Febrile seizure/convulsion advice

[SparkleTea]

Hi,

Just wanted a bit of advice really, Monday evening my 9 month old ds had a febrile convulsion. I thought he was choking at first had to get an ambulance out to him and I honestly thought I was losing him. To say I'm already an anxious person is an understatement and at the moment I don't know how to move forward from this.

We were in hospital until the next day then we had to go back up later that night as he was diagnosed with tonsillitis and could hardly swallow his saliva. We are back at home now - he is almost back to his normal self.

I haven't slept at night at all I have been napping in the day when my husband is watching him. How am I meant to sleep knowing that he could have another one and I won't be there to help?

Those of you with children who have had these the next time they have a temp or are ill do you stay awake all night? Do you ensure that they are in your bed or room? Do you go up to the doctors or A & E when they spike a temp to find the underlying infection to quicken up the recovery process and hopefully stop a convulsion? He has had fevers before with his vaccinations but nothing like this ever happened. I have a 6 year old who brings back all sorts of illnesses from school, I don't want my anxiety rubbing off on him but how do I keep him safe?

Do any of you use an owlet monitor or a mattress monitor to detect a seizure. I realise there are always people worse off I know I will come off as over dramatic but I can't stop thinking about it and I don't know how to be normal at the moment. I have hardly eaten and just constantly feel sick.

Apologies that this post is scattered and a bit all over the place. If anyone has any advice or things that worked for them please let me know.

My dd had one once, they're brought on ny v high temps usually. Don't need to do anything dont need a&e either. I cosleep when mine are ill, try jeep temp down and don't panic. Ypu don't need to detect a seizure as no epilepsy, just a febrile seizure hopefully never had another.

Most children who have a febrile seizure don't have another.

There is nothing you can do to stop another one - medications do not stop them happening.

https://www.nhs.uk/conditions/febrile-seizures/

This might help.

My LO had one at 8 wks old. It was a complete one off, but it scared the shit out of me. They were very prone to high fevers.

One thing I learnt very early on was not to cool them down too rapidly by stripping/opening windows as this would cause shivering, resulting in their body overworking to heat back up and an even higher fever. I used to do it very gradually.

I emphasise totally with the worry, but it probably will be a one off occasion. Please try not to dwell on it. I did keep night vigils and coslept, once they were big enough with alarms set to check every 2-3 hours, and did consider a monitor, but decided, for me personally it would feed the anxiety further.

Allowing for night doses of Calpol/ibuprofen to see us thro the witching hours for assurance helped, plus giving fluids if possible. Little Baby Bum saw us thro many croup episodes. Always trust your instincts and call on help if you need to 💐

I’ve just posted a really similar thread to yours as hadn’t seen this one. I could have written this myself though, my little boy also had one on Monday and we stayed over in hospital too.

I haven’t really come across any practical advice as such yet but just wanted to say I know exactly how you feel, it’s a horrendous thing to witness and you feel so helpless.

We have been told we will have a follow up app with an epilepsy nurse (they made it quite clear they’re not suggesting this is what he has) as my little boy had what is classed as a complex seizure so they said the nurse should be able to answer any questions we have. Maybe you could ask if this is an option for you too to try and relieve your anxiety a little?

I totally get what you mean about overnight being the most worrying time as this is the time I struggle the most too. I’ve spoken on another forum to someone whose child is epileptic and they said the Owlet monitor eased their anxiety a little.

sending you a huge hug 💐

My child had quite a few when we she had a very high temperature and they stopped when she was about 5. Now 18 and not returned.

I agree they are really scary to watch but I didn't find out anythjng you can do.

I think the main thing is to make everyone aware that looks after your child that they are susceptible to them so they are able to tell emergency services etc...

Sorry to answer your questions sometimes yes I did sleep in the same room as my child when they were ill and I always took to A and E.

It’s thought they occur at the speed of a temperature changing rather than a high temperature itself. And there is nothing you can do to prevent it, so giving calpol won’t prevent it. It’s a scary thing to witness.

I have to be honest I don’t sleep in with my kids when they’re ill and I’ve never taken them to a&e with a temperature but then I’m also a children’s nurse so it’s not something I panic over. Remember that the number on a thermometer isn’t an indicator of how ill a child is and to give calpol/nurofen for pain and being unsettled/feeling grotty rather than the sole aim of lowering a temperature.

Forgot to say that obviously get them checked if you’re worried!

No personal experience of this but I was talking to one of my colleagues at work about his scariest moment as a parent and that was when his toddler had a febrile seizure. Said toddler is now looking for a university to go to but even so my colleague goes right back that moment when hears a thud.
It's ok to be panicked today and tomorrow and the next time they are ill and probably the time after that but you will reach a time where they can be ill without fear.

My daughter has a reflux and she went through a period of choking soon after going to sleep. I can't tell you how long it went on for and for how long I stayed awake nervously waiting for her to choke. Or even when I felt ok to start sleeping normally again but I did and a do.

My daughter spikes incredibly high temperatures of 40 so I’m always terrified of febrile convulsions. I used to use a breathing monitor but still not sleep very much. Now she’s too big for one I just sleep ( lie next to her that is) with her when she has a fever. Horrible when kids are ill. Hope he’s ok

Thank you all so much for your advice and just hearing your stories. I feel better with your assurances on how scary it was as I feel like I should just get over it, I will just need to take each illness as it comes.
I can honestly say I have never been more scared in my life.
I'm hoping it is a one off, unfortunately my husband had a few when he was younger so I am anticipating more.

@MrsB902 Sending you a huge hug back, I hope your little man is okay and everything works out for you all.

He seems a lot better today thank you, still not back to normal but I'm just glad he is on the mend. Thank you all again.

@SparkleTea I’ve just seen your post and honestly, if I wrote down my experience and my feelings, it would be word for work what you wrote.

my 13month old DS just had a seizure and it’s shaken me to my core. We were already in A&E as he was very short of breath and had a temp. Diagnosed with croup and bronchitis and while waiting to be seen, he had a seizure in the waiting room. The single most terrifying experience of my entire life.

my baseline is highly anxious, so I’m not sure how I’ll ever relax again when it comes to DS (I know how dramatic that sounds).

How is your DS now? I really hope he hasn’t had another seizure. And how have you been able to manage your anxiety?

My son had 3 convulsions, 2 were very bad (ended up in hospital as he didn't wake up). He had the last one at the age of 5. Doctors were never concerned, he had annual check ups with the neurologist until he was 7 and all the tests were OK in spite of how scary it was. Most kids only have them once (I had one as a kid, when I was 2).
After the first one, whenever he had a temperature I stayed awake all night monitoring him. He was ill very often so I ended up exhausted. From our experience I can tell you, there is nothing you can do to prevent them. He had temps of 40 C and nothing happened, and he had a temp of 37.5 C and had one. They said it all depends on the type of virus and how the body reacts to it.
I know it's hard but try to take it easy. If it happens, take a deep breath, act (did he get medication to stop them?) and call a doctor if it doesn't get better after a few seconds. I'm sure you have all the instructions from the doctor to react accordingly.

Hang in there! You need to adapt your life to the situation a little bit, like traveling with meds, controlling the fever, etc... like all parents do. Febrile seizures are very common and most inoffensive, and they don't remember anything. My son doesn't even remember the last one, he only remembers the hospital stay as it happened in Croatia and nobody spoke English :)

OP I totally empathise. My eldest two DC had them and they are terrifying. DH in particular is now over anxious anytime any of our DC get a temp(which is right now for DC3 as it happens ). For us it's like sky high temperatures are my children's party pieces they get unwell and always get mad temperatures so that might be something that will happens with your DS. Luckily they only ever had one febrile convulsion each. There is nothing you can do to prevent the seizures I believe and I know advice has changed in the ten years since we first experienced them but what helps us to relax is to always have a good stock of paracetamol and ibuprofen for the DC and for younger DC we always had suppositories in the house as they are great if the temp is very high and they won't vomit it straight back up .

Thank you so much @Mandarina4 thats very reassuring. I have now stocked his baby bag with calpol and ibuprofen. Apart from a temperature after his imms one time, DS has never really had a temperature so time will tell whether this is a one off or not.
the doctors honestly weren’t concerned but very helpfully answered all my questions before we were discharged. They didn’t give any meds as they said his convulsion was “normal and what we’d want to see” but advised us to video and time it if it happens again and call an ambulance or bring him to A&E

Thank you @SparkyBlue thst’s a great suggestion to have suppositories. That’s what they used in hospital after he’d recovered as his temp was still sky high. I’d never have thought to buy some myself but you’re right, if he’s committing they’ll be super handy to have.

I really hope your DC3 is better soon!

Hopefully soon you can calm down and get a grip on your health anxiety. They are very common and most don't have a 2nd.

@HavingFaith honestly the suppositories are amazing especially with a sick cranky baby or toddler who won't co operate with medicine and you are feeling panicked if they have spat it out and not sure if you should give more especially with high temps they might retch or vomit anyway so this way you know they've gotten some medicine . @Oblomov23 it's not helpful to tell OP to get a grip it's a frightening thing to happen to a parent and im absolutely not over anxious by any means but it left me fairly stressed for a while afterwards as they came come out of nowhere

@SparkyBlue

Please don't misquote me. There's a difference between telling someone to "get a grip, mate" and that they need to 'get a grip on their MH'.

And yes, I've experienced a febrile convulsion with ds1 many years ago, and it's scary, not pleasant. But we are all trying to calm OP down, and give her some information and statistics on how common they are, so that she can gain perspective.

Hi OP, bit late to the party but just wanted to say that you should not feel that you are overdramatic at all. My DD had not one, but 4 febrile convulsions during 1 illness episode about half a year ago and ended up being given lorazepam to as they put it "break the cycle". We were sleeping when the first occurred and as you I thought she was chocking. As you, I know there are worse things out there, but the week we spent in hospital due to these was hand on heart the most horrific of my life - and I thought I had seen some shit. If it makes you feel better I am not normally an anxious person but this made me feel like my world was crashing around me and I was so scared we would lose her that I simply could not function. She got better but once we were out of the hospital I think that for the first month I would take her temp every hour - i took her temp so often she now knows how to do it herself, and she's not even 2 yet. Personally, I feel like the anxiety/fear has not eased but I have learned how to cope better - this was helped by putting a plan in place with her nursery, always having a good stock of medicine at home, always having a hospital bag ready, always having my phone in my hand/pocket and always having it charged, she is not left alone for more than a few seconds (i have looked into seizure detecting monitors and bracelets but eventually kind of settled with just never leaving her alone as this way I am not worried I might have missed something because they are not 100%) and taking her to the doctors at the slightest sign of illness. Now on to more rational things, she has been put under consultant care and he has advised that no amount of calpol will prevent another one and that she should only be supervised more closely when ill until she is 6 + the slight suggestion that I might be missing some marbles. Honestly. I hope your little one will not have another and that you have started to feel a bit more at ease since you've made the post. You will sleep again - just maybe not as deeply but more like a rabbit, with one eye open.

Thank you for all of your messages and posts. I do feel more calm and have managed to somewhat sleep. The household has been struck with covid over the last few weeks so temperature has been an issue. We co-slept, kept monitoring temp, made sure to have calpol and ibuprofen on hand. I know it won't happen again with every temperature or may not happen again at all. But I do feel better prepared now. Also, thank you for putting it into perspective it was all very fresh and it really was traumatic but hearing your stories have helped immensely.
Thank you!