Atypical febrile convulsion (no shaking, stopped breathing) - anyone else? And how to deal with anxiety about it happening again?

[LeeMiller]

A couple of nights ago my DS (just 1) had a suspected febrile convulsion following a sudden temperature spike. He didn't shake but went glazed, floppy, unresponsive and seemed to stop breathing (possibly a 'pause' but I'm not sure), so I gave him rescue breaths, he started breathing again and slowly came round once ambulance arrived. It took a couple of hours for him to seem fully himself again. Drs think a febrile convulsion but with atypical presentation is the most likely culprit. His ears are red so an ear infection probably caused the sudden temperature. I had a couple of febrile seizures as a child so was prepared that he might, but always thought they weren't dangerous (just scary) so the breathing thing has freaked me out. Has anyone else's DC had a febrile convulsion without actually convulsing?

It was truly horrendous, I thought he was dead, and although it's early days I just don't know how to cope with the anxiety that it will happen again when I'm asleep or he's with someone else and this time he won't start breathing again. I'm checking his temp obsessively and keeping him dosed up on ibuprofen and calpol. Parents whose DS have had similar, any advice? I was thinking of some kind of breathing monitor so I could sleep but I think he's probably too big, and not sure if they work if you cosleep. I will do another first aid course and ask gp to do one too. But I'm terrified.

I know people don't like to blame vaccines for these things, but was he recently vaccinated? I coincidentally came across a story on youtube of a grandmother who had to resuscitate her grandson a day or two post vaccine after his mum found him unresponsive. I think they did then use a breathing monitor.
Dd had random temp spikes for many months after her pre-school boosters and developed tics, but thankfully no seizures.

My son got these, always linked to a very high temp. We wouldnt know he was particularly unwell and then he would have a seizure. We would then find out he had an ear infection/UTI etc
He would go rigid and his eyes would roll but no fitting. He would also stop breathing, very scary.
We were always told to call an ambulance because of how long he used to stop breathing.
They had us under the epilepsy clinic for a bit because his symptoms were so different.
He's 5 now and hasnt had one in over 2 years. Hopefully your little one grows out of them soon too, they're very scary

Oh and the advice we were given, he will always start breathing and he always did. Drs weren't that concerned to be honest, which says something

Have you had a debrief with the doctor/hospital? If they could explain to you the chances of it happening again, might that help? I would try one of those under mattress breathing sensors, they are less reliable once children are mobile but you could give it a try. I had one and found it very good.

It's terrifying isn't it. My DS1 had this at around 18 months, he did feel hot before hand but he had had temps in the past. My ds didn't shake either & glazed over, unresponsive, went floppy & turned a little blue. I had never heard of a febrile seizure before so thought it was dying. I didn't sleep for the first few nights & moved him back into our room where I would set the alarm every hour or so to check on him which obviously meant I was exhausted. The hospital told me to call the ambulance straight away if it happened again & they arrived within minutes of me calling the first time so that was some reassurance. Honestly it was just time.

That must have been really scary for you, I'm not surprised you're anxious about it happening again. Maybe make an appointment with your GP to chat it through?

Also maybe one of these would help?

owletbabycare.co.uk/pages/smart-sock-2

@getupnow same here, called an ambulance twice now, arrived within 4 minutes both times.
If you call and say a child isnt breathing I think you become the highest priority.
One of the times I had a paramedic on a bike there in about 2 minutes, was remarkable and I was wo so grateful

Thanks so much for your comments. It really helps to know other DC have had similar. I know they say FC are scary rather than dangerous but I honestly thought he'd died so it's hard to relax. It's good to hear they will always start breathing insane, drs said I did the right thing to give the rescue breaths but I would like some clearer info on how long to wait.

7 paramedics were with us in a few minutes which was amazing. And yes the drs seemed relatively unconcerned but said to always call an ambulance if in doubt. I will take him to his doctor later this week for a check up to see if infection has gone, and a chat.

We cosleep which complicates the sensor thing but the sock could possibly be an option for when he's asleep and I want to leave the room. He is too wiggly for a mat.

Reading up about this as it happened for the first time yesterday. My 10 month old was in the back of a taxi with me, sat on my lap, on the way back from the doctors (due to fever) when his eyes rolled and he went limp. He didn’t shake at all, but went glazed eyed, floppy, and seemed to stop breathing. His whole face went blue and I honestly thought he was dead. I screamed for the taxi to call 999 as I just knew something wasn’t right. I then flung open my door and called to help from strangers. He was just limp on the back seat of the taxi, blue, unresponsive, with a fixed glazed stare at the ceiling. I preformed rescue breaths on him in a panic without even knowing what they are (this was just my attempt at cpr). These seemed to do something because he stirred slightly. Luckily a PCSO was near by and ran to my aid until ambulance arrived. They stripped him down, washed him with water, put him into recovery position, and tried to clear his airways.

medical team diagnosed febrile convulsion and passed it off as something quite common and not to be feared. We were discharged from A&E later that night after cause of fever was detected. I left feeling ferry confused because he never once shook and I had to preform rescue breaths to effectively resuscitate him.

very reassuring to hear other mums experience similar atypical symptoms. My heart goes out to you all. This was by far the scariest moment of my life.

I’m so sorry to hear you had a similar experience Leonorfini (great user name), it’s totally understandable you are anxious and upset and it will probably take you are lot longer to recover from than DS. My mum is over 70 and still says my first convulsion was the scariest moment in her life. I still get anxious about fc when my DS is ill but he hasn’t had another episode despite having high temperatures multiple times so it might have been a one-off.

It sounds like you reacted calmly enough and quickly to do everything right for your DS so you should feel proud of yourself, and the medics were there very fast too. I found it helpful to focus on those things. Also, as pp have stated, the doctors never seemed very concerned about DS and that was reassuring. They all seemed confident that his breathing would have started again on its own (or that he was still breathing but almost undetectably) and that the rescue breaths were probably just coincidence. When I talked to friends I came across other kids who had gone limp rather than shaken with fc so I think it’s atypical but perhaps not that uncommon.

DS’s convulsion was in England but we live in Italy where there is a really medicalised culture and they wouldn’t have hesitated to refer or do further testing if they didn’t think it was a fc. Initially we were prescribed diazepam here to administer in case of another episode but our latest paediatrician feels it’s not necessary. I think the guidance in the U.K. is different but it’s perhaps given if there are multiple/complex episodes. I found it helpful to chat through it all with the paediatrician so if it happened again I knew exactly what to do and at which point to call an ambulance etc.