steve had another fit

[hev]

me and steve had a bit of rough day today,to be honest his loudness was grinding on me so we went up mums but i left early cos we kept niggling at each other,got in and mum phoned steve had another epileptic fit,they called ambulance who checked him over,didnt need to go to hospital,the thing is i feel so guilty now cos i was snappy today,his loudness 24/7 drives me round the bend and i know its not his fault and im thinking the stress of me and him might not be helping his epilepsy,the paramedic said up his dosage of tabs and he said sometimes it takes a long while to get the correct dosage for epilepsy so that could be it

[David Matthew Baker]

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Hope things sort themselves out for you both sooner rather than later.

 

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[smiley]

 

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[Elly]

<'> Maybe these will go a little way to helping?

Is his loudness worse before he fits? Some epilepsy sufferers have strange warning that one is on its way. Maybe you could contact his consultant and let him know whats happening? Sounds as though you could both do with a chill out zone. Is there anything that helps calm him? Maybe headphones, a weighted blanket or music?

Wish I could offer more help.

Try to keep smilin

Elly

[Flora]

hev <'>

 

What sort of support are you getting from the NHS for the epilepsy? Has Steve been given an appointment at a seizure clinic, for instance?

 

Flora

[Guest Lya of the Nox]

<'>

dnot feel bad hun, u need to be learnin what the advance warnings are of these fits if they have any

thinking of u,

x

[carrieq]

The loudness might be his aura before a seizure. Some of the kids I work with are really happy, vocal and giggily before a seizure. This is a bit sad as people who don't know comment on how cheery they are and you know what is coming.

We keep seizure diaries so we know time of day, where and what was going on before to see if there is any pattern.

Hope you get it sorted out!

Carrie

[hev]

thanks carrie,yeah thats a good idea keeping a diary to see if theres a pattern

 

steve is extremely loud all timeanyway but the last one he had was when he was expelled from school and today hes excited about going on a train to london tomorrow with his cousin so im wondering if that brought it on.

 

flo hes got appt at seizure clinic on 6th june and eeg at kings on 16th june,the appointments have come through quicker than i thought

[Bagpuss]

Hev, hope they get Steve's medication sorted soon <'> <'>

[Bambi]

Awww hun <'> >< <'> ><

 

Hope things soon settle down for Steve bless him, a friend of mine has a son who used to fit 40-50 times a day and he has a rare epilepsy that even the doctors were baffled about it and through their own determination and strength found out what was wrong with their son(their own research books & internet). He was a young lad when he had to start wearing a crash helmet (5 yr old) as he would be VERY dangerous all day long (jump out of windows), it took them to meet a Russian doctor (he flew in from Russia) in London to get him diagnosed with this rare epilepsy. He was 7 yr old when he was dx.

 

Now he is a 14 yr old lad and he is so calm its unreal, yes he is on medication but the fits are under control and his behaviour is LOADS better and such a pleasant, polite young lad.

 

Your a great mum and never forget that hun, send Steve our best wishes <'>

 

NEVER EVER give up the fight, if u have to seek legal advice to get anywhere then i strongly suggest u do it, i am at the moment and it takes the extra stresses away, having someone fight ur corner and deal with all the legal jargon that we get thrown at us is a godsend (i appreciate that not everyone can financially do that also, which makes it even harder for MANY of us) We dont need it and our disabled kids/adults have human rights!

 

Bambi x

[hev]

i spoke to NAS on the phtoday and they were fantastic really helpful,explained everything,gave me more strength

[Kathryn]

Hi Hev,

 

Glad you managed to get through to somebody on the phone at last.

 

I hope Steve's medication is sorted out soon and you get all the information and support you need - it must be worrying.

 

<'> <'>

 

K x

[hev]

another ambulance last night paramedics were lovely they said as its all very new to me i will start learning to cope with steves minor fits,they said he will normally come round after few minutes if not then call them but few minutes is like forever when he wont wake up i completely go to pieces which dont help situation as time goes on im hoping i get stronger,hes ok today just v tired

[Frangipani]

Hi Hev,

 

System over there is certainly different to over here. My daughter wasnt allowed out of hospital until they had a Catscan and EEG they found something on her brain of concern and arranged an MRI scan there was a moon shaped thing that caused her seizures they had to monitor this for 3 years. They had a round conference of a dozen Neurologists and Neurosurgeons assess her scans. Sounds like you need a referral to on of the best Neurological Specialists, the way to get this is to get a Paediatrician involved. My sons Paediatrician handled everything, he happened to be at the hospital and took over all her reports and paperwork.

 

Keep all your scans together and take them with you. Also a diary of date time and length of seizure. This will help the specialists.

 

All the best

 

Fxx <'>

[Tally]

Hev, it will help if you can time the fits, both for keeping a record, and so that you know at the time that it's following the usual pattern and there's no need to panic. Easier said than done, I know, but it will help if you can.

[oxgirl]

Oh hev, it must be so frightening for you both and very unsettling. It sounds awful, but I'm sure you'll get used to coping with them as time goes on (I know you don't want to get used to them, iykwim )

Hope you're both okay today. <'>

 

~ Mel ~

[Bagpuss]

Oh Hev, this must be really scary for you, thinking of you, and hope Steve is feeling ok <'> <'>

[David Matthew Baker]

I hope your both better now. That sounds really frightening. I expect you cope as well as any parent would if it was their child having one of their first fits. <'> <'> <'> <'>