Why I’m Here

Parenting is a whole new ball game with a toddler with an epilepsy diagnosis on medical keto.

On March 1, 2019, Lexington had what we recognized as her first seizure. On April 19, 2019, she was diagnosed with epilepsy and began AED’s (anti-epileptic drugs). On May 15, 2019 we learned that the cause of her epilepsy is a genetic mutation. Lexi has a mutation on her KCNT1 gene, as well as a mutation on her CACNA2D2 gene which has an unknown significance. On May 30, 2019 we began the therapeutic ketogenic diet to help manage her epilepsy. In a period of 77 days, Lexi had 2 ER visits, 3 inpatient stays totaling 16 days (4 in PICU), 1 ambulance ride, 3 outpatient appointments, and attempted 5 different medications (currently on 3).

More on all of that later…

Why do this?

  1. Outlet – even the sanest people need to vent sometimes…
  2. Awareness – the more you know
  3. Support – I have received overwhelmingly positive and encouraging support from the epilepsy community since our diagnosis. If I can help be a means of support to someone else on their terrifying and difficult journey, I would be honored

Things I want to talk about:

  • Our journey fighting epilepsy
  • Medical keto tips, tricks and recipes
  • Our attempt at a “normal” life, despite a very abnormal diagnosis

I hope you will join us on our journey as we take on epilepsy and fight lightning.

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