Samson was discharged from the hospital yesterday. His NMDA-Receptor antibody tests came back NEGATIVE. For that we are so, so grateful. His EEGs overnight for the past week were stable – there were marked seizures and a few random spikes but the overall brain pattern looked good, according to his neurologists. And he has been doing so much better since he was discharged.
He received a complete round of intravenous immunoglobulin (IVIG) to suppress an autoimmune attack – under the assumption that his symptoms were caused by an autoimmune encephalitis. But we haven’t received any of the other antibody test results back. So we don’t know for sure. If they do come back positive, we may need to evaluate if he needs steroids to do further immune modulation.
We still don’t know if he has GAD-65 encephalitis, another form of autoimmune encephalitis, or some atypical presentation of “idiopathic” epilepsy (or, more unlikely, but still possible, some metabolic disorder that causes epilepsy). But given that he didn’t seem to have any deterioration in his symptoms they felt he was safe to take home.
He will have to come back for an additional lumbar puncture and MRI scan to see if there’s improvement (or worsening) in the imaging of his brain, as well as another EEG. He has been through so much in the past 7 days in the hospital, but he’s an amazing, tough, resilient little boy and amazingly seems to be in better spirits than me or Mitch. He is taking an anti-convulsant twice a day; he hates the taste and he’s complaining that his tummy hurts. HEs’ almost back to his old self, though irritable and his memory seems not quite as good as it was before. Though he was always super sharp so it might not be noticeable to others. Right now everyone is watching him like a hawk to make sure these are not signs of worsening symptoms.
While he is doing well, I, however, am a mess. I hide it from him but I’m pretty worried about the possibility of either an autoimmune encephalitis or a diagnosis of epilepsy. Some kids do outgrow it, and so far his seizures seem to be tapering down (he was having more than 100 a day at first admission and is now down to a few a day). But for now, his discharge diagnosis is epilepsy. We have always striven to make him unlimited with his diabetes and for the most part we succeeded. But I’m just not sure yet how to do that.
The doctor said he can’t climb higher than three feet (even though he has never had a generalized seizure) and can’t take a bath by himself. I’m not sure what the story is with gymnastics, but clearly it’s something we’ll have to assess. I hate that we’ll have to tell his piano teachers, and his preschool teachers, and I hate the idea that they may switch from thinking of him as just a lovable little kid to a liability. It kills me to imagine Samson not able to play at our neighborhood playground.
Reading about adults with epilepsy, it seems like many people are pretty limited by their seizures; many, for instance, don’t cook on a stove or oven, but use things like the InstantPot or microwave exclusively. They choose to live in houses without stairs (we have about 50+ stairs into and throughout our house). They replace their hardwood flooring with carpeting and get rid of all furniture with sharp corners. Many don’t feel comfortable living alone. And it’s illegal for most to drive if they’ve had a seizure in the past year. Those who have generalized seizures have a 24-fold higher risk of sudden unexplained death at night. And the statistics on people with epilepsy in adulthood seem pretty dire; many even intellectually normal people seem to have significant trouble with forming romantic relationships, maintaining friendships, finishing school and holding down a job. A huge chunk have issues with executive function, ADHD and aggression. It’s not clear why but I am really going down a rabbithole worrying about these future what-ifs. I know it’s counterproductive and that for now we should just be grateful to have our beautiful little boy back home and healthy with us. I am trying to be grateful and stay positive for his sake but honestly, right now it’s a struggle.
I’m also worried about autoimmune illnesses and how we can get ahead of them for Samson. His type 1 diagnosis could have been a fluke; we operated with the knowledge that he *could be diagnosed with more autoimmune diseases like Hashimoto’s or Celiac’s disease, but we didn’t really worry too much about those and figured he’s still at the same baseline risk of racking up other diseases as most people. Now he’s a 4-year-old who has potentially already had two life-threatening autoimmune diseases. Will he get a new diagnosis every few years? And how do we get ahead of that risk – is there some kind of genetic or immunological testing we need to do to figure out what’s coming around the bend? Does he need some kind of extra treatment to make sure he can live a long, healthy life?