Re: consult for keto tomorrow?Diane

[Guest guest]

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.

> >

> >

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> >