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Posted on 12. April 2012

My Child's Advocate

By Trudie Mitschang

Six months ago, my 13-year-old son came down with a severe case of cystic acne. Overnight, his formerly clear skin erupted in large, disfiguring lesions that caused as much damage to his self-esteem as his complexion. Over a period of eight weeks, we sought the help of several physicians. When topical medications and antibiotics failed, the dermatologist to whom we’d been referred took one look at my son and prescribed an oral medication called Accutane. “It works like magic,” he enthused. “I’ll give you the release to sign, and we’ll get him started.” My son was ecstatic - hope was on the horizon! I, on the other hand, was alarmed. Why would an acne medication require a signed waiver?

After poring over the fine print in the medical release, I learned that Accutane is a high-dose form of vitamin A linked to numerous life-threatening side effects, including suicidal thoughts and depression, liver failure, bone disease and intestinal disorders. Young adolescents like my son could risk having their growth stunted or end up with complex, lifelong health problems. They’d have good skin, though.

At 13, my son feels invincible, and he begged me to let him try this wonder drug, but my mother instincts were on red alert. I mustered up my courage and looked the doctor in the eye, explaining that this was not the right course of treatment for my child. Condescending and smug, the doctor smirked at me: “Your boy can’t make this decision for himself - it will be a shame if you make him live with this condition and don’t take my advice.”

I left the doctor’s office with angry tears in my eyes. In my heart, I was not convinced that potentially poisoning my son’s body with a high-risk drug was our only option. As his parent, it was my job to act as an advocate for him, even if it meant defying doctor’s orders. But what if I was wrong? I spent many sleepless nights pondering that question.

After several weeks of research and countless hours on the phone, I found a skin care expert who successfully used high-tech lasers to treat resistant acne. Patient side effects were minimal; mostly red, peeling skin and a few days indoors. Mind you, I had asked two of the doctors I originally consulted about using lasers to treat acne, and was bluntly told they didn’t work. Naturally, neither of those doctors actually owned a laser.

I scheduled my son’s treatments even though the clinic closest to us was 50 miles from our home. We took time off work and school. The cost was not covered by insurance and significantly depleted my savings. But the results were priceless. After the first treatment, even the most stubborn cysts on my son’s face disappeared. Two additional treatments faded the red marks and scars. He started smiling again.

What I learned from this experience is how challenging it is to act as a healthcare advocate for your child, especially when your gut steers you away from traditional medicine. Factor in a teen with his own opinion on treatment options, and the odds feel stacked against you. But I believe parents intuitively know what’s best for their children. Sometimes it’s OK to question what doctors tell us and keep pushing for the right answer. In this case, a mother’s instinct and a lot of Internet research paid off in our favor.

Have you ever felt uncomfortable about a doctor’s prognosis or treatment plan for your child? How did you handle it?

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