We had a terrible year in 1985. Not only did my husband have major surgery to remove a tumor that was suspected to be an osteosarcoma (it wasn't, but we only learned it upon biopsy) but I managed to break one foot, drop knife into the other foot, and just generally mangle myself. In 1993 I'd be diagnosed with multiple sclerosis, but in 1985, I just thought I was the clumsiest person on the planet.
While all this was going on, we were going through the usual parenting issues. Peter was potty trained, but I still dressed him every day, and in early 1985, I noticed that his scrotum was swelling. I consulted my MU (mothers' underground) and we all concluded that Peter probably had an inguinal hernia. My MU consisted of family, friends, etc and some of them had managed to rise from the primordial ooze of laity and achieve medical credentials. So when I took Peter to the pediatrician that Monday, I expected the pediatrician to agree with us and handle the necessary surgical protocol.
Inguinal hernias are not uncommon with premature males. And, of course, his pediatrician knew that Peter had been a preemie. But upon examination, the doctor peered at me with that haughty look all parents have learned to dread and pronounced Peter's anomaly as a hydrocele.
He told me that the fluid would be reabsorbed and that Peter would soon be within normal limits.
I wasn't impressed. I was sure it was a hernia. Peter hadn't complained of pain yet, but I wanted a second opinion. An inguinal hernia, if it strangulates, is extremely painful, and I wanted to keep Peter from that, if possible. Complicating the issue, we had Kaiser, an HMO in the Portland Oregon area, and I was limited to who I could get a second opinion from. I didn't want to start a brouhaha, argue with physicians, etc. I just wanted the problem solved.
I solved it by calling an adjunct of my MU and she recommended taking Peter outside Kaiser. Although we would have to pay for the exam ourselves, we would reassure ourselves AND have a second opinion with a physician who wasn't a daily colleague of the pediatrician who misdiagnosed Pete.
Off we went to the second doc, and he immediately reassured me that, yes, we were looking at an inguinal hernia and that surgery was in order. I told him my concerns, and together we cooked up a story that we could tell the Kaiser physician. "The second opinion was a family friend who also was a surgeon who had looked at Peter's scrotum, at our request, and thought that his pediatrician should take a second look."
It worked. Peter was referred to a surgeon who scheduled him for surgery that week. We paid the second opinion his $50.00 and considered ourselves money ahead in the big picture.
And we moved on.
April 1985 rolled around and Roger came down with a nasty virus. So nasty, his temp was averaging 104, and after 48 hours, John and I were sure there was something more at work than a routine infection. On a sunny Wednesday morning, we headed off to the pediatrician's office.
This time, the pediatrician was out and Roger was transferred to another office. There, things were so busy that he was seen, not by an MD, but by a PA (physician's assistant). The PA did his "There, there, mommy, it's really nothing" and sent us home.
I was blistering.
On the way home, Roger fussed in the back seat. Driving down Division street, I looked at him in the rear view mirror and realized that he was having a grand mal seizure.
At one point in my brilliant pre-mommy career, I had worked for a child neurologist and knew to time the seizure. The seizure was protracted (status epilepticus) and we took a detour to the local fire department. They rapidly assessed Roger, organized emergency medical transport, and rushed him to the nearest hospital. In the ER, a lumbar puncture was done and Roger was given anti-convulsants. Eventually, he stopped seizing, and we were transferred, again by ambulance, to Kaiser where Roger spent the next four days fighting encephalitis and I spent the next four days, sleeping on the hospital floor by his crib.
I should have been a tougher mother that April, and insisted that 1) my son see an MD and 2) nobody should pander to a mother. Instead, I took the rebuff and headed into the great abyss of anger. I still wake up nights, sweating and panicked.
If I were to write a Mommy Manifesto, one of my most important tenets would be NOBODY talks down to a Mother, and second opinions are always accommodated and immediate. The primary caretaker's opinion (usually the mom, but not always!) should weigh in as heavily as the overworked pediatrician's.
I didn't write this to scare you, but to let you know that you are entitled to respect and due diligence on the part of the medical community. I became a much better, sharper, direct, terse, demanding parent in the pediatrician's office. I think it worked partially because all were terrified of me. But it also worked because when you expect respect, chances are, you'll get it.
So go in to the pediatrician's office with head held high, expectations clear, and an attitude that declares "I'm your partner in this child's care."
Then, remember to respect the doctor as well.