Benjamin’s Brain

So the other day I gave you an update on Ben’s vision, and today I’ll give you an update on Ben’s brain. It’s no coincidence since we are in the hospital today for a scheduled overnight EEG to check in on Ben’s seizure activity and make sure the meds are still working.

To summarize where we are at this point:

Ben was discovered to have some pretty sizable intercrainial hemorrhages when he was still in the NICU (in April 2011). They were in his optical lobe and his cerebellum. At the time is was a wait and see sort of thing. When they found the bleeds they were already old, and hadn’t seemed to affect him yet. The doctors told us that he would likely be affected by the bleed, but brains are funny and it would be hard to predict what would happen. His prognosis was not great for potential motor skills and intellectual abilities, he was at a very high risk for cerebral palsy and seizures. We wouldn’t know the extent of his disabilities (if any) until we started seeing him miss lots of milestones. (This one of the reasons I get so nervous about his delays.)

In March of last year, Ben started having these small seizures, known as Infantile Spasms– a form of epilepsy that children under two develop, sometimes because of brain injury (like his bleeds). If these seizures are not treated very very quickly, it can be very bad for a baby’s brain. Every spasm is doing damage and the baby stops developing. It’s scary. Luckily the medication Ben is on – Vigabatrin (Sabril) has worked wonderfully for him. One side effect of this treatment is potential damage to vision, but that’s not a big deal for Ben. So far since the drugs kicked in we have not seen another spasm and his last EEG was clear –  but that was back in May.

So we are in the hospital today and overnight until tomorrow to check his brain to make sure everything is still normal so we can start to wean him off the Vigabatrin.

It’s no fun getting an EEG though – they glue 25 electrodes to Ben’s head and wrap the whole thing up so he won’t mess with it and then he’s connected to a computer and watched on video over night. Hopefully in the morning they will have everything they need so they can send us home.

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Ben was so brave during this part – such a tough little guy

Ben's EEG Hat

Ben is not sure how he feels about his new hat

What Ben's brain looks like

This is what Ben’s brain looks like

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4 thoughts on “Benjamin’s Brain

  1. We’ll be thinking about Ben and sending prayers your way.

  2. Wait…. so hooking up a million electrodes to an active toddler’s head and then wrapping him in gauze, and having him “sleep” at a hospital over night is NOT fun…. huh.

    Hang in there! Thinking of you…

    • I know! I was surprised too. Ben is handling it like a trooper though. Just hoping he passes out soon. It was a long day for everyone. But you should see the brain waves go crazy when he tries to stand on his head!

  3. Thinking of you, Amy and that beautiful little tough guy of yours tonight! XO

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