A driving fever

Danette Goulet

NEWPORT BEACH -- At 5 years old, Austin Russell can spell complicated

words faster than most adults.

He knows all the planets and their moons and has nearly mastered the

periodic table of elements.

He can multiply five-digit numbers in his head and was counting by

threes at age 2, when his contemporaries couldn’t count by one.

With Austin, logic prevails.

So when, on one of his many visits to Children’s Hospital of Orange

County, the precocious tyke found the hospital’s stock of videos and

books sorely lacking, he did not merely whine to his mother.

Not Austin. He asked his mother, “Why don’t we see about getting

people to donate more stuff?”

“When I was at the hospital, they never had good videos,” Austin said.

“So I came up with this idea to make other children at the hospital

happy.”

And so his video and toy drive began.

A MYSTERIOUS ILLNESS

Austin’s unfortunate familiarity with the hospital’s video collection

began three years ago.

One day, out of the blue, the then-2-year-old began to a run fever

that spiked up to a life-threatening 106 degrees and lasted for several

days.

It was every parent’s worst nightmare and one that Michael and Shannon

Russell would begin to go through every eight to 10 weeks like clockwork.

No one could tell the Russells what was wrong with Austin. He would

show no other signs of illness, Shannon Russell said, just quietly begin

to run a fever that would inevitably climb to 104, 105 or 106 degrees.

“It’s very frightening,” she said. “It’s lethal at that point.”

The family went to neurologists, hematologists, rheumatologists and

immunologists, but no one could tell them the cause of Austin’s illness.

Batteries of tests were run, including CT scans and MRI tests.

Doctors also began to look at Austin’s unusual developmental quirks.

He never had any interest in stories, fairy tales or fantasy and would

never pretend as most children do, his mother said.

Rather, Austin has always had an insatiable need for cold, hard facts.

He thinks scientifically and mathematically.

Yet despite his seemingly keen intellect, Austin has extremely poor

motor skills. He struggles to dress himself and, as a kindergartner at

Andersen Elementary School in Newport Beach, is in adaptive physical

education.

Doctors briefly considered that he may have a form of autism, but

later set that theory aside as it didn’t really fit, Shannon Russell

said.

Finally, Austin ended up under the care of Dr. Antonio Arrieta, a rare

and infectious disease specialist at Children’s Hospital.

Austin is one of about 25 cases Arrieta said he has taken on in which

his young patients have periodic or persistent fevers.

He treats the children for “periodic fever aphthous lesions

pharyngeitis adenitis,” or PFAPA.

Although Austin does not suffer from lesions in his mouth as do most

patients with the disease, Arrieta said he otherwise fits the patient

profile.”There aren’t a whole lot of kids yet with PFAPA,” he said. “They

do tend to be very focused kids, very high energy, but I don’t have

enough data out there yet.”

If Austin does have the disease, Arrieta said the good news is that it

tends to disappear between the ages of 9 and 12.

GOOD FROM THE BAD

Austin’s illness has taught him compassion for others beyond his

years.

Though he and his parents are increasingly trying to combat his

episodes at home, Austin said he wanted to make things better for other

young patients at Children’s Hospital.

“It was easy; we just went to my brother’s school,” he said of his

plans for a donation drive.

Austin’s 3-year-old brother Grant attends the preschool at Newport

Coast Child Development Center. Austin said he remembered similar drives

when he attended the school.

Within a day, collection boxes were overflowing with between 300 and

400 videos, books and CD-ROM games.

The bounty has been spread out to recreation rooms on three floors at

the hospital.

“It’s absolutely wonderful and for him to initiate this on his own --

kids helping kids, how can you wrong?” said Patricia Dooley, the

hospital’s director of volunteers, who doled out the items.

Austin hopes he never gets an opportunity to see the majority of the

videos he helped collect. This past week, his fever returned, but his

parents are taking care of him at home.