advice for epilepsy diagnosis on 8 yr old

[anorak]

Hello, I am Kimi and i am anorak's cousin.
My 8 year old has had one (maybe 2 ) fits and a EEG showed right side spike waves on the right side of the brain,. The hospital want to give him sodium valproate. I dont know what to do and i am worried sick, i dont want to limit my child and land him with a life time of drugs and i need advice from anyone who has been where i am now.
Please help me as i really am lost for what to do.
DS1 is a very bright boy and the fit came out of the blue in February and he has not had one since , but he may have had one before that we did not see, so i really am at a point that i have no control over and am feeling VERY LOST right now , so if you can advice please do. my screen name isn't working so anorak is posting for me.

Hello again i now have a clear pass word so i can post my own stuff, as i said befor i am anorak's cousin and i am in need of help.
Anorak has been a tower of strenth and as anyone who has known her will know she is a wonderful person and very giving.
I really do need advice A.S.A.P as i am going to see the DR again soon and i need advice to fight DS1's corner as my son is a wonderful child and i dont want to condem him to a life of drugs and to being labeled if i can help it.
Ihave looked up this drug on the web and the side effects are frighting to say the least, so if you can help, if you have a child with the same problems as mine or if you just want to have your say.... please speak to me.
I am one of those people who have the most control in life but at the moment that has been taken away and replaced with a void of helplessness. Ifeel so alone so please speak to me and shear any knowlage you have on this matter.
THANK YOU...... Kimi xx

Kimi, I'm really sorry to hear about your ds. It's not the same thing at all, but my dh (35) has recently had 2 fits and has been put on sodium valproate. He's been taking it for about 4 months now and has been to see the doctor about the list of side effects on the leaflet which comes with the tablets. The doctor basically told them that the huge list was "just to cover" the manufacturers if you see what I mean. I know this is probably not very helpful, but it really puts the frighteners on you when you look things up on the internet - which i also did and imagined all sorts of things happening to dh!

I don't know if the side effects for sodium valproate are different for children or adults, but please don't try to think of any drugs he may be given as "limiting". It is very important that the doctors try to control any seizures he may have - I think the fear of him having a seizure will be far more limiting than the drugs themselves, as they are given to try to control the seizures/prevent them happening. The best thing you can do is ask the doctors as many questions about the drug as you possibly can, ask for alternatives if you are not happy with what he may be given.

I know exactly what you mean about the "control" being taken away from you - when it first happened to dh I felt utterly helpless and totally lost - I felt like nothing would ever be the same again. DH has fits in his sleep, so his form of epilepsy isn't as severe as some, but it still doesn't take away the fear of a seizure happening.

Have you had a look at the epilepsy website? I can't for the life of me do links, but I think the address is www.epilepsy.org.uk.

I don't know if any of the above makes any sense to you, or helps in any way. Try not to let it take over your life and let your ds carry on as "normally" as possible - now that you have witnessed a seizure and received help, you will be more "prepared" (if that's the right word) when (if) it happens again. I'm sure someone else on MN will have more experience of this than I do, but good luck with everything, and I'm thinking about you and your family.

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Hi Kimi

i know the side effect list is frightening, but most people don't suffer any side effects; they are there because a small number of people do and doctors need to keep an eye out for any patient who does. When someone has epilepsy, it is far better to take the appropriate treatment, rather than risk having repeated seizures which can cause injury (because people lose control of their bodies and fall over) or even, with repeated uncontrolled seizures, eventual brain damage.

Sodium valproate is standard 'first-line' treatment. That means doctors try it first. If it doesn't suit your ds, there are several other drugs that can be used.

Speak to the doctors about your concerns. Ask them about initial reactions to the drug; when I was first diagnosed and put on medication, it really affected me but your body adjusts and it's fine after a few weeks. If you think about it, epilepsy is like having an electrical storm in your brain. The medicine calms everything down. So, just at first, it can slow down your thinking ? it's like operating in a bit of a fog. But as your body gets used to it you get back to normal. Do ask the doctors about this and about how long it is likely to be before ds is stable and they've found the right dose for him. If, after a few weeks, you are concerned that he's not OK, do go back and get the dose adjusted, or even try changing medicine. He may not need to take medicine long-term, some people can stop eventually. But if he needs the medicine, then it's far better to stay on it than risk having seizures, especially as a child could be really embarrassed and feel different from his friends.

Do look at the websites that Twiglett posted, and talk to the epilepsy charities ? this one is the UK's leading epilepsy charity that offers support and information for people with epilepsy and their families.

Epilepsy can be a frightening thing at first, but it doesn't mean your ds will be any different to any other child. It doesn't mean people are stupid, or have to limit what they do. If it's any comfort, I take anti-convulsant medicine every day and I have what many people would consider a high-powered job, a good social life (when ds allows!) and a family of my own.

Best wishes

... do get in touch with Epilepsy Action, the link I posted, as the more information you have, the better able you will be to deal with any concerns his school has. People at work and school worry about what they should do if someone has a seizure, for instance. And there's a lot of ignorance and mis-understanding of epilepsy. Arm yourself with the facts and you'll be able to handle this.
Finally, in a way you are in a good position, however bad it seems at the moment. In some parts of the country people face a wait of a year or so before they even get to see a neurologist but it looks as if your ds is getting good medical care.

First thing to know is that having a diagnosis of epilepsy doesn't mean that your son is going to have a different life to any other 8 year old kid. Epilepsy is not a rare condition, but most of us have never seen a person have a fit, why is that? Because the treatments that are available control the fits in the vast majority of people.

Most people will have no side effects with the medication. Some will have minor ones for a short period of time, while their body gets used to the treatment. The reason that the list is so long is that all possible side effects have to be listed, even if they only happen in 1 in a million people! Trust me I used to have to write these leaflets for a living! The potential risk to your son will be much, much lower than leaving his epilepsy untreated.

People with epilepsy are found in almost evey walk of life, and they are very, very few things that epileptic people cannot do. There are no probelms with driving, as long as their fits are under control. You may well have met people with epilesy and never known!

Having epilepy can seem a frightening thing, but it doesn't mean that your child is any different than he was the day before you had the diagnosis. Having epilepsy is an illness, just like any other, no better, no worse. It will not limit his ability in school, or out of it. I realise that is is worrying, but would urge you to visit a few epilepsy support groups, they will give you an honest picture of the condition.

I've worked with people with epilepsy, they are just regular people. Hope you feel better soon.

Second everything HMB has said ? no-one knows I have epilepsy unless I tell them. I think we are all far more aware of asthma, eczema and diabetes and we don't treat people with those chronic diseases any different to anyone else, do we?

HMB, just one tiny point out of your post - people with epilepsy generally prefer that description, rather than 'epileptics'. It's the PC thing about not being defined by a medical condition.

Soz , I did it properly the first time round! And the second!

I'll let you off then!

Ta!

A Looooooooong time ago I used to work helping to develop new anti-convulsants, so it is a topic close to my heart .

I've been epileptic since 6m old, and am on sodium valproate, what would you like to know?

I don't mind being called an epileptic

Hi kimi
I agree with everyones advice on this thread. My brother has had epilepsy since the age of seven and has tried several versions of drugs. The best thing today is let the dr work out what your ds needs and go with it. Things may be difficult but if you get the support you are offered then epilepsy is something that is very easy to control and it shouldnt affect your sons or your life. Like the others have said you would necer know my db has epilepsy unless he tells you. hth

Hello, and thank you to everyone who has been kind enough to answer my call for info.
I will be looking at the websights that have been sent and printing out all i can find out before going back to see ds1's Dr.
I have to say that when my son had the fit (it was in his sleep and thankfully my mother was staying and sleeping in ds1's room, she heard the chocking noise and rushed to get myself and dh) i was petrified, i had never seen a child fit before and i had no clue as to what was going on to tell you the truth i thought he was chocking to death and going to die.
When he stopped fitting he could not move one side of his body but thankfully by that time the ambulance was here and we were taken to the hospital. DS1 was mortified that he had wet himself more then anything else and after 4 hours at hospital we were sent home. I pushed the Dr for test's as i wanted to know why this had happand, and now part of me wishes that i had'ent.
As i said the EEG found a " CLEAR RIGHT TEMPORAL SPIKE WAVE DISCHARGE THAT SPREADS IN SLEEP TO MUCH OF THE RIGHT HEMISPHERE" and the MRI found a right choroidal fissure cyst as well but i was told that did not course the fit and not to worry about that (easy to say) i have found out / been told very little about what it it or what it could do.
Now the Dr (who first said no drugs needed) has sent a letter to say the consultant she spoke to wants to give him sodium valproate.
As i know very little about the condition any advice and info from anyone who has been or is in my position is such a help and so very welcome so thank you all very much ( and thank you for the welcome to MN)

Hi Kimi,

What happened to your ds is exactly what happened to my dh a couple of months ago - both fits were in his sleep and he had trouble moving/speaking afterwards, along with loss of bladder control and memory loss. He was fully back to normal within 20 minutes though. I had never seen anyone having a fit and thought he was going to die. It really is very scary, isn't it? I had trouble sleeping next to him, and every time he made a funny noise I jumped out of bed and switched the light on to wake him up!

DH has just come back from an appointment with his consultant. During his appointment, the doctor said that sodium valproate has "better results in children" so, perhaps that might be a comfort? (Although perhaps not to DH, as the doctor said he wouldn't have put dh on that particular drug, but as it is working ..!)

Good luck with the tests/appointments your ds is having - keep us posted.

Hello Kando and thank you for taking the time to give me your input, it is very much appreciated.
DS1 went back to school today and i had a chat with the head and filled her in on the things that are going on and she was really very ok about it.
After DS1 had the fit i made him sleep on a put you up bed at the end of mine for a week and then i slept on the futon at the bottom of his bed for another week, it took weeks until i went to sleep propley and even now i wake at the slightest noise and check on both my sons at least 3 times a night.
I am feeling a bit stronger about it all now (i am a control freak) no one tells you how hard it is to be a mother and make all the decisions. DH is very easy going and just lets me make the choices and sometimes that is a BAD thing, every now and then i would like someone to lean on, i guess he is as scared as me. I dont know when we stopped communicating but i really must do something about it.
I am so glad anorak pointed me in the direction of MN advice from other mums is priceless.
DS2 starts school next week so i may find time for myself to get better acquainted with MN.
Thank you again.

Hi Kimi, glad you've found this thread reassuring. Developing epilepsy is a pig, but if you are going to get it, IMO, fits in your sleep are much easier to handle (speaking as someone who has had a few). It means you are safely tucked up in bed and not falling around in public, injuring or embarrassing yourself.
Terrifying for anyone with you, though, and particularly for a mother (poor you). Dh thought I was having a heart attack when I had my first seizure (at the age of 29 ? no-one has any idea why it suddenly turned up then). Not sure if this is helpful, but my mum went through the same emotions/fears that you've expressed, even though obviously I'm a grown up. Vaguely trying to say you aren't alone! Do talk to Epilepsy Action, they will be really supportive.

hello, Edam and thank you for your input.
I am hopefully going to see ds1 Doctor soon (she has had a long summer holiday) and i will now be going armed full of info. Just knowing i am not alone is a big help and to know there is support out there and i can go onl ine and talk and people will answer even though they dont have a clue who i am is very reassuring.
Going to go and have a water fight with the kids and dh and friends now so life is not all doom and gloom!