Good morning, @santosha
He has not tried Epidolex yet but he is a regular marijuana smoker from a dispensary we visit for him and he gets the flower or cartridges(vapes) with the THC and CBD and CBN and they help more than his seizure meds especially when he is having a really bad day. I do want him to try just the Epidolex. I wish it was legal everywhere especially for medical purposes that seem to get relief with some form of or combo of CBD or THC. I definitely appreciate you offering any help or just a person to lend an ear and maybe have some suggestions, as I have been in search of an online or in person locally support group for my son s terminal
epilepsy and how hard it has affected me mentally and physically. I can only find ones for cancer not just a terminal illness or epilepsy period. I either want to match up with someone who goes through what I do as a mom of a very sick child or someone who has been in his shoes like you. I started this support online through Mayo once a sweet EEG Tech Cindy had helped my son and told me about this Mayo support website. Do you possibly know of any support groups that may meet on video online like what I am looking for or an Epilepsy one in general? All this is personally exhausting because I know I am grieving the loss of my son that will come sooner than later but he isn't even gone yet. I do okay most days but I am struggling and a support group would really be helpful for me as a mom and caregiver to my son especially to strengthen me to get through the really tough days.