Re: Really want ALL of you expert moms/docs/etc to weigh in on this one

[Guest guest]

Well, this may put me on the crazy lady list but I will tell you our

story and see what applies. We had staring siezures and one or two

petit mals. Eventually got all the testing and saw the need for GFCF

intervention, moved to a probiotic and TLP. Did trials of fish oil,

very little E other than in diet.

In the past year we saw in both kids a decrease in truncal tone,

increased on E. Still, the kids are light so I did not go overboard

with the E. During this time my son lost 6 pounds. He has since

regained. This was a big deal as it was 20% of his bodyweight.

Chiropractic helped him a lot. Hair test revealed top of the charts

arsenic. I am told that messes with adrenal issues and chiro helps.

Returning with the info to metabolic neuro, GI, and hematology. He did

get rubella and chickepox during this time and we noted significant

gains then as well.

Our stories are different but if any of this is of value to you, here

you go. I hope you find your answers.

[Guest guest]

--Depakote was a topic not so long ago. I don't remember the gist of it

but perhaps can pull up the archives.

[ ] Really want ALL of you expert moms/docs/etc to

weigh in on this one

Hi all,

I have studied up on the fish oil supplmentation for about a year and finally

decided to start it in July 2008. It's not quite been 3 months, but we have seen

a surge in verbalizations. However, on the flip side---we have seen a decrease

in our son's trunk tone/balance/visual attentiveness. He is tripping and falling

much more, not sitting as upright and needing a special chair in preschool, etc.

(He turns 4 in November)

Anyway, my son also has a seizure disorder. Now, I had read that the borage

oil in the Omegas can lower the seizure threshold, so that is always in the back

of my mind. (I heard from some sources that it is an internet rumor/wives tail

just has just stuck because it's been around for so long, blah blah)

Our son also switched from Zonegran (which didn't work) to Depakote (which

appears to be working) in June....just before starting fish oils. We have also

been on phenobarbital this whole time.

Seizure control is better and not better. What I mean is that we have not had

the type of seizures he had before (big grand mal, Diastat, ride in ambulance to

ER, etc) since June 6th. That is the longest we have gone in two years. So, my

feelings is Depakote is working. However, he has had occasional " little "

seizures (10-15 seconds) a few mornings this past month. That, combined with

this new reduced stability, makes me worry one of three possibilities

1) He is having the reduced stability because he is fairly high doses of the

seizure drugs (possible side effects)

2) He is having reduced stability because he is seizing more at night and I am

not realizing it?

Soooo, the doctor ordered an ambulatory EEG in a couple of weeks to see what

is going on .

So here's my fear....what if the fish oils are triggering just enough to bring

through a seizure that depakote might otherwise control? Should I stop the fish

oils now and see if that seizure activity is not on the EEG? Of course, then if

there is none---then I will worry that it never was causing anything and I took

him off it unecessarily, when we did see speech benefit.

OR, do I leave him on it and just see what shows up on the EEG? What I risk

there is the doc wanting to up his meds MORE and I have zombie kid.

suggestions from anyone? Anybody experience anything like this?

Thanks,

[Guest guest]

, Let me start by saying I'm no expert on seizures, and seizure

medications.  This is a new twist in the mix and you really need a doctor who is

a metabolic neurologist, and works with seizures/diet medication as needed to

help you out. I think most neurologists are not trained in nutrition and are

hesitant to make any recommendations or may even advise against it--they just

don't know. But there are some that do and they can better assess what your

child stands to benefit from. 

I can only tell you that if it were my child in this situation I would seek out

such a neurologist who specializes  in metabolic disorders, epilepsy and treats

through diet and supplements etc. and take it from there. Liz mentioned her son

was being seen by such a specialist in NJ. I'm sure there aren't many, but this

is what you need as seizures are not to be played with and yet your child could

benefit so much from supplements and dietary interventions that meet his health

needs. So I do think it's worth pursuing, just under the careful watch of a good

specialist.  Check out the doctors Dr. recommends in the

presentation notes that were passed around and maybe you can contact them to

give you a recommendation where you are. Good luck!

Elena- mom to Ziana, age 4, apraxic but otherwise a healthy happy child and

improving every day now that appropriate PROMPT therapy, diet and supplements

have all been implemented.

From: Roark <mmroark2@...>

Subject: [ ] Really want ALL of you expert moms/docs/etc to

weigh in on this one

Date: Friday, September 26, 2008, 2:51 PM

Hi all,

I have studied up on the fish oil supplmentation for about a year and finally

decided to start it in July 2008. It's not quite been 3 months, but we have

seen a surge in verbalizations. However, on the flip side---we have seen a

decrease in our son's trunk tone/balance/visual attentiveness. He is

tripping and falling much more, not sitting as upright and needing a special

chair in preschool, etc. (He turns 4 in November)

 

Anyway, my son also has a seizure disorder. Now, I had read that the borage oil

in the Omegas can lower the seizure threshold, so that is always in the back of

my mind. (I heard from some sources that it is an internet rumor/wives tail just

has just stuck because it's been around for so long, blah blah)

Our son also switched from Zonegran (which didn't work) to Depakote (which

appears to be working) in June....just before starting fish oils. We have also

been on phenobarbital this whole time.

 

Seizure control is better and not better. What I mean is that we have not had

the type of seizures he had before (big grand mal, Diastat, ride in ambulance to

ER, etc) since June 6th. That is the longest we have gone in two years. So, my

feelings is Depakote is working. However, he has had occasional

" little " seizures (10-15 seconds) a few mornings this past month.

That, combined with this new reduced stability, makes me worry one of three

possibilities

1) He is having the reduced stability because he is fairly high doses of the

seizure drugs (possible side effects) 

2) He is having reduced stability because he is seizing more at night and I am

not realizing it?

 

Soooo, the doctor ordered an ambulatory EEG in a couple of weeks to see what

is going on .

 

So here's my fear....what if the fish oils are triggering just enough to

bring through a seizure that depakote might otherwise control?  Should I stop

the fish oils now and see if that seizure activity is not on the EEG?  Of

course, then if there is none---then I will worry that it never was causing

anything and I took him off it unecessarily, when we did see speech benefit.

 

OR, do I leave him on it and just see what shows up on the EEG? What I risk

there is the doc wanting to up his meds MORE and I have zombie kid.

 

suggestions from anyone? Anybody experience anything like this?

 

Thanks,

[Guest guest]

This is just my personal experience. My son was on antiseizure

medication (leviteracetam) for jerks/spasms. He didnt get any

jerks/spasms after we started the medication. Last year (he was 3 yr

then), I gave him childrens DHA for couple of months and then

switched to ProEFA. In the second week after starting ProEFA, I saw

an improvement in speech. But in the 3rd week, he started to get

jerks, gradually increasing in frequency. I then read about

borageoil/GLA decreasing the seizure threshold etc. Out of panic, I

stopped fish oil. Jerks disappeared after 12 days of stopping the

fish oil.

In the followup neurologist visit, the doc increase the dose of

seizure medication and suggested that I lower the dose of fish oil.

I did it for about 6 months, didnt see any jerks nor any major

improvement in speech. The last EEG few months back was normal and

the doc discontinued the antiseizure medication. I just discontinued

fish oil as I was worried that he might get jerks again.

-Indu

>

> Hi all,

> I have studied up on the fish oil supplmentation for about a year

and finally decided to start it in July 2008. It's not quite been 3

months, but we have seen a surge in verbalizations. However, on the

flip side---we have seen a decrease in our son's trunk

tone/balance/visual attentiveness. He is tripping and falling much

more, not sitting as upright and needing a special chair in

preschool, etc. (He turns 4 in November)

>  

> Anyway, my son also has a seizure disorder. Now, I had read that

the borage oil in the Omegas can lower the seizure threshold, so

that is always in the back of my mind. (I heard from some sources

that it is an internet rumor/wives tail just has just stuck because

it's been around for so long, blah blah)

> Our son also switched from Zonegran (which didn't work) to

Depakote (which appears to be working) in June....just before

starting fish oils. We have also been on phenobarbital this whole

time.

>  

> Seizure control is better and not better. What I mean is that we

have not had the type of seizures he had before (big grand mal,

Diastat, ride in ambulance to ER, etc) since June 6th. That is the

longest we have gone in two years. So, my feelings is Depakote is

working. However, he has had occasional " little " seizures (10-15

seconds) a few mornings this past month. That, combined with this

new reduced stability, makes me worry one of three possibilities

> 1) He is having the reduced stability because he is fairly high

doses of the seizure drugs (possible side effects) 

> 2) He is having reduced stability because he is seizing more at

night and I am not realizing it?

>  

> Soooo, the doctor ordered an ambulatory EEG in a couple of

weeks to see what is going on .

>  

> So here's my fear....what if the fish oils are triggering just

enough to bring through a seizure that depakote might otherwise

control?  Should I stop the fish oils now and see if that seizure

activity is not on the EEG?  Of course, then if there is none---then

I will worry that it never was causing anything and I took him off

it unecessarily, when we did see speech benefit.

>  

> OR, do I leave him on it and just see what shows up on the EEG?

What I risk there is the doc wanting to up his meds MORE and I have

zombie kid.

>  

> suggestions from anyone? Anybody experience anything like this?

>  

> Thanks,

>

>

>

>

>

>

>

[Guest guest]

I have the archive on Omega 3/6 oils below and yes it's

pointed out by various reputable sources that the fears of seizures

from the oils are based on myths.

The main thing is to get the opinion from your child's

MD and seek out second opinions as well. I know how scary it is to

watch your child regress and pray all goes well with the EEG and you

get the answers you need to help him get through this.

I know from your email to me that your child is on one ProEFA capsule

a day (or Omega 369 same thing) To again be clear -one capsule of

ProEFA is about the dosage the FDA approved for infant formula -so

very conservative. If you blotted the oil off the pizza at dinner

you'd probably have much more of that for sure!

Any sign of regression should be taken serious of course and reported

to your child's doctor ASAP... but to again make it clear -lost skills " from "

fish oils is not one that has ever been reported before

nor one I know of as associated with it. The oils are the Rodney

Dangerfield of supplements- if there are surges while taking the fish

oil with any other supplement -the other supplement is credited for

the surge... and if there are regressions while taking it the fish

oils are the first to be under suspicion. To have a no respect fish

oil named after him -too bad it didn't make it in the video.

http://www.youtube.com/watch?v=dSoykHwQBe0

And if one capsule of ProEFA in theory did create a regression -

eating a tuna fish sandwich should create a regression too. The

other thing that doesn't make sense is that your child is responding

in his speech development in the past few months since the addition

of the one capsule which is a great thing. So just for a moment

let's look outside the fish oils.

You don't say but how long has your child been on each of the

medications he is on?

Without knowing how long he has been on the medications (other than

he's just been switched to Depakote since June of 2008?) I looked at

the other medications to check for what can be creating the weakness

or motor planning issues. I also checked to see if anything was

linked to myopathy as I've recently learned that some medications or

poisons are linked to this. I know that when it comes to seizures

that you have to weigh pros and cons of medications of course but I

did read a few things you may want to run by your child's doctor and

speaking of myopathy

" Phenobarbital may cause muscle destruction/damage. "

http://doublecheckmd.com/EffectsDetail.do;jsessionid=DFC53DD96CC8983965C8C74B762\

C97F9?dname=phenobarbital & sid=12244 & eid=1690

http://journals.elsevierhealth.com/periodicals/ymai/medline/related/MDLN.6424397

I found mixed side effects all over for Depakote

" divalproex sodium " (Depakote)

http://www.epilepsynl.com/drugs/divalproexsodium.html

But here it states the side effects can be Dizziness -- up to 25

percent and double or blurred vision.

http://bipolar-disorder.emedtv.com/depakote/depakote-side-effects.html

Here's the archive (again) as promised on the oils

Re: Okay, I am begging...

is working again! Here's some archives (of archives of

archives) on seizures and O3/O6:

~~~~~~~~~~~~~~~~~

Re: EFAs and Seizure Control

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

=====