Imaging studies?

[ibcdbwc]

I am curious if anyone in the PANS community has recommended imaging studies and if so do they ever show anything?

 

We hate winter. DS13 goes from an "A" in Algebra 2 to forgetting his multiplication tables and how to subtract when he is flaring. It's so dramatic. The brain fog is truly remarkable.

 

Sometimes I feel like half of this is an act. Maybe he just doesn't want to review math (he's reviewing for an entrance exam in a few weeks). But then I remember. He's sick. His OCD and insomnia have returned and thus basic math concepts are out the window - (replaced with anxiety and tears).

 

How can such a cognitive shift not show up on some sort of scan? On the days that I feel vulnerable - I still so much want some tangible hard evidence to define this ridiculous roller coaster.

 

 

[pr40]

If I understand it correctly, scan registers lesions. if it could register inflammation, you would have your record.

[MomWithOCDSon]

If you run a Google search, you'll come across some SPEC scan studies done out of Wayne State and Children's Hospital of Detroit (Dr. Rothenberger and Dr. Chunagi, as I recall) who found increased concentrations of glutamate in certain parts of the brain associated with kids with OCD. I think Dr. K. has done some work coordinated with Dr. Chunagi and SPEC scans of PANDAS/PANs kids, also, though I don't know if that work is ongoing.

 

Dr. Swedo's scans found enlarged (inflamed) putamen and caudate nuclei in PANDAS patients prior to PEX, which shrunk down to normal size following PEX, so it seems like there may be some connection there between the two studies.

 

Your comments about winter and the timing of your DS's current issues makes me wonder, though, if it might not be about either increased exposure to immune triggers given the colds, flu and closer quarters the winter months bring, or if there might not be some connection between his brain function and a lack of sunlight/Vitamin D? Have you tried anything like a Happy Light (full spectrum sunlight alternative) in his room, especially during the winter months? It may all be psychosymatic, of course, but we've had one for several years now and feel as though it helps.

[ibcdbwc]

Thanks for the replies. I suppose I wonder most why the PANS experts don't mandate imaging studies as an initial screening tool when such dramatic cognitive changes occur. Seems many first line docs either refer to psych OR if they do believe in PANS they might prescribe a course of antibiotics. But what if there were some other ominous cause that was missed. And if indeed there are studies that confirm PANS relatable changes in the brain, you would think researchers would want to collect such data regardless. Hmm perhaps it's cost.

 

Rudimentary scans probably only detect lesions yet inflammation will cause structural shifts that could perhaps be seen.

 

I guess I am on my soapbox regarding stigma. Cancer invokes sympathy. It's physical. There is a tumor. PANS is still in the realm of "mental illness." What isn't seen isn't understood and the stigma is attached because of it.

 

Nancy, your thoughts regarding a type of Vitamin D, SAD component are good ones. Though throughout winter, in between the colds and coughs, DS can be closer to normal. The roller coaster is truly the best analogy. But the dips do seem bigger in the winter.