So the neurologist told us that Edda’s brain exhibits the classic EEG of Rett Syndrome. Basically her brain is awash in misfiring neurons and crossed electrical pathways. Edda has not shown the clinical signs of seizures so we are not medicating for now. She suspects that the seizures will start when Edda is 5 or 6.
It was kind of a bummer visit with this neurologist. I was not surprised with the news, I was just surprised with her bed side manner. We had been to this neurologist before and I was impressed with her style and her eagerness to help. Perhaps she was just having a bad day (a fight with her husband, an upset stomach, sick kid) , or maybe she just felt bad delivering this news because there was basically nothing for her to do about it.
I was most upset about her phrase “buying time”. That all we can do is just prolong the time that Edda has before her brain turns into mush. Hey, Edda is learning stuff every day and she’s learning to climb up stairs and she’s learning to make choices in what she eats and does. Her brain is making these connections through the massive electrical storm going on inside her head. It’s a tough thing, but she’s doing it her own way.
Anyways, life is terminal. We are all buying time until our brains turn to mush.