Many have asked about our sweet daughter Abigail and are looking for an update regarding her continued seizures. The good news is, Abigail continues to be our happy and spunky girl! Unfortunately, she also happens to have seizure episodes that so obviously wear her out. If you are looking for the latest updates on Abigail’s journey to seizure control, continue reading!
As many of our friends and family are already aware, we suspect Abigail was having seizures as early as when she was 6 months old. We first recognized her unusual movements as possible seizures somewhere around 8 months of age where a hospital admission at a trusted Children’s Hospital left her with the diagnosis of infantile spasms. We got her infantile spasms under control and had a really lovely period where Abigail was seizure-free and making great improvements in her physical and mental development!! However, we eventually began noticing seizures again. This led to the testing that gave us her newest diagnosis of Focal Cortical Dysplasia (FCD) and a good idea of what the likely cause was of her infantile spasms.
(If you are interested in reading about the steps we took to discover her diagnosis of Focal Cortical Dysplasia and what it is you can read that update here!)
Since her diagnosis we have been gradually experimenting with anti-seizure medication combinations and dose increases to see if Abigail would beat the odds and achieve seizure-freedom with meds alone. Unfortunately, it is pretty clear now that, as is typical with FCD, she has what are known as drug-resistant seizures. Because of this we are actively exploring the possibility of epilepsy surgery, or surgery with the goal of achieving greater seizure control for Abigail by addressing the brain abnormality causing the FCD. Epilepsy surgery could include several possible things from inserting a device that would disrupt the chaotic electron activity, to removing the problem area entirely if it can be determined that it is not an essential portion of the brain.
While the idea of any kind of surgery on her brain sounds intimidating, the idea of her feeling consistently miserable after each seizure is enough of a motivator to explore our options and see if she is eligible for surgical intervention.
One of the key factors in whether or not Abigail would be a good candidate for epilepsy surgery would be determining the precise location in her brain where her seizures are originating. If we intervene at the source, we stand a much better chance of successfully controlling Abigail’s seizures!
In order to try and understand more about her episodes and explore the possibility that the brain abnormality we identified on the MRI as being the seizure cause, we had to have her admitted for a long-term stay EEG with video and audio monitoring. This multi-day test was done in the hopes of capturing continuous data for both her typical non-seizure brain activity, and also several seizing episodes as well. At the time, the hope was that we might be able to really pinpoint where the chaotic brain activity that occurs during her episodes was originating from.
We were originally only intended to be admitted for 5 days. Abigail was weaned off of most of her anti-seizure medications in order to allow the episodes to happen naturally. In order for the data to be most complete and accurate, Abigail also had to be under 24/7 video and audio surveillance monitoring which meant she was unable to leave her hospital room.
I’m sure you can imagine how well keeping a bored toddler in a single room for over 5 days went.
Abigail’s body decided it wanted to be stubborn and tough despite the drastic medication decrease and it took her almost a full week to experience three separate seizure episodes for record. During that time she grew progressively more irritable, and VERY tired of one-on-one time with her bossy mommy. She missed her daddy. She missed her rambunctious siblings. I’m sure she also missed having the freedom to go outside or wander from room to room without a headsock and electrodes on.
Eventually, we reached a point where I could no longer delay getting back to work so Abigail got to spend a little time with her daddy in the hospital instead. She was still irritable, but I think even that little bit of change did her good!
Within the next few days the doctors went on to share that they had successfully gathered some data on what a typical seizure episode looks like, how long it lasts, and more about the nature of her episodes. To our dismay, they also informed us that the EEG scan was only showing abnormal brain activity once it had spread across her whole brain. We are told that this didn’t necessarily mean her seizures themselves originated across the whole brain, but rather than they were starting deep enough in the brain tissue that a basic EEG was not sensitive enough to pick it up.
Frustrated, but encouraged that she had done so well even with the lowered meds, and also that we had additional seizure data under our belts, Abigail and Bobby (her daddy) were discharged.
So, what do we do now?
Well, Abigail will need continued testing using methods that are capable of providing a fuller and more precise picture of her brain structure and the seizures she is having. There are three tests we are now looking at doing for Abigail, which will unfold in a two-phased process.
First, Abigail will be scheduled for two different kinds of MRI’s. Each of them will require sedation since she is so young and the need for her to stay completely still is so vital to getting accurate results. This also means two separate trips to the Children’s Hospital, which means two very long days ahead.
The first of the two kinds of MRI’s is a PET MRI, which I am told has the ability to really pinpoint which areas of the brain are using more or less energy during any given moment.
The second type of MRI is a MEG MRI which is sort of a hybrid between an MRI and an EEG. This one seems like the one of the two that feels most promising for giving us the most insight, but it’s really all a bit up in the air with what they will find.
Originally, we were concerned that Abigail would somehow need to be experiencing a seizure episode during the MRI scans in order for them to give us the information that we needed. Fortunately, I had the chance to speak with our neurologist and this is not the case! Sweet relief! This momma was so stressed about the idea of trying to induce a seizure episode while in an MRI machine and I was so confused about how that would help her remain still. It is so true how blessed we are to live in a time when we have technology and the skilled providers that are able to walk this journey with us.
Once Abigail’s MRI results are both in and the neurologist has the chance to present the data to their board for discussion and professional consensus, we will be told if we are moving forward into the third test. A specialized EEG called a Stereo EEG which would involve yet another multi-day inpatient hospital stay similar to the one we just completed. This time however, the EEG electrodes would be more than just stuck onto her scalp; this is an intercranial EEG. The electrodes would be surgically implanted roughly 1cm deep into Abigail’s skull where they would be considerably more likely to pick up on brain activity from much deeper in her brain tissue. From there, most of her hospital stay would remain the same as before where we remain in the hospital under surveillance until she has 3-5 captured seizure episodes.
Rest assured, we asked ourselves if this was all necessary. Is it worth putting her through all of this?
Looking at how grumpy and tired she gets following an episode, knowing how much greater her quality of life might be with the potential for greater seizure control, and also with the full awareness that Abigail is one tough cookie who has proven repeatedly she is up for the challenge. We have decided God’s clear answer for us is ‘yes’. We want happiness and freedom for her, which involves some short-term suffering.
Abigail would be in the care of doctors and neurosurgeons from renowned Children’s Hospital departments who do these kind of procedures all of the time, and to children her age as well. She will be in good hands, and we value and appreciate that our neurology team is not afraid to be frank and up front about our options.
We ask for your prayers for strength and endurance for Abigail. She is such a trooper, but the poking, prodding, and touching has without a doubt worn on her pretty considerably.
Pray also for these three information-gathering tests. Pray for clear, detailed, and precise images so we can get as much quality info as possible!! Pray for our schedules as we work in several trips to the Childrens Hospital and need to find childcare for the other two kids. Perhaps most of all, pray that God’s hand will move greatly through Abigails story and her journey- that we can become extensions of God’s comfort, certainty, and patience.
To all who check in regularly on our Abby girl and the other two kids as well- we love you and appreciate your support!!
Have a phenomenal day! ❤️
