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Youngster almost felled by rare disease

Roy Bod now on the recovery road
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Roy Bod holds up the autographed Estevan Bruin jersey that was sent his way by friends in the Estevan-Torquay area.


He should be out of danger now and on a solid road to recovery, but 10-year-old Roy Bod has been on a bit of a roller-coaster ride for the past month as far as his health is concerned.

The health misadventure began Jan. 7 for the Torquay area youth. He was scheduled to play goal in a minor hockey league game that day but came down with what were believed to be flu-like symptoms, said his mother Brenda.

"He missed his games that weekend and a couple of days of school the following week," she said. The following weekend he played some hockey but complained of being tired and run down, by Jan. 16, he arrived home covered in a heavy red spotted rash.

A visit to the emergency ward at St. Joseph's Hospital led to a diagnosis of the flu with the rash being explained as a way the virus was working through his body.

But what was really happening, it seems, was the manifestation of what is known as the Kawasaki disease accompanied by scarlet fever and pneumonia.

By the following Wednesday, young Roy was back in the emergency ward suffering from severe vomiting and diarrhea plus a fever that spiked as high as 105. This time he was sent home again, with the advice that the virus had to work its way through his system.

On Friday, a bath failed to cut the fever and aggravated the rash which had spread to his lips, mouth and eyes by Saturday morning.

Since he had not eaten and was lethargic and dehydrated, another visit to the ER was in order and this time a request was made to have the youngster transported to Regina for a more detailed diagnosis. It was rejected. It was still being diagnosed as the flu by an attending physician.

But with the encouragement of a St. Joe's nurse and a mother's gut feeling, an ambulance was eventually arranged on Sunday and Roy was admitted to the pediatric ward at the Pasqua Hospital where he was examined by Drs. Islam and Talukdar as well as a contagious disease specialist. Tests were ordered including two echocardiograms, chest X-rays, ultrasound and several blood tests and an internal examination.

This time the diagnosis was much different. Pneumonia in the left lung, strep throat and scarlet fever plus the emergence of most of the symptoms of the generally hard-to-diagnose Kawasaki disease.

"If not caught and treated quickly, it can be fatal or can also lead to lifelong complications," said Brenda.

How Kawasaki disease is contracted cannot be determined, but it is known to affect the mucus membrances, lymph nodes, blood vessels and heart, causing inflammation of the blood vessels and arteries including the coronary arteries which, in turn, leads to aneurysms and heart attacks, even in young victims.

Roy showed most of the symptoms including peeling skin, swollen hands and feet, and all the other signs that were evident earlier on.

"He had all these signs, yet this was still being treated as a bad flu case!" Brenda said, noting there are no specific tests used to diagnose Kawasaki disease; it is done through the check-list of symptoms.

"It is not contagious, but a person can be a carrier and not know it, because it won't affect them," she said.

Immediate treatment was arranged in an effort to prevent coronary and artery damages. That consists of IV gamma globulin in high dosage accompanied by pain relievers which usually lead to an improvement in the condition within a couple of days. But due to the advanced nature of Roy's situation, the recovery has taken about two weeks. As of Feb. 3, the youngster remained in the Regina hospital but it was expected he could be released within the next day or two, and will need to return a few more times for follow-up checks.

"Even when it's treated quickly, up to a quarter of the children with Kawasaki may still develop problems in their coronary arteries. There are no known measures to prevent it," said Brenda.

Once he leaves hospital, Roy is instructed not to return to school directly or to play hockey for a couple more weeks. His return to more normal activity will be dictated by his blood tests and immune system.

He is cautioned to avoid contact with people who have the flu or colds and will wear an environmental mask when he leaves his home. His mother figures the follow-up appointments to Regina will be numerous since everyone wants to ensure that he stays well once the recovery process begins in earnest. Those follow-up sessions will include another echocardiogram and another one every year for several years to screen for heart problems.

"As a parent and advised by another parent (the nurse and she knows who she is), we go with gut feeling when your child is ill and you can't be satisfied with the diagnosis. That's what happened in the visit to Estevan. I suggest you go to where you see someone who knows and who specializes in pediatrics. If it hadn't been for that nurse in Estevan and the pediatric nurses and specialists at the Pasqua, my son could have had a very bad outcome," Brenda said.

Right now, the family is waiting for the green light to take Roy home which would allow everyone to return to some sense of a normal routine.

"Three weeks in hospital, away from home, school, daily work, hockey and family is too long," she said.

"How he got this strange illness will remain a mystery, but I thank God for the nurses and doctors who took care of him."

Roy's return is eagerly awaited by his sisters Jasmine and Hope and family friends. The Bods also expressed their heartfelt thanks to those who have donated to the trust fund that was set up to help the single parent family meet some of the expenses associated with this misadventure, including the $1,400 invoice for the ambulance service and the numerous other travel and medical costs that will follow that won't be covered by the regular medicare plan.

Roy was also pleased to receive an autographed Estevan Bruin jersey arranged for by Tyler and Cale Adams.

"You don't get a lot of big smiles from Roy, he's usually a pretty serious kid and with all this happening, it was good to see a smile cross his face when he saw that jersey," said his uncle Lavern.

Donations to the Roy Bod trust fund may be made at the Torquay Credit Union or at Spectra Credit Union in Estevan.