Re: Re: Isaac doing fantastic!/Katleen

[Guest guest]

Hi Kathleen,

I was so happy to read Issac's story. It is somewhat similar to my

son Rohan's. He's much older (15 1/2 yrs) and we did the KGD

for over 3 years with limited success. When Rohan was about 10

days old a nurse dropped him accidentally. He only started sz at

about 4 and 1/4 yrs of age. MRI shows brain damage in the same area

as the bump he had with the accident. Had mild success with some

AEDs but not for long. Then we tried the KGD (but he wasn't sz free)

and managed to get off AEDs for 1 and a 1/2 yrs.

Now he's on Keppra and waiting for the VNS.

I'm so glad to hear of your story because I thought maybe the diet

doesn't work with a head injury - and I'm v.glad that it isn't so.

Who knows we might give the KGD (or Atkins) a try again sometime

in the future if the VNS needs a boost.

Thanks for sharing your story and wishing Isaac continued success.

Saro.....mum to Rohan (In UK)

>

> > > Hi all - haven't been on for awhile b/c of camping holiday (keto

> > > equip. and all). Last I wrote after an initially perfect

> response

> > > Isaac had a set-back. At that time we increased his valproate

> (as

> > > per someone's advice here (thank-you) by only 30mg increments --

> > > took only two). It turns out he did break some bones in his

> foot

> > > and it looks like it was pain causing the set-back. He is

> > > absolutely perfect again so we are going to try the wean again.

> > > Gulp! This time I'm going to go down by 30mg decrements as

> well.

> > > He's so good I do wonder a bit why I'm trying to fix something

> > that

> > > ain't broke. Mind you if we really could get him AE free it

> would

> > > really be something. Just knowing that we can quickly bump him

> > back

> > > up by such a small amount is helpful too.

> > >

> > > He's gone back to school (early intervention) and it seems

> > everyone

> > > is commenting on how nice his eyes are and how they never

> noticed

> > it

> > > before. I just smile and agree but what I know inside is that

> > they

> > > are seeing the light back on in his eyes and that is why they

> are

> > so

> > > beutiful! We've parked his wheelchair in the closet, tossed his

> > > helmut in the basement and are enjoying life to the fullest.

> > >

> > > Thanks for being there

> > >

> > > Kathleen

> > >

> > >

> > >

>

>