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One of the biggest changes we’ve noticed since taking Milann off seizure medication has been “Rett episodes.” We recently learned that some Rett episodes can involve seizure activity, but most of hers do not. She still has them, and some days are harder than others, but most days they are much milder than what we were used to seeing. There was a time when she was having 10 episodes a day. Now, some days she may only have 2 or 3. Some days she may still have 8, but they’re often much less intense
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This is what a nocturnal seizure can look like. Nocturnal seizures are seizures that occur during sleep and can include abnormal movements (like this one), jerking or thrashing around, classic tonic clonic type seizure, vocalizations (screaming, shouting, or moaning), and behavioral/sensory issues like sudden awakening, confusion or disorientation upon awakening, unusual sensations like weird smells, tastes, or fear, and appearing in a dream-like state, staring off or having impaired awareness.
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