to by not being willing to go the extra mile, and don't get me started on insurance companies please.

 

OK- rant over, but to be honest, this haunts me many nights.