Ariya was diagnosed officially at 3 month with bilateral SWS after starting with seizures, she had a bilateral goniotomy in her fist year of life where she was controlled with Keppra and vimpat.
Shortly after her 1st birthday she had 3 weeks of constant seizures in hospital where they tried various different medications that just didn’t work and we ended up in an induced coma in the ICU.
As they continued to study her they came up with a cocktail of vimpat, fenobarbital and fycompa, she came home but shortly after was back in. This year she has been in and out of hospital with multiple seizures, they added epidiolex and noiafren as she was having 28 seizures a day.
Since adding these they have also started on the keto diet and Ariya has been seizure free for over 2 months until she had a few more a few weeks ago but they are now back on track.
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