with a grain of salt

Three years ago, I woke up in the night with excruciating heartburn and nausea. I suffered through those endless early morning hours until I knew my sister Leslie was awake. She's a family nurse practitioner, and we give the family in the term a whole new meaning. It's always helpful to know she's there to triage, even if she's often in cahoots with my doc, W.  At 7:00 am I finally call her. "Go to the ER now," she orders. I had health insurance then, so it WAS a possibility, but the ER? I spend far too much time in ERs as it is. Besides, she's my BABY sister and I don't have to listen to her. "I'll just wait until W's office is open," I reply. I lie back down, trying to breathe, and sure enough, five minutes later, the phone rings and it's W. Leslie may be my baby sister, but she has my physician's home phone number. "Call 911 and go to the ER," W says firmly. I argue. She offers to pay for the ambulance. Finally I agree, although I wasn't going to call an ambulance. The last time I called them for a neighbor, I ended up chasing them around the neighborhood because they got lost, which happens regularly since our numbering is so strange. That seems a silly thing to do in the dark while having chest pains. I do call my neighbor who is happy to take me to the ER on her way to work.

Here is a secret. If you ever want to be seen in the ER or physician's office quickly, work the words "chest pains" into your conversation. "I'm here because I sprained my wrist and seem to be having some chest pains . . . " "I have a sore throat, and did I mention the chest pains?" You don't even have to finish the sentence because things will happen quickly. No triage room for me; they slammed me in a wheelchair and had me back in a cubicle before they even got insurance information.

As the morning went on, the pain increased. My sister showed up and I put her in charge and abdicated all responsibility; they administered morphine, and I remember very little of the rest of the day, which consisted of chest x-rays, CAT scans, blood tests, and my being a smart ass to the endless parade of med students and residents asking the same questions over and over again, or at least so I'm told. They admitted me overnight and discharged me the next morning. Before I left, I was visited by the attending and a covey of med students. They told me it wasn't my heart and expressed bewilderment as to what it could have been. I told them I'd had less severe episodes of the same pain, but they shook their heads in puzzled unison and toddled on. 

The pain was bad enough that I didn't want to repeat it, so as soon as I got home, I turned to Google. It only took a minute to find my diagnosis: gall bladder. I fit the demographic perfectly and my symptoms matched as well. I called W and told her. "Well," she mused, "that's easy enough to find out. Let's get you in for an ultrasound." She did and my guess was correct. I was highly indignant that the cardiac docs at UNC were so focused on my heart that they had no clue what else those symptoms might mean. It was really a waste of time and money. Someone needs to tell them about Google, an invention that could revolutionize medicine. W referred me to a surgeon and we scheduled the operation for a few weeks out.

Elizabeth was, at that time, seeing an acupuncturist, who suggested strongly that I forgo the surgery. He  gave me an alternate treatment to try. It consisted of drinking shots of olive oil, chased by cold grapefruit juice. What the heck, I thought and planned it for the following Sunday. It was pretty disgusting, but I got it down. I had cleared it with Leslie, who is more open to alternative medicine than most traditional practitioners, but she ran into W at church and let her know where I was and what I was doing. I really felt that was not information W particularly needed, and I was right because she left church and charged over to my house to berate me for my stupidity and make me promise never to do that again. And I thought doctors no longer made house calls!

And I've not needed to repeat the olive oil procedure. Three years have gone by with no gall bladder pain. I've had numerous people tell me that this treatment can not possibly work, and even explain the science of why it can't work. But the truth is, it did. The ultrasound of my gall bladder that was taken at that time indicates that I should be in a great deal of pain. But I'm not.

And that is a long story to get me to the point I want to make. Over the years, Elizabeth has had probably ten different diagnoses: oppositional defiant disorder, intermittent explosive disorder, ADHD, anxiety disorder, as well as others. When she was two, we got her first diagnosis: oppositional defiant disorder. I went home and Googled it and spent the rest of the day in tears. When the psychologist found out, she offered to change it. "Huh?" I said. "It's just for insurance purposes," she said. "It's not like it's carved in stone."

That should have been my warning that psychiatric diagnosis and treatment are inexact sciences. But as the years went on, I listened hopefully to each new doc and took his or her new diagnosis to heart. Perhaps this doc would be the one to figure it out. Perhaps this person knew what he was doing. Perhaps this drug would be the one that did it. But things just kept getting worse.

Most of the things that worked, I've figured out on my own. I owe Leslie the credit for introducing me to the Feingold diet, in which I removed petroleum-based food dyes, artificial sweeteners and flavorings, along with high fructose corn syrup, from Elizabeth's diet. We saw an immediate difference. She does not do well with petroleum in her body. Most of her doctors rolled their eyes and talked about the fact that there was no science to back it up, although that's not entirely true. When she was hospitalized for the first time, I lost control of her diet. These very fragile children were being fed Froot Loops and Jello as well as brightly colored medications. There was and is very little recognition that the foods we eat may have an effect on our brains. There was no understanding that the systems of our body may be interlinked inextricably so that what we do to one part affects another.

January 2011 started a horrifying journey through the crisis mental health system. We entered it via Duke's ER after a hellish day of her attacking me. There a psychiatry resident told me I was misusing their facilities because I was unwilling to discipline my child. When I explained that this was an ongoing problem that was so much more than just behavioral, she rolled her eyes and stomped off to find her attending, who thankfully overrode her. From there we went to Butner, the state hospital for those with mental illness. The care there seemed good but she got worse instead of better. They discharged her to a PRTF (psychiatric residential treatment facility) in Winston, but they couldn't handle her and dumped her in Baptist Hospital's ER, where she remained for ten days because they didn't want her and no other hospital would take her. She deteriorated to the point that she was, at times, shackled to the guerney; they finally admitted her, where she stayed for a month until a bed at Butner came open. Another six weeks was spent there before being sent to a PRTF in Kinston. After fifteen minutes observation, their psychiatrist threw out the months of testing and observation, changing her diagnosis to psychotic and removing her from most of her meds because they didn't fit his diagnosis. Denying her medical diagnosis of diabetes, they decided she was underweight and packed 30 pounds on her, sending her blood sugar soaring. After she continued to deteriorate, they sent her home, saying she was too difficult for them.

And so, on February 16, I woke up with a child no one could handle and no one wanted. I looked through the stack of reports from the various places we had been. Very few of them agreed with another. And so I did what I should have done long before: I took what made sense and threw the rest out. Psychotic? Nope, psychosis doesn't occur just during times of frustration. Bipolar? I'm not buying that one either; only one doc diagnosed that and I have serious concerns about his competency. Anxiety? Yes, debilitating at times, but it doesn't look like most anxiety in kids. Expressive-receptive language disorder? I have said that for years and no one would believe me. Sensory issues? Hell yes. She still can't be trusted with liquid soap and she wears the tightest clothes she can find.

Put together, you have a child who is not comfortable in her own body and who loses the ability to communicate when she is anxious. Her language drops to about a two year old level. And what do two year olds do when they fall apart? They hit. They throw. Sorta like what Elizabeth does.

And so I made my own treatment plan. With her pediatrician's help, we got her into UNC endocrinology, where they put her back on meds for diabetes and thyroid disease. Our intensive inhome therapy team from Carolina Outreach helped with therapy, psych med management, and coordinating care. Both her pediatrician and her therapist recommended speech as well as occupational therapy. She sleeps with a compression vest, the tightest pants she can find, under a 15 pound weighted blanket. I brush her. Then I enrolled her at Just Right Academy, which provides structure, consistency and help for her academic deficits. And last, I took her to a holistic practitioner.

He strongly suspected gluten intolerance. Elizabeth has two autoimmune diseases, diabetes and hashimoti, a thyroid disease. Dr. Y explained that those often go along with gluten intolerance, and the inflammation in her body, shown by her blood tests her pediatrician ran, make that even more likely. And most interesting to me was the fact that there is also a correlation between anxiety and gluten intolerance. Further testing showed his hunch was correct, and that she was also intolerant to corn, dairy, and millet.

It was overwhelming and at one point I broke down sobbing in the bread aisle at Whole Foods. Who knew they had such a good pastoral care team? The employees surrounded me, giving me hugs, samples, and really good advice. My friend Lisa got me an awesome cookbook with recipes for truly elegant food. Another friend, Jan, practiced and perfected tasty cookies that we all love. And Claire rolled up her sleeves and got to baking. We learned about quinoa flour and xanthan gum, how to curdle coconut milk with lemon juice to make buttermilk for ranch dressing, and the advantages of cooking with coconut oil. The hardest part is finding food on the run.

The food issue has been brought to the forefront by two events. First, Elizabeth was admitted to the hospital for crisis stabilization. It took two days for this nationally known research hospital to come anywhere close to a gluten-free, corn-free, dairy-free, diabetic diet. The first night they sent macaroni and cheese and bread sticks. The nurse sent it back. Then they sent a hamburger on a bun. Finally someone gave me a pad of paper and asked me to write down what she COULD eat. I did: unbreaded, unsauced meat. Fish. Fruit. Vegetables. Brown rice. Quinoa. Salad. Eggs. Beans. Potatoes. They looked at it in surprise; "Wow. That's a pretty healthy diet." Yes, actually, now that you mention it. Yesterday's lunch consisted of black beans, rice, salsa, and salad. Finally!

The second slap upside the head was a meal, one held at my friend Meredith's farm. She provides us with organic vegetables and eggs throughout the year. Last night she hosted a Farm to Fork meal with fresh vegetables from the farm prepared by a Kenyan chef, Njathi Wa Kabui. It was a four course, four hour meal that was vegan and gluten-free. Africans and Americans made up the guest list. The blessing was given by a Muslim; my table included a Jewish couple. The food was so filling and because it was so good, no one overate. We ate on her big porch by the pond, listening to the ducks and the cicadas. I left feeling fed in more ways than one.

And isn't that what we all want? We grab fake food to eat while we are rushing from one place to another, forgetting that meals are more than nutrients, not that we're doing so well at getting those. The word companion comes from the root bread and the prefix with, but so many of our meals are eaten alone or in front of the TV. With a child on such a restricted diet, it's easy for eating to become a grim, purpose driven activity, and that is just wrong. I wonder if our skewed ideas about eating don't contribute to mental illness, especially depression and anxiety. Perhaps lovingly prepared meals using healthy appealing foods, eaten with people we care for could help move a lot of us towards wholeness. I don't want to say that mental illness is not a real thing, but I believe that among the therapies, meds, and techniques we try, care-full food needs to become another intervention.

It's worth a try. Today I smuggled Elizabeth a pocketful of Meredith's grape tomatoes; her eyes lit up and she ate them gleefully. At home, I take the okra from my CSA bag and prepare to roast them with olive oil and garlic. It's too important not to give it a shot.