Re: Depakote and stomach problems

November 17, 2004

Janine,

We have our daughter on Trileptal for 2 yrs now and has had much success with

seizure control, Amen. Not sure if it's suitable for younger children, my

daughter is 8 now, but has done well with it. Good luck, I know how stressful

that can be.

November 17, 2004

Janine- ask the dr. about keppra. It is not a harm to the liver- what depakote

might be. Depakote does increase weight gain but blood levels must be monitered

for the liver. Can she eat cashews? -great calorie content. I know depakote can

irritate the gi tract. Sue

J9V@... wrote:I haven't posted on here in quite awhile but I'm at witts end

on what to do and where to go. My daughter Krysta, 2 1/2 years old is back on

seizure meds because she had a pretty bad seizure back in September.

My problem is, since she has been put on Depakote (first liquid and now

sprinkels) she has been very spitty. It is now to the point she is starting to

periodically vomit. In between all of this we have seen a nutritionalist and an

endroconolgist who want me to increase her calories for failure to thrive and

grow. I've talked to the nuerologist about switching to another medication and

he prefers we lower her dose and risk the chance of her having another seizure

(when she was on a lower dose she had a small seizure.) One doctor reccommended

a g-tube but I really don't want to go that route she has always been able to

eat by mouth and is making great strides in her verbializations and I don't want

to lose that. She is developing and cognitively growing and doing wonderful but

I just don't know what to do about her stomach problems.

Any suggestions and/or comments would be greatly appreciated. Espically from

you doctors out here and parents who have dealt with these same issues.

A mother who is at witts end and needs answers and prayers to help her daughter.

Janine

_._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._.

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November 17, 2004

Hi Janine,

My daughter was on heavy dosages of depakote for some time and it can be

traumatic to the stomach. If I remember correctly it changed her eating

habits as well. It's probable a good attempt and try to lower dosages and

perhaps get a GI to see if it could be damaging in any way. The real reason

I responded is I wanted to know or suggest looking into the ketogenic diet.

It has help out my daughter tremendously and it may help if done correctly.

here is a link to read more:

http://my.webmd.com/content/article/95/103453.htm?z=1728_00000_1000_nb_06

Good Luck! and best wishes!

O

http://www.thejennyrosecenter.com

[ ] Depakote and stomach problems

I haven't posted on here in quite awhile but I'm at witts end on what to

do and where to go. My daughter Krysta, 2 1/2 years old is back on seizure

meds because she had a pretty bad seizure back in September.

My problem is, since she has been put on Depakote (first liquid and now

sprinkels) she has been very spitty. It is now to the point she is starting

to periodically vomit. In between all of this we have seen a nutritionalist

and an endroconolgist who want me to increase her calories for failure to

thrive and grow. I've talked to the nuerologist about switching to another

medication and he prefers we lower her dose and risk the chance of her

having another seizure (when she was on a lower dose she had a small

seizure.) One doctor reccommended a g-tube but I really don't want to go

that route she has always been able to eat by mouth and is making great

strides in her verbializations and I don't want to lose that. She is

developing and cognitively growing and doing wonderful but I just don't know

what to do about her stomach problems.

Any suggestions and/or comments would be greatly appreciated. Espically

from you doctors out here and parents who have dealt with these same issues.

A mother who is at witts end and needs answers and prayers to help her

daughter.

Janine

_._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._.

Join the International Hyperbaric Medical Association

http://www.hyperbaricmedicalassociation.org/docs/JOIN_Friends_Apr04.pdf

EPSDT decisions http://healthlaw.org/pubs/200308.epsdtdocket.html

Unrestricted downloads of 50+ pdf files on HBOT efficacy

medicaid/files/ ,

2/files/ and

http://www.drneubauerhbo.com/papers.htm

Download your state EPSDT program

http://www.hcfa.gov/medicaid/stateplan/Map.asp by doing a search on the word

" ameliorate " . State Medicaid websites

http://www.medi-cal.ca.gov/RelSites_Oth_States.asp . Medicaid waiver

programs: http://www.geocities.com/HotSprings/Villa/1029/medicaid.html

Find a hyperbaric clinic http://www.netnet.net/mums/hbolistAK-FL.htm,

http://www.netnet.net/mums/hbolistGA-NC.htm,

http://www.netnet.net/mums/hbolistOH-WI.htm

HBOT can save billions of dollars and millions of heartaches. Subscribe to

by sending a blank email to

mailto:medicaid-subscribe

December 9, 2004

Hi Janine,

It's been awhile but I am glad to hear Krysta is doing well. I just wanted to

put in my 2 cents. Max was seizure free and off meds like Krysta (for 8

months) until last January, he had a grand mal that took 1 1/2 hrs to stop.

They

put him on Lamictal. There is a small chance of developing a potentially bad

rash. Max had no problem (as long as the dosage is brought up slowly over

several weeks) at all and no side effects. One other thing, I can honestly say

the g-tube was the worst thing we ever did for Max.. Yes he needs it, they said

it would help his reflux. He immediately started projectile vomitting which

he had never done. It was Ten times worse.. We dealt with it for about a year

then he finally had the nissen done.

I would not do a gtube just because she is vomiting. If she was aspirating,

then yes.

Hope this helps. Take care

and Max

December 10, 2004

OH MY a g tube does nohing but make reflux WORSE my dd never had it until she

got her g tube but is now reflux free on aloe exttract and no other meds for

that. She needed the g tube cause she was non oral and the ng tube was not

cutting it, twe refused a nissen and then put her on the extract and VOILA! she

was cured weird but it worked! My dd was seizure free until today(seizure free

for 5 weeks and 4 days) she had a cluster today(she has IS) but I htink she is

gaining weigh and possibly outgrowing her meds she is on phenobarb, tegretol,

keppra, and topamax, we tried depakene but it caused major liver problems

-------------- Original message --------------

Hi Janine,

It's been awhile but I am glad to hear Krysta is doing well. I just wanted to

put in my 2 cents. Max was seizure free and off meds like Krysta (for 8

months) until last January, he had a grand mal that took 1 1/2 hrs to stop.

They

put him on Lamictal. There is a small chance of developing a potentially bad

rash. Max had no problem (as long as the dosage is brought up slowly over

several weeks) at all and no side effects. One other thing, I can honestly say

the g-tube was the worst thing we ever did for Max.. Yes he needs it, they said

it would help his reflux. He immediately started projectile vomitting which

he had never done. It was Ten times worse.. We dealt with it for about a year

then he finally had the nissen done.

I would not do a gtube just because she is vomiting. If she was aspirating,

then yes.

Hope this helps. Take care

and Max

December 10, 2004

The normal usual conditions for a G Tube are:

1. Unable to take in enough nutrition to sustain life

2. Required to prevent aspiration pneumonia

3. Unable to take in enough liquids to prevent dehydration

Other type of tube would be to have J (jejunostomy tube), by passes the

stomach and is placed in the first part of the intestines (Jejunum) thus do not

get

the reflux because there is no fluid in the stomach to reflux.

Fundiliplaction, is supposed to help prevent reflux.

Other tips to help prevent reflux.

1. Keep the individual in a simi setting position for two hours before

letting them lay down.

2. Check for stomach residual, if amount remaining since last feeding is

greater than acceptable residual amount set by the physician, the follow

physician

protocol for what to do if the individual continues to not empty the stomach

in expected time limit.

3. Another alternative is to administer the fluid very slowly by a pump over

a long period of time such as 10 hour 12 hours with a set rate each hour as

predetermined by the physician.

Best accomplished at night time so the individual is not continuously

connected to a pump. Freedom of pump in day time provides time to participate in

activities out of the home or away from the pump.

This may help some individuals, I trust I did not bore everyone with this

information.

A concerned friend and family member. Virginia

December 11, 2004

Hi there,

How old is your child? My Max, 2 1/2 also had IS. I was just wondering if

she is old enough to get off phenobarb. When Max turned 2 we put him on

Lamictal.. A whole new personality and intellect came out when he got off

phenobarb.

Now he is just a joy. That combined with hbot of course.

December 11, 2004

What is the aloe extract you spoke of for reflux? My 5 year old has some

reflux. I follow what Virginia said about not laying down or doing very active

play right after eating. I give her tagament 2 times day as I don't want to

damage her insides with the reflux.

Thanks,

December 11, 2004

Push the neurologist! If a patient is not controlled by one drug... they are

considered uncontrollable. Tell the doctor that you want monotherapy or referral

for surgical evaluation. Don't worry. They won't consider surgery till one drug

fails. The reality is that they like the security of control and are insensitive

to cost and side effects. Sue

mmr408@... wrote:Hi there,

How old is your child? My Max, 2 1/2 also had IS. I was just wondering if

she is old enough to get off phenobarb. When Max turned 2 we put him on

Lamictal.. A whole new personality and intellect came out when he got off

phenobarb.

Now he is just a joy. That combined with hbot of course.

December 11, 2004

I got it at a natural foods and drug store it tastes gross but we use it in the

tube and since being on it her reflux has diminished as well as my boyfriend

's reflux called " fruit of the lily " or something like that

-------------- Original message --------------

What is the aloe extract you spoke of for reflux? My 5 year old has some

reflux. I follow what Virginia said about not laying down or doing very active

play right after eating. I give her tagament 2 times day as I don't want to

damage her insides with the reflux.

Thanks,

December 11, 2004

I am sad to report emily lost seizure control yesterday(friday) she had been

seizure free for 5 weeks and 4 days Friday she had one or two clusters of about

10 spasms each, today(saturday) we went to the prdue Christmas show and she

seemed to cluster all the way there and a lot while we were there, UGH!

will be two January 27th she has been on phenobarb since she was 5 days old and

it has helped with her " eliptiform multifocal sharp waves " not sure what That

means? I would love to see her off of it, she is extremely addicted to it!

Niki

-------------- Original message --------------

Push the neurologist! If a patient is not controlled by one drug... they are

considered uncontrollable. Tell the doctor that you want monotherapy or referral

for surgical evaluation. Don't worry. They won't consider surgery till one drug

fails. The reality is that they like the security of control and are insensitive

to cost and side effects. Sue

mmr408@... wrote:Hi there,

How old is your child? My Max, 2 1/2 also had IS. I was just wondering if

she is old enough to get off phenobarb. When Max turned 2 we put him on

Lamictal.. A whole new personality and intellect came out when he got off

phenobarb.

Now he is just a joy. That combined with hbot of course.

December 12, 2004

phenobarb is usually not the anticonvulasant of choice. It should not be

discontinued abruptly, but tapered off under medical supervision while starting

another type of anticonvulsant. You may want to discuss this with your

neurologist. Hope this helps,

Sincerely, Virginia

December 12, 2004

Multifocal means beginning in more than one place. Flashing lights is a trigger

of seizures for some people. Is she treated by an epileptologist- a neurologist

subspecializing in epilepsy? Sue

26wkrmom@... wrote:

I am sad to report emily lost seizure control yesterday(friday) she had been

seizure free for 5 weeks and 4 days Friday she had one or two clusters of about

10 spasms each, today(saturday) we went to the prdue Christmas show and she

seemed to cluster all the way there and a lot while we were there, UGH!

will be two January 27th she has been on phenobarb since she was 5 days old and

it has helped with her " eliptiform multifocal sharp waves " not sure what That

means? I would love to see her off of it, she is extremely addicted to it!

Niki

-------------- Original message --------------

Push the neurologist! If a patient is not controlled by one drug... they are

considered uncontrollable. Tell the doctor that you want monotherapy or referral

for surgical evaluation. Don't worry. They won't consider surgery till one drug

fails. The reality is that they like the security of control and are insensitive

to cost and side effects. Sue

mmr408@... wrote:Hi there,

How old is your child? My Max, 2 1/2 also had IS. I was just wondering if

she is old enough to get off phenobarb. When Max turned 2 we put him on

Lamictal.. A whole new personality and intellect came out when he got off

phenobarb.

Now he is just a joy. That combined with hbot of course.

December 12, 2004

It sounds like you must have the best. May things continue to improve with

time.

You might want to keep in mind flashing lights from many different sources,

i.e., television, road side flashing light advertisements, entertainment

lights are examples, any thing that flashes, may help trigger seizures in some

individuals. This may not be the case with your daughter, but others might

find it so in their love ones.

Virginia

December 12, 2004

It has worked quite well for emily these past two years, her neurologist feels

she will take 6 -12 months to wean off of it, though we are not considering a

wean at this time. she is on other AED which control focals and IS though the

phenobarb cleared up her EEG

-------------- Original message --------------

phenobarb is usually not the anticonvulasant of choice. It should not be

discontinued abruptly, but tapered off under medical supervision while starting

another type of anticonvulsant. You may want to discuss this with your

neurologist. Hope this helps,

Sincerely, Virginia

December 12, 2004

She sees Dr Hecox at the University of Chicago and Dr Ruge is her peds neuro

surgeon at Lutheran General Hospital in Park Ridge. The phenobarb cleared up

her EEG for the multifocal sharp waves, then came the IS which through PET scan

show it to be from a focal point. Though I cannot not take her to Michigan we

" see " Dr Harry Chugani who is absolutely wonderful when it comes to IS. We have

gotten some wonderful advice from him via phone

-------------- Original message --------------

Multifocal means beginning in more than one place. Flashing lights is a trigger

of seizures for some people. Is she treated by an epileptologist- a neurologist

subspecializing in epilepsy? Sue

26wkrmom@... wrote:

I am sad to report emily lost seizure control yesterday(friday) she had been

seizure free for 5 weeks and 4 days Friday she had one or two clusters of about

10 spasms each, today(saturday) we went to the prdue Christmas show and she

seemed to cluster all the way there and a lot while we were there, UGH!

will be two January 27th she has been on phenobarb since she was 5 days old and

it has helped with her " eliptiform multifocal sharp waves " not sure what That

means? I would love to see her off of it, she is extremely addicted to it!

Niki

-------------- Original message --------------

Push the neurologist! If a patient is not controlled by one drug... they are

considered uncontrollable. Tell the doctor that you want monotherapy or referral

for surgical evaluation. Don't worry. They won't consider surgery till one drug

fails. The reality is that they like the security of control and are insensitive

to cost and side effects. Sue

mmr408@... wrote:Hi there,

How old is your child? My Max, 2 1/2 also had IS. I was just wondering if

she is old enough to get off phenobarb. When Max turned 2 we put him on

Lamictal.. A whole new personality and intellect came out when he got off

phenobarb.

Now he is just a joy. That combined with hbot of course.

December 12, 2004

Any time you have a physician that will listen to a parent, in my opinion

you have a winner.

Keep on Keeping on. There other plus is the belief in HBOT.

December 12, 2004

my dd will not look at our TV so that makes sense, what we notice is when we are

driving at night the flashing of the headlights causes trouble but thankfully IS

is not photosensitive! Our current neuro would like to wean off topamax and

phenobarb because she was seizure free but now with them back I do not know for

sure if that is in our future UGH!!!!!!!! I believe the drugs are delaying some

motor skills I really love my neuro because he is interested in what I have to

say as a parent and he looks at emily as an individual and not a statistic, plus

he is a fan of HBOT (he he!)

I am not sure about the best LOL but I guess he is the best for us

-------------- Original message --------------

It sounds like you must have the best. May things continue to improve with

time.

You might want to keep in mind flashing lights from many different sources,

i.e., television, road side flashing light advertisements, entertainment

lights are examples, any thing that flashes, may help trigger seizures in some

individuals. This may not be the case with your daughter, but others might

find it so in their love ones.

Virginia

December 12, 2004

You could ask about the flashing lights when the next eeg is done. I assume the

focal points are in the temporal lobes. Lt. temporal can be hard to control and

language is involved so it's hard to do surgery there . I would still push for

monotherapy. Ask about newer drugs. My daughter is well controlled occipital on

keppra. Sue

26wkrmom@... wrote:my dd will not look at our TV so that makes sense,

what we notice is when we are driving at night the flashing of the headlights

causes trouble but thankfully IS is not photosensitive! Our current neuro

would like to wean off topamax and phenobarb because she was seizure free but

now with them back I do not know for sure if that is in our future UGH!!!!!!!!

I believe the drugs are delaying some motor skills I really love my neuro

because he is interested in what I have to say as a parent and he looks at emily

as an individual and not a statistic, plus he is a fan of HBOT (he he!)

I am not sure about the best LOL but I guess he is the best for us

-------------- Original message --------------

It sounds like you must have the best. May things continue to improve with

time.

You might want to keep in mind flashing lights from many different sources,

i.e., television, road side flashing light advertisements, entertainment

lights are examples, any thing that flashes, may help trigger seizures in some

individuals. This may not be the case with your daughter, but others might

find it so in their love ones.

Virginia

December 12, 2004

I still would push them for mono-therapy. Sue

26wkrmom@... wrote:She sees Dr Hecox at the University of Chicago and Dr

Ruge is her peds neuro surgeon at Lutheran General Hospital in Park Ridge. The

phenobarb cleared up her EEG for the multifocal sharp waves, then came the IS

which through PET scan show it to be from a focal point. Though I cannot not

take her to Michigan we " see " Dr Harry Chugani who is absolutely wonderful when

it comes to IS. We have gotten some wonderful advice from him via phone

-------------- Original message --------------

Multifocal means beginning in more than one place. Flashing lights is a trigger

of seizures for some people. Is she treated by an epileptologist- a neurologist

subspecializing in epilepsy? Sue

26wkrmom@... wrote:

I am sad to report emily lost seizure control yesterday(friday) she had been

seizure free for 5 weeks and 4 days Friday she had one or two clusters of about

10 spasms each, today(saturday) we went to the prdue Christmas show and she

seemed to cluster all the way there and a lot while we were there, UGH!

will be two January 27th she has been on phenobarb since she was 5 days old and

it has helped with her " eliptiform multifocal sharp waves " not sure what That

means? I would love to see her off of it, she is extremely addicted to it!

Niki

-------------- Original message --------------

Push the neurologist! If a patient is not controlled by one drug... they are

considered uncontrollable. Tell the doctor that you want monotherapy or referral

for surgical evaluation. Don't worry. They won't consider surgery till one drug

fails. The reality is that they like the security of control and are insensitive

to cost and side effects. Sue

mmr408@... wrote:Hi there,

How old is your child? My Max, 2 1/2 also had IS. I was just wondering if

she is old enough to get off phenobarb. When Max turned 2 we put him on

Lamictal.. A whole new personality and intellect came out when he got off

phenobarb.

Now he is just a joy. That combined with hbot of course.

December 12, 2004

You should ask if he's afraid of causing seizures by triggering them from

weining her. Is the dr. confident to treat a patient seizing. I think most of

them rely on multiple drugs for fear of causing complications from seizing. Do

you know what lobes the focal points are in..if so, call the 1-800 Epilepsy

foundation number and request articles on the focal point and type of seizures.

Sometimes you get ideas in articles that the drs. listen when you show them. It

also explains things the drs. don't always tell you. If you have a nurse or dr.

friend who can help you interpret some of the language, you have it made. Sue

26wkrmom@... wrote:It has worked quite well for emily these past two

years, her neurologist feels she will take 6 -12 months to wean off of it,

though we are not considering a wean at this time. she is on other AED which

control focals and IS though the phenobarb cleared up her EEG

-------------- Original message --------------

phenobarb is usually not the anticonvulasant of choice. It should not be

discontinued abruptly, but tapered off under medical supervision while starting

another type of anticonvulsant. You may want to discuss this with your

neurologist. Hope this helps,

Sincerely, Virginia

December 12, 2004

Our goal is monotherapy but we have to get there, she has failed many drugs and

IS is hard to treat and she cannot have ACTH, his goal is to have her on 2 drus

and seizure free by this time next year and then one drug but with many

different types of seizures its hard to treat what treats her IS does not stop

her other seizures. I am pretty comfortable with our neuros abilities as he is

in charge of the peds neuro and always referred to as the " expert in peds

neurology "

Thanks!