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.
Max and Lena both got another round of IVIG recently and seem to be improving. I switched Mies's LDN (low dose naltrexone, a medicine that benefits a lot of kids with PANDAS by regulating the immune system) from topical to pill form and that helped his gut quite a bit. He started eating again and now only vomits a few times a week. He'll see the GI specialist at Nationwide Children's Hospital this week for further work up. He started his summer therapeutic camp and it's going fine.
Cue Auggie's flare. This past Sunday we were at the beach on Erie's Presque Isle and the Bear pounced (told you 'bout that "And then," didn't I?). Auggie disappeared and another two year old was there in his place, in his body. Just like that. Meltdowns, contamination fears, hoarding, social withdrawal, no appetite, pupils the size of saucers...
He's on steroids and antibiotics now and doing better. Knock on wood the whole house is on the upswing. But it has left my husband and I a bit shell shocked. We feel like we're playing Whack A Mole (Whack A Bear?). One kid gets to doing better and it seems inevitably another one starts declining. It is easy to start feeling this way when you have a child (or children) with an autoimmune condition like PANDAS. Flares are unpredictable. The future unknown. But we cannot allow ourselves to become discouraged. We cannot give in to despair.
Auggie is only two and not able to articulate a lot of things. He has been anxious these past several days, especially at night. He seems to say "I scared" at the oddest of moments, out of the blue, and we will say to him "What are you sacred of, bubba?" His reply is always "Bears." I'm not sure where he picked up this answer. It very well could be from an especially rough episode of Masha and the Bear he watched over his sister's shoulder.
But I can't help but think that he is still innocent enough to have some insight into the battle that is raging unseen. That he knows there really is something there trying to steal him away, someone, a Bear. And he knows that we are there to protect him. He clings close to me. I tell him he will be okay.
Our garden is in bloom and last evening Auggie and I picked raspberries and carried them into the kitchen in my apron along with the basil and parsley and lettuce and kale for dinner. It felt so good to be picking berries like I used to, growing up in the country. The joy of spotting a ripe one and reaching in through the thorns to pick it. The feel of the berries warm from the sun being squished under your tongue. Seeing so much new life growing up out of ground that seemed to have nothing but dead weeds in it only a few months ago. We all had berries with our dinner, even Max. And there were no meltdowns at the table and everyone ate their food. We will be okay.