I’m sorry it’s been so long since I was last on and I appreciate you asking about my son. He has had a month of health battles ( kidney stones , numerous seizure battles as well as mental decline) but about a week ago he started having a lot better days but tonight his epilepsy has ramped up once again. We are waiting approval for referral to Mayo Clinic as well as one of the doctors to accept him for second opinion . We are still taking things one day at a time and adjust accordingly each moment but we are holding onto hope that we will find answers instead of guesses and a treatment that works to improve his condition and life . He’s still wearing a smile so we can’t give up.

We have had so many opinions over the last 21 years it’s unreal but we were actually told a referral was being done to Mayo for help but they’ve decided to talk with their colleagues instead of Mayo ( we are not happy) . We’ve given two years of hope and trust to our supposed level 4 clinic with the same regimen as our hometown neurology clinic (no specialist in our town) which in reality I guess had we known we could have just stayed with our hometown clinic that was just as useless. I’m sorry if I come across bitter but I’m just tired of false hope while fighting to find someone willing to help . I don’t believe this is rare epilepsy alone that we are in a battle with but I believe there’s something underlying that’s being passed over since focus is only on the brain.