epilim or zarontin or lamictal?

[kissingfrogs]

I have a week in which to choose which of these to use to medicate dd1 (absence seizures). The doctor has left the decision up to me so it's my call.
All have potentially awful side-effects but dd1s absences are having a bad effect on her so it's a case of damned if I do/damned if I dont when it comes to meds.
How am I, with no knowledge of epilepsy or pharmaceuticals, supposed to decide which med would be most suitable for my child? Pick the one that may make her fat, bald and deaf, or the one linked to suicidal thoughts?
I know it's a case of trial & error to find the right med, but I'm so stressed about this.

DD1 takes Epilim. I can't give advice, but I think Epilim is the most common AED to start with.

www.epilepsyresearch.org.uk/news/1003enews/1003enltr.htm

This has an article about this very thing-Epilim came out tops but have a read for yourself. It has some other interesting stuff in it as well.

Epilim was not fun - I went in to hospital (aged 17) on 300mg a day and was zonked on that, by day 7 I was on 900mg a day - I was very and disorientated - and on day 8 I was discharged on 0mg of epilim a day .

Lamictal is my AED of choice these days it does the trick (mostly) and has the added benefit of being a mood stabilizer so gives my anti-OCD/depression drug a helping hand.

Stay away from carbemazipine - I had hallucinations on that and phenytoin - I nearly lost all my teeth.

DS is back on epilim which is what he started on 3 years ago! Not sure how much it is doing as he has been on steroids for last 2 weeks which have completely zapped away his absences and non convulsive status and dramatically reduced his tcs. Lamictal was the worst of them all for us and brought on huge day time seizures he hadn't had before.

Just re read your post truthsweet- DS is only 6 and he's on 800mg a day!2 Not sure which is making him the hungriest, the presdoline steroid or the epilim!!

dd has been on lamotrogine(lamictal) ever since her epilepsy started and she has had no side affects.
when choosing, always go for the generic one so lamotrogine not lamictal, it is cheaper and if you start on it it saves the worry of changing later as we had to

gulp! Poor Riven.
Thanks for all your replies.
It really is trial & error isn't it?
Ta for the link, and generic advice.

I bet I'm back on here in a couple of weeks bemoaning AEDs.
At least I know you lot are here to advise (far busier on here than the epilepsy forums).

frumpy:
you're a star - that link helped a lot & has helped me make up my mind. Thankyou v much

Getting to this a bit late but just wanted to add out experience. (I think it's very strange dr. isn't showing a stronger preference). DD had really bad absences seizures - at their worst there were more than once a minute! She started on epilim - it made her very groggy, then stopped working and as it was ramped up just mad the side effects worse without improving the seizures. For us Zarontin was a wonder drug. Over night the absences stopped and have not come back almost a year later. No obvious side effects. She is still on a low dose of epilim as well but I have my doubts that it is doing anything. Best of luck.

Thanks SJ. I too was surprised that the dr refused to give me even a hint on which one to pick. Bit awful really because if there are any major bad reactions I'll be left thinking it's my fault for picking the wrong drug. Is that in drs mind too, liability? Noooo, surely I'm being paranoid here??
Having made up my mind for long enough to post to fumpy, I immediately became indecisive again when I realised the report I read on comparing these drugs didn't actually include epilim.
I remember the epilepsy nurse saying "they'll probably start her on epilim" so I'm going to give her a call to ask her advice. It's now between either epilim or zarontin (lamictal showing highest % of side-effects in trials).

So pleased for your dd that she is doing so well. Gives me hope. x

Good idea to get advice for the nurse. Epilim does seem to be usual one to try first. A small dose might just do the trick and plenty of kids take it without nasty side effects. It's been around for decades as far as I know. Which ever you try, you'll know you have other options if it doesn't work out.

Epilim (and others) IS Valproic Acid

Coming in a bit late here, but I wish ds2 wasn't on Epilim as I have a strong hunch that most of his behavioural problems are down to that. The neurologist has even held her hands up and said, 'it's my fault, we know Epilim has these side effects but at least it is controlling his seizures.' Thing is, Epilim alone didn't control his seizures, it took Epilim plus lamotrigine to do that. Again agree it takes a long time to ramp up the lamotrigine, and ds2 was very tired each time the dose went up. but now he's on his maintenance dose it doesn't seem to bother him.

Based on my experience, I would be concerned about getting generic lamotrigine, as the different labs use different fillers and the pharmacy couldn't always supply us with lamotrigine from the same lab, so it was as if ds2's body had to get used to the formulation each time. It's for that reason I signed NSE's petition about proposals to require pharmacies to supply generic AEDs even if a brand name is specified on the prescription. (link to letter to Telegraph about this issue)I understand that the NHS is trying to cut costs and that often generic drugs are just as good as the branded ones, but when you're messing around with your child's brain I think it's important to try to minimise variation as much as possible.

I keep thinking about this kissingfrogs - how strange for your neurologist to leave it up to you to decide That's a heck of a decision that you shouldn't be having to make.

JCAP - Every time I went up a dose on Lamictal (25mg increments) I would have a terrible streaming nose which would last about 12 days. I went up a dose every 2 weeks.

I have also had the problem of being given lamictal from varying pharmaceutical companies which actually had different amounts of snottiness as a side effect.

I now take APS lamotrigine which I hate (chalky diamond shaped tablets) which make me gag each time I take one as you can TASTE them going down the back of your throat for ages. boak emoticon needed MNHQ

I started off on epilim but then was switched to lamictal by the neurologist as he said that epilim was not suitable for women of child bearing age as there was the increased risk of polycystic ovaries. No runny noses here thank goodness.

I also started off on epilim when i was about 13, but I was allergic to it and they took me off it. ended up on lamictal and was fine. Not a side effect in sight!

also, for what it's worth, after a few aborted attempts at weaning me off it as I had more seizures, I was taken off all meds in my early 20's and have had no seizures at all for the last 8 years.

frumpy - what an idiot I am. Duh, I'm crawling up a steep learning curve here... thanks for putting me straight

Fatzak: I think it's not on leaving the decision to me really because Hello! Totally uniformed parent here! I did push her for her opinion on which 1 to choose but she was firmly non-committal. All she would say re side-effects was that the weight gain from epilim was of more concern for teenagers, and that if there were any behavioural issues it was because they were there in the 1st place (drugs making existing 1s worse but not to worry as dd1 doesn't appear to have any).
I guess it's a case of try 1, any one, just as they would, and an element of parental choice (just happens that I don't feel able to make that choice).

Guess what: received a letter today for follow-up appointment....end of July.
Crikey - I feel like I'm on my own with this for the next 4 months.
4 months!!!
Throw me a bottle of mind-altering drugs for my child and leave me to it?
WHAT???!!!
Will ring epilepsy nurse tomorrow - I've gotta have some support

Hope you have better luck with your epilepsy nurse than we do! First one just useless; second one thinks that me and DH don't agree about DS' illness and wants to refer us for counselling!!!

We don't even have an epilepsy nurse...

Also, for your neurologist to say that Epilim only enhances existing behavioural issues makes me feel quite angry . I bet she would never put it in writing, or would be able to produce references to back that up if you challenged her. And I imagine it would be extremely hard to study, given how long most kids are on AEDs (so they will change a lot over that time anyway) and how you can't ethically choose to have a control group with epilepsy but on no drugs at all.

Ds2 was 3 1/2 when he first went on Epilim and was considered advanced for his age (not just by me, his nursery teachers classed him as Gifted and Talented in Maths and in Communication, Language and Literacy). He's 5 3/4 now (in Yr 1) and is seriously behind in his writing, slightly above average in maths, average in reading but has recurring behavioural issues and the school (finally) are thinking of going through the statementing process. It's really not what I expected for the child I perceive as being my most intelligent out of the three. I truly cannot wait for the day when we stop giving him Epilim, and I'd rather try when he is young and risk him having more seizures, than wait for ages and see him struggle through school instead of enjoying his education.

Interestingly I have just found the whole text of a review article from 2006 comparing behavioural side-effects between older and newer AEDs. Unsurprisingly it says more, better designed, studies are needed but it does recommend the newer AEDs are used for children specifically to avoid lasting cognitive effects. It's here if anyone else wants to read it.

Justcut Your story is identical to mine. DS (almost 7) was so so bright up to being 4. I worried how they were going to stretch him at school and when he first started in reception he was working with the Year Ones. He is now very behind with his maths, probably average in reading and a little behind in writing. He is on School action plus and they are pushing for a statement on medical grounds after this last awful period of non convulsive status. I can't blame epilim fullstop as we have been on numerous AEDs but he was on epilim from half way through reception and that was when his behaviour/concentration probs started. We had the worst time on Keppra with the old keppra-rage and he had a dreadful time at school then. We are actually back on epilim at the moment but not sure how effective it is being as he also on a course of steroids - something is working as things are pretty good at the moment!