Early this year, a rare disease began to attack Christopher Armstrong’s lungs. It’s the sort of thing the 8-year-old Cedar Hill boy has learned to live with, since being diagnosed five years ago with the condition that first affected his eyes and moved on to compromise his nervous system and muscles.
“It’s called Chronic Inflammatory Demyelinating Polyneuropathy,” says Christy Lucas, spitting out a mouthful of words that shouldn’t come easy to someone who studied accounting rather than medicine. Still, the mother of two says she has had to learn many new things over the course of Christopher’s illness. “I never thought I would know as much as I do about medicine and hospitals, but Christopher’s CIDP has been a real educational adventure for all of us.”
Lucas says her son is one of only nine children in the country who have CIDP, a condition that is considered rare even in the relatively more common cases involving young adults. She keeps a list of all the other affected children, and keeps in touch with their families to monitor how the other children are doing.
CIDP affects the myelin sheath that covers the nerve, and results in slowing and abnormal conduction of impulses that affect movement, power and sensation in the limbs. In children it tends to produce a slowly progressive course and is always months to years in duration with some (but limited) responsiveness to steroids or immune modulating treatments.
“Christopher is a young man who faces many challenges,” says Dr. Thomas Geller, a neurologist who heads Christopher’s treatment team at SSM Cardinal Glennon Children’s Medical Center. “In spite of his condition, Christopher shows that he has true grit. He keeps a very positive mental attitude and a realistic perspective on what he can accomplish each day.
Christopher was born six weeks early, but he was otherwise perfectly healthy and normal. At age three and a half, however, his pupils became unequally dilated, with one pupil a tiny dot and the other wide open. Soon, Christopher lost depth perception and began losing the ability to focus in one eye. Lucas says she feared her young son was slowly losing his sight.
“He’s been through spinal taps and muscle biopsies, but the thing he hates worst of all is having his eyes dilated (for a medical examination). My father says that’s because he knows what it’s like to start going blind, so the dilation scares him,” Lucas says.
Christopher’s eye trouble ended as suddenly as it began, and his sight returned to perfect 20/20 vision. At age 4, the disease began to attack the young boy’s nervous system, requiring his family to help with simple tasks like dressing, going to the bathroom and getting into bed. He also has experienced weakness in the muscles of his arms and legs, requiring that he spend much of his time in a wheelchair.
“CIDP is like that; it changes its mind on where it wants to attack the body next,” Lucas explains. “It comes and goes; I’d say we’ve had about four and a half months of remission in the last five years.”
Most of the time, Lucas says, her son’s nerve condition is painful and radiates throughout his body.
During those times of remission, when everything with Christopher seems fine, Lucas says the family tries to maximize the time until the symptoms flare up again.
“We try to make sure that he gets to do everything a boy could want to do during those times. For instance, riding a bicycle is a great accomplishment for him,” she says. “We try to cram in lots of activities when he’s feeling well, so he’ll have the fun memories to carry him through the hard times.”
In the last several months, she says, CIDP has weakened the muscles around Christopher’s lungs, affecting his ability to take in a full breath. The progression of his illness has also affected the family financially, with insurance covering progressively less of the costs for medications and equipment Christopher needs.
The family’s congregation, Cedar Hill Lutheran Church, is holding a benefit this Saturday, April 28, from 6-11 p.m., at the High Ridge Elks Lodge. Tickets are $15 for adults, $10 for teens and $5 for children 12 years and younger. Proceeds will help the family with the overwhelming expense of Christopher’s illness. For more information, call the church at (636) 274-4802.
“One of the things that people always say about Christopher is that he seems so happy, and he really is,” Lucas says. “He’s young, but he’s been raised in the church and has always believed that God has a purpose for this. The thing he talks about more than anything is that he’d like to be a missionary. I’d love to see that dream come true for him, to see him share his story with other people.”
Dr. Bob Wilmott is Chief of Pediatrics at SSM Cardinal Glennon Children’s Medical Center and is a Professor of Pediatric Medicine at Saint Louis University School of Medicine. If you have a child health question for Dr. Wilmott, go to the “ Ask Dr. Bob” section of the Cardinal Glennon Web site at www.cardinalglennon.com.