Febrile seizures are not something I had heard of before my five year old Dylan had his first one at the age of two. He had had a temperature overnight and I, my husband Mark and Dylan were dozing on the sofa the following afternoon after a sleepless night. I suddenly woke to the sound of my husband calling either mine or Dylan’s name (I can’t remember which) in a frantic manner. 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 ran 999 in a panic Mark lay him in the recovery position on the floor and instinctively tried to bring down his temperature, assuming it was something to do with that, 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 remember crying on the phone, saying he wasn’t breathing (even though he was, albeit unconvincingly), whilst Mark calmly spoke to Dylan to let him know 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 most likely 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. So 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 it is 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.
Despite the fact that this was confirmed as a seemingly innocuous event, Mark and I really struggled to deal with it. For me, 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 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 an odd, guttural, animal-like sound which I instantly knew meant something wasn’t right. 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 we had no knowledge of Dylan having even the slightest 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, and this time we decided it wasn’t necessary to go to hospital.
The main thing that scared me so much this time 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 with him.
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 it breaking apart or leaving lasting damage of some kind. Two years later Dylan had not had another seizure, until in October 2018 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 had been 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 last 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 and his body jerking rhythmically while his eyes looked at me vacantly. 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 follows the seizures. We cancelled the ambulance in the end as soon as we realised he was ok and we could manage this alone.
Mark and I now realise that, although frightening to see, these seizures are not harmful and they are not like epileptic seizures; there is a small part of us that is still worried about the possibility of an underlying condition, given the amount of seizures Dylan has had and the fact he will be six this May, and with the last one happening only a month ago. We don’t wish to be dramatic or try to wrap Dylan in cotton wool, but we are his parents and we have to make sure he is ok, always, so we were glad to recently obtain a referral to a consultant (although this is a few months away). The worry that will not leave me is the increased risk of epilepsy, which we are trying (perhaps in vain) to preempt, and the statistics which say that only 1 in 3 children who have had a febrile convulsion with have more than one.
We have felt a little alone in this experience; nobody I know has gone through it, except one or two people whose friend’s kid may have had a temperature-related seizure at some point. Although of course I don’t wish it on anyone I would love to hear from other parents who have experienced it, as it is always reassuring to know you aren’t alone. For now though we feel a bit more confident about dealing with it if it happens again, as do his grandparents I think. You also realise that you are stronger than you think; you can witness your child looking as if they are dying right in front of you and still laugh and smile later the same day.