Matt in BC Children's Hospital

Matthew (13) was in the BC Children's Hospital on December 23rd receiving the 2nd of 2 IVIG treatments (intraveneous immunoglobulin).

On December 12th, Matt had a sore throat and a terrible fever. By December 14th he had unusual, uncontrollable twitching and was admitted to the pediatric ward at the MSA Hospital in Abbotsford. By the 21st, he was seeing a neurologist at the Children's Hospital since his uncontrolled movements were making it virtually impossible for Matt to do any of his everyday tasks (like drinking a cup of water or walking in a straight line). He has seen both a neurologist and a cardiologist who say that he has enough indicators that he likely has Rheumatic Fever. Matt was able to receive the IVIG treatment without being admitted to BC Children's Hospital.

What happened?!
Matt had strep throat. His body built up antibodies against the strep bacteria. Those antibodies began to attack Matt's basal ganglia (the part of the brain that controls movement). This is the cause behind his uncontrolled jerky movements (neck, arms, right leg, torso). This has been diagnosed as Sydenham's chorea.

Sydenham's chorea  (also known as St. Vitus' dance) one of the major indicators of Rheumatic Fever. This medieval sounding disease has virtually disappeared in North America since the use of antibiotics. There have been pockets of Rheumatic Fever outbreaks in urban centers in the US in the 1980's, but it is classified as a rare disease since fewer than 200,000 people have it (in the US). It is primarily a childhood disease (onset between 5-15 years old). The most recent diagnosis at BC Children's hospital was in Sept. 2005 , a first-nations child from a rural northern community. The last caucasian child diagnosed at BC Children's Hospital was in 1998, also from a rural community. It is not a contagious disease as it is Matt's body reacting to his own antibodies. The contagious part is the common streptococcal bacteria that caused the initial strep throat.

The doctors at Children's Hospital are saying that Matthew has enough of the indicators of Rheumatic Fever to treat him as if he has the disease. This is a post-steptococcal auto-immune disease that primarily damages the heart through inflammation. Matthew has no damage to his heart.

Sydenham's chorea is a non-permanent condition, even without treatment. It can be very debilitating however (and it can return), so we are thankful for the treatment. Without it, Matthew would likely lose months of school as he recovers. We have a new appreciation for blood donation - as it takes between 3,000 and 10,000 individual donors to provide one immunoglobulin exchange. Matt has had two treatments. We were very happy to pay the $10 parking fee at Children's Hospital when we consider that each of the treatments he received cost around $7000. These treatments have boosted Matt's immune system and reduced the twitching by more than 90%. (I gathered the donor numbers and cost from various websites, hoping that they are accurate).

Why Matt?
We have no answer. Some research suggests that the pockets of outbreak in the US are caused by new strains of strep bacteria, but there is no conclusive evidence of this.

Matt is in good spirits. There have been times when this has been overwhelming for him, particularly at the height of the jerky movements. Although these movements cannot be controlled on a "willful" level, they can be controlled on a higher level by preoccupying his brain. He does this with hours upon hours of PS2. He said that sometimes he's wished he could stay home from school just to play Nintendo (or PS2), but now he knows that it is SO boring when you do it for hours and hours and hours.

We will see his neurologist and cardiologist in January. Our expectation is that he will be on a daily dose of penicillin for the next 5-12 years to prevent a recurrence. We are hoping that he will feel well enough to go to school on January 8th.