You never know what a week may hold when you’re parenting Harper. We are currently on the road back from a day at Duke, a trip that was not on our agenda 48 hours ago. But when the neurologist contacts you and says she wants to see her ASAP, you jump in the car and go!
So, we made the trip today and met with the neurologist to discuss treatment options for Harper since we have having issues with medication consistency. Harper has been on two medications for a while now, and one of them she has been on a particularly long time. That’s the one that we’ve been having trouble getting in her consistently, and the doctor thinks she has developed an aversion to it.
When Harper had the extended EEG study, they had told us that we would be getting close to running out of medicine options. However, we apparently still have some options on the table, and we went over those today. For now, a combination of two meds seems to be working well for Harper when she takes them like she should. The problem will come if we end up needed a third medicine, but we aren’t there yet. At this point, there are some others medications that work like the ones she is on, so we can switch them out. We discussed the different medicines and how they are offered, and their side effects, and decided on one to try. The good news is that it is offered in a chewable tablet and a disintegrating tablet, so we should have no trouble getting it in her. The bad news is that it can cause Stevens-Johnson syndrome, so we will have to introduce it slowly and watch her closely.
This is our immediate change, but we have other options they want us to consider as well. The ketogenic diet is one possibility, but not a great option for Harper in this season- it involves hospital stays and some understanding on her part that she just isn’t ready for, but is something we could consider way down the road when she’s older.
The other two considerations we are supposed to think about are both surgical. There is still the possibility that they could remove the section of her brain where the seizures are starting if they can pinpoint where that is. While the neurologist feels this is a good option, for Kirby and I this is the least viable option right now. There are a lot of ways that could go wrong and it isn’t guaranteed to work, and we are not willing to consider it until they have more data and can persuade us that the benefits outweigh the risks.
The second surgical option is one we haven’t heard before, and the one the doctor is highly recommending… Vagus Nerve Stimulation Therapy (VNS). They would implant a box in Harp’s chest with wires wrapping around her vagus nerve. It’s similar to a pace maker but for the brain, sending electrical pulses to the brain to control seizures better via the vagus nerve, which runs through the neck. There’s also a magnetic tool that we could use to stop a seizure without medication. It seems to be a viable option, but there is always some hesitancy on our part when they talk about putting things in our daughter’s body.
We have some big decisions to think about, and in the meantime we’ll be going through another transition period with medicines. We also have a feeding study scheduled in a couple of weeks at Duke, then a sleep study at Duke, and then a trip to Baltimore for neuropsych testing with the Kennedy Krieger Institute through Johns Hopkins. We also think we are going to go ahead and get on the schedule for the big EEG testing with Johns Hopkins so that we will have all the information we need to make these decisions.
As always, we appreciate everyone’s prayers ❤️