My special needs son is on the classical ketogenic diet (ratio 4:1) for over 5,5 years now. He has Lennox Gastaut syndrome caused by braindamage (history of severe hypoglcaemia within 2 days after birth.) He developped seizures at age 1,5, at age 3 he suffered all types of seizures you can think of, all day and night long. His EEG was showing epileptic activity 90-99% of time. He has tried 10 different meds in several combinations and they all didn't help a bit. Only gave him all kinds of side effects.
He started on the diet at age 5 while he was using Topamax and clobazam. Ethymal was weaned off before he could start on the diet because of the calories in the sweetners.
I'm convinced it's best to wean off meds that don't work and/or interact with the diet negative before starting on the diet.
The diet was succesful within 1,5 week. It was amazing, his usual seizure pattern changed immediately and we saw a seizure reduction of 75%, even while he wasn't in adequate state of ketosis yet.
We have finetuned the diet in about six months, we had to reduce calories and weaned off topamax (because of high risk to kidney stones combined with the diet.) After 6 months on the diet he had a 90% seizure reduction and his EEG was disturbed for less than 30%, an amazing improvement considering he has LGS.
In the next year we weaned off clobazam (pffft, a difficult and long term traject with a lot of breakthrough seizures.) and for the next 3 years we had a boy with only incidental seizures, only breakthrough seizures in periods of illness or inadequate ketosis.
Since 2008 we've had more and more trouble maintaining ketosis, we had to adjust and adjust the diet, and at this moment he has (too) many seizures (absences, 'big stiff cramp' tonics and tc's.) As a side effect he has developped constipation. But he still is far better than he was before the diet so we still are busy finding the status quo again. Each time we try to wean of the diet a bit, seizures increase bad, showing the diet still is working for him.
I do fear the day the diet won't work anymore as my worst nightmare. He is resistant to all AEDs so we don't have any alternatives. He's not a candidate for surgery or VNS. One thing is for sure: he won't be seizure free, it's our task to do our best to reduce his seizures as much as possible and for now, the diet still is helping us to do so.
In my experience the diet is a way to help him myself, a succesfull way which feels GREAT, we (his dad and I) are the ones ajusting, finetuning, calculating, cooking, shopping for meals, ingredients and supplements. Only occasionally we consult his keto dietist. On meds it was the other way around: his neurologist was the one deciding, trying meds, calculating, ajusting and was pulling all strings.
The diet is not easy to manage. It's very a restrictive diet and it has to be calculated (individual diet and each meal or snack) very precise. The diet does take a lot of effort and commitment in the first 6 month for both kid and parents. But kids as well as parents do get used to it and in time you both won't know any better. When effective, the diet is worth all effort, that's for sure!
p.s I saw Matthews Friends is ajusting their website right now (forum is accesible.) I do hope it will be online soon, there's a lot of information there. Worthwhile to check out later.