We are 2.5 years into PANDAS/PANS. The stories of our journey are mostly unheard (even by the closest of family members), all the million details that have created all the million havoc of our lives.
Looking back, I see the patterns now. I see how changes lead to more changes, lead to more rituals, obsessions, struggles, and rules. As the disease progresses, so must we. Our Dx (diagnosed) son is now 13, and our challenges are different from the initial onset. The food rituals are probably the most notable difference, no longer taking well over an hour from set up to completion, but there are still issues surrounding food – you cannot offer which plate/bowl he will use, and you cannot leave the room during cooking. There are also still complications with people coming over, bringing new items into the house, discussing certain topics, and clothes continually get ruined, forcing us to have to buy more.
But we have learned to go with the flow. We tried in the beginning, what we thought was going with the flow, but it was more like paddling out of a current. We weren’t accepting that we were stuck in the current, and were instead trying to latch onto what we thought would be an easier / healthier direction. We had to do it the PANS/PANDAS way, as excruciating as it was at times.
We couldn’t let go and flow. But in the beginning, how could anyone? Your child is suddenly not your child and you’re supposed to do what they say (demand) or what they need (perhaps want), especially when it means endless sacrifices on your part. No one in PANDAS/PANS has a choice. Not the child who suffers or the family members who live with it. The P/P child does not want to float down the rapids, but he has no choice either, and as his mother, I must follow.
Fortunately, our son recognizes the patterns now, and this is where the rapids became a smoother current. He can tell when OCD is getting stronger, and is brave/smart enough to tell us. Even without his cues, his relapses are obvious. OCD knocks on the door and we have to invite it in. We have to remove objects, OCD proof the house, and watch what we say and do. Patience, love, and perspective are a must. It’s survival mode, and in active PANDAS, the more we fight it, the worse it becomes. So, we put on our life jacket, throw away our oars, and just float the current. Go with the flow. The rapids never last forever.