A few weeks ago, I wrote about Ian getting an EEG to check for possible seizure activity. Back in September, we noticed Ian would get a weird, half-crooked smile on his face, then begin to dart his head back and forth, followed by dropping his head like it suddenly got too heavy. The smile and the head drop were all too familiar, as those were some of the first signs Ian was having seizures. I have countless videos of Ian in these “episodes” at this point. We immediately contacted our neurologist, who had us take Ian in for an evaluation. During the video we showed her, we tried talking to Ian to show he was unresponsive to us during these episodes. He can answer us after his head drops, but he will stop mid-sentence once the seizure starts again. Immediately after these episodes, Ian falls asleep, which is another red flag for seizures. Our neurologist decided to have us increase Ian’s seizure med dosage. After a couple weeks on the increased dose, things actually were getting worse. The episodes were lasting longer (about 10 minutes), and they were occurring every other day. We do have emergency medication for Ian if he has a seizure for longer than 5 minutes, but we cannot use it unless he is full-blown convulsing. We called the neurologist to report the increase has not helped, which led to the scheduling of the EEG.
We got the results of the EEG about a week later. In that timeframe, things continued to get worse. During the episodes, we began to notice Ian’s hands would twitch and his speech became slurred. He also began losing his balance and actually fell down the stairs while experiencing an episode. It’s scary. It’s scary to watch your child go through something like this. His seizures are unpredictable. They happen all hours of the day, regardless of how much sleep he did, or didn’t, get. We haven’t been able to distinguish anything in particular that sets them off. He could be in the middle of any activity, and then all of a sudden he just…. isn’t there. Ian could have been seriously hurt falling down the stairs. We reported this to the neurologist, which pushed for more incentive to get the results back.
October 29, Friday evening, we got a call stating Ian showed seizure activity on his EEG. Because he is already at toxic levels for his height and weight on his current medication, it was decided to add an additional seizure medication as a supplement. We were so relieved for this to finally be over…..except it’s now November 8 and we still don’t have the second medication. Cue the frustration.
The insurance company is currently fighting with us and trying to say he doesn’t need it. Reality is, they don’t want to pay for it. The last 24 hours alone, Ian has had 3 seizure activities. One of which was last night which caused him to fall asleep around 6:30. He didn’t wake up until 5 AM, but had another seizure within 20 minutes of being awake and fell back asleep until now-ish (8:30 AM). The picture posted with this post is from this morning after a seizure. But he doesn’t need it right?
It’s incredibly frustrating to watch our child experience seizure after seizure when it could’ve been under control 10 days ago. He can’t function like a normal child during these episodes, as hard as he tries. That breaks my heart the most. He’s trying to do something as simple as eat his dinner, but can’t even hold his fork because his hands keep twitching.
We’ve been calling. We’re getting told it’s being worked on. But it’s not good enough. I’m drained. I’m exhausted. I just want this to be over.
