Long way from help
A child’s journey through sickness toward health
It was May 14 and Parker couldn’t walk.
The four-year-old had spent two days complaining about leg pain to his mother, Laura Case, but because Parker told her he had slipped on a ladder at the playground, she figured he’d just pulled a muscle.
But leg pain wasn’t Parker’s only symptom: He couldn’t urinate and complained about headaches. Laura, a licensed practical nurse, took him to Now Care in Southgate Mall because it was Sunday and she thought he had a simple urinary tract infection. If it hadn’t been a weekend, Parker would have gone to his primary care provider, as per the rules of the PASSPORT Medicaid that covers Laura and Parker. Parker’s urine was clean and Now Care sent him home with the recommendation to see a doctor on Monday if he was still ill.
They wouldn’t have to wait that long.
That night Laura says Parker woke up screaming. He couldn’t walk. The pain was too much for the child to handle.
“He was asking to be carried everywhere…it was scary,” Laura says.
She took him to the Community Medical Center emergency room where, Laura says, doctors were confused by Parker’s condition. What did any of those symptoms have to do with not being able to walk?
After several days, Parker’s illness was diagnosed as transverse myelitis (TM), an autoimmune disorder associated with multiple sclerosis. The illness causes inflammation of the spinal cord that leads to nerve damage, and affects about 1,400 people in the United States each year. The majority of those cases strike people between the ages of 10 and 19, or 30 and 39.
An MRI performed at the hospital showed a dark spot on Parker’s spine, above his tailbone––the infection. He was given a lumbar puncture, put on intravenous steroids and given a catheter. It was a lot of trauma for a four-year-old to go through, and it was no cakewalk for his mom either.
“It was just hard to sit there and not be able to do anything to make it better,” the 26-year-old single mother says.
After a few days on the pediatric floor at Community, Parker showed some improvement, at least in attitude, and asked to get out of bed to walk.
“Of course, he got like one step and fell down,” Laura says.
During the next week, Parker used a walker to get around while the steroids pushed him toward recovery. After a week he was walking without assistance. He was discharged May 24 with only his continuing urinary problems to contend with.
But all was not well.
Parker’s headaches came back. Then his legs began to wobble and his mother says he falls frequently, and continues vomiting for no apparent reason. All are symptoms associated with the infection. Laura was told Parker had recovered.
A second MRI ordered by a urologist showed the infection in Parker’s spine remained, as big as ever. Since then, local doctors, according to Laura, have been apprehensive about treating Parker further, urging her to seek the care of a pediatric neurologist.
Problem: There is only one pediatric neurologist in Montana, Dr. Donald White of Helena, and his waiting list is a month long.
The next closest pediatric neurologist is in Spokane, Wash., which does Parker no good, because Montana Medicaid typically covers out-of-state care only within 100 miles of the Montana border.
According to the National Institute of Neurological Disorders and Stroke, TM cannot be cured, but if the associated infection isn’t cleared up within three to six months, permanent nerve damage may ensue.
So for the last two months Laura has been researching TM, trying to find someone familiar with the disorder who would be willing to treat her son.
“It’s not infrequent that friends and family members have to educate themselves about [TM] because doctors are not informed about the disease themselves,” says Sanford Siegel, President of the Washington-based Transverse Myelitis Association.
One name Laura continued to come across as she searched was Dr. Douglas Kerr, a neurology professor and director of the Transverse Myelitis Center at Johns Hopkins in Baltimore, Md., the leading authority on the disease.
“The problem with Johns Hopkins is that they don’t take out-of-state Medicaid…There’s no way around that bureaucracy,” says Siegel, who has recently begun advocating for Parker.
According to Laura, Montana Medicaid did propose a solution, though its practicality is debatable.
“They suggested to me, ‘Could you move to Baltimore and apply for Medicaid there?’” Laura says.
Meanwhile, her son’s spinal infection was going untreated. That’s when hope arrived.
After the Independent sought comment from Siegel, he contacted Laura and, drawing on his experience traversing medical bureaucracies, did from his home in Ohio what no one in Montana had been able to do.
Siegel put Laura in contact with Seattle Children’s Hospital, which accepts Montana Medicaid, and has a pediatric neurologist on staff.
“He even put me in touch with a woman who offered to let me stay with her while Parker gets treated,” Laura says.
While Parker’s appointment is pending, it appears he’s at the end of his journey through Montana’s healthcare system. And all it took was three months and a guy in Ohio.