Zonegran

[Guest guest]

Does anyone in this group take Zonegran? If so, I'd like to ask a few

questions!

[Guest guest]

My daughter takes Zonegran, if you like, I will converse with you.

Sincerely, Tracey

[Guest guest]

Hi ,

My 11 year old daughter has been on Zonegran in combination with Depakote for

over a year now and it has been a blessing to us. No side effects whatsoever.

But then again, every child is an individual and what is good for one is not

always good for another. Topemax was the nightmare for us.

Hope this helps,

Tracey

[Guest guest]

TRACEY, WHAT IS YOUR DAUGHTER'S NAME? I WANT TO WARN YOU ABOUT DEPAKOTE IT CAN

DO LIVER DAMAGE. WHEN I WAS 21 IT WAS DAMAGING MY LIVER, THE DR. AT THAT TIME

SAID TO ME WHAT ARE YOU DRINKING AND I TOLD HIM I DIDN'T DRINK AND HE SWORE

THAT I DID, I'VE NEVER WOULD DRINK ALCOHOL.THEN HE SAID THAT MY LIVER WAS

DAMAGED AND ITHAD TO BE THE DEPAKOTE DAMAGING IT SO ALWAYS KEEP BLOOD TEST

UPDATES.

Traceygrubbs@... wrote:Hi ,

My 11 year old daughter has been on Zonegran in combination with Depakote for

over a year now and it has been a blessing to us. No side effects whatsoever.

But then again, every child is an individual and what is good for one is not

always good for another. Topemax was the nightmare for us.

Hope this helps,

Tracey

[Guest guest]

Thanks Mark, actually we are about due for a blood level check. I think I'll

call the doctor Monday morning and have some labs drawn.

Please tell me me, how long were you on the Depakote and how many mg did you

take? How many times a day?

Thanks,

Sincerely,

Tracey

[Guest guest]

TRACEY, I TOOK 400 MG'S A DAY OF DEPAKOTE, FOR ALMOST 1 1/2 YEARS 200 MG'S

TWICE A DAY.THAT WAS 20 YEARS AGO, I HATE SEEING YOUNG CHILDREN SUFFER LIKE I

HAVE ALL MY LIFE WHAT YOUR DAUGHTER'S NAME? I'LL ADD HER TO MY PRAYER LIST OF

ALL THE CHILDREN WITH EPILEPSY.ALSO,I SEND OUT SCRIPTURE WOULD YOU LIKE TO BE

ADDED TO RECEIVE MY SCRIPTURE OF THE DAY.I SEND TO LIKE 170 PEOPLE. WHEN YOU

MENTIONED DEPAKOTE,I HAD TO LET YOU KNOW ABOUT THAT PLUS GIVE HER DANDELION

ROOT,IT PROTECTS THE LIVER FROM POISONOUS THINGS.I TAKE MANY HERBS

LAVENDER,VALERIAN,ECHINACEA,ELDERBERRY,GOLDSEAL,DANDELION ROOT AND NETTLE FOR

ALLERGIES AND MANY OTHERS GOD PUT THEM ON EARTH TO HEAL AND PEOPLE NEED TO

REALIZE THAT BUTDR'S DON'T WANT YOU TO USE THEM BECAUSE THEY LOSE MONEY ON

PRESCIPTIONS DRUGS.MAY GOD PLACE HIS HEALING HANDS UPON YOUR DAUGHTER AND HEAL

HER OF EPILEPSY/SEIZURES WITH HIS LOVE AND IN HIS NAME I PRAY SINCERELY,MARK

HOGUE

Traceygrubbs@... wrote:Thanks Mark, actually we are about due for a blood

level check. I think I'll

call the doctor Monday morning and have some labs drawn.

Please tell me me, how long were you on the Depakote and how many mg did you

take? How many times a day?

Thanks,

Sincerely,

Tracey

[Guest guest]

Mark,

You are so kind, I would love to receive the daily scripture and my

daughter's name is .

Unfortunately at this time my hands are tied as far as taking off the

Depakote. We went through what I call hell, 11 months of uncontrolled

seizures. only has nocturnal seizures (sleep cycle related) and we

averaged

between 3-9 seizures per night for a long eleven months. It was the scariest

thing I have ever been through to watch my child have these seizures and there

was

nothing I could do about it. It is hell.

Mark, the dandelion root, how do you administer it?

Thanks for chating with me,

God bless,

sincerely,

Tracey and

[Guest guest]

MAY GOD PLACE HIS HEALING HANDS UPON ASHLEY AND YOURSELF TO TAKE AWAY THE STRESS

OUT OF YOUR HEART,LIFE & MIND MAY HE FILL YOU WITH HIS HOLY SPIRIT AND MAY IT BE

WITH YOU EVERY STEP YOU WALK,WALK IN HIS SPIRIT.I WILL BE PRAYING EVERYDAY THAT

GOD HEALS ASHLEY ASAP/STAT GOD HEAR THESE WORD AND HEAL ASHLEY WIPE THE

EPILEPSY/SEIZURES OUT OF HER BODY HEAR MY VOICE I PRAY IN YOUR NAME

AMEN.LOVE,MARK

Traceygrubbs@... wrote:Mark,

You are so kind, I would love to receive the daily scripture and my

daughter's name is .

Unfortunately at this time my hands are tied as far as taking off the

Depakote. We went through what I call hell, 11 months of uncontrolled

seizures. only has nocturnal seizures (sleep cycle related) and we

averaged

between 3-9 seizures per night for a long eleven months. It was the scariest

thing I have ever been through to watch my child have these seizures and there

was

nothing I could do about it. It is hell.

Mark, the dandelion root, how do you administer it?

Thanks for chating with me,

God bless,

sincerely,

Tracey and

[Guest guest]

Thank you Mark, you would never know how much that means to me.

God bless,

Tracey and

[Guest guest]

Thanks

[Guest guest]

TRACEY,I FORGOT THE DANDELION I WOULD GIVE ASHLEY 2 CAPSULES OF DANDELION ROOT

EVERY DAY BACK WHEN I WAS ON DEPAKOTE NO ONE WAS LOOKING INTO THAT FOR ME I

FOUND OUT ABOUT MY SELF READING MY HERB BOOK .I SO MUCH INTO THEM, I BELIEVE GOD

PUT THEM ON TO HEAL AND IT IS IN MY HEART THAT HE DID.YOU TELL ASHLEY SOMEONE

PRAYING FOR HER EVERYDAY TAKE CARE,MARK HOGUE

Traceygrubbs@... wrote:Mark,

You are so kind, I would love to receive the daily scripture and my

daughter's name is .

Unfortunately at this time my hands are tied as far as taking off the

Depakote. We went through what I call hell, 11 months of uncontrolled

seizures. only has nocturnal seizures (sleep cycle related) and we

averaged

between 3-9 seizures per night for a long eleven months. It was the scariest

thing I have ever been through to watch my child have these seizures and there

was

nothing I could do about it. It is hell.

Mark, the dandelion root, how do you administer it?

Thanks for chating with me,

God bless,

sincerely,

Tracey and

[Guest guest]

Tracey,

Careful with dandelion root. It is a strong dieuretic and is not good

for anyone on depakote. L-carnitine is one of the best protectors

against the liver damage potential possibly caused by Depakote.

In health,

Mark Schauss

www.carbonbased.com

Re: [ ] Zonegran

TRACEY,I FORGOT THE DANDELION I WOULD GIVE ASHLEY 2 CAPSULES OF

DANDELION ROOT EVERY DAY BACK WHEN I WAS ON DEPAKOTE NO ONE WAS LOOKING

INTO THAT FOR ME I FOUND OUT ABOUT MY SELF READING MY HERB BOOK .I SO

MUCH INTO THEM, I BELIEVE GOD PUT THEM ON TO HEAL AND IT IS IN MY HEART

THAT HE DID.YOU TELL ASHLEY SOMEONE PRAYING FOR HER EVERYDAY TAKE

CARE,MARK HOGUE

Traceygrubbs@... wrote:Mark,

You are so kind, I would love to receive the daily scripture and my

daughter's name is .

Unfortunately at this time my hands are tied as far as taking off

the

Depakote. We went through what I call hell, 11 months of uncontrolled

seizures. only has nocturnal seizures (sleep cycle related) and

we averaged

between 3-9 seizures per night for a long eleven months. It was the

scariest

thing I have ever been through to watch my child have these seizures and

there was

nothing I could do about it. It is hell.

Mark, the dandelion root, how do you administer it?

Thanks for chating with me,

God bless,

sincerely,

Tracey and

[Guest guest]

Hi Grace,

My daughter, , has been on Zonegran for ~2yrs now. Zonegran was a

blessing from God to us-no side affects whatsoever, in addition we have good

seizure control. However, we did have what they refer to as the " honeymoon

period "

when we first initiated the treatment, we went three months absolutely seizure

free and then experiencing breakthrough, so we ended up adding Depakote.

Hope this helps.

Tracey

[Guest guest]

Hi Grace,

was averaging 9 seizures a night, every single night for eleven

months. That is why I say the Zonegran was God sent to us.

Initially they started her off on 300mg then we moved up to 400mg and added a

small amount of Depakote. Our honeymoon period lasted a long three months but

I am sure this varies with the individual.

Let me know if you have anymore questions.

Hope this helps,

Tracey

[Guest guest]

Tracey,

How often was having seizures before the Zonegran and what dose

whas she taking? Thank you so much for the info. This is what I am

afraid of that she is in the honeymoon period and that her seizures will

come back. Thanks again!

Grace

On Mon, 8 Mar 2004 07:34:09 EST Traceygrubbs@... writes:

> Hi Grace,

> My daughter, , has been on Zonegran for ~2yrs now. Zonegran

> was a

> blessing from God to us-no side affects whatsoever, in addition we

> have good

> seizure control. However, we did have what they refer to as the

> " honeymoon period "

> when we first initiated the treatment, we went three months

> absolutely seizure

> free and then experiencing breakthrough, so we ended up adding

> Depakote.

> Hope this helps.

> Tracey

>

>

>

[Guest guest]

Grace,

In 's case it has absolutely no side. She is almost a straight A

student. It also has not altered her personality, we had a bad experience with

Topamax, it was a nightmare. My child turned into a deamon.

The only real hassle with Zonegran is that it has to be flushed out of the

kidneys well or it causes stone formation. And I kind of have to fight to

take in her daily fluids. Another precaution they warn you about is that it

hinders persperation, causing the body to overheat. Which kind of scared me a

little, did the Girls on the run thing last summer, so I was afraid she

would overheat but she did well.

I hope your child does well on this med. From what you said it is a very low

dose you are giving and you still can go up if you see breakthrough seizures.

Also, if increasing the Zonegran does not work you can try adding just a tiny

bit of Depakote. I think if I am not mistaken Mark has Tasja on the same

combination and she did well on it.

However, I am a blabber mouth and I will ramble all night long...

God bless and I hope this helps.

Tracey

[Guest guest]

Hi Mark,

Well I just mentioned to Grace that you had Tasya on Zonegran and Depakote

combo. I know the last time we spoke it was controlling her well. I am sorry to

hear that is not working out for you.

How is Tasya doing? Have you linked the seizure activity to anything yet? I

know you mentioned stomach problems...

Good to hear from you. How is that " new " baby doing?

God bless,

Tracey

[Guest guest]

Tracey,

Thanks for the info. I've been hearing alot about Zonegran making some

children act like zombies have you experienced anything like that?

Grace

On Mon, 8 Mar 2004 17:29:12 EST Traceygrubbs@... writes:

> Hi Grace,

> was averaging 9 seizures a night, every single night for

> eleven

> months. That is why I say the Zonegran was God sent to us.

> Initially they started her off on 300mg then we moved up to 400mg

> and added a

> small amount of Depakote. Our honeymoon period lasted a long three

> months but

> I am sure this varies with the individual.

> Let me know if you have anymore questions.

> Hope this helps,

> Tracey

>

>

>

[Guest guest]

Tracey,

We've been on Zonegran with Tasya and did quite well along with her

nutritional support program until she had a couple of atonic drop

seizure at which point we panicked a bit and put her on Depakote. BIG

MISTAKE!!! She deteriorated until her big episode over 2 weeks ago.

She is now off Depakote, on 200 mg Zonegran and 500 mg Keppra and has

been doing fantastic. Nothing for 17 days now and she's got that bounce

back in her step. I am wondering what kind of data is out there on the

interaction between Depakote and Zonegran. Im having problems cathering

strong evidence either way.

In health,

Mark Schauss

www.southwoodresearch.org

Re: [ ] Zonegran

Hi Grace,

was averaging 9 seizures a night, every single night for eleven

months. That is why I say the Zonegran was God sent to us.

Initially they started her off on 300mg then we moved up to 400mg and

added a

small amount of Depakote. Our honeymoon period lasted a long three

months but

I am sure this varies with the individual.

Let me know if you have anymore questions.

Hope this helps,

Tracey

[Guest guest]

Mark,

When I did a search on Zonegran after the neuro put on it and it

stated that some meds interact with Zonegran, but it didn't specifically

state which ones. is taking Zonegran as monotherapy. In your

search, did you by any chance come accross any info that stated that it

could be used as both mono and as an add-on med. I've been hearing

others talk about taking it as an add-on so I was wondering. I did hear

of one other mom who was also using it as mono therapy.

Grace

On Mon, 8 Mar 2004 14:58:15 -0800 " Mark Schauss "

<schauss@...> writes:

> Tracey,

>

> We've been on Zonegran with Tasya and did quite well along with her

> nutritional support program until she had a couple of atonic drop

> seizure at which point we panicked a bit and put her on Depakote.

> BIG

> MISTAKE!!! She deteriorated until her big episode over 2 weeks

> ago.

> She is now off Depakote, on 200 mg Zonegran and 500 mg Keppra and

> has

> been doing fantastic. Nothing for 17 days now and she's got that

> bounce

> back in her step. I am wondering what kind of data is out there on

> the

> interaction between Depakote and Zonegran. Im having problems

> cathering

> strong evidence either way.

>

> In health,

> Mark Schauss

> www.southwoodresearch.org

>

>

> Re: [ ] Zonegran

>

>

> Hi Grace,

> was averaging 9 seizures a night, every single night for

> eleven

> months. That is why I say the Zonegran was God sent to us.

> Initially they started her off on 300mg then we moved up to 400mg

> and

> added a

> small amount of Depakote. Our honeymoon period lasted a long three

> months but

> I am sure this varies with the individual.

> Let me know if you have anymore questions.

> Hope this helps,

> Tracey

>

>

>

>

[Guest guest]

Grace,

I've heard that Zonegran is used primarily as an adjunct to other meds

but I have heard of it being used in monotherapy.

Mark

Re: [ ] Zonegran

>

>

> Hi Grace,

> was averaging 9 seizures a night, every single night for

> eleven

> months. That is why I say the Zonegran was God sent to us.

> Initially they started her off on 300mg then we moved up to 400mg

> and

> added a

> small amount of Depakote. Our honeymoon period lasted a long three

> months but

> I am sure this varies with the individual.

> Let me know if you have anymore questions.

> Hope this helps,

> Tracey

>

>

>

>

[Guest guest]

Thanks Mark, that makes me feel better!

Grace

On Mon, 8 Mar 2004 16:20:03 -0800 " Mark Schauss "

<schauss@...> writes:

> Grace,

>

> I've heard that Zonegran is used primarily as an adjunct to other

> meds

> but I have heard of it being used in monotherapy.

>

> Mark

>

> Re: [ ] Zonegran

> >

> >

> > Hi Grace,

> > was averaging 9 seizures a night, every single night for

> > eleven

> > months. That is why I say the Zonegran was God sent to us.

> > Initially they started her off on 300mg then we moved up to 400mg

>

> > and

> > added a

> > small amount of Depakote. Our honeymoon period lasted a long

> three

> > months but

> > I am sure this varies with the individual.

> > Let me know if you have anymore questions.

> > Hope this helps,

> > Tracey

> >

> >

> >

> >

[Guest guest]

Tracey,

My neuro also told me of the possibility of those two side effects you

mentioned and advised me to make sure that drinks plenty of

fluids which I do and I advised her teacher to do the same. Thanks alot

for the information and for the hope. God Bless!

Grace

On Mon, 8 Mar 2004 19:33:54 EST Traceygrubbs@... writes:

> Grace,

> In 's case it has absolutely no side. She is almost a straight

> A

> student. It also has not altered her personality, we had a bad

> experience with

> Topamax, it was a nightmare. My child turned into a deamon.

> The only real hassle with Zonegran is that it has to be flushed out

> of the

> kidneys well or it causes stone formation. And I kind of have to

> fight to

> take in her daily fluids. Another precaution they warn you about is

> that it

> hinders persperation, causing the body to overheat. Which kind of

> scared me a

> little, did the Girls on the run thing last summer, so I was

> afraid she

> would overheat but she did well.

> I hope your child does well on this med. From what you said it is a

> very low

> dose you are giving and you still can go up if you see breakthrough

> seizures.

> Also, if increasing the Zonegran does not work you can try adding

> just a tiny

> bit of Depakote. I think if I am not mistaken Mark has Tasja on the

> same

> combination and she did well on it.

> However, I am a blabber mouth and I will ramble all night long...

> God bless and I hope this helps.

> Tracey

>

>

>

[Guest guest]

TRACEY YOU NEED TO KEEP A CLOSE CHECK UP WITH DEPOKOTE.ABOUT 25 YEARS AGO IT WAS

DAMAGING MY LIVER AND I HAD TO GET OFF OF IT FAST.AT THAT TIME THE DR. THOUGHT I

WAS DRINKING ALCOHOL BUT I'VE NEVER HAVE HAD ANY USE FOR ALCOHOL AND MY MOTHER

TOLD HIM I NEVER HAD EVEN A BEER BEFORE.

Traceygrubbs@... wrote:Hi Grace,

My daughter, , has been on Zonegran for ~2yrs now. Zonegran was a

blessing from God to us-no side affects whatsoever, in addition we have good

seizure control. However, we did have what they refer to as the " honeymoon

period "

when we first initiated the treatment, we went three months absolutely seizure

free and then experiencing breakthrough, so we ended up adding Depakote.

Hope this helps.

Tracey

[Guest guest]

Hi Mark,

I am aware that Depakote is metabolized by the liver and therefore can damage

it but it is not like we go into a drug store and say give me the drug that

will damage my liver the most. Back when went on Depakote she was having

a significant amount of seizures...

Long story, however, we are scheduled for an EEG overnight monitoring next

month so hopefully soon we can change the drug.

Thanks for your concern, it means a lot to know someone cares,

God bless,

Tracey