IN THE NEWS

My Story and My Mission

The birth of my understanding of Ca2+ ATPase began with another birth, one packed with the depth of love only a mother can know. Hours after my son, Knute, was born, I was breastfeeding him when the nurse came in. Knute had fallen asleep, as peaceful as an angel. But as the nurse adjusted the blankets, a look of concern crossed her face.

“He’s fallen asleep,” she said, as if I’d done something wrong.

“I know.” How could anything be sweeter, more perfect, than my newborn son’s sleeping face? His long, still eyelashes; his miniature fingers curled up in a tiny fist.

“He’s turning blue,” she said and lifted him from my arms. “He’s not breathing right.”

She whisked away my son, who was only hours old, into the ICU where I couldn’t follow. I was horrified, panic-stricken. Was he okay? Would he die? What were they doing to him? I lay trapped in bed, still recovering from childbirth.

They kept him in ICU for that first week. They ran scores of tests, but the only diagnosis they could come up with was sleep apnea. That explained why he stopped breathing while snuggled in my arms fast asleep. The solution was to wear an apnea monitor full time, every day, every minute. When it let loose its high-pitched beep, we had to check him and make sure he was still breathing. The risk was he would just stop breathing, and die.

In effect, Knute was never left alone for the first three years of his life. Someone–usually me–was with him at every second.

At the time, I was staying with my parents in Texas while my husband looked after things at our home in New York City. I hired an amazing caregiver who immediately bonded with Knute, becoming as emotionally invested in him as if he was her own. I don’t know what I would have done without her in those early months. Knute was with one of us every minute. When one of us slept, the other was with him. The two of us became fine-tuned to every subtle nuance of his breathing habits.

While we got the sleeping and monitoring under control, feeding Knute continued to be difficult. He did not swallow properly and aspirated his food, which led to a pneumonia diagnosis. His inflamed and narrowed airway gave way to stridor and a high-pitched wheeze.

At four months, doctors did a swallow test on Knute. He’d been slobbering a lot, and as a new mother, I didn’t know what to do. They tested to see if his milk was going down his esophagus or–more worrisome–his lungs. The news wasn’t good: I needed to thicken his milk with rice cereal so it would be solid enough for him to swallow without it slipping into his lungs. Add to this four nebulizer treatments a day, just to control the fine balance of eating and breathing.

To see my sweet baby boy endure all of these procedures at such a young age tore me up. He was infinitely vulnerable, and I was infinitely responsible for his care. I sat watching him, aware of every breath and heartbeat, prepared to do anything to keep him safe.

Thanks to what I  hoped were wise doctors, Knute stabilized over time. His apnea remained under control, although we designed our lives around his sleep schedule and the monitor, and he was eating well and growing on schedule.

Sort of.

He was always…droopy. It was hard to tell at that age, because babies are babies. But as he grew, he didn’t develop the core body strength he needed to hold himself upright in his stroller or in the jogger. Instead, he would just fold over. He couldn’t hold his little body straight. As a result, I carried him everywhere. At about six months, his eyelids drooped too, especially on one side of his face. The doctors told me it was ptosis (neuromuscular drooping of eyelids), and although they weren’t concerned, I was. After this, I noted little jaw spasms.

Knute hit his developmental milestones at the expected periods, so the doctors weren’t worried. They had already taken care of the potentially life-threatening issues of sleep apnea and swallowing. “Let’s just wait and see,” they told me. “All kids progress at different rates.”

But I was his mother, and I knew something wasn’t right.

So I watched him, carefully. I noticed how he reacted to what I fed him. When he was around 9 months, I started expanding his diet, feeding him fruit purée, yogurt, cheerios, and other typical starter foods. Unfortunately, I was not focused on providing organic, additive free food.

At this time, we were treating a flea problem with pesticide bombs. We also had the wooden floors refinished, which I didn’t realize gave off fumes. Our bathrooms were cleaned with bleach-based cleaners and, our house being older, there was not much ventilation.

Knute began to developed little nodules all over his body, like mosquito bites. I took pictures to show the doctors and other people in the medical community. One doctor suggested it could be mites, so we administered several mite treatments, which meant covering his body in a lotion that I later discovered contained toxic pesticides.

We tried allergy testing, and they all came up negative. He wasn’t allergic to anything, yet after eating certain foods he broke out in nodules. None of the doctors could diagnose what was happening. My sense of desperation deepened. And it wasn’t only the bumps that worried me; Knute’s mood changed as well. His asthma was triggered, his droopiness increased. I could not figure out what was going on.

The one thing I knew for sure was that his symptoms were triggered by what he ate. So I began to document everything he ate and his reactions every food.

Given his persistent eyelid ptosis and overall lack of core strength, he was tested for myasthenia gravis (a rare but long-term neuromuscular disease). Negative.

Taking On the Task Myself

 

At this point, Knute was a year and a half old, and he’d had symptoms his entire life. Yet the medical community, for all their hard work and good intentions, had come up with no solid determination for what was wrong. Yes, we’d taken care of the most severe symptoms, but nothing was diagnosed, and certainly nothing had been cured.

All of this was so tangible for me; Knute was right there, and I knew how he was reacting to certain foods. So I began to do my own research. I knew it wasn’t myasthenia, but I also knew the symptoms were similar. I started researching rarer, congenital versions of myasthenia. The doctors I worked with didn’t even know these variations of the disease existed. His symptoms could have been signaling slow channel syndrome, caused by too much calcium getting in the cells. But nothing linked up completely with all of his symptoms. I researched myasthenia and understood it was related to muscle contraction. I understood that calcium was a key component in the contraction and relaxation of muscles, but what about all the other symptoms—asthma, hives, mood swings? With little help from the medical community, I had no solutions at hand. Nothing I could grasp onto for a cure or to even mitigate my son’s symptoms.

Our home in New York City is a one-bedroom apartment, twenty-six floors up, with a sprawling veranda. While there was no room inside the apartment for my ever-increasing stack of research papers and files, we did have a garden shed on the veranda. My husband and I cleared room in the shed for a desk, and I set up my office. In the winter it was freezing, and in the summer I sweated and swatted at flies, but I had a space to clear my head, organize my thoughts, and dig deeper into my son’s health mystery.

First, I set out to understand what was triggering his symptoms. Through Google searches, I found a group of concerned parents, both in the United States (the Feingold Association) and in Australia, who had made a connection between their children’s behavior and food additives, specifically food dyes and additives. Several of the symptoms referenced were the same as Knute’s, but I was still stumped over why. How was the asthma and hives and ptosis all connected? What was the underlying mechanism? Myasthenia and slow channel both pointed to calcium, so I thought, why not? It’s as good a place to start as any. The Australian group had been interested in BHA and BHT, two ubiquitous food additives. So I searched on PubMed and learned about the importance of calcium ATPase (Ca2+ ATPase) as a fundamental regulator of intracellular calcium. Most revealing, I began to identify the substances that inhibited the proper function of the enzyme.

My first real clue was that everything Knute reacted to was a Ca2+ATPase inhibitor.

Progress.

But if calcium were related to muscles, then how did the allergic reactions fit in? And mood changes weren’t muscular. I could see the pieces, but no matter which way I turned them, they wouldn’t click together.

Nothing clicked until I understood mast cells. These are a type of white blood cell, and reduced Ca2+ ATPase levels in these cells triggers mast cell degranulation, which then releases histamine and leukotrienes, the inflammatory factors that cause allergic reactions like welts and asthma. Another piece clicked together.

After this, I came to understand that intracellular calcium levels in neuron cells determine the release of neurotransmitters. Neurotransmitters are the chemicals in the brain such as dopamine, serotonin, and acetylcholine that affect a wide range of processes including food intake and behavior.  This could explain my observations regarding Knute’s mood changes.

Despite their diversity, every one of Knute’s symptoms linked back to the level of intracellular calcium. Maybe I wasn’t insane after all.

Now, I just needed to cut back on everything that inhibited the enzyme Ca2+ATPase (which we go into in great detail in the next chapter). All kinds of foods and food ingredients inhibited Ca2+ATPase: natural, seemingly healthy foods (such as organic cookies made with aluminum-based baking powder); a plethora of food additives; dyes, pesticides, off gasses. I couldn’t test his levels of Ca2+ATPase, but I could assess them based on his symptoms. When I cut out exposure to the inhibitors, he got better. It was as simple, and complex, as that.

By this point, everyone thought I was nuts again, because I was so adamant about what Knute could and couldn’t eat. My well-meaning sister would give him colored popsicles when she gave them to her children. My parents could not resist stopping at McDonalds for chicken nuggets (which unsurprisingly contain tons of chemical additives) or a sausage biscuit (the worst of anything on the menu). It took time for them to understand the connection between food bumps, asthma, and most disturbingly, his mood.  Finally they got it.

It was quite a job packing simple foods for our annual trip to the beach on a small island without organic food. I would take a cooler of clean foods which I could cook for him. It was not easy; a little boy wants to eat hotdogs, ice cream treats, and cotton candy just like everyone else.  School lunches provided another challenge.  Knute was the only child in school who was allowed to bring his own lunch. What I learned over time was that from time to time he could splurge on an “off” food.  These special instances took some pressure off, which helped.

By this point, I believed that Knute’s body had a tough time with calcium regulation, so any outside factor that inhibited his already weakened facility resulted in symptoms. I hadn’t found a cure; I was just able to manage his quality of life. To a certain extent this also included doing those things that increased his Ca2+ATPase, but primarily I learned that I needed to avoid the inhibitors. My sweet son, by the age of five, was conversant in intracellular calcium regulation!

Although I had gained an understanding and awareness of Knute’s condition, the medical community, for the most part, just stared back glassy-eyed when I told attending doctors and other health professionals about my discoveries. So I gave up on sharing my findings. Instead, I kept learning. The papers in my garden shed piled higher as I realized that intracellular calcium regulation was a primary factor in heart disease, obesity, pre-natal and early childhood development, and even in the rate of recovery after athletic exertion.

Today, Knute is a healthy, thriving teenager. His health problems are largely behind him, and he enthusiastically pursues his academic passions through specialized science research programs and as an avid member of his school’s robotics team. Now that he is a teenager he has come to self-modulate his food choices.  He has learned from his experience to avoid his “off foods” especially during periods such as exams where he diligently sticks to a completely clean diet. He cannot afford to be off. It affects his mood, his performance, and his skin.

Knute will never be an athlete, but his early childhood experiences have left him with a depth of empathy that continues to astound me. He knows things go wrong in life, that not everyone is born with the same set of skills, and that you certainly can’t blame someone for not trying hard enough if their physiology simply doesn’t allow for certain outcomes, whether it be a position on the school football team or in the chess club. He’s able to see other people with a clarity and compassion I can only hope to achieve for myself, and this entire journey–and the help I ultimately hope to provide other people–is solely because of him.

As I continued my research, it was astounding to me how many chronic diseases were associated with low Ca2+ATPase levels, and over the course of the last fifteen years more and more connections have been made. It was amazing to me that I had never heard of it before, but also that no one I knew had ever heard of it, including the doctors I spoke to. So I felt an obligation to get this information out, especially to mothers with young children. I also saw a need for people concerned about age-related diseases, as well as health-conscious people of all ages.

My only goal in writing this book is to provide you with information so that you can make informed choices, for yourself and your family.  The information I am presenting is not hocus-pocus. All the information and theories I present are backed by scientific journal articles from dedicated researchers. I have done my best not to sound hysterical, yet I retain my right to feel passionate about this topic, especially while children’s healths are at stake.

Thank you for taking the time to learn something new. I believe you will be glad you did.