Kid Update


Guess who started sleeping through the night consistently? It lasted for two whole weeks. Then E had a session of botox and phenol to loosen his leg muscles, and boy, were they tight, and suddenly — no more night sleeping. He gets up every two-three hours or so. I’m hoping this is a side effect of too much recent upheaval: travels to appointments, overnight appointments, suddenly loosened muscles, travels to see family, weird meals and living out of a bag, and so. Much. Driving.

If anyone out there knows this as a botox/phenol side effect and also happens to read through that mishmash of a paragraph, HIT ME UP. I will send you cookies. Or possibly Brandywine tomatoes, if there are any left. (E is eating them, too!) In the meantime, I remain so. So. Tired.


We did another overnight EEG. E’s brain is

  • still abnormal
  • still slow
  • still everything it was before, etc, and most importantly
  • still technically seizure free.

He is on the cusp of seizures, or in a seizure-ready state, if that makes sense. But the Keppra is controlling that. Our current plan is to let him slowly age out of his Keppra dose and see if he can handle his brain without it. It’s not an appealing prospect, but we think it’s necessary, since it’s possible (but not proven?) that some anti-seizure meds can hold back on development of things like speech. It’s frustrating that so many choices we make for E have to be based on guesswork — even if they are informed, best guesses — because, god, what if we choose the wrong one? It’s too much pressure.


E is doing a lot of cool things with cause and effect. We have several tablet apps that he responds to, but this is his favorite right now:

Cause and Effect Sensory Light Box

It is fantastic. He’s also been more receptive to other people lately. He lets them pick him up, and he looks at them — or at least, in their direction, instead of crying or screaming. He’s also talking more with us, though he’s not saying words yet. He really recognizes and names “Dada,” which is amazing. I probably shouldn’t get too excited, though — when I do, I tend to get more wound up in weird unrealistic expectations that I didn’t think I still harbored, and then I am disappointed by myself. It’s really ridiculous.

Doing these updates does help me remember how far he’s coming, even if his progress is slow.


2 thoughts on “Kid Update

  1. So glad E is still seizure-free! That Keppra must be good stuff. Is it related to the medical marijuana derivative that I’ve read about? Can’t remember the name, it’s named after the little girl who was the first patient. And yay that he’s starting to open up to new people. A big woohoo for the little guy :)

    Liked by 1 person

    1. I don’t think Keppra is related, but I think I have heard about that or something like it. A coworker of mine in South Dakota had a granddaughter who took hemp oil (prescribed by her neurologist, I think?), and it stopped her worst seizures. Will search around, though! <3


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