Cough it Up, Spit it Out!
Summer 2014
Pediatric Pulmonology Center CF Updates
Volume X, Issue 5
A Division of Children’s Hospital of Greenville Health System (864) 454-5530
Special Interest
Articles:
We are saying Farewell to Dr. Jane Gwinn
• School forms
and flu
vaccines.
• Kick-off for the
Cure 9/20/14 at
6 pm!
• New Recipe for
snacking.
Individual
Highlights:
School forms
2
Georgia’s ride
3
Research Updates
4
Equipped for Life 5
Angels with Roses
6
Dr. Jane Gwinn has
been a pediatric
pulmonologist for the
last 23 years and she
has practiced in
Greenville for 21 years.
She was the very first
pediatric pulmonologist
to practice in the state
of South Carolina. She
developed a CF Center
through Children’s
Respiratory Center and
Greenville Memorial
Hospital as an affiliate
to Duke University
Medical Center in 1995
and
boy has it grown!
f
i
rDr. Gwinn has always
shad a passion for the
t
care
of children with
,
Cystic
Fibrosis. She has
d
spent years trying to
e
teducate families,
e
patients, healthcare
r
personnel
and our
m
icommunity about Cystic
n
Fibrosis.
e
t
h
e
a
u
d
i
e
Our CF Center has
nothing but gratitude
for all the time and
nurturing she gave to
promote a successful
treatment regimen and
great quality of life for
our patients.
Dr. Gwinn does have a
few words for all of our
families, “I have
enjoyed taking care of
children and young
adults with cystic
fibrosis for more than
30 years of my career.
Twelve of those years
were in the US Army so
I moved frequently. I
missed seeing my
patients grow up since I
was never in the same
location for more than
3 years. Since returning
to Greenville in 1993, I
have been able to take
care of patients from
infancy to adulthood
and I have loved seeing
your smiling faces. I will
miss all of you, but I
expect to hear great
things from your CF
team.
Keep taking care of
yourselves and stand up
to CF. You are the
winners.”
Cough it Up, Spit it Out!
Page 2 of 6
Do you have your school forms filled out & signed?
“Gain a rapport with the
teachers and the nurse
and this helps with
success for your
student.”
Most of our Upstate
schools resumed classes
in August. School is an
exciting place to meet
people and learn lots of
information, but there are
requirements too.
should have everything
with the nurse. Our
middle and high school
students may have their
inhalers on their person if
they wish, but enzymes
still with the nurse.
School nurses are
required BY LAW to have
forms filled out and signed
by healthcare providers
for all medications that are
to be administered, even if
the administration is done
by the student.
REMEMBER, enzymes
CANNOT be in pockets or
they will NOT work! They
must be kept in a cool
place.
Medications need to be in
their original container
with the dosing
information written on the
box/bottle. Our
elementary schoolers
We also recommend that
our patients have liberal
access to bathrooming
notes, as well as the
ability to carry a water
bottle and snack if
needed.
Some students requiring
frequent hospitalizations
should discuss intermittent
homebound forms with the
guidance counselor and if
indicated bring them or fax
them to our office
(864)241-9246.
We want school to be a
positive experience.
Good handwashing and
infection control practices
help to achieve this goal.
We also want you to
remember that our kids
NEED yearly flu vaccines.
Our patients should NOT
receive the intranasal flu
preparation (Flu Mist).
Get psyched everybody
for another successful
school year!
.
Recipe Corner: TV/Football Mix
Ingredients:
ingredients.
½ cup peanut butter
4) Bake at 200 degrees to
225 degrees for 2 hours.
1/3 cup salad oil
1 tsp celery salt
5) Makes approximately 8
servings.
2 cans mixed nuts
2 cups Rice Chex
2 cups Wheat Chex
2 cups Cheerios
4 cups pretzels
Nutrition Information:
Serving Size: 1 ½ cups
Calories per serving: 565
Protein: 21 grams
Fat: 42 grams
Directions:
1) Mix together peanut
butter, oil and salt.
2) Melt
3) Mix with the rest of
Carbohydrate: 32 grams
This is a great snack
option especially for our
kids who are struggling
with their weight. You
could certainly add
chocolate drizzle or
caramel drizzle or even
some cheese. Those of
us not needing high
calories should probably
steer clear of this, as it
looks like something that
has a potential for portion
size overload!
Page 3 of 6
Cough it Up, Spit it Out!
Georgia’s Wild Ride!
Georgia Caroline Kay is a
busy cowgirl. She
competes in horse shows
several weekends each
month. Her favorite event
is barrel racing. This year
she qualified for the NBHA
Youth World Barrel Racing
Championships. She and
her family spent the week
of July 19th at the Georgia
Agricultural Center in
Perry, GA. There were
approximately 2000 youth
and teens competing from
around the United States
and as far away as Italy,
France, Hungary, Australia
and other countries.
Georgia Caroline and her
horse Dixie had two great
runs. Although they did
not make the finals, they
all thought it was a great
experience and Georgia
Caroline says "I'm ready to
go back next year!"
We are so PROUD of
Georgia and Dixie, way to
go girl!!!
CF Accreditation isYour
a Vital
Piece to our Success
headline is an
The CF Foundation is very
particular about who they
accredit to care for your
children. There are
multiple factors involved in
this yearly process. You
may have been on the
CFF website and looked
at other centers and their
“numbers.” These specific
numbers are part of what
we as caretakers are
‘graded-on.’ The better
our numbers, the better
our patients are doing and
the more likely we will
continue to be accredited.
You are all probably
asking yourselves, “Why
is Lisa going on and on
about this?” The reason
is that over the last year
we have had a
significantly difficult time
getting some of our
important part of the
patients seen 4 times
newsletter and should be
during the year. We have
considered carefully.
had difficulty getting the
labs and throat cultures
done that the CF
Foundation requires, as
the orders were given and
never completed. We
need your help!
We realize as parents the
stress on you and your
family is worsened when
we ask for these yearly
labs. We realize that the
4 visits is a timeconsuming venture. Our
goals as caretakers in our
CF Center are to be sure
your children are thriving
and that any symptoms
are addressed early and
aggressively.
We are asking you to
please keep your
appointments. Please see
the dietician at least once
a year or more if directed.
Follow thru and obtain the
lab work. We know from
the CF Registry that those
children who grow well
have much better lung
function. We know that
children who are regularly
screened have much
better long-term
outcomes. The CF
Foundation sets up the
guidelines after reviewing
years of research. They
KNOW that if we see your
child more often, they will
typically do better.
Please help us as we
continue to work to meet
the goals the CF
Foundation has set up for
us, so we can continue to
take care of you and your
families.
Some newsletters include
a column that is updated
every issue, for instance,
an advice column, a book
review, a letter from the
president, or an editorial.
“Please
keep your
appointments and
get your labs done.”
Cough it Up, Spit it Out!
Page 4 of 6
Kick-off for the Cure at the ONE center Greenville!
We are excited to
announce that the
Children’s Hospital is
helping to sponsor this
year’s Kickoff event!
This is primarily an adult
event on September 20
and will feature the
Clemson Tigers versus
the Florida State
Seminoles. Tickets are
$55 ($35 is tax
deductible!) and includes
beer, wine, food &
entertainment by
Greenville’s favorite
establishments! Doors
open at 6 pm!
This is the ultimate
tailgate experience and
the proceeds benefit the
CF Foundation. There will
also be a silent auction for
some amazing packages!
To buy tickets:
http://sc.cff.org/greenvillek
ickoff
If you need more
information, you can
contact: Ginny Conrad at
the CF Foundation at
vconrad@cff.org or by
dialing: 866-324-2242.
Research Updates
Curx & Gilead team-up A
new antibiotic combination
is in development
Fosfomycin: Tobramycin
for inhalation to treat lung
infections in CF. It is
treating gram +, grambacteria and is showing
promise against bacteria
like MRSA. It is in
preclinical trials, so we will
have to wait and see how
it progresses.
“Kalydeco continues to
show us more reasons
to raise money and be
excited about our drug
pipeline.”
Kalydeco approved for 8
more mutations!
Vertex’s drug has been
approved for gene
mutations; G178R,
S549N, S549R, G551S,
G1244E, S1251N,
S1255P and G1349D.
This only encompasses
another 150 patients
NATIONWIDE, but it is
still exciting that progress
is being made! If you
want more info look at:
http://www.bizjournals.co
m/
CF Life Expectancy
Nebulized Voriconazole
Some new research has
noted that the median age
of death of people with CF
has improved more rapidly
that the general
population in US, England
and Wales. For more
information:
There is presently a case
study being reported that
discusses using nebulized
voriconazole to treat
severe pulmonary
infections from
Scedosporium
apiospermum. This is
groundbreaking and we
will see if this will become
broadly used. For more
information:
http://tinyurl.com/k9dufgl
Physical Fitness
improves Quality of Life
We know this is the case
for those of us without CF,
but it is affirmed for those
with CF too.
Aerobic exercise seemed
to provide the most benefit
from a quality of life
standpoint. So get off the
couch and put down the
gaming devices and GET
ACTIVE! For more
information:
http://www.tinyurl.com/mlb
3qre
Http://tinyurl.com/ke5ynuv
Kalydeco may have
other uses!
Kalydeco is structurally
similar to the quinolone
antibiotics, and there are
studies being done to
determine if Kalydeco can
also ‘act’ similarly to
antibiotics in the CF
patients. This will
definitely warrant more
research! For more
information:
http://tinyurl.com/m8ou99
m
Page 5 of 6
Cough it Up, Spit it Out!
Equipped for Life is here to serve YOU!
Equipped for Life is the
Greenville Health
System’s home health
company. The pediatric
arm of this company is
located on the first floor of
our building. It is run by
staff that devotes their
lives to the care of
children and their families.
Vicki Nelson, Katisha
Hardy and Yashika New
have over 45 years of
pediatric respiratory
therapy care between
them. These ladies are
the backbone of our
homecare division.
Equipped for Life carries
nebulizers, compressors,
gtube pumps, formula for
supplementation, and a
wide variety of other home
healthcare needs.
Equipped for Life is very
aware of the needs of our
Cystic Fibrosis population
and are here to support
our division and you.
If you have any
questions regarding your
equipment or need an
upgrade of nebulizer kits,
compressor or would like
to discuss changing your
present home health
provider, please let us
know at your next
appointment.
Respiratory Therapists of Equipped for Life
Vicki, Yashika and Katisha
Angels with Roses
Mason loves science!
appointments.”
with him more!
Mason is an 8 year old
from Roebuck and is in the
3rd grade. He lives with
mom, Tamika and sister,
Maddy. He really enjoys
professional wrestling and
is a big WWE fan. His
favorite school subject is
science. His favorite
vacations have been
Disney World and Myrtle
Beach. He doesn’t like
having to take so many
pills, but he does like that
he can eat ANYTHING!
Mom says, “Make sure to
take your medications
every day to keep from
being sick, make sure you
eat high calorie meals and
go to all doctor
Deuce and his Dogs!
The girl loves reptiles!
Deuce is a 12 year old in
the 7th grade. He lives
with mom and dad, Tonya
and Jackie, and 3 big labs,
Sassy, Chunk and Gator.
Deuce and his puppies do
everything together and I
always look forward to the
latest pictures he shows
me! He really likes math
and playing with his dogs.
He enjoyed a trip to Great
Wolf Lodge. He says that,
“I don’t like that I have so
much snot and that I miss
a lot of school” His advice
to everybody is, “Hang in
there, they will find a cure
for CF soon, just hang in
there!” I couldn’t agree
Krysta is a 12 year old in
7th grade. She lives with
mom, dad, sister “Nichole”,
cat “Salem”, a bearded
dragon “Rikki” and a ball
python “Albert.” Just let it
be known that Krysta’s a
better woman than me, a
snake and dragon ON
PURPOSE! She enjoys
being in band and surfing
YouTube. She says her
favorite vacation is, “flying
in [my] dreams!” She is not
particularly fond of having
CF and her advice is, “Do
your meds even though
they suck!” I would have
chosen a different word,
but I hear you, girl!
“
Division of Pediatric
Pulmonology
200 Patewood Dr., Ste. A 300
Greenville, SC 29615
PHONE:
(864) 454-5530
FAX:
(864241-9246
We’re on the Web!
See us under:
Children’s Hospital at:
www.ghs.org
A Sweet Country Girl!
Birthday Wishes!!!
Noah T.
7/10
Anslee is an 8 year old
who lives with mom and
dad, Kelly & Jeff, and
sisters, Chandler & Abbie,
dog, Cash & cat, Doc.
The family lives on a farm
and she always shares
cow stories with us when
she comes! She loves art
and playing with her dog
and sisters. She loved
meeting the Mermaids at
the beach and going to
Dollywood. She doesn’t
like going to the hospital,
but likes that she gets
prizes when she is there.
Anslee says, “Do your
vest and take your
medicine and listen to
what your doctor says!”
We would like to extend a
Happy Birthday to those
kids with July, August and
September birthdays!
JR L.
7/7
Jacob H.
8/31
Ivy T.
9/28
Krysta H.
9/7
Kyle C.
8/26
Deuce W.
9/21
Lauren S.
7/25
Garrison W.
7/11
Grayson Z.
9/27
Anslee P.
7/18
Miriam H.
7/10
Braydon A.
7/8
George W.
7/14
Alyson N.
7/26
Zariah P.
9/4
Ava W.
7/21
Jesus G.
9/13
Jason G.
8/7
Nykel K.
7/22
We’re also on FACEBOOK
So check us out and “like us”
www.facebook.com/GHSChildrens
About Our Organization…
Dr. Steve Snodgrass is
the Medical Director of the
Division of Pulmonology of
GHS’s Children’s Hospital
and is also now our CF
Center director. Our
vision is to transform
health care for the benefit
of the people and the
communities we serve.
Our mission is to heal
compassionately, teach
innovatively and improve
constantly. Our CF center
is affiliated with Duke
University Medical Center.
We are continually striving
to maintain the high level
Editor: Lisa A. DuBose, APRN, BC
Newsletter is made possible by a
grant from Forest Pharmaceuticals,
(formerly known as Aptalis).
HAPPY FALL!
of care we deliver to our
CF families. We have
multiple subspecialists
involved in our care
center. The Children’s
Hospital is here to support
our CF families to the best
of our abilities.