Epilepsy - how long to try medication before concluding it doesn't work?

[CinnabarRed]

DS1 was diagnosed with epilepsy in February, and started medication (sodium valproate) in March.

He started on a small dose and built up to what his consultant felt would be the 'full' dose - 300mg in the morning and 400mg in the evening.

However, his seizures haven't stopped. They might have become less frequent (although he only had his first one in February, so it's quite hard to tell).

His medication has since been upped twice more - to 400mg/400mg, and now to 400mg/480mg morning and night.

He had another seizure this morning.

At what point do we try a different medicine?

Thanks in advance.

Firstly, sorry your DS has epilepsy its a lot for him and you to get used too.

Unfortunately there is no quick fix when it comes to gaining seizure control. Who increased his meds? I ask because in the early days A&E doctors would often up my meds when I got wheeled in again and again. I ended up with doses that were like a sledge-hammer to crack a nut and still poorly controlled.

Keep a diary of seizures and note anything that may have triggered him e.g. tired, hungry, not drunk enough water, thunder storm or having a cold etc.

Note too if the seizures change in any way e.g. length, warning signs, severity.

Sodium Valporate is a tried and trusted medication, been going for years but there are more modern medications available not necessarily better. I'm guessing your DS is having full general seizures.

Hopefully today was a break through seizure and seizure activity will continue to calm down. Like I said at the beginning epilepsy doesn't go away as soon as you start the tablets.

Thank you for replying fortified.

He has tonic-clonic seizures, with the occasional absence seizure and (once, so far) a complex focal seizure.

His meds are being increased by his paediatrician.

We keep a diary but we haven't found any triggers yet. Most (c.70%) of his seizures are in the morning but his blood sugar levels have been normal when he's been tested.

So far, he's had two prolonged (status) tonic-clonic seizures that have scared the living daylights out of me. But most have been 3-4 minutes.

I meant to ask - what's a break through seizure?

A break through seizure is when you've been controlled for a few months or weeks and a random seizure happens. I've found A&E doctors immediately panic and think increasing medication is the answer but my neurologic always takes the view, well what was unusual that set me off. If I can give an answer, he's happy to leave me alone until my next scheduled appointment.

Just before 9.00am is a vulnerable time for me too. It was a nightmare when the girls had to be walked to school. Thankfully they are now both at secondary school and I can start the day at my own pace. My sugar levels go low after a seizure so I find sweet tea and a biscuit helps.

Have you been in touch with Epilepsy Action. They can give you loads of information and have a forum called forum4e where you can get support from other people living with epilepsy and parents like yourselves. Or send me a pm

I'd second what fortified says about Epilepsy Action - they are an excellent organisation. DD is also on Sodium Valproate. Eventually we had to have Keppra added which pretty much gives us control, just the occasional break through seizure and maybe 1-2 times a year she will get a week or so of prolonged seizure activity. She's been on meds now for 3 years and I would say in the last 15 months we have had good seizure control. Watch for growth spurts as we found that can often lead to her being under medicated and meds needing readjusted.