Re: Can I speak to someone about Foresight and supplements, please?

[Guest guest]

Margaret,

Some thoughts on seizures - unless you're getting it compounded, tegretol has a

milk component. Via Willis from another group: " Tegretol is a horrible drug that

ought not be on the market. It robs the system of folic acid and vitamin D

(already grossly lacking), decreases calcium, vitamin E, alpha-ketoglutarate

(causing an increase of ammonia), carnitine, sodium, and lithium. These

nutrients must be supplemented when using Tegretol or serious damage will be

done. "

Maximum doses of tegretol here did nothing to control seizures and I had no clue

to above. Neither did the neuro! as it was never mentioned. A switch to depakote

was even more disasterous and changed the seizure expression to a much more

severe form. It was gluten and casein causing them 99% of the time.Have you IgG

alergy tested or done a withdrawal diet? You can find info on biotin depletion

and seizures - after reading such I began increasing biotin. We're up to

80mg/day with no negatives and a much calmer person. Giving the 'mito cocktail'

has also seemed to help including B1 and B2 in what I consider high amounts. All

the aniconvulsants interfer with the folate cycle so we also use pretty high

folate supplementation. In every test we've done, a need for folate, B12, zinc,

B6[P5P], selenium, iodine has been shown. It seems like we're always playing

catch up. Yucca works well for the ammonia which we still see evidence of

occasionally. Have you chelated AC way. DMSA is a good lead chelator. My 11y

grandson had high lead levels as a toddler[40-50 plasma] and mercury toxic as

well. He made a good turn around with DMSA acc to the Cutler protocol.

>

> Joanne's post reminded me to contact Mrs again, as she was spot on when

Henry was a baby about what would stop Henry's seizures.

> We did their programme for several years to try and get lead out but I gave up

because we weren't apparently getting a good result.

> They use a standard set of supplements.

>

> If anyone has the time, could we speak, please? Mrs mentioned manganese

as being needed. We supplemented with their zinc for years but (by their

analysis) Henry remained chronically low in zinc. I gave up.

>

> I am very unhappy about the Tegretol H is now on.

>

> Margaret

>

[Guest guest]

Dear ,

I followed up on the link you posted earlier re Tegretol but felt at the time at

a loss what to do. I wonder whether I need to see a nutritionist to help with

the amounts/types of nutrients to supplement to try and limit the damage from

this drug. I spoke to Nium this morning who said Tegretol contains copper

(I need to check this) and she said it would make his seizures worse. Actually

he has been on it since late August (now at half dose ie 400mg/day - they want

him on 800mg) and has only had one seizure - and that was 24 hours after a

missed dose when he was only on one tablet a day. He is also still on his P5P at

250mg day but at the moment no magnesium as I don't know what type to give or at

what dose. Mrs said giving magnesium would deplete manganese and other

things too - and she thinks seizures are actually casued by low manganese. I did

not manage to establish how much manganese to give and I do not know what dose

of manganese would be toxic, either.

Now the P5P could either be helping Henry to manage on a lower dose of tegretol

than perhaps otherwise - or it could be hindering. I don't know how to establish

this - but bearing in mind B6 was a miracle for Henry's seizures in infancy it

is more likely to be a help than a hindrance.

I'll look to see what;s in the Tegretol. Henry has dairy, in any event at the

moment. Perhaps we need to try dairy-free for a while. He hasn't been GFCF for

about 7 years: I never noticed anything when we put him back on these foods, but

I am not very good at noticing reactions, I think. (And I was never confident

that the diet was being kept when he wasn't with me...)

We haven't chelated because of family issues and also problems with social

services etc in the past.

Margaret

> >

> > Joanne's post reminded me to contact Mrs again, as she was spot on

when Henry was a baby about what would stop Henry's seizures.

> > We did their programme for several years to try and get lead out but I gave

up because we weren't apparently getting a good result.

> > They use a standard set of supplements.

> >

> > If anyone has the time, could we speak, please? Mrs mentioned

manganese as being needed. We supplemented with their zinc for years but (by

their analysis) Henry remained chronically low in zinc. I gave up.

> >

> > I am very unhappy about the Tegretol H is now on.

> >

> > Margaret

> >

>

[Guest guest]

Dear ,

I followed up on the link you posted earlier re Tegretol but felt at the time at

a loss what to do. I wonder whether I need to see a nutritionist to help with

the amounts/types of nutrients to supplement to try and limit the damage from

this drug. I spoke to Nium this morning who said Tegretol contains copper

(I need to check this) and she said it would make his seizures worse. Actually

he has been on it since late August (now at half dose ie 400mg/day - they want

him on 800mg) and has only had one seizure - and that was 24 hours after a

missed dose when he was only on one tablet a day. He is also still on his P5P at

250mg day but at the moment no magnesium as I don't know what type to give or at

what dose. Mrs said giving magnesium would deplete manganese and other

things too - and she thinks seizures are actually casued by low manganese. I did

not manage to establish how much manganese to give and I do not know what dose

of manganese would be toxic, either.

Now the P5P could either be helping Henry to manage on a lower dose of tegretol

than perhaps otherwise - or it could be hindering. I don't know how to establish

this - but bearing in mind B6 was a miracle for Henry's seizures in infancy it

is more likely to be a help than a hindrance.

I'll look to see what;s in the Tegretol. Henry has dairy, in any event at the

moment. Perhaps we need to try dairy-free for a while. He hasn't been GFCF for

about 7 years: I never noticed anything when we put him back on these foods, but

I am not very good at noticing reactions, I think. (And I was never confident

that the diet was being kept when he wasn't with me...)

We haven't chelated because of family issues and also problems with social

services etc in the past.

Margaret

> >

> > Joanne's post reminded me to contact Mrs again, as she was spot on

when Henry was a baby about what would stop Henry's seizures.

> > We did their programme for several years to try and get lead out but I gave

up because we weren't apparently getting a good result.

> > They use a standard set of supplements.

> >

> > If anyone has the time, could we speak, please? Mrs mentioned

manganese as being needed. We supplemented with their zinc for years but (by

their analysis) Henry remained chronically low in zinc. I gave up.

> >

> > I am very unhappy about the Tegretol H is now on.

> >

> > Margaret

> >

>

[Guest guest]

Dear ,

I followed up on the link you posted earlier re Tegretol but felt at the time at

a loss what to do. I wonder whether I need to see a nutritionist to help with

the amounts/types of nutrients to supplement to try and limit the damage from

this drug. I spoke to Nium this morning who said Tegretol contains copper

(I need to check this) and she said it would make his seizures worse. Actually

he has been on it since late August (now at half dose ie 400mg/day - they want

him on 800mg) and has only had one seizure - and that was 24 hours after a

missed dose when he was only on one tablet a day. He is also still on his P5P at

250mg day but at the moment no magnesium as I don't know what type to give or at

what dose. Mrs said giving magnesium would deplete manganese and other

things too - and she thinks seizures are actually casued by low manganese. I did

not manage to establish how much manganese to give and I do not know what dose

of manganese would be toxic, either.

Now the P5P could either be helping Henry to manage on a lower dose of tegretol

than perhaps otherwise - or it could be hindering. I don't know how to establish

this - but bearing in mind B6 was a miracle for Henry's seizures in infancy it

is more likely to be a help than a hindrance.

I'll look to see what;s in the Tegretol. Henry has dairy, in any event at the

moment. Perhaps we need to try dairy-free for a while. He hasn't been GFCF for

about 7 years: I never noticed anything when we put him back on these foods, but

I am not very good at noticing reactions, I think. (And I was never confident

that the diet was being kept when he wasn't with me...)

We haven't chelated because of family issues and also problems with social

services etc in the past.

Margaret

> >

> > Joanne's post reminded me to contact Mrs again, as she was spot on

when Henry was a baby about what would stop Henry's seizures.

> > We did their programme for several years to try and get lead out but I gave

up because we weren't apparently getting a good result.

> > They use a standard set of supplements.

> >

> > If anyone has the time, could we speak, please? Mrs mentioned

manganese as being needed. We supplemented with their zinc for years but (by

their analysis) Henry remained chronically low in zinc. I gave up.

> >

> > I am very unhappy about the Tegretol H is now on.

> >

> > Margaret

> >

>

[Guest guest]

Tegretol contains copper (I need to check

this) and she said it would make his seizures worse.

It certainly made seizures a hundred times worse for

.....turned occasional barely noticeable Petit mals into

approx 10 drop absences an hour ( on the lowest dose and was not on

any supplements at the time).

Dear ,

I followed up on the link you posted earlier re Tegretol

but felt at the time at a loss what to do. I wonder

whether I need to see a nutritionist to help with the

amounts/types of nutrients to supplement to try and limit

the damage from this drug. I spoke to Nium this

morning who said Tegretol contains copper (I need to check

this) and she said it would make his seizures worse.

Actually he has been on it since late August (now at half

dose ie 400mg/day - they want him on 800mg) and has only

had one seizure - and that was 24 hours after a missed

dose when he was only on one tablet a day. He is also

still on his P5P at 250mg day but at the moment no

magnesium as I don't know what type to give or at what

dose. Mrs said giving magnesium would deplete

manganese and other things too - and she thinks seizures

are actually casued by low manganese. I did not manage to

establish how much manganese to give and I do not know

what dose of manganese would be toxic, either.

Now the P5P could either be helping Henry to manage on a

lower dose of tegretol than perhaps otherwise - or it

could be hindering. I don't know how to establish this -

but bearing in mind B6 was a miracle for Henry's seizures

in infancy it is more likely to be a help than a

hindrance.

I'll look to see what;s in the Tegretol. Henry has dairy,

in any event at the moment. Perhaps we need to try

dairy-free for a while. He hasn't been GFCF for about 7

years: I never noticed anything when we put him back on

these foods, but I am not very good at noticing reactions,

I think. (And I was never confident that the diet was

being kept when he wasn't with me...)

We haven't chelated because of family issues and also

problems with social services etc in the past.

Margaret

> >

> > Joanne's post reminded me to contact Mrs

again, as she was spot on when Henry was a baby about what

would stop Henry's seizures.

> > We did their programme for several years to try

and get lead out but I gave up because we weren't

apparently getting a good result.

> > They use a standard set of supplements.

> >

> > If anyone has the time, could we speak, please?

Mrs mentioned manganese as being needed. We

supplemented with their zinc for years but (by their

analysis) Henry remained chronically low in zinc. I gave

up.

> >

> > I am very unhappy about the Tegretol H is now

on.

> >

> > Margaret

> >

>

No virus found in this message.

Checked by AVG - www.avg.com

Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date:

09/13/11

[Guest guest]

Dear and ,

Thank you for your post.I know Tegretol is not supposed to be used for absence

seizures. Henry's main type is partial seizures, lasting up to 11 minutes, with

a gradual tail-off and return to consciousness. I don't thik he has absence

seizures. Were the " petits-mals " in your child absence seizures or some other

kind, please?

I read this today in a medscape article on absence seizures

http://emedicine.medscape.com/article/1183858-overview#aw2aab6c10

<<< Some AEDs can aggravate [absence - my insert] seizures, especially in

cryptogenic or symptomatic generalized epilepsies.[38] Treatment with

carbamazepine (Tegretol, Tegretol XR, Carbatrol)[39, 40] and oxcarbazepine

(Trileptal)[41] has been associated with the exacerbation of absence seizures.

>>>

Did you find any supplements or change of diet helped your child?

Margaret

> > > >

> > > > Joanne's post reminded me to contact Mrs again, as she was

> > spot on when Henry was a baby about what would stop Henry's seizures.

> > > > We did their programme for several years to try and get lead out

> > but I gave up because we weren't apparently getting a good result.

> > > > They use a standard set of supplements.

> > > >

> > > > If anyone has the time, could we speak, please? Mrs

> > mentioned manganese as being needed. We supplemented with their zinc

> > for years but (by their analysis) Henry remained chronically low in

> > zinc. I gave up.

> > > >

> > > > I am very unhappy about the Tegretol H is now on.

> > > >

> > > > Margaret

> > > >

> > >

> >

> >

> >

> > No virus found in this message.

> > Checked by AVG - www.avg.com <http://www.avg.com>

> > Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date: 09/13/11

> >

>

[Guest guest]

Dear and ,

Thank you for your post.I know Tegretol is not supposed to be used for absence

seizures. Henry's main type is partial seizures, lasting up to 11 minutes, with

a gradual tail-off and return to consciousness. I don't thik he has absence

seizures. Were the " petits-mals " in your child absence seizures or some other

kind, please?

I read this today in a medscape article on absence seizures

http://emedicine.medscape.com/article/1183858-overview#aw2aab6c10

<<< Some AEDs can aggravate [absence - my insert] seizures, especially in

cryptogenic or symptomatic generalized epilepsies.[38] Treatment with

carbamazepine (Tegretol, Tegretol XR, Carbatrol)[39, 40] and oxcarbazepine

(Trileptal)[41] has been associated with the exacerbation of absence seizures.

>>>

Did you find any supplements or change of diet helped your child?

Margaret

> > > >

> > > > Joanne's post reminded me to contact Mrs again, as she was

> > spot on when Henry was a baby about what would stop Henry's seizures.

> > > > We did their programme for several years to try and get lead out

> > but I gave up because we weren't apparently getting a good result.

> > > > They use a standard set of supplements.

> > > >

> > > > If anyone has the time, could we speak, please? Mrs

> > mentioned manganese as being needed. We supplemented with their zinc

> > for years but (by their analysis) Henry remained chronically low in

> > zinc. I gave up.

> > > >

> > > > I am very unhappy about the Tegretol H is now on.

> > > >

> > > > Margaret

> > > >

> > >

> >

> >

> >

> > No virus found in this message.

> > Checked by AVG - www.avg.com <http://www.avg.com>

> > Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date: 09/13/11

> >

>

[Guest guest]

check out matthewsfriends clinic for information about diet.

x

Re: Can I speak to someone about Foresight and supplements, please?

Dear and , Thank you for your post.I know Tegretol is not supposed to be used for absence seizures. Henry's main type is partial seizures, lasting up to 11 minutes, with a gradual tail-off and return to consciousness. I don't thik he has absence seizures. Were the "petits-mals" in your child absence seizures or some other kind, please?I read this today in a medscape article on absence seizures http://emedicine.medscape.com/article/1183858-overview#aw2aab6c10<<< Some AEDs can aggravate [absence - my insert] seizures, especially in cryptogenic or symptomatic generalized epilepsies.[38] Treatment with carbamazepine (Tegretol, Tegretol XR, Carbatrol)[39, 40] and oxcarbazepine (Trileptal)[41] has been associated with the exacerbation of absence seizures. >>>Did you find any supplements or change of diet helped your child?Margaret> > > >> > > > Joanne's post reminded me to contact Mrs again, as she was > > spot on when Henry was a baby about what would stop Henry's seizures.> > > > We did their programme for several years to try and get lead out > > but I gave up because we weren't apparently getting a good result.> > > > They use a standard set of supplements.> > > >> > > > If anyone has the time, could we speak, please? Mrs > > mentioned manganese as being needed. We supplemented with their zinc > > for years but (by their analysis) Henry remained chronically low in > > zinc. I gave up.> > > >> > > > I am very unhappy about the Tegretol H is now on.> > > >> > > > Margaret> > > >> > >> >> > > >> > No virus found in this message.> > Checked by AVG - www.avg.com <http://www.avg.com>> > Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date: 09/13/11> >>

[Guest guest]

check out matthewsfriends clinic for information about diet.

x

Re: Can I speak to someone about Foresight and supplements, please?

Dear and , Thank you for your post.I know Tegretol is not supposed to be used for absence seizures. Henry's main type is partial seizures, lasting up to 11 minutes, with a gradual tail-off and return to consciousness. I don't thik he has absence seizures. Were the "petits-mals" in your child absence seizures or some other kind, please?I read this today in a medscape article on absence seizures http://emedicine.medscape.com/article/1183858-overview#aw2aab6c10<<< Some AEDs can aggravate [absence - my insert] seizures, especially in cryptogenic or symptomatic generalized epilepsies.[38] Treatment with carbamazepine (Tegretol, Tegretol XR, Carbatrol)[39, 40] and oxcarbazepine (Trileptal)[41] has been associated with the exacerbation of absence seizures. >>>Did you find any supplements or change of diet helped your child?Margaret> > > >> > > > Joanne's post reminded me to contact Mrs again, as she was > > spot on when Henry was a baby about what would stop Henry's seizures.> > > > We did their programme for several years to try and get lead out > > but I gave up because we weren't apparently getting a good result.> > > > They use a standard set of supplements.> > > >> > > > If anyone has the time, could we speak, please? Mrs > > mentioned manganese as being needed. We supplemented with their zinc > > for years but (by their analysis) Henry remained chronically low in > > zinc. I gave up.> > > >> > > > I am very unhappy about the Tegretol H is now on.> > > >> > > > Margaret> > > >> > >> >> > > >> > No virus found in this message.> > Checked by AVG - www.avg.com <http://www.avg.com>> > Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date: 09/13/11> >>

[Guest guest]

Thank you: I hadn't heard of them before. They are setting up a new clinic to

support health and wellp-being in epilepsy and I gather they will include the

issues of using supplements to help counter problems cause by AEDs.They will be

sending me some information in due course.

Margaret

> > > > >

> > > > > Joanne's post reminded me to contact Mrs again, as she was

> > > spot on when Henry was a baby about what would stop Henry's seizures.

> > > > > We did their programme for several years to try and get lead out

> > > but I gave up because we weren't apparently getting a good result.

> > > > > They use a standard set of supplements.

> > > > >

> > > > > If anyone has the time, could we speak, please? Mrs

> > > mentioned manganese as being needed. We supplemented with their zinc

> > > for years but (by their analysis) Henry remained chronically low in

> > > zinc. I gave up.

> > > > >

> > > > > I am very unhappy about the Tegretol H is now on.

> > > > >

> > > > > Margaret

> > > > >

> > > >

> > >

> > >

> > >

> > > No virus found in this message.

> > > Checked by AVG - www.avg.com <http://www.avg.com>

> > > Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date: 09/13/11

> > >

> >

>

[Guest guest]

Thank you: I hadn't heard of them before. They are setting up a new clinic to

support health and wellp-being in epilepsy and I gather they will include the

issues of using supplements to help counter problems cause by AEDs.They will be

sending me some information in due course.

Margaret

> > > > >

> > > > > Joanne's post reminded me to contact Mrs again, as she was

> > > spot on when Henry was a baby about what would stop Henry's seizures.

> > > > > We did their programme for several years to try and get lead out

> > > but I gave up because we weren't apparently getting a good result.

> > > > > They use a standard set of supplements.

> > > > >

> > > > > If anyone has the time, could we speak, please? Mrs

> > > mentioned manganese as being needed. We supplemented with their zinc

> > > for years but (by their analysis) Henry remained chronically low in

> > > zinc. I gave up.

> > > > >

> > > > > I am very unhappy about the Tegretol H is now on.

> > > > >

> > > > > Margaret

> > > > >

> > > >

> > >

> > >

> > >

> > > No virus found in this message.

> > > Checked by AVG - www.avg.com <http://www.avg.com>

> > > Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date: 09/13/11

> > >

> >

>

[Guest guest]

Dear Margaret,

Thanks for the article also very interesting about the copper.

has absence seizures (he stares into the distance for a split

second and then swallows a couple of times, like he has 'woken up').

He had an EEG which showed nothing and he was put on Ethosiximide by

his paediatrician (as recommended in the link you sent)...this was

disastrous and, on the lowest dose, caused internal bleeding (was on

a drip for 3 weeks and extremely ill). We were then bullied, by the

epilespy department at Leeds General Infirmary, into putting him on

to Tegratol making things worse (wouldn't listen when we said it was

worse)....then epilim which made him aggressive.

After these chaotic, frightening experiences I went it alone, did

some googleing and went GF & CF and tried magnesium, manganese,

taurine and calcium (specifically for eye gauging which worked). We

didn't do any testing and were just lucky that the things that came

up most frequently on google were the things that worked for him.

His seizures were controlled well with these and only returned if he

was ill, infringed his diet or was constipated.......or when I added

in some supplements like fish oils etc.

He is currently not on any of these supplements (for controlling

his seizures) as he does not seem to tolerate/need? them. I am at a

bit of a loss as to why (have a few ideas) and very worried that the

petit mals will return (magnesium seemed to be lowering his blood

pressure and he was passing out).

This was all when he was 7 and he is now almost 17! I hope something

helps H. The link that sent looks hopeful, I am putting that

in my folder of things for the future, please let me know how you

get on with this.

Dear and ,

Thank you for your post.I know Tegretol is not supposed to

be used for absence seizures. Henry's main type is partial

seizures, lasting up to 11 minutes, with a gradual

tail-off and return to consciousness. I don't thik he has

absence seizures. Were the "petits-mals" in your child

absence seizures or some other kind, please?

I read this today in a medscape article on absence

seizures http://emedicine.medscape.com/article/1183858-overview#aw2aab6c10

<<< Some AEDs can aggravate [absence - my insert]

seizures, especially in cryptogenic or symptomatic

generalized epilepsies.[38] Treatment with carbamazepine

(Tegretol, Tegretol XR, Carbatrol)[39, 40] and

oxcarbazepine (Trileptal)[41] has been associated with the

exacerbation of absence seizures. >>>

Did you find any supplements or change of diet helped your

child?

Margaret

> > > >

> > > > Joanne's post reminded me to contact

Mrs again, as she was

> > spot on when Henry was a baby about what would

stop Henry's seizures.

> > > > We did their programme for several

years to try and get lead out

> > but I gave up because we weren't apparently

getting a good result.

> > > > They use a standard set of

supplements.

> > > >

> > > > If anyone has the time, could we

speak, please? Mrs

> > mentioned manganese as being needed. We

supplemented with their zinc

> > for years but (by their analysis) Henry remained

chronically low in

> > zinc. I gave up.

> > > >

> > > > I am very unhappy about the Tegretol H

is now on.

> > > >

> > > > Margaret

> > > >

> > >

> >

> >

> >

> > No virus found in this message.

> > Checked by AVG - www.avg.com <http://www.avg.com>

> > Version: 10.0.1392 / Virus Database: 1520/3894 -

Release Date: 09/13/11

> >

>

No virus found in this message.

Checked by AVG - www.avg.com

Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date:

09/13/11

[Guest guest]

Dear Margaret,

Thanks for the article also very interesting about the copper.

has absence seizures (he stares into the distance for a split

second and then swallows a couple of times, like he has 'woken up').

He had an EEG which showed nothing and he was put on Ethosiximide by

his paediatrician (as recommended in the link you sent)...this was

disastrous and, on the lowest dose, caused internal bleeding (was on

a drip for 3 weeks and extremely ill). We were then bullied, by the

epilespy department at Leeds General Infirmary, into putting him on

to Tegratol making things worse (wouldn't listen when we said it was

worse)....then epilim which made him aggressive.

After these chaotic, frightening experiences I went it alone, did

some googleing and went GF & CF and tried magnesium, manganese,

taurine and calcium (specifically for eye gauging which worked). We

didn't do any testing and were just lucky that the things that came

up most frequently on google were the things that worked for him.

His seizures were controlled well with these and only returned if he

was ill, infringed his diet or was constipated.......or when I added

in some supplements like fish oils etc.

He is currently not on any of these supplements (for controlling

his seizures) as he does not seem to tolerate/need? them. I am at a

bit of a loss as to why (have a few ideas) and very worried that the

petit mals will return (magnesium seemed to be lowering his blood

pressure and he was passing out).

This was all when he was 7 and he is now almost 17! I hope something

helps H. The link that sent looks hopeful, I am putting that

in my folder of things for the future, please let me know how you

get on with this.

Dear and ,

Thank you for your post.I know Tegretol is not supposed to

be used for absence seizures. Henry's main type is partial

seizures, lasting up to 11 minutes, with a gradual

tail-off and return to consciousness. I don't thik he has

absence seizures. Were the "petits-mals" in your child

absence seizures or some other kind, please?

I read this today in a medscape article on absence

seizures http://emedicine.medscape.com/article/1183858-overview#aw2aab6c10

<<< Some AEDs can aggravate [absence - my insert]

seizures, especially in cryptogenic or symptomatic

generalized epilepsies.[38] Treatment with carbamazepine

(Tegretol, Tegretol XR, Carbatrol)[39, 40] and

oxcarbazepine (Trileptal)[41] has been associated with the

exacerbation of absence seizures. >>>

Did you find any supplements or change of diet helped your

child?

Margaret

> > > >

> > > > Joanne's post reminded me to contact

Mrs again, as she was

> > spot on when Henry was a baby about what would

stop Henry's seizures.

> > > > We did their programme for several

years to try and get lead out

> > but I gave up because we weren't apparently

getting a good result.

> > > > They use a standard set of

supplements.

> > > >

> > > > If anyone has the time, could we

speak, please? Mrs

> > mentioned manganese as being needed. We

supplemented with their zinc

> > for years but (by their analysis) Henry remained

chronically low in

> > zinc. I gave up.

> > > >

> > > > I am very unhappy about the Tegretol H

is now on.

> > > >

> > > > Margaret

> > > >

> > >

> >

> >

> >

> > No virus found in this message.

> > Checked by AVG - www.avg.com <http://www.avg.com>

> > Version: 10.0.1392 / Virus Database: 1520/3894 -

Release Date: 09/13/11

> >

>

No virus found in this message.

Checked by AVG - www.avg.com

Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date:

09/13/11

[Guest guest]

Dear Margaret,

Thanks for the article also very interesting about the copper.

has absence seizures (he stares into the distance for a split

second and then swallows a couple of times, like he has 'woken up').

He had an EEG which showed nothing and he was put on Ethosiximide by

his paediatrician (as recommended in the link you sent)...this was

disastrous and, on the lowest dose, caused internal bleeding (was on

a drip for 3 weeks and extremely ill). We were then bullied, by the

epilespy department at Leeds General Infirmary, into putting him on

to Tegratol making things worse (wouldn't listen when we said it was

worse)....then epilim which made him aggressive.

After these chaotic, frightening experiences I went it alone, did

some googleing and went GF & CF and tried magnesium, manganese,

taurine and calcium (specifically for eye gauging which worked). We

didn't do any testing and were just lucky that the things that came

up most frequently on google were the things that worked for him.

His seizures were controlled well with these and only returned if he

was ill, infringed his diet or was constipated.......or when I added

in some supplements like fish oils etc.

He is currently not on any of these supplements (for controlling

his seizures) as he does not seem to tolerate/need? them. I am at a

bit of a loss as to why (have a few ideas) and very worried that the

petit mals will return (magnesium seemed to be lowering his blood

pressure and he was passing out).

This was all when he was 7 and he is now almost 17! I hope something

helps H. The link that sent looks hopeful, I am putting that

in my folder of things for the future, please let me know how you

get on with this.

Dear and ,

Thank you for your post.I know Tegretol is not supposed to

be used for absence seizures. Henry's main type is partial

seizures, lasting up to 11 minutes, with a gradual

tail-off and return to consciousness. I don't thik he has

absence seizures. Were the "petits-mals" in your child

absence seizures or some other kind, please?

I read this today in a medscape article on absence

seizures http://emedicine.medscape.com/article/1183858-overview#aw2aab6c10

<<< Some AEDs can aggravate [absence - my insert]

seizures, especially in cryptogenic or symptomatic

generalized epilepsies.[38] Treatment with carbamazepine

(Tegretol, Tegretol XR, Carbatrol)[39, 40] and

oxcarbazepine (Trileptal)[41] has been associated with the

exacerbation of absence seizures. >>>

Did you find any supplements or change of diet helped your

child?

Margaret

> > > >

> > > > Joanne's post reminded me to contact

Mrs again, as she was

> > spot on when Henry was a baby about what would

stop Henry's seizures.

> > > > We did their programme for several

years to try and get lead out

> > but I gave up because we weren't apparently

getting a good result.

> > > > They use a standard set of

supplements.

> > > >

> > > > If anyone has the time, could we

speak, please? Mrs

> > mentioned manganese as being needed. We

supplemented with their zinc

> > for years but (by their analysis) Henry remained

chronically low in

> > zinc. I gave up.

> > > >

> > > > I am very unhappy about the Tegretol H

is now on.

> > > >

> > > > Margaret

> > > >

> > >

> >

> >

> >

> > No virus found in this message.

> > Checked by AVG - www.avg.com <http://www.avg.com>

> > Version: 10.0.1392 / Virus Database: 1520/3894 -

Release Date: 09/13/11

> >

>

No virus found in this message.

Checked by AVG - www.avg.com

Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date:

09/13/11

[Guest guest]

I haven't established the effect on copper in the body yet. I think it's not

clear cut: serum levels may rise but perhaps levels drop elsewhere in the body -

apparently it's enzyme levels that matter. But I haven't got to grips with this

properly...

Margaret

> > > > > >

> > > > > > Joanne's post reminded me to contact Mrs again, as she was

> > > > spot on when Henry was a baby about what would stop Henry's seizures.

> > > > > > We did their programme for several years to try and get lead out

> > > > but I gave up because we weren't apparently getting a good result.

> > > > > > They use a standard set of supplements.

> > > > > >

> > > > > > If anyone has the time, could we speak, please? Mrs

> > > > mentioned manganese as being needed. We supplemented with their zinc

> > > > for years but (by their analysis) Henry remained chronically low in

> > > > zinc. I gave up.

> > > > > >

> > > > > > I am very unhappy about the Tegretol H is now on.

> > > > > >

> > > > > > Margaret

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > > No virus found in this message.

> > > > Checked by AVG - www.avg.com <http://www.avg.com>

> > > > Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date:

> > 09/13/11

> > > >

> > >

> >

> >

> >

> > No virus found in this message.

> > Checked by AVG - www.avg.com <http://www.avg.com>

> > Version: 10.0.1392 / Virus Database: 1520/3894 - Release Date: 09/13/11

> >

>