Parents of kids with recurrent febrile seizures, how did things develop?

[MillennialParent]

Hi all, hoping to hear from parents who’ve been through something similar.

Our little boy is 20 months and has had several seizures since he was under 1.

They’ve generally been around 2 minutes, involving both sides, and he recovers pretty quickly and is completely himself afterwards. He’s developing really well with no concerns there.

Doctors still think they’re febrile seizures and they’ve generally happened around viral illnesses, although he hasn’t always had a significant fever. With the most recent one, he seemed well beforehand and the viral symptoms only really appeared after the seizure.

For anyone whose child had a similar pattern at this age, how did things develop?

How many seizures did they end up having? Did they gradually become less frequent or suddenly stop? At what age did they grow out of them?

And equally, did anyone start off with what seemed like febrile seizures but later get diagnosed with epilepsy? If so, what changed that made doctors reconsider?

Not looking for medical advice, just really interested in hearing experiences from parents who’ve been through something similar.

My ds had them frequently from around 10 months to 2.5 yo and by 3 they had stopped completely. His were very long (5 to 10 mins sometimes) so we saw a neurologist to be sure there was nothing else going on. She said it's linked to how quickly his temperature rises rather than how high the temperature goes. She was right that DS would grow out of it as he got bigger.

No indications of any ongoing effects and he's over 10 now.

Two of mine had them. Apparently DH and his brother both did too, so quite a strong family history. DC1 had 2 within 24 hours at 18 months, which is apparently considered one. DC2 had 3 in the course of 2 years that sound similar to your DS and on at least one occasion they had the convulsion before it was apparent they were ill - the symptoms came on afterwards. Because we were in NYC at the time, with a very careful paediatrician, DC2 had an eeg, which was normal.

Like @HateThese4Leggedbeasts, my understanding is that it's not the temperature itself that's a trigger, but the speed of the rise. We became very adept at keeping their fevers down, alternating Calpol and nurofen every 4 hours and tepid baths.

They're 26 and 30 now, one went to Oxbridge, one to an Ivy League, no epilepsy and no apparent long-term effects. On them, anyway - DH and I will never forget how absolutely terrifying the first one was.

Hope your little one is ok!

Thank you so much for sharing your experience with this. We are hopeful he grows out of it!

Thank you for sharing. Glad to hear there were no long term effects. In the thick of it all and trying to get any reassurance there is no long term epilepsy, but it's a bit challenging when doctors have to share all the possibilities not just the most likely one.

My DD has recurring UTIs for years and had several febrile convulsions over 18 months. Like a PP we became very good at managing temperatures, clock watching doses and a lot of bath playtime. She's now 25, in a graduate job and has just turned down a promotion because "I was really looking for north of £40k mum".

It's scary while you're in the throes of it. I remember those times well.

Thank you for sharing I'm glad she's doing well.