Absence Seizures in Childhood: A Parent’s Perspective
My job at Nabta Health involves me researching a range of women’s health issues; covering everything from puberty to the menopause, infertility to pregnancy, adapting to becoming a parent and exploring the many challenges that come with the role.
As a mum of two in her mid-30s, these topics not only interest me, but many of them are relevant to my day-to-day life. I can fully appreciate the demands and challenges of being a woman, a wife and a mother. I try to write about topics that interest me, in a way that resonates with women today.
This article is slightly different; I wanted to step away from presenting the facts and figures and tell a more personal story. This is my account of what, to date, has been one of the biggest challenges I have faced as a parent.
How it Began
Emily was our first baby and, as first time parents, we had a tendency to worry, often about the smallest things; was she grumpier than normal and if so could this be a sign of something serious; did she have a temperature, were we keeping her bedroom cool enough; were her legs bending in a peculiar way? I am sure we were not the first parents to have our health visitor (we were in the UK at the time, where it was normal to be assigned a named health visitor after the birth of a baby) on speed dial and we will certainly not be the last. Each of our concerns was soon replaced with something else; until, that is, Emily reached about 18 months of age and we started to notice her doing something strange with her eyes; we called it ‘the eye thing’. Her eyes would flicker backwards and she would lose concentration for seconds at a time. Worryingly, it was happening frequently, perhaps as often as 30 times a day.
In contrast to our other concerns, this was not something we rushed to find an answer to. We definitely should have looked into it sooner, but we were scared and desperate to avoid finding out there was genuinely something wrong. Instead, we turned a blind eye, thinking that if we ignored it and if nobody else picked up on it, then it was not really a problem.
A month after Emily turned two, we moved from the UK to Dubai. My husband became convinced that we should take her to a doctor, even more so after she fell over inexplicably and bumped her head. He said it happened when her eyes flickered and she lost concentration, I said she was just a clumsy child. Naturally I had googled her symptoms and I could not find a website that gave me an answer I liked. It rapidly became apparent that the most likely explanation was absence seizures, but I was determined to find excuses for why it couldn’t possibly be that. For a start, a lot of websites said that each seizure would last up to 10 seconds; Emily’s lapses in concentration were mere seconds. Furthermore, she was young, only just two, and most children are diagnosed at the age of four, or older.
As a couple, my husband and I continued to disagree about what we should do, but with his daughter’s health and wellbeing at stake, my husband was determined we should see someone and it was an argument I was never going to win.
Finally, I agreed to see a doctor. We visited a lovely paediatrician, who suggested we see a child neurologist. She gave us some recommendations and I insisted my husband call to make the appointment. I took her to see the neurologist on a weekday afternoon, just before Christmas 2016. Upon hearing what the symptoms were, the doctor did little to alleviate my fears; an EEG would confirm it, but he suspected childhood epilepsy in the form of absence seizures. I took an instant dislike to him and sobbed in the car on the way home. Suddenly a stranger was telling me that my perfect baby, my greatest achievement, was no longer perfect. In hindsight, I cannot stress enough how wrong it was to think this way; of course she was still perfect. A medical diagnosis should never ever determine the way you see your child.
An EEG was scheduled. We should have sleep deprived Emily so that they could perform it whilst she slept. Absence seizures are a lot more common during periods of sleep, than wakefulness. Plus, I am not sure that many toddlers would tolerate having multiple electrodes stuck to their head and having to sit still for over 45 minutes. This first time we went through the procedure it was not well explained to us. We had not been told to sleep deprive her, so we arrived at the clinic at 9am and were told to make her have a nap. Emily resisted quite vehemently, even after being given a sedative. In the end, I sat rocking her as she screamed herself to sleep, with tears rolling down my own cheeks. I was about 20 weeks pregnant at the time, so probably feeling a little emotionally unstable myself. Once asleep, the technician covered her scalp in electrodes and hooked her up to a monitor. We watched as each wire produced a trace. We didn’t know what we were looking for, but the rapid scribbling of the pen every so often did not fill us with confidence. As she slept, we were googling EEG traces, trying to map the ones Emily was producing to those on the phone screen in front of us. Our attempts to self-diagnose did not go well (although I never learnt my lesson and for each subsequent EEG, I would spend a significant proportion of the time trying to determine what a ‘normal’ trace looked like and if it matched the one my daughter was producing. I never did work it out).
In the end, the doctor barely needed to look at the traces to present us with his diagnosis. Epilepsy. It was official, not really a surprise and not by any means a tragedy, but upsetting enough. She would need medication to control the seizures. The doctor started her on Depakine, also known as sodium valproate. He told us that the easier we found it to control her seizures, the greater the chance of her outgrowing the condition. The lower doses of the drug did not help; we did see an improvement as the dosage increased, but if she was tired or poorly her eyes would start flickering backwards again. We were seeing the doctor every few weeks in an attempt to optimise the dose. Finally we got to the highest dose, if this failed we would have to start from the beginning with a different drug, but fortunately this was not necessary. Taking the maximum dose the doctor would allow, Emily stopped having visible seizures. Six months later we went for another EEG to see if she was also seizure-free whilst asleep.
This time we were better prepared. My husband kept her up until past midnight and I got her up at 4am. We made it an adventure. The benefit to living in Dubai is that the good weather allows for a 5am play at the park. Attempting to make her sleep on demand was still not a great experience, the sedative seemed to have little effect and by this stage I also had a six month old to manage by myself as my husband had work that day. It was the day before my birthday and genuinely the best present I could have got came when the technician told me (off the record) that the traces looked clear to her. The doctor confirmed this and said we continue as we were doing and after two years of being seizure-free we would attempt to wean her off the medication.
The Next Two Years
We were lucky because Emily is a well behaved child and never once objected to taking her medicine. It became as routine as brushing her teeth and life proceeded as normal for the next 18 months, with occasional check-ups and, fortunately, no setbacks. I even started to quite like her doctor. During her routine appointment in early 2019, the doctor said it was time to consider taking her off the medication. Despite his reassurances that over 85% of children with this form of epilepsy outgrow it and despite the fact that I had so desperately not wanted her to be given a label; suddenly when faced with the prospect of taking away the stability of the medication, which had essentially been acting as a comfort blanket, my husband and I were both quite anxious.
First though, another EEG to confirm that she really was still seizure-free. To be completely honest, I am not sure what results I was hoping for at this stage. A clear EEG would mean we would have to try weaning her off the medication. This prospect was so unnerving that I really do not think I considered what the alternative would mean. Another night of sleep deprivation; this time we had the technique down to a fine art. A midnight walk around the neighbourhood with torches, followed by some 4am scone making. Never one to be left out, our youngest, by now almost two years old, decided to join us for our baking session! No sedative needed this time, she still cried herself to sleep in my arms, but I remained dry eyed.
A week later I visited the doctor for the results. By this time I trusted him implicitly and would not hesitate to recommend him to others. A highly skilled expert in his field, I firmly believe we received the best care we could have done. My animosity from two years previous had long since disappeared. The EEG was clear. We had about 6 weeks before we would reach the vital two year mark, but after that it would be time to start reducing the dose. Grateful for the six week breathing space, it was difficult to know how to feel at this stage. On April 1st we started dropping the dose and after 5 weeks Emily took her medicine for, what was hopefully going to be, the last time.
This brings us to the present day. The doctor has told us that the next six months are critical; this is the time when she is most likely to relapse. If she remains seizure-free until November he will discharge her. The first few weeks were anxiety-ridden for both of us, we obsessed over every little fall she had, and we watched her like hawks. I told her teacher at school, but then dreaded pick up time, in case the teacher had bad news for me. Every week that passes is easier though. My husband is more pragmatic than me; when I sought answers for what we would do if the seizures came back, he said we’d put her back on medication and try again in a year. There is an 85-90% chance she will remain seizure-free. Those are pretty good odds and if the worst does happen, at least we know what the process is now and we know we have controlled her epilepsy before and will do so again.
I wanted to write about my own experience, not least because I find writing in itself to be highly therapeutic, but also to reach out to others going through a similar experience. I am exceptionally blessed to have two happy, healthy children and I consider myself truly fortunate that this has been our biggest parenting hurdle to date. Perhaps at times I over thought it, or over-reacted; maybe I should have been tougher and spent more time being grateful that it wasn’t anything more serious. But this is what parenting is; it is wanting to protect your children with every single part of your being, it is feeling like whatever choices you make and however you manage a situation, you are doing it in a way that is wrong; It is crying with your children and for them. It is hard, but my goodness, it is worth it!