PKD Life - Winter 2020 - 20

CLOSER
MONITORING

I have ADPKD. My
brother, my father, my
grandmother, my greatgrandmother, and my
great-great-grandfather
had it. I'm 36, and I've
been having problems
for years now. I was off
from work for three
months because of
my kidneys.
For me, to test my
children was a nobrainer. When I was a
child, if myself or my
parents knew I had the
disease, we would probably have done things a
little differently with my
diet and sodium intake.
I pretty much had free
reign over what I drank
and ate. If it had a lot of
sodium, it didn't matter.

PKD LIFE * WINTER 2020

If I can prolong the
onset of symptoms
with my children until
later in life, that's
what I'm going to do.
My 10-year-old, Savannah, and my 6-yearold, Gabriel, have both
been tested, and they
have the disease. My
4-year-old daughter,
Esmé, has not been
tested, but we are setting things up to test
her soon. (I also have
a stepdaughter.)
My children don't
drink soda. It's mostly
water for them, and
juice on occasion. And
we strictly limit their
sodium intake. I feel
like if I have some
knowledge of their
progression, I can better assist them in the
walk through life.

EMOTIONAL CONCERNS

There can be profound emotional implications for
a child diagnosed with PKD. "A potential downside of testing is creating anxiety for a child, especially when there is little they can do to change
the course of the disease," Dr. Hartung says.
On the other hand, "there are situations where
the family is so worried that a child has it, that

LUCY BABER

We Said Yes to Testing

MIKE RONEY,
PHILADELPHIA

Although there are no
treatments for children
with PKD, parents might
want to know if they
should be on the lookout for risks. If parents
knew their child had
ADPKD, they might
check the child's blood
pressure more regularly
and be alert to kidney
stones, urinary tract
infections, and blood
in the urine. "These
things are red flags for
having ADPKD and are
also preventable or treatable conditions that you
can pay attention to, so as to have less complications overall," says Frederic Rahbari Oskoui, M.D.,
director of the Cystic Kidney Diseases Clinic at
Emory University.
It's a similar story when considering testing
children for ARPKD. "Because they are at risk for
their kidney function deteriorating, you could
monitor their kidney function and blood pressure
and have them evaluated for liver complications,"
Dr. Hartung says.
"There is an argument for establishing a diagnosis while a child is still in the household to help
establish healthy lifestyle choices," Full adds. That
could mean minimizing behaviors that could affect
the disease's progression, such as consuming too
much sodium, drinking carbonated beverages,
and becoming dehydrated.

PKD Life - Winter 2020

Table of Contents for the Digital Edition of PKD Life - Winter 2020