PKD Life - Fall 2022 - 8

MARILYN NIEVES/GETTY IMAGES
THE KID ZONE
Ages & Stages
Navigating
Emergency
Care
Here's what parents need to
keep in mind about when
and why to go to the ER.
By Andrea King Collier
A manda Dill and her son Jaxon, who was diagnosed
with ARPKD when he was a year old, are no
strangers to emergency room visits.
" I took him one time because he had an unexplained
fever, " Dill says. " Another time, he had a procedure
on his liver, and when he got home, he started having
blood in his stool. " She took him to the emergency
room to make sure that he didn't have any internal
bleeding.
Now 11, " Jaxon is doing well with his kidneys, but we
are always paying close attention to his liver function, "
Dill says.
Because of potential ARPKD complications, many
parents like Dill find themselves having to decide
when to go to the emergency room or when to go to the
doctor's office. " Many times you have to go with your
instincts, " she says. But in some cases, the decision is
a numbers game. " If his temperature goes above a certain
number for 24 hours, we go to the ER, " Dill says.
" Parents like Amanda have learned over time how
to be strong advocates for their children and what they
need, " says Cynthia Pan, M.D., a pediatric nephrologist
and Jaxon's physician.
" As an example, fevers in children with either
ADPKD or ARPKD are pretty common, but not much
more than others, " Dr. Pan says. However, it's important
that parents not give their children ibuprofen to
break the fever because it may disrupt kidney function.
Urinary tract infections, dehydration, and (rarely)
8 PKD LIFE * FALL 2022
infections of the liver and
biliary tract (in ARPKD) are
other reasons that pediatric
PKD patients end up in
the ER. Dill says her son's
medical team gave her a
list of problems that might
prompt them to go to the
emergency room right
away, including a spike in
blood pressure.
" If possible, " Dr. Pan
says, " it's best to check in
with your child's specialist
or primary care provider
before heading to the
emergency room. They may
tell you to come into the
office, before going right to
the emergency room. "
If you do go to the
emergency room, keep in
mind that the team there
is usually only treating
the symptoms that are
causing concern. " They
are not PKD specialists, "
Dr. Pan cautions. Before
being discharged, they may
advise you to follow up with
your specialist soon after
your release.
*
" When we travel, I make sure we
know where the emergency rooms
are on the route. I also keep a hard
copy and a list on my phone of all
the medications Jaxon takes, in case
we do end up in the ER. "
- Amanda Dill
PKD Life - Fall 2022

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