It's Not Just Growing Pains A Guide to Childhood Muscle,

Bone, and Joint Pain, Rheumatic Diseases, and the Latest

Treatments

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This book is truly dedicated to the many children around the world with
muscle, bone, or joint pain or arthritis—and to their families and the
physicians and other professionals who care for them. It is intended to
help them by helping parents and professionals to be sure these children
are being properly diagnosed and treated.

On a more personal note, I would like to dedicate this book to the memory
of five physicians who greatly inspired me but are no longer with us:

Dr. Harry O. Zamkin, a pediatrician who loved his patients;

Dr. Virgil Hanson, a pediatric rheumatologist who taught me that pedi­
atric rheumatology was not learned from textbooks—it is learned by
listening and carefully evaluating the children you treat, every time
you see them;
Dr. Barbara Ansell, a pediatric rheumatologist who taught me that an
“atypical case of A” was most likely a “typical case of B” that I had not
thought of, and so much more;
Dr. Arthur D. Schwabe, a gastroenterologist who taught me to never
stop asking questions of the children, their families, and myself until
all the answers fit together and made sense;
Dr. John Decker, for many years the “Dean” of rheumatology at the
National Institutes of Health in Bethesda who inspired so many by
his quiet confidence combined with a willingness to endorse any idea
that seemed sensible, no matter that it had “never been done before”;

and last, to Dr. Jack Klippel (who is very much still with us!), for con­
tinuing to say, “If not you, who? It’s your idea—do it.”
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 Contents

Introduction xi

How to Use This Book xv

PART I: M Y C H I L D C O M P L A I N S O F PA I N

1 Growing Pains? 3
(The most common right and wrong answer!)

2 Figuring Out What’s Wrong 7

Taking and giving a history
The complete physical examination
Laboratory tests and other evaluations

3 Common Causes of Pain 20

Knee pain
Hip pain
Back pain
Neck pain
Foot, ankle, heel, and toe pain
Elbow, shoulder, wrist, and finger pain

4 The Child Who Hurts All Over 56

5 Sports Injuries 63

vii
viii Contents

P A R T I I : T H E R H E U M AT I C D I S E A S E S A N D R E L AT E D
CONDITIONS

6 Why Do Children Get Rheumatic Disease? 79

7 Juvenile Arthritis 81

8 Uveitis: Eye Complications of Juvenile Arthritis

and Related Conditions 113

9 Spondyloarthropathies: Enthesitis-associated Arthritis 117

Forms of spondyloarthropathies
Juvenile ankylosing spondylitis, and ankylosing spondylitis
Reactive arthritis: Infection-associated arthritis and
Reiter’s syndrome
Psoriatic arthritis
Arthritis associated with bowel disease
Miscellaneous conditions related to spondyloarthropathies

10 Lyme Disease 140

11 Systemic Lupus Erythematosus 149

12 Mixed Connective Tissue Disease (MCTD) 189

13 Sjogren’s Syndrome 194

Children with dry eyes and dry mouth

14 Raynaud’s Phenomenon 198

15 Scleroderma 203

16 Dermatomyositis and Polymyositis 221

17 Kawasaki Disease 231

18 Benign Hypermobile Joint Syndrome and

Ehlers Dahnlos Syndrome 238

19 Fibromyalgia and Chronic Fatigue Syndrome 242

20 Reflex Sympathetic Dystrophy, Reflex Neurovascular

Dystrophy, and Complex Regional Pain Syndromes 252

21 Osteoporosis and Osteopenia 257

 Contents ix

PART III: LIVING WITH A CHILD WHO HAS A

CHRONIC CONDITION

22 Medications and Immunizations 263

23 Alternative Medicine: Vitamins and Supplements 315

24 Understanding Laboratory and Diagnostic Tests 324

25 Reconstructive Surgery 361

26 Family Issues 367

27 Getting the Best Results for Your Child 373

28 What Else Can I Do? 386

Appendix: Resources 389

Glossary 397

Index 403
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 I n t ro d u c t i o n

This is not a textbook. It is a guidebook. Like a traveler’s guidebook it will

help you find your way in unfamiliar territory. This book provides both
the information an intelligent parent of a child with muscle, bone, or joint
pain or arthritis needs to make sure his or her child is getting the best care
and the information a health professional, unfamiliar with pediatric rheu­
matology, needs to guide them. My goal is to help you understand what is
happening to your child (or the child you care for) and why.
For parents, this book will serve as a guide to help understand the
many causes of muscle, bone, and joint pain, to help understand their
doctors’ decisions, and to help understand what to expect for their child
in the future. This book will give parents the information necessary to
ask meaningful questions and properly evaluate the alternative choices
available for their child’s care.
For physicians, this book is designed to help in the recognition and
care of children who need to be referred to a specialist. Often parents
will seek help from their primary physician or other health professionals
because they have questions about the specialist’s recommendations. This
book provides the information needed to explain these recommenda­
tions and help parents understand their choices. It also provides the in­
formation necessary to allow health care professionals to ask the specialist
meaningful questions.
This is not a textbook of pediatric rheumatology or pediatric orthopedics.
It is a guide to the chronic rheumatic and orthopedic conditions of child­
hood. Like every guidebook, it does not cover everything. I have empha­
sized the more common conditions and the more important problems. Not
xi
xii Introduction

everyone will agree with all that I have written—just as traveler’s guide­
books may disagree on which are the best restaurants and hotels in a
given city. If you are looking for long lists of detailed references, put this
book down. The phone book will tell you every restaurant, every hotel,
and every museum in the city with complete objectivity. A guidebook
will not list them all but will tell you which ones the authors believe you
should choose. This book will provide you with the insights I have gained
from over twenty-five years of experience in caring for children with
muscle, bone, and joint pain and rheumatic diseases.
In this day and age, millions of dollars are spent annually on research
into causes of disease and newer medications, but few of the children I
see do poorly because doctors lack the necessary tools to treat them. The
majority of children with rheumatic disease do well. Most who do poorly
do so because too much time elapsed before they came to proper medi­
cal attention or because their parents and caregivers had too little under­
standing of the many treatments available and the importance of proper
treatment.
I am writing this book for an audience of both parents and profession­
als in the hope that it will speed the proper diagnosis and referral of
many children with unrecognized or improperly treated problems. The
parents will find words that are sometimes unfamiliar, and the profes­
sionals definitions for which they have no need. My apologies to all of
you. There is a glossary at the end of the text.
Much of the information in this book is not in textbooks, and in many
cases it has not been rigorously proven. This is the type of information
for which you go out of your way to find an experienced specialist. Any
physician can go to the library and read the chapter in the textbooks.
Often when parents discuss treatment options with their physicians, ref­
erence will be made to “controlled clinical trials.” It is important to un­
derstand that there are far too few children with rheumatic disease for
large-scale controlled trials of any but the simplest questions.
The absence of controlled trials is upsetting to both parents and the
many physicians in the field. However, it is impossible to fill an audito­
rium with children with rheumatic disease and agree that everyone on
the left gets treatment A and everyone on the right gets treatment B. Even
without worrying about funding, we don’t have enough children with
most of these diseases whose disease is similar enough in severity for proper
comparison. The most important questions regarding which treatment
 Introduction xiii

gives the best long-term results require five or ten years of follow-up. We
can’t wait that long to start treating your child.
When physicians, trained in the field, cannot all agree on the right
answers, how are parents going to make the proper choices? This book
reflects my experience. My goal is to give you the benefit of that experi­
ence to help you get the best outcome for your child. The care of children
with muscle, bone, and joint pain and arthritis is still more an art than a
science. As in cooking, the best results depend far more on experience,
careful monitoring, and minor adjustments than on strict adherence to
the written recipe. Not every physician will share my opinions. Not ev­
ery physician is willing to go beyond the “proven” in reaching for the
best possible outcome. The final decisions will always be yours.

A note on the case histories:

I have included many illustrative stories throughout the text. The names,
ages, and other identifying details have been changed to protect patient
confidentiality, but the examples are all real ones from my experience.
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 How to Use
This Book

The purpose of this book is to guide families and their health care pro­
viders through the process of determining and responding to whatever
is causing the children they care for to have muscle, bone, or joint pain or
arthritis. Everyone reading this book will have different needs and a different
background. I have tried to make the writing clear and the science easily
understood, with as little medical jargon as possible. However, I’ve been
caring for children with these problems for over twenty-five years. What
seems obvious to me may not be to you. If a word confuses you, look in the
glossary at the back.
If a section confuses you, take this book with you to the doctor’s office
and ask the doctor or nurse to take a minute and explain it. But don’t
surprise a busy physician with a request that takes extra time. If you
want your child more carefully evaluated or need time to ask extra ques­
tions, call ahead and ask the physician’s office to schedule a long ap­
pointment. You want your physician to be relaxed and to take time with
you and your child.
If you are the parent of a child who has been given a diagnosis, you should
begin by reading about that diagnosis to see whether it describes your child. For
parents who know their child’s diagnosis, this book has useful chapters
on medications, the meaning of laboratory test results, family issues,
getting the best care for your child, and reconstructive surgery. You will
find a lot of information that will allow you to make informed choices
and get the best possible results for your child.
If you are the parent of a child who does not have a diagnosis, or the
diagnosis does not seem correct to you, you should begin with Chapter 2,
xv
xvi How to Use This Book

“Figuring Out What’s Wrong.” It is my goal to help you think about

what the correct answer might be. Then you should approach your phy­
sician and discuss your thoughts. It is to be hoped that he or she will be
happy to discuss the situation with you, to help you to understand why
the diagnosis is correct, or to rethink the diagnosis with you. Don’t be
afraid to call your physician’s office and ask for a long appointment, as
discussed above.
This book will help you to understand why physicians ask the ques­
tions they ask, and perhaps what questions they should have asked, but
didn’t. Don’t be afraid to volunteer information that the physician didn’t ask
for. Make sure your child is getting the time and attention needed. If you
are dissatisfied after discussing your child’s care with your physician,
see Chapter 27, “Getting the Best Results for Your Child.”
If you are a health care professional who is not a pediatric rheumatologist, this
book will give you the information you need to evaluate children with muscu­
loskeletal pain before you refer them. This book will help primary care
physicians to know what tests to do and to decide whether and to which
specialist to refer the child. This book will also help nurses, primary care
physicians, and other health care providers to evaluate the advice their
patients are being given. Specialists need your help in explaining to families
what they are doing to take care of the children and why. If the situation doesn’t
make sense to you, call the specialist yourself. If you don’t get the answers
you need to make things clear to the family, there’s a problem. Knowing
when to recommend that your patient seek an additional opinion is one of
the most important services you can provide. No specialist should ever be
afraid of listening to a different viewpoint.
If you have questions, get answers. Do not sit still and do nothing.
Many of the answers can be found in this book. If you don’t find the
answers to all your questions here, this book will give you the informa­
tion you need so that you can ask the right questions of the specialist and
evaluate the answers you receive with confidence.
 Part I

MY CHILD COMPLAINS
O F PA I N
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 1
Growing Pains?

Little Jennifer S. was fourteen months old when her mother noticed
that she did not want to put her left foot firmly on the floor when she
was taken out of her crib one morning. She did not seem to walk right
for a few minutes, but an hour later she seemed fine. It did not happen
again until a couple of weeks later. After six weeks, Jennifer’s mother
noticed that it was happening more frequently. She mentioned this to
the pediatrician when Jennifer was in for her immunizations one after-
noon. The pediatrician wiggled Jennifer’s leg around, watched her
walk a few feet, and reassured Jennifer’s mother that she was fine.
When Mrs. S. called the pediatrician a month later to discuss bringing
her in, she was told it was probably just “growing pains.” By the time
Jennifer was seen in the pediatric rheumatology clinic at the age of
two years, the left knee was markedly swollen, she could not straighten
her left leg out all the way, and the muscles of her left leg were much
weaker than the right side. Jennifer had obvious arthritis. Reassured
by what the pediatrician had told her, her mother had continued to
believe Jennifer just had growing pains until Jennifer screamed when
the nurse tried to straighten her leg at her two-year-old checkup.

Things you need to know

• Growing pains never occur during the daytime.

• No matter how severe the pain at night, children with growing

pains are always fine the next morning.

• Any child with pain on waking up in the morning or during the

day requires a full medical evaluation.
3