During each flare Hudson has endured, he has had some of the most articulate expressions and descriptions of what it feels like to be trapped behind the bars of PANDAS. I share these here to give you a glimpse into the thoughts of a child dealing with this, and to encourage you to ask your own child to express to you what they feel like. It’s eye opening and sometimes just sharing these words with your doctor will invoke more empathy.
At the age of 8 (first flare, March 2016), Hudson wrote the following poem:
At the very beginning of his 3rd flare (age 11, Jan2019), he showed me this lava lamp type thing that sits on his desk and said: “When I don’t have PANDAS, this is how I feel (top image): clear-headed with a mind full of idea bubbles.” Then he turned it upside down and explained “When I have PANDAS, my head is full of frightening thoughts and worries, I can’t think straight and all my happy, good ideas are pushed way, way down.”
Several weeks after IVIG2019 (it almost always takes a minimum of 4 weeks for the child to feel ANY relief at all and many more weeks for our son to feel his relief), he was asking for reassurance that it was still normal to feel bad and asked me to promise that other kids with PANDAS have his bad, scary thoughts, as well. To help him realize it wasn’t just mommy telling him these things to make him feel better, I showed him articles I had screenshot for my own referencing (explaining the symptoms and how slow the positive results of IVIG can be) and he expressed this:
“I feel like a 100 lb dumbell is weighing down my heart, making it beat super hard. When you show me proof of articles that I’m not the only one feeling this and this is definitely normal stuff for PANDAS, I feel like you cut the string holding that weight to my heart and I’m free again. “
I took him to one of his favorite restaurants and upon entering, I instantly picked up on his nervousness. He was overwhelmed by all the people around and his fear that they might be sick and make him sick. It broke my heart, but not as much as the words of his that followed:
“If PANDAS gave me strength instead of scary thoughts, I’d be the strongest man in the world.”
Then during our lunch conversation he said to me:
“I hope this never happens to me again, but if it does, no one could convince me that it’s going to get better and go away better than myself. So this time, when I’m all healed, I’m going to record a video of myself saying “Hudson–I know it’s hard to believe right now. But you will get better and these thoughts will go away. They don’t happen and you’re able to get back to normal kid stuff. You just have to be patient.”
I thought that was incredible insight, because even though he had made it through PANDAS completely twice before, when he is in the midst of a flare it is hard for him to remember that. In fact, during this third flare, he often asked to see pictures of himself having fun/being healthy after one of his previous flares because he was having a hard time recalling happy times post-PANDAS. Heart breaking.
Finding this note to the tooth fairy was just one more of those thousands of gut-wrenching moments when you wish you could just absorb their angst.
It’s incredible how articulate these kids can be about their symptoms/feelings/experience of being behind the bars of PANDAS.