Parenting Children with Diabetes A Guide to Understanding

and Managing the Issues

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Contents

Cover
Half Title
Title
Copyright
Contents
Introduction
1 The Day Everything Changed
2 What the “Diabetess Diagnosis” Means
3 Managing My First Shot and My Family
4 What Going Back to School Means
5 Deescalating the Defiant Child
6 Navigating the Impact of Out-of-Control Blood Sugars
7 Managing Low Blood Sugars
8 Navigating High Blood Sugar Hell!
9 Addressing the Problems at School
10 The Continuous Glucose Monitor Experience
11 The Insulin Pump Process
Epilogue
Appendix A: 100 Dos and Don’ts to Make Your Child Smile!
Appendix B: Resources
Appendix C: 504 Sample
Bibliography
Introduction

Hi, my name is Eliot LeBow. I was diagnosed with type I diabetes in 1977
and then went on to become a diabetes-focused psychotherapist and
certified diabetes educator. I would like to share with you and your family a
part of my journey as well as what several of my clients have gone through
while living with diabetes during childhood in order to educate others like
you about what it feels like to have this disorder and what you may not
understand as the parent of a child who has diabetes. I wrote this book for
parents of children with diabetes and anyone who wants to gain insight into
how it feels to have diabetes. I hope you learn a lot from my clients’
experiences, feelings, and needs as children who grew up with this
condition.
I designed this book as a guide to understanding what your family
member or friend who lives with diabetes goes through on a daily basis and
how you can help them. Through the recounting of various events in my
clients’ lives, I will share their feelings in the “Child’s Perspective”
sections. I will also give parental advice for how to maneuver through the
challenges of raising a child with diabetes. For adults who grew up with or
have diabetes, I provide insights into what you may have faced as a child—
and what you still may be facing on a daily basis.
Growing up is difficult for everyone, but it is especially hard for children
with diabetes in a world full of instant gratification. Chocolate, hard candy,
soda, cotton candy, ice cream, cake, not to mention those Reese’s peanut
butter cups (mmmm). Oh, and let’s not forget the ice cream man: Good
Humor or Mister Softee, whichever one haunts your neighborhood, with his
bell ringing and the truck that sings that unmistakable tune over and over
again, beckoning every child on the block to come running out to meet him
to buy and enjoy his or her treat. This is the nightmare of every child with
diabetes—and it affects every parent of a kid living with diabetes.
Relationships become strained and harder to keep intact for parents and
their children due to fluctuating emotions, feelings of guilt, and other
issues. Children with diabetes may feel different and isolated from their
peers since they can’t always eat the same things as everyone else at the
same time. They may feel angry or sad, and even feel at times that it is their
fault they got diabetes, as though getting it was punishment.
Oftentimes, the things we do as parents to protect our children from the
dangers of the world become hurtful instead of helpful. This is especially
true with children living with diabetes. Sometimes overprotecting or
underprotecting while raising a child with diabetes can cause children to act
out, leading to grave present and future consequences, including a wide
range of physical issues and psychiatric disorders: attention deficit disorder
(ADD), attention deficit/hyperactivity disorder (ADHD), learning
disabilities, emotional problems, addictions, and others.
In the “Clinical Advice” and “Parental Advice” sections, I will help you
to explore how improving the relationship between you and your child can
successfully increase your child’s ability to maintain good blood sugar
control and reduce psychiatric, emotional, and educational problems. In
some cases, this improvement may stop these problems from occurring
altogether. Instead of protecting, maybe it would serve our children with
diabetes better if we could be supportive of them during the issues they will
have to face—some with you and others on their own.
The impact of poor diabetes management can take many forms, ranging
from poor physical health to the loss of cognitive functioning. It can also
cause poor grades in school, which can lead to being placed in special
education, causing more isolation and emotional upheaval. Children over
time begin to feel helpless and that diabetes is not something that is
manageable. Instead, it feels like more of a burden that prevents them from
being normal. Other people in their surroundings may respond differently to
them, like the school nurse, teachers, and camp counselors who feel they
know what’s right for the child with diabetes, even in many instances when
they don’t. Oftentimes, a child with diabetes will be told “you can’t have
any” when everyone else is being given candy or chocolate, needlessly
isolating the child from their peers, when in fact a child with diabetes can
eat sweets simply by adjusting his or her insulin. At home, a child may be
punished by a parent for eating candy. This situation may cause the child to
feel angry and frustrated—and the parent to feel guilty. As time goes by, the
child may start isolating himself or herself from the family and his or her
peers. Some other issues stemming from poor diabetes management include
depression, low self-esteem, psychiatric disorders, low blood sugars, high
blood sugars, and much more.
Since I was diagnosed with diabetes in 1977 at age six, I have had
multiple learning disorders, experienced feelings of depression, and
struggled with attention deficit disorder (ADD), all which I have managed
to overcome in order to become an author, an abstract painter, and an expert
in the field of psychotherapy for people with diabetes, as well as a well-
rounded and overall happy person. In this book, I have chosen to share my
clients’ experiences, along with one or two of my own, with poor diabetes
management and discuss how to help your child to avoid some of the
pitfalls that have impacted their lives so he or she can grow up happy and
healthy while learning to manage his or her diabetes.
 1

The Day Everything Changed

FRIDAY, JULY 16, 1982

It was a warm summer day, the kind with only a few puffy clouds in the
crystal blue sky. John was six years old. His life was about to change
forever, but to him it was exciting. Just ten days earlier, he had turned six
years old. He lived in Gaithersburg, Maryland, on Tulip Grove Road in a
nice, three-bedroom house with three stories, a deck, and a two-car garage
on the corner of the block. You could enter through the kitchen or the living
room. The bedrooms were on the top floor, and in the basement there was a
recreation room and laundry room. His family’s house was one of the first
ones built in this community, which was surrounded by farms when they
moved in four years earlier. Now that the community was complete, only
three of the farms were left. In the back, there was a garden and a swing set
with lots of land. John was a typical kid without a care in the world, and
this house was his universe.

THE COOKIE MONSTER

He was so excited that his favorite babysitter was watching him today. She
had promised to bring him a big plate of chocolate-chip cookies. He
remembered watching her walk through the kitchen door and gently set a
large plate covered in plastic wrap on the kitchen table. He ran up to the
table and asked her if he could have some right there and then. She said,
“John, you need to wait ’til lunch.” His mom agreed.
 Shortly after Mom left, John’s babysitter opened the package on the table
and called him into the kitchen. (Note: This was the last time and last day
that he would be allowed to have chocolate-chip cookies without a care in
the world . . . without an argument, a negotiation, lying, or cheating. He
didn’t even know it yet. Wait! I’m getting a little ahead of myself.) As John
walked into the kitchen, she was standing there, holding a cookie in her
hand as she said, “Happy birthday, dear! Enjoy as many as you want.” He
must have eaten at least ten large cookies in the first hour. He was so happy,
and they were really good. His babysitter sat on the couch and watched TV
most of the day as he played with his wooden blocks, Tonka trucks, and
Tom, his cat. Tom was a fat, loveable, gray tabby who liked to lie in the sun
in front of the living room window, and John loved lying there with him.
A few hours later, while lying with the cat, John noticed that he had to go
to the bathroom to pee. Ten to fifteen minutes later, he had to go again—and
every ten to fifteen minutes after that. By 4:00 p.m., his mother was home.
The cookies were gone. John was sitting at the kitchen table as his mother
walked through the kitchen door. When he said to his mom, “Guess what? I
peed forty times today,” she had a talk with the babysitter. Next thing he
knew, his mother was on the phone with the doctor, and he didn’t get to eat
dinner. He was lying in the back of his mother’s Datsun 240Z hatchback,
looking up and out through the window at the blue sky with the fading sun
way out over the horizon as he headed toward the children’s hospital.

CHILD’S PERSPECTIVE
The child goes from feeling fine to feeling woozy and hollow inside as the
day goes on. He can’t stop drinking. There is confusion and some
fascination (at least for John) with the increase in urination. Fear starts to
set in as the adults around him look very serious all of a sudden, whisper to
one another so he won’t hear their concerns, and/or start panicking. John
remembered being pulled by the arm from the house toward the car in a big
hurry and being very scared. No one explained what was going on as it was
happening—which made it even scarier.

PARENTAL ADVICE
Don’t freak out! Calmly, call your child’s pediatric doctor, and then take
your child to the nearest hospital as soon as possible. Make a concerted
effort not to call in front of your child, as John’s mother did. He only got
half of the conversation, but he clearly saw the fear on his mother’s face,
which made him fearful too. Your child might be excited or curious about
what has been happening to him or her. Don’t confuse it for understanding.
Depending on the age of your child, he or she may not comprehend what is
happening. No matter how much they may act like an adult, remember that
they are still children and must be taken care of emotionally. If your child is
old enough to understand, you may want to explain that they may be sick
before you call their pediatrician. Your child will be very scared. You need
to keep calm and focus on comforting your child. When the doctor tells you
to head to the hospital, tell your child that you need to go to the hospital to
make sure nothing is wrong.
Remember, the doctor has already told you a lot of information. You will
be scared yourself, but remain calm. You need to be there for your child.
Keep in mind that until you arrive at the hospital, all of the tests have been
completed, and the doctor has informed you that your child has diabetes,
you simply don’t know what is wrong. Don’t jump to conclusions that will
only make you more scared and upset. Try to get someone to go with you
and your child for emotional support—for you. Stay with your child
whenever possible. If not, while checking in, have the friend sit with him or
her while you do the paperwork. All hospital procedures are different. Some
places will not require you to go into the emergency room; others will. Ask
the pediatrician when you have him on the phone and get his
recommendation on where to go. In some areas, there are special children’s
hospitals. If possible, go there. If your insurance pays for it or you can
afford it, get a private room for your child to avoid any conflicts with other
patients.

CLINICAL ADVICE
What are the symptoms to look for in children and adults?
Type 1 diabetes, originally called juvenile diabetes, is an autoimmune
disorder of the insulin-producing beta cells of the pancreas. It is believed
that white blood cells that are used to attack and kill foreign bodies in the
bloodstream see the cells that produce insulin as foreign bodies and
therefore kill them, permanently destroying them. White blood cells, or
leukocytes, are part of the immune system, which defends the human body
against both infectious disease and foreign materials. These leukocytes
mistake the beta cells for foreign objects and attack them until none are left
to produce insulin.
The most important symptom to look out for is frequent urinations all
day long. As sugar builds in one’s blood with no insulin available to unlock
the fat cells that store glucose, one’s blood sugar rises. It is true that the
liver can store and process sugar, but it soon becomes too much to handle.
The kidneys can’t filter sugar back into the bloodstream. To dilute the sugar,
the body draws water from the blood, filling the bladder, which causes
frequent urinations. The longer this situation continues, the greater the
chance of ketoacidosis. This is a serious condition that can lead to a diabetic
coma or even death. It normally takes days to reach this point, and the
symptoms are visible much earlier on. Ketoacidosis is the result of very
high levels of ketones in your body. Ketones are acids that build up in the
bloodstream when one’s diabetes is out of control from high blood sugars.
Normally people with diabetes test for them often as part of controlling and
managing their diabetes.
The next symptom to watch for is increased levels of thirst, as your child
wants to drink around the clock. The body starts to dehydrate as it reaches a
state of ketoacidosis.
Another symptom that can occur is drastic weight loss for no apparent
reason. Since the sugar/glucose is being urinated out of the body, the body
has no source of energy to run on. It starts to break down fat and muscle
tissue for energy.
All of these symptoms are followed by weakness and fatigue. Insulin is
needed to convert glucose into energy for the cells of our body. With
glucose remaining unconverted in the bloodstream, the cells begin to starve
—causing fatigue.
 2

What the “Diabetes Diagnosis”

Means

FRIDAY, MAY 27, 1988

On the first morning in Mary’s hospital room, she was thinking about her
last birthday and how great the cake had tasted and how much fun it had
been. She was looking forward to her next party, but she was upset that she
would be in the hospital on her birthday. Her mom said that it was going to
be all right, that the cake had already been bought.
Mary was in the hospital for two nights and two days. The first night,
well, she didn’t remember much. Her mom waited in her hospital room that
night until her dad arrived. They both were saying that things were going to
be all right, but she could see the pain on their faces. She didn’t remember
much about that evening except that she didn’t want her parents to leave.
Her mother came into the room on Saturday morning. She was crying.
She grabbed Mary and held her. Mary asked her mom why she was crying,
but she never got a response. Later that day, the doctor came in to see her.
Her mother was there when the doctor came in, and he proceeded to
inform Mary and her mother that she had diabetes. Mary asked what that
was. He said that her body was no longer producing insulin. He also told
her that she’d have to take shots of insulin from now on. She was scared,
but she asked him how long she’d have to take these shots of insulin
(whatever that was). “Will my body ever make insulin again?” she asked.
She really didn’t understand much of what he was telling her, but she did
understand one thing after he answered her question: her body would not
produce insulin again—ever. He explained that she’d have to take shots for
the rest of her life. A harsh reality to deal with for a soon-to-be seven-year-
old. Tomorrow she would be a child pretending to be an adult dealing with
an adult problem.

MAN PLANS AND GOD LAUGHS

So here is how the plan was supposed to go: Mary’s father was going to
give her shots in the morning and evening time, and she was to test her
urine for high and low levels of sugar four times daily. She was told to test
(under the supervision of an adult) once in the morning, before lunch,
before dinner, and before she went to bed. As the doctor laid the plan out,
she got more scared of all these things she would have to do. The day
before, her biggest worry was that she wouldn’t get to play with her Lite-
Brite. If her sugar was too high, then the insulin needed to be adjusted, and
so on. It was already over her head. Toward the end, the doctor asked for
her opinion on how she wanted to manage her sugar levels. At that time,
there were two choices. Today children are encouraged to be put on insulin
pumps immediately, but they didn’t have this choice back then. Mary could
either adjust the insulin in accordance with the quantity of food/sugar she
was eating at each meal or keep the insulin quantity fixed and weigh the
food instead so she would eat the same amount of food for each meal. She
picked (and her mother agreed with) the first option. (More on this decision
is discussed in the diabetes management styles in the “Clinical Advice”
below.)
The doctor asked whether Mary had any questions, and she didn’t. Her
mother did—lots: What do I do if her sugar is too low, if it’s too high, if she
wants to ride a bike, if Jupiter and Mars are aligned? You name it, she asked
it. The doctor left shortly after, and Mary’s father came in later that day. He
spent all day practicing giving a shot to an orange. He spent eight hours
practicing because she was being released on Sunday, her birthday, he told
her. But as her dad told her that he was going to give her the shots, Mary
already knew it wasn’t going to happen. She didn’t remember much more
of that day, but she did remember later that night. She had no rules. She
could stay up as late as she wanted. She watched movies on TV and ran up
and down the hallways, throwing her stuffed animal in the air and catching
it. A nurse eventually asked her to go back into her room. She did and
watched some more TV until she fell asleep.

CHILD’S PERSPECTIVE
It is very scary for a young child to be alone in a strange place like a
hospital. When Mary’s mother came in crying, it confused her. After all, she
didn’t get hurt; Mary did. Mary wanted her mother to stop crying and ask
her how she was. She was the sick and hurt one. She asked herself, “Why is
Mommy crying, and what is wrong with her?” She worried that if
something was wrong with Mommy, who would be there for her? Being
told that you have diabetes and that it will be forever is more than scary.
You feel alone, confused, angry, and sad and that there is something wrong
with you—all at once. The thought that ran through Mary’s head that
Saturday night was “What did I do wrong to deserve this?” Since she did
something wrong, she had to do something right to reverse it—but what
was right?

PARENTAL ADVICE
Ask the doctor whether you can stay with your child overnight and, if you
can, make sure at least one parent stays (if not both). Make sure that
someone brings your child’s stuffed animal, wooby, or anything that your
child is attached to from his or her bedroom at home, especially if it is
something your child sleeps with every night. Remember, children can be
very observant. Stress and worry show on people’s faces, so even when you
tell them that everything will be all right, they may get a mixed message.
Better to say what you really know . . . but because you don’t really know
whether everything will be all right, be honest but comforting. For example,
you could say, “I know you’re scared and worried, but whatever happens,
we are here for you and you are not alone.” Then show it by spending as
much time with your child as you can in the first few weeks. This is no time
to go to work. Your child needs you now more than ever; whatever else is
happening in your life can wait. Your child needs you to be a strong parent.
I know you are scared too, but he or she needs you. If you spend this time
crying or arguing with everyone and anyone, then your child will feel alone
and abandoned. Constant reassurance that children will not face diabetes by
themselves is helpful throughout the whole process.
CLINICAL ADVICE
There are several different styles of managing diabetes. Which one is best?
I will do my best to give you the positives and negatives. There are three
different types of distinct self-management styles for type 1 diabetes: the
methodical style, the adaptive style, and the inadequate style. To help you
better understand the three management techniques, we will need to first
look at how people with diabetes measure the level of sugar in their blood.

Defining the HbA1c

HbA1c is a measurement of the amount of glycosylated hemoglobin in
your blood. Glycosylated hemoglobin is a molecule that attaches to glucose
(blood sugar) in red blood cells. The higher the HbA1c you have, the more
glucose there is in your blood over a two- to three-month period. For
optimum control, the HbA1c test should be taken every three months. The
higher your HbA1c levels are, the greater the risk of developing future
problems such as heart disease, nerve damage, eye disease, kidney disease,
and stroke. If your HbA1c remains high for a long period of time, the risk
will increase. When a child or an adult with diabetes maintains healthy, age-
appropriate levels of HbA1c, they lower the risk for diabetes-related illness
to manifest. For adults, healthy levels are 7 percent or below.
If your child’s HbA1c is higher than 8.5 percent, depending on age (set
by the American Diabetes Association), then treatment (insulin, quantity of
blood tests, etc.), exercise routines, or diet will need to change. A HbA1c
level of less than 7 percent means that the blood sugar average is less than
154 mg/dL when you average all the self-monitoring blood glucose tests
taken over a three-month period. The lower the average blood sugar level,
the higher the risk of having a low blood sugar reaction (less than 70
mg/dL).
On average, the HbA1c level of a person without diabetes will range
between 4 and 6 percent. Blood sugars of 70 mg/dL or lower are dangerous
and should be avoided. Most doctors I have encountered want your sugar
levels to be between 70 and 120 mg/dL. The ADA recommendation is a
target area of 70 mg/dL premeal to 130 mg/dL two hours post-meal for
adults, with an after-meal peak of 180 mg/dL. The American College of
Endocrinology actually has a safer target area of 110 premeal to 140 mg/dL
two hours postmeal. This range can relieve emotional stress and pressure
for some people with diabetes, as it may be more obtainable. The American
Diabetes Association has set age-appropriate levels for HbA1c targets:

1. For children younger than six years old, the target is 8.5 percent.
2. For six- to twelve-year-olds, the target is under 8 percent.
3. For teens (ages thirteen to nineteen), the target is under 7.5 percent.
4. For adults, the target is under 7 percent.

To help simplify the relationship between mg/dL results and HbA1c, see
table 2.1, which shows the correlation between HbA1c levels and blood
glucose mg/dL as seen on most self-testing instruments. In a later
discussion, we’ll dig deeper into the relationship between high HbA1c and
learning and psychiatric disorders. For now, simply be aware of the healthy
levels for the person with diabetes you know and care for.

Table 2.1.

HbA1c mg/dL HbA1c mg/dL HbA1c mg/dL

4 68 8 183 12 298

5 97 9 212 13 326

6 126 10 240 14 355

7 154 11 269 15 384

Structured Meal Planning

The first type of meal planning is called the methodical style, in which
you create careful meal plans and accurate insulin injections. I like to think
of this one as the “cafeteria style” where all meals are portioned and
measured. If your child is on a two-hundred-carbohydrate meal plan, each
portion size for each meal is measured in grams and weighed on a scale to
confirm the resulting carbohydrate intake. Your child’s insulin intake is
regulated based on the amount of carbohydrates they ingest, so this meal
plan ensures that your child eats the same amount of carbohydrates and gets
the same amount of insulin for each meal. What is not taken into account is
exercise (which burns sugar) or illness (which will lower your metabolism),
plus a lot of other factors that can affect blood sugar levels. These are often
hidden variables that can disrupt the intended structure of this style of
management. This style requires a strict diet, which is particularly hard for
adolescents, but some children do very well with the structure. However, no
matter how well a child does on it, once they reach adolescence most
children start to mismanage their diabetes. Set times, types, and quantities
of food on this type of plan leave no room for flexibility if the ice cream
truck is parked in front of your house. The methodical style gives great
structure and consistency for younger children. However, due to life
changes and unpredictability later in life, it is tough to sustain this structure
and not realistic to implement it indefinitely.

Balanced Food Planning

The adaptive style is more complex but allows for tighter control, better
blood sugars, and more flexibility. So . . . we were saying in the last
example that the ice cream truck is parked in front of your house and your
child with diabetes hears the bells. This is not a problem for the adaptive
style of management; just give a shot of Humalog or other rapid-acting
insulin, and it’s ice cream for everyone! I have personally used the adaptive
style for thirty years. This style works best with an insulin pump. For those
manually injecting rapid-acting insulin with a syringe or insulin pen, it may
seem a little more daunting, but it can be done and is done by millions of
children and adults with diabetes every day. For those not on the pump, a
second but long-acting insulin is needed. Long-acting insulin works for
twenty-four hours, slowly releasing insulin into the body to cover the
amount of insulin needed for proper maintenance.
When one is using long-acting insulin alone, blood sugar stays consistent
throughout the day (if other variables don’t interfere). This process is
similar to an insulin pump that slowly releases insulin into the body all day
long. So if your child is on long-acting insulin, then when your child eats,