Infantile Spasms

So I’m not going to lie – it’s scary stuff. You know it’s not good news when the doctors recommend you don’t google something. After two nights on the EEG, the doctors told us that what Benjamin has is called “Infantile Spasms” (sometimes called “West Syndrome”). It’s a form of epilepsy that is pretty rare and shows up around this age. What it looks like is his head dropping towards his chest and his legs lift at the same time – it only lasts a half a second and then he’s normal for a bit and then he spasms again. This happens 10 to 20 times over the course of a few minutes and then it is over. It sometimes really upsets him too (and us).

It can be caused by a ton of things, but in Benjamin’s case it is likely because of the brain injury from his inter-cranial hemorrhage (in the occipital lobe and the cerebellum). The scary part you read about if you do google it is the long time diagnosis. There is a big connection between infantile spasms and developmental problems, especially low IQ. There is also possibly an increased risk of death (though that might be less of an issue with medical advances).

Some things say if you treat it early the risks for these things are less. And hopefully we caught it early. And since the causes of the spasms are so wide, it’s hard to say what any individual kid’s outcome will be.

And come on – this is Benjamin we’re talking about. He laughs at percentages and scary google results. He is going to be fine.

The doctors are recommending (and we agreed) to treat him with a drug called Sabril that we are hoping will work. The one big side effect of the drug however is the potential to damage vision – so no big worry there. He’ll start taking it soon once it arrives (for some reason it is difficult to get) and hope it will work quickly and completely.

Thanks again for all the support.

Benjamin on the EEG

Benjamin when he was still hooked up to the EEG

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5 thoughts on “Infantile Spasms

  1. I’ve only recently been following your blog. I’m glad the little guy is home with you now. You are all in my prayers.

  2. The only kid that could still look like a rock star with all that EEG gear! Glad you guys caught this early. I can’t imagine how scary that must be. Hugs to you all!

  3. Glad you guys were able to catch this so early. Seizures are scary looking stuff, but this guy is going to be just fine. He keeps proving that over and over. All the early intervention is going to pay off too. Also, is it weird I want to bite his cheeks? What a little doll.

  4. How scary. :-( I have friends whose daughter had infantile spasms. She’s five (or six?) now and is one of the kids who wound up having severe developmental delays, but as I understand it, they aren’t sure whether it is due to the spasms, or if the spasms were a side effect of another condition — as far as I know they don’t know exactly *what* she has. I’ll be thinking of you, but if anyone can handle it, it’s this guy!

    • Thanks for the note Sarah. :) It seems that a lot of the time they don’t know why infantile spasms start- in our case everyone is pretty confident it’s due to the earlier brain injury. Because he’s already started PT and are about to start OT, I’m hoping that we can get the spasms under control easily and the delays Benjamin has aren’t much worse then they were going to be anyway. He hasn’t really had the regression that I’ve seen described, but his progression has been pretty slow.

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