consult for keto tomorrow

[Guest guest]

Diane,

My grandson is seizure free after starting the ketogenic diet the first part of

July. Before he started it he was having seizures every 20 seconds. It was

awful. He was diagnosed with Landau Kleffner Syndrom which is rare and affects

speech.; He lost all of his speech and couldn't talk at all. He was very

unsteady on his feet.

He hasn't had a seizure since starting it and has been taken off 3 of the meds

he was on. diazapam, dilantin, and Kepra. He is still on 2 but I think they

will wean him off of those shortly. It was a Godsend to us and his next

alternative would have been brain surgery or steroids. We are very thankful. He

is such a cute bright little boy. He can talk again and is not unsteady anymore.

I hope it works as well for you. If I can be of any help just email me.

Hallie

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.