Hello, Everyone. I haven't posted in a while and haven't been very consistent with my posts lately and for that I apologize. The year 2018 for us has been a difficult one for Abram as his self-injurious and aggressive behaviors increased at school and then we spent hours meeting with different specialists to get to the root cause of the flip/major increase in his behavior. We sought help from Neurologists, Behavioral Therapists, Developmental Pediatricians, Autism Specialists and everything else in-between.
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. She walked us right to the ER, explained to the staff that he has self-injurious behaviors and that he'd need a CT scan, immediately.
I made the mistake of googling a subdural brain bleed while we waited. BIG MISTAKE. But I digress, the getting of the CT scan in and of itself was traumatizing for poor Abe. He's been through so much medically that the sight of medical equipment sends him into flight or fight mode which makes things even more difficult. Because he is medically traumatized, he is literally unable to lay on a CT scan like a neurotypical child may be able to do.
Instead, he'd need to be sedated and thus we started our scary journey of watching him be drugged with benzodiazepines to which he had zero reaction and then ketamine. He'd gotten so much medicine that I had to sign a waiver that it was possible for him to stop breathing and they had a crash team in the room to help him with oxygen, heart monitors and the possibility of intubation. It was terrifying.
Having a team of 5+ doctors in the ER circling your child - just waiting for it to go badly is absolutely terrifying and one of the scarier experiences I've had so far. Much to the shock of the ER team - Abram literally never went to sleep. The doctor and nurses eyes kept getting bigger and bigger as Abram kept moving and responding to stimuli. At some point, he was at least out-of-it enough to be able to be strapped down to the CT scanner with large velcro straps and I had to put on a lead vest so that I myself could hold his head still while it was in the machine.
Shortly after that, he began hallucinating so we had to wait a long while for the medication to wear off before he was released from the ER. Thankfully, this time his CT scan came back normal (aside from his actual brain abnormalities) and we were able to leave and go back home. However, the reality of how bad head banging and self-injurious behavior rang true. It was a scary situation but thankfully it wasn't more severe and our son got to leave the hospital without proof of an additional brain injury (aside from the one he was born with).
We got lucky and appreciated everyone's kind words and love when it was happening.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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