Hi. My name is Alison. My husband's name is William. We have 2
children- John age 3
years2 months, and Callie age 15 months. Our son John has MAE. He
was diagnosed at long
last in Feb of this year after 5 months of seizure activity. He was
having 1/2 dozen seizures
a day with only one brief honeymoon period on zarontin in May. He
has been on phenobarb,
depakote, zonegran and zarontin. Currently he is on depakote 325
daily and zarontin 250
and has now been on the keto diet for 1 month. His seizures are
dramatically reduced, but
we are having some serious problems with ongoing lethargy and refusal
to eat.

We started as all keto kids do on a 4:1 ratio and now are on a 3.5 to
1 ratio. His lethargy, low
energy, weakness, poor appetite and sad mood persist despite a
reduction in his medication.
We are going to go to 3:1 ratio on Monday as our neuro thinks that
his symptoms are all due
to excess ketosis.

How many of you have gone through this? I am finding his weak sad
self to be so pitiful and
almost as distressing as his seizures. I know logically that we need
to persist because his
seizure activity is what will most affect his long term outcome, but
I am my heart is aching to
have my happy, energetic boy back. Any words of advice or opinions
would me most
appreciated. Alison Reinecke