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Date: Mon, 23 Aug 2004 10:48:47 -0400

Subject: Re: [ ] Re: My first post: Epilepsy and Autism

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Mindy,

Is your daughter seizure free or does she still have them? That sounds

like an interesting book and I will look into getting it. That specific

carb diet you have her on, is that from a dietician or are you doing it

yourself? I would love to try that diet, but don't know how to really go

about it since she can be pretty finicky when it comes to food specially

vegetables and fruit. Thanks for your post and your help!

Grace

On Sun, 22 Aug 2004 22:06:42 -0000 " mindymw " <corkyjane@...>

writes:

> Hello. My daughter is also 6 years old. Had her first seizure at

> 15months old. She is also ASD. The percentages are that 1/3 of

> those with autism have a seizure disorder or will develop seizures

> at around puberty. I have her on the specific carbohydrate diet and

>

> I'm hoping she will get off depakene sometime in November. There is

>

> a gut brain connection. There's a great book that talks about the

> gut brain connection in detail called " The Second Brain " by

>

> Gershon. What happens in the gut can affect what happens in the

> brain. Did you know that 95% of seratonin is produced in the gut?

>

> It's not made in the brain. The types of foods we eat can affect

> which types of brain hormones can cross the blood brain barrier.

> Certain chemicals compete for access through the BBB and what we eat

>

> can enhance one over the other. So anyone with an anxiety disorder

>

> might benefit from being aware what foods they are eating that will

>

> boost their own seratonin levels (like tryptophan packed foods such

>

> as turkey or yellowfin tuna). It's pretty interesting and much more

>

> interelated than I'd ever imagined. I'm still learning and will

> keep you updated on her progress.

>

> Mindy in Oregon

>

> > Hi! My son has epilepsy. He has had it since age 2, and now

>

> is

> > 6. We still see seizures around 4am to 7am only. He started on

> > dilantin,along with,clonazepam, and then lamictol. We have gotten

>

> > him off of dilantin, and are incresing the lamictol to try to stop

>

> > the seizures. I was wondering about autism? Is this a related

> > illness? Or an attribute or something connected to epilepsy? He

>

> has

> > learning disabilities. He is just now getting toilet trained, and

>

> he

> > has difficulty in speech. He also seems to have trouble listening

>

> or

> > interpreting what he is being told to do. I am wondering is this

>

> a

> > sign of autism as well? Thanks!

>

August 24, 2004

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Date: Tue, 24 Aug 2004 09:46:58 -0400

Subject: Re: [ ] Re: Son 19 - seizures

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Yes, my daughter's tonic-clonic happen when she's falling asleep and she

can tell when they're coming and calls me before she goes into one, so

I'm there when she has them. I also have that fear of her dying while

having a tonic-clonic, but once you get to know the people in this group,

you'll find that many of them have tonic-clonics and have for many years

and they're still with us, thank God.

During the day, my daughter usually has partials which last anywhere from

15 - 30 seconds, but her seizures seem to change with the different meds.

Before I put on Lamictal, I asked the advice of the people who

are taking it and those whose children are on it and the majority of them

liked it because it didn't have the bad side effects of many other AEDs.

We've been on it for about 7 weeks but we're still on a very low dose so

I can't tell you too much about it yet since the side effects usually

happen on higher doses. What dose did your neuro start your son on?

When I told my ped that our neuro put on Lamictal, she told me

that Lamictal is supposed to be a real good drug for epilepsy, I hope

she's right.

Let me know how your son does on it, OK. Take care!

Grace

On Tue, 24 Aug 2004 00:09:32 -0000 " mamamurdock " <kmurd45480@...>

writes:

>

> My son's last seizure was a tonic-clonic while falling asleep. I

> have (what I hope is an irrational) fear that he'll die by

> aspirating

> his saliva or something. What if I don't hear him, etc? Do you

> hear

> your daughter? Does your daughter have seizures while she's awake

> during the day? Our neurologist started him on Lamictil today. I'm

>

> hating that we're starting down this road, but also hate to NOT do

> something. I was very frustrated that the neurologist doesn't seem

>

> to want to do ANY testing. We've had a negative EEG and negative CT

>

> scan. Maybe he just knows that the cause probably won't show up,

> but

> I still want to try. We're also going to start LifeForce's Body

> Balance - a whole foods vitamin in liquid form. We'll also add

> their

> calcium supplement (has magnesium.) I'm rambling, sorry. Thanks so

>

> much for your support. God Bless.

>

> > I know exactly how you're feeling, my daughter, , had her

>

> first

> > seizures also tonic-clonic when she was almost 12yo and she's now

>

> almost

> > 14 and continues to have them. She mostly has partials, but they

> > occacially generalize to tonic-clonics at night time while she's

> falling

> > asleep. It is an awful feel when your child is going through this

>

> and

> > for almost two years I have been trying just about anything to try

>

> to

> > stop them without success. Sometimes, I wonder if we wouldn't be

>

> better

> > off without the meds since she seemed alot better off when she was

>

> off of

> > them than on them not to mention that she was herself and without

>

> the

> > crazy side effects. We have already been on Trileptal which we

> had

> to

> > stop because it increased her seizures, then we tried Zonegran

> which

> > we're still on but hoping to wean her off of it and Lamictal which

>

> we are

> > increasing very slowly due to the rash that's associated with this

>

> med.

> >

> > I wish you and your son all the best and I hope and pray that your

>

> son

> > will find better control than we have. Take care and God Bless!

> >

> > Grace

> >

> > On Sun, 22 Aug 2004 21:28:29 -0000 " mamamurdock "

> <kmurd45480@a...>

> > writes:

> > >

> > > Hi!

> > >

> > > My son is 19 years old. He had his first seizure (clonic-tonic)

>

> on

> > >

> > > December 20th. He said he had felt feverish all night long

> prior

> to

> > >

> > > seizure at 11:00 a.m. Temp. was normal at E.R. Later, when we

>

> > > returned home, his temp. went up to 104! Very scary. Thought

> we

> > > were " done " a few days later when he was finally better.

> > >

> > > He didn't have another seizure until July 5th. Late night party

>

> > > with

> > > friends - he had some alcohol to drink.

> > >

> > > Visit to the neuro - he felt that my son needed to " work really

>

> > > hard "

> > > to have a seizure, so we decided against meds at the time.

> > >

> > > August 15th-another seizure-day after a weekend on the lake with

>

> > > friends. Lots of skiing, tubing, etc. Little alcohol the night

>

> > > before.

> > >

> > > August 22 (early this morning) another seizure. Had been

> getting

> to

> > >

> > > bed at an appropritate hour all week. Absolutely NO ALCOHOL.

> Had

> > > been taking vitamins, eating healthier, etc.

> > >

> > > I'm a very scared mom. Hope to see the neuro tomorrow.

> > >

> > > Do you think the fever caused the first seizure, or do you think

>

> > > that

> > > he always had an underlying seizure disorder that the

> fever " brought

> > >

> > > out? "

> > >

> > > I'm so worried. I'm sure he'll be diagnosed with a seizure

> > > disorder. I'm feeling very protective. Wouldn't mind a little

>

> > > feedback, thoughts, advice, etc.

> > >

> > > Thanks for listening.

> > >

August 25, 2004

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Date: Wed, 25 Aug 2004 12:20:02 -0400

Subject: Re: [ ] Re: Son 19 - seizures

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Those are good doses to start off specially since your son is 19. My

daughter is almost 14yo and is only on 2 1/2 mg 3 times a day but she's

also on Zonegran which we're working on weaning her off of while raising

the Lamictal.

I was also told that most people don't know they've had a seizure until

it's over. My daughter knows when it's coming but I don't know how much

of the seizure she remembers, she's also developmentally challenged so

she has a hard time explaining what she feels when she has the partials

or auras. The good thing about her being able to tell me when they're

coming is that it prepares me for it so that I can be there for her. I

hate these seizures but the good thing is that we're not alone.

We all have that tendency to be overprotective of our children, these are

our babies and they need us. The baby monitor is a good idea this way

you can hear him if and when he has another one. Right now, my oldest

daughter shares her room with (the one with seizures) even

though she has her own room, but if and when the oldest decided to move

out, I will also use a baby monitor so that I can hear her.

Please feel free to ask any questions you need to or just vent. This is

very hard to deal with and we all need support. God Bless!

Grace

On Tue, 24 Aug 2004 20:38:10 -0000 " mamamurdock " <kmurd45480@...>

writes:

> Hi again!

> My son's Lamictal dosage: 50 mg/per day for weeks 1-2; 100 mg/per

> day for weeks 3-4; 200 mg/per day week 5 and then I guess we'll

> adjust according to how it works.

>

> I'm glad to hear that people who have tonic-clonics while going to

> or

> in their sleep " make it " through the night. I haven't been able to

>

> sleep very well, just worried. My son said he didn't know that his

>

> last seizure was happening until it was over. Maybe I could put a

> monitor (hesitate to say " baby " monitor) in his room so I could hear

>

> if " it " happens. Am I being overprotective?

>

> Thanks for your input and support.

>

> > > > I know exactly how you're feeling, my daughter, , had

>

> her

> > >

> > > first

> > > > seizures also tonic-clonic when she was almost 12yo and she's

>

> now

> > >

> > > almost

> > > > 14 and continues to have them. She mostly has partials, but

> they

> > > > occacially generalize to tonic-clonics at night time while

> she's

> > > falling

> > > > asleep. It is an awful feel when your child is going through

>

> this

> > >

> > > and

> > > > for almost two years I have been trying just about anything to

>

> try

> > >

> > > to

> > > > stop them without success. Sometimes, I wonder if we wouldn't

>

> be

> > >

> > > better

> > > > off without the meds since she seemed alot better off when she

>

> was

> > >

> > > off of

> > > > them than on them not to mention that she was herself and

> without

> > >

> > > the

> > > > crazy side effects. We have already been on Trileptal which

> we

> > > had

> > > to

> > > > stop because it increased her seizures, then we tried Zonegran

>

> > > which

> > > > we're still on but hoping to wean her off of it and Lamictal

> which

> > >

> > > we are

> > > > increasing very slowly due to the rash that's associated with

>

> this

> > >

> > > med.

> > > >

> > > > I wish you and your son all the best and I hope and pray that

>

> your

> > >

> > > son

> > > > will find better control than we have. Take care and God

> Bless!

> > > >

> > > > Grace

> > > >

> > > > On Sun, 22 Aug 2004 21:28:29 -0000 " mamamurdock "

> > > <kmurd45480@a...>

> > > > writes:

> > > > >

> > > > > Hi!

> > > > >

> > > > > My son is 19 years old. He had his first seizure (clonic-

> tonic)

> > >

> > > on

> > > > >

> > > > > December 20th. He said he had felt feverish all night long

>

> > > prior

> > > to

> > > > >

> > > > > seizure at 11:00 a.m. Temp. was normal at E.R. Later, when

>

> we

> > >

> > > > > returned home, his temp. went up to 104! Very scary.

> Thought

> > > we

> > > > > were " done " a few days later when he was finally better.

> > > > >

> > > > > He didn't have another seizure until July 5th. Late night

> party

> > >

> > > > > with

> > > > > friends - he had some alcohol to drink.

> > > > >

> > > > > Visit to the neuro - he felt that my son needed to " work

> really

> > >

> > > > > hard "

> > > > > to have a seizure, so we decided against meds at the time.

>

> > > > >

> > > > > August 15th-another seizure-day after a weekend on the lake

>

> with

> > >

> > > > > friends. Lots of skiing, tubing, etc. Little alcohol the

> night

> > >

> > > > > before.

> > > > >

> > > > > August 22 (early this morning) another seizure. Had been

> > > getting

> > > to

> > > > >

> > > > > bed at an appropritate hour all week. Absolutely NO

> ALCOHOL.

> > > Had

> > > > > been taking vitamins, eating healthier, etc.

> > > > >

> > > > > I'm a very scared mom. Hope to see the neuro tomorrow.

> > > > >

> > > > > Do you think the fever caused the first seizure, or do you

> think

> > >

> > > > > that

> > > > > he always had an underlying seizure disorder that the

> > > fever " brought

> > > > >

> > > > > out? "

> > > > >

> > > > > I'm so worried. I'm sure he'll be diagnosed with a seizure

>

> > > > > disorder. I'm feeling very protective. Wouldn't mind a

> little

> > >

> > > > > feedback, thoughts, advice, etc.

> > > > >

> > > > > Thanks for listening.

> > > > >

August 25, 2004

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August 27, 2004

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Date: Sat, 28 Aug 2004 11:37:16 EDT

Subject: Re: [ ] Digest Number 1585

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In a message dated 8/28/2004 8:21:10 AM Eastern Daylight Time,

writes:

Date: Fri, 27 Aug 2004 04:53:35 -0700 (PDT)

From: " Delores F. " <tequilarose413@...>

Subject: Re: Digest Number 1583

Good Morning MJH,

when is about to have a seizure...we try to distract him..and try to

take his mind off of it...

we get Barney...or one of his favorite toys..and try to get him to focus on

other things...

we ask him , where is Daddy?

Where is Mommy?

I get his phonics toy, and ask him to show me the letters ...I'll ask him to

push the letter K...the letter Y...and we try to get him to spell his name.

Sometimes it works...

sometimes it doesn't.

Then I have also found that it is better if he has the seizure and get it

over with ...cuz sometimes the next one is worse . Longer...and more shaking ,

jerking or twitching.

All I know..Is that I can't wait for the day that he stops having them, cuz I

have really had it!

I am just physically and mentally exhausted.

this has all taken a toll on me.

I'm ready for the nut house.

Have a blessed day!

love

hugs

&

blessings to you and to Charlie!!

Hope he's doing well...HOPE your taking time out for you too.

OXOXOXO

..

>>> Delores

I am Charlie's SOLE caregiver for almost eight years now since my husband's

death. We have been dealing with his petit mal, gran mal and status seizures

since we adopted him at age six years. Well over thirty years.

THe sound must be loud and sharp and unexpected to break the firing pattern

leading to seizures. Sometimes an unexpected pinch on the arm will have the

same effect. Sudden and unexpected, to fool the brain.

After any seizure episode, he gets Magnesium and vitamin B complex to make up

what was used up during the seizure. The officinalis tincture has

not failed to stop an oncoming seizure. We've been using it for a year plus

now.

mjh

August 29, 2004

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Date: Sun, 29 Aug 2004 12:48:15 -0400

Subject: Re: [ ]BodyBalance taken by 's son with epil Digest

Number 1586

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<. We are going to be giving a 1/2

ounce dose of BodyBalance as he is 40 lbs! 1 ounce for 100 lbs. >

Don,

we are a group discussing cures for epilepsy. Perhaps you could hold off on the

sales pitches for your product until after you have actually tested this on your

son and determined for sure that it is helpful for his condition. I am sure your

posts on this product would be a great help on a chronic fatigue syndrome group

until that time.

Good luck,

August 29, 2004

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Date: Mon, 30 Aug 2004 11:24:51 -0700

Subject: Re: [ ] Digest Number 1587

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,

My daughter was always hungry on the keto diet, though it worked for her for

a time. She was allowed 8 grams of carbs per day. Are total calories

restricted on the Atkins version? Is he eating lots of meat and cheese

products? Who determined the amounts of vitamins for compounding (and how -

blood tests?) Hope you don't mind the questions.

Sandy

Re: [ ] Digest Number 1587

> mjm,

>

> We tried Neuro Bio Feedback at the Institute for Children and Families in

West Chester PA. It was very expensive and did not help at all. We tried

weekly treatments for over 6 months. It was like flushing money (lots of

money) down the toilet. I read Symphony of the Brain and I have no doubt

Feedback can be helpful for some people. It just was not the answer for us.

We tried Homeopathy - three different practitioners - one an M.D.. We tried

Bio Chemist Sutton. We went to Pfeiffer Treatment Center. We tried

three different Christian Science Practitioners. We tried a Neurological

Chiropractor. A world famous Chinese Herbalist, A Chinese Acupuncturist

Doctor of Oriental Medicine. Telephone consultation with Braverman M.D.

Three different Neurologists, A Nutritionalist -who btw used liquid

minerals - this made things much worse - everyone please be careful when

adding minerals- liquid or Centrum whatever to a child's system - they

rarely need the extra heavy metals such as copper (despite the belief about

zinc balance) they definitely do not need mercury even in a tiny dosage or

antimony and most people with seizures do not need extra lithium in their

systems..

>

> I only stumbled into the thought of using the Atkins Diet once more as I

was researching the idea of using IV IG which was going to cost several

thousand dollars a treatment. I figured I would give it a shot despite Dr.

Braverman's admonishment that it would only cause him to lose weight. BTW he

hasn't lost an ounce because he eats lots of healthy foods all day long.

>

> At this point my son is on 10 grams of carbs a day. He takes Garden of

Life Perfect Food plus additional compounded formulas with mega doses of B

vitamins, zinc (no extra copper), also Cal-Mag, Magnesium Glycinate,

Pro-biotics, Nystatin, DMG, Glutitionine, Cod Liver Oil. This is his only

medication. In the past we have used Zarotin, Depakote (biggest nightmare of

my life), Lamictal (second worst), and Zonegran. I am not writing this down

as a recipe for anyone else to use. I know everyone is on their own journey

with this stuff and each person will benefit only from the proper thing for

them.

>

August 30, 2004

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Subject: [ ] Goal of Life

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Goal of Life

Lord Sri Krishna - The Supreme Personality of Godhead.

Please join our group:

guru_gauranga

Srimad Bhagavatam 1.2.10 says:

Life's desires should never be directed toward sense gratification. One should

desire only a healthy life, or self-preservation, since a human being is meant

for inquiry about the Absolute Truth. Nothing else should be the goal of one's

works.

PURPORT

The completely bewildered material civilization is wrongly directed towards the

fulfillment of desires in sense gratification. In such civilization, in all

spheres of life, the ultimate end is sense gratification. In politics, social

service, altruism, philanthropy and ultimately in religion or even in salvation,

the very same tint of sense gratification is ever-increasingly predominant. In

the political field the leaders of men fight with one another to fulfill their

personal sense gratification. The voters adore the so-called leaders only when

they promise sense gratification. As soon as the voters are dissatisfied in

their own sense satisfaction, they dethrone the leaders, The leaders must always

disappoint the voters by not satisfying their senses. The same is applicable in

all other fields; no one is serious about the problems of life. Even those who

are on the path of salvation desire to become one with the Absolute Truth and

desire to commit spiritual suicide for sense

gratification. But the Bhagavatam says that one should not live for sense

gratification. One should satisfy the senses only insomuch as required for

self-preservation, and not for sense gratification. Because the body is made of

senses, which also require a certain amount of satisfaction, there are

regulative directions for satisfaction of such senses. But the senses are not

meant for unrestricted enjoyment. For example, marriage or the combination of a

man with a woman is necessary for progeny, but it is not meant for sense

enjoyment. In the absence of voluntary restraint, there is propaganda for family

planning, but foolish men do not know that family planning is automatically

executed as soon as there is search after the Absolute Truth. Seekers of the

Absolute Truth are never allured by unnecessary engagements in sense

gratification because the serious students seeking the Absolute Truth are always

overwhelmed with the work of researching the Truth. In every sphere of li!

fe,

therefore, the ultimate end must be seeking after the Absolute Truth, and that

sort of engagement will make one happy because he will be less engaged in

varieties of sense gratification. And what that Absolute Truth is is explained

as follows.

Srimad Bhagavatam 1.2.10 says:

Learned transcendentalists who know the Absolute Truth call this nondual

substance Brahman, Paramatma or Bhagavan.

PURPORT

The Absolute Truth is both subject and object, and there is no qualitative

difference there. Therefore, Brahman, Paramatma and Bhagavan are qualitatively

one and the same. The same substance is realized as impersonal Brahman by the

students of the Upanisads, as localized Paramatma by the Hiranyagarbhas or the

yogis, and as Bhagavan by the devotees. In other words, Bhagavan, or the

Personality of Godhead, is the last word of the Absolute Truth. Paramatma is the

partial representation of the Personality of Godhead, and impersonal Brahman is

the glowing effulgence of the Personality of Godhead, as the sun rays are to the

sun-god. Less intelligent students of either of the above schools sometimes

argue in favor of their own respective realization, but those who are perfect

seers of the Absolute Truth know well that the above three features of the one

Absolute Truth are different perspective views seen from different angles of

vision.

As it is explained in the first sloka of the First Chapter of the Bhagavatam,

the Supreme Truth is self-sufficient, cognizant and free from the illusion of

relativity. In the relative world the knower is different from the known, but in

the Absolute Truth both the knower and the known are one and the same thing. In

the relative world the knower is the living spirit or superior energy, whereas

the known is inert matter or inferior energy. Therefore, there is a duality of

inferior and superior energy, whereas in the absolute realm both the knower and

the known are of the same superior energy. There are three kinds of energies of

the supreme energetic. There is no difference between the energy and energetic,

but there is a difference of quality of energies. The absolute realm and the

living entities are of the same superior energy, but the material world is

inferior energy. The living being in contact with the inferior energy is

illusioned, thinking he belongs to the inferior e!

nergy.

Therefore there is the sense of relativity in the material world. In the

Absolute there is no such sense of difference between the knower and the known,

and therefore everything there is absolute.

Always chant

Hare Krishna Hare Krishna Krishna Krishna Hare Hare

Hare Rama Hare Rama Rama Rama Hare Hare

http://www.vnn.org

http://www.vedabase.net

__________________________________________________

September 1, 2004

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Subject: Re: [ ] What about Depakote?

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Mark,

Your description is what is and has happened to my

son. It has been determined that the absence seizures

are gentic and his brother is starting to have them

too. ( hoppefully go away when he hit puberty?)

My question is :What did you do after depakote? My son

is allergic to Lamictal and zonagram, Keppra caused

bad depression..

Thanks

--- Mark Schauss <schauss@...> wrote:

> I also want to add that Depakote caused my daughter

> to go into a 6 hour

> seizure earlier this year. We eventually understood

> she developed an

> allergy to it.

>

> In health,

> Mark Schauss

> [ ] What about Depakote?

> >

> > Hi again everybody!

> >

> > My son's doctor is taking him off of Lamictal

> (due to the rash) and

> > placing him on Depakote. These drugs sound

> horrid! They all have

> > such terrible side effects! Will you please let

> me know what

> > experiences you have had with Depakote? I WISH

> there were

> > a " natural " way to treat him! Thanks for your

> input!

> >

September 3, 2004

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Date: Sat, 4 Sep 2004 10:24:15 -0400

Subject: Re: exp with zonegram?Re: [ ] What about Depakote?

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,

Everybody seems to see different side effects of every drug...for instance many

people talk about their kids becoming zombies on depakote, but my son became a

raging maniac that couldn't sleep at all.

Now Zonegran I was told could have worse side effects that depakote or lamictal

but we saw no side effects at all. In fact, if anything zonegran made my son

easier to get along, he was not tired, he slept better at bedtime..this was at

low doses. At higher doses it made his seizures worse not better.

Personally, I feel better about Zonegran than depakote or Lamictal...the

decision is yours to make. Good luck ,

exp with zonegram?Re: [ ] What about Depakote?

What are the side effects of zonegram? school, mood,

ect..

-- & Hill <rich.sue.hill@...>

wrote:

> is on 500 mgs depakote per day, divided

> into 3 doses over a 24 hr period - unfortunately

> entailing waking him at midnight for one, but this

> is the only way we have escaped the groggy slurry

> stuff as each dose peaks. We hate doing it, but not

> as much as the awful side effects he experiences if

> he has the doses any closer together. Having to go

> to these extremes probably tells us the dose is

> still a bit high for him to cope with fullstop (poss

> because of being on keto as well), but because he is

> finally completely seizure free after many yrs of

> not being, we are just too wary of upsetting the

> apple cart right now with med reductions.

> If we could get the slow/controlled release

> depakote here (we are in NZ) it would probably make

> life a heck of a lot easier, but we can't, so for

> now we'll plod on as is.

> He is nearly 8 yrs old, weighs about 27.5 kgs, so

> the 500 mgs means he is on about 18 mgs per kilo.

> Yes, he is on topomax as well, 150 mgs per day, so

> about 5 1/2 mgs per kg - close to the lowest end of

> 'theraputic'.

> Because he has always seemed to metabolise these

> meds in weird and wonderful ways, (seems to go thru

> extreme peaks and troughs) low doses and evenly

> spread, has really been the only way to go for him.

>

> ----- Original Message -----

> From: susan larsen

>

> -

> Just curious, What dose of depakote is he on and

> does

> he take topamax with it? My son is 9 yrs. at 58

> pounds

>

> Thanks

>

> -- & Hill

> <rich.sue.hill@...>

> wrote:

>

> > I know of a little boy who developed the SJ

> rash

> > on lamictal first time round, they took him

> off and

> > reintroduced it again a lot slower, and he was

> fine,

> > so maybe if the lamictal is successful seizure

> wise,

> > this option may be worth looking at? Obviously

> he

> > would have to be very closely monitored, and

> the

> > rash might return even if done this way, but

> it

> > could be worth a shot if the other aspects of

> this

> > med are acceptable side effect wise.

> > My son is on depakote (he was on

> lamictal

> > as well but we finished weaning it quite some

> time

> > ago) - has been now for 4 yrs at various

> doses,

> > right now he is on fine on it because it is at

> quite

> > a low mg/kg dose.

> > Weight gain and hair thinning/loss are the 2

> main

> > ones we found, with sedation and seizure

> increase a

> > risk if we went too high dose wise.

> > Yes, the AED side effects can be awful, esp

> if

> > doses are at the high end of the scale, of if

> > polypharmacy is used rather than one med at a

> time.

> > We started (7 yrs old now, nearly 8)

> on the

> > ketogenic diet 3 yrs ago which meant we were

> able to

> > substantially reduce his medications, and once

> we

> > had his AEDs at a lower level and his diet

> plan

> > sorted out correctly, we hit 100% seizure

> control

> > with his current combination. It's not what I

> would

> > call a 'natural' treatment in that the food is

> not

> > really not that 'natural' (but definitely

> still

> > very palatable if you can get creative..) for

> a

> > young kiddie, but it is natural as compared to

> > chemical effects of the AEDs. We hope to wean

> him

> > off both his current meds (low dose dep, low

> dose

> > topomax) to be rid of the med side effects

> once and

> > for all, but are waiting another 3 mths till

> he has

> > had a full 12 mths seizure free period on the

> diet

> > before doing so,

>

> [Non-text portions of this message have been

> removed]

>

September 7, 2004

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