Banzel

Aidan started a new additional medication, Banzel, on Monday.  It was developed specifically for Lennox-Gastaut Epilepsy and is so new, there won't be a generic available until after the patent runs out in 2020.  We had to wait for Medicaid pre-authorization, then they didn't have it in stock, then the manufacture was out, blah blah blah.  By the time we got it, a month had passed since the prescription had been given.

When I got the prized new pills, I could see these tablets are not crushable.  My heart sunk.  Aidan's gag reflex is so strong, we've always had to use liquid, crush tablets, or use the capsules and put the powder in flavored syrup.   So I talked to him about it, coached him on how to take it, and low and behold, he just popped that thing in his mouth and swallowed it, first try.  Way to go Little Man!!!

So far, on a 1/4 of the dose, he is definitely more nauseated, but the jitteriness he experienced the first 24hrs is gone.  He's able to communicate better.  But more importantly, I'm not seeing as many seizures.
*Update: he came to me this morning (Friday) and said, "Mommy, I slept all night long!!!" The medicine is working!!!  For him to be able to use a complete expressive sentence with correct grammar, and actually have such a thing to report... that is incredible!

So now we wait, and slowly increase his dose, hoping and praying the dreaded rash doesn't show up.  He's been allergic to 3 anti-epilepsy meds already, it's definitely a huge concern.