Infantile Spasm Update

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.

bro ben

If Ben has a dirty baseball cap he would look like a Hobart bro

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Vigabatrin

It has been very frustrating, but we are finally getting Benjamin’s seizure meds today. We’re hoping they work and they won’t have to try one of the meds with more side effects. As we said last time, the Vigabatrin (Sabril) has one pretty nasty side effect (possible vision loss) but the other options aren’t much fun. The vigabatrin works for a lot but not all babies with infantile spasm – fingers crossed.

In about a month they will bring Ben back in for an overnight EEG and hopefully see improvements in the waves. I just want to see the spasms stop – they are heart breaking. Especially because they scare him and he gets upset.

In other news, even with our stay this week, as of yesterday Ben has been home longer than he has been in the hospital!

And remember how I said I was going to write post about how much Benjamin likes peas? He also likes chicken and rice and has been really good eating solids. It is amazing, especially since he gives us such a hard time with a bottle most of the time.

This photo is from this morning and while it looks like he is upset – he’s really just biting the spoon with gusto!

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