The epilepsy monster

It was almost like the epilepsy switch was turned off. Colleen had so much energy, her teachers started asking what we had started doing different. She was vocalizing, almost in a way she was expressing her opinion. And she had some much curiosity.

I’m realizing now that perhaps it was a growth spurt. This morning, I had to hold Colleen as she had myoclonic jerk after jerk. My heart aches for her in moments like these, as I hold her, exhausted in the aftermath. I had really started to hope that the stem cells and her growth were putting an end to the epilepsy monster.

But not yet. I keep fighting and I know to do that, I will have to do everything in my power. We have a donation towards her next stem cell treatment, so working towards saving enough for the next treatment. After much thinking, I started researching what she would need for a seizure alert dog. With how unpredictable the seizure activity is, I know this would be another way to make sure she’s kept as safe as possible.

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4 thoughts on “The epilepsy monster

    1. I wish I could tell! She doesn’t seem like she’s in pain, but she’s non-verbal so she isn’t able to tell me. If she seems extra irritable, I’ll sometimes give her Tylenol.

      1. Jenny Lonus, when you say non-verbal, does that mean she is not old enough to speak words like you or I do or is she not very talkative? I am just trying to understand what you mean.

      2. She will be 7 in October but she is developmentally delayed. She babbles, can say things like momma, daddy and no, but otherwise, she can’t communicate. We’ve tried sign language and picture cards, but it’s extremely limited.

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