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bloody bastard epilepsy again

(27 Posts)
sarah293 Tue 17-Jun-08 17:23:54

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LMAsMummy Tue 17-Jun-08 17:28:06

So so sorry about these seizures. I don't know much about myoclonic seizures but thinking of you

HairyMaclary Tue 17-Jun-08 18:46:18

oh no! Does this mean that you will have to endure another round of steroid treatment or can they try other things first?

2shoes Tue 17-Jun-08 18:59:55

what is keppra?

persil36 Tue 17-Jun-08 19:20:11

very sorry the keppra doesn't seem to be working very well. hope things improve soon.

TotalChaos Tue 17-Jun-08 19:20:47

sorry wrong login before!

sarah293 Tue 17-Jun-08 19:36:05

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HairyMaclary Tue 17-Jun-08 19:54:12

I met a 6 year old with fairly mild CP who we have seen on and off for the last 2 years last weekend. She had an awful time about 12 - 14 months ago with epilepsy, absolutely nothing was stopping it. She started on a ketogentic diet about 8 months ago, has 4 feeds through a G tube and then salad and butter basically! It has made a real difference and while she still has fits it's all becoming managable. Her Mum was saying that it was only for 2 years.
I'm sure you know all about this though but it was so good to see this little one looking so healthy on such a restricted diet!

HairyMaclary Tue 17-Jun-08 19:55:12

ooh sorry, first sentence doesn't make sense, but I hope you know what I mean!

LMAsMummy Tue 17-Jun-08 19:56:41

Riven, I was going to mention ketogenic diet, but didn't want to presume anything. A friend has a daughter who has just started on it and says it works very well for her. The Dietician is at a hospital and funded by The Daisy Garland Charity.

misscutandstick Tue 17-Jun-08 19:58:06

oh riven sad im so sorry to hear, ive been following your threads over the last few days, i know you are having a really hard time of it at the moment. Im so sorry. {{{hugs}}} love and thoughts. XXX

Seuss Tue 17-Jun-08 21:26:58

sadSorry you're having a tough time, take care of yourselves.

wrinklytum Tue 17-Jun-08 21:46:33

sorry you are both going through this,Riven.Sending big virtual hug xx

mummypig Tue 17-Jun-08 22:08:06

riven, so sorry to hear this sad hugs

Arabica Tue 17-Jun-08 22:30:17

Thinking of you.

r3dh3d Tue 17-Jun-08 23:12:17

Thinking of you Riv - having been through the "nothing works" thing and only escaped by the skin of our teeth and (as far as I can gather from the Neuro) severely against the odds.

Have they talked about VNS? It's always been fairly high up our list of Things That Might Happen when The Drugs Don't Work - but I don't know if it gets suggested to everyone.

sarah293 Wed 18-Jun-08 08:14:46

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Ryobi Wed 18-Jun-08 08:19:13

oh riven, how worrying for you I do hope things improve x

bigcar Wed 18-Jun-08 12:04:44

So sorry to hear that riven, hoping the doctors appointment goes well.

caitlinnjacksmummy Wed 18-Jun-08 13:04:20

Thinkin of you riven, as u know, my story with Jack is fairly bad 2, big kisses and hugs, from me Jack N Caitlin, Jack improving loads right now...Celyn will too...give her and u a big cuddle from ussmilexxxxx

Daisydot Sun 20-Jul-08 09:28:40

Riven,

Hi, I'm Sara Garland from the Daisy Garland charity. A charity set up in memory of our daughter Daisy, who died of SUDEP (sudden and unexpected death in epilepsy patients) just 3 days after her 6th birthday.

The charity has helped to fill a massive gap in our lives and one of our aims is to fund as many 'Daisy Garland Ketogenic Dietitians' as we can in the UK. (An area that is painfully underfunded). We have funded dietiians at the following hospitals: St. Georges in London, Guy's and St. Thomas in London, Derriford in Plymouth, and most recently Nottingham Children's Hospital.

Daisy was on this diet for four and a half years, and I can honestly say it was an absolutely wonderful diet in terms of seizure control, and development progress.

No AED worked for Daisy, and Daisy would have over 100 seizures a day. Her longest status lasted for six and a half hours. The diet stopped her seizures and allowed us to wean all her drugs.

I know how desperate you are feeling about your daughter, epilepsy is the most awful of conditions and my heart would break into tiny pieces every day as I sat and watched Daisy go through more and more seizures.

I can highly recommend the diet - it's just brilliant. Please log onto our website at:
www.thedaisygarland.org.uk and visit 'Daisy's Cafe' where you will meet other mums in a similar situation as yourself.

If you need to chat about anything, please feel free to call our charity helpline and ask for me.

I have lots of info on the diet that I can send you if you contact us with your address. That way you can make up your own mind as to whether you'd like to try the diet.

I wish you lots of luck and hope to chat soon in 'Daisy's Cafe'.

sarah293 Sun 20-Jul-08 09:30:30

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jimjamshaslefttheyurt Sun 20-Jul-08 09:54:28

Is the dietician at Derriford new? I had a friend whose dd had to try the ketogenic diet and I'm sure she had to go up to GOSH or somewhere- this was quite a while ago. Being able to access help at Derriford would have made a difference.

Thanks for the information - it sounds a really useful thing you're doing.

Tclanger Sun 20-Jul-08 10:06:36

Message withdrawn at poster's request.

PheasantPlucker Mon 21-Jul-08 09:04:40

Dear Sara/DaisyDot,
Thanks for the post. Good luck with all your excellent work. I am sure some people here will benefit from the link and the diet.
We have spoken/emailed before (under my 'proper' name) so I know how fabulous your chariy is!

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