Electrical storm

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.

5 thoughts on “Electrical storm”

  1. If it helps any, my brain already is mush. I called Joshua, Jojo (the dogs name) twice today. I’m sorry the Dr. wasn’t the best with the bedside manner. It’s really generous of you to be so good in giving them the benefit of the doubt i.e. sick kid, fight with husband. I think that Dr.’s can be great with the medical thing it is the human part they usually need help with in their lives. Just keep teaching Edda things and stay on the positive side as much as you can.
    Love, Sheila

  2. This morning, I called Jeremy to ask him about the visit and what did doctor say. From him, I could tell it wasn’t going well, not the news but the manner I suspected.

    Well, I am pretty sure Edda is learning everyday. I have all the confident that she will do her best and with all the help she needs.

  3. Most time, Dr is right. But sometime, they are not right, especially with some one’s brain. Edda is so lovely and brave. She is leaning things every day. So long as we do our best and miraculs do happen.

    Love you all.

  4. Doris,

    I am sorry Edda’s neurologist made such a cruel comment. What the doctor said just isn’t true. A typical Rett EEG does not doom Edda to a “mushy brain,” and that comment was neither kind nor necessary.

    Please hang on to hope. There is MUCH to hope for; the fact that she continues to learn is a wonderful thing. She will continue to learn as long as she is surrounded by love and opportunity.

    When I posted you a note the other day as an “anonymous” Rett mother with a 10 year old daughter (from Maple Valley), I realize I forgot to offer you any way to get in touch if you would like. I’ll sign off with my daugter’s website; I think you can connect to our email at that site. Rebecca C. can also give your our email directly. If ever you need a shoulder of another Rett mom who has been down this road, I am here. Our girls are fantastic–brave, inspiring, insightful, sometimes frustratingly typical, and with truly beautiful spirits. Please ignore what the doctor has said about mush. It can only be based on outdated information from days when our girls didn’t get the opportunities they deserve to develop. Edda lives in a time of hope and promise; the fact that she is surrounded by loving family underscores that as as well.

    mom to Angela, age 10,
    Maple Valley, WA USA

  5. Rose-marie,

    Thanks very much for your supports and encourangements. We all will do the best for Edda. We also wish you and Angela doing well.

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