In May, Abe had an overnight EEG to rule out seizures (he still has focal and generalized discharges but they are no longer going into seizures) and Mayo Clinic diagnosed Abram with behavioral dyscontrol. To put it in simple terms, due my son's brain abnormalities, epilepsy and atrophied hippocampus, he simply cannot help his impulses. Add to that his intellectual disability and Abe spends a great deal of his life feeling out-of-control - at least this is how the psychologist recently explained why he is so "bossy" about certain things.
After our Mayo stay, we decided to try a medication called Guanfacine - a non-stimulant blood pressure medication that is prescribed off-label to treat children with ADHD. Thankfully, his self-injurious behaviors (SIBs) decreased immensely and although it will most likely never be perfect, it has been an easier couple of months. However, we've also been on summer break and out-of-school so the true test of the medication will be when Abe starts Kindergarten next month. To give you an idea of who often his SIBs were happening, on his worst day with his aide at school in the spring, he'd hit her and his peers 53 times and he'd banged his head into objects 23 times in just 3 hours. Today, he bangs his head a handful of times and hits about the same amount but it is manageable and almost always has an obvious trigger.
Children with self-injurious behaviors not only risk damaging their beautiful little faces, teeth and eyes but they can give themselves serious brain injuries by doing it - which is exactly how Abram found himself in the ER last week with an assumed subdural brain bleed and a terrified mom and grandma.
Abram had hit his head pretty hard last week while he was with his respite worker. Head banging isn't unusual by any means but he'd hit it (3) times on his swing and had done it so hard that it shook the floor above it where my mother and I were chatting. I didn't think much of it since it's a normal occurance but by that afternoon he had vomited and by the morning, he was screaming in pain, holding the back of his neck and vomited again.
We'd just by chance had an appointment at the University Hospital so we headed out on the 2.5 hour drive to go see our Developmental Pediatrician and the Psychologist who was supposed to do the official ADOS testing for a possible "official" vs "clinical" autism diagnosis. When we arrived, Abram was very much not himself. He was still screaming/crying in pain and holding his neck. I'd shared what had happened the day before and the moment our Pediatrician entered the room, she informed us that we needed to go to the ER right away as she feared he had a subdural brain bleed.