Re: Epileptiform activity without seizures

[Guest guest]

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

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

[Guest guest]

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

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

[Guest guest]

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

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

[Guest guest]

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

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

[Guest guest]

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

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

[Guest guest]

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

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

[Guest guest]

That's shocking that you've been offered nothing in all that time. Makes me

realise we've been lucky with referrals. Glad to hear you got the neuro

referral. Going in knowing exactly what you want sounds good. Not sure if I can

get to that position as I have no idea what they will suggest. Still I've got

time to do research. Also not sticking to treatment that doesn't give

significant improvements is good advice, makes sense - thank you.

Good luck with it and esp for language gains. Hope we get some too! Any kind of

language would be good right now :-)

Thanks for sharing, nah

>

> 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

>

[Guest guest]

That's shocking that you've been offered nothing in all that time. Makes me

realise we've been lucky with referrals. Glad to hear you got the neuro

referral. Going in knowing exactly what you want sounds good. Not sure if I can

get to that position as I have no idea what they will suggest. Still I've got

time to do research. Also not sticking to treatment that doesn't give

significant improvements is good advice, makes sense - thank you.

Good luck with it and esp for language gains. Hope we get some too! Any kind of

language would be good right now :-)

Thanks for sharing, nah

>

> 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

>

[Guest guest]

Dear nah,

We saw a very moving film about the ketogenic diet

It's called First Do No Harm

http://www.amazon.co.uk/First-Do-No-Harm-DVD/dp/B000EGCD28/ref=sr_1_1?ie\

=UTF8 & qid=1329867326 & sr=8-1

Best wishes,

Sandy

[Guest guest]

Like Mandi we are in the same position well worse because DS seizures are subtle and far apart but if we follow the others they will increase of intensity and frequency and then and only then they will act ....so we were not even offered an EEG at this point in time I was told by a local friend whose kid is ASD and started to have seizures in the beginning of puberty that they only look at you when the seizure takes you to hospital where you then will be offered a EEG

the most amazing part is that my mother that suffers from epilepsy since the 60's had more support that one of our kids today 50 years later ...

[Guest guest]

Like Mandi we are in the same position well worse because DS seizures are subtle and far apart but if we follow the others they will increase of intensity and frequency and then and only then they will act ....so we were not even offered an EEG at this point in time I was told by a local friend whose kid is ASD and started to have seizures in the beginning of puberty that they only look at you when the seizure takes you to hospital where you then will be offered a EEG

the most amazing part is that my mother that suffers from epilepsy since the 60's had more support that one of our kids today 50 years later ...

[Guest guest]

Thank you Sandy , I've ordered this along with Ken's book (all 2nd hand from

amazon for a rennet incl p & p :-)

>

> Dear nah,

>

> We saw a very moving film about the ketogenic diet

> It's called First Do No Harm

> http://www.amazon.co.uk/First-Do-No-Harm-DVD/dp/B000EGCD28/ref=sr_1_1?ie\

> =UTF8 & qid=1329867326 & sr=8-1

> Best wishes,

> Sandy

>

[Guest guest]

Thank you Sandy , I've ordered this along with Ken's book (all 2nd hand from

amazon for a rennet incl p & p :-)

>

> Dear nah,

>

> We saw a very moving film about the ketogenic diet

> It's called First Do No Harm

> http://www.amazon.co.uk/First-Do-No-Harm-DVD/dp/B000EGCD28/ref=sr_1_1?ie\

> =UTF8 & qid=1329867326 & sr=8-1

> Best wishes,

> Sandy

>

[Guest guest]

Yours and mandi's replies make me realise how lucky we are to have had the EEG

and MRI but also how much the referrals seem to depend on who you see, which is

so so bad. Do you think it's the same for a nt child who presents with seizures?

I wish you and your son all the best with this.

nah

>

> Like Mandi we are in the same position well worse because DS seizures are

> subtle and far apart but if we follow the others they will increase of

> intensity and frequency and then and only then they will act ....so we were

not

> even offered an EEG at this point in time I was told by a local friend

> whose kid is ASD and started to have seizures in the beginning of puberty that

> they only look at you when the seizure takes you to hospital where you then

> will be offered a EEG

>

> the most amazing part is that my mother that suffers from epilepsy since

> the 60's had more support that one of our kids today 50 years later ...

>

[Guest guest]

Yours and mandi's replies make me realise how lucky we are to have had the EEG

and MRI but also how much the referrals seem to depend on who you see, which is

so so bad. Do you think it's the same for a nt child who presents with seizures?

I wish you and your son all the best with this.

nah

>

> Like Mandi we are in the same position well worse because DS seizures are

> subtle and far apart but if we follow the others they will increase of

> intensity and frequency and then and only then they will act ....so we were

not

> even offered an EEG at this point in time I was told by a local friend

> whose kid is ASD and started to have seizures in the beginning of puberty that

> they only look at you when the seizure takes you to hospital where you then

> will be offered a EEG

>

> the most amazing part is that my mother that suffers from epilepsy since

> the 60's had more support that one of our kids today 50 years later ...

>

[Guest guest]

Yours and mandi's replies make me realise how lucky we are to have had the EEG

and MRI but also how much the referrals seem to depend on who you see, which is

so so bad. Do you think it's the same for a nt child who presents with seizures?

I wish you and your son all the best with this.

nah

>

> Like Mandi we are in the same position well worse because DS seizures are

> subtle and far apart but if we follow the others they will increase of

> intensity and frequency and then and only then they will act ....so we were

not

> even offered an EEG at this point in time I was told by a local friend

> whose kid is ASD and started to have seizures in the beginning of puberty that

> they only look at you when the seizure takes you to hospital where you then

> will be offered a EEG

>

> the most amazing part is that my mother that suffers from epilepsy since

> the 60's had more support that one of our kids today 50 years later ...

>

[Guest guest]

Oh no, NT kid whose mum I worked with who started seizures same time was bluelighted every seizure, all sorts she got including heavy meds that made her fat. She was a 26 w2eek premmie with bowel issues FWIW.

I was just told don't call an ambulance unless it goes on for 5 mins and its a good idea to video it,. We never had one last that long, only been to A & E when he bashed his head as he went down

Mx

Yours and mandi's replies make me realise how lucky we are to have had the EEG and MRI but also how much the referrals seem to depend on who you see, which is so so bad. Do you think it's the same for a nt child who presents with seizures? I wish you and your son all the best with this. nah>> Like Mandi we are in the same position well worse because DS seizures are > subtle and far apart but if we follow the others they will increase of > intensity and frequency and then and only then they will act ....so we were not > even offered an EEG at this point in time I was told by a local friend > whose kid is ASD and started to have seizures in the beginning of puberty that > they only look at you when the seizure takes you to hospital where you then > will be offered a EEG > > the most amazing part is that my mother that suffers from epilepsy since > the 60's had more support that one of our kids today 50 years later ...>

[Guest guest]

Oh no, NT kid whose mum I worked with who started seizures same time was bluelighted every seizure, all sorts she got including heavy meds that made her fat. She was a 26 w2eek premmie with bowel issues FWIW.

I was just told don't call an ambulance unless it goes on for 5 mins and its a good idea to video it,. We never had one last that long, only been to A & E when he bashed his head as he went down

Mx

Yours and mandi's replies make me realise how lucky we are to have had the EEG and MRI but also how much the referrals seem to depend on who you see, which is so so bad. Do you think it's the same for a nt child who presents with seizures? I wish you and your son all the best with this. nah>> Like Mandi we are in the same position well worse because DS seizures are > subtle and far apart but if we follow the others they will increase of > intensity and frequency and then and only then they will act ....so we were not > even offered an EEG at this point in time I was told by a local friend > whose kid is ASD and started to have seizures in the beginning of puberty that > they only look at you when the seizure takes you to hospital where you then > will be offered a EEG > > the most amazing part is that my mother that suffers from epilepsy since > the 60's had more support that one of our kids today 50 years later ...>

[Guest guest]

Oh no, NT kid whose mum I worked with who started seizures same time was bluelighted every seizure, all sorts she got including heavy meds that made her fat. She was a 26 w2eek premmie with bowel issues FWIW.

I was just told don't call an ambulance unless it goes on for 5 mins and its a good idea to video it,. We never had one last that long, only been to A & E when he bashed his head as he went down

Mx

Yours and mandi's replies make me realise how lucky we are to have had the EEG and MRI but also how much the referrals seem to depend on who you see, which is so so bad. Do you think it's the same for a nt child who presents with seizures? I wish you and your son all the best with this. nah>> Like Mandi we are in the same position well worse because DS seizures are > subtle and far apart but if we follow the others they will increase of > intensity and frequency and then and only then they will act ....so we were not > even offered an EEG at this point in time I was told by a local friend > whose kid is ASD and started to have seizures in the beginning of puberty that > they only look at you when the seizure takes you to hospital where you then > will be offered a EEG > > the most amazing part is that my mother that suffers from epilepsy since > the 60's had more support that one of our kids today 50 years later ...>

[Guest guest]

Difficult for me to say as I don't know the presentation and haven't seen the EEG. If it looks like TLE the might consider further testing - most of the surface of the temporal lobe can't be recorded from using surface electrodes. If it looks to be centrencephalic they might think about functiopnal imaging.... Difficult for me to comment further.Ken To:

Autism-Biomedical-Europe Sent: Tuesday, 21 February 2012, 21:40 Subject: Re: Epileptiform activity without seizures

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.Â

>

> 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.

>

> KenÂ

>

>

> ________________________________

>

> To: Autism-Biomedical-Europe

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

> Subject: Re: Epileptiform activity without seizures

>

>

> Â

> 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.Â

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

> my bits crossed for that side effect!

> Mx

> Â

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

> susannah_miles@... writes:

> Â

> >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

> >

> >

>

[Guest guest]

Difficult for me to say as I don't know the presentation and haven't seen the EEG. If it looks like TLE the might consider further testing - most of the surface of the temporal lobe can't be recorded from using surface electrodes. If it looks to be centrencephalic they might think about functiopnal imaging.... Difficult for me to comment further.Ken To:

Autism-Biomedical-Europe Sent: Tuesday, 21 February 2012, 21:40 Subject: Re: Epileptiform activity without seizures

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.Â

>

> 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.

>

> KenÂ

>

>

> ________________________________

>

> To: Autism-Biomedical-Europe

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

> Subject: Re: Epileptiform activity without seizures

>

>

> Â

> 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.Â

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

> my bits crossed for that side effect!

> Mx

> Â

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

> susannah_miles@... writes:

> Â

> >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

> >

> >

>

[Guest guest]

Difficult for me to say as I don't know the presentation and haven't seen the EEG. If it looks like TLE the might consider further testing - most of the surface of the temporal lobe can't be recorded from using surface electrodes. If it looks to be centrencephalic they might think about functiopnal imaging.... Difficult for me to comment further.Ken To:

Autism-Biomedical-Europe Sent: Tuesday, 21 February 2012, 21:40 Subject: Re: Epileptiform activity without seizures

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.Â

>

> 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.

>

> KenÂ

>

>

> ________________________________

>

> To: Autism-Biomedical-Europe

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

> Subject: Re: Epileptiform activity without seizures

>

>

> Â

> 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.Â

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

> my bits crossed for that side effect!

> Mx

> Â

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

> susannah_miles@... writes:

> Â

> >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

> >

> >

>

[Guest guest]

Hi Mandi,

My daughter is fifteen and had four generalised seizures from age four to

eleven, they were all febrile. Last summer, she had one out of the blue in

school on the playground. This has been followed by about one every month, a

couple were generalised, the rest have been partial. We did a video EEG in

November, this was for two days, during which she had no seizures but one 6

second generalised epileptiform discharge. We were given a prescription for

Lamictal, but the neurologist said he was only recommending it for safety

reasons as he did not think the seizures were causing any damage per se. I also

told him that she had been on a diet that was pretty high fat, 75-80% fat,

10-12% carb and protein. He said that those were the ratios that they use for a

modified ketogenic diet, which they refer to as modified atkins type diet and

that it is often quite effective at controlling seizures. I had veered away

from it somewhat over the last year and he said it would be good to go back on

it.

As it happens, we have not gone back to the low carb version, instead Ishko has

been eating quite a bit of corn chips and fries. Well, in the last month, she

has had three partial seizures and am very concerned about the increase in

frequency. We had an especially long one yesterday when she also started a

throat infection (which I think had been brewing for four days or so) and are

due for a consult with the neurologist again. The paediatric epieleptologist

who was on call yesterday and whom we spoke to, said that there were drugs like

Atavan(sp) that could be administered at point of seizure if they were

generalised and went on too long. She said we would have to decide which route

we would like to go, this type or the Lamictal. I remember you mentioned a

particular one that promoted expressive speech that you were keen on trailing

with Sam. I have searched the posts and can't find it. Could you tell me what

it is?

Thanks,

Radhe

>

> 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

>

[Guest guest]

Hi Mandi,

My daughter is fifteen and had four generalised seizures from age four to

eleven, they were all febrile. Last summer, she had one out of the blue in

school on the playground. This has been followed by about one every month, a

couple were generalised, the rest have been partial. We did a video EEG in

November, this was for two days, during which she had no seizures but one 6

second generalised epileptiform discharge. We were given a prescription for

Lamictal, but the neurologist said he was only recommending it for safety

reasons as he did not think the seizures were causing any damage per se. I also

told him that she had been on a diet that was pretty high fat, 75-80% fat,

10-12% carb and protein. He said that those were the ratios that they use for a

modified ketogenic diet, which they refer to as modified atkins type diet and

that it is often quite effective at controlling seizures. I had veered away

from it somewhat over the last year and he said it would be good to go back on

it.

As it happens, we have not gone back to the low carb version, instead Ishko has

been eating quite a bit of corn chips and fries. Well, in the last month, she

has had three partial seizures and am very concerned about the increase in

frequency. We had an especially long one yesterday when she also started a

throat infection (which I think had been brewing for four days or so) and are

due for a consult with the neurologist again. The paediatric epieleptologist

who was on call yesterday and whom we spoke to, said that there were drugs like

Atavan(sp) that could be administered at point of seizure if they were

generalised and went on too long. She said we would have to decide which route

we would like to go, this type or the Lamictal. I remember you mentioned a

particular one that promoted expressive speech that you were keen on trailing

with Sam. I have searched the posts and can't find it. Could you tell me what

it is?

Thanks,

Radhe

>

> 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

>

[Guest guest]

Hi Mandi,

My daughter is fifteen and had four generalised seizures from age four to

eleven, they were all febrile. Last summer, she had one out of the blue in

school on the playground. This has been followed by about one every month, a

couple were generalised, the rest have been partial. We did a video EEG in

November, this was for two days, during which she had no seizures but one 6

second generalised epileptiform discharge. We were given a prescription for

Lamictal, but the neurologist said he was only recommending it for safety

reasons as he did not think the seizures were causing any damage per se. I also

told him that she had been on a diet that was pretty high fat, 75-80% fat,

10-12% carb and protein. He said that those were the ratios that they use for a

modified ketogenic diet, which they refer to as modified atkins type diet and

that it is often quite effective at controlling seizures. I had veered away

from it somewhat over the last year and he said it would be good to go back on

it.

As it happens, we have not gone back to the low carb version, instead Ishko has

been eating quite a bit of corn chips and fries. Well, in the last month, she

has had three partial seizures and am very concerned about the increase in

frequency. We had an especially long one yesterday when she also started a

throat infection (which I think had been brewing for four days or so) and are

due for a consult with the neurologist again. The paediatric epieleptologist

who was on call yesterday and whom we spoke to, said that there were drugs like

Atavan(sp) that could be administered at point of seizure if they were

generalised and went on too long. She said we would have to decide which route

we would like to go, this type or the Lamictal. I remember you mentioned a

particular one that promoted expressive speech that you were keen on trailing

with Sam. I have searched the posts and can't find it. Could you tell me what

it is?

Thanks,

Radhe

>

> 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

>