Febrile convulsions

[Malfollie]

Hi, I’m trying to reach out to people who have had a little one who has had febrile convulsions. My little girl was 1 on the 31st of May. She had her first febrile convulsion on the 24th of May. It lasted 7 minutes and she stopped breathing I think that was partially my fault I totally panicked and laid her on her back. The second one happened this Tuesday the 28th of June. This time she was fitting for 50 minutes on and off and ended up having diazepam and lorazepam in hospital to stop the seizures. Both times they have said it “happens” in some children. Im a total nervous wreck, is this going to happen every time she is poorly? The first time her temp was 39.6 but this time it was only 38 so no real pattern? She has had floppy episodes with a temp before this but not a full seizure. I am probably looking for answers or reassurance but I would love to hear from anyone who has had this and how long it takes to grow out of it and how often is normal? She has been referred to a seizure clinic x

She may well grow out of it, so try not to worry too much. (I know that's not easy.)
Just hold tight and see what they say at the clinic.
I've no direct experience of febrile convulsions, but my DNeice would hold her breath when she hurt herself and then pass out. She's in her thirties now, and there are no lasting ill effects.

It sounds like your experience was more severe, but my dh, dB and ds all had a couple when they were toddlers. All grew out of it.
With ds he only had one, didn't pass out for long and was given the all clear at the hospital and out the next day.
Afterwards I was terrified of him having a high temperature and carried around those little calpol sachets for years.
He just grew out of it.

Unfortunately they are quite common but nevertheless frightening to experience and witness. My DD had two episodes in one day but thankfully the second one happened whilst in the hospital so the doctors were able to diagnose straightaway. There were no lasting effects and it was just a case of getting her temperature down. Strangely you only ever hear about how common it is when you relay the story of it happening to your child to someone else.

Not febrile seizures but my eldest had her first seizure at 18 months old- she was referred to the seizure clinic at 22 months when she had two more in the space of a week. Because she didn’t have a temp/ was healthy- she was referred for an eeg and an mri- the eeg confirmed she has focal epilepsy, the mri showed no reason for it ie. No tumours nothing sinister. They hope she may still grow out of it, I have my doubts- she’s on daily medication but otherwise normal, healthy and thriving (soon to be 5).
I would say the seizure clinic/ specialists are amazing. It also astounded me how long children/ people can seizure without causing damage, looks way worse as a parent than how it is. Good luck

My DS (and generations of my mothers side of the family) had GEFS+ .
On the mild side it meant they had febrile convulsions until puberty and a lot more than normal. I think GEFS+ hadnt even been discovered until my DS had his last FC.
My DS is 26 now and had over 20 fc usually when his temperature was 39. He had his last one at 13 when he had pneumonia. It is very rare to have FC over the age of 5 and most children wont have a 2nd FC anyway
My DD 24 had 4 at the age of 3 and between them they managed to have 4 in 2 weeks.

Think my sister was 10 when she had her last FC and my mum was about same age i think. It never really affected them in anyway

We were given Diazipam in case it went over 5 minutes and to call an ambulance if over 10

There is a brilliant quote from Toddler Taming by Christopher Green which got me through
"The short fever fit rarely harms the child, just its mothers nerves"

I wonder if Toddler Taming is still in print? It was very comforting when mine were little, but I imagine some of the advice is rather out of date.

Toddler Taming used to make me laugh and i loved the illustrations. I dont think it was ever very popular on MN but i liked it, very basic common sense.

Thank you everyone for your replies. That quote is very true she is absolutely fine now happy as Larry like nothing has happened unlike me 😂
Hopefully it is just unlucky they were so close together and it won't happen again. Only time will tell, hopefully it won't be a long wait for the seizure clinic.

Hi, my son had his first febrile convulsion on 16/03/2022, aged 13 months. He’s had a further 14 since then 😢💔. He even managed to go 12 weeks without any so technically he’s had 15 in a 3 month period, I know you can’t count that in like ‘the real world’.

They’re the most awful thing to witness

You poor thing, I know exactly how you feel - febrile convulsions are petrifying to witness!! It doesn’t matter how many people tell you they’re harmless, it’s still horrendous to watch your little one go through it.

We have actually had a very similar experience to you - my child had a prolonged fit that lasted around an hour (they were 13 months at the time) and then had 2 fits in the same day on another occasion when they were 3. They are now 7 and have had no further episodes thank god.

In both cases they were triggered by tonsillitis, although the fit was literally the first symptom so at the time they seemed to come out of the blue, it was only later that day once we were at hospital that other symptoms started to show and the cause could be found. Obviously they did have a high temp that triggered the fit but it must have come on so fast on both occasions as we had no idea!!

Like you I was worried that every illness would trigger an episode and spent years getting up in the night and checking temp, even when they were perfectly healthy. It’s the not knowing and the anticipation that is just the worst, I honestly don’t know how you can avoid feeling like that, but if it helps my son was ill loads of times with a really high temp and didn’t have a fit! Each time we got through an illness without one I felt a little less anxious, but even now minor illnesses put me on high alert and I am very quick to administer Calpol/Nurofen as soon as they start to feel a bit warm! (doctors believe that medication actually doesn’t prevent fits, but it makes me feel a bit better and more in control if I can actively manage his temp).

@lillyrabbit It is the temperature shooting up that causes the fit rather than a high temperature..
WIth both my dc and my dsis the first sign they were ill was a fc

Hi, my son has just turned 3 and he’s had 12 febrile seizures. The first one was when he was 13 months old. Most of them last between 3-8 minutes but he had a terrifyingly long one last weekend… it lasted over an hour and when we arrived at the hospital the anaesthetists were controlling his breathing, which was so upsetting. We carry buccal midazolam everywhere with us, but as he was vomiting on this occasion, it didn’t work. This has now terrified me for future seizures 😭.. so I can completely empathise with y how you’re feeling. It’s awful! The only positive is, at least we know it’s not forever 🤞🏼Xx

Hi my daughter is 6 months old and has had 2 febrile convulsions, well that’s what we think they are, we are waiting for dates to get scans ect done, her temp was 38.4 the first time, I had just taking her for her 16weeks jags that day and the 2nd time her temp was 38 and it turned out she had covid, both times she showed no signs of being unwell and had these seizures at night during sleep, both between 12 & 1am! It’s such a scary thing to watch, Iv been on edge from the first one, they were 5 weeks apart! my lil one’s heart stopped the 2nd time, thankfully she was in a&e when this happened, i havnt heard of anyone’s lil one being as young as mine which is scary for me! Both her seizures lasted over 30mins and it took her a few hours to come around with the help of oxygen and antibiotics!