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Dear Marie:

thank you for being so forthcoming... currently am getting

estrogen/testosterone by injection to not pack the liver (as i'm obese,

doctor felt oral would just get to the liver and sit, by injection it would

have a greater chance of getting passed through the system)... and am on

very very low doses of one antidepressant and one anti-anxiety... but as

i'm feeling " bloated, " and uncomfortable (have been for a while) i'm a tad

panicked about what i'm putting in, to not complicate an already diseased

liver. thought tomorrow i would call the gastroenterologist office, and

perhaps the nurse can help (my regular Family Practice physician is out of

town until monday)...

and have begun a list of toxins exposed to... because technically,

from what i read, i'm showing signs a bit early in the game... but i've

tested positive for Hep B antigens for at least 5 years now... so perhaps

my liver was already a bit " gamey " ...

i do so appreciate all of you, virtual strangers, who've sent me

such kind words... as a mother of a pack of relatively young kids (7, 10,

12, 14) and no family, no companion, i'm walking this alone... and am

rather panicked about the unknown. one thing i cling to is that before

yesterday, my future was unknown then as well. so, not much has changed,

but a dragon has been included in my present.

Feisty by Nature

Trinity

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Dear Trinity,

My husband was diagnosed and treated for Hep c last year. We thought all

was well but...his remission has ended. We haven't yet decided whether to

resume the interferon or not. The combo treatment isn't good for him

because his white blood cell count got so low with the interferon that that

doctor fears heart failure. His viral load(?) was 600,000 the first time

around and we don't know what it is right now. We see a new doc in

February. You might want to find out about some herbs and such. We keep

hearing about milk thistle being a good thing for the liver...NOT a cure

but not a harm either. Take care.

Sincerely,

Carolee

----------

From: Trinity[sMTP:phoenix@...]

Sent: Thursday, January 14, 1999 9:50 PM

Hepatitis Conelist

Subject: Re: medications

From: Trinity <phoenix@...>

Dear Marie:

thank you for being so forthcoming... currently am getting

estrogen/testosterone by injection to not pack the liver (as i'm obese,

doctor felt oral would just get to the liver and sit, by injection it would

have a greater chance of getting passed through the system)... and am on

very very low doses of one antidepressant and one anti-anxiety... but as

i'm feeling " bloated, " and uncomfortable (have been for a while) i'm a tad

panicked about what i'm putting in, to not complicate an already diseased

liver. thought tomorrow i would call the gastroenterologist office, and

perhaps the nurse can help (my regular Family Practice physician is out of

town until monday)...

and have begun a list of toxins exposed to... because technically,

from what i read, i'm showing signs a bit early in the game... but i've

tested positive for Hep B antigens for at least 5 years now... so perhaps

my liver was already a bit " gamey " ...

i do so appreciate all of you, virtual strangers, who've sent me

such kind words... as a mother of a pack of relatively young kids (7, 10,

12, 14) and no family, no companion, i'm walking this alone... and am

rather panicked about the unknown. one thing i cling to is that before

yesterday, my future was unknown then as well. so, not much has changed,

but a dragon has been included in my present.

Feisty by Nature

Trinity

------------------------------------------------------------------------

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Hi Carolee,

My viral load was 560,000 two years ago when I first found out I had it.

(that's after having it for 20 years). That's not too bad since some people

have their numbers in the millions.

I agree, that Milk Thistle helps protect the liver, if not directly for the

Hep C, it may work on other toxins that go to you liver.

I take one a day, some people take 2 or 3.

My red blood cell count went low with the interferon too, so I don't think I

want to try the combination treatment.

Take care,

Marie

At 01:17 AM 1/15/99 -0500, you wrote:

>From: Cherry 2000 <cherry2000@...>

>

>Dear Trinity,

> My husband was diagnosed and treated for Hep c last year. We thought all

>was well but...his remission has ended. We haven't yet decided whether to

>resume the interferon or not. The combo treatment isn't good for him

>because his white blood cell count got so low with the interferon that that

>doctor fears heart failure. His viral load(?) was 600,000 the first time

>around and we don't know what it is right now. We see a new doc in

>February. You might want to find out about some herbs and such. We keep

>hearing about milk thistle being a good thing for the liver...NOT a cure

>but not a harm either. Take care.

> Sincerely,

> Carolee

>

>----------

>From: Trinity[sMTP:phoenix@...]

>Sent: Thursday, January 14, 1999 9:50 PM

> Hepatitis Conelist

>Subject: Re: medications

>

>From: Trinity <phoenix@...>

>

>Dear Marie:

> thank you for being so forthcoming... currently am getting

>estrogen/testosterone by injection to not pack the liver (as i'm obese,

>doctor felt oral would just get to the liver and sit, by injection it would

>have a greater chance of getting passed through the system)... and am on

>very very low doses of one antidepressant and one anti-anxiety... but as

>i'm feeling " bloated, " and uncomfortable (have been for a while) i'm a tad

>panicked about what i'm putting in, to not complicate an already diseased

>liver. thought tomorrow i would call the gastroenterologist office, and

>perhaps the nurse can help (my regular Family Practice physician is out of

>town until monday)...

> and have begun a list of toxins exposed to... because technically,

>from what i read, i'm showing signs a bit early in the game... but i've

>tested positive for Hep B antigens for at least 5 years now... so perhaps

>my liver was already a bit " gamey " ...

>

> i do so appreciate all of you, virtual strangers, who've sent me

>such kind words... as a mother of a pack of relatively young kids (7, 10,

>12, 14) and no family, no companion, i'm walking this alone... and am

>rather panicked about the unknown. one thing i cling to is that before

>yesterday, my future was unknown then as well. so, not much has changed,

>but a dragon has been included in my present.

>

> Feisty by Nature

>

> Trinity

>

>

>

>------------------------------------------------------------------------

>

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Hi Trinity,

Don't feel lonely, we're all here for each other. Good luck with your doctor

appointments.

It must be difficult having young children to care for, when it's hard to

care for yourself. Thank God, mine are both in their mid-20s and on their own.

Marie

At 09:50 PM 1/14/99 -0500, you wrote:

>From: Trinity <phoenix@...>

>

>Dear Marie:

> thank you for being so forthcoming... currently am getting

>estrogen/testosterone by injection to not pack the liver (as i'm obese,

>doctor felt oral would just get to the liver and sit, by injection it would

>have a greater chance of getting passed through the system)... and am on

>very very low doses of one antidepressant and one anti-anxiety... but as

>i'm feeling " bloated, " and uncomfortable (have been for a while) i'm a tad

>panicked about what i'm putting in, to not complicate an already diseased

>liver. thought tomorrow i would call the gastroenterologist office, and

>perhaps the nurse can help (my regular Family Practice physician is out of

>town until monday)...

> and have begun a list of toxins exposed to... because technically,

>from what i read, i'm showing signs a bit early in the game... but i've

>tested positive for Hep B antigens for at least 5 years now... so perhaps

>my liver was already a bit " gamey " ...

>

> i do so appreciate all of you, virtual strangers, who've sent me

>such kind words... as a mother of a pack of relatively young kids (7, 10,

>12, 14) and no family, no companion, i'm walking this alone... and am

>rather panicked about the unknown. one thing i cling to is that before

>yesterday, my future was unknown then as well. so, not much has changed,

>but a dragon has been included in my present.

>

> Feisty by Nature

>

> Trinity

>

>

>

>------------------------------------------------------------------------

>

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  • 1 year later...
Guest guest

Every once in a while, I wonder what Ian would be like without any

medication at all. Then I remember January of 1998, when we tried to

decrease his clonidine (catapres patch) and I grew grey hairs.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

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  • 1 month later...
Guest guest

In a message dated 4/28/00 4:09:15 AM Mountain Daylight Time,

jellybean@... writes:

<< She also was diagnosed with Sensory Intergration disorder in February and

is very tactile defensive...She has only one dress that she will wear and

thats only if she absolutely has to.. I am very grateful to have found this

list and look forward to hearing information from others.. Take care

Tammy

>>

My daughter, Leigh, age 12, was also diagnosed a couple months ago with

Sensory Integration disorder.

Jay in Colorado

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  • 3 months later...

Hello -

Sorry it's taken me so long to reply to this posting. I have not heard of

this medication before and just did a brief bit of research on WebMd to find

that it is in a group of drugs called " cholinergics " and is most often

prescribed for urinary conditions as it promotes emptying of the bladder. I

guess the logic is that it could also help empty the esophagus?? There is a

good article available at www.aalaparoscopic-surgery.com/achalasi.htm which

discusses some pharmacologic therapy and in it they list a group of

medications called " anticholinergics " which leads me to believe that doctors

are prescribing something quite opposite from the drug your are taking. I

think the medication most often prescribed is nifedipine and I've read

several postings from e-group members who have taken this medication but

I've never used it personally.

Would be interested to know how this medication is, in fact, working out for

you?

Take care -

Carol

medications

> My physician just prescribed urecholine 25mg/ before meals. Has

> anyone tried this?

>

>

>

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> Make new friends, find the old at Classmates.com:

> 1/7075/13/_/24373/_/964328586/

> ------------------------------------------------------------------------

>

>

>

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  • 1 month later...

HI there Barbara in Texas!

We also found that none of the regular medications worked for our sons'

ocd and depression. He was diagnosed at 12 and began treatment at 13. He is

17 now. For a long time Manerix worked, and now he's on anafranil for his

ocd and serzone for the depression for about a year. His depression is

definatly under control and his O's and C's are not as dispruptive!

My youngest, Ziv (11), began medication at 7 and it definatly frightened

me to see a child on a high adult dose of the SSRI's. I have learned to use

therapy as a way of limiting the amount of medication.

Someone mentioned Valarian Root for insomnia. The smelly rubber boot

tea??? Just kidding. We tried it for tom and it did nothing. A few drops of

Lavender on Tom's pillow have helped him relax, though. Ziv takes zoloft

with a trazadone at night to help sleep.

We're glad that you found this list too!!

take care, wendy, in canada

===============================================

On another note, just thought I'd give ya'll my two cents worth on drugs.

My son has been on every single SSRI on the market a well

as Luvox 200 mgs per day. None of them have worked for him. The Luvox

increased his anxiety incredibly so we had titrate him off

of it. Luckily, his psychiatrist is also so wonderful. On his last

appointment she told me that we had tried all that there is to try and

so she was going to put him on Serzone, a drug that has not been approved or

tested on children. It scared me to death but ...

thankfully, it's working great.

Glad to have found this list!

Barbara

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,

My son is also in Cognitive therapy. It has made the difference in night

and day with his OC. I like your idea about lavender..I think I'll give

that a try. Even with massive doses of drugs, Keaton has trouble going to

sleep, fights it like its the plague! Keaton tried the Anafranil and

Trazodone too. I swear, my medicine cabinet looked like a pharmacist. We

tried Celexa too....didn't work for him but it sure is working good for

me!!!!

Barbara

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Just thought I'd chime in on this one, my 10yr old daughter also

suffered from bad insomnia as a result of side effects from meds. I read on

this list about the lavendar oil and off the the herb shop we went. It worked

wonders for her. She is off meds now and doesnt have the problem but she

still feels calm and relaxed by the lavendar so she still uses it. She too

was given other meds that were " supposed " to help the insomnia but only

exacerbated the problem. Good luck with the lavendar oil. p.s. her room

smells pretty good too!! God Bless!! Nikki in O'town

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  • 4 months later...

**My Apologies** For Mixing Your Names Up!!! In my haste to communicate with

someone who's " been there " , I made a booboo. Really sorry. I'm not that

computer-wise. But thanks for your responses!! Terri.

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  • 1 month later...
Guest guest

Deb,

Is taking any other meds besides Depakote? takes Tegretol and

Depakene and the more Tegretol he takes makes the Depakene level go down.

Terry

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Guest guest

Hi Deb,

currently takes Tegretol, Depakene, Risperdal, Zyprexa, Prevacid,

Synthroid, Amoxicillin (as a prophylactic for GI bacterial overgrowth), Milk

of Magnesia and Colace daily! When I take him for a doctor visit, I take a

typed list of med, amounts, and times! LOL He has been on [in the past]

Clonidine (pill/patch), Ritilin, Anafranil, Lithium, Prozac, Paxil, Zoloft,

Klonipen, and I can't remember what else. He has been on the

Tegretol/Depakene for about 6 years. They were originally prescribed for

seizure control and have been adjusted upwards for behavioral control as

well. He still has occasional seizures. He has been on really high doses of

both Tegretol and Depakene and they worked against each other, level wise.

At one point, we were trying to wean him off the Tegretol (big mistake!) and

his Depakene level went up to 155. He was doing alot of sleeping. I'm not

sure if any of the meds is taking interact with Depakote, but it might

be worth a discussion with your pharmacist to find out? Also, one of my

other kids used to take Theodur, which was a sprinkle med for asthma. He

used to have to take really high doses of it because the doctor said his

metabolism was so high that he didn't absorb all the sprinkles before they

had passed through his system. Just a thought. takes the liquid

form and doesn't seem to have any problem metabolizing it, but I give it

through his g-tube so volume and/or taste isn't an issue. From what I hear,

liquid Valproic Acid is some nasty tasting stuff! LOL

A side note....we started noticing an increase in aggressive behavior when

was 12 1/2 - 13 yrs. We asked our neurologist at that time if it

could be related to puberty. He said no. I think he was wrong. is

now 14 and his psychiatrist says the older he gets, the worse it's likely to

be. So I do think that puberty has an influence.

Terry

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Guest guest

Hi ,

Have you ever experienced blood levels to go down with

an increase in dose?

Deb

--- Scherbert <Scherb@...> wrote:

> Deb, you just called my name. What do you want to

> know?

> & Garry, parents of (10 ds), (9

> ds), JJ (7

> ds/autism/celiac), (6 ds/ADHD/Celiac), and

> Esther (4 ds). All adopted.

>

>

> ----------

> >From: skrapido@...

> >

> >Subject: medications

> >Date: Wed, Apr 4, 2001, 8:10 AM

> >

>

> >does anyone have experience with depakote sprinkle?

> >

> >deb

> >

> >

> >

> > Checkout our homepage for files,

> bookmarks, and photos of our

> >kids. Share favorite bookmarks, ideas, and other

> information by including

> >them. Don't forget, messages are a permanent record

> of the archives for our list.

> >

> >

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Guest guest

,

He is on this for behavior also. On the same dose for 4 1/2 years.

Weight when started about 115. Now, 172. I know the DS population

can metabolize things differently than others. Maybe that is it.

His liver is eating it like PacMan. His level was 69 and the doc

decided to up the dose. Now, it only went down by 4 or 5 points, but

it went down. We balked at uping the level again....then she decided

we didn't need her services if we did not want to do " med trials " .

Geez. I hate docs.

Deb

> >> Deb, you just called my name. What do you want to

> >> know?

> >> & Garry, parents of (10 ds), (9

> >> ds), JJ (7

> >> ds/autism/celiac), (6 ds/ADHD/Celiac), and

> >> Esther (4 ds). All adopted.

> >>

> >>

> >> ----------

> >> >From: skrapido@y...

> >> >@y...

> >> >Subject: medications

> >> >Date: Wed, Apr 4, 2001, 8:10 AM

> >> >

> >>

> >> >does anyone have experience with depakote sprinkle?

> >> >

> >> >deb

> >> >

> >> >

> >> >

> >> > Checkout our homepage for files,

> >> bookmarks, and photos of our

> >> >kids. Share favorite bookmarks, ideas, and other

> >> information by including

> >> >them. Don't forget, messages are a permanent record

> >> of the archives for our list.

> >> >

> >> >

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Guest guest

Deb, you just called my name. What do you want to know?

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: skrapido@...

>

>Subject: medications

>Date: Wed, Apr 4, 2001, 8:10 AM

>

>does anyone have experience with depakote sprinkle?

>

>deb

>

>

>

> Checkout our homepage for files, bookmarks, and photos of our

>kids. Share favorite bookmarks, ideas, and other information by including

>them. Don't forget, messages are a permanent record of the archives for our

list.

>

>

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Guest guest

Wow, that's different! No, and JJ 's level is 74(on a scale of

50-125normal) and he takes 2250mg per day. We are using it for behavior

control(isn't working well anymore) not seizure control. He has a ppt. next

week with a new doctor. Perhaps someone else on the list could help, there

are other who are/have been on depakote.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: skrapido <skrapido@...>

>

>Subject: Re: medications

>Date: Wed, Apr 4, 2001, 8:49 AM

>

>Hi ,

>

>Have you ever experienced blood levels to go down with

>an increase in dose?

>

>Deb

>

>--- Scherbert <Scherb@...> wrote:

>> Deb, you just called my name. What do you want to

>> know?

>> & Garry, parents of (10 ds), (9

>> ds), JJ (7

>> ds/autism/celiac), (6 ds/ADHD/Celiac), and

>> Esther (4 ds). All adopted.

>>

>>

>> ----------

>> >From: skrapido@...

>> >

>> >Subject: medications

>> >Date: Wed, Apr 4, 2001, 8:10 AM

>> >

>>

>> >does anyone have experience with depakote sprinkle?

>> >

>> >deb

>> >

>> >

>> >

>> > Checkout our homepage for files,

>> bookmarks, and photos of our

>> >kids. Share favorite bookmarks, ideas, and other

>> information by including

>> >them. Don't forget, messages are a permanent record

>> of the archives for our list.

>> >

>> >

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Guest guest

Deb, That is terrible about the doctor. I would look at another dr if that

is available to you. We have to travel 3 1/2 hours to find one who seems

compotent.(sp?) I don't think JJ liver is eating the meds he is just

pooping it out 30 minutes after getting it. We have a co-pay on the

depekote of about $50, but I still feel that I am thowing my money away with

the diapers. Also it is just doing a number on his bottom. Poor guy! JJ

lost 10 pounds but it was more from starting the GF diet than the meds. He

is still a scrawny 43 lb.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: skrapido@...

>

>Subject: Re: medications

>Date: Wed, Apr 4, 2001, 9:18 AM

>

>,

>

>He is on this for behavior also. On the same dose for 4 1/2 years.

>Weight when started about 115. Now, 172. I know the DS population

>can metabolize things differently than others. Maybe that is it.

>His liver is eating it like PacMan. His level was 69 and the doc

>decided to up the dose. Now, it only went down by 4 or 5 points, but

>it went down. We balked at uping the level again....then she decided

>we didn't need her services if we did not want to do " med trials " .

>

>Geez. I hate docs.

>

>Deb

>

>> >> Deb, you just called my name. What do you want to

>> >> know?

>> >> & Garry, parents of (10 ds), (9

>> >> ds), JJ (7

>> >> ds/autism/celiac), (6 ds/ADHD/Celiac), and

>> >> Esther (4 ds). All adopted.

>> >>

>> >>

>> >> ----------

>> >> >From: skrapido@y...

>> >> >@y...

>> >> >Subject: medications

>> >> >Date: Wed, Apr 4, 2001, 8:10 AM

>> >> >

>> >>

>> >> >does anyone have experience with depakote sprinkle?

>> >> >

>> >> >deb

>> >> >

>> >> >

>> >> >

>> >> > Checkout our homepage for files,

>> >> bookmarks, and photos of our

>> >> >kids. Share favorite bookmarks, ideas, and other

>> >> information by including

>> >> >them. Don't forget, messages are a permanent record

>> >> of the archives for our list.

>> >> >

>> >> >

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Guest guest

> Deb,

> Is taking any other meds besides Depakote? takes

Tegretol and

> Depakene and the more Tegretol he takes makes the Depakene level go

down.

> Terry

>

Hi Terry,

Where do I start? He takes catapres for the ADHD. Depakote sprinkle

for the mood disorder and 'rage attacks', synthroid, reglan syrup and

prevacid. In the past we tried ritalin, cylert and adderal, all

which gave the reverse effect desired. In august, this doc decided

to switch him from catapres to tenex. That was a disaster, so we

switched him back.

I am wondering if testosterone has anything to do with it. He is 13

and in puberty.

Deb

>

>

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Guest guest

Deb,

My son Brook was on Depakote sprinkles for years and years since he was 17

months until he was alsmost 7 years and then again last year until we swithed

him over to Lamictal. What do you want to know about it? I think I have a

lot of info on side effects, etc.

Marisa

Mom to Miles 14, Brook 11, Geneveive 3

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Guest guest

Deb,

My son Brook was on Depakote sprinkles for years and years since he was 17

months until he was alsmost 7 years and then again last year until we swithed

him over to Lamictal. What do you want to know about it? I think I have a

lot of info on side effects, etc.

Marisa

Mom to Miles 14, Brook 11, Geneveive 3

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Guest guest

Deb,

At first we tried Brook on Tegretol and it really turned him into a

totally spaced out kid, he was on a very high toxic dose we later learned and

it didn't help at all with the seizures. Next, when Brook was very small we

had him on depakote and we raised the dose to stop his myoclonic seizures and

he actually started having more seizures than on a lower dose. His neuro

wanted to raise it even more but I didn't because I was afraid he would have

even more seizures so we lowered it and for a little while he was better and

then he started having more seizures. So finally we started raising it very

slowly and then the seizures went away for about a week until he started

havning petit mal ones and we raised it again and then the seizures stopped.

It was all extremely confusing and we went to a different neuro who didn't

really know why that was going on. We had a lot of studies on Depakote and

different types of problems but the neuro still wasn't sure what happened.

She also made sure that we always gave Brook a supplement called Carnitor

because depakote can make you carnitore deficient which leads to a bunch of

other problems. If you want more info on Carnitor let me know. As for the

blood levels his were fine I believe, but we weren't doing then that

frequently. Maybe every six months and then once a year.

Marisa

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Guest guest

Deb,

At first we tried Brook on Tegretol and it really turned him into a

totally spaced out kid, he was on a very high toxic dose we later learned and

it didn't help at all with the seizures. Next, when Brook was very small we

had him on depakote and we raised the dose to stop his myoclonic seizures and

he actually started having more seizures than on a lower dose. His neuro

wanted to raise it even more but I didn't because I was afraid he would have

even more seizures so we lowered it and for a little while he was better and

then he started having more seizures. So finally we started raising it very

slowly and then the seizures went away for about a week until he started

havning petit mal ones and we raised it again and then the seizures stopped.

It was all extremely confusing and we went to a different neuro who didn't

really know why that was going on. We had a lot of studies on Depakote and

different types of problems but the neuro still wasn't sure what happened.

She also made sure that we always gave Brook a supplement called Carnitor

because depakote can make you carnitore deficient which leads to a bunch of

other problems. If you want more info on Carnitor let me know. As for the

blood levels his were fine I believe, but we weren't doing then that

frequently. Maybe every six months and then once a year.

Marisa

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Guest guest

Hi Marisa,

The question was have you ever experienced the

depakote blood levels go down after raising the

depakote dose?

Deb

--- poggim@... wrote:

> Deb,

> My son Brook was on Depakote sprinkles for years

> and years since he was 17

> months until he was alsmost 7 years and then again

> last year until we swithed

> him over to Lamictal. What do you want to know

> about it? I think I have a

> lot of info on side effects, etc.

> Marisa

> Mom to Miles 14, Brook 11, Geneveive 3

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

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