On social media I said I would post an update after I prayed and processed.
Instead, I’m updating as I pray and process because this writing thing helps me in the processing. Plus, at this point, I may never be through the praying and processing!
To say that I’m shell-shocked this evening is an understatement. And I really should not be because with Harper nothing has ever, ever been as expected. Yet here I am.
Back in December I reached out to Harper’s neurologist in Baltimore after she had some visible seizures. It was a super busy time of year and there was lots of excitement, and sure enough once she was out of school and had time to rest the seizures seemed to stop. Still, we decided to follow through with our EEG and appointment this week, fully expecting to go in and hear that the meds are working as they should be so we can just continue on with our current course of treatment.
So, it’s really complicated, but basically our girl is having constant seizure activity. For whatever reason her brain is now firing abnormally most of the time. Her EEG showed right at 100% of the time in her sleep (totally confirming the ESES diagnosis) and well over half of the time when she’s awake.
The confusing part for us is that we don’t see a typical seizure so we don’t understand the severity of what’s happening. But as it was explained to me today, her brain is not getting any rest. This impacts her learning and behavior. And the high rates of “blips” when she’s awake impact her cognitive function, her attention, her learning, her focus, her memory… we never can be sure if she’s fully “with us” or not. A lot of the strange or impulsive things we notice her doing could be attributed to this seizure activity. This also puts her at a higher risk of bigger seizures and SUDEP.
Treatment is tricky. ESES is rare and fairly newly discovered so there are not a lot of options. There are three meds to choose from without going to a more challenging treatment with risky side effects. She built a resistance to one quite a while back, so that leaves us with one option to combine with our current med. This new one can have some unpleasant side effects that need to be monitored so Harper got reintroduced to blood work today- not fun.
We have a month to see if this works. There is too much at risk to let it continue, especially as quickly as it has progressed. The good news is that we caught it when we did, and that we have a doctor who is taking it seriously and treating it aggressively. She was amazed at how well Harper is doing in spite of all of this going on, but that is the power of God!
This is where I normally write all the great, positive stuff, but I’m not. It’s not that it isn’t there. It is. Spend a day with this girl and you’ll see all the goodness of God. Meet Jesus and you’ll see all the reasons to shout and give thanks. And come back to this blog later and I’ll be ready to testify again.
In the meantime, please lift this weary mama in prayer. This was not the news my heart was prepared to hear this week, and with this comes the threat of so much fear and uncertainty. I say threat because I have a choice to let it take root, and I choose daily to fight it. I have also been dealing with some minor health inconveniences of my own that are exasperated by stress, and I’m doing this without my husband right now, so this has been a season of pressing even harder into Jesus!
Bottom line, we need this medicine to work amazingly well with no side effects over this next month so we can keep pushing forward 🙏🏻