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epilepsey(does anyone know anything?)

hi all
my brother has just been diognised with epilepsy and i am trying to find out some information.

the seizures are quiet bad his right eye start blinking and he stops breathing. He started having seizures after suffering extensive hypoxic brain damage from a shunt blockage.

he has a tracheostomy and the respiritory arrest is managed by an ambubag and a re-breather bag.
He is on sodium valporate and carbamazephine and these do not seem to be working.
If anyone can tell me anything that may be of use then i will be extremely gratefull!

Reply 1

Kurdt Morello

kimmybabe

hi all
my brother has just been diognised with epilepsy and i am trying to find out some information.

the seizures are quiet bad his right eye start blinking and he stops breathing. He started having seizures after suffering extensive hypoxic brain damage from a shunt blockage.

he has a tracheostomy and the respiritory arrest is managed by an ambubag and a re-breather bag.
He is on sodium valporate and carbamazephine and these do not seem to be working.
If anyone can tell me anything that may be of use then i will be extremely gratefull!

He cant really go to shows or clubs that use strobe lighting which can seriously increase the risk of an epileptic fit without doubt - Metallica's video for Sandman and other such music videos can bring on epileptic fits and seizures

Reply 2

GH

13

We had the exact same thread last week, same wording as well. Go to the GPs.

Reply 3

kimmybabe

OP

yer well i only posted it yesterday and today, he is eight years old and is currently in hospital hes been in for two years, he at the supposed great ormond street and hes been there for a year and before that he was at kings they are all clueless idiots especially the bloody nurses, they have only just admitted he is having epilepsey!
in the last two years i have had to watch him die in my mothers arms and i really thought we had lost him, also he has had numerouse cardiac arrests and with his epilepsey he just stoppes breathing and one day im worried that maybe we wont be able to get him breathing again and his heart will fail and he maybe wont live!!!

Reply 4

Kurdt Morello

2776 should really be more considerate - dont worry about him Kimmy

Reply 5

GH

13

Kurdt Morello

2776 should really be more considerate - dont worry about him Kimmy

I am sure that doctors with years of clinical experiences and patient data onhand have more knowledge and handle on the situation than any of us on here.

We could do more damage.

Reply 6

Kurdt Morello

2776

I am sure that doctors with years of clinical experiences and patient data onhand have more knowledge and handle on the situation than any of us on here.

We could do more damage.

simple support and tit-bits of advice never hurt anyone - strobe lighting is dangerous for instance.

Reply 7

GH

13

Kurdt Morello

simple support and tit-bits of advice never hurt anyone - strobe lighting is dangerous for instance.

Support sure, but advice? Come on, sensible advice maybe, but then it is only common sense. Eg you don't exactly force a patient who just experienced myocardial infarction to push his body to the physical limits.

Reply 8

kimmybabe

OP

IM NOT ASKING Anyone to diagnose him all im after is bits of advice maybe someone has been through a similar situation or knows someone that has that sort of thing...anything!

Reply 9

Kurdt Morello

2776

Support sure, but advice? Come on, sensible advice maybe, but then it is only common sense. Eg you don't exactly force a patient who just experienced myocardial infarction to push his body to the physical limits.

for a demi-god who has just passed 7000 posts you read surprisingly little of what others have to say ... please read my post again and come back to me

Reply 10

iiikewldude

2

2776

I am sure that doctors with years of clinical experiences and patient data onhand have more knowledge and handle on the situation than any of us on here.

We could do more damage.

i think she just wants emotional support rather than detailed medical advise.

Reply 11

Babygal

I know exactly what you're going through, my 3 year old brother, had a similar case, but it wasn't as bad as your brother, his high temperature brought it on, he stopped breathing and there was saliva coming out of his mouth he wasn't making any eye contact. my parents were screaming, they just didn't know wat to do, they were afraid of him dying, cos my grandmother died recently, they couldn't bare to lose someone else.
Don't worry to much cos that'll get you more upset, just make sure your brother is kept away from the things which may bring on the fits.

Reply 12

ruthiepoothie

11

http://www.epilepsy.org.uk/

Reply 13

kita

I feel really sorry for your family and your brother, it must be horrible. It will behard work looking after him, as i have one mentally handicapped sister and my mum is a serious asthmatic, but with the right emotional and physical support from the right people, youll all be fine,
take care x

Reply 14

RetiredAccount89

18

Babygal

I know exactly what you're going through, my 3 year old brother, had a similar case, but it wasn't as bad as your brother, his high temperature brought it on, he stopped breathing and there was saliva coming out of his mouth he wasn't making any eye contact. my parents were screaming, they just didn't know wat to do, they were afraid of him dying, cos my grandmother died recently, they couldn't bare to lose someone else.
Don't worry to much cos that'll get you more upset, just make sure your brother is kept away from the things which may bring on the fits.

This is all quite new to me. I'd never heard before of someone's breathing stopping when they fit. I know people who are epileptic, and just about all take sodium valproate. For those who don't know, epilepsy is caused by areas of the brain firing off randomly. The drugs work by depressing the brain, and in doing so can make you a bit dopey and forgetful. Valproate doesn't affect the memory very much hence why it's used more for kids and young adults (else school would be very hard).
J

Reply 15

Emma Louise

6

My brother is Autistic an recently started having fits. He's 20. I've seen him have two fits. He's had about five or six I think. Well scary though!

Reply 16

kimmybabe

OP

Hey

Reply 17

kimmybabe

OP

IM NOT AFTER EMOTIONal support or anything else ive had to deal with my brothers certain disabilities for 8 years, and his more recent developement due to the brain damage!
i just wanted to know medical advice, like if there is a drug out there that can help as the hospital have nearly tried everything they can, if maybe one day these fits and respiritory arrests will stop, if someone has found a way of calming the fits and so on!!
i just dont want my parents having to resuccitate their own child which they had to do a year and a bit ago when he went into cardiac arrest at home due to one of the seizures going undetected!
if only there is something that could stop his lack of breathing i could deal with the rest, the shacking and eye flickers etc.

Reply 18

RetiredAccount89

18

kimmybabe

IM NOT AFTER EMOTIONal support or anything else ive had to deal with my brothers certain disabilities for 8 years, and his more recent developement due to the brain damage!
i just wanted to know medical advice, like if there is a drug out there that can help as the hospital have nearly tried everything they can, if maybe one day these fits and respiritory arrests will stop, if someone has found a way of calming the fits and so on!!
i just dont want my parents having to resuccitate their own child which they had to do a year and a bit ago when he went into cardiac arrest at home due to one of the seizures going undetected!
if only there is something that could stop his lack of breathing i could deal with the rest, the shacking and eye flickers etc.