Hi Rose, sending an encircling rainbow of good vibes for your boy.
My son Annan started the diet about 7 weeks ago. He lost ketosis
early on too as he was given too much carbohydrates. We still havent
quite got his ketones consistantly high enough yet, sometimes it
takes a while to find the correct amount of calories they should be
on, and of those calories, what amount should be protein and carbs
and what of fat. Also, when the ketone level does reach and stay
where it should be, often it can be 3months before the full benefits
of the diet are seen-so my very experienced keto dietician tells me.
Have patience. It can be really frustrating waiting to get the diet
right, especially when that also entails watching them still having
seizures, but wait. My son didn't start rolling (was developmentally
3-4months)until he was 10months old, which ironically was when he
began having visable seizures. I had thought he had autism as he had
never made sufficient eye contact, stared at his crossed fingers,
found people as interesting as the curtain next to them, etc. His
MRI showed his brain was only 2/3rds the size it should be.
Extensive testing found no apparent reason, therefor nothing to
help. We tried 3 drugs, which didn't work and after a 2mnth fight,
my son started the diet. Annan is now 16.5 months old and in the
last 7 weeks since beginning the diet he has started sitting
independantly, making lots more eye contact, started holding his
arms out to be picked up, wriggling off my lap, saying mmmmmah to
me, is much more alert, started crawling and can now crawl from room
to room. He still has an average of 2 tonic seizures a day and we
are still using Phenobarb daily, but like Eric, Annan's brain
activity is constantly abnormal in EEGs, but thats what I think the
diet is helping with, even while we'r still fine tuning the diet. I
think the diet is helping to settle his brain activity over all and
thats why he's been able to develop so much since starting the diet.
He was 15 months old. Its not as if he was merely due to start
sitting independently and crawling! He is still Ataxic in his
movements (wobbly due to a lack of muscle control-from constant
abnormal brain activity), but this is also better in general on the
diet. Rose, I wish you and Eric all the best and hope you start
seeing improvements in him as I have with my little mystery boy.