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 terrifying and treated at the ER. We believe, and his neurologist agreed, the bright sun flashing through the tree line on the interstate triggered the seizure while we were driving.
Today we saw his neurologist for prognosis & treatment. Statically speaking, tonic-clonic seizures are a typical 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 episodes will begin 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. 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-clonic seizures 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 any more seizures.
Thanks for the continued support, thoughts, and prayers for Mac and our family ❤️.
