Elvis has been diagnosed already.
He is epileptic with cluster seizures with what can only be determined after many many many (and expensive) tests over what has now been 2 years about, genetic epilepsy. I forget the word they used meaning it has no cause other than neurological itself.
After undetermined but exhausting research it appears Elvis' line was known to have both LS and neurological issues in it.
Elvis has only been on pheno just over a month now our alternative treatment wasn't working. We just upped the dosage of pheno in hope to control seizures which have increased in frequency over time as well. They started out about every 4 months to up to every two months once only weeks apart but going from 3-5 to a couple days of spaced out seizures (cluster seizures).
Elvis is not currently on any liver supplements but is being monitored for liver function via blood tests.
I'd definitely consider a liver supplement but we also want to change nothing but his new seizure meds once he stable for 90 days to make sure everything is uninterrupted and can be properly monitored.
Thank you everyone for your kind words.
Personally for me this has been very challenging I had to get it through my own head that epilepsy is forever there is no magic pill to make sure he never has another seizure and I have been very frustrated going through this...very angry and sad because I've been working through the "it's just not fair" train of thought. |