Wednesday, August 29, 2012

The initial brush off

I wrote about L's first seizure here.    I'd wanted to rush straight to the hospital immediately afterward, but we called and the nurse told us wasn't necessary - we could follow up during the next few days.

Could you accuse this darling of throwing a tantrum?
Two days later I was describing the scene for the doctor.  Even though I was rattled, it was easy.  Every detail was seared into my memory.  After listening impatiently for about 2 minutes, she told me patronizingly, "This is what we call a 'temper tantrum' and is very normal among toddlers.   I could have had a temper tantrum right there in that office.  I told her I knew what a temper tantrum was, and this was not a tantrum.  It was a seizure.  With tears I re-explained every detail.  His eyes unfocusing, the robotic movement, his jaw, his arched back, his collapse afterward.   I told how he had gone without oxygen for a long time before finally going into the seizure, because of the strange way he had been crying.  At the time, I didn't even think to point out that L was only 10 months old. If she thought he was throwing a tantrum already at that age, she must have considered him very precocious.

Her next words were worse. "The thing is - how would you even know what a seizure is?  You are not a medical professional."  I'm actually grateful for my stunned silence.  Who knows what I might have said?  How do you even answer that?  When I finally got my voice back, I informed the doctor that I knew plenty about seizures since my niece had suffered non-epileptic seizures for years.    The truth is, I'd never seen one of her seizures.  But she didn't need to know that.  Who could mistake a seizure when they saw one?  It's asinine.

Finally she relented that L may have had "a seizure"  (she always referred to it as "a seizure," just to make sure I knew she didn't believe me) but that there was no need for any follow up.  She assured me that a fluke seizure is nothing, and that she'd be willing to order any tests that we wanted in order to appease us, but that "the epilepsy test is reliable only 40% of the time, so even if we did test, there would be nothing we could do with the information."

Obviously, we didn't order any tests.  She said to come back if he ever had another 'seizure'.  Two seizures without known triggers would signal epilepsy.  She would even encourage testing at that point.  We went home and waited.  He had near-misses constantly, and I feared every one would end up as a seizure.  About a month later, he had his second seizure.  But that didn't get us any closer to a diagnosis.

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