Epilepsy.

[Golf Boy]

Anyone on the BBS have any experience of this?

Our son has had a few attacks the in the last twelve months. He's just been in for an EEG to confirm it's the type they thought it was last year. Waiting for the results and hoping it is what they thought and he will grow out of it and won't require any medicine.

As an aside, I have to say the first time was the most frightening moment of my life ( as i didn't know a thing about the condition ). When your child in the middle of the night starts shaking uncontrollably, eyes wide open but totally unresponsive, unable to breathe and turning white -- you don't think to yourself:- " It'll be alright in a few minutes ".

[The Addonians]

No experience of epilepsy but i have been through a few scary moments with my kids over the years and i know how you must have felt. Good luck GB hope your lad makes a full recovery.

[Newfie]

I would need to know exactly the type of epilepsy they have diagnosed from the encephalogram and how old he is. It is unusual not to treat persistant Grand Mal seizures with medication.

[E_girl]

Yep, comes in various levels of severity.

My Dad's got it (fell off a bike and hit head aged 11) - he has the most serious type. Lots of tablets a day required, the fits are very severe and goes into a deep sleep for hours after one. Scary to watch and I'm often hurt keeping an eye on him while he has one. Cold weather and lack of sleep seems to bring more on for him.

My aunt (Mum's side of family) had it (meningitis as a baby left her with it) and died whilst having a fit aged 33, 7 months pregnant. My cousin, then aged 12 came to live with us.

Mate I sit with at Palace has it - as a result of mild cerebral palsy from birth.

I've been tested for it - as fainted a lot aged 10 to 17 and still do occasionally. But was ruled out.

Is more common than people think.

[Conger]

My boy has epilepsy, and it would seem there are many different kinds. My son has never had a convulsive fit like yours appears to have had, but its manifested itself with juddery, vacant pauses, sort of hard to explain.

ANyway, we picked it up hen he was about 4/5, when we realised it wasn't normal, and he's been on medication since. It seems its a bit of trial and error by the doctors to get the right medication as each case is different. He's not had any further 'attacks' for a year or two now (he's 8), and we follow the medication doses religiously. He takes it all in his stride, but I do think a mixture of the medication/not getting it sorted quickly has probably left him a bit behind at school.

Hopefully it'll all work out in the end, and we hope that in the future he'll be able to come off the medication.

[Newfie]

[QUOTE=Conger]My boy has epilepsy, and it would seem there are many different kinds. My son has never had a convulsive fit like yours appears to have had, but its manifested itself with juddery, vacant pauses, sort of hard to explain.

Probably Petit Mal. Good prognosis.]

[Maz]

No experience at all; just posting to say good luck with the EEG.

[Chocky]

Originally Posted by E_girl

My aunt (Mum's side of family) had it (meningitis as a baby left her with it) and died whilst having a fit aged 33, 7 months pregnant.

Bloody hell.

And good luck GB.

[Palestinian]

It runs in my family, but fortunately not my side of it - my sister had it when she was young but it was initally controlled with medication (eventually) and later grew out of it and she now leads a normal life although it seemed to dominate her childhood. Her daughter who is in her early 20s has it largely under control.

It is quite scary to start with, but if seizures become a regular feature you'll begin to recognise the triggers and symptoms of them happening.

Good luck

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[slim]

I was diagnosed with it when I was 29/30, just came out of nowhere and I'd either have a full blown fitting or I'd just phase out and drop like a sack of spuds (being 6'7" I'd often come round with some pretty impressive bruises). NHS are pretty good at getting everything in place nice and quickly - I was stuck on lamotrigine and basically took more dosage each week until it was under control and doing that very quickly becomes normal.

I'm now off of the meds because they were screwing me up pretty bad and I've been OK'ish, You'll very quickly become aware of even the smallest sign that he may have one soon - I used to go very flushed in the face and make the odd humming noise every now and again so both I and the Mrs knew something was possibly on the way.

Just keep your chin up.

[jone-zee]

How olds your boy GB? You can learn to spot the signs to help things but of course if he is quite youndg its difficult.

I suffered 2 Nocturnal Seizures then 1 daytime when I just went out without warning. Was stuck on Kepra which is fun (!) but getting used to it. All the MRI and EEG has been non conclusive so they are only 97% sure its the cause at present so just have to wait and see.

There are plenty of organisations that can help though and give you better advice than I probably could on the subject although the correct medication seems to be the biggest issue for a lot of people

[Sunny Fan]

A former flatmate of mine had it, and it's scary as hell when you're first confronted with a seizure. I dread to think what that fear must be like when it's your own child. Hopefully your child will grow out of it, many do, but the lesson I learned from my flatmate's epilepsy is to keep going back to the doctor if you don't think that the medication dosage is correct. There's a fairly fine line between high doses that pretty much stop the seizures but make you too drowsy, the correct dosage that enables you to live without fear of seizures, and a low one that doesn't do much to prevent them. That's in a fairly severe adult case though, I hope your kid doesn't need such advice, but just in case. Good luck GB.

[Golf Boy]

Originally Posted by E_girl

Yep, comes in various levels of severity.

My Dad's got it (fell off a bike and hit head aged 11) - he has the most serious type. Lots of tablets a day required, the fits are very severe and goes into a deep sleep for hours after one. Scary to watch and I'm often hurt keeping an eye on him while he has one. Cold weather and lack of sleep seems to bring more on for him.

My aunt (Mum's side of family) had it (meningitis as a baby left her with it) and died whilst having a fit aged 33, 7 months pregnant. My cousin, then aged 12 came to live with us.

Mate I sit with at Palace has it - as a result of mild cerebral palsy from birth.

I've been tested for it - as fainted a lot aged 10 to 17 and still do occasionally. But was ruled out.

Is more common than people think.

Sorry to hear about your aunt. Was it the actual seizure that killed her? A friends cousin died because he was alone in the bath when one came ( on the day of his Grandads funeral -- everyone was wondering why he hadn't showed. How tragic is that )

My son also sleeps very deeply after a fit, and has no recollection.

Until recently all my sons fits ( 6 of them in all ) came at night between 4 and 6. At first this was very worrying for me as I was scared i would not wake up and he would die in his sleep ( even though this is extremely rare ). After a while i was happy it happened in his sleep rather than, crossing the road or swimming for instance.

However he got one just after he went to bed the other week, and also had a small one in his face whilst at school -- you get used to it and think you've got it under control and it changes

My wife and I think there is a phsycological trigger to it.

Let's wait and see what the EEG says this time. We really hope he doesn't need medicine. I realise there are people a lot worse off but it I thought i would get it off my chest anyway.

[E_girl]

Originally Posted by Golf Boy

Sorry to hear about your aunt. Was it the actual seizure that killed her?

She was sitting up when had the fit and vomitted - which got lodged.

[E_girl]

Originally Posted by Golf Boy

Until recently all my sons fits ( 6 of them in all ) came at night between 4 and 6. At first this was very worrying for me as I was scared i would not wake up and he would die in his sleep ( even though this is extremely rare ). After a while i was happy it happened in his sleep rather than, crossing the road or swimming for instance.

Agree on this - my Dad had one in a swimming pool when a kid and ended up in a bad way. He's come off badly since by having them in dangerous circumstances - an escalator being the worst I can remember. Stitches have often been required.

I wouldn't wish it on anybody. But he lives a normal life and doesn't let it stop him doing things (bar driving - said he'd never forgive himself if had a fit at the wheel and killed someone.) Good luck x

[Jim Cannons Moustache]

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[Golf Boy]

Originally Posted by Newfie

I would need to know exactly the type of epilepsy they have diagnosed from the encephalogram and how old he is. It is unusual not to treat persistant Grand Mal seizures with medication.

haven't got the answers other than they think it's a type that mainly happens when sleeping and one that the majority grow out of - will try and find out though. I do know his age however he is 8.

[jone-zee]

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[Golf Boy]

I thought i would bump this - thankfully, touch wood, my sons epilepsy did seem to die out as he got older. Anyway i just popped down the supermarket and all of a sudden i see this kid on the floor with his mate looking at him confused. After a couple of seconds i realised it was a grand mal epileptic fit. Without thinking i jumped in and put him on his side and placed my hand under his head so he didn’t keep smashing his head against the floor. He started breathing again after a couple of minutes and the ambulance came.

A couple of things i found interesting - in spite of never having to do that to my son ( his attacks came at night in bed ) i didn’t even have to think about what to do, it was almost instinctual. Secondly i was very calm explaining to the teachers and kids what it was and telling the ambulance crew what i saw - when i left the shop and was walking home on my own i just burst into tears.

[sunshine lucas]

Originally Posted by Golf Boy

I thought i would bump this - thankfully, touch wood, my sons epilepsy did seem to die out as he got older. Anyway i just popped down the supermarket and all of a sudden i see this kid on the floor with his mate looking at him confused. After a couple of seconds i realised it was a grand mal epileptic fit. Without thinking i jumped in and put him on his side and placed my hand under his head so he didn’t keep smashing his head against the floor. He started breathing again after a couple of minutes and the ambulance came.

A couple of things i found interesting - in spite of never having to do that to my son ( his attacks came at night in bed ) i didn’t even have to think about what to do, it was almost instinctual. Secondly i was very calm explaining to the teachers and kids what it was and telling the ambulance crew what i saw - when i left the shop and was walking home on my own i just burst into tears.

Well done GB, you did brilliantly…