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!



6 thoughts on “Vigabatrin

  1. Being home longer than in the hospital is a HUGE milestone!! Congrats to all of you!

    So sorry to hear about the seizures. I hope and pray the medicine will work.

  2. wow!!! yes, i can see just how much he enjoys (?) eating. be a good boy benjamin.

  3. I’m praying that the medication will both work and leave Benjamin’s vision unharmed. Loved seeing the intensity of his desire for the peas!

  4. Wow, he has a real passion for food. Sorry he gets so upset during the seizures, it must be scary. We’re praying the meds help him.

  5. So when I quickly read the title of the post in my inbox, I thought it said “Vita-Big-Brain.” Sort of is in a way really…Also, have you tasted formula? It is gross. Your boy clearly just has good taste.

  6. I’m glad one of these kids like peas 🙂 Kaia will only eat them if I mix the peas with something she likes (sweet potatoes, carrots, squash). Love you guys! And lots of love and snuggles to my favorite super preemie nephew 🙂

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