The truth no one tells you about febrile seizures

I hadn’t heard of febrile seizures until my seven year old son Dylan had his first one at the age of two, but I certainly know enough about them now. I know the fear of witnessing his little body shaking so violently it looked like he could break apart, and of thinking that my son was going to die in front of my eyes.

The first febrile seizure

Dylan had had a temperature overnight and my husband Mark and I were dozing with him on the sofa the following afternoon after a sleepless night. I suddenly woke to the sound of Mark shouting at me.

I looked at Dylan who had been cuddling in to me and he was slumped and dribbling, his lips blue and his breathing laboured. We had no idea what had happened, but as I frantically rang 999 Mark lay him in the recovery position on the floor and instinctively tried to bring down his temperature by removing his clothes and covering his little shaking body in wet wipes.

I remember vividly the rasping sound struggling from his mouth as his chest stuttered in and out so slowly, as if he would just stop breathing. I also recall crying on the phone, saying he wasn’t breathing (even though he was, albeit unconvincingly), whilst Mark calmly reassured Dylan that we were there.

After what seemed like an eternity two paramedics arrived and, without any sense of alarm whatsoever, casually asserted that Dylan had either aspirated some dribble (of which there was an abundance due to apparent tonsillitis which had probably brought on the fever, unknown to us until later in A&E), or had a febrile convulsion.

Thankfully Dylan quickly came round and, although extremely groggy and irritable, was his normal self. He was more embarrassed about weeing and pooing himself during the seizure.

Off we went on a short trip in the ambulance as a precaution, and a frazzled A&E doctor confirmed it had most likely been a febrile convulsion and we were not to worry; we were reassured that they are evidently quite common and he would most likely grow out of them, and may never even have another one. Calpol was the answer, as always, to keep the fever under control.

Round two

Despite the fact that this was confirmed as an innocuous event, Mark and I really struggled to deal with it. It seemed inconceivable that my child could turn blue and almost stop breathing (or so it seemed at the time) for anything other than some sinister underlying reason. We also felt guilty that the actual seizure had obviously happened whilst we were dozing and what we had witnessed was only the aftermath.

We felt reassured after reading up on febrile seizures though — evidently 1 in 30 children with a fever will have one at some point, and usually between the ages of six months and six years; there should be no damaging consequences of the seizures, other than a slightly increased risk of developing epilepsy.

We just prayed it wouldn’t happen again, but unfortunately it did only six months later. This time we witnessed the actual seizure, which was even more horrifying.

I had gone to bed around 10pm, and the boys had been asleep for a few hours. Just as I got into bed I heard Dylan make an awful groaning noise; it was a guttural, animal-like sound which sounded so unnatural.

I screamed for Mark and we ran into Dylan’s room to find him shaking violently with his eyes rolling back in his head. Again I rang an ambulance whilst Mark held Dylan until the convulsions stopped and then proceeded to carry out the cooling down process, despite the fact that Dylan had not, to our knowledge, had a temperature before he went to bed.

Afterwards Dylan vomited and became incredibly lethargic. Two lovely paramedics arrived and confirmed a temperature of 39 after which we swiftly fetched the Calpol. The paramedics put us at ease and reassured us again, and this time we decided it wasn’t necessary to go to hospital.

The thing that scared me so much then though was that Dylan didn’t seem to have a temperature before he went to bed, although the paramedics explained that febrile seizures happen when a temperature rises very suddenly, as had obviously happened.

Rounds three and four

Again we struggled a little afterwards to process it; it is hard to understand how your child’s little body can convulse so violently without breaking or leaving lasting damage of some kind.

Two years later Dylan had not had another seizure, and we had been lulled into a false sense of security. But in October 2018, when Dylan was five, Mark and I were informed by my parents who were looking after him that he had had another one after returning from a morning out and developing a sudden high temperature.

My poor parents had never witnessed this before and I think it was quite a shock to them, but my dad was very calm and did all the right things whilst waiting for an ambulance.

Of course Mark and I rushed home from work, although I think we were both a little less anxious than previously. Again, the paramedics were supportive and helpful, and reassured us once more that it would most likely not happen again, especially as he was now five years old.

We were confused as to why there had been a two year gap between the second and third seizures, as we had thought maybe we were out of the woods. It was quite a shock then when Dylan had his fourth one just two months later, only a few days before Christmas.

He was again cuddling me on the sofa with a fever which had come on quickly. Somehow I just knew it was coming, and sure enough as I sat there on my phone re-reading much perused instructions on what to do during a child’s seizure, Dylan suddenly twisted towards me with his arms outstretched, his eyes vacant, and his body jerking rhythmically.

This seizure seemed particularly violent, but thankfully it was very short. We rang an ambulance, as we had been reassured that we shouldn’t feel bad about doing so, and completed the usual recovery actions.

Frustratingly the ambulance hadn’t arrived after almost two hours, and this time Dylan took a very long time to come round from the deep sleep which has always followed his seizures. We cancelled the ambulance in the end as soon as we realised he was okay and that we could manage this alone.

The future

Dylan is now seven and hasn’t had a febrile seizure since the fourth one in December 2018. We saw a consultant, who reassured us that children don’t usually have them past the age of six. Dylan also had an EEG done to check for any abnormal electrical activity in his brain, but thankfully that was normal.

Mark and I now realise that, although frightening to see, these seizures aren’t harmful and they’re not like epileptic seizures. There’s a small part of us that is still worried about the possibility of an underlying condition though, especially as I’ve read about a link between a history of febrile convulsions and an increased risk of Sudden Unexplained Death in Childhood. And of course there’s the slightly heightened chance of him developing epilepsy. But we can’t dwell on all that too much and Dylan is otherwise a happy and health young boy.

The truth about febrile seizures

Here is what we’ve learnt from this experience, in case it helps anyone else:

1. You’ll realise that you are stronger than you think; you can witness your child struggling to breathe right in front of you and still laugh and smile later the same day.
2. You’ll also gain a new found empathy for parents with epileptic children and be able to imagine the pain of witnessing your child convulse whilst you stand by helplessly.
3. Seizures don’t always look like what you see in films. In Dylan’s case his seizures were much more physically violent than anything I’d seen on TV.
4. You can carry that unwelcome knowledge of an increased risk of your child developing epilepsy or dying suddenly, but still go about your normal lives somehow.

Mark and I have felt quite alone in this experience though; nobody I know has gone through it. Although of course I wouldn’t wish it on anyone I would love to hear from other parents who have experienced it, as it’s always reassuring to know you’re not alone.

For now though we feel a bit more confident about dealing with it if it does happen again. It will still be terrifying I’m sure, but we’ll get through it.