Mac Medical Update:
In November, we were optimistic that Mac’s EEG only showed one brief absence seizure trigger by photosensitive (flashing) lights. Unfortunately, on our way back from Louisiana (Dec 30th), Mac had tonic-clonic (grand mal) seizure. It was very scary and he was treated at the ER. We believe, and his neurologist agreed, it was likely triggered by the bright sun flashing through the tree line on the interstate while we were driving.
Today we saw his neurologist for a prognosis & treatment. Statically speaking, tonic clonic seizures are a common phase of generalized epilepsy once a person with absence seizures reaches puberty. Mac started puberty in January 2019. At this time, you will slowly see a decrease in absence seizures and tonic clonic seizures will start to manifest.
His neurologist reassured us tonic clonic seizures were treatable with medication and we had lots of options to choose from to find the right cocktail for Mac. He was hopeful that Mac only had one tonic clonic since the 30th. Also, that we immediately took measures (blue tinted glasses inside and dark sunglasses outside) to eliminate triggers and prevention.
Mac will be starting Zonegran today for the tonic clonics and maintaining all his other medications at present levels. We are continuing the Charlotte’s Web CBD oil because the benefits outweigh the cost. Hopefully one day the FDA will change the required diagnosis for Epidiolex and we can finally get that prescription filled 🤷🏻♀️.
In a nutshell, Mac is in the next phase of generalized epilepsy and our mission is to medicate, treat and take all measures to prevent anymore seizures.
Thanks for the continued support, thoughts and prayers for Mac and our family ❤️.