We are tired.
Two weeks ago today we left home, and we are on the road as I write, making our way back south. (And for that I am SO grateful!!)
It’s hard to summarize this whole trip. A lot has happened, and it will take some time for us to get full reports on everything. Harper has her neuropsych testing at Kennedy Krieger at the start of the trip, and there were some definite red flags, but I have a phone conference next week to get the official word on that.
Harper spent eight days total in the EMU at Johns Hopkins, hooked up to the EEG and monitored round-the-clock by video. We had the usual hospital experience with IVs and nurses and doctors, mom sleeping in a recliner, hospital trays of food, and so forth. Through it all our girl kept smiling and cooperating and making friends with everyone who walked in the room. The only time we had tears was at the end, the last two nights at bedtime when she realized she had to sleep there yet again, and the last day as they removed all the sticky stuff that had broken her skin.
The goal of this trip was answers. As Harper has grown, she has made her way through a list of medications that haven’t worked for controlling her seizures, and there haven’t been any other options. The doctor’s main purpose with this study was to see if they could pinpoint where Harper’s seizures are originating with the hopes of being able to offer surgery as an option down the road. Naturally, the assumption has always been that her seizures are coming from the part of her brain where her brain cysts are.
That assumption was correct- and incorrect. Unfortunately, this EEG proved that her seizures are coming from two different locations, both the left and right sides of her brain. This most likely means that surgery will not be an option to help her, but her case will be presented and discussed at their conference next week and they will let us know their recommendations from there.
The other thing that came up this week is a new diagnosis. While Harper does have seizures at various times of the day and still has a tendency to go into status, she has also developed a rare from of epilepsy called ESES, which means she is having seizure activity pretty steadily in her sleep. This is escalating into seizures in one part of her brain that we do not see her having- the EEG showed three definitive seizures in addition to the other activity in one night, and she never even woke up.
Our immediate concern as parents is the danger factor, but the doctor did offer some reassurance that while the risk of death is higher with seizures in sleep, that is associated with tonic-clonic seizures, and Harper shows a pattern of waking up and making some noise if the seizure starts to spread like that. The biggest concern at this point is learning and development. ESES can cause a regression of skills, learning disabilities, memory loss, etc, which combined with Harper’s cysts and damaged brain areas is not ideal.
They have decided to start an aggressive treatment immediately, which is a high-dose of a medicine she happens to already be on. It is a strong medicine, but since she has been taking it already they know she tolerates it well. It will just take some time for her to adjust to the higher doses, and we will go back in a month to have a smaller round of testing done to see if this treatment is proving to be effective for her.
Fortunately we are out of school for the summer so we can get this testing out of the way and give her body time to adjust. She is extremely tired, a little unstable on her feet, and quite moody, but we’re hopeful that will all settle down in the next couple of weeks.
We have so much to be thankful for, and as always we can see God’s hand in it all. It is a blessing to know Harper is getting the care she deserves- as a parent you will do whatever it takes to get answers and help for your child, and it has been a relief to finally see that happen. Now we keep pushing forward, for He who promised is faithful!