A little over a year ago, Benjamin was diagnosed with Infantile Spasms, a form of “catastrophic childhood epilepsy.” That sounds scary because it is. Not that the seizures themselves are what you would think of when you think seizures – they are small jerks. Like a big hiccup, where the baby jerks forward, arms go up – or even just like an exaggerated shrug. But if left untreated infantile spasms can cause a child to regress, stop developing completely and have “devastating effects.” (You can find videos online that families have shared so you know what they look like. If you think your child is having these spasms, go to the emergency room right now.)
Ben was treated (what we hope was) very quickly after developing symptoms and saw results from the medicine, Sabril (vigabatrin), right away and has been spasm-free for a year while on the medicine.
Well, just this month Ben has finally 100% weaned off the medicine completely and is doing great so far! In fact Ben is totally med-free. I don’t think there has been a full straight week where that has been true since he was born.
Now, I don’t want to jinx anything (you can take the baby out of the NICU, but you can’t get the superstitions out of the Dad) by celebrating too early because it might not always be that way. It is not uncommon that once a kid grows out of infantile spasms, they develop other kinds of epilepsy. But we’ll quietly celebrate this small victory in this small corner over here – don’t tell anyone.
In other news, we are heading up to Boston this weekend to go to the Early Connections conference at Perkins. It’s a one-day event for parents of blind and visually impaired children (birth to 7) to get together, learn stuff and network. We’ll tell you all about it when we are back.
And now as your reward for reading all of that – here is a cute photo of Ben wearing a tie.
If Ben has a dirty baseball cap he would look like a Hobart bro
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 when he was still hooked up to the EEG