Re: Re: consult for keto tomorrow?Diane

[Guest guest]

Hi Diane - yes, the idea of all the fat being poured down them does sound

unhealthy - but the fact of the matter is...

Fat is the 2nd natural fuel alternative for our bodies when glucose is not

available. The diet is precisely calculated so that the caloric fat (ie - fuel

used instead of glucose/carbs for keto kids ) - from each meal matches the

energy/growth needs, and is therefore actually completely metabolised before the

next meal is due - which is how the ketone bodies are produced - they are the

'residue' left after the fat is burnt through for energy.

There is very little processed food consumed, and no 'sweets' etc, which as

the others have said is probably a lot healthier than what our other kiddies are

eating...

The protein allowance is set to meet the World Health Organisation's

recommended daily allowance for the child's age and weight, and again, looking

at my other kiddies meals sometimes, I have to wonder whether they even reach

this RDA allowance every day like I know does...

Is it completely nutritonally complete on it's own? I don't believe so

personally, no.....but that is why all the children are placed on a good quality

multi vitamin to make sure mineral and vitmain levels are kept within a healthy

range.

The problems that can occur on the diet relate more to miscalculations of

calorie needs etc, and this has to watched very closely - the children are

supposed to be weighed weekly and their height plotted on growth charts every 3

mths to make sure nothing is going awry.

Hiccups in diet calcs of course DO occur, and many of us learn the hard way

how to prevent them happening again, but all in all, given a choice of seizures

and high dose meds as opposed to the keto diet (and in our case low dose meds

still..) there simply is no question for us as to which has been the most

beneficial for .

Do I have any experience with the diet? Er yep - as a matter of fact, tomorrow

is the 3 yr anniversary of starting on it back in Sep 2001, so like many

others here, the diet is sort of second nature here for us now. Was I

apprehensive at first? Oh yes....But, after many bumps in the road (mainly

med/toxicity related, with a period of miscalculation of calories as well) we

can now say it is working 100%, with back on track - his last seizure

seen was on Dec 24th 2003.

It used to be said that the diet worked best for generalised seizures such as

myoclonics and drop attacks, but more recent studies now say that it works well

for all seizure types, including focal. Starting out on it with no meds on board

to interfere with diet finetuning is preferable if at all possible, but if not,

then any exisiting meds can hopefully be weaned once ketois is established and

control has been attained. Sometimes meds have to be weaned to actually gain

control, as a lot of children can go toxic on the ketone/diet combination.

Holler if you need any more info, and in the meantime I really do urge you to

get the diet book written by Dr Freeman, it will make things a lot clearer to

you as to how the diet actually works for seizure control,

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

From: gretchen_kissock

I think when you refered to the

keto diet as unhealthy you were thinking of all the fat.

> Hi ,

> Thanks for getting back to me. We had our consult at children's

hospital

> in Boston with Dr. Bergin and she felt n should try the

diet. Do you

> have any experience with the diet? I am so on the fence whether

we should

> try it or not but on the other hand I am so upset every he has a

seizure. I

> believe his seizures are focal. He had a grade 4 IVH 24 hours

after birth.

> We have been on topamax, trileptal, keppra and just started

zonagram. What

> if any is your experience with the diet? I am so worried to try

it because

> it is sooooo unhealthy!

>

> Diane in Boston

[Guest guest]

Gretchen no need to be sorry and you are not butting in. I am very new at

all this and have only been introduced to the keto world since Monday. I

don't know a whole lot about it and that is why I am on this site. How old

is your child and how long have you been doing the diet and what have your

results been? I would like as much feed back as I can get.

Thanks Diane mom to n

Re: consult for keto tomorrow

> >

> >

> > > Hi, not sure if anyone has already written this, but a v good

> book for

> > you to read would be 'The Ketogenic Diet, A treatment for

> Epilepsy' By

> > Freeman, Freeman and Millicent (Hopkins hospital).

> > > Very informative and encouraging, and will widen your

> knowledge on how

> > and why the diet works in epilepsy. Well, kind of - cos there is

> still no

> > definitive answer to that million dollar question, but I highly

> recommend

> > it.

> > > Starting the diet with a drug cocktail can lead to toxicity

> problems, so

> > if you are contemplating it, I would look at weaning one or more

> meds down,

> > (or has he been on those meds listed one at a time only?) as so

> many of us

> > attest to - if they were working enough to keep them in the mix,

> you

> > probably wouldn't be looking at keto as a treatment anyway.....

> > > What type of seizures does your son have - if a generalised

> epilepsy

> > seizure dIsorder, trileptal (and tegretol) can worsen some

> kiddies...or are

> > his focal seizures?

> > > I have a premi child too - but she is now 10, and not the one

> with the

> > epilepsy - my 7 yr old (full term, healthy as a horse till 3 yrs

> old) has

> > that dubious honour

> > > There are many websites relating to the keto diet that you

> could read up

> > on, if you have an specific questions, fire away, or if you need

> some

> > specific links let us know too. I think there might also be some

> links in

> > the files section at the home page here.

> > >

> > > Hill in NZ

> > >

> > >

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

> > > From: s38992002

> > >

> > >

> > > I have a consult tomorrow with my 2.5 year old son who has

> been

> > > haveing seizures every 5 to 7 days for the last 5 months

> despite

> > > being on trileptal, keppra and know zonagram. Does anyone

> have any

> > > suggestions for me in terms of questions I should be

> asking? I

> > > don't know much about the diet other than it is a high fat

> and low

> > > carb and protein. My son was a 26 week premi who suffered a

> grade 4

> > > IVH at birth which is the cause of his seizures. I would

> love any

> > > suggestions as I am new to this group.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

The other thing to remember is that the diet CAN be done a lot healthier

than many centres do. Limiting the amount of saturated fat (cream,

butter, mayo, processed meats) per meal and using a variety of healthy

oils (flax, olive, sunflower, safflower) can make a big difference. And

I firmly believe it is better to use butter rather than margarine for

our ketokids, they are most likely going to eat more of it than we do

and if you ever look at the processing of margarine, between the

transfats (which I know some brands are now getting away from) and the

aluminum left from processing, I stayed away from it for . And

then of course, as everyone is saying......they eat veggies and fruit

and NONE of the junk food and processed crap that most of us, including

our kids on typical diets, are eating

, 's mom

gretchen_kissock wrote:

> Hi Diane,

> Sorry, but I too have to butt in. I think when you refered to the

> keto diet as unhealthy you were thinking of all the fat. I'm very

> health conscience myself, and once in a very rare while I lament all

> the fat I am feeding my son. But really, what are our options?

> Those meds do not come free of charge on our kids' little bodies.

> Even if Ethan someday ends up back on meds, I am so glad to give his

> liver a break from them right now. Considering the amount of

> medicine your child is on, her liver might be crying for a rest,

> too. I liked Jen's comments. In many ways my son is eating very

> healthy: no fast foods, few processed foods (just can't get away

> from the sausage links and MSG-laced bacon which he loves and,

> considering his food sacrifices, I am more than happy to ablige.)

> Keto is the best thing we have done for my son. It has been hard,

> a real struggle to initiate and get used to. It has affected us all

> strongly and tested my marriage. But, I am so glad we have taken the

> pains to do this diet. It might even lead to a seizure free future,

> and no price is too great for that.

> Gretchen

>

>

> > Hi ,

> > Thanks for getting back to me. We had our consult at children's

> hospital

> > in Boston with Dr. Bergin and she felt n should try the

> diet. Do you

> > have any experience with the diet? I am so on the fence whether

> we should

> > try it or not but on the other hand I am so upset every he has a

> seizure. I

> > believe his seizures are focal. He had a grade 4 IVH 24 hours

> after birth.

> > We have been on topamax, trileptal, keppra and just started

> zonagram. What

> > if any is your experience with the diet? I am so worried to try

> it because

> > it is sooooo unhealthy!

> >

> > Diane in Boston

> > Re: consult for keto tomorrow

> >

> >

> > > Hi, not sure if anyone has already written this, but a v good

> book for

> > you to read would be 'The Ketogenic Diet, A treatment for

> Epilepsy' By

> > Freeman, Freeman and Millicent (Hopkins hospital).

> > > Very informative and encouraging, and will widen your

> knowledge on how

> > and why the diet works in epilepsy. Well, kind of - cos there is

> still no

> > definitive answer to that million dollar question, but I highly

> recommend

> > it.

> > > Starting the diet with a drug cocktail can lead to toxicity

> problems, so

> > if you are contemplating it, I would look at weaning one or more

> meds down,

> > (or has he been on those meds listed one at a time only?) as so

> many of us

> > attest to - if they were working enough to keep them in the mix,

> you

> > probably wouldn't be looking at keto as a treatment anyway.....

> > > What type of seizures does your son have - if a generalised

> epilepsy

> > seizure dIsorder, trileptal (and tegretol) can worsen some

> kiddies...or are

> > his focal seizures?

> > > I have a premi child too - but she is now 10, and not the one

> with the

> > epilepsy - my 7 yr old (full term, healthy as a horse till 3 yrs

> old) has

> > that dubious honour

> > > There are many websites relating to the keto diet that you

> could read up

> > on, if you have an specific questions, fire away, or if you need

> some

> > specific links let us know too. I think there might also be some

> links in

> > the files section at the home page here.

> > >

> > > Hill in NZ

> > >

> > >

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

> > > From: s38992002

> > >

> > >

> > > I have a consult tomorrow with my 2.5 year old son who has

> been

> > > haveing seizures every 5 to 7 days for the last 5 months

> despite

> > > being on trileptal, keppra and know zonagram. Does anyone

> have any

> > > suggestions for me in terms of questions I should be

> asking? I

> > > don't know much about the diet other than it is a high fat

> and low

> > > carb and protein. My son was a 26 week premi who suffered a

> grade 4

> > > IVH at birth which is the cause of his seizures. I would

> love any

> > > suggestions as I am new to this group.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

,

I totally agree with you!

Since 1 week or 2 I try to give aël less cream because he can bear it

anymore!!So I give him more olive oil and I guess it's better for his liver and

his stomach.

I try to give him organic food too as possible I can...

We don't need artificial supplementation which may causes a lot of others

problems and we don't need that !!!

Carolyn, aël's mum who is better today!!!!touch wood!!!

Re: consult for keto tomorrow

> >

> >

> > > Hi, not sure if anyone has already written this, but a v good

> book for

> > you to read would be 'The Ketogenic Diet, A treatment for

> Epilepsy' By

> > Freeman, Freeman and Millicent (Hopkins hospital).

> > > Very informative and encouraging, and will widen your

> knowledge on how

> > and why the diet works in epilepsy. Well, kind of - cos there is

> still no

> > definitive answer to that million dollar question, but I highly

> recommend

> > it.

> > > Starting the diet with a drug cocktail can lead to toxicity

> problems, so

> > if you are contemplating it, I would look at weaning one or more

> meds down,

> > (or has he been on those meds listed one at a time only?) as so

> many of us

> > attest to - if they were working enough to keep them in the mix,

> you

> > probably wouldn't be looking at keto as a treatment anyway.....

> > > What type of seizures does your son have - if a generalised

> epilepsy

> > seizure dIsorder, trileptal (and tegretol) can worsen some

> kiddies...or are

> > his focal seizures?

> > > I have a premi child too - but she is now 10, and not the one

> with the

> > epilepsy - my 7 yr old (full term, healthy as a horse till 3 yrs

> old) has

> > that dubious honour

> > > There are many websites relating to the keto diet that you

> could read up

> > on, if you have an specific questions, fire away, or if you need

> some

> > specific links let us know too. I think there might also be some

> links in

> > the files section at the home page here.

> > >

> > > Hill in NZ

> > >

> > >

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

> > > From: s38992002

> > >

> > >

> > > I have a consult tomorrow with my 2.5 year old son who has

> been

> > > haveing seizures every 5 to 7 days for the last 5 months

> despite

> > > being on trileptal, keppra and know zonagram. Does anyone

> have any

> > > suggestions for me in terms of questions I should be

> asking? I

> > > don't know much about the diet other than it is a high fat

> and low

> > > carb and protein. My son was a 26 week premi who suffered a

> grade 4

> > > IVH at birth which is the cause of his seizures. I would

> love any

> > > suggestions as I am new to this group.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

caronath wrote:

> Carolyn, aël's mum who is better today!!!!touch wood!!!

Sooooo very glad he is doing a bit better. Will keep the fingers crossed

and the prayers coming. Sounds like the lower ratio was the right move

MIchelle