This is a long awaited post and more than a month overdue!! Things got busy and so much has changed in the last few months including the fact that Abram started pre-school in an integrated classroom with a one-on-one aide, he started and finished a 12 week MNRI program and began another one and we celebrated a huge milestone of being FIVE HUNDRED DAYS seizure free!!
Election Day marked this much anticipated milestone but of even more importance is the fact that in addition to the year-and-a-half of seizure freedom, Abram's Neurologist agreed to let us wean the last and final doses of his benzodiazepine from his system.
As I write this today, my son is pharmaceutical-free and seizure-free on cannabis alone. Please know that we did NOT do this on our own. We are very lucky to have a Neurologist and a Pharmacist who helped us along the way knowing when it was time to wean, how much to wean and what to be worried about. Weaning a benzo can CAUSE seizures so we were VERY careful about how we weaned this highly addictive medication and have been doing so since May of 2015. It was very slow going - only weaning .25 of a mL at a time and holding for at least two weeks before going down on the next dose. We also held the last wean for 6 months to ensure that he had no ill effects from it. So, if you are a parent hoping to be pharmaceutical-free - please do not do so unless your Neurologist is on board and if you are given a weaning schedule - do not hurry it. We were told how to wean and then we doubled the time because our son is so sensitive to things that we didn't want to trigger seizures or cause him any harm.
We finally weaned the last tiny .25mL dose (just .25mg of clonazepam) within three weeks last month and the only issue we have seen is a little bit of fussiness and NO physical seizures! This is a HUGE DEAL to my family and I can only hope that as Abram's body adjusts to having no benzos that it continues to be this way for us. Our son had words before the benzo worsened his seizures and caused him to regress so we are hopeful that he will once again be able to say "mama" or "papa".
In the 18 months since we started cannabis oil, our life as we knew it changed for the better. Our son is able to BE a little boy and he can now run, jump, ride an adaptive trike, do an 8 piece puzzle, string beads, stack blocks, he's learned about 50 signs (as he is totally non-verbal) and he's beginning to make eye-contact and engage in play with his classmates at preschool. We couldn't be more thankful!!
However, the Medical Cannabidiol Law in Iowa, the law that keeps us safe and free from arrest by allowing families like mine to posses this oil, expires on July 1st. I am hopeful that the Iowa Legislature will do the right thing this session by passing a meaningful piece of cannabis legislation that allows for access to this plant in Iowa to Iowans with a Medical Advisory Board. If you or someone you know could benefit from medical cannabis, please write to your legislators, senators and congressman and ask them for their support.
Thanks for reading this!
Hi! I'm Erin. I am a single mom, tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.