I cannot begin to tell you how much I appreciate your help….

big warm hug, a million thanks and 3 Dutch Kisses.

thanks Dutch Mom, going to be a hard search but one I am going to look seriously into.

Dutch Mom,

Hello again :-) do you have any address for Ketogeen dieet for adults in NLD?

Good morning to you. Goodnight to me, it's 1:45 am.

for you

Hi Dutchmom, Thanks for the tips on that really fun word game. How did you get the bold-print for the next word? PS. How is the weather in the Netherlands? And the living conditions? I am thinking more about moving there. It is so nice. I have only seen Amsterdam.

Dutch Mom

(I see your son is 12, last year). I see you've been at this a while. My daughter's seizures started when she was 10.

Again Hi Dutch Mom (I didn't realize there was a character limit to the messages

The reason I'm back on is because we cannot find many similar cases to ours online at all. India (my now 15 year-old) has myoclonic absence head-drops every 15 - 30 seconds which last 2-10 seconds throughout the waking day and has developed severe difficulty using her limbs and hands to the point that we need to feed her and help with (very short) walks. She's had T-C's periodically as well.

I'm trying to find cases with similar histories to try to make sense of this thing.

How old is your son? He looks like a happy kid from the picture

Hi Dutch Mom

Thanks for the welcome (a little late - I haven't been on for a while ).

The MCT diet worked for a year and then gradually stopped working. At just shy of two years we had to stop it. My daughter's epilepsy - which is still undiagnosed officially - has mutated to include myoclonic tremor and jerks and is currently being treated with a combination of medications (Clobazam, Clonazapam, Keppra, and recently re-introduced Valproic Acid), supplements and micronutrients (Vitamins B-complex and D, and Omega-3 oil, Taurine, Magnesium, Manganese, 5-HTP, iron etc.). Quite a regime but much easier than the MCT oil diet. We're in the process of a Clobazam wean and hopefully we'll be able to reduce, or if we're lucky, eliminate the Clonazapam as well.

We had such difficulty getting our teen girl to accept the MCT diet that we have no hope of getting her to tolerate the classic Keto I'm afraid. It's not really an option open to us anymore.

hope all is well
Nick