It’s a new year! A new year often means a fresh start and making some changes, and our journey with Harper is keeping with that trend.
Over the holiday season Harper got transitioned to her new seizure medication. The more frequent, small seizures we were seeing stopped, and she finally got rid of that awful rash that she developed on the old medicine.
However, the major, life-threatening seizures made a reappearance. They are not coming as frequently, just one every couple of weeks or so, but each one that comes is a risk we don’t want to take. After not using rescue meds in over a year, we’ve had to administer them three times in the last month and a half. That’s a fairly significant jump.
The newest medicine we started is not without its own new side effects, and that’s been another issue we are trying to work through. This med is greatly affecting Harper’s moods and behavior- screaming, crying, tantrums, and major aggression on top of fatigue, stomach pain, and headaches. It can be exhausting, and it is tough seeing the changes in our normally sweet, joyful girl. Fortunately we have been on break from school, so we’ve been able to deal with this at home, but school starts back next week and we are hoping she will be able to show a little self-control around other kids!
With all of this happening we have been weighing our options. After much prayer and discussion, we have made the decision to turn to Johns Hopkins in Baltimore for Harper’s care at this point. She deserves options and we need a level of consistency that we haven’t had in some time.
We will be seeing the same doctor that we consulted before who specializes in pediatric epilepsy and is the director of the epilepsy monitoring unit. Harper will be admitted to the EMU for EEG studies, and will be evaluated for possible epilepsy surgery options. They’ve also recommended that we have an updated neuropsych evaluation done while we are up there.
They are working on coordinating everything so that we can get as much done in one trip as possible, so we don’t have a date yet. It will most likely mean about a week-long trip… it’s a lot to consider and work out, but we know God will provide every step of the way.
This has been a difficult decision for us. We don’t want to put Harper through any additional challenges if it isn’t necessary. She seems so strong and healthy most days, and she copes so well with her issues. But just one of these seizures could take her away from us, and the side effects of these medicines are taking a toll on her. None of our options are ideal at this point, so we are bathing every step in prayer and trusting God with all that we cannot see and do not understand.
As always, we are thankful for your prayers for Harper and our family as we move forward and seek out what’s best for her.