Neuropsychological testing

[LindaMW]

My son has been having more memory, concentration and focus issues this time around. Last year it was classic Pandas, anxiety, OCD, writing problems, sleep issues... This year we do not know what infection we could be dealing with, still in work with doctors, but the issues have all been brain related. I do not see any OCD, some anxiety, but mainly the memory and brain and sleeping, or lack of sleeping.

 

That led to the doctor sending him for neuropsychological testing. So far it has taken two trips because he said his brain hurts when he is taking the tests. Major headache when he is done. We are going to have one more trip next week and they should be done. Has anyone else done this test?

 

I am still trying to get the doctors to test for lyme. Our doctor is contacting Dr. Murphy in FL to see what blood work to run. I just hope this testing is not a waste because it is causing him so much pain. Just seeing if anyone had first hand experience and if it is worth all this struggle.

 

Also the doctor said this could be OCD but more with his thoughts not hand washing or that kind of stuff. But my question to her is, then how come it is only a problem when he has to really think and concentrate like with school work or this test and not when he has to choose what to wear or eat or play?

[nicklemama]

Yes. DS had neuropsych testing almost one year from onset of PANS, before dx, no treatment. It was all day on one day. In hindsight, don't know how he did it. He had strong cognitive strengths. The disorganized thinking, anxiety, etc.....all came out in testing. When I read the lengthy report now, it has PANS written all over. It was not beneficial for school use. No cognitive deficits. While much more detailed, it mirrored the results of psychological testing we had done two months after onset. We were doing this while trying to figure out what was wrong with DS. It also got him dx'd aspergers and bipolar, which resolved after treatment.

[LNN]

A long time ago, I used to ask people here if brain fog was something they dealt with and I'd hear lots of "yes". but then their descriptions of what they were dealing with didn't match what we were dealing with. It was a different degree of impact for my son. Then we found lyme and I read about brain fog as a symptom and thought "aha - this is what we have". But it wasn't. We had lyme but the fog didn't seem to be entirely related to lyme. We were dealing with something different.

 

Finally, we discovered pyroluria - a zinc/B6 deficiency. By the third day of treating it, it was like someone turned on a light switch. 18 months later, we started using phosphatidyl serine - a supplement used for ADHD. Again, someone turned on another light in the room.

 

My point isn't to say your son has the same things my son has. My point is that not everything is Pandas. Sometimes, their bodies are already fighting something else or deficient in something or underperforming in some way and then Pandas comes along and knocks the s*** out of them and we blame it all on Pandas. Then we do all we can to obliterate strep and we're still left with residual stuff - things that may have been simmering pre-pandas. Sometimes you need to hunt beyond pandas for answers.

 

Not discouraging you from testing for other infections or lyme. I would certainly do that. But I would also read up on other issues to see if anything strikes a chord (mold, pyroluria, methylation, oxidative stress, mitochondrial issues...). Keep fighting.

[MomWithOCDSon]

 

 

Also the doctor said this could be OCD but more with his thoughts not hand washing or that kind of stuff. But my question to her is, then how come it is only a problem when he has to really think and concentrate like with school work or this test and not when he has to choose what to wear or eat or play?

 

OCD is wicked, mischievous, insidious and, unfortunately, a Wiley shape-shifter. Because it is an anxiety-based behavioral manifestation, it tends to hone in on one's weak spots or Achilles heels. Your DS doesn't normally experience much, if any, anxiety, I'm guessing, when it comes to making decisions about wardrobe, food or play. So the OCD is not prone to settling in there. Rather, it's picking that spot, those situations in which your DS is less certain and exacerbating that vulnerability.

 

My DS has experienced similar OCD presentations, so I do think that might be part of your puzzle.