DEAR DR. GOTT: Like the 15-year-old described in the letter you published, my 14-year-old daughter suffered with chronic abdominal pain and nausea for nearly a year. We took her to three gastroenterologists, subjected her to every test known to man, and ended up having her gallbladder removed — an unnecessary surgery, as it turned out. The doctors speculated that she had one of the many gastro disorders you mentioned, but when none was identified and none of the dozen or so drugs they tried worked, they basically gave up on us.
Finally, one wonderful doctor referred us to a specialist at Children’s Hospital in New Orleans, La. He is a pioneer and specialist in pain-associated disability syndrome, or PADS. It is essentially a disability in which the brain creates a mountain out of a molehill, making a little pain or digestive distress into something much worse.
Believe me when I tell you that I was extremely skeptical. But having tried every possible way to help my child, I decided to put my trust in this doctor, and we’ve been forever grateful. Within three months of intense cognitive-behavior therapy, my daughter was almost pain- and nausea-free, or at least able to control those symptoms when they cropped up. Now, a year later, it is rare for her to feel ill. The therapy returned not only her health but also her self-confidence.
Obviously, not every child with chronic pain has PADS, but it may be worth looking into when all else fails. There is a good body of research on it. I certainly understand the helplessness a mother feels when she can’t make her child better.
FYI: Having now been educated about PADS and spoken with my daughter’s specialist, our pediatrician recently referred another patient to him for treatment, and that child is experiencing remarkable improvement as well.
DEAR READER: Pain-associated disability syndrome is a fairly new term. It is defined as chronic pain that causes more severe restrictions than what the underlying condition would cause. As you put it, the body truly makes a mountain out of a molehill. Imagine not being able to use your arm because of a sliver in your finger. This is essentially what PADS does. A usually minor condition, such as acid reflux, suddenly causes severe pain, nausea, vomiting and an inability to eat and do other normal daily activities. Normal treatment fails, and there is no other explanation for the severity of symptoms.
I found one small analysis of 40 patients ages 7 to 21. Thirty had abdominal pain, five had regurgitation, three had nausea, and two had chest pain. All met symptom-based criteria for functional gastrointestinal disorders, such as irritable bowel syndrome or acid reflux. Thirty-nine of the people also had trouble sleeping. Most underwent mental-health evaluations to rule out eating disorders and psychosis.
It was found that all the patients had at least two or more of the following conditions: a learning disability, marital problems within the home, chronic illness in a parent, early pain experiences, unrealistic goals in a perfectionist/high-achieving child and passive or dependent coping styles. Triggering events were found in 37 of the patients. These included febrile (relating to fever) illness, school change, trauma, sexual abuse and the death of a loved one.
As you can see, this disorder is complex and varies from patient to patient. The cause isn’t known, but because it begins in preteen and early teen years, it is thought that developmental issues may play a role. Treatment involves both medical and mental-health professionals.
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