Re: EFAs and Seizure Control

[Guest guest]

,

I don't know that I can help you as far as giving advice. But I have

watched my children go through seizures and I know the scary, helpless

feelings. I have 6 children ranging in ages from 12 years-months. Of the

oldest 5, 4 have had febrile seizures. The baby is still young and hasn't

had any yet but it's too soon to rule out.

For a long time, I wanted to blame my son's special needs on the fact that

he had many many seizures. Due to sensory issues, he didn't recognize that

he was sick, and/or couldn't tell us when he was so we couldn't take

preventive measures like acetametaphin or ibuprofen. So, often the seizures

were a surprise as we didn't even know that he was sick. However, my 4th

son has never had any seizures and he has some special needs, similar to

but not as severe. Go figure!

As a parent, I wanted an explanation, someone/thing to blame. I haven't

figured it out and probably never will.

All I can offer is a shoulder to lean on and an ear to listen. And a

prayer, too.

Sheryl B

[ ] EFAs and Seizure Control

>

>

>

> Hi-

>

> My son has had a siezure disorder for several years, controlled

> very well, with his only recent seizures occuring when we tried to

> wean him off of his meds last summer. After the failure to remove

> the meds, we were able to get good seizure control on half of his

> previous dose. Until Thursday.

>

> On Thursday had a seizure at school. It broke my heart, and

> scared me half to death. Not that it was a serious seizure - it

> wasn't. Not that his teachers handled it poorly - they didn't.

> Just the knowledge that he has to deal with this on top of

> everything else he struggles with...soemtimes is more that I can

> bear. Yes, I had one of those weepy days this week, too.

>

> On to my question. At Christmas, we ran out of Prof EFA. We had

> been giving two Pro EFA and two ProEPA every day, and it worked

> nicely for him. When we ran out of Pro EFA, he seemed to experience

> a nice language surge - answering more 'wh' questions, longer

> utterances - even his teachers noticed it. OK, we though maybe this

> is the right balance FOR HIM. Until Thursday.

>

> By removing the ProEFA, we removed half of his DHA. And studies

> have shown that DHA is helpful in controlling complex partial

> seizures - the exact type my son has. So reduce the DHA....and the

> seizures begin again? Coincidence?

>

> He also has gained 10% of his body weight since the his last

> medication adjustment, so it is possible that he is just a bigger

> boy who needs more meds. But how do you know? If you have ever

> watched someone you love go through a seizure, it is not something

> you will easily take a " wait and see " approach with. Do we increase

> meds first, or put EFAs back in first? I have no idea. I think we

> will do both - but then never know which one helped.

>

> The other dilemma. What if for langauge and development, he didn't

> need the DHA, and therefore the improvement when we removed 1/2 of

> it. But then he does need it for seizure control? Aghhhh! Why

> can't this be simple?? Never mind the concerns I have over his

> seizure med (keppra) and his attention and cognition...

>

> Maybe none of you can help me on this and I am just ventineg. But

> any thoughts would be appreciated-

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

,

I do not know much about seizures, but I was interested in this part

of your post:

> By removing the ProEFA, we removed half of his DHA. And studies

> have shown that DHA is helpful in controlling complex partial

> seizures - the exact type my son has. So reduce the DHA....and

the

> seizures begin again? Coincidence?

Can you, please, give me more info on the studies you mention.

My daughter has seizure activity on her last EEG (in December), but

no seizures. She takes Frisium (Clobazam) for now and we are going

to the hospital tomorrow for further testing. She also takes one

capsule of ProEFA. She will be 3 years old in two weeks.

I wish the best.

Thank you.

Ivana, mom to Valentina

living in Belgrade, Serbia

http://www.babiesonline.com/babies/v/vanja/

[Guest guest]

Hi-

Here is a reference to the study that I mentioned regarding seizures

being helped by EFAs - specifically DHA. I don't have a link for

the entire article, however.

http://www.news-medical.net/?id=976

It was reported by Emory University in April 2004, I believe. Very

interesting. Of course, my neurologist thought it was ridiculous.

I felt vindicated that we had been giving him EFAs for several years

already for his apraxia, and now had some confirmation of it's neuro-

effectiveness. To bad I can't call him to discuss my concern that

it was actually the reduction in DHA that restarted his seizures -

he would give that no credence whatsoever. Though he is the only

pediatric neurologist in my town, I should look to see if any of the

other neurologists are more open-minded.

I do believe that one of the hardest choices to make is whether to

medicate a child for irregular EEG activity, without there being

actual seizures. Especially for a child one with develomental

delays. Some doctors believe that medicating them may help

development, others quote studies showing it does not. Tough, tough

stuff. For better or for worse, at least in our case we have actual

seizures and need to medicate.

>

>

> ,

> I do not know much about seizures, but I was interested in this

part

> of your post:

>

> > By removing the ProEFA, we removed half of his DHA. And studies

> > have shown that DHA is helpful in controlling complex partial

> > seizures - the exact type my son has. So reduce the DHA....and

> the

> > seizures begin again? Coincidence?

>

> Can you, please, give me more info on the studies you mention.

>

> My daughter has seizure activity on her last EEG (in December),

but

> no seizures. She takes Frisium (Clobazam) for now and we are going

> to the hospital tomorrow for further testing. She also takes one

> capsule of ProEFA. She will be 3 years old in two weeks.

>

> I wish the best.

> Thank you.

>

> Ivana, mom to Valentina

> living in Belgrade, Serbia

> http://www.babiesonline.com/babies/v/vanja/

[Guest guest]

Ivana

I don't think I can offer an answer to your specific question here,

but I wanted to respond as we have a similar situation with our

daughter, Ellie.

2 separate eegs showed significantly abnormal patterns in her left

occiptal lobe....looking back, we thought MAYBE we had seen staring

spells, but not sure. We certainly never had a visible seizure,

and the neurologist explained that the eeg didn't show actual

seizures, but a pattern that was abnormal and 'seizure-friendly.'

(Note: My husband has two sisters who had seizures and were on

medication). So, they proposed medication as a preventative measure

given all of Ellie's other issues (apraxia, hypotonia). After

multiple opinions, we put her on Tegretol and then switched a few

months ago to Trileptal. I think I've lost more sleep over this

than any of her other problems. On the good side, the side effects

are minimal, or at least we THINK so. On the bad side, sometimes I

think I'm nuts for putting her on a med whose common side effects

are fatigue, fogginess, and word retrieval issues! Like she doesn't

have enough problem with those things already!!!

We've ended up with a pediatric epileptologist and I would say I

like his approach best...he has us coming in every 4 months to

revisit the issue. If nothing else, this dx/medication has proven

helpful in securing even more services for Ellie in school....not

that it necessarily should, but that's how the system seems to work.

Take care

>

>

> ,

> I do not know much about seizures, but I was interested in this

part

> of your post:

>

> > By removing the ProEFA, we removed half of his DHA. And studies

> > have shown that DHA is helpful in controlling complex partial

> > seizures - the exact type my son has. So reduce the DHA....and

> the

> > seizures begin again? Coincidence?

>

> Can you, please, give me more info on the studies you mention.

>

> My daughter has seizure activity on her last EEG (in December),

but

> no seizures. She takes Frisium (Clobazam) for now and we are going

> to the hospital tomorrow for further testing. She also takes one

> capsule of ProEFA. She will be 3 years old in two weeks.

>

> I wish the best.

> Thank you.

>

> Ivana, mom to Valentina

> living in Belgrade, Serbia

> http://www.babiesonline.com/babies/v/vanja/

[Guest guest]

Hi -

I'm a newbie here - mostly just scan messages. I have a little guy, , who

just turned 3. He actually has epilepsy but lately I've been seriously thinking

he may have apraxia - thus, here I am.

At any rate, I've always heard to stay away from fish oils b/c the borage oil is

a seizure trigger for some kids. I've supplemented w/hemp oil b/c it doesn't

contain borage oil.

I've found studies on line that support this but the article you attached

doesn't reflect this.

Hmmmm.....

Thanks,

karenpeikert <jkpeik@...> wrote:

Hi-

Here is a reference to the study that I mentioned regarding seizures

being helped by EFAs - specifically DHA. I don't have a link for

the entire article, however.

http://www.news-medical.net/?id=976

It was reported by Emory University in April 2004, I believe. Very

interesting. Of course, my neurologist thought it was ridiculous.

I felt vindicated that we had been giving him EFAs for several years

already for his apraxia, and now had some confirmation of it's neuro-

effectiveness. To bad I can't call him to discuss my concern that

it was actually the reduction in DHA that restarted his seizures -

he would give that no credence whatsoever. Though he is the only

pediatric neurologist in my town, I should look to see if any of the

other neurologists are more open-minded.

I do believe that one of the hardest choices to make is whether to

medicate a child for irregular EEG activity, without there being

actual seizures. Especially for a child one with develomental

delays. Some doctors believe that medicating them may help

development, others quote studies showing it does not. Tough, tough

stuff. For better or for worse, at least in our case we have actual

seizures and need to medicate.

>

>

> ,

> I do not know much about seizures, but I was interested in this

part

> of your post:

>

> > By removing the ProEFA, we removed half of his DHA. And studies

> > have shown that DHA is helpful in controlling complex partial

> > seizures - the exact type my son has. So reduce the DHA....and

> the

> > seizures begin again? Coincidence?

>

> Can you, please, give me more info on the studies you mention.

>

> My daughter has seizure activity on her last EEG (in December),

but

> no seizures. She takes Frisium (Clobazam) for now and we are going

> to the hospital tomorrow for further testing. She also takes one

> capsule of ProEFA. She will be 3 years old in two weeks.

>

> I wish the best.

> Thank you.

>

> Ivana, mom to Valentina

> living in Belgrade, Serbia

> http://www.babiesonline.com/babies/v/vanja/

[Guest guest]

Hi ,

I too am new here. My daughter will be two in April and has

epilepsy-her seizures started the day after she was born. takes

Phenobarbital for her seizures. She has global motor planning issues,

and her SLP suspects she has apraxia as well, but says it is too early

to diagnose it officially. That being said, she does treat her as if

she does have apraxia and I am doing a lot of research on what I can do

to help. After reading about all the successes on this Web site, I

started her on the ProEFA about two weeks ago and saw a huge improvement

in her speech starting about 2 days after her first dose. She now says

" uh-oh " and " apple " and beginning to make " n " sounds and do more

imitating. Before starting her on the ProEFA, I consulted both her

pediatrician and her neurologist, who told me the fish oil would not

cause any harm. However, perhaps her neurologist does not know about

the borage oil being a potential seizure trigger.do you have any links

to the studies you refer to? was seizure-free for almost

eighteen months until December 27, 2004, when the seizures unexpectedly,

and most unwelcomingly, returned-we had thought that she had outgrown

them.and even put together a plan to wean her off the medication this

June. Although the ProEFA was started a few weeks after the seizure,

obviously, I am concerned about giving her anything that might trigger

them. Thanks!

Re: [ ] Re: EFAs and Seizure Control

Hi -

I'm a newbie here - mostly just scan messages. I have a little guy,

, who just turned 3. He actually has epilepsy but lately I've

been seriously thinking he may have apraxia - thus, here I am.

At any rate, I've always heard to stay away from fish oils b/c the

borage oil is a seizure trigger for some kids. I've supplemented w/hemp

oil b/c it doesn't contain borage oil.

I've found studies on line that support this but the article you

attached doesn't reflect this.

Hmmmm.....

Thanks,

karenpeikert <jkpeik@...> wrote:

Hi-

Here is a reference to the study that I mentioned regarding seizures

being helped by EFAs - specifically DHA. I don't have a link for

the entire article, however.

http://www.news-medical.net/?id=976

It was reported by Emory University in April 2004, I believe. Very

interesting. Of course, my neurologist thought it was ridiculous.

I felt vindicated that we had been giving him EFAs for several years

already for his apraxia, and now had some confirmation of it's neuro-

effectiveness. To bad I can't call him to discuss my concern that

it was actually the reduction in DHA that restarted his seizures -

he would give that no credence whatsoever. Though he is the only

pediatric neurologist in my town, I should look to see if any of the

other neurologists are more open-minded.

I do believe that one of the hardest choices to make is whether to

medicate a child for irregular EEG activity, without there being

actual seizures. Especially for a child one with develomental

delays. Some doctors believe that medicating them may help

development, others quote studies showing it does not. Tough, tough

stuff. For better or for worse, at least in our case we have actual

seizures and need to medicate.

>

>

> ,

> I do not know much about seizures, but I was interested in this

part

> of your post:

>

> > By removing the ProEFA, we removed half of his DHA. And studies

> > have shown that DHA is helpful in controlling complex partial

> > seizures - the exact type my son has. So reduce the DHA....and

> the

> > seizures begin again? Coincidence?

>

> Can you, please, give me more info on the studies you mention.

>

> My daughter has seizure activity on her last EEG (in December),

but

> no seizures. She takes Frisium (Clobazam) for now and we are going

> to the hospital tomorrow for further testing. She also takes one

> capsule of ProEFA. She will be 3 years old in two weeks.

>

> I wish the best.

> Thank you.

>

> Ivana, mom to Valentina

> living in Belgrade, Serbia

> http://www.babiesonline.com/babies/v/vanja/

[Guest guest]

Hi-

I think that it is evening primrose oil that is most commonly

arttributed to causing seizures. However, I'm not sure if any

studies support this. You see it stated all over the place, though.

My neuro thinks it is " quaint " that we are using EFAs, and that we

put any stock in their seizure reducing capabilities. We are now

considering bringing our son to Emory University to meet with the

doc who did the most recent study, just to pick his brain about

this. I'm also intrigued by some studies that seem to suggest re-

mylenization of the brain after taking EFAs, and would like to talk

to someone who actually researches and believes in this! In the

mean time, we are actively using DHA to augment our sons seizure med

(keppra).

P.S. My husband is an MD, so you KNOW he does not take any of this

lightly!

>

> Hi ,

>

> I too am new here. My daughter will be two in April and

has

> epilepsy-her seizures started the day after she was born.

takes

> Phenobarbital for her seizures. She has global motor planning

issues,

> and her SLP suspects she has apraxia as well, but says it is too

early

> to diagnose it officially. That being said, she does treat her as

if

> she does have apraxia and I am doing a lot of research on what I

can do

> to help. After reading about all the successes on this Web site, I

> started her on the ProEFA about two weeks ago and saw a huge

improvement

> in her speech starting about 2 days after her first dose. She now

says

> " uh-oh " and " apple " and beginning to make " n " sounds and do more

> imitating. Before starting her on the ProEFA, I consulted both her

> pediatrician and her neurologist, who told me the fish oil would

not

> cause any harm. However, perhaps her neurologist does not know

about

> the borage oil being a potential seizure trigger.do you have any

links

> to the studies you refer to? was seizure-free for almost

> eighteen months until December 27, 2004, when the seizures

unexpectedly,

> and most unwelcomingly, returned-we had thought that she had

outgrown

> them.and even put together a plan to wean her off the medication

this

> June. Although the ProEFA was started a few weeks after the

seizure,

> obviously, I am concerned about giving her anything that might

trigger

> them. Thanks!

>

>

[Guest guest]

Hi -

Just do a random search - " borage oil and seizures " . A ton of articles pop up.

I've attached just a couple but believe me, there are plenty. Apparently, GLA

is known to reduce seizure threshold. In addition, this last article suggests

that AED's NOT be used in combination (and specifically, phenobarbitol) w/borage

oil.

Articles:

gettingwell.com/drug_info/nmdrugprofiles/nutsupdrugs/bor_0039.shtml - 15k -

Cached - More from this site

www.sbrc.umanitoba.ca/ncarm/borageoil.htm - 17k - Cached - More from this site

It's such a dilemma - I've read such amazing benefits from EFA's - I'd love to

try it but just am scared to introduce a potential seizure trigger.

My son has had seizures since he was 4 months old - he's been on the ketogenic

diet for 1.5 years. We've never had complete control but have been able to get

him off his AED's and have seen drastic improvement in seizure control. We are

currently weaning him from the diet.

Good luck and happy searching.

Carpenter <stephcarpenter@...> wrote:

Hi ,

I too am new here. My daughter will be two in April and has

epilepsy-her seizures started the day after she was born. takes

Phenobarbital for her seizures. She has global motor planning issues,

and her SLP suspects she has apraxia as well, but says it is too early

to diagnose it officially. That being said, she does treat her as if

she does have apraxia and I am doing a lot of research on what I can do

to help. After reading about all the successes on this Web site, I

started her on the ProEFA about two weeks ago and saw a huge improvement

in her speech starting about 2 days after her first dose. She now says

" uh-oh " and " apple " and beginning to make " n " sounds and do more

imitating. Before starting her on the ProEFA, I consulted both her

pediatrician and her neurologist, who told me the fish oil would not

cause any harm. However, perhaps her neurologist does not know about

the borage oil being a potential seizure trigger.do you have any links

to the studies you refer to? was seizure-free for almost

eighteen months until December 27, 2004, when the seizures unexpectedly,

and most unwelcomingly, returned-we had thought that she had outgrown

them.and even put together a plan to wean her off the medication this

June. Although the ProEFA was started a few weeks after the seizure,

obviously, I am concerned about giving her anything that might trigger

them. Thanks!

[Guest guest]

Hi !

And...search the archives -this is -what do you call it? an urban

legend. Just ask Dr. AJ about borage or primrose oil-or

read her response to this below. Also Dr. Chez a pediatric

neurologist from Chicago who specializes in children with severe

seizure disorders like LKS approve ProEFA with borage oil (many here

in this group have children with seizures on ProEFA, some patients

of Dr. Chez -and now seizure free). So...ask your child's neuroMD.

They don't go by gossip -just facts. More below:

~~~~~~~~~start of archive

From: " Toni W. " <mommybizz@...>

Date: Wed Mar 31, 2004 5:37 pm

Subject: Re: [ ] regarding seizures and EFAs

(archive)

My daughter has seizure disorder so if there was any even slight

chance of fish

oil causing seizures, her neurologist wouldnt have cleared it for

her to take

it. She's been on ProEFA since November and we have seen no increase

of

seizures at all. As a matter of fact, even with her growing like a

bad weed

(which uaually throws her into seizures since her meds arent' strong

enough any

more) we have seen no seizures at all. Her last EEG was seizure

free. She

still has a little non-seizure abnormal activity on there, but even

that changed

from a high level type of activity to a low level activity.

The only natural supplement I have been told not to give her under

any

circumstances is Ginsing.

Toni

From: " kiddietalk " <kiddietalk@...>

Date: Wed Mar 31, 2004 1:49 pm

Subject: regarding seizures and EFAs (archive)

" ...Re your enquiry - I have to say that I have become extremely

bored with this issue, although I can fully understand people's

concerns.

First - let me say that re fish oil, this story seems quite

ridiculous to me. What appears to have happened is that a myth that

started with evening primrose now appears to have spread - as myths

and rumours do - to fish oil.

I know of no evidence whatsoever that could possibily link the

consumption of fish oil (omega-3 fatty acids) to an increased risk of

epilepsy. In fact, one would expect exactly the opposite!

Re evening primrose oil (omega-6 fatty acids), again there appears

to be no reliable evidence of any link to epilepsy - although there

are plenty of anecdotes and rumours, fuelled by the fact that some

manufacturers have chosen to put a warning on their products to this

effect.

This story arose from some very early trials of the use of EPO in

schizophrenia. The drugs used to treat schizophrenia have numerous

side-effects, one of which is to reduce the threshold for epileptic

fits quite substantially. Thus when a few schizophrenia patients

suffered fits while taking this medication (and evening primrose

oil), it was duly noted down. This was interpreted by some as a

possible negative effect of EPO - rather than the more obvious

explanation that the neuroleptic drugs were to blame.

Since then, no evidence has been forthcoming to suggest that EPO

carries this risk - in fact the balance of evidence appears to

suggest the opposite.

However, like all 'scare stories' - this one does not seem to go

away... "

Dr A J

University Lab of Physiology

Parks Road

Oxford OX1 3PT

http://lists.becta.org.uk/pipermail/senco-forum/2002-

January/019077.html

Full email below:

From: " kiddietalk " <kiddietalk@...>

Date: Sun Dec 7, 2003 1:14 pm

Subject: Re: Question about Pro EFA vs. Omega 3 Fish Oil/

Hi Laurel!

If you investigate the rumor you will find you can't dig too deep.

This is because it's a rumor based in nothing more than myth. I'm

not saying that high dosages of GLA would be good for those children

prone to seizures -I wouldn't know -most of us only use small

amounts of GLA in the EFA formulas we use. The dosage we use as a

group is used by seizure prone children -and not only is it not

reported to create seizures -it's been known to help children remain

seizure free for some reason. Those here who have children that are

patients of pediatric neurologist Dr. Chez have their

seizure prone children on a mixture of ProEFA (Omega 3/Omega 6) and

carn-aware.

I can tell you that the parents I spoke to recommended the following

to me to pass on to others in their situation. Start with a drop of

oil supplementation and keep the emergency precaution medication

near just in case. Do this for a week and slowly increase to two

drops -three drops -1/2 a capsule -and then to a full capsule etc.

Run all this by your child's MD of course as well. And I encourage

you to search the web and the archives here and at other groups. Most

of what you read about seizures and Omega 6 again is all

regurgitated information based on the same rumor. Rumor's travel

quick online so investigate.

Here is an archive on this:

" Back then -there was a huge rumor -unfounded as of yet in our

group, or really anywhere -but one that spread like crazy -that the

Omega 6 in O3/O6 formulas can create seizures. Our group and the

professionals working with us were nervous about the chance of

seizures. I was yelled at by a few of our members who said that I

could ruin the group due to my belief in the oils -and what

if " something went wrong " with just one child? Back then and now -I

am always open to looking at any danger and as yet under

investigation have not found any warning to be founded in the

formula/dosage we found to work. Because as parents we wanted the

formula that worked (ProEFA) I worked out where we would distribute

the oils to our group through the company started by me while on

bedrest to primarily help the blind get shopping done -Shop -In

Service, instead of distributing through the CHERAB Foundation as a

fund raiser as I originally wanted. And that's the history.

http://www.cherab.org/information/historyEFA.html

Today we know that GLA may cause seizures in children prone to

seizures, yet as said to me by one of the parents of a seizure prone

child " water may cause seizures in children prone to seizures "

however the small dosage of GLA together with the much higher dosage

of DHA and EPA most of us use is reported to 'lower' and even stop

seizures in seizure prone children. (As we just talked about the

other day)

So again -perhaps it's all in the right formula? And as always -

it's not following -but investigating to get down to the facts.

These are our children -and believe me -nobody cares

about our children as much as we do as parents. So I guess this

message is to be warned about warnings -and like me -ask where they

come from -and see if they are coming from reputable sources.

To all of you with seizure prone children doing great today on the

oil therapy -what if you never knew?!! "

About the primrose oil -what your MD said is what Dr. Marilyn Agin

says -(and it's in the archives too):

" Re: seizures, I think there is probably a very small risk and a lot

to gain in a seizure prone child. I think if we suggest starting

with a low dose and building up slowing there shouldn't be a

problem. There is always the possibility of drug interactions with

the EFAs but that would be more so in the adult population. We

always need to say check w/ your doctor, even though we may know

more than the practitioner!

I summary, we should say the EFAs appear to be safe and are unlikely

to cause seizures in seizure prone children, but we typically advise

parents to check with their pediatricians in these situations. "

And here is an answer about this from Dr. who was one of

the presenters at The First Apraxia Conference initiated and hosted

by CHERAB

Re: FW: Epilepsy / fish oil?

Dear Jane

So sorry for the delay in getting back to you.

Re your enquiry - I have to say that I have become extremely bored

with this issue, although I can fully understand people's concerns.

First - let me say that re fish oil, this story seems quite

ridiculous to me. What appears to have happened is that a myth that

started with evening primrose now appears to have spread - as myths

and rumours do - to fish oil.

I know of no evidence whatsoever that could possibily link the

consumption of fish oil (omega-3 fatty acids) to an increased risk of

epilepsy. In fact, one would expect exactly the opposite!

Re evening primrose oil (omega-6 fatty acids), again there appears

to be no reliable evidence of any link to epilepsy - although there

are plenty of anecdotes and rumours, fuelled by the fact that some

manufacturers have chosen to put a warning on their products to this

effect.

This story arose from some very early trials of the use of EPO in

schizophrenia. The drugs used to treat schizophrenia have numerous

side-effects, one of which is to reduce the threshold for epileptic

fits quite substantially. Thus when a few schizophrenia patients

suffered fits while taking this medication (and evening primrose

oil), it was duly noted down. This was interpreted by some as a

possible negative effect of EPO - rather than the more obvious

explanation that the neuroleptic drugs were to blame.

Since then, no evidence has been forthcoming to suggest that EPO

carries this risk - in fact the balance of evidence appears to

suggest the opposite.

However, like all 'scare stories' - this one does not seem to go

away. Another factor is that many neurodevelopmental disorders are

associated with an increase risk of epilepsy. Fatty acid supplements

(both evening primrose and fish oil) are increasingly being used in

the management of these conditions. Any occurrence of epileptic fits

(which are not at all uncommon in these groups) then seems to get

anecdotally attributed to the fatty acid supplements (because

someone has heard...... and on goes the myth).

As I say - I can completely understand the concern that this issue

generates, but there really appears to be no firm foundation at all

for the ongoing rumours. And as I mentioned earlier - re omega-3

fatty acids in fish oil the suggestion seems particularly ludicrous -

as if anything, these oils have a 'calming' effect on brain

activity.

As you probably know - the fatty acid treatment we use in our studies

involves predominantly omega-3 (from a high EPA marine oil) but some

omega-6 fatty acids (from extra-virgin evening primrose oil), as

provided by Equazen's 'eye q' supplement. I have no concerns

whatsover that this carries any risk of promoting seizure activity -

and would in fact expect the opposite.

A recent anecdote I can add concerns the father of a child with ADHD

and epilepsy - controlled as well as possible by anti-convulsant

medication, but with major fits that had previously occurred at

least once a month. The father had noted that since starting

on 'eye q', not only had there been a marked improvement in the

child's behaviour and mood, but that no fits whatsoever had occurred

over four months. He was quite sensibly not expecting that this

would necessarily continue, but was certainly rather pleased for the

time being.

The real issue is that anecdotes (no matter how many) can provide no

firm basis whatsoever for demonstrating any reliable associations.

I do hope this helps.

Best wishes

********************************************************************

Dr A J

University Lab of Physiology

Parks Road

Oxford OX1 3PT

http://lists.becta.org.uk/pipermail/senco-forum/2002-

January/019077.html

http://www.cherab.org/news/scientific.html

Loose stools a concern? Typically even if that happens -it's mild

and only for a few days -and then the surge. Too much fish oil? If

you ever gave your child pizza for lunch and blotted the oil away

with a paper towel -he or she would consume more pizza oil in a

slice of pizza then what we give most of our children when we give

them fish oil. So next time you or anyone is " worried " about too

much fish oil (shudder/gasp -and then smack -get real!) think pizza,

french fry, and doughnut oil. Hey does Krispy Kreme sell their oil

on the side -or do they include that for free? Is that why all those

people stand in line waiting for those doughnuts? Why is there no

rumors about too much " Krispy Kreme " oil -the " bad " fats?! Why EFAs -

the " good " fats?!! (good guys finish last to you guys or what? I'll

stick with the good guys)

You can't purchase ProEFA at a store since that is the professional

(cheaper) line than the commercial line. You could purchase the

commercial (more expensive) line called Complete Omega Ultimate

Omega with Borage Oil at the store, or purchase Efalex or EyeQ...or

make the formula yourself. Here is an archive on this:

> It doesn't matter where you purchase ProEFA (or even if you

purchase

> the brand name or make the formula yourself) since all the most

> recent bottles of Nordic ProEFA come now with expiration dates

> printed permanently right on the labels. No longer are the

> expiration dates little stick on labels which 'could' be changed.

>

> All the reputable most used resources can be found at

> http://www.cherab.org/information/dietaryeffects/efabasics.html or

> http://www.speech-express.com/alternative-therapy/efa-sources.html

About dosage most of us found best? another archive:

" Dosage of one capsule a day ProEFA that at the lowest dosage appears

to be the best -

148 mg EPA

99 mg DHA

40 mg GLA

Here is what many of us have found to be the best plan

anecdotally...start with the basic formula, one ProEFA a day, we

saw surges in a few days to three weeks which continued for months -

we then reached a plateau after around 6 months. At this point we

raised the dosage to two capsules of ProEFA a day and once again had

those surges which lasted again for months. When we reached the

next plateau after around a year, instead of going to three a day -

we squeezed 1/2 to one capsule of ProEPA into the 2 capsules of

ProEFA and for almost all of us that try -that created another surge.

Over time -you may raise the dosage up higher -and you may slightly

change the formula to raise the Omega 3 over the Omega 6 ratio -but

you need to know your own child, keep track of his progress through

both your own observations and that of the professionals -with the

advice of your child's doctor -to know what is best for him/her. "

And one more archive that I hope answers more questions:

I don't know exactly why your child is moving her mouth in unusual

positions, or groping -however to me any changes outside the norm

when you start your child on the EFAs is a great sign that something

is clicking and that the surge may be soon approaching. (Please let

us know when you see the surge in speech in the next week or two!)

Since I receive lots of calls about this -I wanted to list the most

common changes in an apraxic or other speech disordered child on

EFAs from what I've read and heard and seen.

1. Increase in babbling or attempts at sounds.

2. Increase in imitation.

Changes also can be looked for in (what you see as positive or

negative)

sleep

attention

appetite

focus

behavior

stools

Next will come a breakthrough of something you were probably working

on for a bit -so you will be excited but will think " Well -I don't

want to get my hopes up we were working on that for awhile now -

maybe it's just a coincidence " However after the second or third

surge in a short period of time -and then another - you are pretty

sure things are different and it's at this point the professionals

and the rest of the family and your friends are noticing it too -

maybe about two to three weeks now.

OK -the next stage is pure elation and hope -you see the light and

no longer feel as desperate and want to share this new information

with everyone and anyone. As the months go by and your child

continues to progress at a much more rapid rate -you may even start

to doubt the original diagnosis -especially if you started EFA

supplementation at two -and perhaps the SLP that diagnosed the

apraxia who also was at first excited is starting to second guess if

the original diagnosis was correct as well. Unless you have to stop

the ProEFA (or other Essential Fatty Acid) and literally have the

chance to see the regression of acquired speech and language skills,

attempts, and changes in behavior like we did with Tanner (and/or

have a chance to again witness the second surge when your child is

put back on the EFAs) -that doubt will probably remain somewhere in

your mind and in others around your child. So the " I told you that

he would start talking when he was ready " comments should be

expected of course.

Up to this point is understandable to me -it's the point after this

that is confusing to me, and perhaps not the best stage for our

children and for raising awareness or having research done to find

out what is happening to our children and why. Perhaps because we

have truly hit a paradigm shift...

As Dr. Agin states the EFAs actually appear to be in some

ways " curing " the apraxic child -even those diagnosed with severe

oral and verbal apraxia, hypotonia, sensory and behavioral issues.

Especially those started at younger ages.

The child on ProEFA or some other EFA formula's like it no longer

fits the criteria of the classic definition of apraxia -and yet

doesn't fit the classic perception of what a late talker is either...

Some of the parents become more focused on other everyday activities

with their child and start to drift away from the support sources

(for those who ask why there appears to be trouble with support

groups in the US and outside the US now a days) I found it amazing

that at the New Jersey Speech Hearing Association Conference that a

higher than average number of the parents that attended had children

that did not respond to ProEFA. Basically only parents that were

still desperate for help for their child, or new parents showed up.

Problem with this attitude is that unless your child is really up to

speed on all aspects of speech and language, the support sources

that helped in the beginning will still benefit your child today.

ProEFA alone is not the only answer and until we know how and why it

works (or why in a handful of children it doesn't) we can't improve

on it "

And yes -feel free to pass on if you want.

=====