To and Adrielle - welcome!

[Guest guest]

Hi and Adrielle

Glad to have you join us. This group and others (Friends in the UK being

my

other lifeline!) have been wonderful and made so much difference to the way we

have

coped with the diet and life in general.

I have been thinking recently about diagnosis and talking to a few people as

well. I

was interested to hear you say that the epilepsy appeared at age 2 but the LGS

diagnosis didn't happen for another 3 years. Why the delay in diagnosis? Have

you

ever wondered whether the medications have actually changed the epilepsy enough

to

prompt a particular diagnosis? In our case we were a mystery for a year or so,

then we

had a diagnosis of MAE/Doose, then at the last EEG (Aug 04) that diagnosis was

pronounced to be incorrect. We have seen gradual changes to Ben's epilepsy over

the

last five years. Now we are drug-free (as of end Sept 04) there is one seizure

type

which has gone away (a kind of weird atypical absence which we are convinced was

brought on by drugs) and I reckon the diagnosis will have changed again!

Anyone else any thoughts on this?

All the best!

Rose Toms, mum of Ben (9) epilepsy since Mar 99, keto-kid since Feb 04,

drug-free

since end Sept 04