Recurring Febrile Seizures(?)

[Wonderingandworrying]

Hello,

Looking for advice or to see if anyone has experienced similar.

A few months ago, my DD (age almost 11 months at the time) had a very typical febrile seizure. She had an ear infection that had raised her temperature to 39.9 Celsius and the seizure was tonic clonic and lasted no more than 5 minutes. As it was her first seizure we were blue lighted to A&E where we were discharged a few hours later. Fast forward to later on that day, she had a second seizure. This time we were admitted to the assessment unit as it was now classed as “complex” due to 2 occurrences in less than 24hrs. Anyway, stayed over night and were discharged the next day as again, it was coinciding with her ear infection and as I was a febrile convulser also, it was decided it was definitely that and nothing more sinister.

Since then, she has gone on to have a further 6 seizures. In appearance all have been exactly the same, (other than lasting no more than 3 minutes vs the original 5) the only difference being that she has not been febrile for the most recent 2. The first time this happened her temperature was only 37.5 Celsius, which I actually had put down to a dodgy thermometer at her nursery. But today, when she had seizure number 8, it was only 36.9!

She does seem to always have an illness, either active or lingering when they occur - so again does fall inline with FS. But doesn’t 8 over 2.5 months seem a lot?!

During today’s seizure, she must have bit her lip/tongue/cheek and there was a lot of blood which made it even more traumatic and scary. After the seizures she recovers well, no longer than 30mins of being a little sleepy before she’s back to her usual self.

After todays episode we have now been referred to First Seizure clinic so hoping to get some answers.

Not really sure what I’m hoping to get from this post, maybe someone out there has had experience of this many seizures in a small space of time and it was febrile seizures?!

Sorry for such a long post! Thanks for reading ❤️

Sorry no advice here but just to say my 2 year old had one last week and it’s so scary, I’m so sorry you’re going through this. Based on what the paramedic said to us about what to expect in the future etc this doesn’t sound like typical febrile seizures at all for your daughter. He did say it can be a sign of epilepsy to come - I hope you get the answers you need and that your little girl is okay!

So sorry to hear about your little one. They are absolutely terrifying aren’t they! Up until this point, they hadn’t been too concerned. This is her first winter in childcare and they said she has just been unlucky with the number of infections she is catching and the number of them that are raising her temperature. A constant worry these babies are, aren’t they! Thanks for replying!

Sorry to hear about your little one. It must have been very scary.

I went through something similar with my daughter however they were cause by fevers related to urine infections. She had a condition which caused her to get them frequently. As she got them more frequently I did notice her temperature threshold for getting them lowered if that helps. She was also referred to the epilepsy clinic but nothing was found. Did you get a prescription for anything in case they last longer?

As she got older and the infections became better controlled she did out grow them.

However last summer she started developing symptoms of absent seizures and was today diagnosed with epilepsy proving that febrile seizures can be an indicator however many more children experience them and out grow them.

@CheeseToasty thank you so much for your reply! That’s really interesting and helpful.

They actually think it’s a UTI that is causing this bout of illness. Since my post she has had a further 3 seizures and we were admitted yesterday.

She is getting an ultrasound later today to check her kidneys.

Hope you’re wee girl gets on OK with her new diagnosis!

I think if a child has had one febrile convulsion, they're more likely to have another. There is a genetic tendency too.

My dm has a friend whose dc has had one almost every time he's ill, it's caused a lot of worries, but he now hadn't had one for about a year, so they're hoping he's growing out of it.

Hi there. I know your post was in January, but I just wanted to get in touch because I’m having a similar experience and finding it hard. My child is a bit older than your daughter, but we’ve had 7 of these now in 6 months. At first they were typical febriles, albeit long at circa 10 mins. However, since then they haven’t always occurred with a temperature at all, albeit he’s always unwell with some bug or other. Could I ask where you’re up to with it all? I hope your daughter is doing well ❤tia

Hi there! She is now up to 25 seizures since November 1st 😅 Sorry to hear about your son! Have you been prescribed rescue medication for the prolonged seizures? After 2 7 minute seizures and 1 16 minute seizure we have buccal midazolam at home. It is so, so scary! Do his temperatures rise after he’s had the seizure? We are waiting on genetic results but still sticking with the atypical febrile seizures diagnosis as she is under 6 and does always have a fever. Have you been for any other tests, EEG/genetics etc? Xx

Thanks for replying so quickly! Although I’m sorry you’ve had so many 😢 that’s just horrible for you! We sound pretty similar in many ways! My little boy is only 3 so they’re also being classed as afebrile, and we also have midazolam at home due to the length of them! We’ve had an ecg, wake and sleep eegs … all has come back completely normal. He is always unwell but I find myself weirdly wishing he had a temperature when they happen as it would be more predictable! I have only recently discovered that sometimes the temp can come afterwards… he almost always has a higher than normal temp sometime before or after but often it’s not as high as 38! Have they mentioned GEFS+ to you? We’ve also just done genetic testing, although we don’t really have any known family history. Can I ask how your little girl’s seizures present? Are they always the same? And are they generalised or ever focal? I’m so sorry you’re going through this, but admittedly it’s nice to talk to someone going through the same thing!