Re: humbly asking for advice (depakene/valproic acid)

[Guest guest]

We were on depakote, so I can tell you our experience

with that. While my son was on it, he was sick alot,

he had increased seizures, and his eeg showed a

background slowing. We took him off and 3 months

later the background slowing was totally gone- yay!.

If your child needs to be on something why not

experiment with another drug- lamictal, topamax,

keppra... all supposed to be very safe. Good luck

--- littlroses <littlroses@...> wrote:

>

> My daughter is on depakene. She has been on it

> since she was 2

> years old. She is now 7.

>

> I want her off the drugs. At her last visit to the

> ped. neurologist

> in Nov., he looked at her EEG and said they were

> significantly

> improved, but could not take her off the medication.

>

>

> From what I understand, valproic acid (or is it all

> seizure meds)

> can cause readings on an EEG? Is this true? Can

> the medicine

> itself cause EEG abnormalities?

>

> He says she should be able to be off the meds by

> late teens. The

> longer the meds keep her brain from going into

> seizures, the better

> she'll get. Basically, the brain wants to do

> familiar patterns so

> preventing it from doing so will keep her safer from

> seizures.

>

> My husband and I argued last night about what to do.

> He says we

> must do what's best for her. I agree of course, but

> I don't know

> that meds are what's best for her. The doc says the

> meds are best

> for her. In my heart, I think I can help her

> without them. I

> helped her by changing her diet. That's how she got

>

> the " significantly improved " results on the EEG.

>

> I know her side effects are significant. I know the

> valproic acid

> is dumping lots of bismuth into her. I know it does

> a lot of bad

> things. The one good thing it does is keep her from

> having seizures.

>

> Of course, the doc believes in the meds...nothing

> alternative. He

> does not know I changed her diet.

>

> I would like to know if anyone has specificially

> weaned their child

> from valproic acid. Were they on the drug a long

> time or short

> time? What were the weaning side effects

> experienced? Were there

> rebound seizures from the weaning?

>

> Do meds cause blips on the EEGs?

>

> This doc doesn't want me to take her off the meds.

> I want to take

> her off the meds...but don't know if that truly is

> the right thing

> to do or not. My gut is telling me that because

> it's valproic ACID

> then her gut may never truly heal if the ACID part

> is messing with

> her gut. But how do I tell that to a doctor who

> will think I am a

> nutjob? How do I convince a doctor to take her off

> drugs? Or do I

> convince? Do I just demand?

>

> I feeling a little distraught today because, it's

> just so hard to

> love someone so much and not know how to help

> them...I'm sure you

> all must know very well!

>

> Thanks

> Mindy

>

>

>

>

__________________________________________________

[Guest guest]

--- " littlroses " <littlroses@y...> wrote:

> Basically, the brain wants to do familiar patterns so

> preventing it from doing so will keep her safer from seizures.

This is precisely what EEG Neurofeedback is designed to address -

helping the brain learn to establish normalized activity. If you can

afford it, I'd recommend it. It worked well (for 4 years) for my wife

(in conjunction with a diet, supplements and sleep regimen). Now that

we are done having children, she is using it again to re-establish

nomalized brain activity.

[Guest guest]

Bernard, Is this something that has been done at home or in a facility

with the care of a doctor?

thanks

lisa

> > Basically, the brain wants to do familiar patterns so

> > preventing it from doing so will keep her safer from seizures.

>

> This is precisely what EEG Neurofeedback is designed to address -

> helping the brain learn to establish normalized activity. If you can

> afford it, I'd recommend it. It worked well (for 4 years) for my wife

> (in conjunction with a diet, supplements and sleep regimen). Now that

> we are done having children, she is using it again to re-establish

> nomalized brain activity.

[Guest guest]

it's just so hard to

>love someone so much and not know how to help them...I'm sure you

>all must know very well!

Mindy,

I know excately how you feel. I was in that " helpless " situation not too long

ago and to a certain degree, I still am.

My daughter is on 500 mg of Depakote in combination with 500 mg of Zonegran

per day.

The thought of being medication free is on one hand a good one and on the

other hand a scary one. We weaned Topemax and had withdrawal seizures so bad

that

she went into status. You talk about scared...

However, I went to a epilepsy seminar a couple of years back and the guy who

spoke told us that seizures are like a path in the grass, the more you walk

that path the balder the path gets but if you stop using that path the grass

will grow back. This same theory he said applies to seizures. If you find the

right meds and shut down the seizure path the brain will retrain itself not to

have seizures.

I cannot tell you what to do. The only thing I can do is share my

sympathy/empathy and tell you that there are others who share your concern. We

love our

children and will do everything to help them. It is scary!

If you believe in God pray about it.

Tracey

[Guest guest]

Dear Mindy,

i can understand fully where you are coming from.....my

heart goes out to you.

Our story is a longggggg one but briefly what we found to be the problem

with Depakote after we had my daughter on it for 6 years...

iin Leah it suppressed her appetite...gave her tummy soreness...made her

lethargic and had some affect on her personality.Also it has the potential

to affect bone density if used over a period of time. This we had confirmed

thru Bone density scanning and yes she had diminished bone density.

if your gut feeling is telliing you to consider other options why not do

some reasearch. Thats what i did and after unsucccessfull drug treatment we

had Leah start the Ketogenic Diet. we were able to wean her from all meds

and she became sz free. Now some years later the sz's are back but far fewer

and less severe and we are currently treating her for food intolerances.

Many of these drugs do cause problems with the gut as you acknowledge.

When weaning the Depakote we had horrible withdrawal sympptoms and we had to

go very slowly so i suggest don't consider doing it without medical

supervision. BTw i have read many articles and studies that suggest that

somw sz drugs do in fact trigger more or different types of sz's, this was

certainly true in Leah;s case. Over the years and with drug trt the sz

number escalated but the dr's insisted in keeping on and adding in others.

Leah is so much better cognitively without meds even tho she still has some

sz activity.

this is just out experience but in the scheme of things i have learnt much

by the experience of others...i wish you all the best....

Jeanette

>From: " littlroses " <littlroses@...>

>Reply-

>

>Subject: [ ] humbly asking for advice (depakene/valproic acid)

>Date: Tue, 12 Apr 2005 16:34:57 -0000

>

>

>My daughter is on depakene. She has been on it since she was 2

>years old. She is now 7.

>

>I want her off the drugs. At her last visit to the ped. neurologist

>in Nov., he looked at her EEG and said they were significantly

>improved, but could not take her off the medication.

>

>From what I understand, valproic acid (or is it all seizure meds)

>can cause readings on an EEG? Is this true? Can the medicine

>itself cause EEG abnormalities?

>

>He says she should be able to be off the meds by late teens. The

>longer the meds keep her brain from going into seizures, the better

>she'll get. Basically, the brain wants to do familiar patterns so

>preventing it from doing so will keep her safer from seizures.

>

>My husband and I argued last night about what to do. He says we

>must do what's best for her. I agree of course, but I don't know

>that meds are what's best for her. The doc says the meds are best

>for her. In my heart, I think I can help her without them. I

>helped her by changing her diet. That's how she got

>the " significantly improved " results on the EEG.

>

>I know her side effects are significant. I know the valproic acid

>is dumping lots of bismuth into her. I know it does a lot of bad

>things. The one good thing it does is keep her from having seizures.

>

>Of course, the doc believes in the meds...nothing alternative. He

>does not know I changed her diet.

>

>I would like to know if anyone has specificially weaned their child

>from valproic acid. Were they on the drug a long time or short

>time? What were the weaning side effects experienced? Were there

>rebound seizures from the weaning?

>

>Do meds cause blips on the EEGs?

>

>This doc doesn't want me to take her off the meds. I want to take

>her off the meds...but don't know if that truly is the right thing

>to do or not. My gut is telling me that because it's valproic ACID

>then her gut may never truly heal if the ACID part is messing with

>her gut. But how do I tell that to a doctor who will think I am a

>nutjob? How do I convince a doctor to take her off drugs? Or do I

>convince? Do I just demand?

>

>I feeling a little distraught today because, it's just so hard to

>love someone so much and not know how to help them...I'm sure you

>all must know very well!

>

>Thanks

>Mindy

>

>

>

[Guest guest]

Hi Mindy,

Anticonvulsants can have some serious long term side

effects,including making seizures worse. Has your daughter's doctor

been monitoring her for vitamin D and calcium deficiencies?

Depakene interferes with how the body metabolizes vitamin D. This

could lead to deficiency and other problems. Low levels of

vitamin D prevent the normal absorption and metabolism of calcium

and phosphorus. This can affect many things including her seizure

threshold and bone development. One of the side effects can be

carnitine deficiency which is very serious. This can lead to

hyperammonemia (too much ammonia in the blood) which again, may

lower the seizure threshold, damage her brain and liver. Depakene

can also cause liver damage.

I don't know where you are, but consider contacting Dr. Donna

s at the s/Reiter Epilepsy Reseach Program in Santa

, Ca. (http://www.andrewsreiter.com). You can reach her from

their web page. If your daughter's doctor is not an expert in

childhood seizure disorders? Regardless,can you take her to an

epilepsy center or different specialist for further evaluation?

Below are some links to information you may find useful.

Zoe

Loss of seizure control due to anticonvulsant-induced hypocalcemia.

Ann Pharmacother. 2004 Jun;38(6):1002-5. Epub 2004 Apr 14.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=PubMed

Depakene : Serious side effects of Depakene : Epilepsy.com ......

Depakene can deplete the liver's stores of carnitine, and some

believe that taking extra carnitine can help prevent the rare cases

of liver damage. ...

http://professionals.epilepsy.com/medications/p_depakene_seriousside.h

tml

.... Chiarelli F. Carnitine deficiency and hyperammonemia in

children ... Cost S,

Singhi P. Does carnitine administration improve the symptoms

attributed to ...

http://www.truestarhealth.com/Notes/1535009.html

Hyperammonemia can be caused by valproate:

Unusual causes of hyperammonemia in the ED.

.... Acute hyperammonemia is a medical emergency for which immediate

steps ...

Anticonvulsants; Antimetabolites, Antineoplastic; Fluorouracil;

Valproic Acid ...

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=15011224

Vitamin Interactions:

Also indexed as: Depakene Syrup®, Depakene®, Depakote®,

Divalproex

Sodium, ... Folic acid*. L-Carnitine*. Vitamin A*. Vitamin B12*.

Vitamin B6*. Vitamin D*

http://www.raleys.com/cfapps/healthnotesra/healthnotes.cfm?

org=raleys & ContentID=1535009#Dni-Supp

Epilepsy Drugs: Nutrients Depleted, Brand Names, Usage,

Warnings ...... Depacon®; Depakene®; Depakote®;

Corticotropin (ACTH).

Sources: Research References/Bibliography ... Biotin, Folic Acid,

Vitamin D. US Brand Names: ...

http://www.healingwithnutrition.com/edisease/epilepsy/epilepsydrugs.ht

ml

Association for Comprehensive Neurology:

This group deals mostly with Tourette's and Autism, but may be able

to help you find a neurologist who can help your daughter.

http://www.latitudes.org

>

> My daughter is on depakene. She has been on it since she was 2

> years old. She is now 7.

[Guest guest]

Hi Mindy,

Anticonvulsants can have some serious long term side

effects,including making seizures worse. Has your daughter's doctor

been monitoring her for vitamin D and calcium deficiencies?

Depakene interferes with how the body metabolizes vitamin D. This

could lead to deficiency and other problems. Low levels of

vitamin D prevent the normal absorption and metabolism of calcium

and phosphorus. This can affect many things including her seizure

threshold and bone development. One of the side effects can be

carnitine deficiency which is very serious. This can lead to

hyperammonemia (too much ammonia in the blood) which again, may

lower the seizure threshold, damage her brain and liver. Depakene

can also cause liver damage.

I don't know where you are, but consider contacting Dr. Donna

s at the s/Reiter Epilepsy Reseach Program in Santa

, Ca. (http://www.andrewsreiter.com). You can reach her from

their web page. If your daughter's doctor is not an expert in

childhood seizure disorders? Regardless,can you take her to an

epilepsy center or different specialist for further evaluation?

Below are some links to information you may find useful.

Zoe

Loss of seizure control due to anticonvulsant-induced hypocalcemia.

Ann Pharmacother. 2004 Jun;38(6):1002-5. Epub 2004 Apr 14.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=PubMed

Depakene : Serious side effects of Depakene : Epilepsy.com ......

Depakene can deplete the liver's stores of carnitine, and some

believe that taking extra carnitine can help prevent the rare cases

of liver damage. ...

http://professionals.epilepsy.com/medications/p_depakene_seriousside.h

tml

.... Chiarelli F. Carnitine deficiency and hyperammonemia in

children ... Cost S,

Singhi P. Does carnitine administration improve the symptoms

attributed to ...

http://www.truestarhealth.com/Notes/1535009.html

Hyperammonemia can be caused by valproate:

Unusual causes of hyperammonemia in the ED.

.... Acute hyperammonemia is a medical emergency for which immediate

steps ...

Anticonvulsants; Antimetabolites, Antineoplastic; Fluorouracil;

Valproic Acid ...

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=15011224

Vitamin Interactions:

Also indexed as: Depakene Syrup®, Depakene®, Depakote®,

Divalproex

Sodium, ... Folic acid*. L-Carnitine*. Vitamin A*. Vitamin B12*.

Vitamin B6*. Vitamin D*

http://www.raleys.com/cfapps/healthnotesra/healthnotes.cfm?

org=raleys & ContentID=1535009#Dni-Supp

Epilepsy Drugs: Nutrients Depleted, Brand Names, Usage,

Warnings ...... Depacon®; Depakene®; Depakote®;

Corticotropin (ACTH).

Sources: Research References/Bibliography ... Biotin, Folic Acid,

Vitamin D. US Brand Names: ...

http://www.healingwithnutrition.com/edisease/epilepsy/epilepsydrugs.ht

ml

Association for Comprehensive Neurology:

This group deals mostly with Tourette's and Autism, but may be able

to help you find a neurologist who can help your daughter.

http://www.latitudes.org

>

> My daughter is on depakene. She has been on it since she was 2

> years old. She is now 7.

[Guest guest]

In our case, it was done at a clinic in the care of a doctor

(psychologist) who was recommended by 's primary doctor.

> > > Basically, the brain wants to do familiar patterns so

> > > preventing it from doing so will keep her safer from seizures.

> >

> > This is precisely what EEG Neurofeedback is designed to address -

> > helping the brain learn to establish normalized activity. If you

can

> > afford it, I'd recommend it. It worked well (for 4 years) for my

wife

> > (in conjunction with a diet, supplements and sleep regimen). Now

that

> > we are done having children, she is using it again to re-

establish

> > nomalized brain activity.

[Guest guest]

-thanks I think it is much safer that way.

-- In , " Bernard " <bernard@c...> wrote:

>

> In our case, it was done at a clinic in the care of a doctor

> (psychologist) who was recommended by 's primary doctor.

>

>

>

>

> > > > Basically, the brain wants to do familiar patterns so

> > > > preventing it from doing so will keep her safer from seizures.

> > >

> > > This is precisely what EEG Neurofeedback is designed to address -

> > > helping the brain learn to establish normalized activity. If you

> can

> > > afford it, I'd recommend it. It worked well (for 4 years) for my

> wife

> > > (in conjunction with a diet, supplements and sleep regimen). Now

> that

> > > we are done having children, she is using it again to re-

> establish

> > > nomalized brain activity.

[Guest guest]

Tracey,

Many times, the meds cause more problems than the seizures themselves specially

when they increase the seizures as in what happened to my daughter. She went

from 3 to 4 in one year to hundreds in just a couple of months due to the meds.

I wish I had known about my epilepsy groups before I started meds because I

would have not started her on them at all. It was a hell I never want to go

through again. Meds may be good for some children if they work for them, but

from what I have heard from this and other epilepsy groups, the negatives of

medicating far outweigh the positives.

Grace

I went to a epilepsy seminar a couple of years back and the guy who

spoke told us that seizures are like a path in the grass, the more you walk

that path the balder the path gets but if you stop using that path the grass

will grow back. This same theory he said applies to seizures. If you find the

right meds and shut down the seizure path the brain will retrain itself not to

have seizures.

I cannot tell you what to do. The only thing I can do is share my

sympathy/empathy and tell you that there are others who share your concern. We

love our

children and will do everything to help them. It is scary!

If you believe in God pray about it.

Tracey