Carolyn - ael and the keto diet book

[Guest guest]

Hi Carolyn,

K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs diazepam,

that is a LOT of benzodiazepine for a nearly 6 yr old to be on per

day.... was 6 yrs old on that diaz dose at one point too (his was

decreased from a massively ridiculous dose of 60 down to 30 mgs), and he

continued to have toxicity induced seizures till we got him down to below 20

mgs, and that was without phenobarb (can be equally sedating) in the

equation.

A 5:1 ratio is way too high unless there is a specific reason they have

used this - I see you have been advised on here to get Dr Freeman's book,

and I second that. Your Drs need to be made aware that they are potentially

aggravating his condition (ie -seizures!!) with 2 strong high dose meds in

combination with a very high ratio.

The book's actual title is 'The ketogenic Diet - A Treatment for

Epilepsy'. I have the 3rd edition here, published in 2000by 'Demos'.

Authors are Freeman (Hopkins hosp in USA), Freeman and

Millicent .

Basically to see if they have his diet in a ballpark range though, total

calories for a 6 yr old are usually calculated at 65-68 cals per kg of

bodyweight, including protein at 1.1 gm per kg. If possible, with meals

spread fairly evenly over the day, and most find that a snack right before

bedtime helps keep ketones up overnight.

If he is under or overweight for his height though, the total calorie

figure will probably be amended to aim towards his ideal weight, and the

ratio should then be adjusted accordingly. (for example - if aiming for a

lower bodyweight, less calories will be allocated, meaning body fat will

probably be burnt as the weight is lost, so a lower ratio would be required

to prevent excess ketosis, with the opposite applying if weight gain is

desired)

Most kiddies are started out on between a 3.1 or 4:1 ratio, moving up or

down depending on how easily they produce ketones and how their seizure

control goes.

Urine ketones on the diet usually range from 4-16, blood ketones (if you

can puchase a blood ketone monitor) are more accurate however. With that

high ratio I would suspect he has fairly large ketones, and if so, his blood

gases (blood ph bicarb, base excess etc) should also be checked to make sure

he has not gone into metabolic acidosis. Glucose levels should probaby be

done regualarly too, as he is not getting very much in the way of

carbohydrates.

Can you persuade anyone there to phone or email Hopkins hospital and seek

advice, which I believe would actually result in confirmation that he is

probably toxic on a combination of a high ketogenic ratio and medications.

Weakness and paleness (usually with dark circles round the eyes), increased

seizures, unsteadiness, legarthy, slurred or slowed speech, with or without

vomiting, were 's toxicity signs.

----- Original Message -----

Thank you for this mail, that confirms what I thought!

I 've decided to decrease phenobarbital because Nath was very bad with a

lot of seizures like an overdose!!!!This night he's had 3 seizures...I'll

see...

Here in France Drs don't believe in keto diet, it's really a pity!

aël is nearly 6 .

At hospital they have just check if he's on ketosis and that's all, I

haven't got any numbers...I don't know neither why he's put on 5:1

ratio....I'll try to recalculate every thing to check by myself the doses

he must have...I'm looking for every little advice and information to

calculate the diet.

For the clonazepam 30 drops equate to 3 mg .

In the last 3 weeks spent at hospital they increased clonazepam and they

put phenobarbital ! But still seizures every night...

Nath is very weak, white I'm worried.

Thank you all for your responses

Carolyn

[Guest guest]

Suzan,

I read and read again your mail and a lot of things make me furious against

the way they act here about this diet!

I don't even know at which rate is aël on cetosis, no urines control, no

blood control since we left hospital!

what's Blood ketone monitor? Where can I find one?

Is it better than urines ketones control?

None control is programmed!

So I'll go to the doctor and ask for a prescription, a blod one! Could you

tell me what exactly I have to ask for this prescription?

Thank you, I'm really sad to see my angel so bad...Doctors sait there nothing

to do else because they don't know the disease but I am his mum and I can't

accept that!

Help me please

Carolyn, aël's mum who has a lot of seizures during the night ant the

morning!

Carolyn - ael and the keto diet book

Hi Carolyn,

K, as a benchmark to compare to, 3 mgs clonaz = approx 30 mgs diazepam,

that is a LOT of benzodiazepine for a nearly 6 yr old to be on per

day.... was 6 yrs old on that diaz dose at one point too (his was

decreased from a massively ridiculous dose of 60 down to 30 mgs), and he

continued to have toxicity induced seizures till we got him down to below 20

mgs, and that was without phenobarb (can be equally sedating) in the

equation.

A 5:1 ratio is way too high unless there is a specific reason they have

used this - I see you have been advised on here to get Dr Freeman's book,

and I second that. Your Drs need to be made aware that they are potentially

aggravating his condition (ie -seizures!!) with 2 strong high dose meds in

combination with a very high ratio.

The book's actual title is 'The ketogenic Diet - A Treatment for

Epilepsy'. I have the 3rd edition here, published in 2000by 'Demos'.

Authors are Freeman (Hopkins hosp in USA), Freeman and

Millicent .

Basically to see if they have his diet in a ballpark range though, total

calories for a 6 yr old are usually calculated at 65-68 cals per kg of

bodyweight, including protein at 1.1 gm per kg. If possible, with meals

spread fairly evenly over the day, and most find that a snack right before

bedtime helps keep ketones up overnight.

If he is under or overweight for his height though, the total calorie

figure will probably be amended to aim towards his ideal weight, and the

ratio should then be adjusted accordingly. (for example - if aiming for a

lower bodyweight, less calories will be allocated, meaning body fat will

probably be burnt as the weight is lost, so a lower ratio would be required

to prevent excess ketosis, with the opposite applying if weight gain is

desired)

Most kiddies are started out on between a 3.1 or 4:1 ratio, moving up or

down depending on how easily they produce ketones and how their seizure

control goes.

Urine ketones on the diet usually range from 4-16, blood ketones (if you

can puchase a blood ketone monitor) are more accurate however. With that

high ratio I would suspect he has fairly large ketones, and if so, his blood

gases (blood ph bicarb, base excess etc) should also be checked to make sure

he has not gone into metabolic acidosis. Glucose levels should probaby be

done regualarly too, as he is not getting very much in the way of

carbohydrates.

Can you persuade anyone there to phone or email Hopkins hospital and seek

advice, which I believe would actually result in confirmation that he is

probably toxic on a combination of a high ketogenic ratio and medications.

Weakness and paleness (usually with dark circles round the eyes), increased

seizures, unsteadiness, legarthy, slurred or slowed speech, with or without

vomiting, were 's toxicity signs.

----- Original Message -----

Thank you for this mail, that confirms what I thought!

I 've decided to decrease phenobarbital because Nath was very bad with a

lot of seizures like an overdose!!!!This night he's had 3 seizures...I'll

see...

Here in France Drs don't believe in keto diet, it's really a pity!

aël is nearly 6 .

At hospital they have just check if he's on ketosis and that's all, I

haven't got any numbers...I don't know neither why he's put on 5:1

ratio....I'll try to recalculate every thing to check by myself the doses

he must have...I'm looking for every little advice and information to

calculate the diet.

For the clonazepam 30 drops equate to 3 mg .

In the last 3 weeks spent at hospital they increased clonazepam and they

put phenobarbital ! But still seizures every night...

Nath is very weak, white I'm worried.

Thank you all for your responses

Carolyn

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

> Suzan,

>

> I read and read again your mail and a lot of things make me

furious against the way they act here about this diet!

>

> I don't even know at which rate is aël on cetosis, no

urines control, no blood control since we left hospital!

> what's Blood ketone monitor? Where can I find one?

> Is it better than urines ketones control?

> None control is programmed!

> So I'll go to the doctor and ask for a prescription, a blod one!

Could you tell me what exactly I have to ask for this prescription?

>

> Thank you, I'm really sad to see my angel so bad...Doctors sait

there nothing to do else because they don't know the disease but I

am his mum and I can't accept that!

> Help me please

>

> Carolyn, aël's mum who has a lot of seizures during the

night ant the morning!

>

> Carolyn - ael and the keto diet book

>

>

> Hi Carolyn,

> K, as a benchmark to compare to, 3 mgs clonaz = approx 30

mgs diazepam,

> that is a LOT of benzodiazepine for a nearly 6 yr old to be on

per

> day.... was 6 yrs old on that diaz dose at one point too

(his was

> decreased from a massively ridiculous dose of 60 down to 30

mgs), and he

> continued to have toxicity induced seizures till we got him

down to below 20

> mgs, and that was without phenobarb (can be equally sedating)

in the

> equation.

> A 5:1 ratio is way too high unless there is a specific

reason they have

> used this - I see you have been advised on here to get Dr

Freeman's book,

> and I second that. Your Drs need to be made aware that they

are potentially

> aggravating his condition (ie -seizures!!) with 2 strong high

dose meds in

> combination with a very high ratio.

> The book's actual title is 'The ketogenic Diet - A Treatment

for

> Epilepsy'. I have the 3rd edition here, published in

2000by 'Demos'.

> Authors are Freeman (Hopkins hosp in USA),

Freeman and

> Millicent .

>

> Basically to see if they have his diet in a ballpark range

though, total

> calories for a 6 yr old are usually calculated at 65-68 cals

per kg of

> bodyweight, including protein at 1.1 gm per kg. If possible,

with meals

> spread fairly evenly over the day, and most find that a snack

right before

> bedtime helps keep ketones up overnight.

> If he is under or overweight for his height though, the

total calorie

> figure will probably be amended to aim towards his ideal

weight, and the

> ratio should then be adjusted accordingly. (for example - if

aiming for a

> lower bodyweight, less calories will be allocated, meaning

body fat will

> probably be burnt as the weight is lost, so a lower ratio

would be required

> to prevent excess ketosis, with the opposite applying if

weight gain is

> desired)

> Most kiddies are started out on between a 3.1 or 4:1 ratio,

moving up or

> down depending on how easily they produce ketones and how

their seizure

> control goes.

> Urine ketones on the diet usually range from 4-16, blood

ketones (if you

> can puchase a blood ketone monitor) are more accurate however.

With that

> high ratio I would suspect he has fairly large ketones, and if

so, his blood

> gases (blood ph bicarb, base excess etc) should also be

checked to make sure

> he has not gone into metabolic acidosis. Glucose levels should

probaby be

> done regualarly too, as he is not getting very much in the way

of

> carbohydrates.

> Can you persuade anyone there to phone or email Hopkins

hospital and seek

> advice, which I believe would actually result in confirmation

that he is

> probably toxic on a combination of a high ketogenic ratio and

medications.

> Weakness and paleness (usually with dark circles round the

eyes), increased

> seizures, unsteadiness, legarthy, slurred or slowed speech,

with or without

> vomiting, were 's toxicity signs.

>

>

>

>

> ----- Original Message -----

> From: " caronath "

>

> Thank you for this mail, that confirms what I thought!

> I 've decided to decrease phenobarbital because Nath was

very bad with a

> lot of seizures like an overdose!!!!This night he's had 3

seizures...I'll

> see...

>

> Here in France Drs don't believe in keto diet, it's really

a pity!

> aël is nearly 6 .

> At hospital they have just check if he's on ketosis and

that's all, I

> haven't got any numbers...I don't know neither why he's put on

5:1

> ratio....I'll try to recalculate every thing to check by

myself the doses

> he must have...I'm looking for every little advice and

information to

> calculate the diet.

>

> For the clonazepam 30 drops equate to 3 mg .

> In the last 3 weeks spent at hospital they increased

clonazepam and they

> put phenobarbital ! But still seizures every night...

> Nath is very weak, white I'm worried.

> Thank you all for your responses

>

> Carolyn

> HI I AM VICKY KURTS MOM I GOT ABLOOD KETONE MONITER YESTERDAY I

GOT IT OFF MY DIETICIAN, SHE GAVE IT TO ME SO IF KURT FITS I CAN

TELL HIS KETONE LEVELLS STRAIGHT AWAY.

> I AM IN WEST YORKSHIRE ENGLAND

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT

just a last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-

unsubscribe

>

>

>

>

>

[Guest guest]

I really hate to hear the frustration in this email and I hope that

you get some help soon.

We are trying to get into deeper ketosis (we are at 3.5:1 now

and he has periods in the evening of deep ketosis not during the day)

and we bought the blood ketone monitor. You can buy them from

Canadian pharmacy without a prescription. We did and the sticks are

really expensive unless you go Canadian.

We bought the Precision Xtra Monitor with the beta ketone sticks not

the blood glucose sticks. You'll get a lancet and plunger to stick

his finger with the kit, but you'll want to buy more lancets. Go to

Zooscape.com or do a search on the internet for the monitor.

Good luck. I don't know how else to answer your questions. If you

will email me at home terrybuckner947@..., I will try. We had a

really bad first week and a half and I know how confusing and

frustrating it is. Sounds like you need a better keto team and a

better dietician.

Good luck and God bless.

Tina (mom to - 20 months old with myoclonics)

> > Suzan,

> >

> > I read and read again your mail and a lot of things make me

> furious against the way they act here about this diet!

> >

> > I don't even know at which rate is aël on cetosis, no

> urines control, no blood control since we left hospital!

> > what's Blood ketone monitor? Where can I find one?

> > Is it better than urines ketones control?

> > None control is programmed!

> > So I'll go to the doctor and ask for a prescription, a blod

one!

> Could you tell me what exactly I have to ask for this prescription?

> >

> > Thank you, I'm really sad to see my angel so bad...Doctors sait

> there nothing to do else because they don't know the disease but

I

> am his mum and I can't accept that!

> > Help me please

> >

> > Carolyn, aël's mum who has a lot of seizures during the

> night ant the morning!

> >

> > Carolyn - ael and the keto diet

book

> >

> >

> > Hi Carolyn,

> > K, as a benchmark to compare to, 3 mgs clonaz = approx 30

> mgs diazepam,

> > that is a LOT of benzodiazepine for a nearly 6 yr old to be

on

> per

> > day.... was 6 yrs old on that diaz dose at one point

too

> (his was

> > decreased from a massively ridiculous dose of 60 down to 30

> mgs), and he

> > continued to have toxicity induced seizures till we got him

> down to below 20

> > mgs, and that was without phenobarb (can be equally sedating)

> in the

> > equation.

> > A 5:1 ratio is way too high unless there is a specific

> reason they have

> > used this - I see you have been advised on here to get Dr

> Freeman's book,

> > and I second that. Your Drs need to be made aware that they

> are potentially

> > aggravating his condition (ie -seizures!!) with 2 strong high

> dose meds in

> > combination with a very high ratio.

> > The book's actual title is 'The ketogenic Diet - A

Treatment

> for

> > Epilepsy'. I have the 3rd edition here, published in

> 2000by 'Demos'.

> > Authors are Freeman (Hopkins hosp in USA),

> Freeman and

> > Millicent .

> >

> > Basically to see if they have his diet in a ballpark range

> though, total

> > calories for a 6 yr old are usually calculated at 65-68 cals

> per kg of

> > bodyweight, including protein at 1.1 gm per kg. If possible,

> with meals

> > spread fairly evenly over the day, and most find that a snack

> right before

> > bedtime helps keep ketones up overnight.

> > If he is under or overweight for his height though, the

> total calorie

> > figure will probably be amended to aim towards his ideal

> weight, and the

> > ratio should then be adjusted accordingly. (for example - if

> aiming for a

> > lower bodyweight, less calories will be allocated, meaning

> body fat will

> > probably be burnt as the weight is lost, so a lower ratio

> would be required

> > to prevent excess ketosis, with the opposite applying if

> weight gain is

> > desired)

> > Most kiddies are started out on between a 3.1 or 4:1 ratio,

> moving up or

> > down depending on how easily they produce ketones and how

> their seizure

> > control goes.

> > Urine ketones on the diet usually range from 4-16, blood

> ketones (if you

> > can puchase a blood ketone monitor) are more accurate

however.

> With that

> > high ratio I would suspect he has fairly large ketones, and

if

> so, his blood

> > gases (blood ph bicarb, base excess etc) should also be

> checked to make sure

> > he has not gone into metabolic acidosis. Glucose levels

should

> probaby be

> > done regualarly too, as he is not getting very much in the

way

> of

> > carbohydrates.

> > Can you persuade anyone there to phone or email Hopkins

> hospital and seek

> > advice, which I believe would actually result in confirmation

> that he is

> > probably toxic on a combination of a high ketogenic ratio and

> medications.

> > Weakness and paleness (usually with dark circles round the

> eyes), increased

> > seizures, unsteadiness, legarthy, slurred or slowed speech,

> with or without

> > vomiting, were 's toxicity signs.

> >

> >

> >

> >

> > ----- Original Message -----

> > From: " caronath "

> >

> > Thank you for this mail, that confirms what I thought!

> > I 've decided to decrease phenobarbital because Nath was

> very bad with a

> > lot of seizures like an overdose!!!!This night he's had 3

> seizures...I'll

> > see...

> >

> > Here in France Drs don't believe in keto diet, it's

really

> a pity!

> > aël is nearly 6 .

> > At hospital they have just check if he's on ketosis and

> that's all, I

> > haven't got any numbers...I don't know neither why he's put

on

> 5:1

> > ratio....I'll try to recalculate every thing to check by

> myself the doses

> > he must have...I'm looking for every little advice and

> information to

> > calculate the diet.

> >

> > For the clonazepam 30 drops equate to 3 mg .

> > In the last 3 weeks spent at hospital they increased

> clonazepam and they

> > put phenobarbital ! But still seizures every night...

> > Nath is very weak, white I'm worried.

> > Thank you all for your responses

> >

> > Carolyn

> > HI I AM VICKY KURTS MOM I GOT ABLOOD KETONE MONITER YESTERDAY I

> GOT IT OFF MY DIETICIAN, SHE GAVE IT TO ME SO IF KURT FITS I CAN

> TELL HIS KETONE LEVELLS STRAIGHT AWAY.

> > I AM IN WEST YORKSHIRE ENGLAND

> >

> >

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT

> just a last resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

> professional keto team!

> > Subscribe: ketogenic-

subscribe

> > Unsubscribe: ketogenic-

> unsubscribe

> >

> >

> >

> >

> >