Remember how several weeks ago I was all worried about Seizures? Manny was in the hospital and he was obviously sick or he wouldn’t have been there. But then he would have a trigger of something very unpleasant that would cause him to cry or get upset. That would last for several minutes (crying, screaming, raging, angry, etc. ) and then he would sleep for minutes to hours. There’s a certain type of sleep that’s called “post ictal”. And this is what it looked like.
Now you have to understand, Manny is NEVER crying, screaming, raging. And yes, I understand that it could be a culmination of the tortures having been done to him. Or it could be behavioral. Or possibly even him pitching a fit. But the sleep part cannot be.
There was also a look in his face during these episodes that made him look like he was not there. I would have said “Absent seizures”.
Meanwhile, Manny is a bright guy. He is super smart. But he also has a brightness in his eyes. He is very interactive and engaging. He WANTS to connect with people.
And this was disappearing. He started to have a dull look on his face all the time. He was not behind his eyes much of the time. He was withdrawing, sullen and cranky.
I was watching him slip away.
Two weeks ago, there was a day that had me in tears. He screamed and cried and raged for about 6 hours. He would have a moment here and there where he would be quiet but … it was pretty much 6 straight hours. NOTHING helped. Nothing worked.
The next day, it was a repeat of the same thing. I was just about ready to call his Palliative care doctor. I am NOT one for medicines but it seemed like this was his new normal and this was not OK with me. If he was going to be out of control all the time, I was going to need to have an emergency stash of a medicine that could help him.
Not for me. For him. I fight CONSTANTLY for his quality of life. I fight to ensure that he is happy. And he wasn’t.
I cried for a long time that night.
I was determined I would get to the bottom of this and find a way to help him. Long story short, I reviewed in my head when this started, how it began, what are the details and the triggers. And it hit me, this all started about the time we started on a medicine.
So I stopped giving it to him. Figured it was worth a shot.
The next day, he had a few minor issues but pretty much was calm and under control. Even the kids noticed Manny wasn’t grumpy.
By the end of the third day off the medicine, he had no rages or issues. The light started to come back in his eyes.
By the end of a week off, I had my baby back. He is fully engaged. Learning. Playing. The brightness is back.
It’s not “proof” that it was the drug. But it’s enough evidence for me. I’m convinced. I have no intention of putting him back on this medicine. (Yes, I let his doctors know I removed him from it.)
As I write this, he’s been off the medicine for 3 weeks. Still no “seizures”. No more of those blank stares. No more rages. Now it’s just “regular” 3 year old stuff. (OK maybe more than the regular 3 year old stuff ... there's some frustration and pain he's dealing with and we're working on a solution for these.)
I feel like a detective all the time. I pour over literature. I read through medical journals. I chat with I can’t live with that. mothers of complex kiddos. All the time I am trying to figure out a puzzle. Feeds, breathing, neurological, pharmacology, etc. I feel like I’m studying for a crash medical course but if I don’t get it right, it’s not just getting an “F” on a test, it’s failing Manny. That’s not an option.
But in this case, I feel a huge HUGE relief. This isn’t about a neurological decline. It’s not seizures. It’s not the new normal.