Re: Left Sided Weakness/Rhonda

[Guest guest]

Rhonda,

Thanks very much for that - it has been a huge help. has

suffered with insufficient calories and was in a sort of catabolic

state last week going from maybe 1-2 seizures per week to over 60!

This is the second morning that he has woken up with real weakness on

the left hand side - so much so that he can't really walk with it.

It gets better throughout the day as he ketones rise.

This morning it was particularly bad and so were his ketones - 0.8 on

the bloods! I am now going to use more MCT oil this evening in an

attempt to get his ketones up through the night and higher in the

morning. I am thinking of putting back to a 4:1 ratio as

well as he is currently on a 3.5:1 just to get the ketones higher.

I think he has not been having enough calories for a while as his

weight has not really changed over the past year and I have a feeling

that this is going to take a while to rectify and there will be some

more tweaking needed.

Thanks again Rhonda.

Take Care

Emma. Mum to .

> 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.