15 y/o still getting febrile convulsions (long)

[PlentyOfParsnips]

DS has only had a handful of febrile convulsions, mostly as a toddler, but has never quite grown out of them. He had an EEG in 2005 (age 11) which showed 'an excess of fast activity over the anterior regions. Occasional sharp slow waves are seen over the front-temporal regions with a right-side emphasis. The conclusion was that the EEG supports a liability to have seizures. Further classification is uncertain.' He had one further fit when he was about 13 and is not on any medication.

He's been ill with flu since Thursday and last night came very close to having another fit - temperature shot up very quickly, twitching, glazed eyes and general doppiness. We staved it off by sponging him down and fanning him. He seems generally a lot better this morning - temperature's down, headache's gone but still has a bad cough and sore throat.

so anyway, I have a pile of questions for anybody with similar experience - bruffin, if you're around, I've read a few of your posts and your DS sounds very similar to mine ...

• in case this is swine flu, should I be getting him antivirals or is it a bit too late? (NHS direct and OOH doctors didn't mention it last night but school mentioned it this morning)

• should he be getting yearly flu jabs?

• am I worrying too much about the actual fits? Whenever he's actually had one we've called an ambulance and they've gone into full-on potential-meningitis mode, only to discharge him without treatment. NHS direct said they don't advise sponging down any more because it brings down the temperature 'too quickly' but I'm pretty sure if I hadn't, he'd have fitted. Would it be better to just let the fit happen? What are the risks of bringing down temperature quickly?

• what really worries me is when he leaves home, if this happens when he's on his own (so far, all his fits have happened when he's been in bed, so I'm not so worried about when he's out and about). If this is something that's just going to happen once in a blue moon, I don't want him on permanent medication, but is there something he could be prescribed just for when he has a temperature (we already do the ibuprofen and paracetamol)? How can I best prepare him for handling seizures when I'm not there?

I'd be grateful for any advice on any of this. I'm going to take him to GP once he's no longer an infection risk but would rather go armed with a bit of MN wisdom. Sorry this is a bit long and garbled - I haven't had much sleep.

bump

In my experience, (I have 3 DC who have all had FCs) you can't stop a seizure.

This sounds more like rigors, which can be stopped by lowering the temperature using paracetamol and/or ibuprofen.

Re sponging - It's not that the temperature reduces too quickly. It's not advised because it makes the capillaries in the skin constrict, and heat loss at the skin is prevented.

Hope your DS is feeling better soon.

No, not rigors. My dad had them from malaria. There was no shivering or shaking with DS, more like occasional violent twitches in hands, feet and face muscles. Whenever he's had a fit, these twitches have preceded it.

Thanks for the clarification on sponging down. He's sitting up eating porridge now and says he's feeling a lot better. Hope the high temperature doesn't return this evening.

I see. My dc don't have any warning signs, just go straight into the tonic clonic, that's probably why I've never prevented one.

Must be such a worry that he's still susceptible at 15. I would ask for a referral to a neurologist, especially as the previous eeg was not typical.

Glad to hear that he's up and eating.

Myoclonic jerks - that's what they're called, I remembered. They're like when you jump suddenly when you're falling asleep. When his temperature shoots up, he starts getting these jerks, which is when I start flapping about trying to bring his temp down again. He was getting a lot of them last night - every few seconds for about 20 mins.

I suppose if this does turn out to be something he'll have to live with it's good that he has some sort of warning. Yes, back to the neurologist I think.

It's horrible watching them have a fit isn't it? Are your DC still little enough to get them?

My friend has grand mal epilepsy. She has not allowed epilepsy to rule her life, she is a single mother of 2 and works. She has an aura before a seizure starts so she has time to get her children and herself safe. I'm sure if your DS continues to experience this, he'll find ways of dealing with it. I think it's often worse for a bystander than it for the person having a seizure.

When DS1 had his first, I was terrified to leave the house for months after. DS1 had his last at 4, and is now 8. DD and DS2 are still young enough for FCs but I am far better at dealing with the fear. DD also has absence epilepsy. Pre-meds she was having several hundred absences a day, but thankfully she has been seizure free for about 4 months She has an extremely low seizure threshold, so I'm preparing myself to deal with possible FCs for quite a few years yet.

Hi Parsnips just got your message

DS 15 has been diagnosed with GEFS+. My family have a long family history of febrile convulsions over the age of 6. My sister, my mother and grandmother.
He is 15 now but had his last fc when he was 13.5 when he had pneumonia. Previous to that he was 10.5,8 and about 15 fcs upto the age of 6.
He had EEG and MRI brain scan when he was 9, but they were clear.
Since the last fit he has had a normal EEG which showed some abnormalities on the right side (I think) so he was given a sleep deprived EEG earlier this year, which was clear. We have to been told he may never have another fc and then again he may, they just can't tell. Since Sunday he has had the flu bug and had a temperature of 101 and hasn't had a fit. This is the type of illness that causes him to fit, so I have my fingers crossed that we may have seen the last of them.
My mum and sister had their last one at 10, although my mum says she had a cousin who started having fc when she was 14 until she was 21.

DS tends to have a sudden fit, ie okay one minute or a bit dazed then he has a tonic/clonic seizure for a few minutes. Last time he took at leas half an hour to come round and I think he fitted twice. He was at school and an ambulance was called and I think he started fitting again when they arrived. He was given diazipam. He spent the night in hospital because of the pneumonia.

I know how worrying it is at this age, because they are so independent, when they are the normal age they are nearly always in an adults care.

From what I can gather GEFS+ is quite rare, especially in NT children. Even one of the paediatricians in the hospital was telling me he couldn't possible have had an FC at that age and many gps won't have come across a child that is still having FC's after the age of 6.
GEFS is a new "discovered" syndrome and I have spent many years googling trying to find information about fcs in older children and it was only recently that I came across GEFS+, although thankfully the paediatrician we are seeing at the moment diagnosed it as soon as she heard my family history.

Because he is not having seizures regularly he has not been prescribed any medication, but he is due back to see paed in February for an annual check up.

We just give him paracetamol and or ibroprufen when he has a temperature, to be honest the febrile convulsion is usually the first sign he is ill, so it is not easy to prevent.
I have had the same thoughts as you for flu jabs etc and I did enquire but I can't remember what they said ( I did have swine flu myself at the time and was feeling rotten)
As the last fit happened at school they have have put a note on his records that if he is ill he must not be left alone. I have told him if he feels at all ill he needs to tell someone and he should really carry paracetamol/ibroprufen around with him, but it is easy to forget.
I hope your son is feeling better soon, it's a horrible bug that is around at the moment.

Thanks, bruffin - it's reassuring to know he could still grow out of this. As far as I'm aware, there's no family history for DC except a half-sister on his dad's side who had one FC but within the normal age range. Will phone him tonight and quiz him further and also ask my mum.

Yes, I've been told it couldn't possibly be a FC before too, even though the only time it ever happens is when he's got a soaring temperature. I'm definitely going to go back and get him referred again. TBH, I'm not happy about the myoclonic jerks which he gets fairly frequently. From what I've found out via google (GP is going to hate me ) they're a type of seizure in themselves.

Do you always phone an ambulance when your DC has a fit or do you generally just look after him at home? Hope he's feeling better soon and that he stays seizure-free. There's a lot of this horrible bug about isn't there? I phoned the school this morning and they offered to mark DS down sick for tomorrow too. They said they're 'preparing work packs for them all to pick up on Thursday', which I took to mean there's a lot of DC down with it at the moment.

roomforthree, yes I know I need to let go a bit and just let him get on with it. I feel a bit PSB when I think about what others cope with. At times like this I feel he's still my little baby, even though he towers over me . I'm pleased to hear your DD is now seizure free. That must have been a lot to cope with.

Main thing I recall from FC is that if they are going to have them, it's in the first 24hrs of the temperature. If they have a temp for a week they won't (allegedly) have a FC.
My dd would always, like your son, have a fit and THEN be ill.
Obs I am not sure with the GEFS+ as dd hasn't had one since she was 2
(she does still do the twitchin when she is ill though) - she's nearly 12 now

Its not the rapid drop in temp from sponging that is the problem, but the FC is provoked by a rapid RISE in temp, usually following the rapid cooling!

The NICE guidelines say that anti fever meds will not stop a fit, which is worrying, I think.

Nevertheless I would give the maximum dose of both calpol and nurofen at regular intervals to control the temp and not allow it to become very high, along with physical cooling - clothes/room etc.
Unfortunately they usually have a FC before the other signs of illness occur when their temp rises rapidly but is not immediately obvious.

We don't always call an ambulance, it depends on the situation. Most of the time when he was little we didn't, just took him to the doctors to find out what was wrong and get abs if he had an ear infection etc.
The fit he had when he was 8 was in a macdonalds toilet, scared a poor man to death. He banged his head on the tiled wall and then on the toilet, so an ambulance was called then, but he was sent home after an hour.

The last time he was at school and they called the ambulance, he also banged his head and bloodied his nose. That time they kept him over night and they were quite happy to keep him in for a week if we wanted, but that was because of the pneumonia.
It was confusing even then. The paediatrician we saw in a&e wanted him seen by a nuerologist in 6 weeks, but there was a change over of staff and the new one said it wasn't an fc, even after I told him about family history. It was only because I had to take him back to the gp a month or so later because he was still not really over the pneumonia, that the gp said he should have been seen and we were referred back to the paediatrician again.