The Journey to Find the Cause of the Pain

Brought to you by Creative Healing for Youth in Pain’s Parenting Blog

April 26th, 2021

By: Lonnie Zeltzer, MD

The mother of a patient recently emailed the following:

Now that she’s finally beginning to thrive, and becoming more tolerant, she’s finally open and determined to heal again.

After over two years going to a million appointments and a million tests, she eventually stopped getting her hopes up because no one seemed to want to listen to how what they were suggesting was impacting another part of her body negatively. They would almost always cut her off and say they were just interested in hearing about “X” body part.

The system seems broken in so many ways, especially when you are experiencing whole body issues.

The Journey to Find the Cause of the Pain

When your child has pain, understandably you want to know why so that it can be “fixed.” So, you start the journey for finding the “cause” of the pain. Typically, you take your child to a specialist for the body part that hurts (e.g., gastroenterologist, neurologist, orthopedist, rheumatologist, etc.).

You also may take your child to the emergency department multiple times because of severe pain. After some tests and pain medication, you’re told the tests were all normal and to follow up with your child’s doctor.

Then, you take your child to more and more doctors, who do more and more tests. They try out different medicines — which don’t help your child feel better.

You begin to feel that you are now in charge of deciding which doctor to go to or listen to, or which medications your child should take — especially when each of the doctors tells you different things. To whom do you listen? Since your child isn’t better, should you go to more doctors?

You go on the web and see testimonials and advertisements from doctors or programs that promise a cure for your child’s condition. You spend money for treatments that are not covered by insurance. You try to do your best for your child.

By this time, your child is spending more time alone in his/her/their room, not doing school work, and no longer connecting with friends. Your child appears to be more sad, angry, frustrated, and anxious.

Your child tells you that pain and fatigue are keeping him/her/them from engaging in any activity inside or outside the house. Your child may be falling behind in school, not sleeping, and feeling like nothing will change.

Some doctors have told you, “It is stress,” and that your child should see a psychiatrist. This gives your child the message that the pain is not “real” and made up for attention or to get out of school. Your child thinks, “The doctors think I am crazy.” This is the beginning of a downward spiral into feelings of helplessness, for your child and for you as a parent. Not a great feeling!

So, what is the answer?

The Biopsychosocial Model of Chronic Pain

You need to find a doctor who will look at all the factors contributing to the pain. This is why medication alone rarely “fixes” chronic pain. Unless the whole multilayered picture is laid out, each of the contributors to the pain can’t be addressed. This is called the “biopsychosocial model of chronic pain” and has been found to be the only one that truly works.

In fact, the original cause of the pain may be long gone (e.g., a viral gastroenteritis), but it was enough to disrupt the brain-gut electrical system. When that happens, the nerves keep sending increased pain signals that cause stomach pain with eating. Increased motor signals cause diarrhea and/or constipation, as well as nausea and, in some cases, vomiting. This may lead to food avoidance and weight loss (sometimes serious weight loss), as well as fatigue, poor sleep, and no energy to do anything physical, social, or academic.

Your doctor must listen to you and your child, and evaluate the different symptoms — both physical findings and what your child describes. Only then can the doctor put a picture together that accounts for your child’s developmental and medical history, past traumas and pain experiences, as well as the many factors that are keeping the pain going and adding to it: lack of sleep, no exercise, poor diet, isolation, difficulty concentrating (which impacts schoolwork), fatigue, sadness, anxiety, etc.

Unfortunately, most primary care physicians do not have the time needed for such an in-depth evaluation. They refer your child to the subspecialist most involved with the affected body part. Therein may start the journey of doctors, tests, medications, out-of-pocket expenses for scientifically unproven treatments, and so on. Clearly not all pain goes this route, but often it does.

At Whole Child LA pain clinic (www.wholechildla.com), we have the luxury of spending as much time as needed to “get the full story.” There are other integrated pediatric pain programs that also do this — typically at academic medical centers or children’s hospitals — but not enough to serve all the children that suffer from chronic pain.

I will continue to provide the “doctor’s angle” for parenting the child with chronic pain in this Parenting Blog series brought to you by CHYP. Any questions or topics you want covered can be addressed to me through Lonnie@mychyp.org.