Re: ProEFA and seizure disorder

[Guest guest]

Pretty sure the Omega 6 is a no-no for seizures. I'd talk to your

neurologist or reg doc. I know some people use just an Omega 3

supplement bc of this...

Good luck!

Marina

> Hi all. I am new here and just a had question for anyone with a

> similiar experience. I would like to start my daughter on ProEFA.

I

> am curious to know if anybody has a child with a seizure disorder

and

> is using proEFA. > Amber

[Guest guest]

Hi Marina and all!

Marina, yes this is a common belief shared online -however in running

a local support group which has a large membership -and also in getting to

read so many messages over the years from running this list, I think

this belief may need to be tweaked. It's not that you are wrong,

it's that there is another side that most people don't seem to know

about, and in fact the common belief may not be correct even most of

the time.

I don't know if all of you have a local support group in your area -

but to answer this question, you may also check with parents you know

in the local group. I personally know many parents who have children

that are prone to seizures on Omega 3 and Omega 6 formulas and doing

great. I also know through our group online a handful who have found

that the Omega 6 -the GLA (borage or primrose oil) had caused

seizures. We have posted this before that those with children prone

to seizures to check with your child's doctor. Donna (her posts

below) has a child with Landau-Kleffner Syndrome, (LKS), also called

acquired epileptiform aphasia, is a rare, childhood neurological

disorder.

According to her son's website at

http://www.geocities.com/HotSprings/1000/kids/haydena.htm his

frequency of seizures is " 100's at night, a few during the day. "

which I would believe is pretty high. I also have spoken and emailed

with parents who started supplementation with one or two drops with

seizure medication in hand just in case and gradually increased the

dosage without any seizures.

I do think it's wise to use caution if your child is prone to

seizures -again there are no cases of children not prone to seizures

having seizures on any EFA formula with or without Omega 6 in it -

children prone to seizures from what I hear none of them have

seizures on pure Omega 3 formula's like pure fish oil, or cod liver

oil or flax seed oil (again for the most part -you can never say

never, especially when talking about children that are prone to

seizures) And again -I know personally quite a few parents with

seizure prone children who are making amazing strides on ProEFA,

which is an Omega 3 and Omega 6 formula (with borage oil)

As developmental pediatrician Marilyn Agin MD said in a recent post -

" 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. ...In 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. "

Donna -I'm curious -what are your thoughts on this question? (and by

the way your photo page of your adorable little ones is amazing and I

too wish you could come to my house to help me get my kid's photos

done like that -you are so creative!!!)

From: " Donna Swisher " <markswis@...>

Date: Fri May 3, 2002 11:53 pm

Subject: Re: diagnosis?? -- long

Hi, your story sounds so chilling familiar, I don't want to alarm

you, but please, please go to my son's page at the Epilepsy in Young

Childrens web site and look for the childs name of Hayden .

Read our story and please let me know if this sounds like your son. I

wish someone would have done the same for me when Hayden was only 2,

we didn't get a correct dx till he was almost 3. Your losing precious

time.

http://www.geocities.com/HotSprings/1000/kids/haydena.htm

Hugs

Mark & Donna/Indiana

Carl 20, Hayden (LKS), ,Trevor 3.11,

Baby Sister-Madison b:01-01-02

Scrapbook Addict, to visit my album,

go to: http://www.picturetrail.com/tripletmom98/417049

" The mother of a disabled child will never take for granted a " spoken

word " . She will never consider a " step " ordinary. When her child

says " momma " for the first time, she will be present at a miracle and

know it " Erma Bombeck

From: " Donna Swisher " <markswis@...>

Date: Tue May 7, 2002 3:00 pm

Subject: Re: [ ] about ProEFA?

From one Donna to another and from one mommy to another, start him

right away on EFA, I wish, oh how I wish I had known about them a

year ago. Our son does have a seizure disorder that effects his

receptive and expressive speech, and was dx'd a year ago and just 4

weeks ago, on April 1st. I started him on Nordic Naturals Pro-EFA and

we are seeing ton's of spontaneous speech. Before he would only talk

if prompted and we are also seeing tons more new words, like singing

along to videos and songs we have never heard him say before. We do

give 2 of them, started off with just 1 for 2 weeks. He weighs 47lbs.

Hugs and goodluck

Mark & Donna/Indiana

Carl 20, Hayden (LKS), ,Trevor 3.11,

Baby Sister-Madison b:01-01-02

Scrapbook Addict, to visit my album,

go to: http://www.picturetrail.com/tripletmom98/417049

" The mother of a disabled child will never take for granted a " spoken

word " . She will never consider a " step " ordinary. When her child

says " momma " for the first time, she will be present at a miracle and

know it " Erma Bombeck

=====

[Guest guest]

Our son has been on ProEfa since April 1st and we just had a first time ever

clean EEG a week and a half ago. He has seizure disorder. I show the ProEFA to

his neuro this time and he said it was fine to give him.

Mark & Donna/Indiana

Carl 20, Hayden (LKS), ,Trevor 3.11,

Baby Sister-Madison 4months, New Years Day Baby

Hayden's Story : http://www.geocities.com/HotSprings/1000/kids/haydena.htm

Scrapbook Addict, to visit my album,

go to: http://www.picturetrail.com/tripletmom98/417049

" The mother of a disabled child will never take for granted a " spoken word " .

She will never consider a " step " ordinary. When her child says " momma " for the

first time,

she will be present at a miracle and know it " Erma Bombeck

[ ] ProEFA and seizure disorder

Hi all. I am new here and just a had question for anyone with a

similiar experience. I would like to start my daughter on ProEFA. I

am curious to know if anybody has a child with a seizure disorder and

is using proEFA. Has anyone heard any discrepancy with the two? A

little background of Sammy, in a nutshell, is that she was born full

term and SGA. 5# 4oz's and 16 1/2 " . She has been in therapy since

she was 3 months of age because of the risk of being developmentally

delayed due to her med problems and her high muscle tone. Due to

aspiration she was tube fed until 5 months and then had surgery for

severe trachealmalasia. I thank God for her early intervention and

give much credit to her PT, OT, and SLP. Unfortunately she is still

pretty delayed and has no words. She is now 22 1/2 months. She is

still small 21 1/2# and 30 1/8 " . Her greatest strength being gross

motor skills and weakest being speech and communication in general.

She didn't have any seizures until 19 months and had 3 grand mals in

24 hours. After being treated at Children's Mem in Chicago, she was

sent home on phenobarb. After 2 weeks she was taken off the med for

an allergic reaction and is still on no meds, nor has she had a

seizure since the only 3 on valentines day. Her geneticist is pretty

sure of some genetic problem, but of course, no DX.

I would love to start her on the ProEFA, but need to know that it is

okay with her med problems. I am pretty sure that she has oral

apraxia just from the checklist at the website. Most of the stuff on

that list is her besides a few. So, due to her nonverbal status,

maybe we are looking at verbal apraxia. I know that oral apraxia can

be diagnosed much sooner.

Any input would be greatly appreciated. This looks like a great

place to yak about our kids.

God Bless,

Amber

[Guest guest]

Hi Amber,

My daughter is 7 years old and has cerebral palsy and has a seizure disorder

as a result of her cp. She's not been formally diagnosed with apraxia

(it seems since she's had the main diagnosis of cp - nobody thought to

look further than that), but her speech therapist and neurologist both

feel she does have it (wish I would have known to ask about it 5 years ago!).

Her neurologist felt that the ProEFA can't do any harm so he was fine with

us starting her on it. It will be 4 weeks this Friday that she's been

taking 1 capsule a day of the ProEFA and we have not noticed any seizure

activity. She is taking Topamax so her seizures are under control.

Actually, since we've done HBOT (Hyperbaric Oxygen Therapy), she's only

had 1 clinical seizure in the past 2 and a half years (she used to get

about 2-3 a week). But anyway, so far we have had no reason for concerns

with ProEFA and my daughter's seizures.

Vicky

----- Original Message -----

Hi all. I am new here and just a had question for anyone with a

similiar experience. I would like to start my daughter on ProEFA. I

am curious to know if anybody has a child with a seizure disorder and

is using proEFA. Has anyone heard any discrepancy with the two? A

little background of Sammy, in a nutshell, is that she was born full

term and SGA. 5# 4oz's and 16 1/2 " . She has been in therapy since

she was 3 months of age because of the risk of being developmentally

delayed due to her med problems and her high muscle tone. Due to

aspiration she was tube fed until 5 months and then had surgery for

severe trachealmalasia. I thank God for her early intervention and

give much credit to her PT, OT, and SLP. Unfortunately she is still

pretty delayed and has no words. She is now 22 1/2 months. She is

still small 21 1/2# and 30 1/8 " . Her greatest strength being gross

motor skills and weakest being speech and communication in general.

She didn't have any seizures until 19 months and had 3 grand mals in

24 hours. After being treated at Children's Mem in Chicago, she was

sent home on phenobarb. After 2 weeks she was taken off the med for

an allergic reaction and is still on no meds, nor has she had a

seizure since the only 3 on valentines day. Her geneticist is pretty

sure of some genetic problem, but of course, no DX.

I would love to start her on the ProEFA, but need to know that it is

okay with her med problems. I am pretty sure that she has oral

apraxia just from the checklist at the website. Most of the stuff on

that list is her besides a few. So, due to her nonverbal status,

maybe we are looking at verbal apraxia. I know that oral apraxia can

be diagnosed much sooner.

Any input would be greatly appreciated. This looks like a great

place to yak about our kids.

God Bless,

Amber

[Guest guest]

Hello to all,

I find this discussion very interesting. My daughter had her first " grand

mal " seizure on 2/22/02. And a second febrile seizure (which was much

shorter in duration) six weeks later. She is now 33 months old. She was on

DHA Jr. for about six months or one bottle, then I switched to the ProEFA,

one capsule per day. She took ProEFA for about two months before the first

seizure. I haven't seen the literature on Borage Oil or the Primrose Oil

causing seizures but I do not attribute the seizures to the ProEFA. In fact

I have increased the ProEFA now to two capsules per day and have high hopes

that we will not have another seizure. That " Epilepsia " January 2002 journal

article about Omega 3 reducing seizure frequency and intensity is what I am

betting on. I would be interested to hear Dr. Katz's opinion on the use of

EFA's and seizures disorders.

We haven't seen the dramatic results in speech that I hear about on this

listserv but we have seen overall improvement in her Global developmental

delay. Her receptive language skills have greatly improved. The speech

pathologist updated her long term goals and hopes to have 20 to 30 spoken

words within the year and be up to 300 words on the receptive language

goals.

Of course we are battling the insurance company for the habilitative

services as many of you have discussed. I would like to take this

opportunity to say thanks to everyone for sharing their experiences. I have

learned so much from reading about the experiences of others. I feel more

prepared for some of the difficulties that arise. I never expected a denial

on the habilititave services. And the discussion about husbands

participation, my husband hit the roof when he read the denial letter. Now

is not the time to be emotional just resourceful.

So off to the specialist we go.

Deirdre

Re: [ ] about ProEFA?

>

>

> From one Donna to another and from one mommy to another, start him

> right away on EFA, I wish, oh how I wish I had known about them a

> year ago. Our son does have a seizure disorder that effects his

> receptive and expressive speech, and was dx'd a year ago and just 4

> weeks ago, on April 1st. I started him on Nordic Naturals Pro-EFA and

> we are seeing ton's of spontaneous speech. Before he would only talk

> if prompted and we are also seeing tons more new words, like singing

> along to videos and songs we have never heard him say before. We do

> give 2 of them, started off with just 1 for 2 weeks. He weighs 47lbs.

> Hugs and goodluck

>

> Mark & Donna/Indiana

> Carl 20, Hayden (LKS), ,Trevor 3.11,

> Baby Sister-Madison b:01-01-02

> Scrapbook Addict, to visit my album,

> go to: http://www.picturetrail.com/tripletmom98/417049

> " The mother of a disabled child will never take for granted a " spoken

> word " . She will never consider a " step " ordinary. When her child

> says " momma " for the first time, she will be present at a miracle and

> know it " Erma Bombeck

>

> =====

>