And then there are good days (PANDAS Post)

One of the hardest things I've found about the PANDAS world is the good days. It sounds crazy, but it's such a reminder of who are kids are underneath the PANDAS. We'll have weeks where it feels like our children are lost. And then, the stars line up, the antibiotics work, inflammation decreases, whatever they ate didn't feed the inflammation, and our children are back. Laughing, problem solving, being snarky, funny, sweet, trouble makers - themselves. The kids we know.

In the dark times, it can seem as though PANDAS isn't a real thing - that this is just life, and that we've made it up as an escape goat for our struggles. And then, we get them back, even if only for a short time - and we remember that this is a real thing. We didn't do this.

Which means, we can't fix it by punishing the brain inflammation out of them, or by being kinder, more attached, stricter, firmer, have boundaries, etc. that will make the brain inflammation go away.

Every night we sit and think about the day. "What did we do wrong?" "How could we have changed that situation to help her handle the rage better?"
"Did we do this?"
"What did we do to cause this?"
"Maybe if we have firmer limits..."
"Maybe if I quit my job and stay home more..."
"Maybe if we are more understanding..."

While I do think that we improve our situation by reflecting on our day to day interactions so that we become better at helping them emotionally regulate - we can go down a dark parenting rabbit hole.

And then there are moments when we see that we aren't crazy. We didn't do this (I mean, we can always be better parents, but can't everyone?) But we can't punish and limit away the PANDAS. When we see our kids without inflammation, we realize that we are doing OK as parents. They are great kids, and are learning to respect boundaries, be kind, and stay emotionally regulated just like all other kids are.

It's hard to watch them be who they are, knowing that they just missed weeks of this type of typical behavior. They can't get back these years that are being stolen from them by the inflammation. Why can't every day be like the normal days? The age-appropriate trouble maker days, when they act like every other five or seven year old kid?

But I hold onto these good moments too. Because we know they are there, and exist. The sweet, sister laughter from dinner the other night has carried with me all week.