depakote

[Guest guest]

We had an opportunity to enroll our daughter in that same study last

Fall. We opted against it for a number of reasons. Parents of SMA

children have discussed this at length in other SMA Forums. Some

people are very optimistic and have eagerly enrolled their SMA-

afflicted kids in the study. Others (like myself) have pointed out

certain negative aspects and unknowns about administering Depakote in

small doses (especially to very young children).

I have immense respect for Dr. Swoboda, and I truly believe she is

doing valuable work. However, my personal experience is that many

people involved in the Depakote study are too willing to ignore the

risks because of the small promise of seeing their child walk.

Please make an informed decision. That's all I am saying.

Jerry

> my neurologist, kathryn swoboda enrolled me in the drug trial

recently.  i

> have to take depakote 2 times a day via gtube, and have my blood

checked every

> so often--to make sure there are no side effects.  she also does a

muscle test

> to see how many motor neurons respond which indicates the amount of

strength

> you have in numbers.  so far my numbers have remained stable in the

last year.

> what the depakote may do is increase the numbers---or keep them

stable for a

> long time instead of decreasing--or do nothing.  no one knows. it

will take

> atleast 6 months to see a difference--if there is one. ill keep you

all updated

> in how it goes. i think it is interesting!

> -

>

>

>

[Guest guest]

I would just like to add that I am one of those parents that have opted

to have my child in the study. I do not have my child in the study just

so I can see him walk as I don't think that will ever happen. I have him

involved in the study because how we will ever know if there is

something to help our kids if every one chooses to stay on the safe side

and not see what might help. For everything there is side effects and

possible problems. I mean just for an example, birth control pills can

cause cancer and blood clotting but look how many people take it.

My brother in law was on depakote for quiet a few years and he was on

a higher dose than my son will ever be on. From all the research I have

done the bad side effects and the serious problems are when the doses

are extremely high and when the person is not monitored effectively and

correctly. I don't know if this will make my son stronger or make no

change at all but I know that there is a lot of medicine out there that

would not be here today if there was not being willing to risk it by

trying it. My husband and I talked about this at lengths and talked to

Dr Swoboda and asked her a million questions and I feel it is safe

enough to put my son on it, if it were not I would not do it. I respect

other people's decisions in not enrolling their kids as that is there

decision and that is great for them. I just would like the same respect

for my decisions and not have some one assume it is because I want my

son to walk so bad that I would risk his life for a small chance it

could happen. I am not expecting that out of this drug at all and have

never been told that is one of the things I should look forward to. I

was actually told that it is more of an inside change that could

stabilize him and help him keep what little strength he has.

I say all this not to upset any one. I say it to let others know that

I am not doing it for a selfish reason to just see my son walk. I am

doing it to see if this will help others with this same disease.

Kenya

Re: depakote

* We had an opportunity to enroll our daughter in that same study

last

Fall. We opted against it for a number of reasons. Parents of SMA

children have discussed this at length in other SMA Forums. Some

people are very optimistic and have eagerly enrolled their SMA-

afflicted kids in the study. Others (like myself) have pointed out

certain negative aspects and unknowns about administering Depakote in

small doses (especially to very young children).

I have immense respect for Dr. Swoboda, and I truly believe she is

doing valuable work. However, my personal experience is that many

people involved in the Depakote study are too willing to ignore the

risks because of the small promise of seeing their child walk.

Please make an informed decision. That's all I am saying.

Jerry

[Guest guest]

jessica and i chatted about the pros and cons of this med. i was bothered

that dr. swoboda told her that patients emotionally felt better as a side

affect of taking the drug. it seems that if those patients weren't feeling

emotionally very good, maybe that issue should be addressed from a mental

health perspective before they enter the trial, or at least as a component

of the trial. as a disability advocate i see many people with physical

disabilities being treated only for the physical issues even when there are

obvious signs of depression, mania, anxiety, dissociation, etc. i'm not

sure if i would be willing to do it. i felt like such a guinea pig growing

being poked, prodded and stared at in the MDA clinics by wide-eyed med.

students.

also, it's interesting to me that these studies aren't being done on adults

who are less likely to be developmentally harmed by the drugs, and better

equipped to give consent for themselves. is it that " cure the children " is

more fundable? jessica...you're 20? 21? how did you get in it? and i

wish swoboda was as quick to address your respiratory needs as she was to

getting you in her trial. it scares me.

alana

[Guest guest]

They are doing the drug trial on kids as it is then that most likely

improvements can be made in the SMA stuff. The does is very very low to

start out with and it is watched very carefully by blood work. It is not

just kids on it either there are a few adults on it and older kids it is

a variety. This trail is to show the amount that is safe. It is a tough

choice but I think instead of cutting down the people that are trying to

help find a treatment or possible cure we should support what is being

done. I know for one Dr Swoboda is a neurologist not a respiratory

doctor so her field of experience is in neurology. She has helped my son

immensely since we met her but she cant answer all of my questions.

On top of all of this depakote is used for a number of things, to

treat seizures, to help migraines, for depression and such as well so I

am sure there is going to be a positive mood lift with it. We were told

to report any mood changes and such as well.

Kenya

[Guest guest]

You don't have your son in the study because you are desperately hoping he

will one day all of a sudden get up a start running around like a chicken w/his

head cut off. Maybe people hope for too much and then get mad and blame it on

the drug that nothing changed. If you dont take chances, you might as well lay

in bed and do nothing while screaming 'nothing is going to cure me.' Depakote

most likely isnt going to hurt any of us faster than pneumonia can. If it

atleast makes me swallow better, I sure as hell will take it.

-

[Guest guest]

I think the part that everyone is missing is that most parents would be

willing to do just about anything to help their children. It's painful

to watch the frustrations that Jordan goes through on a daily basis, and

to watch him lose functionality with each passing year. I dreaded the

day he would not be able to play catch with a wiffle ball, and now I've

experienced it and can hardly believe he can't lift his elbows off his

arm rest anymore. I've been praying for years for a drug that will even

just stabilize the condition, so if it does that I will rejoice in the

victory because it will be a huge step! I absolutely understand why a

parent would enroll a child in these trials, and respect those who have

taken the step, specifically because their participation may be able to

benefit many, many people including my son. I think it is especially

enticing for those who are in greatest danger of failed health because

time is a factor (a factor for all but even more so depending upon the

severity of health struggles). When Jordan was first diagnosed 13 years

ago, we would have quickly jumped at an opportunity like this because we

were desperate to change the course of the disease. However, we have

personally not pursued participating in these trials because we are more

comfortable with the disease all these years later, and since these are

the first generation of drug trials for the disease. Perhaps we would

consider a future trial depending upon the promise.

Jay

Re: Re: depakote

jessica and i chatted about the pros and cons of this med. i was

bothered

that dr. swoboda told her that patients emotionally felt better as a

side

affect of taking the drug. it seems that if those patients weren't

feeling

emotionally very good, maybe that issue should be addressed from a

mental

health perspective before they enter the trial, or at least as a

component

of the trial. as a disability advocate i see many people with physical

disabilities being treated only for the physical issues even when there

are

obvious signs of depression, mania, anxiety, dissociation, etc. i'm not

sure if i would be willing to do it. i felt like such a guinea pig

growing

being poked, prodded and stared at in the MDA clinics by wide-eyed med.

students.

also, it's interesting to me that these studies aren't being done on

adults

who are less likely to be developmentally harmed by the drugs, and

better

equipped to give consent for themselves. is it that " cure the children "

is

more fundable? jessica...you're 20? 21? how did you get in it? and i

wish swoboda was as quick to address your respiratory needs as she was

to

getting you in her trial. it scares me.

alana

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[Guest guest]

i dont think people were going into the study depressed. and if they

were--she didnt mean it was because of the depakote that all of a sudden all

their

cares and burdons have been taken away. she just meant......somehow they feel

better. i doubt depakote is going to harm me any worse than pneumonia. heck, i

could choke and die tomorrow. someone has to test these drugs, i made a

concious decision before i enrolled. i dont plan on walking--ever. but if these

drugs make me cough harder-swallow better--stop the progression, then i sure as

hell am going to take it.

maybe they do children more because it can probably help them more in the

long run, or even stop it. who knows.

dr swoboda has addressed my pulmonary issues. my pulmonologist wouldnt

because hes wimpy and 'isnt comfortable w/what dr bach said to do.'

-

[Guest guest]

I did make an informed decision, otherwise I wouldnt be enrolled. I dont

believe depakote will hurt me any faster than a case of pneumonia. someone has

to

test these drugs. i dont plan on walking but if it makes me swallow better, i

sure as hell will take it.

-

[Guest guest]

I want to be clear...I'm not critical at all about ppl choosing to participate

in this or any number of studies. I wouldn't be here today if others hadn't

done so before me. I'm only frustrated by the gaps in our care and how

researchers are often in the best position to identify the gaps, but the system

isn't set up for them or most other health care providers to connect the dots.

As a professional advocate, I can barely connect my own dots. You parents are

incredible...especially those who are new to all of this.

Alana

[Guest guest]

Where would I be able to find information on specifically why depakote

is one of the chosen drugs to test on SMA patients? For those of you

in the study, were you given this information (either medical

definition or layman's terms?) I don't understand what it is about

THIS drug they are looking at to find answers for SMA. And if there is

something specific to medical answers and this drug, would similar

drugs that are related to it work as well (under the proposed

hypothesis)? The reason I'm curious is because I take a prescribed

drug related to depakote and I can't see to find too many difference

in the drugs chemically nor within their original purposes. Any

information?

Thanks,

Kendra

[Guest guest]

well said.

. . .. . .

" Talkin' the talk, rollin' the walk'

[Guest guest]

How would we have known what to use to fight infections if antibotics

were not tested? How would have known that given vaccines in early

childhood would wipe out such diseases as small pox if vaccines were

not tested? We have been testing various drugs throughout our

history. A lot of us would probably not be here today if not for the

drugs that were developed and tested on various illnesses. We are

eager to have in a drug safety study. We know it may or

may not help her but we will never know unless we try. We, like so

many others are eagerly waiting on the current stage of the trials

are complete so there may be a potentional treatment for in

the near future. Thanks to all who are or will be participating in

the research.

Doddie

Mother to , SMA I/II, 9 months old

> I did make an informed decision, otherwise I wouldnt be enrolled.

I dont

> believe depakote will hurt me any faster than a case of pneumonia.

someone has to

> test these drugs. i dont plan on walking but if it makes me swallow

better, i

> sure as hell will take it.

>

> -

>

>

>

[Guest guest]

I have several friends whose SMA-afflicted children are involved in

the depakote study, and I have spoken with a few others others who

are also participating. I can tell you that this is a highly

sensitive issue, and people frequently get quite hostile when talking

about it. I can respect either decision, but I am convinced that many

parents who enroll their kids in the study don't fully appreciate the

risks. I feel the consent and waiver forms they sign are not

completely explained to them.

All were assured that the study is safe. All were told there is a

possibility (but no guarantee) that their child's condition will

improve. Only one family that I know of was told that there are

prominent Neurologists and researchers who disagree with Dr. Swoboda

about the safety giving low doses of depakote to very young

children. After discovering this information, I know two families

who have pulled out of the study.

It's your individual responsibility to weigh the risks. I can only

tell how we made our decision. I spoke with 3 doctors where I work,

a Psychiatrist, and 2 Neurologists. All of them stressed that the

effect of a mood-altering drug like depakote on a child under age 5

is a big unknown. The supposed safety of depakote is based on tests

made only on adults.

My daughter cannot sit up, rollover, reach above her head nor walk.

But, her mind is as sharp as a razor, and her personality shines like

the sun! I decided not to give her a mood-altering drug that has a

small chance of changing the best thing she has going for her. Your

decision may be different and I respect that. I only say that you

should make sure you are told ALL of the RISKS.

Jerry

[Guest guest]

>From my understanding and self research I found that it should not be

given to kids under the age of 2 because of the high risks involved. I

haven't found any info saying under the age of 5. I understand your

concern but can you include some of the research you have read and also

some people that maybe we can talk to so we can get more opinions on

this. I would love to talk to some of the other doctors and such that

don't agree with Dr Swoboda if they are willing to talk to me. What I

don't understand is that the end of last year researchers from all over

came for the study and it is not just Dr Swoboda that is doing these

trials they are going to be in a few other facilities as well. It is was

that bad for our kids why would other facilities be willing to put kids

at risk? I love my son and I do appreciate all the risks involved, I

know that there can be complications or even worse death. I understand

this but I also know he is going to be monitored closely and if there

are reactions we can take him off no biggy. That is what this is for,

safety levels. They are not going to be just dosing him up and then

waiting to see if he dies to see if that was to much. He will have blood

tests taken, he will monitored and I for one am going to be keeping a

diary of what is going on. This drug as been proven to help SMA so why

have this med that could stabilize our kids maybe and not test it. Where

would the world be if every one was so afraid? I know it is not the

choice for every one but I don't appreciate the fact that people think

that I am just putting my child in there with false hopes and no

information.

I ask please if you want to help us parents be informed get us the

people that we can talk to. I would love to see what others think about

this.

Kenya

[Guest guest]

Can adults get in this study? Somebody mentioned it helped with

swallowing. That'd be a big plus. Does it have adverse effects on the

lungs? Sorry for so many uninformed questions...

--

Jenn Malatesta

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

My web page: http://www.isoc.net/brokeninside/nekrosys/

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

Philo of andria:

" Be kind, for everyone you meet is fighting a great battle. "

[Guest guest]

Hi Marie,

I take 750mg of Depakote daily. It totally prevents the migraines,

because if I forget to take it, I get one. It DOES cause weight gain. My

neurologist told me it would. I heard about Topomax recently. Did it work well

for you?

What dosage are you taking? What dosage of depakote did you take? I had

migraines most of the time prior to depakote, but I have gained 15 lbs. I read

an

article in a neurology journal given to me by a neurologist showing that you can

gain 60lbs in 3-5 years!

Carol in LI, NY

[Guest guest]

2006/3/2, Joy <j0yeuxx@...>:

> He said he has seen positive results mostly in

> sma 3 and age doesn't matter.

If he has seen functional improvements in adults, that would be big

news, and he should perhaps write some kind of report and send it to

the people at Project CureSMA. If it's just a few individual patients,

the results would not have much weight as research in themselves, but

they would certainly suggest that a clinical trial in adults needs to

be done ASAP. I would have thought it was easier to measure benefits

in adults, who are likely to have been stable for many years.

Tokyo, Japan

[Guest guest]

Yeah, adult trials would be nice!

Angie

On Wednesday 01 March 2006 22:06, Senior wrote:

> 2006/3/2, Joy <j0yeuxx@...>:

> > He said he has seen positive results mostly in

> > sma 3 and age doesn't matter.

>

> If he has seen functional improvements in adults, that would be big

> news, and he should perhaps write some kind of report and send it to

> the people at Project CureSMA. If it's just a few individual patients,

> the results would not have much weight as research in themselves, but

> they would certainly suggest that a clinical trial in adults needs to

> be done ASAP. I would have thought it was easier to measure benefits

> in adults, who are likely to have been stable for many years.

>

>

> Tokyo, Japan

>

>

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[Guest guest]

I'll have to find out if he's seen results in adults---otherwise maybe I'll be

in the news lol

Angie <angie@...> wrote:

Yeah, adult trials would be nice!

Angie

On Wednesday 01 March 2006 22:06, Senior wrote:

> 2006/3/2, Joy :

> > He said he has seen positive results mostly in

> > sma 3 and age doesn't matter.

>

> If he has seen functional improvements in adults, that would be big

> news, and he should perhaps write some kind of report and send it to

> the people at Project CureSMA. If it's just a few individual patients,

> the results would not have much weight as research in themselves, but

> they would certainly suggest that a clinical trial in adults needs to

> be done ASAP. I would have thought it was easier to measure benefits

> in adults, who are likely to have been stable for many years.

>

>

> Tokyo, Japan

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

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> spinal muscular atrophy, health, and the daily issues of the disabled.

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[Guest guest]

Hi ,

The bible I use for nutrient depletions is Drug-Induced Nutrient Depletion Handbook, 2nd ed by Ross Pelton and several other pharmacists. I recommend getting a copy. From that book on pages 265, 316 and 325:

Depakote depletes Carnitine which means possible cardiac malfunction, decreased proper fat transportation leading to increased blood fats, lowered energy, messes with ketone production, decreased energy and endurance in athletes and may cause weight gain and it can cause abnormal liver function, muscle weakness and impaired glucose control.

Depakote also depletes Folic acid with possible DNA effects, abnormal cellular development (esp. in RBCs, stomach lining, intestines, uterine), and can lead to headache, elevated homocysteine, fatigue, insomnia, diarrhea, nausea, increased infections.

Christian Mathisen, DC

3650 S Pacific Hwy

Medford, OR 97501

cmathdc@...

[Guest guest]

does anyone have anything to say about the drug called depakote.

my daughter was just put on it for seizures .she was on keppra and

zonagram.now dr said can cause liver problems.she has small seizures 5 to

10 a day . she will be two in march . thank you all jaynee

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

8:00? 8:25? 8:40? Find a flick in no time

with the Search movie showtime shortcut.

[Guest guest]

My son has been on it for 4 years, 4 125 mg am 4x125

pm

Recently my son started on Prozac 3.5 mi liquid a day,

and it has made him into a normal kid despite effects

of depakote, he also takes 10mg focalin during school

days for ADHD.

I remember in the beginning he seemed out of if, but

in recent years he seems ok. I think he had been

depressed for sometime and the depakote helped a

little with mood adding the prozac made a world of

difference.

I think his seizures are becoming less frequent, he

used to have a lot of break-throughs, he is 11 and I

am hoping puberty to bring a stop to his absence

seizures

He tried taking lamictal 3 times he became allergic,

but in great mood Now my other son is switching from

zarontin to lamital, he is alert and good mood so far

he is tolerating it

Anyone have a positive experience after pubert with

absence seizures?

Hope this helps , ask if you have any other questions,

we have alot of learning issues not sure if it is meds

or epilepsy or both,

Does anyone have good ways of helping

reading/spelling/memory?

--- Kopera <ginakopera1@...> wrote:

> My son was on that for about 9 months and it made

> him into a zombee.

>

>

>

> joe wargo <joeandjaynee@...> wrote:

> does anyone have anything to say about the

> drug called depakote.

> my daughter was just put on it for seizures .she was

> on keppra and

> zonagram.now dr said can cause liver problems.she

> has small seizures 5 to

> 10 a day . she will be two in march . thank you all

> jaynee

>

>

>

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

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> Kopera

>

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[Guest guest]

Depakote can cause liver damage and damage the pancreas. Very young

children are most at risk of this kind of injury. Have you done any

ssearching for information on this? This link is to an article on

depakote which explains some of the risks

[http://www.healthsquare.com/newrx/dep1125.htm ]. If your daughter is

only having small seizures are you sure she needs to be drugged?

I haven't posted here for a while. I had intractable seizures and

brain surgery failed to cure them. I quit taking the drugs in 1993

because of the side efffects and they didn't work, and can

make seizures worse. With a combination of diet, nutrition, and

behaavioral training, I brought my seizures under control without

drugs in 1998.

There are so many ways a drug like depakote can harm your child

that your doctor may not have told you about. You may want to do some

google searches on depakote and side effects to find more

information. Also, you may want to do a search

on " depakote " " infants " . If her seizures are only minor ones have you

considered whether it is necessary to give her the drugs at all?

There are so many reasons for seizures. You're in the right group to

be looking at all aspects of treating seizures.

Zoe

>

> does anyone have anything to say about the drug called

depakote.

> my daughter was just put on it for seizures .she was on keppra and

> zonagram.now dr said can cause liver problems.she has small

seizures 5 to

> 10 a day . she will be two in march . thank you all jaynee

>

>

>

>

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

> 8:00? 8:25? 8:40? Find a flick in no time

> with the Search movie showtime shortcut.

>

>

[Guest guest]

My son was taking Depakote for a short time. While taking this medication, all he wanted to do was sleep! While he was taking this medication he also had a loss of appetite and lost weight.

Jen

Depakote

Has anyone had their child on this??Thanks!

[Guest guest]

My grand daughter takes it 2ce a day she hasn't had any problems at all

Sent via BlackBerry from T-Mobile

Depakote

Has anyone had their child on this??

Thanks!

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