Monday, August 12, 2013
Aug 12, 2013
It was in the spring of 2004, Maddy was close to finishing 9th grade. She had missed a lot of school, not surprisingly, and I was sitting in the counselor's office talking about that fact. I said that her mono had really made it hard that past 15 months. The counselor, Mrs. I, said "Mono doesn't last that long." Somehow, in just dealing with life and Maddy's illness, I hadn't stopped to process what was going on. It turned out that Mrs. I's daughter had chronic fatigue, and as my brain finally kicked in, I asked for what doctor she went to. I was actually given another doctor's name. Dr. F was a pediatrician who had several patients with CFS, and Mrs. I had good things to say about him. (When Mrs. I's pediatrician was out of town, Dr. F was the back up doctor.) I came home from the middle school, got on the Internet and started looking up CFS, symptoms, etc to learn more about this condition and if it perhaps applied to Maddy.
Boy, howdy!!! It was an amazing relief to see how her symptoms matched the criteria. Of course, self diagnosis is not necessarily right. I called and made an appointment with Dr F. It was several weeks out (the whole new patient business). I had Maddy's medical records transferred to Dr. F's office so he could look at her medical history. When the appointment day came, we didn't know what to expect. Dr. F took her more recent history, asked a lot of questions, ordered every test he could to rule out any other condition, observed Maddy's mono shuffle and referred her to a neurologist for evaluation. It was obvious by the way he talked with us that he believed that CF was real. He just wanted to make sure that there was no other explanation for Maddy's symptoms. I understood and appreciated his thoroughness.
Going to the neurologist was the next step. He ordered an MRI, so a few days later we appeared bright and early at the MRI place. Maddy was the first patient of the day. When she was mostly prepped, I went into the waiting room, and settled in with a book. Not long after, the technician came out. Maddy, in reaction to the IV contrast dye, had vomited inside the MRI machine. They were done with Maddy for that day. So we left, and the poor technicians were busily scrubbing out the machine because they had more patients coming shortly. A few days later, the MRI was repeated without the dye.
So after all the test results came back, there was nothing abnormal. So as the default, Dr F diagnosed her with CFS and suddenly we had the doctor and the diagnosis in order to help Maddy. Together, Maddy and I discussed what would be most helpful to her, schedules, how teachers could best assist her in class, etc. It felt good to be able to DO something proactive instead of just going with the flow.
Where was Maddy's regular pediatrician in all of this? Well, he was not helpful at all. I really like the man, he had served our family well since my first child was born, but he had a blind spot when it came to things like mono, chronic fatigue, and a couple of other conditions that he really slipped up on. He had diagnosed and treated some bizarre conditions in my kids, so he was not a slacker. I have since had to accept that physicians are people, too, and can make mistakes. It would have been much better if he had been able to diagnose CFS and be the support that Maddy needed. It was not to be.