Tyler Johnson not diagnosed

Steamboat Springs boy, 10, may never know cause of infection

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How to help

Cheer cards can be sent to Tyler Johnson, 10, at no cost at www.thechildrensh.... Click on the gifts and greetings for patients link to customize a card and send it to Tyler. Donations to a fund to assist Tyler with medical bills related to his treatment and care can be dropped off at Vectra Bank, 2155 Resort Drive in Steamboat Springs.

Parents with questions about the disease or safeguarding their children can call the Northwest Colorado Visiting Nurse Association at 879-1632.

— Ten-year-old Tyler Johnson remains undiagnosed at The Children's Hospital in Denver, and medical staff told his mother it's possible he may never be diagnosed.

Earlier this week, doctors met to discuss Tyler's case and told his mother, Shara Johnson, they might not ever be able to determine what caused Tyler's symptoms, which most closely resemble a form of meningitis called meningococcal disease. The illness is a bacterial infection in the membranes surrounding the brain and spinal cord.

Dr. Paul Offit, chief of the Division of Infectious Diseases at The Children's Hospital in Philadelphia, said it's not unusual for suspected meningococcal disease cases such as Tyler's to go undiagnosed.

"There are two reasons," Offit said. "No test is perfect, and second, if the patient receives antibiotics before a blood culture," it can kill the bacteria before doctors are able to identify it.

Offit said that typically, the bacteria will show up in early tests and doctors will be able to diagnose within 48 to 72 hours. If the bacteria don't show up, medical staff might conclude that the patient has undiagnosed, or characteristic, meningococcal disease, but can't officially confirm the ailment.

Johnson said her son's case is especially puzzling, because Tyler did not receive antibiotics before having blood tests.

"Doctors still don't understand it," she said.

During a phone call from the hospital in Denver on Wednesday evening, Johnson said Tyler is making progress. In the background, the sound of children chatting could be heard as Tyler played pool from his wheelchair with another patient.

Doctors also told Johnson they won't have to amputate as much of Tyler's fingers as they originally thought. They plan to amputate from just below the first knuckle of all five fingers on his right hand, instead of removing his fingers entirely. Four inches of his feet from the toes back will be amputated, but with skin graphs, there are portions in that four-inch section that surgeons might be able to save.

The date has not been set for the surgery, but doctors plan to have another consultation Tuesday. Johnson said Tyler and his family might be able to return to Steamboat as early as next week unless doctors decide to proceed with the surgery and Tyler needs to stay at the hospital.

Tyler began vomiting in the early morning of June 23. The next day he had a temperature of 103.7 degrees and a rash on his feet that indicated a blood infection. He was airlifted from Yampa Valley Medical Center on June 24, to The Children's Hospital, after doctors were unable to determine the cause of his condition.

According to The National Meningitis Association, the disease is spread through "the exchange of respiratory droplets, which includes sharing a drink or utensils, kissing, coughing and sneezing." The disease can result in hearing loss, brain damage, limb amputation and death.

Johnson said The Children's Hospital has Fourth of July activities planned for the children today, including face painting and beanie baby bingo. Military personnel will stop by to do crafts with the children.

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