Limes for Dessert
I have always been able to quickly assess if a clinician is worth my time at one of my son's appointments by: 1. how genuine they are and 2. how thorough they are. Genuine is something you either are or are not. But thorough is a little different. All doctors start out thorough. A medical student who is anything but thorough will soon be
eaten alive by their superiors. But so many doctors lose this important trait as their training goes on.
I was being thorough when I ordered my own son's work up for PANS (Pediatric Acute onset Neuropsychiatric Syndrome). PANS is a condition where an infection triggers a range of neurologic and psychiatric symptoms in children through a mechanism we don't completely understand. At the most basic level we know their immune systems seem to be attacking their brains and causing inflammation.
I first began to suspect my son Max might have PANS a year and a half ago, soon after graduating from residency. Max was 10 at the time. I called an alleged PANS specialist in my area and was told Max didn't have it after a five minute phone conversation between myself and the good doctor. (Note: this is not what I would consider a thorough assessment. You shouldn't either). I was intimidated, still a young doctor fresh from residency, and I decided maybe I was just reading too much into things.
I began training in integrative pediatrics the following spring and began learning more and more about PANS. I grew increasingly convinced it was what my son had. But, the thing is, he was doing better. I told myself maybe I was wrong and he really was getting better with his anxiety medicine and consistent parenting and fresh air and all that. But this past January he flared. You see, PANS is what they call a relapsing/remitting illness. That means our kids can seem to be pretty much fine for a while and then something triggers the disease and BAM, it all comes back. January was our BAM.
Let me explain what BAM looks like for Max. It all goes back to the summer of 2009. Max was 3 1/2. He was a laid back, chubby, sweet little guy. Big chubby cheeks. Big chubby thighs. Sorry to go on, but, oooooh the chub. Max was very chill. Happy and relaxed. Always laughing and exploring and amazing us. He slept well. He ate well. I have a picture of him the previous Christmas in Chinatown eating chicken feet at a dim sum restaurant with the caption "Max loves chicken feet!" He was 99th percentile for weight and height from the day he was born. Up until that summer. Up until the BAM.
He changed. He stopped eating. He just wasn't hungry any more. He developed insomnia, barely sleeping 4 hours a night. He became oppositional, having meltdowns where he threatened to kill us and himself, strangled himself, and hit, bit and kicked us. He developed severe separation anxiety and we had to pull him from pre-school. He began developing phobias and nervous tics.
Over the next couple of years he shrank before my eyes. He dropped from the 99th percentile to the 75th and then the 50th. His pediatrician said it was normal and I should just stop giving him so much milk, ruining his appetite. He went from 50th to 25th to 5th and then below. He wore the same clothing size from age 3 through age 9. I refused to admit he wasn't going to grow so I wouldn't buy him new underwear in that same damned size 4. Poor guy was still wearing those same Thomas the Tank underwear until he grew out of them in 4th grade.
He was eventually sent by his psychiatrist for evaluation at a feeding clinic and to endocrinology. Endocrine said, well we've never seen this kind of eating disorder in a child before. but his blood work looks fine so... buh bye. The feeding clinic insisted his problem was that he didn't eat a large enough variety of foods. I tried to explain that even the foods he liked he barely ate, that he simply wasn't hungry, but no one would listen. Meals had become a major battleground. Do you know what it's like to watch your child starve himself? To beg and bribe and yell and threaten to get him to eat a few more bites, to constantly try to find some creative new way to sneak more calories in without him figuring it out, to watch your baby waste away... These doctors clearly did not know what that was like. If they did, they would have tried harder.
He had no energy. He was always cold. He began developing massive amounts of cavities in his teeth very suddenly. He was attacking his brothers and us. His tics increased: blinking, throat clearing, shoulder shrugging, "beep"ing and "boop"ing, moving his arm up, raising his eyebrows. He became less oppositional over the next few years but more anxious: afraid to be alone, of the dark, of bugs, of seeds, of death, of someone breaking in our house, of someone being in his closet, of being late. He began developing compulsions and rituals. He became... unrecognizable.
I blamed myself as mothers do. To be fair, other people were blaming me too. It must have been that I didn't give him a secure attachment. That I talked about how much I wanted to lose weight in front of him too often. That I'd divorced his dad. That I'd spent so many hours away at medical school. That I devoted all my attention to his older brother with autism. That I was inconsistent and indulgent. Children need structure and consistency to feel secure. Shame. On. Me.
What I didn't know all those years was that little Lyme spirochetes were coursing through my baby's veins and arteries. Hurting him. Not me. The spirochetes, you see.
Now, getting back to the winter of 2017. The BAM of January 2017. It started with his teachers contacting me saying they were concerned. I went in for a meeting and we sat around a short round table in the library on short little chairs meant for grade schoolers. I worried about the well being of the homeroom teacher's knees in those short little chairs, bending our legs at unnatural angles. She'd had a knee replacement recently. Max had told me all about it.
The teachers told me Max was incredibly distracted. Not turning in assignments or turning them in half done. Just generally not himself. They couldn't quite articulate it but they were all worried. I began to tell them Max's list of diagnoses: Tourette's, anxiety, oppositional defiant disorder, Asperger's, ADD. They were shocked. Up until halfway through the year he'd seemed pretty much fine to them.
I talked to my husband and we both agreed he was back to having his tics and very anxious at home. His attention span had gone from distracted to unbelievable. Barely functioning. His phobias were returning.
I took him to his psychiatrist and he thought the anxiety was coming from the ADD. Max was frustrated with his declining school performance and it was making him anxious. The answer was to begin ADD medication. My gut said this was not the answer. So did my husband's. But I was desperate to help Max. Maybe this would work. Nothing else we'd tried had. I had to try *something*.
The ADD medicine only made things worse. His already increasing insomnia became more severe. So, his sleep medicine was increased. We'd been trying to wean him off it and now it was going up. The ADD medicine made him irritable and verbally aggressive. And it wasn't helping the ADD symptoms. The school agreed with us. We agreed to try another one and it was the same.
He began having meltdowns again. He hadn't had one in a year. He became afraid to go anywhere in the house alone. Became convinced again there were people in the closet out to get him. One night he came and slept on our bedroom floor because he was afraid. I needed to do something.
I thought back to PANS and decided it was worth a shot to re-evaluate him and run some blood work. PANS is immune mediated and we'd been noticing for years that Max seemed to have a weird immune system. On the one hand, he never seemed to get sick. He's never had a fever or a cold in his life. I'd been working as an urgent care doctor for the past year and a half at this point so everyone in our house was constantly sick (50 people coughing in your general direction everyday has an effect). Everyone was constantly sick except Max. The only thing he ever caught from us was stomach bugs. It always dumbfounded us because he eats less nutritiously than everyone else so why would he be the healthiest? On the other hand, he was prone to odd infections not typical for a kid. He'd had shingles at age 7, something typically only seen in older people and the immunocompromised. He was prone to frequent bouts of aphthous ulcers (canker sores) that lasted weeks at a time (something that people only tend to get when they are already sick with something else and their immune system is down).
I'd learned a proper PANS work up studying integrative pediatrics and now I found myself writing out the lab slip for my own son. I was trying to figure out what was triggering his flare and maybe also what had triggered the PANS in the first place 8 years ago. I suspected I would find a viral source. I'd learned to be thorough, though, and ordered the whole list of labs. It was so many, the lab made him break it up into two draws. He was *not* happy about this.
When the results came in, it was 9:30 at night. I'd just put the baby to bed. I came downstairs and was sitting on the couch. I pulled them up on my phone. I scrolled through noting various abnormalities and was talking very quickly about them in medicalese to my very confused husband. And then I came to the Lyme.
I hadn't seen it coming. I'd never found a tick on him and he'd certainly never had any of the Lyme symptoms I'd been trained to recognize. No bullseye rash. No fever, No stiff neck. No achy joints. Nothing. Nothing except .... everything. My sweet, chill, chubby bubby who'd become unrecognizable.
The lab work showed he'd had chicken pox and mycoplasma pneumonia but he'd never had a single symptom. But it's the Lyme that is still active. And it is what I believe must have triggered the PANS in the first place. Damn deer.
And so I am beginning to treat him and we hope for the best. At least we have an answer. At least I know I wasn't crazy, pointing out all the little things that didn't fit, to all those physicians and psychologists and therapists. At least I know it isn't a behavioral issue resulting from lax mothering. At least. We can devise a strategy now. We can fight now that we know what we're fighting. And we will.
The day I told Max he has Lyme we decided to make a lime dessert for after dinner that night. To show Lyme we weren't afraid. We laughed as we talked about it. Max laughed. My Max, not his PANS, not his Lyme. Max is sweet and passionate about his interests and a devoted big brother and he has grit. And I am his genuine and thorough doctor. We will fight and eat dessert along the way.