mild mild PANDAS?

[Broo100]

Besides my 11 yo Pandas boy I have two girls. They have transient eye blinking and small tics that come and go. I frequently wonder if they have a much milder form of PANDAS that comes and goes whenever they have a bug. Is this possible? And could it be possible that it just stays this mild? In fact, Could most transient tics actually be the body fighting off infections?

[Mommy2MCL]

Our PANDAS doc drew blood from the whole family. My PANDAS daughter has PANS from a Mycoplasm Pneumonia infection. Her younger brother had higher IgG and IgM Myco numbers. He does not seem to have PANS but I now know to watch him incredibly close. With my daughter we have seen worsening symptoms each time she has flared. I can't imagine her after years of this. Luckily we are treating and hopefully on the right track.

[airial95]

Keep a daily journal for all of your kids documenting behavior, tics, and anything they may have caught or been exposed to. It will be invaluable in the long run. My daughter started out with very mild symptoms - basically increased moodiness - she would cry if you looked at her wrong. It would be around for a week or so, and go away on its own. It always coincided with a bad flare for her brother, so initially we thought it was attention seeking behavior (Her brother was 26 months at dx, she was only 3 1/2 at that time - so that was a real possibility). Eventually, we realized that whenever her brother had strep, she more often than not did too (always got the whole family swabbed). She would be treated with at least 20 days of abx (precautionary to make sure she cleared for her brothers sake). Eventually, I suspected that we were seeing mild PANDAS - everyone thought I was nuts. But finally, when she started K, her brother got strep. With the hustle and bustle of her starting school, we didn't get her into the ped right away, and within a couple of days her moodiness blew up into full on fits and tantrums. No one could deny it any more. Sure enough - she had strep, and within 2 weeks of abx, she was back to herself. She stayed that mild almost 2 years - until the end of 1st grade - then she got worse.

 

But what helped me identify the patterns early on was as soon as I suspected (even though everyone thought I was nuts), I started a journal for her too (already had one for the boy). Her case was so mild, it likely would've been overlooked for years if we didn't already have her brother and know what to look out for, and compared to him - even though she's gotten worse, it still is mild. But early intervention is HUGE for our kids.

[JoyBop]

So true. I need a pep talk because I have quit journaling with all the stuff I am dealing with the school. I feel burned out, but I know this will help yield future answers.

 

Thanks fir the reminder if the importance of journaling.