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Here are some suggested organisations that offer expert advice on SN.

Starting ketogenic diet soon

(7 Posts)
needmorecoffee Fri 17-Oct-08 19:06:34

anyone else done it?
95% fat diet, no carbs and a tiddly bit of protein.
But if its sorts her epielpsy it will be worth it.
Bit worried about the high risk of kidney stones though sad

BriocheDoree Fri 17-Oct-08 19:10:01

That's good news though, isn't it? Haven't you been on the waiting list for ages?
'Bout time you were allowed some progress in some area of DD's life, isn't it...smile
Good luck!
How's DD getting on at school?

needmorecoffee Fri 17-Oct-08 19:14:37

yup, bout 6 months. god knows ho w many IQ points she has lost sad
She loves school and has no trouble fitting in with the non-disabled kids, its great. And seeing walking talking kids is so good for her learning.

PheasantPlucker Sat 18-Oct-08 08:10:25

Good luck, I don't have direct experience of it, but I did some fund raising for a lovely charity called The Daisy Garland last year, and Sara Garland there has lots of advice. I cannot stress how nice she is. And how hard she works getting funding for dieticians in hospitals to get more children to have access to the diet. There's a website.

Hope this helps you. Let us know how it goes.

needmorecoffee Sat 18-Oct-08 09:33:59

yeah, I've seen her site. We are very lucky as the PCT is now only funding the keto on a case by case basis and the dietician that does it never knows if she will have a job week to week. Its her energy and persistance that makes it available here in Bristol. Otherwise we'd wait a year for GOS and a year with lennox-gastaut syndrome is too long and causes irrepareable brain damage.
Funny how its ok to let children suffer and be more brain damaged but not let rich bankers etc etc etc angry

MeganH Sat 18-Oct-08 09:48:00

We did keto for a year. It was the MCT version, so more carbs but a bit of a battle getting the yucky MCT oil down!

It wasn't nearly as hard as I feared, you soon get into a routine. We found matthewsfriends.org wonderfully supportive and couldn't have done it without them as our dietician was useless and off with stress half the time.

It wasn't the miracle we'd hoped for but DS1 did improve considerably, possibly just because it gave us the courage to cautiously wean one of his drugs. We would have tried the classical diet but he was on Ethosuximide syrup which has loads of carbs.

Good luck!

needmorecoffee Sat 18-Oct-08 09:56:02

I am worried about her meds. We are going to do the classical to start with and if it proves hard she's getting a G-tube anyhow.
Someone told me her toothpaste will need chaging and even suncream can cause the body to come out of ketosis (and that makes me feel ill - how many chemicals is our skin absorbing in suncream!)
But if we can hold off lennox-gastuat syndrome it will be worth it. I don't mind a weekly seizure caused by her brain damage. Its sort of 'normal' but a syndrome like LGS has a high risk of death and more brain damage sad

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