Epilepsy & Epilim

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Hi :) I've just found mumsnet & I'm really hoping that on a site like this, I can find others who have had similar experiences to what we are having now. I am at my wits end as what to do. If you have any advice or experience, it would be greatly appreciated.

Our son is 5 yrs old & in June had what the doctors put down to a fainting episode. They couldn't find anything in his blood work or observations, so that's what they called it.

His whole body went limp, he looked really vacant, was unresponsive & when he did start to come around, he made no sense at all & he threw up. Then he went to sleep & after a couple of hours, he was fine.

I've personally never seen anyone faint, so I have no idea.

He was sent for an EEG nearly 6 weeks later, but trying to get a 5 yr old to sit still for an hour just doesn't happen.
The guy doing the testing said it looked to him that our son was having absence seizures.

2 months later in August, the same thing happened again. So back to the hospital we go & again everything was normal. We were told that the results for the EEG were inconclusive, but there was differently something there. They also told us he wasn't having absence seizures (even though myself & a friend who's a nurse saw him have one)

After 5 hours at the hospital, they sent us home. An hour later, our son started having a full blown seizure. Back at the hospital, they run all the same test again. This time he didn't wake up, he was totally unresponsive (even when they took blood) & his eyes were pointing in opposite directions.

It was the scariest moment of my life.

He woke up at 5am & asked where his dad & sister were & why were we at the hospital.
When the pediatrician came to see us, she said he had epilepsy & had to go on Epilim.

When we questions the meds, she said they only real side effects to worry about were aggression (which isn't great as we have a 10 month old), being a bit hyper or sleepy.
So the choice was possible brain damage if the seizures get worse or some side effect.

He started Epilim that day.

Since he's been taking it, I've noticed a change. He doesn't listen, we have to repeat everything over & over, his short term memory is terrible, he has a lot of trouble concentrating (his teacher has also told us this), he looks tired all the time, he has become very loud & somewhat hyper after he takes his meds.

Last week I kept him home from school because he wasn't feeling well. He was asleep on the lounge & I woke him to give him his meds & he was acting really odd. The same way he does after a seizure. Not making any sense with what he was saying, then noises not words, being really sleepy & his eyes looking very vacant.
You can always tell be looking at his eyes.

But because I didn't see him have a seizure, the doctors aren't classing it as one. All we been told to do is up his dose of Epilim.

To me, this isn't good enough. He hasn't had anymore tests done. We're not sure on the type of epilepsy he has & they're not worried about any of the things we've told them, like his lack of concentration. They said 'See how he goes next year in grade one'.

What can I do? Who can I talk to? I just want to know what is happening to my little boy & how I can help him.

Hi

My DD is on Epilim too. When she first started taking it we had problems with increased aggresion/hyperactivity and hunger. The Dr warned us about it, and told us it will settle down. It did, but it took about 5 months, but at least it did! (DD has enough problems without her medication making it worse)

So try and hang in there, it should pass once his body is settled with hte new meds.

My DD has had further fitting on it too (and odd episodes), so the dose has been played with, but really just waiting to see how it goes. Have you been given anything to give your son when he does fit?

Hi my son has epilepsy he was given Epilim but cannot tolerate it. He has ADHD so this just made his hyper side much worse and it did nothing for his sezuires, infact made them worse. But this is not the case with everyone and it can take weeks, months even years to find the right dose and everybody responds differently to aeds.
My son has Tonic clonic, abscences and drop attacks he has tried many aeds. Only 1 has suited him but he has now had to have it reduced and we cannot find an add on to suit. Nearly all of them have had an effect on his behaviour, mental health and sezuire control has been very refractory.
It can be so difficult to find a balance.

Epilepsy Action UK is a good site and has a forum you can use. Also they have a helpline.

I real feel for you as its so horrible knowing there is a little boy hiding behind that bloody medication.
Good Luck

I really feel for you, I support young people with epilepsy and learning difficulties as a job, and it is often an on-going battle concerning medication. As with all medication, individuals react differently to them. Epilim is generally the first one they will put you on, but it is important to know that there are many many different types out there... however all of these have side effects as well, some of them very nasty (I could certainly warn you off a few!). Also, one thing that we have found (as support staff, not doctors) is that often the medication prevents the actual seizure, but doesn't control the pre-ictal activity so it often appears that there's a build up, so to speak, and this can have a HUGE impact on behaviour. So that kind of sounds like the way you were describing your DS - The peculiar things he's doing and saying could be pre-ictal if you've not seen him actually have a seizure.
It is so so difficult, and I do really feel for you because its not like you can use your DS as a guinea pig and try out all the different meds to see what's best for him. My advice would be to do some research and then fire questions at your DS's doctor next time you go. If you've got ammo, then they can't fob you off. Hope this helps.

You feel as if you're being left to cope with it all by yourself with practically no support don't you? I felt like that too at first because I'd had no experience of epilepsy.
Luckily my dd1 has only absence seizures, though these were difficult to cope with unmedicated as she walks off during an absence (e.g straight into traffic).

I was given a choice of medication (epilim, zarontin, lactimel (sp?). Afer researching them all I chose ethosuximide (Zarontin) as this one for for absences only and had the least side-effects.

So: I picked the medicine, I managed the dosage - increasing it as I see fit, I'll monitor the effects, I'll decide when/if to wean off etc etc. And I'm just a mum who knows nothing about epilepsy ('cept I do now). I've got used to it now but at first it was daunting. The upside is that the med works wonders for dd1 so we're really fortunate there.

I did make careful note of dd1's behaviour before meds. Yes, she was much shorter-tempered, tireder than normal, had tummy aches, lack of concentration. This was caused by the epilespy - and as the number of seizures increased, so did the symptoms. This makes me realise that sometimes the effects you see are epilespy induced rather than side-effects of meds.
Dd1's seizures are controlled, but I can see signs of what Taysh calls pre-ictal activity, so I know the epilepsy is still there.

Knowing this helped me:

• Increase doage slowly. Do you have syrup or tablets? I chose syrup so that I could measure more acurately using a syringe with 0.2ml increments that allowed me to increase dosage very gradually by 0.2ml at a time (in dd1s case prevents the throwing-up induced by larger increases).
• ask if there is a specialist epilepsy nurse available (will do home visits) to discuss your concerns with
• call Epilepsy Action for advice and services (Freephone Helpline : 0808 800 5050)

Lots of hugs xxxxxxxxxxxx

Sounds as though you're coping brilliantly with a really distressing situation.

I can't be much help TBH, but I took a high dosage of Epilim for 15 years for tonic clonic seizures and have only recently stopped (To have my DD!).

It took me a while to settle down (probably 6 months or so), but after that the drug has been very efective in helping me to get on with life.

I hope your son starts to feel better soon...Epilepsy can be a frightening condition. You'll find loads of support here

After I logged off here last night I also thought of another point! But when I came on this morning Kissingfrogs had beat me to it lol :)
There are epilepsy nurses generally in most/all paediatric departments (or at least linked to paed departments) at local hospitals, but also often your GP will have an epilepsy nurse available. If it helps, all of the nurses that I've met are lovely, as nurses usually are :)

Ds is on eperlim and recentley discussed about increasing it as though full seizures now controlled does still suffer with absents. But for various reasons one being that it can slow down the brains responses to which with brain damage is not always good .Were not increaseing unless the abscences become mire frequant or full seizures

Hi, my DS is 4 and has nocturnal epilepsy with one day time TC. All his tests/EEGs are clear but the seizures are classic. Anyway, I wanted to tell you first of all that you have my sympathy. My DS was diagnosed last year and it has been the hardest year of my life. Other people just do not understand what you are going through. It is exceptionally tough.

Anyway, they usually start off on Epilim as it is an old (and cheap) drug which is often v. effective for kids. Apparently it is a good sign if the first drug works. I wouldn't be too worried about upping his dose - we had to up and up DS's epilim with very little difference in the side effects.

It is really important that you know that all epilepsy meds affect individuals differently. What is a hideous drug for one child can be the magic solution for another. Epilim worked very well for my DS in terms of stopping his seizures. He was very tired and ratty for the first few months and especially after his doseage was upped, but eventually a lot of these side effects go away. DS had big problems with nausea and started to wet the bed nightly ( a v.rare side effect apparently). Anyway, we debated for a long time as to whether we should take him off a drug which worked and risk worse side effects with others. Howvere, in the end we decided that bed wetting would affect his life and self esteem as badly as nocturnal seizures.

The consultant recommended keppra and at first I was horrified as I had read very negative things about in online. DH, very sensibly, pointed out that we couldn't guess our son's reaction to this drug based on other people's responses to it.

So we put him on keppra and whilst he was going gradually down on the epilim and up on the keppra, his behaviour was tired and vile BUT his brain got used to it. He is now just on keppra, which is working, keeping him seizure free and he is a much much happier child.

There are lots of different epilepsy drugs out there. If your child is not happy on the epilim, then fight for it to be changed. My reasoning is that it is better to do all this when they are little rather than when they are teenagers going through exams and feeling a lot more self conscious.

Keep your chin up. It WILL get better. Feel free to CAT me if you need to talk. I know how hard it is to get people to understand about it in everyday life. I will keep my fingers crossed for you.

Hi I also meant to add that your paed doesn't sound as good as mine in terms of explaining things to you. Mine is very good.

Your DS does need to be on medication. Not only to stop himself harming himself but because if you can get him seizure free for 2 years, then they will wean him off the drugs and at that point 50% of kids will go on to be seizure free.Upping the meds is important as my son only became seizure free on epilim/kepprs at certain dosages. The side effects of more tiredness etc do fade in time.

Also, has your paed done all the tests? My DS has had an MRI scan (in case of brain damage/tumours). Not nice but it needs to be done. Also he has had an EEG under some kind of sleeping medicine and normal ones. He has also had 3 ECGs and a 5 day one to rule out a heart condition which can mimic epilepsy (which bizarrely we found out that my son ALSO has as well as the epilepsy).

I second the above post on getting an epilepsy nurse. We have a very nice one who comes to your home. She helps with practical advice and I have found her supportive in helping me to come to terms with my child's condition. Apparently the Roald Dahl foundation can also offer support but I have never contacted them so don't know what's going on there.

Go onto the online forums too but remember that people tend to post when they have problems, not when everything is going well so you may find them depressing. I did.

Also, make sure you get a seizure bed alarm if you need one and epistatus rescue med. We also have seizure pillows too that we bought online. Hope this helps.

Hi - was wondering how frequently the nocturnal fits were, before you started them on Epilim? My son has roughly one a month. Started on Epilim 5 months ago. Behaviour getting more and more hyper and aggressive. Epilim didn't alter the frequency or severity of fits at all.

Hi, I'm Doigthebountyeater - he was having a nocturnal seizure roughly every other night. If Epilim isn't working then try a new drug. There are loads! My son has been seizure free for about 2.5 years now on keppra and is a great kid and doing well. I would give a drug about 6-8 months to make an improvement and if it didn't work by then, I'd be back at the paed's asking for something else. Keppra has been great for my DS.

For us, it took about 3 months to get the dosage right each time then I would expect at least another 2/3 months to see if the side effects wore off.

Hi after 30 nocturnal fits our 9 year old daughter finally got put on epilim 4 wks ago,since then shes become very tired around 7pm (has med around 5) she started off on 11ml then moved up to 22ml and after blood tests tomorrow she going up to 30ml. Since starting on the meds she has been fit free but at the min still has all the signs that a fit could happen eg feeling tingley,heady etc anyone been here? X