nikki cover story health and dreams
TRANSCRIPT
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F A L L
2 0 0 9 I S S U E
T O R I E S O F I N S P I R A T I O N ,
O M P A S S I O N &
O R L D - C L A S S C A R E
NIKKIS STORY:
A SHOT OF COURAGE:
LIVING WITH TYPE 1 DIABETES
ENDOCRINOLOGY AT
PHOENIX CHILDRENS:
THE LONG AND THE SHORT OF IT
DOCTALK WITH DON WILSON, MD
PHOENIX RISES:
THE EXPANSION REACHES A
MILESTONE
THE LOFTIN FAMILY:
THREE GENERATIONS OF GIVING
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NIKKIS STORY
A SHOT OF COURAGE:
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SHOCKS H O C KThe waffle Nikki ate for breakfast had 18 carbohydrates in
it. The banana 25. The glass of milk 11. That totals 54, which
shell divide by her 12:1 carbohydrate ratio. That means shell
need 4.5 units of insulin. But Nikkis blood sugar was 180 when
she woke up. Since her target is 90, shell need to figure in the
correction factor, subtracting 90 from 180 and dividing by 100 an extra .9 units of insulin shell add to the 4.5.
Confused? This 10-year-old isnt. Its just another morning in
the day of the life of a child with type 1 diabetes. Nikki will
do it all over again in a few hours when she has her morning
snack at school.
Once upon a time in the Campbell household, finishing
breakfast didnt feel so much like an algebra exam. That all
changed on February 28, 2006 when Nikkis parents took
her to their pediatrician. Nikki had been excessively thirsty
and going to the bathroom more than usual; tell-tale signs
of type 1. It took the doctor less than seven seconds to prick
Nikkis finger, dab the blood on a small hand-held blood
sugar monitor, and see the number that would forever change
Nikkis life.
Her mom, Lee, admits that although she had heard of
diabetes, she didnt understand the magnitude of the
diagnosis. Before they drove to Phoenix Childrens Hospital,
where they would continue treatment, Lee drove Nikki back
to school to pick up her backpack. People at the school
were hugging us, saying how sorry they were asking if
there was anything they could do, says Lee. I started to
sense that this might be more serious than I thought. We
really had no idea what we were in for.
Type 1 diabetes typically strikes before the age of 18,
but some children are diagnosed before they even reachtheir first birthday. According to Phoenix Childrens
endocrinologist, Dr. Khalid Hasan, type 1, like all
autoimmune diseases, is on the rise for reasons that arent
completely understood. In fact, at Phoenix Childrens alone,
its not uncommon to have a newly-diagnosed type 1 patient
at the Hospital each day. The year Nikki was diagnosed
five other children at her elementary school already had the
disease a startling one in every 125 kids.
There are often misconceptions about the disease, which is
often confused with type 2 diabetes (see sidebar on page 13).
Type 1 occurs when the bodys own immune system destroys
the insulin-producing cells of the pancreas, leaving the
person insulin-dependent for life.
The brain must then take the place of the pancreas, withdiabetics meticulously monitoring everything they eat and
drink, counteracting carbohydrates with insulin injections
to allow the body to properly use carbohydrates for energy.
Exercise, stress, growth spurts, and illness also affect
blood sugar levels, making the disease a round-the-clock
balancing act. If blood sugars are too low, the child becomes
hypoglycemic, which can cause shakiness and weakness.
LIVING WITH TYPE 1 DIABETES
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Severe hypoglycemia causes confusion and seizures. But
persistent high blood sugars are even more worrisome as
theyre the major cause of long-term complications. The
disease can affect nearly every organ system, leading to
an increased risk of blindness, nerve damage, and heart,
thyroid, and liver disease.
Following onset of type 1 the disease can go undiagnosed
for weeks. The disease can look like other illnesses,
explains Hasan. During the winter, symptoms can mimic
illnesses that children get during flu season. In the summer,
many parents attribute the increased thirst to the summer
heat. By the time many children are diagnosed they have
so little insulin that the body experiences a dangerous
chemical imbalance that can lead to coma, or even death
if left untreated. About 30 percent of newly-diagnosed
patients at Phoenix Childrens are so sick theyre admittedto the Pediatric Intensive Care Unit.
Nikki was one of the lucky ones because she was
diagnosed so early. But she and her parents were feeling
anything but lucky that day. Nikki cried and held Mr. Moo,
a giant stuffed cow the staff had given her as they sat in
an exam room at Phoenix Childrens. Lee was in shock.
Stunned. Nikkis dad, Ron, was in denial not entirely
convinced that the number that appeared on a gadget
smaller than his cell phone could really identify such a
serious and life-altering disease.
It could. And for the next two days Nikki and her parents
would undergo a crash course in diabetes with the staff of
the Division of Endocrinology and Diabetes who would
explain the disease and how to manage it. They all began to
go through a large binder, page by page. Ron jokes, They
had the binder broken out into nice tabs and everything. I
just couldnt believe how many tabs there were.
There are many components to taking care of type 1.
Unfortunately, insulin isnt an exact medication. Severalfactors have to be considered in determining the amount
you give a child. Its also very difficult to control when a
child is sick, explains Hasan. Even a simple bout with flu
may result in some children requiring hospitalization.
NIKKIS STORY
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FEARF E A RThe first topic the family covered was shots the most difficult
part of the disease for Nikki to come to terms with. From that
day forward Nikki would need a minimum of six insulin shots
each day. I couldnt believe that my life was going to be so
different, she says. It wasnt so much the size of the needle, but
the number of shots Id need. The family practiced giving saline
shots to each other, something that made Ron, a self-described
needle-phob break out in a cold sweat.
The three of them would learn an entirely new vocabulary
that included words like ketones, nephropathy, glucagon,
and A1C. Theyd need to know the signs of hypoglycemia
and hyperglycemia, and what to do for each (sugar for
lows, insulin for highs). Theyd need to learn how to count
carbohydrates, and understand the rate at which different
types of food break down during digestion. Nikki would
also need to check her blood sugar several times each dayby poking her finger with a tiny needle called a lancet
something shes now done more than 10,320 times in less
than four years.
Through it all, Nikki put on a brave face. Her ability to
grasp the disease, and her willingness to help take on the
management of it surprised the Phoenix Childrens staff.
She dealt with it better than most adults would, says her
proud father. She was really absorbing what they were
telling her, processing the information and asking questions.
She really wanted to understand it.
INSULIN PUMPS
Look closely the next time you see a kid wearing a pager.
It might actually be an insulin pump. The pump contains
a cartridge that gradually pushes insulin through a tube
and into the body via a tiny catheter that rests under the
skin. Studies have shown that diabetics who use insulin
pumps have lower averaged blood sugar levels than those
who take shots. Pumps also allow diabetics to deliver
more precise levels of insulin. But the greatest advantage
for children is the convenience and quality of life as iteliminates the need for multiple daily shots.
DIABETES 101
TYPE 1 diabetes is an autoimmune disease
that occurs when the bodys own cells attack the
pancreas, leaving it unable to produce insulin. It is
not preventable. Individuals with type 1 account
for about 10 percent of all diabetics. Althoughtype 1 can strike in adulthood, most are diagnosed
before the age of 18. Approximately 10 percent of
those with type 1 have a family member with the
disease. There is an acute onset of symptoms that
may include increased thirst and urination, weight
loss, blurred vision, increased appetite, nausea,
vomiting, abdominal pain, and excessive fatigue.
Treatment requires multiple daily injections of
insulin. Type 1 and Type 2 diabetes can affect
nearly every major organ system in the body,
leading to a higher risk of heart and kidney
failure, stroke, blindness, nerve damage, and skin
breakdown. Tight control of blood sugar levels can
delay, or possibly prevent, long term complications.
TYPE 2 is a metabolic disorder where the body
becomes less effective at producing and using
insulin due to various factors that include age,
heredity, and obesity. Type 2 was once considered
an adult disorder, but is occurring at younger ages
as more children are now considered overweight or
obese. Type 2 is often diagnosed before symptomsare present. When symptoms do occur, they are
similar to type 1, but less severe and develop more
slowly. Type 2 can often be managed through diet
and regular exercise, but oral medications and/or
insulin injections may be necessary.
FROM THAT DAY FORWARD NIKKI
WOULD NEED A MINIMUM OF SIX
INSULIN SHOTS EACH DAY.
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GRIEFG R I E FAfter two days of training, and even more time spent
researching diabetes over the internet, Lee says the enormity
of it all finally hit her. I remember sitting on my bed that
second night, so upset and sad. There was such a weight that
I almost couldnt breathe. I really questioned if wed be able
to handle it.
But it wasnt just the 24/7 management of the disease that
was overwhelming. It was the long-term complications
tab of the binder that Lee couldnt even bring herself to
read. It was so sad to not only realize that Nikki was going
to have to deal with this disease every day, but that despite
our best efforts to manage it, the possibility of long term
complications is always there.
Dr. Hasan says coping with the complete change of lifestyle
is the hardest part for the kids. For parents, its the fear of the
unknown. They worry about what the future now holds for
their child because of the risk of complications. Its a difficult
discussion to have with parents. Its always their biggest concern.
To make this new lifestyle manageable, Lee says they had to
take it one day, one meal, and one shot at a time. But even
that can be easier said than done. Eating at home, where they
could measure and weigh the food was tricky enough. Trying
to figure out how many carbs were on Nikkis plate at theirfavorite Mexican restaurant was an educated guess at best.
Leaving Nikki with even a trusted friend or family member
would be more difficult as theyd also have to know how
to count carbs and give shots. School seemed less about
the classwork and more about fine-tuning Nikkis
treatment plan with teachers and nurses. And there
would be many a sleepless night for the couple as they
worried about Nikki as she slept, often sneaking into
her room with a flashlight to check her blood sugar without
waking her.
THERE WAS SUCH A WEIGHT
THAT I ALMOST COULDNT
BREATHE. I REALLY
QUESTIONED IF WED BE
ABLE TO HANDLE IT.
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ACCEPTANCEA C C E P T A N C EToday, the family barely remembers what life was like before
the disease. In fact, there are times when Lee and Ron do
consider themselves lucky. Seeing some of the other kids
at Phoenix Childrens helped us put things in perspective,
adds Ron. Even with all of the emotions we were feeling in
the beginning, we saw so many kids and families who were
dealing with something worse.
But putting things in perspective isnt so easy for children
and teenagers, who see life as they once knew it disappear
overnight. The disease makes children grow up very quickly
when theyre forced to shoulder so much of the responsibility
a reality of type 1 diabetes that parents cant prevent,
regardless of how much theyd like to. In the beginning
there were times when Nikki questioned why it had to be her.
Its become something we live with, but there are still dayswhen she just doesnt want to have it anymore, admits Lee.
And shes entitled to feel that way.
Lee says that even with all of the knowledge and experience
they have now, the worry doesnt go away. The lack of
predictability is frustrating. Nikki misses the
spontaneity of grabbing a granola bar out of
the pantry, going to birthday parties and
eating a piece of cake without calling her
mom to make sure shes counted the
carbohydrates correctly, or heading to
recess instead of the nurses office
after she eats lunch at school. It
can be annoying, she confesses.
Always testing or making sure I
have my supplies with me when we
go somewhere. You have to think
about it all the time.
She has to think about it a little less these days. Nikki now
wears an insulin pump (see sidebar on page 13), a pager-
sized device that delivers insulin via a small catheter that
rests under the skin of Nikkis arm. The pump dramatically
improved Nikkis quality of life as she now needs only one
shot every two to three days to insert the catheter. That takes
the place of nearly 20 shots a constant ritual that Nikki had
never stopped dreading. The pump gave me so much more
freedom. Now I dont have to decide if eating something is
worth the shot. If I want a second slice of pizza I just enter
the carbs in my pump.
Today the family spends less time thinking about the long-
term complications of the disease and more time focusing
on a cure for it. Researchers continue to make great strides
in understanding diabetic innovations, which have led tobetter treatment, and perhaps someday, prevention of new
cases and reversal of those already diagnosed. Camp AZDA,
a weeklong camp for kids with type 1 diabetes, has made
coping with the disease a little easier. Nikki has attended the
camp in Prescott for the last three summers, spending time
with other kids who know exactly what shes going through.
Nikki still plays volleyball and is on the swim team. Shes a
Girl Scout who loves shopping and having sleepovers with
her friends (who all made their American Girl dolls type
1 diabetics with an insulin pump and all). She says that
even though her friends dont exactly understand the disease,theyve always been supportive. So have her two older sisters,
Kelly and Brooke.
The disease has changed Nikkis life. But this fifth-grader
wont let it define who she is or what she does. In many ways
its just made her stronger and more mature than she was to
begin with. Its a complication in my life, but it hasnt held
me back, she states with confidence. I can still do anything
I want to do. It just takes a little more planning.
NIKKIS STORY
I CAN STILL DO ANYTHING I
WANT TO DO. IT JUST TAKES
A LITTLE MORE PLANNING.
P 1 5 H O P E S & D R E A M S