A Parent's Refusal. A Child's Pain

“I don’t feel comfortable with the medication you prescribed. I want to see a specialist!” The man was adamant on the phone, almost angry. I was stunned. Prednisone is a very common and, in the dose prescribed, incredibly safe medication. I had prescribed it hundreds of times in the past without any complications and was surprised he was so worried about it. Of greater concern was the fact that the medication had been prescribed two days earlier to treat debilitating pain from an inflammatory arthritis and that by not giving it to their child the parents had allowed him to suffer in agonizing pain. They were willing for him to endure days of needless suffering because of something they had read on the internet! How could this be?

The child had not been feeling well for a while and had gone to the local emergency room. The ER doctor ordered a number of tests including a chest x-ray and a urinalysis. Based on the results he made the diagnosis of both pneumonia and a bladder infection (a rather uncommon combination) and prescribed antibiotics. The family came to my office for follow up a few days later and saw my physician's assistant.

They told the PA  that after 5 doses of the medication a rash had developed and so they made the decision on their own to discontinue the medication. They were certain it was an allergy but in actuality the diagnosis was unclear. Nevertheless, there were no signs of infection in the urine or on physical exam, the rash seemed to be fading and the child seemed to be feeling well so the PA made the wise decision to not start any new medication until some of the tests were repeated.

I saw the little boy 5 days later. The rash was still fading, but a new symptom, severe joint pain, particularly in the knees, had developed. I ran through a list of possible causes of such pain and felt that there was likely to be an inflammatory process as the cause. The diagnosis of HSP (henoch-schonlein-purpura) rose to the top of the list. It is typically a harmless immune condition that resolves on its own but it can cause kidney issues, which could explain why the urine was abnormal in the ER. I ordered more tests. We discussed treating the joint pain but decided to wait as it had eased somewhat that morning.

The results came back the following day and included a normal chest x-ray, normal blood work, normal kidney tests and a normal urinalysis. The only abnormality was an elevated marker for inflammation. I called the parents to review the results and learned that the joint pain was again severe. Confident in the diagnosis of HSP I prescribed prednisone, the one medication that I was certain would quickly relieve her pain.

Late the next day the surprisingly antagonistic phone call came. As I spoke with the father on the phone I quickly realized the problem. The family did not trust doctors. They had been very reluctant to immunize, had avoided check-ups and had only come in when their child was ill. It was clear to me the problem was not that they were not comfortable with the specific treatment I had recommended, the problem was that they did not trust me to know what I was doing. I struggled with how to respond.

 I shared with them that the treatment was safe and effective and that there was no specific specialist for this condition. Further, the specialists that could be consulted would be very difficult to get in to see on short notice. I might be able to pull strings if their son did not respond to the prednisone, as that would make the diagnosis more unclear, but they were refusing to give it. The father repeated the concern that they were not comfortable with the prednisone. In their opinion it was not safe.

With great sadness I told them that there really wasn’t much more I could do. If they trusted their feelings and emotions more than my medical judgment, how could I treat their child? I had made what I felt was an accurate diagnosis and prescribed safe treatment. If they did not believe me then it was up to them to find a physician they could believe. I wished them well and encouraged them to find care elsewhere, letting them know that if they changed their minds and wanted to remain patients they would be welcome.

 I have not heard from them since.

 Families such as these are always hard. Somewhere along the line they become convinced that doctors cannot be trusted, that we casually make recommendations and prescribe medications that are harmful. They are convinced that advocating for children means defending them from doctors instead of working with us to help their child. Every treatment and every immunization becomes a battleground and even the most routine and mundane recommendations are called into question. In the end, the one who pays the price is the one they claim to defend, their innocent child. How sad.

-          Bart