I think it’s safe to say that everyone is happy that 2020 is finally over. With COVID-19, a tumultuous election season and so much going on in the world, 2021 has been warmly welcomed. 2020 was uneventful for Greyson and his medical concerns, up until the very end of November, when he began to have issues with his sleep again. He has been off of seizure medications for a year and strictly only on Medical Marijuana to manage his epilepsy and seizure episodes.
We moved Greyson into the master bedroom right around October due to concerns with his seizure activity at night. I wanted to monitor him more closely and because I don’t sleep very heavily (like Derek does), I thought it would be beneficial for him to be close if something was to happen during his sleep. His medicine was helping with some of the sleep concerns- helped get him to bed sooner, but nothing has helped keep him asleep….ever. He began waking up in the middle of the night in November, popping up from a deep sleep, only to begin screaming bloody murder and thrash his body all around- all while still appearing to be asleep. When he was having episodes like this in the past, we were sent for his first EEG and that’s when the seizures were discovered during his sleep. When he began having these issues, I started to assume that we were going to have to go on seizure medications again.
We discontinued all of Greyson’s medications back in early 2020, so he could have a fresh start and for us to try something more natural with him (medical marijuana oils). For about six months, things were going very well and we (and the school staff) saw a huge improvement in him from the time he was on the anti-consultants. Among the 7 or 8 different meds we tried for his seizures previously, all made him either more aggressive, excessively sleepy/drowsy, or caused him to have serious self-injurious behaviors. Weening him off of the meds was easy and it was almost instantly that we saw the benefits of no medications. When he started showing issues again with his epilepsy, the thought of pumping him with drugs again, was not appealing to us. As time has gone by, we realize that the medicine will do less harm to him than a seizure would. Afterall, it really only takes 1 large seizure to cause serious damage or death.
Right after Christmas, I contacted the neurologist to address my concerns with Greyson and a new EEG was ordered. His most recent EEG was a 24-hour EEG in Philadelphia in August 2019, which showed abnormal sharp waves in his left parietal lobe. This wasn’t much of a difference from his previous 24-hour EEG in the Spring of 2019, but did show more evidence of ESES, which is a condition where a person’s brain doesn’t rest and has seizure-like activity constantly through sleep. Not sure if I have talked about ESES before in previous posts, but here is the actual medical definition of it:
Electrical status epilepticus in sleep (ESES) is a childhood-onset epileptic encephalopathy characterized by epilepsy, cognitive regression, and marked activation of epileptiform activity during non-rapid eye movement (NREM) sleep to produce an electroencephalography (EEG) pattern of near-continuous spike-wave discharges.
I had also scheduled an appointment for Grey to follow up with the local Neurologist, to address the concerns and to review the EEG. Luckily, this appointment was scheduled for today, after G had a Tonic seizure on Thursday last week, right after the EEG. This was the first Tonic seizure he has had, unresponsive for about 30-40 seconds and his muscles were extremely tight and he was unable to move, though he did not have any convulsions. Post seizure, he slept for about three hours, which is not like him at all. Seems like good timing for this to happen, as always, since he was seeing the Neurologist this week.
Greyson hasn’t been sleeping well, so naturally no one in the Martin house is sleeping well, including Roslynn and Mr. Duke the dog. G was up around 2 am and hung out with me for about two hours, watching Coco and jumping all over the bed. Once I couldn’t keep my eyes open any longer, I sent him to sleep with Derek and I finally was about to get 3 hours of sleep. Prying him out of his sleep to then go to the Neurologist at 10 am was a fun task. We were all pretty miserable and were in desperate need of a nap. Greyson’s schedule was already thrown off for the morning, so when he realized he wasn’t going to school, he was extra grumpy.
CHOP has strict requirements for appointments due to COVID-19, so only Derek could take him to the appointment today, I was phoned in for it. The visit lasted a little over 45 minutes and it was concluded that Greyson will need to be on seizure medications to avoid a possible SUDEP case.
“For some people living with epilepsy, the risk of Sudden Unexpected Death in Epilepsy (SUDEP) is an important concern. SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.”
We addressed our concerns about previous side effects with seizure meds and we are willing to give them a chance again. We will begin G on Lamictal shortly, which is proven to show less side effects, especially drowsiness and has even reduced aggressive behaviors in Autistic patients. Here’s to hoping that we can get this under control and get Grey back to a good baseline. We are planning on keeping the medical marijuana too, since it has shown to help his behaviors and self-injury. The doctor also recommended that we do a repeat 24-hour EEG for Greyson and an MRI in Philly. The MRI is to check for any progression in his Periventricular Leukomalacia and any abnormalities that could be contributing to the seizures and migraines.
So 2020 may be gone and in the past, but 2021 begins to show past challenges that we are hoping to tackle head on. Cheers to 2021, to health, to no more COVID and hopefully to no more seizures. Maybe 2021 will bring some sleep, too. LOL!