Molly Taub is intimately familiar with the landscape of her pain. It’s a vista she’s gazed upon far too long.
There is the muscle pain, deep and crampy in her arms and legs. There is the abdominal pain, so severe she can barely walk at times. There is the joint pain, sharp but intermittent. There are the migraines.
On a scale of zero to 10 — with zero being no pain and 10 being excruciating — Molly says, “A good day is about a 2. And then a bad day can be a 10. It really fluctuates a lot.”
Molly is a 15-year-old from Carroll County who has been treated at Children’s National Medical Center since the summer of 2012. The new Pain Medicine Care Complex at the Washington pediatric hospital seeks to understand and alleviate chronic pain of the sort Molly experiences.
Molly has a complex set of symptoms. She has frequent bouts of nausea. Her heart sometimes races. She experiences dumps of adrenaline similar to panic attacks. She’s often gripped by what she calls “brain fog” — an inability to remember from one moment to the next what she’s doing.
The broad umbrella diagnosis of Molly’s problem is dysautonomia, a rupture in her autonomic nervous system, the part of our body that automatically regulates everything from heart rate to digestion. Her more specific diagnosis is POTS: postural orthostatic tachycardia syndrome. It’s usually diagnosed by measuring changes in heart rate when the patient is tilted on a table.
Underlying everything is the pain, so severe it has kept Molly from school for the past year. Before her POTS diagnosis, Molly was seen by doctor after doctor who suggested her problems were all in her head.
That’s a common experience for many of the patients at the Children’s National pain clinic. For them, MRIs, CT scans, X-rays and blood tests have revealed no physical cause.
But pain can work in mysterious ways. Simply enduring an extended period of chronic pain — from a broken limb, from surgery, from a virus or infection — can alter the body’s wiring. When the trauma has healed, the pain remains.
And physical pain affects a patient’s mental state.
“There’s a high anxiety component to having chronic pain,” said Liz Bettini, a pediatric clinical nurse specialist at Children’s National. “A lot of our treatment options, like psychological counseling and biofeedback, are meant to treat the anxiety that occurs when having pain, the fear that you’re not able to do things.”
When exercise hurts, you don’t want to exercise. But sometimes exercise is exactly what’s needed. Molly visits Children’s National for physical therapy. She receives saline infusions to combat painful dehydration. She takes medications to combat pain, but she must be careful they don’t interfere with the drugs she takes to treat her POTS symptoms.
Molly has also spent time in a special chamber, a futuristic-looking pod bed that wraps patients in womb-like solitude.
“I don’t really understand why it helps, but it does,” Molly said. “I think it’s just relaxing. I don’t get a lot of relaxing moments.”
These are all parts of the clinic’s multi-pronged approach. “There is not a single-pill answer to date for complex and ongoing pain,” said Sarah Rebstock, the physician who directs the pain medicine clinic.
Molly endures it all with an admirable stoicism. “Everybody has to go through struggles,” she said. “It’s part of life. My struggle was at a very early age.”
But sometimes you must be despairing, I said.
“ ‘Determined,’ I would say,” Molly’s mother, Lisa Taub, said. “Despair doesn’t get you anywhere. Our goal is to get her to live her dreams, whatever they end up being, and not be stuck in this. We’re determined to get her there. She’s as determined to get there.”
“I’m very determined,” Molly said.
I’m determined, too: determined to raise $400,000 for Children’s National by Jan. 10. The money that you and other Washington Post readers donate will go to the hospital’s uncompensated care fund, which is used to pay the medical bills of underinsured families. So far, we’ve raised $6,693.
We’re getting a leg up from Bill and Joanne Conway, who have generously offered to match all gifts to The Washington Post Campaign for Children’s National. All donations, up to a total of $150,000, made by Dec. 31, will be matched dollar for dollar.
To make your donation, visit www.ChildrensNational.org/WashingtonPost or send a check (payable to “Children’s National”) to Washington Post Giving Campaign, c/o Children’s Hospital Foundation, 801 Roeder Rd., Suite 650, Silver Spring, MD 20910. Our deadline is Jan. 10.
Your gift today can make a difference in the life of a child.
For previous columns, visit washingtonpost.com/johnkelly.