Seizure and school advice please

[Dontsayyouloveme]

My young teen had a seizure for the first time 3 weeks ago. I told school and they’ve said he needs to be collected from school and not use the school bus as he did before this happened. He may never have another seizure but at the same time he could have one at any time. Whilst I’m trying everything I can to keep him safe, I’m not sure how long my work will let me dip out for 50 mins mid-afternoon to collect him. any suggestions as to how he can use the bus safely would be much appreciated. Surely the school can alert the bus driver to this? Surely a bus driver is trained in first aid. The journey is literally 20 mins

It's potentially trickier to ensure support is in place as he doesn't have a diagnosis, if he did there are obligations of LAs as well as schools I'm not sure if they'll extend. If it's just the driver and there aren't arrangements for another adult to be on the transport then there's the risk the driver won't notice, and if they are notified they would have to pull the vehicle over when safe to provide first aid which can mean this help is delayed, it's also not great for the other children- some transport providers have stipulations around stuff like this, however with a formal diagnosis the LA should fund alternative transport ie a taxi (this varies though area to area).

Does he have a care plan in place? I'd start with the school nurse if this hasn't already been done.

This is ridiculous.
My teen Dd has had the same thing happen to her. She has since been diagnosed with epilepsy and is medicated but her seizures are not yet controlled.
What reasons have school given for this? Is the bus run by school (unusual) or is it a public bus or a school bus provided by the LA?
I can’t believe they can legally insist on this. One seizure is not a reason to stop living life.
I am sorry this has happened to your son. I know exactly how you feel. It was the hardest thing that has happened to me (so far!). I hope it was a one off for him.

Well I spoke to school and they said they’d call me if it happens again and only call ambulance if a seizure lasts longer than 5 mins. Is that a ‘care plan’ ? Sorry, this is all new to me 💔

So, legally, they can't insist on this. Ds has epilepsy and we've had to put things in place via a care plan. Schools often hear seizures/epilepsy and panic!

It's no reason not to live your life, particularly after only one seizure and no diagnosis.

Who operates the bus?

I feel it’s ridiculous too… it’s not sustainable u til another seizure, if there is one! He’s 13… he wants his independence! The reason they gave is ‘you don’t want him having a seizure on the bus’….. I don’t want him having a bloody seizure anywhere!! It’s a school bus provided by LA. Could I PM you this evening (heading out now).. I’m struggling g with all of this so much.. no one IRL understands why I’m so anxious and so scared for him.. ? No pressure if not. 😊

Can I ask what type of seizure he had? As for a care plan they are usually issued via the epilepsy team after diagnosis. I'm assuming school have put their own misguided plan in place.

I didn’t see his seizure.. it was in his sleep… but from previous experience of epilepsy in a job.. I think it was a ‘partial focal’ turning into tonic clinic.. he said he had tingling in his left cheek and tried to shout me but couldn’t, then went into the fit. When he came round his left side was droopy for a few seconds and then was sick for four hours until hospital gave him anti sickness meds.. his legs were sore for few days after.. tbh I can’t see this being a one off.. 🥺🥺

It’s the LA..

It's a terrifying experience, it really is! It may be the only one but if it's not don't panic. People can live mostly normal lives with epilepsy.

I'd be very concerned about the 5 minutes before calling an ambulance. He isn't diagnosed and it would be helpful for medical staff to witness a seizure if he does have another. School aren't trained for this. Who is it who told you this? As for the la bus they can't enforce this at all, particularly after one seizure. If a care plan was in place via the epilepsy team they may in some circumstances recommend he doesn't get the bus but the la would need to make other arrangements as it's a medical need.

Honestly when I got to him in his room… he was breathing but unresponsive.. I didn’t stop crying for two weeks! I’m a nervous wreck still.. I got a baby monitor.. an anti suffocation pillow.. I’m on edge all the time he’s with me.. I can’t even think about how the future looks at the moment 😞😞.

It was the Year 9 Head who I spoke to.. so when do you recommend they call an ambulance? I know you obvs do after first one (i would have had to have waited over an hour fir one 🥺) I thought it was 4 mins if they haven’t ’come Round’

I can’t actually believe schools arent trained in epilepsy! 😣

Of course.
I’m afraid I don’t know exactly where you stand as far as the bus goes. My Dds school have absolutely incredible and have worked hard to make sure she doesn’t miss out on anything. I would be fighting it though. It’s nonsense.

That doesn't sound like a good plan, ask to speak with the school nurse, even without a diagnosis they should provide support and you'd hope would be more qualified than the head of year 9 in providing this. Although it's just the one he's had and may ever have, would the GP, hospital doctor or anyone else be able to provide any recommendations? Does he have any follow up appointments?

Until he has any diagnoses then an ambulance should be called immediately.
There is no way of knowing why the seizure is occurring.
Once diagnosed with epilepsy we were told that we can wait 5 mins before calling an ambulance. Thats then classed as status epilepticus and may need rescue meds to stop it. My Dds have never lasted longer than a minute or so. She does take up to 20 minutes to ‘come round’.
Was this an early morning or night time seizure. They tend to be one or the other.
I would also start pushing for more tests. They tend to not bother unless they’ve had more than one.

Some one in the school will be, probably. The chances are very high they have at least one other pupil with epilepsy.
Not all staff will be specifically trained.
You could email his teachers to make sure they are aware and give some recommendations as to how it is handled.
School do need a care plan.

I think the problem from the school point of view is that they have not had any professional advice. You need to get the hospital team or GP to draw up a plan that informs the school what they should do in the event of a seizure, what warning signs there are etc etc. If he is to use the school transport alone then you need to check with the medical team that this is safe and get something in writing.

They are very sensible things to put in place. I slept is ds's room for about a month after his first. He lives a normal life these days. Yes he occasionally has seizures now they are mostly under control but we all know what to do, it's not as scary anymore.

I wouldn't be happy with the 5 minutes at all. He isn't diagnosed, the head of year 9 isnt qualifed to make this decision. Personally I'd be calling an ambulance or taking him to hospital myself if one isnt available.

As for training, no one in both ds's schools where trained. It happened after we pushed for it with the epilepsy teams help. He definitely needs a care plan, and not from the head of year 9. Professional medical advice from your GP or similar.

For all the people saying I can't believe schools are not trained in epilepsy - what would that look like? There are many different types of seizures. The protocol would be different for different people. Treatment would be different for different people. Schools are massive institutions with huge numbers of staff and students. How would staff remember the ins and outs of every student's medical condition? If a student in my class had a seizure, I would try to ensure they did not hurt themselves while having the seizure. I would time it and would immediately send for help. I am not trained in first aid and have no particular expertise.

I’d suggest you call Young Epilepsy for advice. They have free training for school staff and can help with a care plan. I also think the policy should be to call an ambulance straight away until you have a specific diagnosis and a care plan agreed by a doctor. My daughter had seizures as an infant and is currently seizure free and I would expect school to call an ambulance if she had a ‘first/relapse’ seizure now years later. I also wouldn’t accept him being excluded from anything on the basis that he ‘might’ have a second seizure.

We’ve a private appt next Saturday with a paediatric neurologist who specialises in epilepsy and seizures so I’ll be asking about this for sure.. I don’t know which way to turn at the moment 😞 I’lm signing up for an epilepsy testing course running on Wednesday morning, for my own benefit. I did one about 20 years ago and they are v v informative.. I’ll certainly be talking to school too when I have my questions drawn up x

We gave an appt next Saturday with a private paediatric neurologist specialising in epilepsy and seizures etc. I want an EEG and mRI doing. This was at night time.. he woke after about 15 mins of sleep, felt weird but couldn’t shout me.. then he went into seizure 🥺

*training course

It's stressful OP, be kind to yourself and reach out for support for yourself if you need it too.

That sounds like a plan, definitely ask at the appointment about school, and speak to the school again as you say armed with questions- sadly it sounds like you're going to have to advocate and push for support potentialy rather than it being offered which is more stress. If dropping him off for the next week is doable I'd be tempted to do that until the appointment and then push when you hopefully have more info. As I think I mentioned earlier, here the LA bus transport won't offer a bus place unless there's another adult on board, but they do then pay for alternative transport; they will have certain obligations as will the school hopefully even without a formal diagnosis of anything.

After my son’s first seizure we were advised to call an ambulance for another one. The school’s plan for only calling an ambulance after 5 mins is fine for someone with known epilepsy but until then you need to be more cautious. It’s so stressful at the start to deal with as a parent so you have my sympathies. I hope you get the investigations and medical review soon.

There is a DfE document called Supporting Pupils with Medical Conditions at School that the school must follow (in England but likely other countries in the UK have something similar). From that, the school must have a person responsible for supporting children with medical conditions, and it is them that you need to meet with (the school office will tell you who it is), bringing with you DS's medical reports. They will then set everything in motion for an Individual Health Care Plan, liaison with Health professionals, staff training, risk assessments etc.

Using the school bus needs risk assessing rather than a blanket ban. However, the driver having First Aid training is not necessarily as helpful as it sounds as DS will still be relying on other children on the bus recognising and telling the driver that he is having a seizure and the driver being able to stop the bus somewhere safe before administering first aid, whilst simultaneously calling for help and managing the behaviour of the other children.