Ketogenic diet

[needmorecoffee]

its all systems go for the keto diet now with dd. Got a months worth of tests to do first then we're off.
Anyone else on it or done it?
And for the first time, having quadraplegia is in our favour. DD wont miss certain foods or be able to break the diet herself!

Is this the diet where its all high fat? If so then a friend of mine said it made a huge difference to a little girl who she worked with in that it was the only thing that seemed to help with her fits.

Good luck - i hope it works out x

yup. dd is still having fits and we are worried thhey will start to impact on her intellect.
Really hoping this one works a she's tried 7 meds and the next thing is brain surgery!

I really hope it works as well for her as it did for this other little girl then as my friend told me the reduction in the intensity, frequency and duration of her fits was incredible when she was on this diet.

Fingers very tightly crossed for you, NMC. Who are you under for this? (as it were, ha ha)

We've not tried it I'm afraid - it's on our list of Things We May Have To Try One Day - ruled out for surgery though VNS still an option. But have heard great things about it.

Kathy Lord at Southmead hospital in Bristol. She seems very nice.

nmc good luck i really hope this works

Good luck with the new diet.

I gather the diet is to reduce/prevent your dd's fits (I have no experience in this area) but, out of interest, what does the diet actually comprise and prohibit?

the diet is abut 95% fat in the form of cream and butter and oil. No carbs allowed and a tiddly bit of proetin. There's a list of vegetables we can use. So we can make cauliflower cheese with cauliflower, cheese, double cream and water. No flour.
All her meds need changing to carb free versions as she must be kept in ketosis and we have to test her urine twice a day and her blood every other day - using a sort of prick thingy that dibateics use and a testing kit.

hi nmc - we did it for a year!

It wasn't nearly as hard as I feared; you soon get into the routine. Unfortunately we had a useless dietician - we were her first and I honestly don't think she was that interested. We battled to stay in ketosis (crucial for seizure control) due to her crap calculations, and it was only with the support of Matthews Friends that we managed to stick it out.

We didn't get the miracle everyone hopes for but plenty of the kids do - some inspiring stories on www.matthewsfriends.org. What we did manage was to reduce the number of drugs DS1 was on, not sure if keto was helping with seizures while we weaned, but it gave us courage and determination, and he was SO much better afterwards on just one drug.

if dd has less seizures we will wean the vigabatrin. She's been on it 4 years and it can cause vision loss. Plus mental slowing.
It would be nice to get her onto one med only.
I don't think diet wise will be too hard as dd only eats limited stuff, can't break the diet and we never eat out so no worries there.
The dietician seems pretty good - she's the only one doing the diet in this area.

OK, lots of fat, so what's the theory behind the diet and seizure control - is it anything to do with the brain being made up of fatty material?

no-one knows whay it works. Its actually the ketosis that seems to do it but you can't starve people. So the fats are to keep the calories up while the body then goes into ketosis due to no carbs. But its not known why it works.

Not being nosey here, just genuinely curious...if they don't know why it works, then are they trying to find out? Using your dd perhaps?

Hope it brings good results anyway.

no, its been used on thousands of chldren and adults for decades. Works for about 70% of them.

Yes, I had heard of it way before I joined here. Think I read an article somewhere, sometime. I don't recall figures but remember it having a positive outcome in most cases. 70% sounds excellent - well worth trying.
Do you mind me asking NMC, will you get any financial help to fund the diet? I know it is high fat and available, but will it not mean, if not 2 lots of shopping, then an increase in your shopping bill? Just curious really. I can imagine its a big expense when you have other mouths to feed too?

no we don't. I've only just thought about the shopping bill to be hoenst. espcially given that we will use organic cream, cheese and butter.
But the Guvmint will say your DLA is meant to cover all expenses to do with a disabled child. As if its stretchy or something
And yeah, I also feed 2 teenage boys.

And at the same time, if it works, and her meds reduced then you are saving the NHS a lot of money out of your own pocket. Seems wrong to me.

arse. I honestly hadn't thought about the cost. Guess we'll have to cut down elsewhere but I'm buggered if I know where

You probably save money, as the portions are so tiny. And you stop buying so many cakes, sweets etc. as you don't want to be eating them in front of your child who can't have any!

I don't buy that stuff anyway. Our food budegt is pretty strict cos we are so skint.

I wouldn't want her to be mostly tube fed.
As it is, having seen weight charts for kids with quad CP I am re-assessing the tube decision. dd is off the bottom of the non-disabled charts but around the 50th centile for charts for quad CP. That means she might not need the tube thank god.
Saw the dietician and she says squash is keto friendly. dd already has one meal that is squash (butternut) and butter and cream. Easy to keto.
wondering about breakfast though.

Good luck with the keto diet. It's a truly AMAZING diet.

Please check out our website at
www.thedaisygarland.org.uk for more details on the diet.

It would be great to chat to you in Daisy's Cafe - our parent support forum which you can access via our website.

With best wishes,