Epilepsy- multiple absence seizures

[changedmyname24]

Just after some advice and/or shared experiences really.

DS2 is 13, was diagnosed with epilepsy about 18 months ago. Has been on various medications, all of which seemed to work initially but then stop - maybe as he outgrows them? Was put onto Lamictal in addition to Levetiracetam in November. Horrendous settling in period with that including daily vomiting for a month. Since Christmas Day! he has been fine & we have seen only a handful of absences or drops - tonic clonics stopped completely which was the aim, the consultant said.

He has put on about 4kg of weight in that month, which may be of relevance?

In the last week, he has had a couple of episodes where he has had multiple absences in one spell. This is not something we have seen before in him.

On Saturday, he had maybe 10 in half an hour or so, coming back between them, but then going straight into another. DH was worried this was Status Epillecticus so rang 111, who of course advised to take him to A&E. My view was that it would have been sufficient to let his epilepsy nurse know (she works Monday-Friday) & just keep a close eye on him, as he had no signs of Status Epillepticus that I could see online & 111 will always advise A&E with an epileptic child. Hospital did all usual observations & found absolutely no cause for concern, just wanted to update his consultant.

He had similar at school today, so because they are aware he went to A&E at the weekend, they have sent him home. He is now home & 100% & missing lessons, which he finds difficult anyway. So I feel that we are back to a state of him not receiving a sufficient education because school & DH are panicking too much. Or am I not panicking enough? We had a spell of school calling me multiple times a day & this feels similar 😏

Anyway, just wondering if anybody has similar experiences they can share?

Not specifically epilepsy, but if your son is unable to attend school due to medical reasons then the local authority has to provide a suitable education under Section 19, if this is something that's likely to be quite unstable for a while then please get the school to make an application for 'blended learning' or whatever your local authority call their Section 19 provision x

Yes the weight increase will affect the medication. The maximum dosage depends on weight. Call the nurses and they will advise.

My daughter used to be on levetiracetam (keppra) and lamictal but kept having seizures. When she transferred to adult services they dropped the keppra and replaced it with sodium valproate and the seizures stopped - that's nearly 9 years now.

They don't like giving sodium valproate out but in her case it's been a miracle.

But she does still have the odd absence.

Anyway, do you think your son would be safe at school in this state? Would they not send him home?

Going to A& E is a different matter. I probably wouldn't.

I wonder if they might try sodium valproate with DS. Sounds very similar.

I fully believe that DS would have been safe at school, certainly as much as at home! He was not fainting or convulsing & didn't injure himself. School were just freaked out by multiple absences. They did send him home but I feel it was unnecessary.

I equally think that A&E was a complete overreaction. DH has health anxiety himself & is at the doctor or hospital most weeks & I feel in this case it transferred onto DS.

Thank you. Hopefully he is nowhere near this point yet but it is worth keeping in mind.

He cannot learn when not at school & I cannot go to work, which is problematic.

Under those circumstances I wouldn't take ds to a&e.

We've certainly had a lot of experience of school panicking due to absences. It got to the extent we decided to home educate him. He was constantly being sent home. I was being called almost every day. Ambulances were being called for absenses which isn't remotely needed. Stress was a major factor for ds, people panicking wasn't helpful. It only caused more seizures in school, triple what we would typically have at home.

As you say if you ring 111 they are always going to recommend hospital. If we have a particularly bad period I will let the epilepsy team know but that's all we've needed to do.

Our situation was slightly more complicated due to ds being non verbal, that probably added to their panic.

He is now better controlled on sodium valporate. He did have weight gain initially but that did level out as did other side effects. He still has the odd one but it's nothing compared to what he was having. It's common to have to adjust meds as they grow. We've had a number of alterations. There's usually a small adjustment period but for us at least nothing hugely concerning.

That sounds awful. I can totally understand why ambulances made the situation worse!

I do think it comes from a place of care & concern, but it is unsettling & counterproductive. It almost caused me to have a breakdown when school were calling a lot last term & the other DC pick up on this too. Very awkward that DH is so overprotective & anxious around illnesses. I don't know what the solution is as we couldn't homeschool & DS loves his school, teachers & classmates wholeheartedly.

Has ds got a detailed care plan from the epilepsy team? Have you asked if the epilepsy team will speak to them, offer some advice etc.

I would actually love him to have a Weight gain- he is on 1st centile & has never been higher than 7th (like his father,). This is despite eating anything & everything & good amounts (last time he had school dinners, he had a roast, cake & custard pudding then went back for pasta bake 😂)

He has. The epilepsy nurse wrote a letter which I gave to school last time which calmed things down temporarily. But now since DH took him to A&E without good reason, they are back to panicking about every tiny thing 😔

I feel like I'm going mad with it all sometimes!

You may need to be a little firmer with school and dh. Of course it's scary however ds needs people to remain calm so he can lead as normal as a life as possible. It can be normal for people who have them to have multiple one after another. Often its nothing to panic about as long as they aren't huge in length. The epilepsy team might be able to update the plan to give more information regarding abscenses and when to be concerned.

Thank you. It helps a lot to hear you say that, because between DH & the school I have been wondering if I am too blase about the epilepsy & potentially risking something bad happening which I just brush off. But I know in my gut that he is ok.

I have been talking to friends, but nobody understands because most of them don't have any SN in their DC & the word seizure or epilepsy is instantly shocking to people, whereas for me it's mundane every day reality. Iyswim.

I absolutely get what you mean. It's something we see far more often and we get used to it. Initially we panicked but as time goes on you get used to it and what once was traumatic becomes normal. For school it's not something they see the way we do. It's scary and they will be concerned they aren't doing the right thing. Hopefully a little reassurance from a medical professional or even some epilepsy training may calm them down a bit. As for DH, maybe he needs similar. There are online epilepsy courses or maybe the epilepsy team have a suggestion. It may make him feel a bit more in control and understanding around when you need to get help. I think epilepsy action has parent courses online. I can find a link if you think it would be helpful.

you need a care plan from your epilepsy team outlining what to do in the event of seizures.
This can include a directive to not call an ambulance, send him home etc etc.
The school will then have to follow this plan and it should calm things down. They are covering themselves because they will be in the firing line if anything goes wrong and a care plan will pass that responsibility onto the neurology team.
Does your son have any rescue meds at all or is it nor severe enough ?.

I Thought we have one but it's definitely something I can ask at our next appointment next month.

He is not severe enough for rescue meds, thankfully.

I don't see why they haven't given him rescue meds. This would give everyone the confidence they need not to keep calling on A&E. My daughter had them but we never used them. But it was nice to know we had them eg on a long car drive on the motorway, at school. The care plan stated that she should be given them if a seizure lasted more than 5 mins. Otherwise she was to rest and we would be called.

His longest seizure has only been about 2 minutes. The complexity with him arises from the fact that he has 4 different types of seizures & medication has not stopped them (although latest meds seem to have stopped tonic clonics, at least for now).

My daughter only ever had seizures that lasted 1 minute but she still got the meds just in case. My point is that they give you and school some reassurance that you have a solution if he suddenly gets very ill. It's like having an epi pen for allergies - it is for when suddenly you are in an emergency. You hope you never use it, like with the epi pen, but you have it anyway.

I've just done a quick bit of research & I think his Levetiracetam needs increasing. He's on 1000g as he was 37kg, but now he's closer to 41kg so I think should increase to 1200g. Which I'm sure would make a difference. We have the consultant booked in for 3 weeks away so I will ask about it then & email epilepsy nurse with updated weight.