Skydive help

Re: Skydive help

Anonymous — Thu, 25 Nov 2010 16:35:48 GMT

I cried reading this - certainly puts things into perspective

Re: Skydive help

Arlo Guthrie — Wed, 24 Nov 2010 08:14:16 GMT

[quote user="Twindy RVN"]

[quote user="Arlo Guthrie"] But thus far, Emily seems to have avoided the worst ravages. Whilst 'a little behind' due to the amount of time off school, and the effect of the various drugs, she seems remarkably unaffected between seizures.[/quote]

I'm sure you have done loads of research, but from 1st hand, I thought you would like to hear about my niece. She suffered from epiliepsy from toddler age and was taking large amounts of medication before starting school. School was a struggle at first and she was behind due to falling asleep during class and missing school.

But..her medication has settled, she rarely suffers from drowsiness and has caught up well at school. She is starting secondary school next year.

I'm sure every case is different, but it might help to hear how "normal" her life is now!

[/quote]

Thanks Twindy, it is nice to hear of children that have grown out of it - does give me some hope that Emily might. It's a small hope, though - her specialist reckons there's a greater chance that she's stuck with it.

Then again, one of the most shocking things is just how little the scientists and doctors know. Really, they are doing little more than offering an educated guess.

Re: Skydive help

Caro Laithwaite VN — Wed, 24 Nov 2010 00:57:43 GMT

Thanks Kim

Re: Skydive help

Kim Buckley — Tue, 23 Nov 2010 22:58:58 GMT

[quote user="Arlo Guthrie"]

[quote user="Kim Blowing RVN"]It's such a sad story Arlo[/quote]

Oh dear, I didn't mean to come across all sad! I'm really quite matter-of-fact about it all, and our daughter gives us so much more pleasure than strain (and you're right, it is a pretty big strain at times). So on balance, things could be a lot worse!

[/quote]

Sad was the wrong word. I don't know what word I mean though hmmmm.

Anyway I just have so much respect for parents who have children with difficulties because it must be hard not knowing what the future will bring. Saying that you probably appreciate and enjoy your daughter a lot more because of it.

Oh and I have got someone else to jump! She is a member on here but rarely comes on and I mentioned it to her today and she would love to do it! Caro I will send you her details!

Re: Skydive help

Tracy Windler RVN — Tue, 23 Nov 2010 21:25:33 GMT

But..her medication has settled, she rarely suffers from drowsiness and has caught up well at school. She is starting secondary school next year.

I'm sure every case is different, but it might help to hear how "normal" her life is now!

Re: Skydive help

Mrs Dot Dot — Tue, 23 Nov 2010 21:08:31 GMT

[quote user="Dippy"]

[quote user="Mrs Dot Dot' Tracey Plant RVN MBVNA"]

as long as I can close my eyes when I jump and hopefully open them pretty soon after so I don'y miss the view I'll be ok...!!

[/quote]

I found closing mine for the duration helped

[/quote]

Hahaha! I'll have to wait and see........... or not as the case may be.....!

Re: Skydive help

Dippy — Tue, 23 Nov 2010 17:00:23 GMT

[quote user="Mrs Dot Dot' Tracey Plant RVN MBVNA"]

as long as I can close my eyes when I jump and hopefully open them pretty soon after so I don'y miss the view I'll be ok...!!

[/quote]

I found closing mine for the duration helped

Re: Skydive help

Mrs Dot Dot — Tue, 23 Nov 2010 14:51:29 GMT

I ditto Kim... I did Go-ape this weekend in preparation of throwing myself out of a plane next year.!!.. the maximum height was all of half a tall tree!! I'm not great with heights but as long as I can close my eyes when I jump and hopefully open them pretty soon after so I don'y miss the view I'll be ok...!!

Re: Skydive help

Arlo Guthrie — Tue, 23 Nov 2010 13:46:20 GMT

[quote user="Kim Blowing RVN"]It's such a sad story Arlo[/quote]

[quote user="Kim Blowing RVN"]I can't wait to throw myself out of a plane to raise some money for such a worthy cause[/quote]

THANK YOU I think the research this charity has supported is particularly important - i.e. identifying faulty genes and then using that information to offer more accurate prognoses, and find which treatments are most effective. Aside from that, their epilepsy alarm scheme and the support they give parents embarking on this somewhat lonely journey are well worth supporting.

Re: Skydive help

Kim Buckley — Tue, 23 Nov 2010 11:13:42 GMT

It's such a sad story Arlo and it must be a massive strain on you and your wife. I know how much I hate seeing animals seizuring so can't even begin to imagine what it must be like seeing your child like that.

I can't wait to throw myself out of a plane to raise some money for such a worthy cause (although I don't really need an excuse as I've always wanted to do it )

Let's hope that one day more is known about the condition and more can be done to control it!

Re: Skydive help

Arlo Guthrie — Tue, 23 Nov 2010 10:02:41 GMT

Really no need to thank me for this site But I am rather more shameless about the need to help children with epilepsy (not just my own, there are 70,000 in the UK).

I was asked to write something about my experiences with epilepsy and how the Maxwell Muir Trust has helped us. In case of interest, here's what I wrote:

The first time our daughter had a fit, at about nine months old, we thought she was dying in front of us. It wasn't a passing thing: she hadn't recovered by the time the ambulance arrived half an hour later, or for some hours after we got to the hospital. That was followed by the worry of what caused it. A brain tumour? Thankfully, an MRI proved otherwise. But the first diagnosis was hardly more comforting. It was Dravet's Syndrome, we were told, a particularly catastrophic (their word) form of epilepsy which causes the child to progressively lose cognitive skills. We were sent away with rectal valium (we were living in France, and the French seem peculiarly fond of delivering medication up the bum), and told that we should administer it within 30 seconds of the start of another seizure, or risk Emily suffering brain damage. 30 seconds. It's not even enough time to go to the loo. Anyway, for more than a year, Emily didn't have any more fits and the original diagnosis was starting to look flawed. We began to relax. My wife even went to the loo, finally.

Then, out of the blue, they started again. This time, more frequently, settling into a pattern of about one a month. Again, we couldn't afford to take our eyes off Emily for a minute. We installed 'Emilycam' in her bedroom, so we could check she was OK on the TV without disturbing her. We moved back to England (living in France was proving too isolating). Then, last October, she fell off a cliff, metaphorically speaking. She went from having one seizure a month, to more like one a day, and sometimes ten in a day. Most of them are a bit of a blur. Except the one that happened in the middle of the high street in the local town, where we remained in the pouring rain, holding up the traffic for 45 minutes before the ambulance finally arrived. And the one at 3:00 one morning which failed to stop after she'd had the valium. The ambulance service couldn't tell us when they'd arrive. Since we'd been told 'brain damage if not treated within 30 minutes', I shoved her in the boot of the car with my wife, put our other child in the baby seat, and drove like a Palestinian terrorist to the local hospital, nearly falling off the road more than once.

Soon after, we discovered the Muir Maxwell Trust, a charity that supports research into childhood epilepsy, and families affected by it. The charity supplied us with an alarm system that sounds if Emily has a fit at night. Aside from the benefit of having our bed to ourselves once more (since falling off the cliff, Emily had slept with us for about nine months), it has quite possibly saved her life. I was woken by it one night to find Emily fitting, face down in her pillow.

Also thanks to work started by the Muir Maxwell Trust, Emily has now had a genetic test which has given a diagnosis of Severe Myoclonic Epilepsy Borderline (SMEB), a sort of cousin of Dravet's Syndrome. Some texts say the prognosis for SMEB is the same as that for Dravet's. But thus far, Emily seems to have avoided the worst ravages. Whilst 'a little behind' due to the amount of time off school, and the effect of the various drugs, she seems remarkably unaffected between seizures. Ironically, that is one of the biggest challenges of her condition. Most children that have as many seizures as she does, have them secondarily to some other catastrophic condition, like cerebral palsy. So when we plan for almost any aspect of her, or our lives, from something as simple as going for a walk in the countryside to the protocol her school needs to follow, we're kind of making it up as we go along.

If you stick your head in a tiger's mouth enough times and it remains on your shoulders, a tiger becomes less frightening. So it is with epilepsy. We've become quite matter-of-fact about it. Still, just beneath the surface, there are a hundred things to worry about. Daily, will she have a bad accident? Will she regress, and lose cognitive abilities? Will she be taunted at school? Will she ever be self-sufficient, even in adulthood? Worst of all, will it kill her. Epilepsy does kill, and not just through accidents and suicide, but because it seems the condition can cause the heart to stop.

Something like 70,000 children in the UK have epilepsy. 30,000 have uncontrolled epilepsy. 15,000, (of which Emily is one) have uncontrolled, chronic epilepsy. Even for those that achieve control, it usually comes at a price: the drugs have powerful side effects. You could argue that since the severe form of the condition affects so few people, it doesn't deserve support. On the contrary, it is by investigating the severe cases that the leading lights in this field believe that they will find the answers for ALL epilepsy sufferers, of which there are an estimated 60 million worldwide.

Re: Skydive help

Caro Laithwaite VN — Tue, 23 Nov 2010 09:25:16 GMT

Bumping this up everyone who offered to help please let me have your details we need to get more jumpers come on folks this is as a thank you to arlo for the site and to help kids with uncontrolled epilepsy please let me have your emails and get the info circulating with your friends pull them in vet staff or not!!!

Re: Skydive help

Emma Purnell — Thu, 18 Nov 2010 20:22:36 GMT

No red faces, thank you both!

Re: Skydive help

Vicky RVN — Thu, 18 Nov 2010 20:22:10 GMT

Hehe, better twice than not at all!

Re: Skydive help

Caro Laithwaite VN — Thu, 18 Nov 2010 20:20:12 GMT

Ditto l need to go clean this house and 2000 other jobs (is way of dealing with red face)

Re: Skydive help

Vicky RVN — Thu, 18 Nov 2010 20:09:46 GMT

Done

Re: Skydive help

Emma Purnell — Thu, 18 Nov 2010 19:57:40 GMT

Please send some info to me at emma.kerry@vetnurse.co.uk

Re: Skydive help

Vicky RVN — Thu, 18 Nov 2010 18:02:22 GMT

Ooooh so exciting having our first donation, thanks Mrs D