I’ve been meaning to update everyone on Samson but it has just been so busy.
The short answer is that Samson is doing well but is a bit of a medical mystery at this point.
He had an overnight, 24+ hour EEG done a few weeks ago and it showed no evidence of either seizures or “interictal spikes” – which were little spikes of irregular brain activity that happen in between seizures. Considering that he was having almost continual seizures when he was first admitted around Thanksgiving, this is GREAT news.
He is still taking the antiseizure medication. It is at a very low dose (really on the border of what they think is therapeutic). He’ll likely have to take it for at least a year, possibly two, and be free of seizures before he can be taken off.
All of his autoimmune encephalitis antibody tests came back normal and his data has now been sent into a clinical trial, where they create a bacterial particle that contains proteins from every single coding region of the human genome on its outer wall, and then they test his cerebrospinal fluid to see if anything reacts to it. It’s experimental and will likely not yield any answers – it’s mostly for research – but there’s a small chance his brain was being attacked by an antibody no one had ever identified before.
His genetic epilepsy tests were all negative, which is also great, as those syndromes are nasty.
At this point, doctors are still going on the assumption that he had some kind of autoimmune attack on his brain and that he does not have idiopathic epilepsy.
However, he is still not absolutely 100 percent. He no longer falls asleep at 10am, complains of headaches or talks more slowly.
He gets wilder during the day and is a little more disruptive. He has been having trouble with aggression, mainly against his older brother.
His hand shakes when he tries to write. He still writes letters better than most preschoolers, but it used to be effortless and for now it’s not.
He has more trouble focusing on difficult tasks than he used to. It’s subtle though; his daycare teachers don’t notice it but I do at tasks like reading music or playing piano.
He does some weird things with his mouth – he is apt to put LEGOs in his mouth and his mouth often moves when he’s playing. I’m not sure what this is but it’s not seizure activity for sure, so that’s good. It’s possible it’s a kind of regression (just from being in the hospital for a week) or it could also perhaps be some kind of relic of a brain injury to the area of the brain that was seizing. I think in either case this should probably gradually go away.
However, if you were to meet him you would not know what a harrowing experience he just went through. He is definitely a tough and resilient kid.
When I asked the doctor about these symptoms they say they are unlikely to be due to the medication. I’m not 100 percent convinced but I know that there are often side effects in individuals that might not be detectable in a population cohort. On the other hand, his brain was also being attacked by something, so it’s possible these are all signs of the brain injury. I am hopeful that they will heal or go away in 3 months. If not, the doctor says to seek occupational therapy for the shaky hand.
The one tough thing is that his blood sugar numbers are just much higher than they were. On the plus side, he’s spent 0% of his time critically low over the past two weeks and 3% of his time below 70. The nights have been GREAT – just before he was admitted a new doctor who is known as the basal whisperer tweaked his nighttime settings and they seem to be perfect.
But overall his numbers are just not great. His average blood sugar is 146 mg/DL, which is about 25 points higher than it usually is. I’m just not sure at this point what to change. I didn’t want to change his basal settings as he was on school break and just loafing around the house; I figured that was a temporary status not worthy of basal changes. He’s on Loop and I just don’t think it works as well as openAPS for combatting highs. The super-microbolus feature just works much better for him than high temp basals. I’m not sure if the medicine he’s on is making him more resistant, if he’s just growing, if he’s coming off of a cold, or what. Or has he become more carb sensitive ? I just haven’t had the bandwidth to really drill down into the numbers like I’d like. But he’s been high for the past month and I really don’t want this to become his new normal.
At some point I’d also like to write about our experience managing his blood sugar in the hospital. It was kind of ridiculous in many ways.