I keep thinking, “Right. Today is going to be better than yesterday.”
Then it isn’t.
To give you a bit of context of “normal” seizures for Eloise:
- Worst seizure control time (pre correct meds): December 2021 — 51 seizures
- Best seizure control time: May-July 2022 — 1 seizure total
- August — 12 seizures
- September (she had a virus and also doctors added a new medication) — 20 seizures
And now? The last 7 days we’ve counted exactly 100 seizures.
Yup. 100.
That means in one WEEK she had double the seizures she had in her worst MONTH.
For those of you fortunate enough to not be familiar with seizures, every one brings the possibility it’ll turn into a big one like those you see in the movies — where someone’s whole body jerks for 30+ minutes. Though lots of little seizures can cause problems with development, too, it’s these big ones that are far more likely to bring regressions, brain damage, and — in some cases — death. We’ve had 3 of these big ones the past month.
Thankfully, we have a doctor who listens and cares in Tartu. She’s not happy with the situation either. So even though Eloise and I just came back last Friday the 14th, we’ll drive the 2.5 hours there yet again. This time we’ll go down Sunday night for both of us to get a little more rest. Then Monday morning we’ll arrive at the hospital for yet another EEG and overnight stay.
Ours and the doctor’s hope is that the EEG (where they hook her brain up to a machine that monitors her seizure activity) will give us a clue what’s happening. And how best to move forward.
All we can do is hope and pray for better days. Feel free to join us.
At least she’s still cute and snuggly and. when she’s awake, quite happy. Gosh this kid is precious. I just want her to be okay.
Eloise The Tiny Fighter 