Recently I had a few different people ask me how my kids are doing. Maybe I should just be polite and say "okay," but I'm not the type. Still, I felt guilty telling them the truth: that one of my kids was doing great and the other four are struggling. I felt like a gloomy storm cloud. And I thought, maybe if my kids aren't doing great people will doubt me as a doctor. But this is the nature of PANDAS. There are ups and downs. Days three steps forward followed by one with two steps back. We strive to make the steps forward outnumber those back with treatment and we have to remind ourselves of that.
Many kids whose PANDAS is caught early recover completely from the initial episode and have few flares with proper management. A lot of our kids don't: kids who were diagnosed later, have persistent Mycoplasma or tick borne illness, have comorbid conditions and, sometimes, kids where there's no clear answer as to why. They do improve, do recover, but it's a marathon rather than a 5K Walk Run.
Max was doing great after his most recent round of IVIG. We were getting him back. And then... Oh, the "and then"s. A seemingly mild cold virus went through our house and three of the four kids who have PANDAS flared (even the one without PANDAS seemed to be flaring. Helluva cold). The good news is Auggie, our 2 1/2 year old with recent onset didn't flare. I should be shouting that from the rooftops, but, we all know the "and then" is always lurking. Still, I think back to Max at that age and I'm grateful for a sign that maybe, just maybe, we can keep him from falling off the cliff. The battle with the Bear for Auggie is now tied at 1 to 1.
Back to the flares. Our five year old daughter Lena had responded beautifully to steroids. But once the steroids stopped, a lot of ground was lost (cruel Sirens). Not all of it, but a good bit. She's been on ibuprofen for almost a year so we decided to do the steroids and then try to stop the ibuprofen. And then the Helluva cold hit and Lena came crying, not wanting to tell me that she wet her bed. Her brain is inflamed again. Most of us with kids with PANDAS have that one symptom they get where we know that what we thought might not be a flare is definitely a flare. Lena's is bedwetting.
Max's tics had returned but only to a very minimal degree so I told myself maybe it wasn't a flare. But it was the medical marijuana scaling the tics back so much (shout out to medical marijuana for that). Generally Max's tics getting severe is his "tell." This time it came with a trip to the zoo. Eric and the little kids were going and invited Max. He didn't want to go, afraid to leave the house, afraid to leave me. But then he said, "I want to go but I can't. I just can't" and began to sob. He went back and forth for a while, paralyzed as to what he should do. In the end, he just couldn't make himself go. So I took him with me to the office where he talked about how much fun they must be having. I knew it was time for IVIG again. The brain fog, inattention, poor memory had returned. Luckily the medical marijuana was holding off the insomnia (woot woot MMJ). No meltdowns (Thank, You. God.) but food restriction returned. All in all, I would have killed for a flare like this a year ago. And that's the point. An upward sawtooth. All the treatments we've been doing are slowly making him well and a well body does a lot better than a sick, depleted one.
Mies's troubles were in quite a different direction. Soon after stopping Risperdal completely (after a 4 month taper) and starting medical marijuana, he'd had a decrease in his obsessive eating. His OCD had dropped dramatically so we assumed it was the medical marijuana causing it. Possibly the complete removal of the Risperdal, given it causes increased appetite. Unfortunately the appetite continued to decrease more and more and he began throwing up multiple times a day. Then he didn't want to eat or drink at all because he was afraid he'd throw up. If there's one thing that tears me up, it's watching one of my kids starve themselves. There isn't a more helpless feeling in the world.