Category Archives: Dravet Syndrome

Sinking

Sarah, you’re our little Screamapillar. We’ve spent the last 9 years trying to keep you alive despite you spending all of your energy on the opposite.

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Rambling – Heartbreaking Decisions

Sarah is becoming more and more dangerous as she grows. A 2 year old in a 10 year old’s body has the power to fight back and hurt herself and others. Today I put her in a timeout in her … Continue reading

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Stream of Consciousness

Little star, you burn so weakly, an ember, flickering. The moon pulls on me, in my sleep, I start shaking, I can’t breath, my world starts shaking, I gasp for air, I fill with dread, I scream, and I gasp, … Continue reading

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Little Black Moon – The Lunar Cycle’s Connection to Seizures

I’ve got my own set of beefs with the moon and its cycle. When it’s full, I can’t sleep, whether I’m aware of the moon’s phase or not, rest assured, if it’s full; I’m not resting at all. I seem … Continue reading

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Is it This Simple?

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Life As We Know It

Another couple weeks of seizures, two at home, one on a bus and one at school.

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Nowhere Fast

My heart sinks when the school calls. They only call for one reason. This time she was on her bike. She doesn’t remember the ride. She doesn’t remember the fall. Minimum day for Sarah!

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Comfortably Numb

Another bad seizure tonight. Blue lips violent gasping. Her sisters were with her. Screaming for help. Thank god we caught her. She was falling fast. She was sad when she came back. I think she is becoming aware. I think … Continue reading

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A Slippery Slope For Sarah

We were able to maintain 100% seizure control after reducing Sarah’s meds by 50% by using the Ketogenic diet. We maintained this new regimen for about six months. Then we got a new neurologist. The new neuro is pushing us … Continue reading

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A Time For Sarah

The ketogenic diet is going very well. We have been able to reduce the amount of medication Sarah takes by about 30% over 4 months, and our seizure control has remained good. We will continue to experiment over time. Maybe … Continue reading

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