Why I Won't Hesitate to 'Fire' My Son's New Doctor

Our family just relocated due to my husband’s job. Moving is normally a tedious process to begin with, but moving with a child who has a rare disease can make matters complicated.

Last week we had an appointment with our son’s new primary care manager (PCM). My husband and I explained his illness, how the common cold can send him into status epilepticus if not treated right away, and why it was extremely important we get a referral to a neurologist as soon as possible. Because of our son’s illness, febrile infection related epilepsy syndrome (FIRES), he sees the neurologist and emergency room doctors more often than he sees his PCM. The common cold can literally lead to a life or death situation. But in order for him to even have an initial appointment with a new neurologist, we need that referral from his PCM.

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Today we called our insurance to see if the referral had gone through yet. It had been a week, and the doctor knew how important it was that our son see a neurologist soon, so of course we assumed they’d have sent the referral by now so we could schedule an appointment.

When my husband contacted our insurance though, they had no referral on file.

My husband and I discussed the situation. Up until this point, we had been extremely blessed with doctors who knew how urgent our calls were and were willing to do whatever was necessary for our son’s health. The bottom line was that a week for a referral was unacceptable, and if the doctor didn’t understand the fragility of our son’s condition, we’d have to find another PCM.

When we contacted his PCM’s office, we were kind, but let them know that if they couldn’t meet our needs as far as immediate treatment and referrals go, that we would need to look for another PCM. Half an hour later, we got a phone call back that the referral went through. While I was thankful for the referral, it indicated they had been sitting on it for a week.

We have an appointment to see another PCM next week. We explained over the phone how fragile our son’s health is, and they have promised they can handle the urgent appointments and referrals.

Our experience was a wake-up call. Unfortunately, not all doctors have the patient’s best interest at heart. And those who do may not truly understand the severity of the situation. Either way, as parents, it is so important that we advocate for our children’s health and the care they receive. This was our first experience firing a PCM, and while I don’t think it will be the last, I certainly hope it will be.