4 Months Post VNS Surgery Update

It has been a few months since David’s surgery, so I figured it was time for another update.

Thankfully, we have only seen improvements since David’s surgery. We’ve been able to completely wean off of Briviact. When we tried to wean medication pre-surgery, we would often see seizures that would start trending, and lead to a visit to the ER. While we’ve seen seizures weaning post-surgery, they have lessened significantly in length and severity. We’ve also seen a decrease in postictal recovery time.

Some of you may be thinking “you’re still seeing seizures?” Let me explain.

The device has to learn seizure patterns before it can stop them. So while weaning Briviact for example, we would see a few seizure 2-3 days after a drop. After the first one, 12-24 hours later, we would see another one. But after the second, sometimes third seizure, the implant finally caught on to what was happening and was able to prevent further seizures. (When we see him having a seizure, we pull out a special magnet and swipe it across the implant, which sends an extra strong shock to his brain.) After the last drop (when he wasn’t taking Briviact at all), we saw a mini-seizure (the first one being about 40 seconds, and the last one about 5 seconds) every night for a week. They seem to have stopped now, as the device has picked up on what to do.

In addition, we’ve seen cognitive and behavioral improvements. David is finally at a place where it seems he can learn and improve upon learning, rather than staying stagnant. He still has a very difficult time reading, but according to testing at the hospital, the reading difficulties are due to where the seizures are located in his brain (he has focal/partial complex seizures). We’re still looking at ways to help with reading. We’ve tried the Barton method, which helped some, but he couldn’t move on to harder words. It seems to be a matter of his brain not working quickly enough to put together complex words. The last time we tried the Barton method was pre-surgery though, so we’ll be giving it a try again this summer. If you have any suggestions on methods that might help, please let me know!

Behaviorally, David has improved so much. We were able to wean off of Clonidine and Strattera, both of which were used to counteract the behavioral side effects of his anti-seizure medications. We aren’t constantly wondering if David is going to go into a medicinally induced rage. He’s more gentle and friendly to be around. Even a friend of ours who knew David pre-FIRES, and has been with us through all of this, was almost in tears after babysitting David a couple of days ago, telling us just how much improvement she sees in him. Sometimes its hard to see improvements when you’re in the thick of it, so it’s nice when someone else actually sees them too.

The cognitive and behavioral improvements aren’t all directly due to the VNS though. While we did see improvements a couple of weeks after the implant, most improvements were seen while weaning off of medication. Basically, the VNS is doing it’s job to control seizures, meaning we are able to wean medication, and then see behavioral and cognitive improvements because the seizure meds aren’t necessary anymore. For the longest time, anti-seizure meds meant seizure control, but also meant a different David. Now as we wean, we see more and more of who David was before his diagnosis.

He’s also been getting his appetite back slowly- now he doesn’t look nearly as unhealthy as before. I’m telling you- I have a love/hate relationship with anti-seizure meds. They’ve helped keep David alive, but they’ve also caused so many problems that children just shouldn’t have to face.

We still have more meds we want to wean, but are waiting until after we move to do so. The kids and I will be in limbo for a couple of weeks visiting Texas and Louisiana (we leave on the 14th of June) while Jonathan is getting the house moved to our new place in Jacksonville. Once we’re settled in Jacksonville, we’ll see David’s new neurologist, and hopefully continue weaning, starting with Trokendi. Then we may try Ativan and Vimpat. I have a feeling he’ll probably stay on Depakote and Lamictal though. Even if we aren’t able to get him off of all medication, we’ve been able to get him completely off of one without him going in to status epilepticus, which makes me absolutely thrilled.

So overall, good stuff, and we’re looking forward to more!