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Limes for Dessert

May 2, 2017

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 tr