Re: Epileptiform activity without seizures

[Guest guest]

Thank you, yes that's very helpful. I'll look into Chez in more detail although

from what you said it doesn't sound like they will prescribe aeds. Somwhere I

read they also mentioned steroids. Do you think they might suggest that or

unlikely? Weve discussed doing some with Breakspear to address inflammation,

which chez also discuses I think. Do you have any idea what they might suggest

other than repeating EEG ( which was an awful experience!)

Thanks also for pointer to ketogenic diet. I'll read up on it.

Thanks again,

nah

>

> The Chez series from Chicago is really the only large-scale study that reports

Jtreating epileptiform EEG abnormalities in children with ASD who have not

presented with actual seizures. I don't think it is standard practice in the UK

anywhere at present to suggest such proactive use of AEDs. 

>

> There is of course also an overlap with the use of ketogenic diet both in

control of seizures and in work with ASD. I did reference material on this in my

ASD diet book.

>

> Hope this helps.

>

> Ken 

>

>

> ________________________________

>

> To: Autism-Biomedical-Europe

> Sent: Tuesday, 21 February 2012, 18:40

> Subject: Re: Epileptiform activity without seizures

>

>

>  

> My son has actual seizures for 15 months now and apart from sedated EEG we

> have not been offered anything, not even a Dx. I asked for referral to Paed

> Neuro which is going to be at end of May. I already decided which AED I want

if

> they suggest it, I think most important thing is not to get the kids on a

> lifetime regime, I said no improvement in child (not tests) in 6 month I want

> him off it. School nurse said that is much more common way to work these days.

> We do TST and I am hopeful that will sort issue in the long term. 

> I am told that the right AED's can promote expressive language, I Have all

> my bits crossed for that side effect!

> Mx

>  

> In a message dated 21/02/2012 14:51:31 GMT Standard Time,

> susannah_miles@... writes:

>  

> >We had our gosh metabolics referral and blood and urines pointed no

abnormalities ( meaning inborn). But EEG showed abnormal Epileptiform activity

which has got us a referral to neurology.

> >

> >So Knowing absolutely

> nothing about this ive done some Googling and it seems it's not uncommon in

> asd (Epileptiform activity especially during sleep, normal MRI, no

seizures).

> Chez comes up amongst others.

> >

> >From my very limited reading I

> learnt that treatment can include AEDs, steroids or even surgery!

> >

> >Just

> wondering if anyone had ever had similar results, where it lead them and

what

> treatment was offered on nhs?

> >I'm trying to anticipate what will be

> discussed at appointment .

> >

> >Many thanks for any thoughts.

> nah

> >

> >

>