Re: - LGS/Doose -

[Guest guest]

,

Thank you so much for mentioning that - all these years and it has

only ever been LGS that has been compared to but I have NEVER

had an official diagnosis of ANY syndrome and the Doose syndrome

certainly has never been mentioned. In fact, the only research I

have done has been all around LGS - you just seem to concentrate on

the situation surrounding your own child. Although I had heard of the

syndrome in my 'reading travels' years ago, I never did much follow

up on it because it was always LGS.

I refused to let have Phenobarb, but he did try phenytoin,

vigabatrin, tegratol - all of which he had to come off fairly quickly

as they sent him and his seizures through the roof. Before Matt was

weaned off meds he was on gabapentin and topomax - they certainly

didn't control him but they were the ones that didn't make things any

worse than they were!

I think I have some more research to do!

Thanks I will look into it.

Best Wishes,

Emma

> was originally given LGS as a diagnosis too, he didnt have

the

> 'typical' EEG pattern either - 5 mths later he was officially 're'

> diganosed with MAE (Myolonic Astatic Epilepsy of Early Childhood,

or 'Doose

> syndrome')

> Main differences are a) the EEG pattern, and seizure types -

tonics,

> partials or aytpical absences are not common MAE seizures - as

opposed to

> LGS where they are often seen.

> presented initially with TCs, then myos and drops came to

join the

> party, as well as absences.

> Responses to medication can be quite different between the 2

sydromes, MAE

> kiddies can react quite severely to some of the meds that can be

beneficial

> (or neutral) to LGS children, eg - phenobarb, phenytoin, viagbatrin

and

> tegretol. had a very obvious paradoxical seizure reaction to

3 out of

> those 4, not vigabatrin tho', as we never went down that path.

> Just thought I'd mention it, in case seemd to fit that

one closer

> instead...

>

>

>

>

>

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

> From: " ketomum68 " <elewilliams@n...>

>

>

> > Couldn't agree more! presents as Len Gast but doesn't

have

> > the brain wave pattern for the offical diagnosis.