Re: Re: Seizures ok - Gail

[Guest guest]

Hi Gail,

Yes the Dulac paper you have referred to below is a quite good one for

symptoms etc, and is the one where it is stated which meds can aggravate the MAE

seizures - so a v handy resource.

I think you will have now found your way round the files section at the Doose

webring, (let me know if not) where you will find some more up to date papers,

especially treatment wise. Studies published since this one below have

recommended the keto diet as the first line treatment, followed by ACTH

(steroids) and then the traditional AEDs.

And yes, the syndrome can carry a fairly bleak prognosis, but also is now

recorded as having a high rate of remission of the myoclonic astatic seizures,

the most recent paper suggesting an 89% remission rate wihtin 1-3 yrs of seizure

onset - the odds of which are v encouraging.

's rather long 'story' is in the files section at the Doose webring as

well - again, let me know if you have any trouble accessing anything and I'll

try and sort it out,

----- Original Message -----

From: Gail

.............

> PS - Are the myo/atonic seizures the myoclonic astatic seizures

of MAE syndrome, ('s diagnosis) - just wondering if that

could be 's diagnosis rather than LGS, the 2 are quite

commonly misdiagnosed. Tcs, myos, drops and absences are the main

MAE seizure types.

>

Thank you SO much for this " P.S. " !

I'd never come across MAE before, so wandered off round the web to

find out more. I found a very interesting article at:

http://www.epilepsy.org/ctf/myoclonic_astatic_child.html

This SO fits in with 's history - we were given the diagnosis

of LGS without the EEG back up because 's non convulsive

activity made the identifiation of the characteristic spike wave

pattern unreadable. After 6 months on the diet thee EEG had

improved lots, but still didn't conclusively have the LGS pattern.

I know the long term prognosis is still very harsh, but it sure

beats the 5% chance of " near normal intellectual function " that LGS

offers!

This is a bit off topic for the keto site - could you please email

me directly with any other bits and bobs of info you've picked up

over the years - I'd really like to find out more about 's

journey through the horrid disease!

Thank you so much for replying - I feel like a clockwork toy that's

just been wound up again, like I've got a BIT of new hope!

cheers

Gail