on questioning the "experts"

our experience with misdiagnosis & PANDAS

The intention of this story is for it to be read as a personal account of parents looking beyond the diagnosis of an entrenched medical establishment. It is not a roadmap for anyone else experiencing similar symptoms. There was a robust conversation had on Instagram earlier last week after I shared a small snippet of our experience with PANDAS with one of our daughters. The stories that flooded my inbox with others relating their heartbreaking experiences with me and asking me to expand on what I had shared is the impetus behind this essay. I hope that those who need to read it, find it.

I don’t know why I have had an abundance of interactions with medical authorities that wanted me to do something that just didn’t jive with me. It’s happened quite a few times, with my children and with me individually. What guided me to reject the directives of the experts? Gut feeling, I suppose. Intuition? The stubbornness of a girl that never believed that following the advice of an expert should come at the cost of my own inner voice and reason.

It’s in hindsight that all of our clues and hunches crystallize into a story that makes sense. But we don’t get that in the moment. In the moment, we get worry and angst and great uncertainty. And so it was with us, as parents, when at the age of eleven, one of our daughters started complaining about constant tummy aches. A few months earlier, she had been sick with both a strep and a MRSA skin infection that lingered. But that was gone and long forgotten about by the time the tummy aches appeared. It was only later that we realized that those illnesses were part of the puzzle of what was about to unfold. It was the tummy aches that grew into discomfort, and then outright aversion with eating that we had to do something about. 

We were already eating a traditional foods diet, free of grains, high in nutrient dense, properly prepared foods, so I didn’t think the GAPS protocol would benefit her much, but we started it anyway. After months of no improvement and a continuing worsening of symptoms, including the complete loss of appetite and weight loss, we decided our daughter needed something more than we could figure out on our own. My husband was in medical school at the time and was able to get our daughter in with a physician he was training with. This is the part of the story where I could regale you with all sorts of nonsense, but in the interest of brevity, I will simply tell you that it took a few visits and blood tests and more worrisome weight loss before the doctor believed there was anything wrong at all.

It was the cholesterol panel that took the physician by surprise. Did you know that when the body is starving, it jacks up its own production of cholesterol? Cholesterol, so integral to life that your body won’t let you be without. “Your daughter has the cholesterol levels that we would expect to see in a 75 year old obese man!” proclaimed the doctor who was in denial for weeks before. We were referred to the university medical centre’s eating disorder clinic.

We went to our intake at the eating disorder clinic, shell shocked, the lot of us. We looked around the waiting room at the beautiful skeletons sitting numbly around us. Many had come down from the ward in the hospital with feeding tubes dangling out of their noses. Our daughter sat beside us, gaze averted to her feet and whispered, “I don’t have an eating disorder!” She was horrified and riddled with guilt. We were horrified and riddled with guilt. Was it my insistence on healthy foods? Had I done this to her? It was as if someone had plucked us out of our lives and plunked us down into an alter-universe.

Tests and more tests and psychiatric evaluations and the squeezing of symptoms into models of dysfunction - that’s what they do. That’s what they did. Our daughter had no desire to be thin. She didn’t vomit her food back up. She didn’t binge. In other words, she didn’t fit neatly into one of the categories of eating disorders. She started off being labelled as “anorexic”, but that was later changed to “eating disorder otherwise not specified”. That would come to be the first time, but not the last, that a member of our family would have the “otherwise not specified” diagnosis. It’s the nice way of saying “we don’t know”. A label without a product.

That was it, we were formally initiated into the cult. Every week, twice a week, we performed the rituals of faith. A psychiatrist talked to our daughter to try to have her release her demons. After, the therapist would talk to us to try to figure out what evil we had planted. Later still, we would get their judgment: ‘she is not opening up. She is purposely withholding’. We brought family meals to the clinic and sat there, the five of us, eating and talking while we were watched and evaluated through the one way spy glass. A zoo family being observed. Physicians and therapists guided us. The weight scale, our judge and executioner. The hollowed out humans in the waiting room chairs next to us, our warning of the hell that lay before the non-conformists.

In that eating disorder clinic, “one of the best in the nation,” we were counselled, and the posters on the wall enforced, that calories were more important than “fixating” on nutrient density. They told us that vegetable fats were superior to the heart clogging animal fats. I mean, she did have outrageously high cholesterol levels so we didn’t dare give her anything but the muffins with margarine and low-fat yogurt with granola they recommended, right? Never. But still, it haunts me that this is what we offer to those hungry brains, more emptiness.

Every day I went to our daughter’s school at lunch time and the two of us walked to the park. I would open her container of food and try and distract her as she force fed food into her mouth. She would often cry and shake and gag. Have you ever been so full it’s physically painful to eat? That’s how she felt. And there I was, her mother, insisting she keep going. I could not shake that there was more to her story. She was always such a soft, tender hearted young woman and the situation we found ourselves in left her feeling ashamed and confused. She couldn’t understand why she didn’t have an appetite, but we came to understand that all of the talk counselling and education did nothing to change any of it.

I had endless conversations with the doctors and the therapists, asking them repeatedly how it can be that we diagnose someone with a mental health issue and then expect them to turn themselves around with the same broken brain that got them into the mess in the first place. It’s perplexing. Even if the person is on some sort of medication to dull their symptoms, it’s doing nothing to deal with how their brains started sending them rogue messages. I became focused on that thought and the more I was given shrugs in reply, the more frustrated I became. Was it biochemical? And if so, how can we expect someone to override their biochemistry with logic? The physicians at the eating disorder clinic did not ask those questions. Their environment asked them to suspend such thought and simply get on with enforcing “the model” to manage and treat the “disease”.

Every week, the beautiful skeletons came into the waiting room. I came to recognize many. Some of them in their teens, some their twenties. Some so frail they were brought in on wheelchairs. Some who looked exhausted from the effort of opening their jaws to speak. My husband and I would often crawl into bed at night, wrap ourselves around each other and weep. “This can’t be her life. This cannot be her life.” Was it to be her life? The experts told us so. She could manage it, but she would always have the brain with the bad idea.

Months rolled on and I continued my search for alternate answers. I read everything I could get my hands on. I ensured that the foods that were stuffed into our daughter were the most nutrient dense foods available. I consulted with naturopaths and homeopaths and herbalists and acupuncturists. The therapist at the clinic fired our daughter because she was making “insignificant progress”. No matter how hard the therapist tried, our daughter insisted she wanted to eat and, no, she didn’t want to be skinny. We used to walk home from our daughter’s appointments with her crying because she couldn’t understand what they wanted her to say. “It’s like if I don’t lie, they get mad at me”. My mama Leo heart burned.

More oracles to consult. More experts, only it was the “alternative experts”. We were really struggling financially at that time. I still remember calling into a famous alternative doctor’s office and explaining our daughter’s story and asking if Dr. Wonderful would have the experience to help because our funds were very tight and even starting up with this doctor was very costly. They assured me he could. Thirty minutes into our first telephone appointment, he told me I should continue on with our daughter in the hands of the clinic and that he didn’t have more to offer. I was gutted. He was THE GUY! I later wrote to his office, asking for a partial refund. They refused.

That was it. We had no more money and, eight months into our nightmare, our daughter had gained a few pounds, but everything else was stagnant. The feelings of hopelessness and utter despair had long been with us. It was like that. I think it is commonly like that for most - despair and then a rally, despair and then rally again. That’s how it is for me, anyway. What choice is there when you see your child struggling? There were no answers in that clinic, that was evident in the long haulers who were the ghostly permanent fixtures in the waiting room chairs beside us.

I read voraciously and in that reading I somehow came upon a subject I knew nothing about, “PANDAS” (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). I became a woman obsessed. If there was a study or a video or an article on PANDAS, I was reading it. At our next appointment with the clinical physician, I excitedly brought in my package of literature, sure I would shock her with my findings. Instead, she was quite nonchalant about the whole thing. Yes, she knew about PANDAS. It was still debatable, in her opinion. She seemed almost bored with our conversation.

I was flabbergasted. Okay, perhaps it wasn’t THE answer, but shouldn’t it be investigated, especially in circumstances like that of our daughter who was in the “otherwise not specified category”? She unenthusiastically agreed to test our daughter for strep, one of the possible markers of PANDAS. I wouldn’t have left that office if she didn’t. We never got a call with the test results, I had to ask the receptionist weeks later if the blood tests were returned. I was later handed a photocopy of the lab results. Our daughter, who was not sick and hadn’t recently been, had 300 times the highest acceptable antistreptococcal antibodies levels circulating in her blood. 

It was in the preceding months of the great reveal of this blood test that I had also started researching all I could on cholesterol in the body. The physician at the clinic suggested putting our starving daughter’s brain on statins. A twelve year old on statins because her body was going wild with overzealous cholesterol production and it must be stopped! And to stop the starvation, we must complete the starvation to the brain. Wild. That was never going to happen.

There was, and is, an incredible man with an incredible intellect that knows more on lipid metabolism than almost anyone on this planet. I reached out to that man in desperation and something in him, I like to think it the whisper of the Divine, had him reply to me. He isn’t a doctor, he doesn’t see patients, and I was a nobody across the world. But, still, he replied to me and I shared our story. “Your daughter’s body needs massive amounts of saturated fats to save her” he said. 

We had been eating our fatty meats and raw, whole milk, and eggs, and animal fats for years. How much more fat could I give her? However much fat you can, said he. There is no room for ego when your child’s life is on the line. To lower her cholesterol, to feed her brain, we had to go on a search and rescue mission for the hunger cue that was AWOL.

Herbs for the strep. Medicinal levels of fat for her brain. And when I say “medicinal” levels of fat, let me give you an example of just one of the shakes she drank every day: one cup whole raw milk, one cup whole raw cream, 2-3 tablespoons coconut oil, 6 raw turkey or duck egg yolks, ground vanilla, and a tablespoon of raw honey. Repeat. Repeat. Repeat. Meals were cooked in fat and then had tablespoons more added. It was a gamble the experts at the clinic would have never approved of.

After a few weeks, and I shall never forget this, our daughter told us we didn’t have to go to her school to make sure she ate anymore. “I’m hungry at lunch now”. Supper, too, she began to eat with relish. The pink returned to her soft little cheeks. The sparkle in her eye, too. She began to laugh again, converse again. She ate whatever and whenever. Her spine disappeared below a level of flesh. We could barely believe our eyes.

A month or two later, at our discharge meeting at the eating disorder clinic, I started talking to the doctor about what we did that so dramatically reversed our daughter’s cholesterol back into perfectly healthy levels (no statin had ever been started). She wasn’t interested, certain that it happened on its own and what we did, actually increasing fat, could not possibly have been why. We talked about PANDAS and the things I learned. In under a year, we were leaving the eating disorder clinic with a young woman that was healed. They were completely disinterested in learning anything from her or us on how that happened. In truth, they were more hostile than interested.

Our daughter is in her twenties now. She continues to eat the nourishing foods she was raised on. She is healthy and beautiful and a woman I admire and respect. She maintains her weight effortlessly and without concern. She has better things to do.

Author’s note: 

I first brought up our experience with PANDAS on Instagram and I was absolutely inundated with heartbreaking messages from all sorts of people who have their own tragic tales to share about how PANDAS affected them and their families. One of my readers, Jeannie, wrote me about her son, Jake. He, like us all, had a layered story. His mother tells of how PANDAS played a role with him as well. You can read her whole story here. It’s an incredibly honest and poignant story that I hope many see and share.

As I started out saying at the beginning of this essay, this is a story not meant to hand you the smoking gun of every health struggle under the sun. I hope, instead, that it’s used as a bit of a beacon for anyone struggling against “the system” with little more than a hunch that the answers they’ve been given aren’t the right ones. Your work is yours alone and the gifts that come with it, yours to harvest. You’ll miss that if you don’t pay attention. Don’t let me or anyone else be your authority. Collect all you can on your journey and refuse anyone who demands your complete submission to their blinding brilliance.