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So, do you want to know how to really freak out a new mom?

You gravely tell her that if her lovely little baby has beings to have seizures within the first five years of life, not to be surprised, and to immediately make your way to Children’s Hospital.

OR, if you’re feeling particularly provocative…. ask her if any of those special, pre-born movements in the womb, the ones that you treasured during the day and tolerated in the middle of the night, were actually grand mal seizures in action.

Thank you, sensitive Resident Doctor, for that mental image. I didn’t even know that was a possibility. You have provided nightmare fuel for months!!

I do NOT recommend that you try either of the above tactics.

Hearing harsh realities, difficult possibilities, can be really challenging ….. particularly if you are already sleep deprived, and struggling to connect with a baby that every one seems to have an opinion about and you are just trying to get to know, desperately trying to stay in touch with your very-active toddler, and doing what you can to keep grounded. Add hormones to the mix and it can be a wild concoction!

I wept. Poor Jon. How many times did I go rushing to him, asking if Kezia was having a seizure. He is pretty level-headed about these kinds of things, and would come and look with me and assure me that things seemed fine.

But how would I know? Some types are pretty obvious, others not so much. What would I do? How would I keep the panic from setting in and stalling me in my tracks?

The first few months were horrible. I was pretty fixated {read: obsessed!} on all these possibilities. Until one precious afternoon. Mikayla was sleeping in the afternoon (a blessed gift!) and I was sitting quietly, holding Kezia, trying to convince her that she too needed a nap. I started praying over her, every little foot and hand and leg and arm, so perfectly made. And then I got to her head, and all my fear of seizures and learning disabilities and all the things I thought I knew about development delays and what it might be like to have mental and physical challenges came crashing in. And oh how I cried. And in the midst of the mess, came these quiet words from the Psalms:

lightstock-196867-i-am-fearfully-and-wonderfully-made-psalm-139-14

Image Credit: Lightstock

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

Psalm 139:13-16

And Kezia was too. And somehow, no matter what was on the horizon, the LORD would provide for us in His due time. Peace.

When she turned five, I celebrated. In many ways, life had settled in nicely. Baby #3 had arrived, healthy and well, we were passing through {surviving!} the teething stages and Kezia was settling into school and doing very well. And, in five years, that magical number, there had been no seizures.

But.

Shortly before her sixth birthday I began to notice something that seemed a bit unusual. If you are familiar with absence seizures, you will know very quickly that they are not nearly as visible as their grand mal cousins, and can go undetected for quite some time because they are so subtle. By fall of that year (2013), Kezia had gone for an EEG and was quickly diagnosed with absence seizures. Though they are very short in duration (3-5 seconds long), they can get frequent, fast. They are the worst when she is tired or has a cold (the flu isn’t as big of a trigger as a long-lasting cold).

If you, or someone you love, struggles with epilepsy, you will know that life can revolve around a challenging health consideration. There will be times when medication and interventions seem to work well, and other times when triggers arise from out of nowhere, and you need to do some detective work to figure out what is going on.

Kezia’s EEG was scheduled for the early afternoon. By 5pm that same day, I had a phone call from the doctor’s office, indicating that the results had been serious enough to warrant immediate attention. I made it through the phone call, took a deep breath and let the reality of the situation settle in a bit.

After several phone calls, much prayer, and more than a few tears, we decided to go against typical medical intervention and start with the least invasive treatments as possible.

Absence seizures are generally not immediately harmful. Because Kezia is well supervised, at home and at school, we had some time to explore options before trying medication. Some medications can be very effective, however most have very serious, long-term possibilities and if we can avoid that, we will.

We have lived with the reality of Epilepsy for one and a half years now. Since then, we have tried many different strategies to help Kezia’s body cope with this condition. Her school has been very supportive and this has been helpful.

In no particular order:

  1. Rest. We build regular rest periods into Kezia’s week. Wednesday afternoons are at home, sleeping for a little while and just getting a break from the stimulation of school. She also has naps on the weekend to help prepare her body for the coming week.
  2. Fish oils. A friend had a nephew that struggled for a prolonged period of time with grand mal seizures and no medication seemed to work. The best support seemed to come through fish oils. We use quite a high EPA/DHA dose for Kezia, liquid form. As always, check the source to ensure that the product you are using is a high quality. Kezia is not able to do gel caps :), so liquid it is. And she has learned to take a teaspoon in the morning and be done with it. It is my understanding that the fish oils helps to reduce aggravating inflammation in the brain. I am not sure how this all works :).
  3. Glasses. When Kezia started sporting her specs, she would tolerate them at school and whip them off immediately when she got in the door. Since I got tired of always looking for her misplaced glasses :), she learned quickly to put them near my daily calendar on the counter and she never wore them after school. Until I started to recognize a strong correlation between increase in seizure activity when she wasn’t wearing her glasses. After that, she wore them all the time. And now she begs for them if they are missing!
  4. Tracking. For me, there would’ve been no other way to notice patterns without tracking daily how many we were seeing. Patterns help you identify triggers; dealing directly with triggers helps reduce seizures.
  5. Chiropractic. I realize that this might be controversial for some. Chiropractors do not always have a good reputation. However, the person we chose for this has special training in seizure care/chiropractic tactics and never uses manual adjustments. And what can I say? It helps!!

All of these interventions have their place. And we are in touch with our doctor to let her know what is working and what isn’t. After a very stressful late winter/early spring with seizure activity, it is growing obvious that while these strategies were working we needed to do more. If you are familiar with epilepsy, you will probably nod in acknowledgement that while a treatment make work for a while, it sometimes regresses or other medications and strategies are required as the body adapts. It’s a step forward/step backward type thing.

I spent a lot of time on the phone with the Epilepsy Foundation of Manitoba. The person I spoke with was so helpful, funny and understanding. While we could definitely try medication, and that is something we are presently considering, she suggested we look into diet. I had already started to suspect dietary triggers, but had no idea where to start with that. As our conversation progressed, all the things she said seemed to make sense. That started a series of conversations with dieticians and doctors.

We have settled on the next course of action. We will be meeting with a pediatric dietician for guidance as we implement a diet that is high protein/low carbs/no sugar. It’ll be a bit of a leap and a learning curve as we learn to make suitable “sweets” and bring balance to our meals. However, since I make most of our food at home, it is learning more about balance, what to serve at what time and finding foods that Kezia will willingly eat. Once we have this sorted through, I will post about how successful {or not!} this has been.

This is a whole post for another day, but just wanted to add: siblings find epilepsy stressful too. They know that something is serious and not quite right and can sometimes feel the pressure of that. We found out very quickly that our other two girls do not like the word “seizure.” And who can blame them, really? I hate that word too!!

But it is a reality. And sometimes realities are hard. We have found it helpful to refer to triggers as things that could give Kezia a “headache.” For example, if Kezia does not wear her glasses, she could get a headache (which is likely true anyway!). And somehow, that seems to diffuse some of the stigma and fear around the word “seizure.”

If you, or someone you know, experiences epilepsy, I would love to hear from you. What works for each of us is a bit different, as our bodies are so unique and special. However, the emotional journey can be something we can relate to.

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