I have something HUGE to share. So big that I've been sitting on it... wondering if I should knock on wood for fear of saying it aloud may make it just disappear again.
To be honest, the entire last year has been a huge struggle. Something happened last March that started a serious chain of massive amounts of self-injurious behaviors in Abram that it felt like everything just got out-of-control. We increased his CBD:THC ratio and it helped immensely but with Iowa's current law we are unable to obtain the proper ratios we need to help him and/or are unable to afford the amount we'd need to purchase in order to do so.
After he was struggling immensely at school, we went back to mayo where he was diagnosed with "behavioral dyscontrol" which is common in children with brain injuries. Abram has cerebellar cortical dysplasia, which is something he was born with and is considered a brain injury.
With the EEG we learned that Abram's brain was still having generalized discharges (affecting both sides of the brain) and then they reported that he also had two new focal points (a particular spot in the brain where a seizure can start) which he didn't have previously. In the Epilepsy world - discharges can turn into seizures. So the fact that his brain was changing was alarming and his Neurologist told me that it was "just a matter of time before something BIG happened".
People often say "So, the Cannabis didn't work?" Yes. IT DID and it IS. Cannabis has prevented those seizures from coming out as physical seizures and for that we are extremely grateful. Abram has abnormalities in his brain that are known to be medicine resistant aka "intractable".
The cannabis is doing something so huge for him that we have not seen any physical seizures in nearly three-and-a-half years! However, his EEG was bad enough that our Neurologist suggest that we add in another medication - to which I was hesitant to do. Pharmaceuticals really did a lot of damage to Abram and traumatized me as a parent - especially when my son regressed due to the fact that right medication was not chosen properly the first time.
In November, after seeing how much my son struggles in elementary school with . his peers, his father and I decided it was time to add in a second medication along with the cannabis to see if it would help get his self injurious behaviors under control and allow him to learn.
It's a medicine that takes 11 weeks to ramp up to his specific dose used for both for mood stabilization and for seizures. Right now, we are only on week 4 of 11 of this new medicine (Lamotrigine) but we have seen improvements in his behavior, his attention span and his self-injurious behaviors. His therapists have reported that he can sit for a little longer (currently his attention span is literally under 2 minutes and cognitively he is about 2 years & 8 months old).
Many people would shun me for adding in a pharmaceutical (including me - just 12 months ago) but the realization that my son slamming his face into the concrete, walls and tables wasn't being helped by the cannabis oil that Iowa's law limits to just 3% THC, I had to do something else in addition to what he's already taking. If Iowa's law changes to where I can help my child with cannabis alone - I will reconsider my options but for now my biggest priority is to keep my sweet boy's face and teeth the way it was intended.
I digress... to the point of this whole long winded blog entry:
Abram is now engaging in imaginative play!! He is 6 and the other day he took me to his kitchen, took out a pan, put two food items into it, turned on the stove, stirred it, took two plates out, put the food on each plate and served it to me with a fork so that I could pretend to eat with him. THIS IS HUGE. I did not give him instructions on what to do. He did this all on his own. I was so in love with that piece of corn on that tiny plastic plate that I cried.
This is a huge developmental milestone.
Second - Abe loves this show on YouTube called WILL IT BUST!? (By Garage Door Fail). For Christmas he got a Ghostbusters Firehouse Garage and he actually put a cracker under the door, pretended to put the garage door down on it and when I asked "are you playing "will it bust?" he said "yeah!!". So.. just like the guy in the video... I yelled "WILL IT BUST?!" and he smashed the cracker with the door and signed "ouch". It was the best thing ever!
He's pretending. He's mimicking us. It's the best thing ever.
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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