Would love your opinions

[Guest guest]

Hi everyone,

I usually read the posts on here because I feel it is a really good learning and

sharing experience for all of us to connect with our variations of epilepsy. My

ten year old daughter has epilepsy that had started with petit mals and she has

been medicated since around age five with Zarontin and eventually also Lamictal.

Last August she had her first tonic clonic and her Lamictal meds went up in

dosage. Altogether since August, she has had six seizures, all upon waking up -

right as she was trying to wake up or moments after. When I read about other

people's experiences with seizures, I sometimes feel that I have nothing to

complain about because hers *seem* well controlled. If she becomes too tired,

is outside in the sun too much or too excited about something, I can probably

expect to watch her more closely. She is gluten, dairy, tomato, soy, corn

sensitive and so I watch her diet carefully.

Here is where I would love to hear as many people's opinions as you will grant

me.

I know we are all individual with our own situations and I can't apply anything

onto our situation - just a disclaimer so that no one thinks I will read them as

medical advice.

We saw my daughter's neuro today and I ended up feeling really really

overwhelmed, negative and helpless - and frustrated with what transpired, how I

feel and what I don't know or even what questions I should be asking, how

serious I should be taking things etc. I really hate when a doctor makes me

feel like I am not doing my job. Maybe she wasn't implying that but there was a

clashing of energy at many points during the visit although things were kept in

a nice tone. The whole time I had to fight bursting into tears.

Basically any seizure is unacceptable to the neuro and her bottom line is

whatever meds, however many meds as long as it stops the seizures and my

daughter can have a normal life. I get the normal life part...I do not like

medicating my child as it is and she has been on medication nearly half as long

as she's been alive, on a daily basis. There are no tests to show me what this

will do to her someday. When I mentioned she's had six seizures she looked at

me and said that I'm awfully calm for my child having all these seizures. I

simply replied that it isn't going to do any good for me to be anything but

calm. I was made to feel bad that we haven't visited since August but honestly

I don't know what else she would do except keep drilling me about more meds.

Then I was told that this one seizure that I had described was not a seizure,

couldn't be a seizure but maybe a movement disorder. I am not the doctor but I

truly believe what I saw was a seizure. It was with the deviating rhythmic eye

pulsing, the head turned to one side, the legs going yet my daughter was able to

talk to me and told me that she couldn't control her movements as it was

happening. The neuro said that she couldn't have talked through the seizure

(she did - just the one time). I had looked it up at the time and checked with

the epilepsy boards and yes, there are seizures that you can talk through unless

I am not reading correct information. She says it wasn't a seizure. Just like

one seizure that I mentioned to her was a " fainting spell " in her words when my

daughter never fell or fainted.

She says diet has not been proven to do anything to help seizures or cause them.

I replied that I believe that any stressors on my daughters body including food

sensitivities that stress her system because her body is sensitive to them, is

trigger in my eyes.

She wanted to do a sleep deprivation EEG on Sam. Maybe I am just too soft or

irrational about this but I basically almost burst out into tears because there

is NO WAY that I want to do this. She can't handle not getting enough sleep

(which I understand is the point) and the ramifications of the guinea pig

experiment will last for days with her. I will probably take home a child who

seizes for the next couple of days and is uncomfortable and moody. She wanted

to see what presents on the EEG. I understand all that but I told her that I'm

not comfortable with it and don't want it. So she was sort of getting

exasperated with me I think. Then she said ok, we'll do the normal 24 hour eeg,

which we normally do once a year.

How much medication is too much for anyone here? Does anyone believe in factors

outside of the medication as things that help? Maybe I am just exasperated

being a single parent and doing all the work here but I don't like that I feel

my child is an experiment....although I believe every case has to be in order to

find what works. I suppose it just comes with the territory.

Thanks for listening!

Dawn

[Guest guest]

Dawn -

Hi! I thought I would PM you and write to the group at the same time, since the

posts seem to be delayed on this group.I just felt bad reading your post and

wanted to write you right away.

So I am 50 and have had seizures most of my life. They have been mostly complex

partial, simple partial, and some absence, and some tonic/clonic, and only

rarely generalized seizures.....if I am stating this all correctly.

This is my opinion, but I think the long term use of any drug is potentially

harmful. It is the benefit versus the risk factor. I am currently treating my

seizures and remaining health issues with only alternative medicine. Fortunately

I have an extensive knowledge in what I am doing, and have the confidence to

keep a protocol going on my own. I do not see a neurologist, and haven't for

about 15 years. I went through about seven of them in a couple years period,

because I was too sick and hard to treat - meaning I wasn't responding well to

anything they tried on me.

I must also clarify that my seizures were not properly diagnosed or addressed

because at the time I had too many other issues happening, like end state

multiple sclerosis. My seizure disorder went diagnosed as a mental problem, and

no one realized my episodes were seizures. I was put on many antiseizure meds

for other reasons, and passed around to many doctors. I was on thirteen

presecription drugs at one point, and a total mess.

A year and a half ago I had a grand mal, and then started having numerous daily

seizures for several months. Then they becamee obvious finally, but IDawn -

Hi! I thought I would PM you and write to the group at the same time, since the

posts seem to be delayed on this group.I just felt bad reading your post and

wanted to write you right away.

So I am 50 and have had seizures most of my life. They have been mostly complex

partial, simple partial, and some absence, and some tonic/clonic, and only

rarely generalized seizures.....if I am stating this all correctly.

This is my opinion, but I think the long term use of any drug is potentially

harmful. It is the benefit versus the risk factor. I am currently treating my

seizures and remaining health issues with only alternative medicine. Fortunately

I have an extensive knowledge in what I am doing, and have the confidence to

keep a protocol going on my own. I do not see a neurologist, and haven't for

about 15 years. I went through about seven of them in a couple years period,

because I was too sick and hard to treat - meaning I wasn't responding well to

anything they tried on me.

I must also clarify that my seizures were not properly diagnosed or addressed

because at the time I had too many other issues happening, like end state

multiple sclerosis. My seizure disorder went diagnosed as a mental problem, and

no one realized my episodes were seizures. I was put on many antiseizure meds

for other reasons, and passed around to many doctors. I was on thirteen

presecription drugs at one point, and a total mess.

A year and a half ago I had a grand mal, and then started having numerous daily

seizures for several months. Then they becamee obvious finally, but I know I had

them since I was probably a baby, I can remember them from quite young.

I am 100% certain that food intolerances and allergies can cause seizures. There

is a huge connection between the gut and the brain. The digestive system is

sometimes referred to as the SECOND BRAIN.

I avoid the same foods that your daughter does. However, I went off the wagon

last week - something I do about twice a year.....and I had a basket of corn

chips at a mexican restaurant. Nothing else.......I ate my dinner after we got

home, but I caved in and decided to eat the chips. Well it sent me into a

seizure cluster for about four days. I am still coming out of it.......the food

obviously has now passed, but it still has me somewhat foggy.

The only doctor I really see is an allgergist, and he is completely hip to

everything I am doing.....and certainly knows that my food and other allergies

trigger seizures. It's common sense to him.

So..........you may know more than your neuro, it looks like.

One of many reasons I don't see a neuro, is that I am allergic now to all

drugs.........mainly because I have been overmedicated for decades and my body

now refuses to tolerate any drug or chemical It's mostly a blessing. So going to

a neuro would be pointless for me. I also would not subject myself to a sleep

deprived EEG, because I would probably have a seizure with sleep and doing the

test....and I wouldn't want to have a completely melt down. I think it's

unnecessary. I also have always refused spinal taps and contrast MRI's - where

they want to put DYE into my IV. No Way! Now it would probably kill me

literally, with my allergies.

Your ideas are totally sound and many doctors feel the way you do, including

mine. But to find a neuro that is progressive, I'm sure theya re out there....I

just am not the source for you on this.

Your daughter is really lucky to have you, and I'm sure she is a gem.

I also forgot to add that I often can talk during even the complex parital

seizures, and when I have tonic/clonic jerks. I can tell my husband to help

unfreeze me, or just say a word or two. Sometimes I am a tad confused, and then

there are times I am awake but I can no longer talk to him. Each seizure is a

little different for me. Sometimes I can talk and my os has dropped down also.

Know that things can get better. I have seriously recovered from hospice stage

twice in my life! Once 14 years ago, and once ten months ago. Now I am doing

really well in most areas, and pretty active - but I still need to resolve the

seizures and get some more brain repair. Other than that, I am very active and

living a good life.

I recently went back to raw foods, and it is making a huge difference for me. It

has helped my digestion so much, and brain inflammation too. I feel more " here "

and have great energy, I am less congested in my head, less dizzy, and very

hopeful this will all heal.

Hang in there. Sorry for the long reply. Something really tugged in me when I

read your post.

Love,

jnanda

[Guest guest]

Hi Dawn,

Sorry you are going through the same frustration and humiliation a lot of us

have endured. My neurologist told me once that she wasn't concerned with whether

or not the dilantin damaged my kidneys because her goal was to stop the seizures

regardless any injury to me. Sound familiar?

Eventally, I quit the drugs altogether because the side effects were much worse

than having uncontrolled seizures. A few years after I quit the drugs I found a

psychologist who taught me behavioral techniques for stopping seizures, changed

my diet as you've already done, started using taurine supplements and other

vitamins, and ended up becoming seizure free since 1998.

It can be very difficult to get beyond the word " epilepsy " and start focusing

on managing seizures. All of the people labeled with epilepsy do not have

seizures for the same reason, yet all get treated pretty much as if we had the

same disorder when we do not. My seizures were thought to be caused by brain

damage, others have them from gluten intolerance, magnesium deficiency, hormonal

imbalance or other causes.

Sounds like your neuro isn't helping your daughter get well because she is

only trying to suppress seizure activity, not find and treat whatever causes

them. Nor does it sound like she is giving you information on the long term side

effects of the drugs or doing anything to protect your daughter's health from

any damage due to the drugs. Did she tell you that the FDA now requires a

warning that taking zarontin and lamictal are linked to increased risk of

suicide?

Or did she tell you that psychiatric symptoms might be a sign of a drug

reaction?

You can ask your pharmacist for detailed information on long term side effects

of the meds and also do some searching on the web.

Below are some links for you to check out. 's Hopkins has been having a lot

of success using a modified Atkins Diet for treating seizures-much easier to

manage than the ketogenic diet. I wrote some articles on it which you can find

from my main page:

http://www.suite101.com/profile.cfm/zoe_l

This link is to the s\Reiter Epilepsy Research Program. I'm sure you've

seen me post on them before. The focus on learning ways to manage seizures on

one's own and many of their patients end up being able to get off the drugs

altogether.

http://andrewsreiter.com/

If your daughter had what you think was a fainting spell, it could be a sign of

a heart problem, syncope, the condition most often misdiagnosed as epilepsy. Be

sure and check out this links about it:

Vasovagal syncope and the inappropriate diagnosis of epilepsyPatients with

vasovagal syncope (simple fainting spells) often receive the mistaken diagnosis

of seizure disorder, or epilepsy.

heartdisease.about.com/cs/generallinks/a/syncopeseizure.htm

You canask your pharmacist if syncope can be triggered by either of your

daughter's drugs.

You may also want to ask the pharmacist to help you find out how the drug is

metabolized and what nutrients it may interfere with. These too could have

serious side effects.

There are alternatives to drugs and surgeries for seizure disorders.

Zoe

>

> Hi everyone,

>

> I usually read the posts on here because I feel it is a really good learning

and sharing experience for all of us to connect with our variations of epilepsy.

My ten year old daughter has epilepsy that had started with petit mals and she

has been medicated since around age five with Zarontin and eventually also

Lamictal. Last August she had her first tonic clonic and her Lamictal meds went

up in dosage. Altogether since August, she has had six seizures, all upon

waking up - right as she was trying to wake up or moments after. When I read

about other people's experiences with seizures, I sometimes feel that I have

nothing to complain about because hers *seem* well controlled. If she becomes

too tired, is outside in the sun too much or too excited about something, I can

probably expect to watch her more closely. She is gluten, dairy, tomato, soy,

corn sensitive and so I watch her diet carefully.

>

> Here is where I would love to hear as many people's opinions as you will grant

me.

>

> I know we are all individual with our own situations and I can't apply

anything onto our situation - just a disclaimer so that no one thinks I will

read them as medical advice.

>

> We saw my daughter's neuro today and I ended up feeling really really

overwhelmed, negative and helpless - and frustrated with what transpired, how I

feel and what I don't know or even what questions I should be asking, how

serious I should be taking things etc. I really hate when a doctor makes me

feel like I am not doing my job. Maybe she wasn't implying that but there was a

clashing of energy at many points during the visit although things were kept in

a nice tone. The whole time I had to fight bursting into tears.

>

> Basically any seizure is unacceptable to the neuro and her bottom line is

whatever meds, however many meds as long as it stops the seizures and my

daughter can have a normal life. I get the normal life part...I do not like

medicating my child as it is and she has been on medication nearly half as long

as she's been alive, on a daily basis. There are no tests to show me what this

will do to her someday. When I mentioned she's had six seizures she looked at

me and said that I'm awfully calm for my child having all these seizures. I

simply replied that it isn't going to do any good for me to be anything but

calm. I was made to feel bad that we haven't visited since August but honestly

I don't know what else she would do except keep drilling me about more meds.

Then I was told that this one seizure that I had described was not a seizure,

couldn't be a seizure but maybe a movement disorder. I am not the doctor but I

truly believe what I saw was a seizure. It was with the deviating rhythmic eye

pulsing, the head turned to one side, the legs going yet my daughter was able to

talk to me and told me that she couldn't control her movements as it was

happening. The neuro said that she couldn't have talked through the seizure

(she did - just the one time). I had looked it up at the time and checked with

the epilepsy boards and yes, there are seizures that you can talk through unless

I am not reading correct information. She says it wasn't a seizure. Just like

one seizure that I mentioned to her was a " fainting spell " in her words when my

daughter never fell or fainted.

>

> She says diet has not been proven to do anything to help seizures or cause

them. I replied that I believe that any stressors on my daughters body

including food sensitivities that stress her system because her body is

sensitive to them, is trigger in my eyes.

>

> She wanted to do a sleep deprivation EEG on Sam. Maybe I am just too soft or

irrational about this but I basically almost burst out into tears because there

is NO WAY that I want to do this. She can't handle not getting enough sleep

(which I understand is the point) and the ramifications of the guinea pig

experiment will last for days with her. I will probably take home a child who

seizes for the next couple of days and is uncomfortable and moody. She wanted

to see what presents on the EEG. I understand all that but I told her that I'm

not comfortable with it and don't want it. So she was sort of getting

exasperated with me I think. Then she said ok, we'll do the normal 24 hour eeg,

which we normally do once a year.

>

> How much medication is too much for anyone here? Does anyone believe in

factors outside of the medication as things that help? Maybe I am just

exasperated being a single parent and doing all the work here but I don't like

that I feel my child is an experiment....although I believe every case has to be

in order to find what works. I suppose it just comes with the territory.

>

> Thanks for listening!

>

> Dawn

>

[Guest guest]

>Hi Dawn. If yu'll send a message to mykdymond@... i'll send yu a few

links that yu'll find helpful. If not i can't send cuz i don't have yur address.

i'll await yur message. Doesn't have to be a long one.. Wish yu all the

best.....

> Hi everyone,

>

> I usually read the posts on here because I feel it is a really good learning

and sharing experience for all of us to connect with our variations of epilepsy.

My ten year old daughter has epilepsy that had started with petit mals and she

has been medicated since around age five with Zarontin and eventually also

Lamictal. Last August she had her first tonic clonic and her Lamictal meds went

up in dosage. Altogether since August, she has had six seizures, all upon

waking up - right as she was trying to wake up or moments after. When I read

about other people's experiences with seizures, I sometimes feel that I have

nothing to complain about because hers *seem* well controlled. If she becomes

too tired, is outside in the sun too much or too excited about something, I can

probably expect to watch her more closely. She is gluten, dairy, tomato, soy,

corn sensitive and so I watch her diet carefully.

>

> Here is where I would love to hear as many people's opinions as you will grant

me.

>

> I know we are all individual with our own situations and I can't apply

anything onto our situation - just a disclaimer so that no one thinks I will

read them as medical advice.

>

> We saw my daughter's neuro today and I ended up feeling really really

overwhelmed, negative and helpless - and frustrated with what transpired, how I

feel and what I don't know or even what questions I should be asking, how

serious I should be taking things etc. I really hate when a doctor makes me

feel like I am not doing my job. Maybe she wasn't implying that but there was a

clashing of energy at many points during the visit although things were kept in

a nice tone. The whole time I had to fight bursting into tears.

>

> Basically any seizure is unacceptable to the neuro and her bottom line is

whatever meds, however many meds as long as it stops the seizures and my

daughter can have a normal life. I get the normal life part...I do not like

medicating my child as it is and she has been on medication nearly half as long

as she's been alive, on a daily basis. There are no tests to show me what this

will do to her someday. When I mentioned she's had six seizures she looked at

me and said that I'm awfully calm for my child having all these seizures. I

simply replied that it isn't going to do any good for me to be anything but

calm. I was made to feel bad that we haven't visited since August but honestly

I don't know what else she would do except keep drilling me about more meds.

Then I was told that this one seizure that I had described was not a seizure,

couldn't be a seizure but maybe a movement disorder. I am not the doctor but I

truly believe what I saw was a seizure. It was with the deviating rhythmic eye

pulsing, the head turned to one side, the legs going yet my daughter was able to

talk to me and told me that she couldn't control her movements as it was

happening. The neuro said that she couldn't have talked through the seizure

(she did - just the one time). I had looked it up at the time and checked with

the epilepsy boards and yes, there are seizures that you can talk through unless

I am not reading correct information. She says it wasn't a seizure. Just like

one seizure that I mentioned to her was a " fainting spell " in her words when my

daughter never fell or fainted.

>

> She says diet has not been proven to do anything to help seizures or cause

them. I replied that I believe that any stressors on my daughters body

including food sensitivities that stress her system because her body is

sensitive to them, is trigger in my eyes.

>

> She wanted to do a sleep deprivation EEG on Sam. Maybe I am just too soft or

irrational about this but I basically almost burst out into tears because there

is NO WAY that I want to do this. She can't handle not getting enough sleep

(which I understand is the point) and the ramifications of the guinea pig

experiment will last for days with her. I will probably take home a child who

seizes for the next couple of days and is uncomfortable and moody. She wanted

to see what presents on the EEG. I understand all that but I told her that I'm

not comfortable with it and don't want it. So she was sort of getting

exasperated with me I think. Then she said ok, we'll do the normal 24 hour eeg,

which we normally do once a year.

>

> How much medication is too much for anyone here? Does anyone believe in

factors outside of the medication as things that help? Maybe I am just

exasperated being a single parent and doing all the work here but I don't like

that I feel my child is an experiment....although I believe every case has to be

in order to find what works. I suppose it just comes with the territory.

>

> Thanks for listening!

>

> Dawn

>