What do you think?

[MMWG]

Hello friends--

Here I am, back again. We still haven't totally pulled out of the very bad exacerbation we had in Sept when our son (age 6) started kindergarten. We pulled him out after 2 weeks and have been slowly trying to get back to our normal since then. This time it has required him taking some low dose anxiety medicine as well as start some medicine for adhd. We proceeded cautiously with them but have found they both have been somewhat helpful.

 

One of the things that I always notice about our PANDAS is that the anxiety/OCD/adhd/whatever tends to manifest in a locked-in defiance. I used to interpret it as naughty, even though he would feel horrible about it afterwards. He would be able to tell you before and afterwards what he should and should not do, but in that moment, there would be nothing you could do short of "shocking" him out of it--we have tried reasoning (no deal), all good solid parenting techniques, and for as long as I can remember, only something dramatic would snap him out of it--a spanking, screaming, or a huge loss of big time privileges (nothing subtle or psychologically reasonable would do it.

 

When he would demonstrate refusal at school, we would initially respond by punishing him, and then finally realized the refusal was a manifestation of severe anxiety--a fight or flight response. His school director, who is also a school psychologist, was the one who pointed out to us that there was nothing intentionally naughty about what he was doing--that he seemed locked into having to refuse or leave a situation--almost like he was terrified to engage or comply. Like in that moment, lack of compliance was a compulsion. He had to resist. That is when I started to think it was more of an ocd/anxiety pattern. We ran it by our pediatrician, who also treats his PANDAS, and he agreed.

 

We are homeschooling him now. Our pediatrician deferred to our judgment about this decision, but also talked to a PANDAS expert (I think Dr. M, not 100% sure) that he knows about our kindergarten experience. She told him that if we could swing it, homeschool may be best for him til he is older--3rd or 4th grade--because his immune system may be stronger then. I believe the rationale was that with every exposure, his baseline antibodies rise, and too many exposures make it tougher each time to bring that baseline down. I felt this rang true for us--each exacerbation seems tougher to get out of, and this last one has been the worst.

 

He is on preventative antibiotics. He went off of them for a week because he was having stomach problems, and then was back on them again. His exposure to other kids is pretty limited--he just started wrestling, and we try to have a playdate each week--we also had some family here for Thanksgiving.

 

ANYWAY (sorry, this is not flowing coherently)--this past weekend he threw up at my in-laws (only the second time in his life), and has in general been ornery the last week or so. I figured his stomach bug may have caused some inflammation. Tonight it was time for his bath (which happens every night) and he refused and locked in--ran to his room, shut the door, and no matter what I did, he would not get in that tub. He loves taking a bath. I stayed calm and told him to unstick his brain and think about what was going on, but he was too far gone. He raged and refused and it wasn't til I grounded him from his video games for 2 weeks that he got in the tub. I thought that would be it, but the same thing happened again when he had to brush his teeth (which usually is no problem) and when he had to take his medicine (usually no problem). Even getting into bed. He kept saying his brain was broken and asking me to help him fix it so he could get his video games back.

 

I have seen some good discussions on here about defiance and resistance. I know some docs would say this is oppositional defiance, or something like that, but I really don't care what it would be called. I think all labels become meaningless in our world--to me it all stems from inflammation in his brain, manifesting in all of these ways--adhd, anxiety, ocd, defiance, whatever.

 

My question is: do we need a strep test??? Since we went on the abx, all our strep tests tend to be negative, even when something is obviously wrong. Our doc says it's still possible to catch strep while on abx, and that it might throw off the culture.