Samson has been home for a week now. He went back to preschool on Wednesday. He has not had any seizures (that we have noticed) but I lay awake most of the night and watch him because I’m scared of him having seizures at night that we’ll miss. I know I need to change this but for now that’s what I am doing to make sure he is safe.
We were discharged from the hospital with no clear plan except that if his symptoms worsen or he seems to be deteriorating (i.e. he’s having seizures or marked behavioral changes) we need to check in. We did check in on Tuesday but they seemed reassured because he was having a good day, so to speak. ALL of the autoimmune antibody panel in his cerebrospinal fluid were negative, though he had a slightly elevated level of something called anti-cardiolipin B. We haven’t yet discussed these findings with his care team, so we don’t know the significance of this finding. However, they said that even a negative result on the antibody tests would not change their diagnosis of nonspecific autoimmune encephalitis, given his presentation. (Basically, a specific signal of inflammation on his MRI – a T2 flair or hyperintensity — along with a sudden presentation of focal seizures in two different spots, along with a few lymphocytes in his CSF and elevated CSF pressure.) But it’s such a squishy and amorphous diagnosis that I don’t feel that confident.
He is taking an anti-convulsant called Vimpat. We are having trouble determining whether the medicine or some underlying disease process is causing symptoms, but they are quite noticeable. He wakes up every morning and sounds very depressed and whiny. He is super tired, yawning every few hours. In the evening he seems sort of hyperactive and aggressive, often hitting people randomly. When you ask him why he says he feels crazy and also he doesn’t know why. He’s complaining that his eyes hurt and he has a headache and a tummy ache.
Cognitively, he seems like he is sometimes as sharp as before and sometimes he has trouble concentrating (and/or seeing). For instance, he can sometimes make it through one reading lesson really well (we used to do two a day but the lessons do get harder as you go along). Yesterday he quit after half of one – he seemed to have trouble actually seeing the letters properly 
He can still do addition up to 20 but he now uses his fingers to count instead of tabulating in his head. But some days he seems just as sharp and like he’s improving. It feels very cyclical.
His blood sugar management has been TERRIBLE. I don’t know why. Last night he randomly spiked to 350+ then crashed to 63. Loop was automatically regulating his blood sugar, so all these changes happened without me intervening or “rage” bolusing. He’s been running high all day but the night before he was super low. I saw him trending down and treated him at 100 mg/DL (so usually plenty of time to plateau). He dropped to the 50s, finger stick confirmed 63. I treated again. Finger stick 55. I treated again, finger stick 46. Loop had zero-temped him for a long time so he had -0.3 units on board, which usually would cause him to rise eventually. Finally I gave him 5 units of mini-glucagon because it just didn’t seem like he was able to digest his food. All told, he was below 60 for at least 2+ hours. He then spiked up to 250 as he woke up.
I know a pattern will emerge at some point (it has to, right???) but for now it just feels like I’m riding a rollercoaster and still in the middle of the ride. And the part of me that sees patterns everywhere wonders if this erratic glucose control is somehow a harbinger of something ominous going on in his body.
I think the hardest part is that our medical orders are so ambiguous. We have this tentative diagnosis – autoimmune encephalitis – but we have no positive confirmatory tests. That means that we did a treatment but have no proof it worked. And the suggestion that it is relapsing/didn’t work is all based on symptoms. Which means we’d have to give him further, potentially painful and dangerous treatments, with no analytical tests to show it was successful. Meanwhile, he didn’t receive the typical first-line treatment (we did IVIG but not the steroids) because they were worried about his blood sugar management. So I have the added uncertainty of not knowing if he’s not doing so well because we just didn’t give him enough treatment?
Meanwhile, the symptoms of this diagnosis are so nonspecific and can mimic the side effects of the medicine, possible symptoms of the “interictal” period between seizures, as well as ongoing cognitive deficits associated with long-term seizure activity. We were told to come in if his seizures recur or if his symptoms get worse – but how do we decide what’s worse? WE took him in on Tuesday and they determined he was doing well. On Tuesday he was doing really well. But yesterday he seemed worse, and the symptoms seem to be coming and going. He has had no seizures (which are a very specific type of lip seizure and tremble) that we can see. But who’s to say he’s not having some really subtle type, like maybe an absence seizure – and we just can’t see it??
It’s all so uncertain.