3yr old diagnosed with epilepsy, medication?

[gaffers]

Hello, I hope someone can give me some advice. My son recently had 2 seizures, on both occasions he required assistance with breathing and IV lorazepam. The seisures happened early morning 6am. We have been advised that he will probably need to start sodium valporate. Does anyone have experience with this good or bad?

Hi gaffers; really sorry to hear about the seizures; it must be a worrying time for you.

Sodium valporate is one of the oldest drugs used for seizures; it's wide acting for different types of seizures, and it seems to be the first one you will be offered.

seizures can be very frightening, not to say dangerous, so the doctors are likely to recommend medication. without wanting to scare you, do be aware there is likely to be side effects; my son was terribly affected when he first started on it age 4 ... like he was drunk, stumbling around dribbling, and being very clingy. eventually he got a bit more used to it, but the side effects remained to a much lesser degree. It's a pay off between side effects and seizure control.

normal procedure is to ramp up the dose slowly. until get to a point where seizures are under control, with advice from the docs.

SV sorted my sons jerks and absences, but then he did have some tonic clonics and we switched to another drug - he's six now and we are reducing the dose slowly as he hasn't had a fit for over a year. It seems to be a bit trail and error to find the right drugs and dose.

There's a lot of knowledge and experience on this board about epilepsy: you'll get plenty of good information.

One thing I learned on here is that with SV there are different brands, and they can be metabolised differently by some DCs. eg one brand is sugar free. Ideally you want to find a way of getting the same brand every time. That said it never seemed to affect my DS if he had different brands of it.

good luck!

Thanks for that insight Lauree, as he has only had 2 seizures and we are still awaitig sleep deprivation EEG, I am inclind to hold off medication. He has CP R hemi, so anything that affects his balance concentration etc will really cause him to struggle.

Hi gaffers/helentheresa, I'm presuming you are the same poster.

My DD1 had a series of 'drop attacks' - episodes where she crumpled to the floor for no obvious reason. The first few were dismissed as tripping/falling over something that they couldn't identify, as she has ataxia so wobbly at the best of times, and a virus by the GP. One day she fell while standing at the playdough table, then twice on the walk home holding my hand, so I knew it was a vertical drop, not pitching forward, IYSWIM.

We were fast-tracked to the hospital, saw a consultant, had an EEG and had an epilepsy dx on the strength of a verbal report. No meds. But then the written report came through, and the consultant phoned to ask us to come in and discuss meds.

DD1 started SV in January 2009 and has been on it ever since. She hasn't had a drop attack since December 2009, but has had tremor and absences. She has tried clobazam (Became drowsy, unco-ordinated, unable to interact), ethosuximide (Huge hives and rash, emotionally disturbed), and lamotrigine (just weaning off because of tremor and malco-ordination) in conjunction with the SV, but had to stop them all.

SV is the only one that she has had no symptoms from.

I don't know what the stats on CP and epilepsy are, but I do know that because my DD has a brain malformation, her consultant is very keen to max out whatever med she is on, because if seizures establish they are likely to be harder to treat, so that is something to explore with your consultant.

Hi G/T!

I'd go with the meds over the seizures tbh.

Seizure meds are v individual things - it's very much a case of trial and error trying different meds and different doses till you get full control. Plus the side effects, if any, also vary from child to child. And many side effects only last for the first 2 weeks or so on a med and then wear off. All of which means it can take a while to find out the "right" med for you.

DD1 is on large doses of several meds. She's not particularly prone to side-effects tbh, she metabolises the damn things so fast. Down side of course is they don't actually work all that well, but hopefully that won't be your problem. As Lougle says, SV is about the most bog-standard Epilepy med you can get and doesn't have a lot of side-effects, certainly compared with the meds kids were on while I was at school; I'd not get too worried about starting on that one. Seizures caused by brain abnormalities seem to be a tougher nut to crack than the inherited sort and tbh I'd be pushing to be under a neurologist/epileptologist for this if you're not already: Epilepsy is something general paeds don't know that much about and their training seems to consist of: "give them the standard dose of SV or Carbamazapine. If the seizures stop, then it was Epilepsy. If they don't, then, er..."

How old is he, btw?

Hi there -my dd has epilepsy due to multiple benign brain tumours due to a condition called Tuberous Sclerosis.

She started having infantile spasms at 12 months and we held off meds til we had an EEG which I really regret now, as some- not all - seizures can cause further problems if left to continue.. I didn't know that at first but we started sodium valproate when all that became clear and it slowly reduced then stopped her seizures with minimum side effects. She gets very tired.. but nothing else very obvious for us.

It's a strange one though coz we never know what is caused by the condition and what is caused by the SV.. and/or clobazam which our dd started as she was having lots of seizure activity going on at night.

We are lucky that she has tolerated the drugs well, and apart from occasional mild absences or other quirky ' events ' that don't trouble her too much ( apart from keeping us all awake at night!) we have good control these days- Touching wood as I write of course!

Finding the right type/brand is important coz we started with crushing tablets in food but that became impractical then we had a sugar free one but the e mumbers seemed so numerous and made her really manic so now we have a clear liquid one with no colouring that has sugar not artificial sweeteners and this works for her..

Good luck - and fire away on here there are lots of experienced people on here with more advice and experience..

Hello, sorry new to this hence change in name, gaffers reminded me too much of being at school. Finn is 3 will be 4 in Nov. I have never noticed any seizure activity prior to these 2 recent episodes. we haven't seen a specialist yet. I noticed on this site that Helen Cross at GOSH has been mentioned. I wonder if I could get to see her?
Also do you think the more seizures he has the more likely a pattern will develop? I suppose I worry because he has been delayed in meeting his milestones, that any medicine, he is given will exaserbate his problems.

If you can get referral to Helen Cross I think she'd probably see you at least once though she may discharge you to a local team if she thinks she can't help you better than they can. She's very good on the Ketogenic diet - an alternative to meds in some cases - and I'd definitely say get referral to her to discuss that, if nothing else.

The seizures/meds thing is a bit of a balancing act tbh. On the one hand, there is no statistical evidence that delaying medication makes much difference to outcomes. On the other hand there is evidence to show that like any neurological pathway, seizures get better if you practice them - you have enough, you're more likely to have more. And I think this is why you need a neurologist's advice at this point - tbh for a child with a brain abnormality, he's done pretty well to hold seizures off till nearly 4. And 4/5 is a sort of peak for seizures if you have the milder sort; it may be that he has a bit of a surge now and then it all dies down till puberty. Then again, EEG may show that the seizures are pretty much bedded in now the brain has reached a certain level of maturity. I imagine the meds regimes in the two cases would be different.

Something you have to bear in mind - the meds may slow him down. Seizures will slow him down more, and the more severe/frequent the seizures are the truer this is.

I looked into the ketogenic diet for DS because I was very wary of medication, and went to a 'matthew's friends' conference which was extremely informative.

I came to the conclusion, that for us (seizures were mild only momentary jerks or absences, and he's only ever had 3 big tonic ones), that it wasn't worth it: the diet is a pretty extreme change away from what I would consider 'healthy eating'. However I can see that if the meds don't work, or the fits are more severe, the keto diet may start to look much more attractive, and it does have good success rates.

We managed to hold off going on meds until DS started school, and then we agreed because he wouldn't be under close supervision all the time, and the risk of an absence or jerk while he was climbing stairs etc was the deciding factor.

Thanks so much for all your posts.
I have just received an appt for his sleep deprivation EEG next Monday; so hopefully he will remain seizure free till then.