Ketogenic diet in Florida

[Mummymagic]

Hi, we are back off to our happy place next August and my ds11 is on a 2 year ketogenic diet treatment for epilepsy. (Modified not classic) It's working miracles for us and has stopped seizures altogether - it's also improved his quality of life no end. The diet will still be in place when we go and it's vital we stick to it. We're travelling with friends and staying in a villa but hoping to eat out lots too. Just wondered if anyone else has any experience of this and any tips for treats in the parks and meals etc as don't want him to feel like he's missing out but also don't want to stop the other 4 kids getting ice creams, treats etc!

Thanks x

[BarryandCaron]

Hi, just want to say I'm really pleased to hear this diet is working for your son.

We tried it with our son many years ago but unfortunately it didn't work, mainly because of the different drugs he was on. We did try to follow it when we had a holiday in Rhodes. It wasn't easy because it was an all inclusive holiday but we managed pretty well.

Does your son have liquigen? I think you would need to take as many snacks as you can for your son. A lot of offsite restaurants have meal food values on their individual websites.

Caron

[Mummymagic]

Thankyou for your reply! Sorry to hear it didn't work for your son.
We are on 60ml liquigen per day which will be a bit of a nightmare to take with us! I'm planning to spend some time on the first day making a few snacks etc and I think meals should mainly be quite manageable - it's more the treat side that worries me if that makes sense as I don't want the other children to go without any but don't want him to feel like he's missing out if that makes sense! X

[BarryandCaron]

I'm sure you will be able to find some snacks that they can all enjoy.

[PENELOPE]

Only just seen this thread, can I ask what the diet is please? dd had her first seizure 2 yrs ago, was diagnosed in Jan 2016. It's not under control yet, she is still having seizures even though she is on 2g of kepra (sp) a day and a preventative for her tremors and migraines. Nobody has mentioned a diet yet to us, she is due to start a hormone replacement treatment soon as she also has a cyst on her pituitary gland. We are hoping that she can still complete uni this year, but not sure yet as she had a seizure during one of her final exams and we are still trying to find out whether or not she can resit it - Thanks

[Mummymagic]

Hi, not sure if I'm allowed to post the link but there's a charity called Matthews friends which has been massively helpful to us and if you go to their website they have much a better explanation than I could give of how it works etc. It's very strict and is tough to stick to but we've seen miraculous results off it where all ends etc failed. It doesn't work for everyone but you generally know within the first few months if it's going to work for you or not. It seems to be used a last resort in this country which i find ridiculous as although it's hard, it's a lot kinder to the body than meds!
If I can help in any way, please feel free to pm me xx