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ketogenic diet, does anyone have any direct experience of using this to control epilepsy?

(6 Posts)
zzzzz Sun 23-Oct-11 11:30:25

Dd3 has been hospitalised again for her epilepsy and we are currently gaining some control with Topiramate but will be discussing ketogenic diet as a serious option with consultant in a few weeks.

I have 5 children in total so it will be challenging to say the least, but "a Mum's gotta do what a Mum's gotta do" so I am looking for insight if anyone has any. Particularly what was the most difficult and good recipe books [I thought we might try a few things before the consult so I had some idea of how hard it is going to be].

We are also thinking of trying a new [to us!] drug called Keppra so I would be interested in how it had sat with your kids/you if you have tried that on the way.

Ineedalife Sun 23-Oct-11 17:31:43

My niece was on the keto diet for a couple of years. She has Lennox Gauset syndrome[sp]. She went from having literally hundreds of siezures every day and being totally unable to learn or even focus on anything to having just a few a week.

It made an amazing diffierence to her life. She isn't on it anymore and I am sorry but I don't know what drugs she is on. I do know that the keto diet is only suitable for some people. It was a hard diet to do and my Dsis was very dedicated but I suppose when you see such a difference it made it worthwhile.

Good luck what ever you decidesmile.

zzzzz Sun 23-Oct-11 21:48:08

Thanks Ineedalife our consultant thinks it is a good option and is giving us time to get over the last few days [we have been in hospital trying to regain control] and then we are meeting to discuss in detail in a few weeks.

I guess I was hoping there would be someone who could give us their story, though Mattewsfriends and daisygarland have great websites. To be honest I should probably stop google-ing and just exist for a bit.

DJAngel Mon 24-Oct-11 11:55:52

I think the Matthews friends website and forum are the most helpful. I know 2 Mums with kids on it.. It is hard work but if it improves things then is worth it, but one Mum had fab results and the other has had barely any change at all but is still persevering with it. There may be some info on Parents forum of NSE website as well.. ( views on Keppra there too I would think) There could be a waiting list to get access to a dietician so I'd ask to be referred anyway and then you can think about whether it will be right for you while you wait.. Sounds very tough for you all and with 5 kids!! Makes me feel a bit faint just thinking about that!

Chundle Mon 24-Oct-11 12:54:24

Hi zzzzz I was on the ketogenic diet as a child and it worked ok for mr. Can't remember much about it as I was young but my mum used to do separate meals for me and my sister. I was fit free for a year onthe diet which was an amazing difference from 1-2 a day.
Have you seen the ion First Do No Harm? True story about the diet it has some links at the end of film I believe.
Alternative to Meds are always worth a try I believe

Chundle Mon 24-Oct-11 12:55:10

Sorry forgot to add I relapsed after the year but was still worth being on it. I'm now on topirimate with reasonable effect

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