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I posted this picture a few weeks ago on Facebook – what felt like a lazy Sunday.  This was at 9am.  She fell asleep right after this for about two and a half hours.

First SeizureSomewhere in the middle of that nap I realized what it really was.  Her head had fallen forward in her stroller and she was non-responsive.  When she came around, she was so tired, that all she wanted to do was sleep.  I took her to this hammock and she passed out.

We had hoped we’d be able to avoid this symptom of Rett.  We were hoping if they haven’t started already, hopefully they won’t start until puberty, if at all.  But, alas, Maggie had, what we believe to be her first seizure.  We can’t be 100% sure because there was no EEG during it, but from everything I had been reading, that’s exactly what it was.

It wasn’t as scary as we thought it was going to be.  I thought it would be intensely emotional, too.  But it wasn’t.  I thought I would freak out and not know what to do.

Instead, I just went about the day as if nothing had happened.  It was a calm seizure and the result was a calm Maggie as well.  I mean, sure, I’m sad for her.  I’m sad that she has to deal with one more shitty thing.  But it wasn’t scary.  She didn’t shake or scream or cry.

Most surprising?  Neither did I.


4 thoughts on “Maggie’s First Seizure”

  1. How awful for you and Jenny and Maggie. At least Maggie is unaware of the “goings on”, luckily..
    You guys are in our thoughts lots, and we hope and pray the seizures don’t get any worse.
    Love, Gloria and Mel

  2. Gloria and Mel, she does understand. We had to explain to her what happened. We have had to explain to her that she has something called Rett Syndrome. She knows. Sometimes that makes it harder. Of course we have to explain Rett Syndrome and seizures in terms that a four year old would understand. Not an easy task.

  3. I have a customer with a daughter with Retts and I started doing some research and came accross your VLOG and this webite with your note about your daughter’s first seizure.

    I thought I would share with you some of the interesting videos I found for my customer and maybe these ideas can help you too –

    For seizures, I’ve seen numerous videos and tv news reports on kids with siezures being helped with medicinal cannabis

    Here are some links below.

    Here are a few of the links I have put together for my friend/customer… I am sharing with you. Would love your feedback, feel free to email me anytime.

    PS I am NOT a doctor. I’m a party planner with a passion for healing.








    B12 – and Rett Syndrome

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