We made another Duke trip today. At this point, I’ve lost count of how many times we’ve made this trip, but today was a good one! We made it there and back uneventfully, and our girl was in a particularly agreeable mood today- I think she welcomed her own space and some down time in the backseat alone after the chaos of the last days of school and adjusting to her sisters being home every day.
This appointment was to touch base regarding Harper’s new seizures that developed in the last 1-2 months. We had already increased her second medication, but we are going to up it a bit more since it’s only been a week since her last seizure and she’s still having the weird stomach and eye symptoms.
It’s also time for another EEG study to see if they can pinpoint exactly what kind of seizures Harper is having and where they are coming from. The doctor listed off several types of seizures they know Harper has had (a bunch of big words that flew right over my head!) and said that this could be a different kind stemming from the area of brain damage she has (the occipital lobe). They have to figure it out to know what medicine to treat her with… if it is this new kind of seizure that they’re thinking, our newest medicine may not be the best treatment. However, it could be that her stomach symptoms are not seizure related, in which case we will need to see a GI doctor and look at an entirely different medication altogether.
The fantastic news is that we were given the option to do an ambulatory EEG this time- PRAISE THE LORD!!! This means she will get hooked up to the probes and monitors, but can stay home instead of being admitted at Duke. The downside is that they can’t do the video and audio monitoring, and they can’t wean back her medications to push her into a seizure on the monitor, so we have to hope they can get some data. But it’s well worth the chance if it means they can get information without a hospitalization!
Harper has also been having some severe mood swings and outbursts, but we learned that her medication should actually be helping with that, not making it worse. So that is coming from somewhere else, but there are lots of factors to consider. Her balance and coordination have been worse lately as well, but that is a side effect of the medicine we are increasing (and could also be related to vision issues).
So, we’re on a medicine increase immediately, waiting on blood work results to be sure her body is responding well to all of her meds, and awaiting appointments for vision testing, the ambulatory EEG set-up, and a referral to a behavioral specialist. We also have her next MRI scheduled for August to take a look at her cyst with her neurosurgeon- an appointment that we need to get rescheduled earlier so as not to interfere with her starting kindergarten, so we are praying they get a cancellation!
I think that’s it for updates tonight… I am so proud of our little warrior for always being so brave. These trips give her much anxiety, and it’s never fun getting poked and prodded and letting them “get her blood out,” but she stays strong and keeps on smiling. God has big plans for this chick!