Standing on the Precipice (or, Hoping for Chicken Feet for Dinner)
Before my son Max was diagnosed with PANDAS this past year, I had come to believe that this was my Max. This anxiety and OCD and restricted eating and insomnia and meltdowns. I did not realize he was in the belly of the Bear.
I had made myself forget who Max really was, the Max that was taken from us eight years ago. I told myself a story that surely he had always been this way. This was who he was, who he'd always been and always would be (an anxious PANDAS world without end, Amen).
He would learn strategies to deal with the anxiety and distraction and hyperactivity and sensory issues. We would try to find the right medication for his insomnia. We would somehow slowly expand his food choices with the various techniques the various books and therapists taught us (none of it had ever helped, but it would. It would have to. Somehow). We'd work with what we got and help him find happiness despite all of it.
We'd tried so many things and they never cured him. I'd come to accept we never would. But we'd make the best of it. Acceptance is important. It's healthy. So, I tried.
I tried to forget what Max had been. My husband didn't know him before the PANDAS. He and I had met a year into the overtaking of the Bear. His dad said he didn't know what I meant when I talked about how different Max had once been. Max had been in the belly of the Bear for so long, we'd all forgotten who he really was.
And then came the diagnosis. He fit the picture of how PANDAS kids are after onset, but the diagnosis requires a history of symptoms having come on rapidly. I began to question the story we'd all been telling ourselves for so long. When did Max become this way?
And so I went through pictures and called up memories. I remember naming him Max because I had a feeling he would be a content, happy guy and Max seemed like a name a content, happy guy would have. As he grew up, I remember saying over and over how right I'd been. He was my chubby little Buddha baby. Always smiling, so chill, so low maintenance. I remember sitting next to his crib while he drank his bottle and then getting up and leaving and not seeing him again until morning. I remember him eating hummus and sushi and drinking soy milk and sitting in Chinatown watching him eat chicken feet. Eating man sized portions. I remember how energetic and curious and full of life and happy he was. So damn happy.
The pictures show the change. He goes from a chubby 3 1/2 year old to a gaunt 4 1/2 year old to a cachectic 7 year old. But it's more than the weight loss. He looks sickly and pale. And he's not smiling in any of the pictures. He looks... lost. I know now it's not Max in those pictures. Not really. It is documentation of the Bear stealing him away bit by bit. Telling him lies, poisoning him.
But I know now that Max is in there, hiding deep inside. I have seen glimpses of him here and there for short bursts. But I never thought he'd come back. Not for more than a moment.
I have been treating Max's PANDAS for months and he is not improving. He had been in the worst flare I've seen in him since he was first taken. I've managed to calm it down and clear the strep infection, but his baseline is getting further and further from his former self. It is time for IVIG.
When I mentioned it to his dad, he wasn't happy. We're going to put an IV in him? And pump a blood product in? Isn't this a bit drastic? I pointed out we'd tried everything else and it wasn't working. He'd had it for so many years, it was solidly autoimmune at this point and unlikely to respond to anything else. His dad said, well what if we just don't treat it? I started to talk about what Max used to be like and how badly we need to fight for him. He said, I know you remember there being this big shift when he was 3 1/2 but I just don't remember it that way. And it's not that bad.
We decided to have a meeting. He and his wife and my husband and I all sat down around our dining room table. The big farm table my husband made for us when we first moved in 2 years ago. A time of so much hope, so much possibility.
I had just graduated residency and we were finally embarking on the life we'd dreamed of for so many years. All the sacrifices would be worth it now. My husband's son had been living with his mother during residency and my two boys had lived with their dad for the last two years. I was working 90 hour weeks and 36 hour shifts on a regular basis so it made sense for them to go live with their respective parents. Now, we were all living together again. They had a little sister now and a little brother on the way. We'd moved into a fixer upper we had so many plans for. I was starting life as an attending. We'd arrived.
As is often the case in life, things didn't go quite as planned. It's been a bumpy two years to say the least. Among other things, Max's anxiety and tics and ADHD and OCD and eating disorder all seemed to get worse soon after we all moved in together. The only improvement he'd made since the onset at 3 1/2 was in those two years he was living with his dad. Now, he was going downhill again. We wondered if it was because his dad was stricter. Maybe the adjustment to living together as one big family again was too much for him. Maybe a new neighborhood, a new school, a new household, was overwhelming him. But none of that fit with everything we knew about Max and his issues.
What we know now is that when Max moved in with us, he moved in with our germs. There were six of us now (and number seven came a couple months after moving in). I was now working urgent care which meant I was seeing a lot more acutely sick patients and in really large numbers. Forty or fifty people coughing in your face everyday has an effect. All winter long it was coughs and sore throats and fevers and fatigue at our house. Each illness made the rounds. Everyone ended up getting it. Everyone but Max. We marveled at his amazing immune system. No fever, no cough, no muscle aches or goopy nose. How could a kid who ate so little and seemed so stressed have such an amazing immune system?
We didn't know that he really was sick. But instead of fevers he was getting tics. Instead of a cough he was afraid there was someone in the closet out to get him. Instead of a goopy nose he'd lost all ability to pay attention for even a few seconds. His brain was inflamed. We just couldn't see it.
And so, here we sat, two years later. Our house largely unrecognizable now from its former run down state thanks to my husband's fervent, relentless remodeling. Our beautiful farm table now with a baby seat attached for our 20 month old and dings and dents from rambunctious boys.
I knew I needed to remind Max's dad of who Max had been so that he'd realize how bad Max had gotten. So, I gathered together pictures. From when he was a toddler up until now. I showed his dad his round face turning to hollow cheeks. His smile fading. His vibrant eyes glossing over. I pulled up the picture of Max in Chinatown. He started to remember.
My husband and his wife didn't meet Max until after the PANDAS and so my husband began to ask him questions about what Max had been like. His dad's eyes lit up as he talked about how great he was. Never had a single temper tantrum that his dad could remember. Happy and content. He began to remember.
We talked about the fact that he has missed the worst of the PANDAS because Max holds it together with his dad (and at school) and then comes home and falls apart. Unleashes it all. His dad listened and understood. And finally said, "I've only seen his meltdowns once. On a trip to Houston. And it was... bad. Really bad." And I could see in his eyes, he got it.
We talked about the science of it all and the consensus papers and the need for IVIG and he and his wife both agreed. We decided when we would do it and when we would tell Max. There were the practical issues. Who would take him for the blood work he needed before it. What should we do afterwards to keep him from getting sick (getting sick after getting IVIG can negate its effects). It was finally sinking in for all of us. Max is really sick.
We are grieving all our child and our family has been through, all the years lost, all the suffering. And yet at the same moment, we are confronting a hope we've never known. We might get him back. Something that seemed impossible a few months ago. To hell with acceptance. We are going to slay the Bear.
His IVIG infusion is in a few days. I know it will most likely help. I know it could help a lot. We could get him back. But I don't let myself think about it. I'm afraid to hope.
PANDAS is what they call a relapsing remitting illness. Every time your child gets sick, their symptoms become bad (a flare). But when the infection clears, they improve a lot. Early on, they might go back to their old selves between flares. As they get older, their baseline between flares moves further and further away. But there's still a difference.
When we didn't know Max had PANDAS, we would notice his symptoms getting worse (always in the fall or winter. Not that that fact occurred to us at the time. Hindsight) and we'd do what any parents would do: we'd try something to help him. A visit to the psychiatrist, a new kind of therapy, a new parenting approach. And eventually he'd improve (once the infection cleared) and we'd think it was whatever intervention we'd launched. There, we'd say, he's finally improving. He looks pretty good. We'll just keep this up and he'll get better. But it never lasted. So we learned not to hope.
Now here I am, standing on the precipice of something amazing, afraid to look. Afraid to see what might lie ahead for us. Afraid of the possibility, the hope.
I do not know what will happen. I think about Max emerging from this time in the Dark Woods and coming back to us. The last time I saw him, he was 3 1/2. The last time he saw himself, he was 3 1/2. I'm sure he doesn't remember who he was. I think about my husband meeting the real Max for the first time. I tell him stories of how Max was. It's hard for him to imagine. He'd see how amazing my Max is.
Max was in a musical recently. Beauty and the Beast. He played LeFue. He sang beautifully and his physical comedy was spot on. He did a lot with the role like I knew he would. I looked at him up on stage doing such an amazing job, and so happy. He's happiest when he performs. After shows, he's pure joy. I cried because he looked so happy up there. Not anxious or hyper or angry or sad. No tics. For once. I commented on this to my husband afterwards and he said, what are you talking about? He was mouthing everyone else's lines and when they all froze, he kept moving. I said, couldn't you have just let me keep thinking that? Just give me one moment of thinking he's free of this? Even if it's a lie.
My husband responded, yes he still had PANDAS up there, but isn't it amazing how well he does despite having it? I replied, the kid's got grit. And I thought to myself, if we can lift off this Bear that's he's carrying on his back, what else will he be able to do? All that energy he's using just to survive. If he can run that fast carrying a 200 pound bear, how fast will he be when it's lifted?
I am hoping that IVIG is the Ax of the Huntsman that will set Max free from the belly of the Bear. Life is not a fairy tale, but maybe, just maybe, we will get Max the happy ending he deserves. It's a scary thing to hope, but we're called to be brave for our children. Into the Dark Woods we go. To slay a Bear.