Why do tics from PANS get worse when my son is around our family or other people

[mybabyo]

My PANS 17yr DS has had diagnosed PANS for 2 years. With treatment, we were 90% better for an entire year. He then had an entire relapse when he got chlamydia pnuemonia in November. We have

yet to find the right treatment to put him back in "remission". We have noticed that when he is having PANS tics, they seem to get worse when he is around family and other people. When he is alone they are much much better. Why would this be? What is the cause of this or the science behind it? He doesn't appear to be anxious when around us or other people so why would his tics get worse? I would love an explanation or a link that might explain it for me. Thanks so much!

[dasu]

Do you notice tics get worse with all people?

 

If his tics immediately increase with other people that may be stress. PANDAS children likely will have increased social anxiety which can bring on tics. Mine certainly do, in fact during a flare any activity outside the house or their comfort zone can be anxiety producing, particularly when my sons tic is copralalia.

 

We have also noticed that if we spend time with particular children our kids will show a marked increase in multiple PANDAS symptoms. In fact that can send them on a downward spiral. The social implications are quite sad. I do not understand the science behind this as they show no signs of infection. The notion is that the immune system starts ramping up production of antibodies but it makes no sense without an infection.

[tj21]

I was just thinking about this also. My son (16) flares (tics mostly, sometimes other behavioral stuff) pretty consistently after he returns from a sleep-away camp (monthly, and summers). In general, he'd been doing pretty well 2 yrs. into PANS treatment. So, is it 1) being around many others who no doubt are either strep carriers or have a virus 2) mold and other environmental factors at camp 3) anxiety, or some combo. of those.

 

Doing more labs next week to see if we can catch anything, continuing to work on boosting his immune system, and doing any extra dose of antibiotics as prophylaxis when he's at camp. Obviously you can't do this if your son is around family all the time. I do think my son holds it together with others and lets it go (so to speak) with those he's comfortable around (family).

[5patsfans]

My ds now 13 pans and Lyme has this problem also. I asked his doctor at the time and he said it was adrenaline. It seemed to make sense for him. He would tic really badly when he was playing football, watching a movie or doing things that got his adrenaline going including social situations.

[tj21]

@mybabyo, any progress? We are still experiencing a horrible flare, with horrendous tics similar to when this all first started. ACKKK!!

Still waiting for lab results and to consult w/our provider (but we've been away for a week) to see what we can do to get back to 'remission baseline.' It's so upsetting since we were making such good progress.

Maybe it's hormones too?

Tracy