Re: low ketones and seizures!

January 1, 1970

on 7/19/04 11:22 AM, caronath at caronath@... wrote:

,

I revew all the food for aël but I think I've made a little

mistake...When I've calculated the calories I took his weight which is

under the normal weight and not the ideal weight...

aël is 6 years old, weight 18 kg and 1 . 21 meter...

He's on ratio 4.1

I've found:

proteins 20 g/day

fat 120 g/day

carbonhydrates 10 g / day

calories 1224/day

So one type menu is (just since yesterday!before it wasn't that at all!) :

cream at 36% 40 g

vegetables group A 35 g

ham 18 g

oil 14 g

I use olive oil

And he takes 4 meals/day

He doesn't drink a lot, only about 1/2 liter a day.

Flax oil is forbidden in France and coconut oil very hard to find, I

haven't got yet

Thank you for helping me, I'm so glad I've found your group!

Carolyn, aël's mum

Re: low ketones and seizures!

Hi Carolyn

I'm sorry you're going through such a difficult time.

What meals are you giving ael? What fats are you using? Would

you like to tell us exactly what food he has eaten, including how

many grams of each thing and we could perhaps check that the

calculations look right for you.

What drinks does he take?

A couple of oils to use to for high ketones are:

Coconut oil - this a white fat which is solid at room temperature, I

find it perfect for frying mushrooms in, as they absorb a lot of it,

and I seem to remember ael is on 5:1 or have you changed that?

Flax oil - you will find this in the health shop, in the

refrigerator. You only use a tiny bit, and the taste is quite

strong - nutty flavour. Francesca likes it.

Do you have ground almonds and/or desiccated coconut/macadamia nuts?

I can give you a cookie recipe, which Francesca has for her bedtime

snack and she always wakes with good ketones in the morning. It does

use coconut oil, but you could use butter instead until you find some

coconut oil.

I'll be around for the next hour or so, but then I'm out for a while,

but I should be able to answer this evening otherwise.

Keep calm and take care of yourself as well as ael - easier

said than done I know.

, Mum to Francesca, Keto Kid since Sept 03, drug free since May

04

>

> Hello,

>

> aël is having very bad time seizures every 20 or 40

mn ,I've just check his blood ketones and he's 1.1 mmol!!!!

> How can I do to increase the level?

> thanks

> Carolyn, Nath's mum

>

> --------------------------------------------------------------------

------------

>

July 19, 2004

Carolyn,

I don't know what your son's ratio is at or the details of your situation,

but there are a number of ways you can increase ketones. Some ways are to

decrease the calories (if appropriate), increase the ratio, increase the use

of certain oils (coconut, flax, olive oil). I expect that as morning comes

to those in the U.S. you will get more replies to your question.

Rhonda

Hello,

aël is having very bad time seizures every 20 or 40 mn ,I've just

check his blood ketones and he's 1.1 mmol!!!!

How can I do to increase the level?

thanks

Carolyn, Nath's mum

July 19, 2004

Hi Carolyn

I'm sorry you're going through such a difficult time.

What meals are you giving ael? What fats are you using? Would

you like to tell us exactly what food he has eaten, including how

many grams of each thing and we could perhaps check that the

calculations look right for you.

What drinks does he take?

A couple of oils to use to for high ketones are:

Coconut oil - this a white fat which is solid at room temperature, I

find it perfect for frying mushrooms in, as they absorb a lot of it,

and I seem to remember ael is on 5:1 or have you changed that?

Flax oil - you will find this in the health shop, in the

refrigerator. You only use a tiny bit, and the taste is quite

strong - nutty flavour. Francesca likes it.

Do you have ground almonds and/or desiccated coconut/macadamia nuts?

I can give you a cookie recipe, which Francesca has for her bedtime

snack and she always wakes with good ketones in the morning. It does

use coconut oil, but you could use butter instead until you find some

coconut oil.

I'll be around for the next hour or so, but then I'm out for a while,

but I should be able to answer this evening otherwise.

Keep calm and take care of yourself as well as ael - easier

said than done I know.

, Mum to Francesca, Keto Kid since Sept 03, drug free since May

04

>

> Hello,

>

> aël is having very bad time seizures every 20 or 40

mn ,I've just check his blood ketones and he's 1.1 mmol!!!!

> How can I do to increase the level?

> thanks

> Carolyn, Nath's mum

>

> --------------------------------------------------------------------

------------

>

July 19, 2004

Carolyn,

Do you have the rectal diazapam at home for emergencys? That helped us a

lot while we were sorting things out.

Hallie

low ketones and seizures!

Hello,

aël is having very bad time seizures every 20 or 40 mn ,I've just

check his blood ketones and he's 1.1 mmol!!!!

How can I do to increase the level?

thanks

Carolyn, Nath's mum

July 19, 2004

It sounds like he might be in status. Do you have any ativan or valium or

anything similar? Have you talked to the neurologist? He might need

hospital intervention, though I've been vaguely following your posts and

this might be typical for him? I wouldn't worry about the ketones, I would

worry about stabilizing him first.

Barb Swoyer, Jake's mom

low ketones and seizures!

Hello,

aël is having very bad time seizures every 20 or 40 mn ,I've just

check his blood ketones and he's 1.1 mmol!!!!

How can I do to increase the level?

thanks

Carolyn, Nath's mum

----------------------------------------------------------------------------

----

July 19, 2004

aël went to hospital 1 month ago for 3 weeks and it's worse since this

hospitalization....We tried a lot of drugs but no effect and I don't want to go

back to hospital for the same!

So I keep him at home and I try to help him as I can, I did a valium intra

rectal last night but it's worse so I have to wait for the good effects from

the diet.Doctors said they can't do anything else for my son, they don't

understand so....

Carolyn, Nath's mum

low ketones and seizures!

Hello,

aël is having very bad time seizures every 20 or 40 mn ,I've just

check his blood ketones and he's 1.1 mmol!!!!

How can I do to increase the level?

thanks

Carolyn, Nath's mum

----------------------------------------------------------------------------

----

July 19, 2004

,

I revew all the food for aël but I think I've made a little

mistake...When I've calculated the calories I took his weight which is under

the normal weight and not the ideal weight...

aël is 6 years old, weight 18 kg and 1 . 21 meter...

He's on ratio 4.1

I've found:

proteins 20 g/day

fat 120 g/day

carbonhydrates 10 g / day

calories 1224/day

So one type menu is (just since yesterday!before it wasn't that at all!) :

cream at 36% 40 g

vegetables group A 35 g

ham 18 g

oil 14 g

I use olive oil

And he takes 4 meals/day

He doesn't drink a lot, only about 1/2 liter a day.

Flax oil is forbidden in France and coconut oil very hard to find, I haven't

got yet

Thank you for helping me, I'm so glad I've found your group!

Carolyn, aël's mum

Re: low ketones and seizures!

Hi Carolyn

I'm sorry you're going through such a difficult time.

What meals are you giving ael? What fats are you using? Would

you like to tell us exactly what food he has eaten, including how

many grams of each thing and we could perhaps check that the

calculations look right for you.

What drinks does he take?

A couple of oils to use to for high ketones are:

Coconut oil - this a white fat which is solid at room temperature, I

find it perfect for frying mushrooms in, as they absorb a lot of it,

and I seem to remember ael is on 5:1 or have you changed that?

Flax oil - you will find this in the health shop, in the

refrigerator. You only use a tiny bit, and the taste is quite

strong - nutty flavour. Francesca likes it.

Do you have ground almonds and/or desiccated coconut/macadamia nuts?

I can give you a cookie recipe, which Francesca has for her bedtime

snack and she always wakes with good ketones in the morning. It does

use coconut oil, but you could use butter instead until you find some

coconut oil.

I'll be around for the next hour or so, but then I'm out for a while,

but I should be able to answer this evening otherwise.

Keep calm and take care of yourself as well as ael - easier

said than done I know.

, Mum to Francesca, Keto Kid since Sept 03, drug free since May

04

>

> Hello,

>

> aël is having very bad time seizures every 20 or 40

mn ,I've just check his blood ketones and he's 1.1 mmol!!!!

> How can I do to increase the level?

> thanks

> Carolyn, Nath's mum

>

> --------------------------------------------------------------------

------------

>

July 19, 2004

Have you tried using flax oil? It does well to raise some kids' ketones. But you

have to start with small amount - no more

then 2 g per meal - and up it slowly so you don't get stomach upset. Keep

refrigerated, don't use for cooking and look for

reputable brand - like Barleans or Omega. Also make sure store where you buy it

keeps it refrigerated

caronath wrote:

> Hello,

>

> aël is having very bad time seizures every 20 or 40 mn ,I've just

check his blood ketones and he's 1.1 mmol!!!!

> How can I do to increase the level?

> thanks

> Carolyn, Nath's mum

>

--------------------------------------------------------------------------------

>

July 19, 2004

Carolyn,

I'm new to the site, but have been reading your posts for the past few week=

s. I am so

worried for you and your son. I think about him a lot! I know how hard all =

the

uncertainty is and I know it gets even harder when you're trying to sort ou=

t the diet.

My son had a very hard time keeping his ketones up in the morning - I know =

the

doctors say this is normal, but it was very frustrating for me. An early bl=

ood test

showed he had a carnitine deficiency - he didn't have this problem before t=

he diet.

From what I understand, carnitine helps the body metabolize fats [and there=

by

increase ketones]. Most people get plenty of carnitine by eating proteins, =

but our kids

get way more fat then protein and sometimes their bodies can't keep up. If =

your son

is on Depakote, the problem is usually exacerbated. I don't think it's help=

ed greatly

with seizure control [we've had about 75% reduction overall and we've been =

on the

diet about 6 weeks with plenty of ups and downs], but his ketones are now a=

lways

high in the morning and he's more vibrant. It may be worth a try... =

takes one

Carnitor tablet with his last snack before bed.

Also - trust yourself!!! No one knows your child as well as you do. Take a =

break [if at

all possible], get some rest, and then do what you think is right. We are l=

ucky enough

to have some of the best doctors working with , but often my gut [ag=

ainst

recommendation] has told me to try something and it's worked. I don't know =

if that

means lowering ael's meds, raising his meds, lowering the diet, raisi=

ng the

diet, going to the hospital or staying home. I know I've grasped at straws =

in times of

desperation - but try not to - think it through and follow your heart. I ho=

pe your son

stabilizes soon - he'll be in my thoughts.

Whitney, 's mom

>

> Hello,

>

> aël is having very bad time seizures every 20 or 40 mn ,I've jus=

t check his

blood ketones and he's 1.1 mmol!!!!

> How can I do to increase the level?

> thanks

> Carolyn, Nath's mum

>

------------------------------------------------------------------------

--------

>

July 20, 2004

Hi Carolyn

Your calculations look pretty much correct for ael. I input

the food into my planner, and it seems slightly out, ie it came out

at 3.2:1. However, this could be because the values are different in

France. The other possibility is that the carbohydrate in the cream

is different to here. Do you know the carbohydrate value for the

cream?

The other thing to consider is which vegetables you use. If you are

using group A veg, obviously some are higher in carbohydrate than

others, and it might we worth trying to use low carb veg, for example

mushrooms, fennel, spinach, broccoli, celery etc.

I can't remember whether you are using the Stanford planner? I have

taken the Standford planner and wiped all the US food and input the

UK values for all the food I use - I don't know whether it would

useful for you to have a copy of this, as it is probably closer to

French food??? As I have input ael's figures, I could e-mail

you a copy all set up if you like??? As it happens, I have also

input fibre contents of everything, as I have been working on

constipation too!

Last, but not least, could I post you some coconut oil? It's easily

available here. I would probably have to buy the organic one for you

as it comes in a plastic container rather than a glass jar. The cost

is £10.90 for the organic. (The non organic is 97 pence - crazy

huh!) If you'd like me to do this, please let me know, today

ideally, as I'm in the office tomorrow and could organise posting it

very easily. E-mail me your address privately if you'd like to

(wendymw@...).

Take care

, Mum to Francesca, Keto Kid since Sept 03

> >

> > Hello,

> >

> > aël is having very bad time seizures every 20 or

40

> mn ,I've just check his blood ketones and he's 1.1 mmol!!!!

> > How can I do to increase the level?

> > thanks

> > Carolyn, Nath's mum

> >

> > --------------------------------------------------------------

------

> ------------

> >

July 20, 2004

Hi Carolyn, my daughter Kristan is also having a bad time, she's

having seizures every 5 or 10 minutes and will go for hours at a time

this way, poor thing just wants to sleep and the seizures always hit

her when she is sleepy. The doctors don't know what else to do with

her, except to suggest try a new drug, which I am not prepared to do

right now b/c we have tried a dozen drugs that did nothing for her.

In August it will have been a year since being on the diet and we

have never achieved high ketosis. She did real well in the middle of

May to almost the end of June this year, having no seizures on some

days or 1-2 a day and now all of a sudden out of nowhere the seizures

are out of control, she had over 70 yesterday. I'm afraid I have no

advice, just wanted to let you know that I know how you must be

feeling.

Satnam, mom to Kristan, 19 months

Keto kid since August 2003

>

> Hello,

>

> aël is having very bad time seizures every 20 or 40

mn ,I've just check his blood ketones and he's 1.1 mmol!!!!

> How can I do to increase the level?

> thanks

> Carolyn, Nath's mum

>

> --------------------------------------------------------------------

------------

>

July 21, 2004

Thank you Satnam,

I'm going to the hospital , aël is very bad, I'll try to tell doctors

what I would like to change but they don't listen to me!

I don't want to put a lot of drugs at the same time , I would like to try one

and if it doesn't work then stop it and try a new one but they don't do that

they put one and one and one and Ntah is overdrugs!!!

Good luck to you too

Carolyn