Update on Fatzak's DS - one year on!!

[fatzak]

Realised that I hardly ever post over here any more! I also realised today, as I was watching DS bomb around the skatepark on his scooter, that last year at this time, he was hooked up on HDU being pumped full of horrific drugs to try and stop his non convulsive status. What a difference a year makes.

Since starting the ketogenic diet (it'll be a year on May 10) DS's life has been transformed! He has gone from literally thousands of absences seizures a day, plus five or six full blown tonic clonics in the night, to just teeny micro seizures during the day. His last EEG still picked up quite frequent epileptic activity, but the tiny brief jerks that he has are so short he can just carry on with what he is doing, and most people don't even notice them!

We have our normal family life back and DS is pretty much like any other 8 year old. He has adapted to the diet amazingly and rarely complains or asks for food he knows he can't have. I just wish that this option had been available for us before we had to start the horrific journey of medication after medication.

Thanks for the update. Glad it has been good news for you!

It was nice to read your update - seems things have turned out well in the end

That's fantastic!

Fantastic news, my niece who is 16 was on the keto diet for a few years and it made a huge difference to her, she is off it now but still having less seizures than before the diet.

Good luck.

Fatzak, I was briefly around on your threads this time last year. I am v v happy for you - and afaik keto doesn't have to be for life (at least that's what the film said? - correct me if I am wrong!)
Quite understand what you mean as my ds life was also transformed on (gluten-free) diet and I had briefly considered keto before then (if gf hadn't worked we would have gone keto).
It also hurts me that no one in previous 10 years even suggested a diet (we did it totally alone as a trial) but at the same time I am happy that we can do diet with no medical interventions/appointments and trial and error with meds. I wish diet info was freely available from drs surgery.