Considering PANDAS/PANS

[mrg_111]

So my psychiatrist and I have been investigating the potential of me having PANDAS/PANS. I was diagnosed with OCD at 9 and anorexia at 16 (17 currently). My OCD was pretty quick onset and I’ve had a waxing/waning course of symptoms my entire life. I’ve had pretty high anxiety in general all of my life (predating OCD) and somewhere in my childhood I developed urination problems (frequency, leakage). 

I recently had some blood drawn to check white blood cell counts, IgG, ASO, pneumonia, lyme and EBV and they were all within normal limits. DNase B hasn’t come back yet. It’s been pretty discouraging and my psychiatrists says that things are pointing towards a no for PANDAS/PANS. I think we might get the Cunningham panel regardless of what DNase B is just to know for sure. I’m curious to hear anecdotes about people’s experiences with these labs. Thanks! 

Edited November 9, 2017 by mrg_111

[bobh]

I would recommend further detailed dissection of the "things are pointing towards a no for PANDAS/PANS".  We  have found some in the health care field "play along" with some tests and such, full well planning to say no regardless of results.  Does your psychiatrist have a current PANS/PANDAS caseload of some size, i.e. an expert?  I am coming from a place where I feel I have to "take over" and sift the evidence for myself, and make my own decision (to get a second, third or further doctor's opinion).

[bobh]

The attached is a post about the Cunningham Panel that came from another group.  I always knew that it was not definitive, but this was a bit of a surprise.  It may not be worth spending the money on it.

[mrg_111]

On 11/9/2017 at 1:12 PM, bobh said:

I would recommend further detailed dissection of the "things are pointing towards a no for PANDAS/PANS".  We  have found some in the health care field "play along" with some tests and such, full well planning to say no regardless of results.  Does your psychiatrist have a current PANS/PANDAS caseload of some size, i.e. an expert?  I am coming from a place where I feel I have to "take over" and sift the evidence for myself, and make my own decision (to get a second, third or further doctor's opinion).

Thank you for the advice! Unfortunately, despite being quite an experienced psychiatrist, I’m the first case where he has even seriously looked into PANS. He definitely does believe that in and the treatments (antibiotics, IVIG, etc) though. That’s interesting about the Cunningham Panel. I’m curious why the study’s results are so contradictory to all of the extensive research they did in developing the test. 

[bobh]

Ok.  I would still suggest that if he is not well experienced in PANS/PANDAS, he may not get it right, even though he is otherwise very experienced, smart, etc.  It is a strange and complex thing, and the experienced practitioners know that these particular boxes have been defined initially for research purposes, and then shaped by some strange politics, so that just because a person doesn't perfectly fit the box that has been defined, that doesn't have to mean "no" - the box could be a bit off.

I was also surprised about that Cunningham panel - but I haven't read the Swedish study, or any rebuttals or criticisms of that study, if they exist yet.  I certainly would if I was shelling out the money.  This is another example of the importance of a "buyer beware" attitude - that it is best to educate yourself, if you have the capacity to get into it.  My goodness, this is too much for a 17-year old, especially given that you are also struggling with symptoms.  But you have come here, so you are already on the path.

There is a lot of stuff on the www that you can read, but to give what you might stumble across about PANS/PANDAS some context, the documentary "My Kid Is Not Crazy" might be helpful (that will start to explain the "strange politics").

[mrg_111]

Thank you so much for all of the advice! I looked at the Swedish study as well as some of the more recent work done by Dr Cunningham. I’ve talked to my parents, who already agreed to do the Cunningham Panel, about the possibility of consulting with someone who has experience with PANS instead. I feel like this would be a better use of money and provide a more definative answer. We are going to talk to my psychiatrist on Tuesday and discuss this further. This stress of all this is starting to get to me and just want to know how to best proceed in treatment.