Re: Update-Emma

[Guest guest]

Emma,

I haven't been following all of your posts but 's left sided weakness

in the morning caught my attention. My daughter, Shan, has had the same

problem. After being on the diet for about 6 months we finally weaned the

last med completely. She no longer was having awake seizures but with the

drop of the last med she developed severe tonic-clonics (1-2 min.) that

happened every 3 hours while asleep. After 2-3 weeks her left side was

nearly paralysed. She had to use her right arm to lift her left arm and her

walk was very unstable. We ended up giving back a small dose of tegretol

(changed later to trileptal) at night only and the seizures reduced

significantly to about 1 a week (now we can go several weeks or even a

month). Lately she has been having more seizures (1 every 1-2 days while

sleeping) but it is dietary related. Sometimes she will wake up feeling a

little weak on the left side (her seizures come from the right frontal

lobe). We found with her that if she is having early morning seizures it is

ketone related, too low. From past experience, we have found that sudden

low ketones for Shan are related to any of the following: a change in fat

source, weight gain, or insufficient calories. We had changed her main fat

from olive oil/butter/cheese to sunflower leading to minimal or no ketones.

Being people who sometimes feel like we need to make more than 1 change at a

time during an emergency, we raised her ratio to 1.5, changed fats to olive

oil and butter, and decreased her calories to get her ketones raised

quickly. The reason we decreased her calories was because we have known

for a several months that she was very close to having gained too much

weight over the past 1-2 years. Presently she is producing adequate

ketones and we are watching her very closely. I expect we will have to

reduce her ratio in a couple days. I don't know if any of this will be of

help to you, but I thought that I would share our experience with you in

hopes that something might be of help to you.

Rhonda (mom to Shan, age 9, keto/atkins over 2 years)

is okay - his blood tests and gases have come back and his

consultant is happy with them all. He is not acidic, he is alkaline -

can you explain to me what the importance of these two are (sorry if

I am sounding thick here). His glucose blood readings are coming

down in the mornings, they are averaging about 3.9 whereas before

they were 4.8 and 4.9, we have kept the calorie increase at 400 cals

at the moment - but think that we will have to reduce slightly once

this settles down. is tending to have about 3 seizures early

morning and be a bit wobbly/spaced in the mornings but then get

better in the afternoons. His ketones are not as high especially in

the morning so I am adding more MCT oil to try and get ketones up -

but at the moment not having much luck! Will keep going with that

one.

The one thing that is worrying me is that when he wakes up in the

morning he has lost the use of his left side. It is after these

early morning seizures and it is like he can't put any weight on his

left leg. He certainly can't walk without a lot of support. These

seizures are really affecting his left side at the moment.