My oldest daughter is a high school senior, attends school events, cheers her younger sister at volleyball games, works hard on her homework, spends time on Facebook, loves "Modern Family," deals reasonably well with the normal stress she has in her life given the school workload, college essays, social commitments and so on. In other words, Sarah is a typical teenaged girl.
That wasn't always true.
In the middle of 10th grade, when she was 15, she started to complain about being tired. "I'm exhausted," she would tell me. I put it down to too much schoolwork, not enough sleep and typical teenage angst. I made sure she went to bed early, took a multivitamin and ate better... but the exhaustion persisted.
During the Christmas vacation we went to spend some time with my mother, who lives in Virginia. It was Christmas Eve, and I was preparing our holiday dinner. My younger daughter burst into the kitchen screaming, "Sarah's not breathing!" My husband and I ran to the bedroom to find Sarah sprawled on the floor, face and lips white. It looked as though all blood had drained from her face. Her eyes were slightly open but she wasn't seeing or hearing. While my husband tended to Sarah, I called for an ambulance.
At the hospital, they checked everything and reported that her blood pressure was low, while her pulse was high. Not knowing what else it could be, the ER doctors thought perhaps she might be dehydrated and proceeded to give her an IV. Hours later, as Christmas morning was breaking, I took Sarah back to my mother's house, completely unnerved. We reviewed every possibility: Something she ate? Not enough sleep? Stressed about something? Coming down with a virus? Nothing really seemed to fit or make sense.
A few days later back in New York City, I took Sarah to her pediatrician, who examined her and said, "It was probably just one of those teenage things. Maybe a little too much stress, not enough sleep. Nothing to worry about."
Shortly after the Christmas holiday, I woke her for school, but Sarah couldn't get up. I tried to persuade and cajole, remembering what one doctor told me years ago: "Don't let them stay home if there are no broken bones, no blood and no fever." But she just looked at me and said, "I can't." I called the pediatrician.
When Sarah tried to get up a little while later to go with me to the doctor, she fainted on the floor.
From that day in early January until early April, Sarah's life became a blur of visits to cardiologists, infectious disease specialists, rheumatologists and neurologists coupled with bouts of fainting spells that occurred often and without warning. She was tested for celiac disease, the flu, rheumatoid arthritis, lupus, heart disease, mononucleosis, bacterial infections, viral infections and brain tumors. She went to school with wires connected to her head, to her heart, and even had a spinal tap. I can't tell you how many times she was asked, much to her discomfort, "Could you be pregnant?"
While Sarah's school was incredibly supportive during this time, the fact was she often missed classes, or left early because she felt so sick. While she was in school, she found it hard to concentrate, and her grades suffered. She had no energy for friends or school activities. I worried constantly that on top of everything else she was going through physically -- whatever that was -- she was at risk for depression. Sarah confided that she was starting to feel as though she would never feel well again.
Eventually, her pediatrician suggested that perhaps Sarah was suffering from anxiety and depression, and that it might be time to visit a psychiatrist. "After all", she told me, "we have not been able to find any physical reason for Sarah's problems, so they must be psychological." I started searching for a new pediatrician.
I put a call into a doctor I was hoping could shed light on this: Dr. Karen Hendricks-Munoz, head of the Neonatal Intensive Care Unit (NICU) at New York University Langone Medical Center, where Sarah had been born and stayed for almost three months. Sarah was a preemie, born at 27 weeks and weighing 2 lbs., 2 oz. Thinking this might be connected somehow to Sarah's prematurity, I explained everything to Dr. Hendricks-Munoz. She immediately knew whom I had to take Sarah to see: Dr. Julian Stewart, who was doing extensive research on POTS (postural orthostatic tachycardia syndrome) in adolescents, and Dr. Hendricks-Munoz believed Sarah's symptoms closely matched those associated with POTS.
According to the National Institute of Neurological Disorders and Stroke, POTS is defined as:
A condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of is lightheadedness or fainting accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age.
Sarah was seen by Dr. Stewart within a few days, and after he gave her the "tilt table test" (the gold standard test for a diagnosis) it was clear she had POTS.
In a recent New York Times article, which focuses on a teenaged boy who had the same experience as Sarah, Dr. Stewart said,
"These people can't remain upright," said Dr. Julian M. Stewart, who studies the disorder at Westchester Medical Center and New York Medical College. "They can experience a 20 percent to 30 percent drop in cerebral blood flow when they try to stand up. This causes cognitive difficulties; they can't think well on their feet."
POTS has a strong genetic component (although there is no history of it in our family) but can also be triggered by illnesses such as mono, the flu or even a bad cold. There is no cure for POTS, but, fortunately, most adolescents eventually outgrow it.
After she was diagnosed, Dr. Stewart put her on a program that included a medication that constricts the blood vessels and helps push the flow of blood toward the brain, exercise, extra fluids and salt, and more sleep. He also gave Sarah a gift: the knowledge that POTS is a temporary condition -- not a disease -- and one that is manageable while it is a part of your life.
When I conveyed this story to my friends and family, not a single person knew what POTS was, or had ever heard of it. When I tried doing research on it after Sarah was diagnosed by Dr. Stewart, there was a dearth of information, and that hasn't changed.
I worry that there are teens who are being misdiagnosed due to a complete lack of knowledge about this easy-to-diagnose condition, and are sent to school psychiatrists to deal with "depression."
The first and most critical step will be to make sure that parents and every junior and high school administration know about POTS, and understand that it can mirror some of the most common aspects of anxiety, phobias and depression. Worse, it can rob teens of months, sometimes years, of their lives.
Please help share the information, by sharing this article.
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2011 New York City Marathon Weekly Training Countdown (3 weeks to go!)
I'm running in the NYC Marathon in November to celebrate my 55th birthday and raise money for the Pancreatic Cancer Action Network.
Here's an update on my training schedule for this week:
Monday:5 miles using a run/walk ratio of 3 minutes/30 seconds
Wednesday: 6 miles using a run/walk ratio of 3 minutes/30 seconds
Friday: 8 miles using a run/walk ratio of 2 minutes/30 seconds (last week my last "long run" was 29 miles. I'm glad that's over.)