Tuesday, October 23, 2007

Ispolydipsia

My son is thirsty.

For most parents that sounds rather harmless, one of many
needs that any three-year-old has. At first, Garrett's request seems
particularly innocuous. He has always preferred drinking milk or juice to
eating. His constant running and playing would dehydrate any child, and he
shows no sign of illness. But when he looks up at me and says, "Daddy, I'm
thirsty," repeatedly over several days, I wonder if the damage has already
been done.
Soon Garrett's complaint becomes more urgent, and the water
flows right through his small body, causing frequent trips to the bathroom. I
try to break the cycle, telling him he's had enough to drink and hoping that
his craving will go away. But still he drinks. He is potty trained, and he does
all he can to hold the tidal wave of water coursing through him. On several
occasions, he groans in his sleep to avert wetting his bed. I rush into his
room, hustle him into the bathroom, and yank down his pajamas just in time.
Splash! The urine rushes out like water from a fire hose. A couple of times
the force is too great, and he pees in his bed.
"That's okay, buddy," I tell him. "We just can't drink so much
water at bedtime."
I am hoping for something, anything, whatever it takes to diminish
his longing. But the water has become his lifeline. I watch him hold the glass
in both hands, lift it carefully to his mouth, tilt it, and swallow again and
again. I had once been thirsty like that. It was many years ago, but I
remember it well.

* * *

In medical-speak, the word ispolydipsia — abnormal thirst. It's an early
symptom of diabetes: your body, suffering from elevated blood sugar, pees
out the excess glucose and triggers the demand for more water. As the
disease progresses, the body burns its own fat for energy, leading to a
similar cycle of insatiable hunger followed by rapid weight loss. These are
signs of type 1 diabetes, which is usually diagnosed in juveniles and treated
with insulin.
I was diagnosed with type 1 at fifteen, and like every parent with
diabetes, I scrutinize my kids — we also have a six-year-old daughter,
Amanda — every day for symptoms, real or imagined. Hunger. Thirst.
Fatigue. Weight loss. Emergency trips to the bathroom. Cuts that heal
slowly. Crankiness. Unusual cravings. Any aberrant behavior could be a sign,
however tenuous, of disorder in a child's finely tuned metabolic system. As a
diabetic, I learned early on that the price of health is eternal vigilance, but as
a parent, the price of devotion is chronic paranoia.
Garrett, at this stage, displays no other symptoms. He hasn't lost
weight, increased his appetite, or complained of tiredness. On the contrary,
he cannot look any better or behave any more vibrantly, a high-spirited little
boy with tousled sandy hair and limpid brown eyes. His preschool teachers
call him "Smiley" because he's always laughing. He loves sports — running,
tackling, kicking a soccer ball — and is already hitting live pitching in our
driveway. He's strongwilled — a nice way of saying he's stubborn. One night
we heard a loud thump in his room. He had climbed out of his crib and
crashed to the hardwood floor. We figured he had learned his lesson and put
him back in the crib. Minutes later, thump! He had repeated his escape to
the floor. At eighteen months, he was out of the crib. His pediatrician says
that, pound for pound, he's the strongest patient she has.
But all the signs of health are now misleading. A nagging cold has
slowed him down, and despite my coaxing, his desire for water continues to
be strong. Events take an eerie turn one day in September 2004 when I
interview Jeff Hitchcock in Boston for this book. Hitchcock's daughter,
Marissa, was diagnosed with diabetes in 1989. Finding little medical
information, he started a Web site about diabetic children from his home in
Hamilton, Ohio. The site was so wildly successful — 250,000 hits per day
from 149 countries and a raft of advertisers — that Hitchcock quit his
engineering job and now organizes conferences and programs as well. He is
revered by parents who feel neglected by health care professionals and find
his site informative and comforting. When I meet Hitchcock, I understand his
appeal. A lean man with graying hair, glasses, and a soothing demeanor, he
speaks optimistically about the day that improved therapies will eliminate
diabetic complications. But he also directs stinging criticism at the medical
field. This combination of hope and frustration resonates with any diabetic.
Asked what the success of his site reveals about diabetic care in America,
he says, "It stinks." And what should parents do if their child is receiving poor
care? "Fire the doctor," he says. "That doesn't happen nearly enough."
That night, Garrett complains during his bath that his feet and legs
hurt, and he again drinks several cups of water. He goes to bed but wakes up
around midnight, saying he doesn't feel well. He is thirsty, but I tell him he
just had a drink a few hours earlier. He again goes to the bathroom and,
sniffling and achy, climbs into our bed. I look at him in his baseball pajamas,
pale and uncomfortable. Until now, I have not mentioned anything to Sheryl,
my wife, about my fears. She knows about the genetic risks of diabetes, but
when I tell her that I'm going to test Garrett's blood sugar, she's surprised.
The glucose meter measures blood sugar in milligrams per
deciliter. The normal fasting range is less than 100 mg/dl. Between 100 and
125 represents "impaired glucose fasting," so 125 is the magic number —
anything higher is a sign of diabetes. I take my lancet and quickly poke
Garrett's finger for a drop of blood. He is too groggy to complain or even
notice. The blood comes out easily in a thick, gooey drop. The older meters
took thirty seconds or even a minute to read the value, but the newer
meters — mine is a OneTouch Ultra from Lifescan — has a five-second
countdown. I place the drop of blood on the test strip and prepare myself. But
the whole thing is anticlimactic.
I already know the result.
5-4-3-2-1.
The machine reads HI.
I have never seen such a reading and am momentarily confused.
HI? Why the hell is the machine suddenly greeting me? No, no,
no. Not HI as in HELLO, HI as in HIGH. As in: real HIGH. As in: your entire
life has just changed. I curse Lifescan under my breath. With the millions of
dollars it makes from diabetics, you'd think it could afford to put two more
letters on an elevated glucose reading instead of subjecting us to this
incongruously cheerful, heartbreaking welcome.
"He's high," I tell Sheryl. "I think we'll have to take him to the
hospital."
She grabs Garrett and hugs him, and will soon dry her tears with
the bloodstained tissue that I used to wipe his finger. I get him a water bottle
and apologize for not letting him drink more. I have tried to deny his body's
downward spiral, to will it back to health by limiting his fluids. But my son is
thirsty. "Here, buddy, drink this," I say.
"Drink as much as you want."
I call my brother, Irl, who's had diabetes since he was a child and
now, as an endocrinologist, runs a large diabetes clinic in Seattle for the
University of Washington. He asks if Garrett has ketones, a fatty acid burned
by the body of an uncontrolled diabetic that spills out in the urine. Almost
1,900 diabetics die each year from ketoacidosis, and a small child, once
ketonic, can become fatally ill. A simple urine or home blood test can
determine the presence of ketones. I tell my brother that I don't know yet, but
I will keep him posted.
Sheryl calls the answering service for Garrett's physician; with no
one on call, the operator bounces us to another practice. A doctor finally gets
on the line and tells us to take Garrett to Children's Hospital Boston, about a
half-hour drive from our house in Needham. I had been across the street from
Children's earlier that day when I spoke with Hitchcock at the Joslin Diabetes
Center. We talked about his Web site, Children with Diabetes. Now I will
return that night with my son in the back seat — a child with diabetes.
Our daughter is sleeping, so Sheryl stays home while I take
Garrett. When he sees her packing his overnight bag, he's excited. "Are
we going to a pajama party?" he asks.
"No, buddy," I say. "We aren't going to a pajama party."
I tell him we're going to the hospital without explaining why. He
has never really been sick and hadn't been in a hospital since he was born.
We load up the Honda Pilot, and Sheryl kisses Garrett and me good-bye.
We briefly hop on the highway, then take Route 9 toward Boston. The road,
normally chaos, is now dark and quiet, with streetlamps splashing islands of
light on the pavement. The city is at peace. Soft music drifts through the car.
Still in his baseball pajamas, Garrett looks calmly out the window, probably
thinking he's going on an adventure, a late-night ride to the hospital —
or "HOTH-ibal," as he calls it, with a slight, endearing lisp — something he
can tell his friends about the next day.
We arrive in the Emergency Room at 2 a.m., Garrett in my arms.
The place is empty. A man at the information desk points me to a
woman in a cubicle who will handle Garrett's admission. We sit down.
"Do you have insurance?" She does not look up.
I guess if you enter a hospital in the dead of night with your son
bleeding from an open wound, choking, or screaming, someone will first ask
if you need medical assistance. Otherwise, reimbursement takes priority.
"Yes, we have insurance."
We are sent to a room where a nurse takes some information and
Garrett is weighed — thirty-three pounds. Then we move to another room.
Garrett sits on my lap, and I assure him that everything is going to be okay.
He doesn't ask any questions as hospital staff members drift in and out with
glucose machines, needles, tubes, and other devices. It appears that we are
the only customers on the floor, and a calm settles in. But that soon ends.
The nurses' first task is extracting Garrett's blood. They initially
use a lancet to get a drop from his finger, which they test in a meter. But now
they need tubes of blood, not just drops, so they have to draw it from his
vein. I hold Garrett on the table while one of the nurses positions the needle
above his arm. As she drives it through the flesh, Garrett lets out a scream
unlike any I have ever heard. Shocked by the attack, he yells, squirms, grits
his teeth, and howls some more. "Daddy, that hurts me! Daddy, that hurts
me!"
"I know, buddy, but they're almost done. They're almost done."
But they aren't. The nurse pulls back the plunger but draws no
blood. She tries rotating the needle, increasing the pain and getting more
resistance from Garrett. But she has missed the target, so she removes the
needle and plunges it again into his arm. Garrett tries to escape, but I hold
him down. Tears are rolling down his reddened face as he yells again, "That
hurts me! That hurts me!" The nurse explains that it's often hard to hit a vein
in a young child and says she will try the back of his hand instead — which,
for my money, does not seem particularly promising. I've had blood drawn
well over a hundred times, always from the arm. The puncture stings, but at
least the arm has some cushion, while the hand is as hard and unforgiving as
parched earth.
The needle lunges into Garrett's hand, and this time he closes his
eyes and cries even louder. Still no blood. The nurse again maneuvers the
needle, fruitlessly inflicting more pain until she gives up. I realize I should
have said no to the gouging of his hand; while Garrett has not yet been
officially diagnosed, I have learned a crucial lesson: do not assume health
care providers know what the hell they're doing.
The nurse eventually hits the vein in his left arm, and somewhere
amid the screams and tears and struggles the blood is drawn. I'm certain it
wasn't just the needle that hurt. Garrett is also confused and angry. He has
done nothing wrong, but it feels as though he is being punished. I try to
explain, but how do you convey the enormity of a chronic, life-threatening
disease to a three-year-old? How do you say that he will have to take insulin
for the rest of his life, that he will be denied many foods, that he may pass
out from low blood sugar, and that every organ in his body is now at risk?
"Garrett, I know it hurts, but you have a boo-boo inside your body,
and we have to make it better . . . I'm so sorry, buddy, but we have to make
it better."
I ask a nurse about Garrett's blood sugar. "It was high," she
says, "but we don't have an exact reading." Great. Hospital's got the same
damn meter I have.
I call Sheryl on my cell phone to confirm the diagnosis. Of course
she's awake. "He's doing fine," I tell her. She doesn't need to know how
much her son is hurting.
Garrett's night has just begun. His arm is wrapped with gauze and
taped to a plank of wood, keeping the limb straight to allow an intravenous
tube to be inserted. The tube is attached to a bag of saline, which will help
rehydrate him until — as the doctor later explains — Garrett
becomes "metabolically stable and able to eat on his own." The precaution is
understandable. Most newly diagnosed children have been sick for some
time and require aggressive intervention. Garrett was never so ill that he
couldn't eat or drink, and he may have been fine even without the IV. But now
he can't bend his arm, and he struggles to free it from the plank. The nurses
also places a tube in Garrett's nose, to determine if he is exhaling carbon
dioxide, which occurs during ketoacidosis and would signal the severity of his
condition. The device is one more uncomfortable entanglement.
A nurse returns with information: Garrett is not ketonic, but his
blood sugar is 550. I know how achy and uncomfortable I feel when my blood
sugar spikes to 300. Even though he was almost twice that, he did not ask to
stay home from preschool or curtail any activities. I'm sure he's been running
high for weeks, but with the exception of his thirst, he rarely complained.
Tough kid.
By 4 a.m., exhaustion has worn him down. He still fusses with the
tube in his arm and the intolerable stick of wood, but he finally falls asleep.
At some point, he is given his first injection of insulin.
Garrett had experienced pain before. Shots from the doctor.
Scraped knees. A bumped head. Of course he has cried. But never this. His
short life has mostly been kisses and hugs and cuddles, always very
physical and affectionate, and his outpouring of love and energy was always
reciprocated by those who adored him. Now he's been robbed of his
childhood, I think, and he will never know what life is like without diabetes.
Then again, I was diagnosed at fifteen, and I can barely remember myself.
Friends tell me later that Garrett is fortunate to have a diabetic for
a father, but I'm not sure. Most parents with a newly diagnosed child fear the
unknown. I knew too much.
When the sun comes up, we are in a hospital room, and Garrett is
finally relieved of the tube in his nose and the IV in his arm. He enjoys
pushing the buttons on the retractable bed, and television cartoons bring
some relief. A nurse comes in, and I tell her that we have to be out of here in
a couple of days because Garrett has a soccer game on Saturday. She
pokes his finger for a morning blood sugar.
"It's 279," she reports.
A weird sense of elation suddenly comes over me. This much I
understand: before he got to the hospital, before he received his insulin and
his IV tube and his saline, my son was dying. It wasn't imminent, but he was
dying, his body unable to fulfill its most essential function — converting food
into energy. Eighty-two years ago, before the discovery of insulin, he would
have suffered a swift, miserable death, perhaps fading slowly at first but then
rapidly and inexorably. If he were lucky, he would have been put on a
starvation diet, which would prolong the agony but not change the outcome.
That would have been his fate, his destiny, as it had been for countless
others in the three millennia since diabetes was first recognized.
But the insulin saves him, so for the moment I do not despair over
his burden but feel a surge of happiness. My son is no longer thirsty.

Excerpted from

Cheating Destiny: Living With Diabetes, America's Biggest Epidemic
Copyright © 2006 by James S. Hirsch. Reprinted by permission of Houghton
Mifflin Company. Buy this book at Barnes & Noble