Re: 4 year old daughter with seizures

October 13, 2002

Sha,

I went to an epilepsy conference yesterday and the speaker the speaker was

saying that some of the medications did not work for certain types of

seizures. He said that he has seen many people on the wrong type of meds for

their type of seizures which of course equals poor seizure control and in

some cases actually increases the seizures.

From waht you described your daughter is having generalized seizures without

a focal point???? Meaning the seizure is all over the brain instead of

starting in one specific area.

I have a paper right in front of me that states Lamictal is given for simple

partial seizures, complex partial, secondary generalization, Lennox Gestaut,

and sometimes absence seizures. It says nothing about grand mal seizures.

I will list for you the meds it suggests for Generalized tonic clonic

seizures (grand mal) Phenobarbital, Mysoline, Tegretal, Depakote, Celontin,

Neurontin, Topamax (which in my opinion is not fit for a dog, it left my

child like a zombie), and Cerebyx.

The rest of the meds listed are for secondary generalization.

The speaker yesterday was a very knowledgeable man who says that a lot of

neurplogists just are not up to date on what meds to give for certain seizure

types.

He said that the parent needs to educate themselves in order to identify what

seizure type they are dealing with and familiarize themselves with what meds

work for that seizure.

He had a lot more to say that I don't mind sharing if anyone is interested.

I hope this helps.

Tracey

October 13, 2002

Never mind that question (it was stupid) I know you all are interested so let

me spill my guts.

He said first of all 80% of seizure cases are controllable with monotherapy,

about 20% need an additional one drug. There is no justification in using

more than two drugs. If the drug is not doing its job, it is not the right

drug.

He discussed " therapeutic levels " which are the lowest and the highest point

an average population responds to meds at. He said that this level is not to

be used as the golden rule, instead in is a guide to where to start. He gave

two case senarios, one was a 65yr old veteran who had suffered uncontrollable

seizures for over twenty five years. The mans neurologist had given many

different drugs and nothing worked. He said he went over this man's chart

over and over again and finally stumbled accross the first medication this

man was on, which I think he said was Phenobarbital, which had woked for a

short period of time and ceased to work.

The chart stated that the man was pushed up to the max level which for Pheno.

was 30 back them (T.R. 20-30) since he had reached the level of 30 and the

man was not responding he weaned... and started another med.

Long story short, there was no toxicity stated for the man, he had no side

effects etc. So what they ended up doing is taking this man up to a higher

level 33-38 and he was fine. No seizures and no side effects.

Another case was a lady who became toxic on Pheno. at level 20. They backed

her down to 16 and she was fine.

He said most neurologists will take the patients to the max T.R. and assume

the meds are not working.

Overall message, we are all individuals and due to different metabolic rates

and other factors do not really fit into what is considered therapeutic range.

The first thing that crossed my mind is you are taking these people to a

higher level and leaving them there which we all know leads to liver damage.

His relpy to this was, he brought up the kindling effect and what is called

the mirrow focus, which is when seizure do have a focal point, if the focal

point is not calmed chances are another focal point will develope exactly on

the opposite side =two focal points. If you find the right medication and get

the seizures to stop you will reverse that kindling effect. No seizures

closes down the path and will result in better chances in becoming seizure

free. This is why some neuros after two years seizure free will removed meds.

So his whole thing was, yes, you are taking a high dose but only for a short

period of time.

He also stated because of the mirrow focus development that he is a high

advocate (that is if no meds do the trick) for surgery. I did not like the

sound of this either. But what he said made sense. He said once you have

developed a mirrow focal point they cannot tell which is the original one

(which is the one to be removed) thus you are less likely in becoming seizure

free. He said this is imparticularly important in temporal lobe seizures, you

can live without one temporal lobe, the other will compensate, but you cannot

take both.

There was a woman there, her boy is on 4 different meds, the woman stated

that he was lethargic, I could not believe what this man replied " NO SHIT " .

He stressed, try one med, take it to the max (which is side effects) if there

are side effects change meds because it is the wrong type of med for you. But

he also stressed to give the med a chance to work.

I thinkI blabberd enough.

Hope this helps someone!

Tracey

October 13, 2002

Have you addressed teh following?

1. Gut dysbiosis

2. Checked for mercury or lead poisining

3. Removed all sources (as best you can ) of fortified iron, l-glutamic

acid or MSG?

4. Checked the immune system panels and subclasses

5. Does she have the stealth virus (www.ccid.org )

6. Fatty acids-are they converting, what is too overabundant

7. Nutritional deficiencies? Mag deficiency? Taurine Deficiency? B-6

deficiency?

Kathy

[ ] 4 year old daughter with seizures

> Hello:

>

> I have a 4year old daughter with epilepsy. Her

> seizures started at teh age of 2.6 years. The seizures

> are grand mal seizures, When she has a seizure she

> will fall down, mouth and eyes twich and body becomes

> stiff.We tried several medications but nothing seemed

> to work. Phenobar worked for 3 months but her

> behaviour was worse. She is very hyper and we cannot

> control when we take her out.

>

> Right now since 2 months we started Lamictal, my

> observation is that as increase the dose of lamictal

> her seizures increased. Before lamictal they used to

> be once or twice a week but now they are almost every

> day. Doctors are not agreeing with me. Yesterday we

> increased her dose from 50-mg - 62.5mg day and night,

> today she had two grand mal and some small jerks.

>

> Did anyone hear that Lamictal causes seizures?? She is

> alos on Neurontin and topomax. All these medicines are

> doing nothing.

>

> Please help

>

> Thanks

> Sha

>

October 13, 2002

Sha,

The last drug I was taking before I became drug-free was Lamictal. Of

the drugs I had taken in the past - Dilantin, Phenobarbital, Tegretol

and Lamictal - Lamictal was the least harmful. I think it was also the

newest of those drugs.

However, anytime you go without taking your medication as prescribed you

risk adverse reactions - including seizures.

Why? Because taking prescription drugs for a period of time causes

changes in your body to take place. Your body changes the way it

operates to some extent due to the drug being in your system. If you

suddenly deprive your body of the drug, things may suddenly

short-circuit. That actually happened to me when I went a few days

without taking Tegretol. I ended up collapsing in front of a computer

terminal at work. When I woke up I was in an ambulance on the way to a

hospital.

Take it from someone who learned the hard way, don't decide on your own

not to take your prescribed medication. I became drug-free because I

had the guidance of medical professionals to help me. I did not " play

doctor " with my own health. And, neither should you or anyone else in

this group. Always seek professional guidance. That's why we have

a website set up to help you get all kinds of professional advice via

e-mail - . Please take

advantage of the resources available through all those " Links. "

Good luck.

Lamar

shat345 wrote:

> Hello:

>

> I have a 4year old daughter with epilepsy. Her

> seizures started at teh age of 2.6 years. The seizures

> are grand mal seizures, When she has a seizure she

> will fall down, mouth and eyes twich and body becomes

> stiff.We tried several medications but nothing seemed

> to work. Phenobar worked for 3 months but her

> behaviour was worse. She is very hyper and we cannot

> control when we take her out.

>

> Right now since 2 months we started Lamictal, my

> observation is that as increase the dose of lamictal

> her seizures increased. Before lamictal they used to

> be once or twice a week but now they are almost every

> day. Doctors are not agreeing with me. Yesterday we

> increased her dose from 50-mg - 62.5mg day and night,

> today she had two grand mal and some small jerks.

>

> Did anyone hear that Lamictal causes seizures?? She is

> alos on Neurontin and topomax. All these medicines are

> doing nothing.

>

> Please help

>

> Thanks

> Sha

>

October 13, 2002

Hi Sha,

Have read Tracey's post about the recommended use of lamictal - I too have

come across so many articles that mirror what she has written.

Many generalised seizure disorders, apart from not being helped by lamictal,

are also instead aggravated by the med. I am 99% sure that when my son (age

5) reached a 'theraputic' lamcital level, that persisting night seizures

were the result.

There are some articles that cite lamictal in generalised epilepsy as being

the cause of the onset of myoclonic seizures (twitches and jerks) which

seems to be what may be happening to your daughter. Any new seizure type

coinciding with a new AED has to be looked at really closely.

is on the ketogenic diet, and on that web ring, there are a number of

parents who found the same thing - increased seizures, often with the onset

of myoclonic jerks.

Some Drs will agree that this is a possibility, others will not, and at

times the experience of other parents can show a pattern that defies

sometimes what we are led to believe.

Anyway, if this trend continues, my advice would be to tell the Dr that you

have heard of this happening to other kids as well, and suggest he recommend

a weaning schedule to help you get her off it.

If he is not supportive, I will try and dig out the article I found about

lamictal aggravating or bringing on myoclonic seizures. I went searching a

few weeks ago and couldn't find it again, but will have another go if need

be.

Hill

PS - Having said all of the above, there are also a lot of people this med

has been useful for, just unfortunately, not us!

We are weaning down now, started the reduction at 400 mgs per day in

Sep last year, now down to 65 mgs per day. We saw withdrawl fallout on day

3-5 of most reductions. He also has 2 other meds on board though, hence the

drawn out weaning process. Some Drs say it is one that can be reduced fairly

quickly, others say it has to be done even slower than when it was built up

to a theraputic dose. I think it was Lamar that said to seek medical advice

if you do decide to wean, I agree 100% - it can be a tricky one, and you

need to know there is support there if anything goes wrong.

Oh, and it can also cause hyper behaviour and night disturbances, was your

daughter hyper before the lamictal?

Last thing - much as I hate depakote (epilim) too (!!), isn't this one

supposed to often be effective for grand mals?

> Hello:

>

> I have a 4year old daughter with epilepsy. Her

> seizures started at teh age of 2.6 years. The seizures

> are grand mal seizures, When she has a seizure she

> will fall down, mouth and eyes twich and body becomes

> stiff.We tried several medications but nothing seemed

> to work. Phenobar worked for 3 months but her

> behaviour was worse. She is very hyper and we cannot

> control when we take her out.

>

> Right now since 2 months we started Lamictal, my

> observation is that as increase the dose of lamictal

> her seizures increased. Before lamictal they used to

> be once or twice a week but now they are almost every

> day. Doctors are not agreeing with me. Yesterday we

> increased her dose from 50-mg - 62.5mg day and night,

> today she had two grand mal and some small jerks.

>

> Did anyone hear that Lamictal causes seizures?? She is

> alos on Neurontin and topomax. All these medicines are

> doing nothing.

>

> Please help

>

> Thanks

> Sha

October 13, 2002

Sha

My daughters seizures increased with Lamictal too . . . the dr told me that

she would be okay as she adjusted to each new dose . . . but I was unconvinced.

Now she is on the keto diet, and I am noticing a reduction in seizures with

each Lamictal reduction, so I would definitely say that Lamictal can cause

worse seizures in some.

Jill

At 01:38 AM 10/14/02, you wrote:

>Hello:

>

>I have a 4year old daughter with epilepsy. Her

>seizures started at teh age of 2.6 years. The seizures

>are grand mal seizures, When she has a seizure she

>will fall down, mouth and eyes twich and body becomes

>stiff.We tried several medications but nothing seemed

>to work. Phenobar worked for 3 months but her

>behaviour was worse. She is very hyper and we cannot

>control when we take her out.

>

>Right now since 2 months we started Lamictal, my

>observation is that as increase the dose of lamictal

>her seizures increased. Before lamictal they used to

>be once or twice a week but now they are almost every

>day. Doctors are not agreeing with me. Yesterday we

>increased her dose from 50-mg - 62.5mg day and night,

>today she had two grand mal and some small jerks.

>

>Did anyone hear that Lamictal causes seizures?? She is

>alos on Neurontin and topomax. All these medicines are

>doing nothing.

>

>Please help

>

>Thanks

>Sha

>

October 14, 2002

LAMAR,

How did you managed to become drug-free ?

Re: [ ] 4 year old daughter with seizures

Sha,

The last drug I was taking before I became drug-free was Lamictal. Of

the drugs I had taken in the past - Dilantin, Phenobarbital, Tegretol

and Lamictal - Lamictal was the least harmful. I think it was also the

newest of those drugs.

However, anytime you go without taking your medication as prescribed you

risk adverse reactions - including seizures.

Why? Because taking prescription drugs for a period of time causes

changes in your body to take place. Your body changes the way it

operates to some extent due to the drug being in your system. If you

suddenly deprive your body of the drug, things may suddenly

short-circuit. That actually happened to me when I went a few days

without taking Tegretol. I ended up collapsing in front of a computer

terminal at work. When I woke up I was in an ambulance on the way to a

hospital.

Take it from someone who learned the hard way, don't decide on your own

not to take your prescribed medication. I became drug-free because I

had the guidance of medical professionals to help me. I did not " play

doctor " with my own health. And, neither should you or anyone else in

this group. Always seek professional guidance. That's why we have

a website set up to help you get all kinds of professional advice via

e-mail - . Please take

advantage of the resources available through all those " Links. "

Good luck.

Lamar

shat345 wrote:

> Hello:

>

> I have a 4year old daughter with epilepsy. Her

> seizures started at teh age of 2.6 years. The seizures

> are grand mal seizures, When she has a seizure she

> will fall down, mouth and eyes twich and body becomes

> stiff.We tried several medications but nothing seemed

> to work. Phenobar worked for 3 months but her

> behaviour was worse. She is very hyper and we cannot

> control when we take her out.

>

> Right now since 2 months we started Lamictal, my

> observation is that as increase the dose of lamictal

> her seizures increased. Before lamictal they used to

> be once or twice a week but now they are almost every

> day. Doctors are not agreeing with me. Yesterday we

> increased her dose from 50-mg - 62.5mg day and night,

> today she had two grand mal and some small jerks.

>

> Did anyone hear that Lamictal causes seizures?? She is

> alos on Neurontin and topomax. All these medicines are

> doing nothing.

>

> Please help

>

> Thanks

> Sha

>

October 14, 2002

Sha,

Lamictal increased my daughter's myoclonic seizures. Every medication

she has been on has had an adverse effect. The doctors don't like to

agree but if you read the inserts that come with the meds many say

they can cause seizures. Some of the medications have even caused

different types of seizures that my daughter usualy doesn't have. It

can be a vicious cycle. All I can say is you know your daughter the

best.

Good luck. I am so sorry for what you are going through.

(Mallorie's mom)

October 14, 2002

Hi Kathy:

I checked for her mercury level and it is 98, ref range is 2.31. My

doctor is suggesting I do chelation for mercury using DMSA and ALA.

B12 and choline function have defeciencies.

I gave my daughter Taurine and GABA but no reduction in seizures.

She is now on Lamictal, Neurontin and topomax. She had already 7

grand mal seizures in the month of october. I am thinking Lamicatal

caused the increase in seizures. I am going to talk to teh doctor

and see what he syas.

Thanks

Sha

> Have you addressed teh following?

> 1. Gut dysbiosis

> 2. Checked for mercury or lead poisining

> 3. Removed all sources (as best you can ) of fortified iron, l-

glutamic

> acid or MSG?

> 4. Checked the immune system panels and subclasses

> 5. Does she have the stealth virus (www.ccid.org )

> 6. Fatty acids-are they converting, what is too overabundant

> 7. Nutritional deficiencies? Mag deficiency? Taurine

Deficiency? B-6

> deficiency?

>

> Kathy

> [ ] 4 year old daughter with seizures

>

> > Hello:

> >

> > I have a 4year old daughter with epilepsy. Her

> > seizures started at teh age of 2.6 years. The seizures

> > are grand mal seizures, When she has a seizure she

> > will fall down, mouth and eyes twich and body becomes

> > stiff.We tried several medications but nothing seemed

> > to work. Phenobar worked for 3 months but her

> > behaviour was worse. She is very hyper and we cannot

> > control when we take her out.

> >

> > Right now since 2 months we started Lamictal, my

> > observation is that as increase the dose of lamictal

> > her seizures increased. Before lamictal they used to

> > be once or twice a week but now they are almost every

> > day. Doctors are not agreeing with me. Yesterday we

> > increased her dose from 50-mg - 62.5mg day and night,

> > today she had two grand mal and some small jerks.

> >

> > Did anyone hear that Lamictal causes seizures?? She is

> > alos on Neurontin and topomax. All these medicines are

> > doing nothing.

> >

> > Please help

> >

> > Thanks

> > Sha

> >

October 14, 2002

Thanks , I am going to talk to the doctor

> Sha,

>

> Lamictal increased my daughter's myoclonic seizures. Every

medication

> she has been on has had an adverse effect. The doctors don't like

to

> agree but if you read the inserts that come with the meds many say

> they can cause seizures. Some of the medications have even caused

> different types of seizures that my daughter usualy doesn't have.

It

> can be a vicious cycle. All I can say is you know your daughter

the

> best.

>

> Good luck. I am so sorry for what you are going through.

>

> (Mallorie's mom)

October 14, 2002

Tracey & Sha,

As a person who was diagnosed with gran mal seizures back in the '60s, I

don't think it is simply the type of seizure that determines the

effectiveness of the medication. I think there are many other factors

to consider. For example, why does the person have epilepsy to begin

with? I know this is not easy to determine. It took me 34 years to

uncover the truth behind my having epilepsy. Then, there may be

specific reasons for seizures to suddenly arise. In my case, not

getting adequate sleep on a regular basis was a factor. Indeed,

sometimes a lifestyle change can make a world of difference in a

person's seizure frequency.

What kinds of medications was I prescribed for my control of gran mal

seizures? First, both Phenobarbital and Dilantin. Next, just Dilatin.

Then, I asked for a change. I read that Dilantin adversely affected

memory recall. (Unfortunately, I learned about this years after my

college education had ended.) I was put on Tegretol. Guess what I

read a few years later? I read that Tegretol adversely affects memory

as well. Then, I was put on Lamictal. At the time I was prescribed the

medication, I was told it was the newest and least harmful of drugs

regarding memory recall. Finally, I was introduced to the

s-Reiter Epilepsy Clinic. I discovered that just about any drug

you take for siezure control has the potential of adversely affecting

your memory. But, I also learned something very encouraging. Not

everyone with epilepsy needs to be medicated. Some people can learn to

control their seizures with little or no medication whatsoever. This

was contrary to everything I believed to be true. The idea that I

medicated my brain for 34 years, spent all kinds of money for check-ups

with a neurologist, EEG's, MRI's, and never really needed it, but in

fact did adversely affect my mental health. For one thing, my

competitveness in the marketplace was hindered. This in turn influenced

my overall quality of life. I was both shocked and amazed by these

revelations. But, you know what they say about hindsight? It's

20/20. Well, I am thankful I finally learned the truth about my

particular situation. Better late than not at all.

Consequently, I encourage others here to learn as much as they can about

their specific situation. Don't stop asking questions. An answer to

one of your questions just might lead to a situation which transforms

your life for the better.

Lamar

Traceygrubbs@... wrote:

> Sha,

> I went to an epilepsy conference yesterday and the speaker the speaker

> was

> saying that some of the medications did not work for certain types of

> seizures. He said that he has seen many people on the wrong type of

> meds for

> their type of seizures which of course equals poor seizure control and

> in

> some cases actually increases the seizures.

> >From waht you described your daughter is having generalized seizures

> without

> a focal point???? Meaning the seizure is all over the brain instead of

>

> starting in one specific area.

> I have a paper right in front of me that states Lamictal is given for

> simple

> partial seizures, complex partial, secondary generalization, Lennox

> Gestaut,

> and sometimes absence seizures. It says nothing about grand mal

> seizures.

> I will list for you the meds it suggests for Generalized tonic clonic

> seizures (grand mal) Phenobarbital, Mysoline, Tegretal, Depakote,

> Celontin,

> Neurontin, Topamax (which in my opinion is not fit for a dog, it left

> my

> child like a zombie), and Cerebyx.

> The rest of the meds listed are for secondary generalization.

> The speaker yesterday was a very knowledgeable man who says that a lot

> of

> neurplogists just are not up to date on what meds to give for certain

> seizure

> types.

> He said that the parent needs to educate themselves in order to

> identify what

> seizure type they are dealing with and familiarize themselves with

> what meds

> work for that seizure.

> He had a lot more to say that I don't mind sharing if anyone is

> interested.

> I hope this helps.

> Tracey

October 14, 2002

Desmond,

If a person has epilepsy, how does he or she become drug-free? You need

the guidance of a medical professional. Every person with epilepsy is a

unique situation. For that reason, you cannot say that because one

person who happened to have epilepsy was able to become " drug-free " that

everyone else with epilepsy should be able to do likewise. The " monkey

see/monkey do " kind of scenario is dangerous. The same applies for the

Ketogenic Diet and the use of vitamin therapy. You need to understand

your specific situation. Don't experiment with your health! It's too

valuable.

Regardless of whether the solution to solving an epileptic problem is

medication, a diet, vitamin therapy, or getting off medication and

making lifestyle changes, gathering information is crucial. For years,

I was simply clueless about my particular epileptic condition. Let's

face it, there is not lot of brainpower required to pop a pill

once-a-day. But, I began to start asking questions when my investment

banking career began to fall apart. And, the fall of my career was

related to the prescription drugs I was taking for seizure control. I

did not know that getting off drugs was an option for me unitl I got

acquainted with s-Reiter . In fact, it would not have happened

were it not for an e-mail message I received from this very groups

a little more than two years ago. Athough the s-Reiter clinic is

located in Santa , CA, the person who initially referred me to the

clinic was a woman in Germany. Since getting acquainted with

s-Reiter, I have been encouraging people to get in touch with

their clinic. In fact, some folks think I work for s-Reiter. Not

true. I am just very grateful to them for helping to transform my life

for the better. That is why I do not hesitate to tell others about

them.

What did s-Reiter do that enabled me to become " drug-free? " First

of all, they made me realize that my being on medication for all those

years may have been a mistake. Once again, keep in mind every person

with epilepsy is unique. The fact that I may have been put on

medication in error does not mean everyone else on drugs is in error,

too. For that reason, I think it is tremendously important to gather

knowledge about one's specific situation. Look at the " big picture "

with regard to your health. There may be both physical and

psychological factors affecting one's epilepsy. Seek out " second

opinions. "

Who can really afford to look at their health with blinders on? Well, I

certainly did for most of my life. Once again, I admit to being rather

" clueless. " It was not until the last few years that I ever challenged

what a doctor recommended for me. Thank God, I finally got around to

asking important questions. Otherwise, I might still be taking

prescription drugs on a daily basis - drugs which facilitated a poor

memory, aggrevating an acne condition and altered my facial countenance.

Rather go into all the specifics, let's just say s-Reiter helped

me through a withdrawl period from the small amount of Lamictal I had

been taking. They also helped me make some lifestyle changes. I take

better care of my health - especially regarding the hours I sleep.

If you have not visited the s-Reiter , I encourage you to do so.

If you ask them questions via e-mail, they will respond.

The clinic does not treat everyone - only those who meet their treatment

protocols. But, even if they cannot help you directly, I think they

would point you in the direction of someone who can. s-Reiter has

a book out called Epilepsy: A New Approach. You should be able to find

it in your local library. The Library of Congress thought the book was

so important, they purchased the entire first edition. If the book is

not available in your local library, I know it is available from

Amazon.com.

I do not mean to sound like a commercial. But, you did ask me the

question about my becoming drug-free. Honestly, I wish I had known 34

years ago what I know now about myself. No doubt, I could be avoided a

great deal of heartache and grief - and not spent money on drugs I did

not need.

Good luck.

Lamar

Desmond Le Fleur wrote:

> LAMAR,

> How did you managed to become drug-free ?

>

> Re: [ ] 4 year old daughter with seizures

>

> Sha,

>

> The last drug I was taking before I became drug-free was Lamictal. Of

>

> the drugs I had taken in the past - Dilantin, Phenobarbital, Tegretol

> and Lamictal - Lamictal was the least harmful. I think it was also

> the

> newest of those drugs.

> However, anytime you go without taking your medication as prescribed

> you

> risk adverse reactions - including seizures.

> Why? Because taking prescription drugs for a period of time causes

> changes in your body to take place. Your body changes the way it

> operates to some extent due to the drug being in your system. If you

> suddenly deprive your body of the drug, things may suddenly

> short-circuit. That actually happened to me when I went a few days

> without taking Tegretol. I ended up collapsing in front of a computer

>

> terminal at work. When I woke up I was in an ambulance on the way to

> a

> hospital.

>

> Take it from someone who learned the hard way, don't decide on your

> own

> not to take your prescribed medication. I became drug-free because I

> had the guidance of medical professionals to help me. I did not " play

>

> doctor " with my own health. And, neither should you or anyone else in

>

> this group. Always seek professional guidance. That's why we

> have

> a website set up to help you get all kinds of professional advice via

> e-mail - . Please take

> advantage of the resources available through all those " Links. "

>

> Good luck.

>

> Lamar

>

> shat345 wrote:

>

> > Hello:

> >

> > I have a 4year old daughter with epilepsy. Her

> > seizures started at teh age of 2.6 years. The seizures

> > are grand mal seizures, When she has a seizure she

> > will fall down, mouth and eyes twich and body becomes

> > stiff.We tried several medications but nothing seemed

> > to work. Phenobar worked for 3 months but her

> > behaviour was worse. She is very hyper and we cannot

> > control when we take her out.

> >

> > Right now since 2 months we started Lamictal, my

> > observation is that as increase the dose of lamictal

> > her seizures increased. Before lamictal they used to

> > be once or twice a week but now they are almost every

> > day. Doctors are not agreeing with me. Yesterday we

> > increased her dose from 50-mg - 62.5mg day and night,

> > today she had two grand mal and some small jerks.

> >

> > Did anyone hear that Lamictal causes seizures?? She is

> > alos on Neurontin and topomax. All these medicines are

> > doing nothing.

> >

> > Please help

> >

> > Thanks

> > Sha

> >

>

October 14, 2002

Lamar:

Does this clinic take children as young as 4 years old?

Thanks

sha

> >

> > > Hello:

> > >

> > > I have a 4year old daughter with epilepsy. Her

> > > seizures started at teh age of 2.6 years. The seizures

> > > are grand mal seizures, When she has a seizure she

> > > will fall down, mouth and eyes twich and body becomes

> > > stiff.We tried several medications but nothing seemed

> > > to work. Phenobar worked for 3 months but her

> > > behaviour was worse. She is very hyper and we cannot

> > > control when we take her out.

> > >

> > > Right now since 2 months we started Lamictal, my

> > > observation is that as increase the dose of lamictal

> > > her seizures increased. Before lamictal they used to

> > > be once or twice a week but now they are almost every

> > > day. Doctors are not agreeing with me. Yesterday we

> > > increased her dose from 50-mg - 62.5mg day and night,

> > > today she had two grand mal and some small jerks.

> > >

> > > Did anyone hear that Lamictal causes seizures?? She is

> > > alos on Neurontin and topomax. All these medicines are

> > > doing nothing.

> > >

> > > Please help

> > >

> > > Thanks

> > > Sha

> > >

> >

October 14, 2002

Sha,

The s-Reiter clinic does not normally work with children younger

than 9 years of age. But, don't let that stop you from visiting the

website and asking questions via e-mail. Keep in mind that

s-Reiter is only one resource out of a great many included on

this group's " Links " website. For example, there is also the

Academy of Neurology. This website enables you to contact neurologists

all over the world via via their website. Therefore, the ability to ask

very specific questions and get qualified answers to them is quite

remarkable here. So, please do not hesitate to put the tool to work at

for your benefit.

Good luck.

Lamar

shat345 wrote:

>

> Lamar:

> Does this clinic take children as young as 4 years old?

>

> Thanks

> sha

>

> > >

> > > > Hello:

> > > >

> > > > I have a 4year old daughter with epilepsy. Her

> > > > seizures started at teh age of 2.6 years. The seizures

> > > > are grand mal seizures, When she has a seizure she

> > > > will fall down, mouth and eyes twich and body becomes

> > > > stiff.We tried several medications but nothing seemed

> > > > to work. Phenobar worked for 3 months but her

> > > > behaviour was worse. She is very hyper and we cannot

> > > > control when we take her out.

> > > >

> > > > Right now since 2 months we started Lamictal, my

> > > > observation is that as increase the dose of lamictal

> > > > her seizures increased. Before lamictal they used to

> > > > be once or twice a week but now they are almost every

> > > > day. Doctors are not agreeing with me. Yesterday we

> > > > increased her dose from 50-mg - 62.5mg day and night,

> > > > today she had two grand mal and some small jerks.

> > > >

> > > > Did anyone hear that Lamictal causes seizures?? She is

> > > > alos on Neurontin and topomax. All these medicines are

> > > > doing nothing.

> > > >

> > > > Please help

> > > >

> > > > Thanks

> > > > Sha

> > > >

> > >

October 15, 2002

Thanks Lamar for the information

> > > >

> > > > > Hello:

> > > > >

> > > > > I have a 4year old daughter with epilepsy. Her

> > > > > seizures started at teh age of 2.6 years. The seizures

> > > > > are grand mal seizures, When she has a seizure she

> > > > > will fall down, mouth and eyes twich and body becomes

> > > > > stiff.We tried several medications but nothing seemed

> > > > > to work. Phenobar worked for 3 months but her

> > > > > behaviour was worse. She is very hyper and we cannot

> > > > > control when we take her out.

> > > > >

> > > > > Right now since 2 months we started Lamictal, my

> > > > > observation is that as increase the dose of lamictal

> > > > > her seizures increased. Before lamictal they used to

> > > > > be once or twice a week but now they are almost every

> > > > > day. Doctors are not agreeing with me. Yesterday we

> > > > > increased her dose from 50-mg - 62.5mg day and night,

> > > > > today she had two grand mal and some small jerks.

> > > > >

> > > > > Did anyone hear that Lamictal causes seizures?? She is

> > > > > alos on Neurontin and topomax. All these medicines are

> > > > > doing nothing.

> > > > >

> > > > > Please help

> > > > >

> > > > > Thanks

> > > > > Sha

> > > > >

> > > >

October 18, 2002

Carrol,

seems to be doing good, thanks for your prayers and thoughts. We are

trying to do some fine tuning with meds and diet.

The doctor that held the epilepsy thing is Mitton. He is a

neuropsycologist, I think, he is from California. I know he used to work here

at CMC but I think I heard him mention California.

Yes you are right, he seemed extremely knowledgeable and made a troumendous

amount of sense, moreso than some neuros I have spoken to.

Tracey

October 18, 2002

Dear Sha,

As I read and reread what you have written here, several thoughts come to mind.

First, I had an increase in seizures on Topamax. The neurologist disagreed with

me until I brought a seizure log and a family member to my appointment with me.

Then she said that she thought the medication was causing the problem, but she

was unwilling to take me off of the medication. I had to find another doctor

because she did not respect me as a person, or my right to have a say in the

medications she tried to force on me. Sometimes the doctors are more interested

in advocating for the pharmaceutical companies than for their patients.

The fact of the matter is that doctors don't know everything. If your instinct

is that medications are causing more seizures, you are probably correct. While

noone in their right mind would recommend that you abruptly stop a seizure

medication, you are absolutely justified in pursuing a doctor who listens to you

and responds to your intellect and intuition. Your daughter is fortunate to

have a mother who is so attune to her needs!

Secondly, doctors don't know how individual medications work, let alone

medications used in concert. A patient can have a drug reaction. They can have

a reaction to a drug to drug interaction. When three drugs are used, there can

be a drug to drug to drug interaction which causes a patient reaction. If there

is a chemical imbalance or a medical condition outside of the parameters of the

medication, there can be another reaction. When several drugs are used

together, the risks increase exponentially.

I am not saying this to scare you, because there are certainly people who use

more than one medication at a time successfully. But, if a doctor tells you

s/he knows exactly how these drugs work individually, let alone together, the

doctor is not honest. Prescription literature from pharmaceutical manufacturers

says on every AED that " the exact mechanism " for the effectiveness of these

drugs " is not known. "

Though I do not, in any way, want to indicate that all people/patients are the

same, I will share that GABA did not work for me, either. Taurine took about

two months to make a difference, but it still does not control my seizures. I

ran out of manganese this past week and immediately had more seizures.

Magnesium yields a very positive result for me, so I don't dare run out of it.

B-12 and a B complex are very important for me. I keep trying one thing at a

time, hoping for a solution. In the meantime, it's a long process.

I'm very convinced that gluten intolerance plays a major role in my seizures.

For some reason, doctors in the US shy away from diagnosing gluten

intolerance/Celiac disease, though it's widely recognized in other countries.

We are becoming more knowledgeable about it now, but some people go a lifetime

before learning that their intestines are so compromised they cannot assimilate

nutrients. If your daughter has frequent gastro-intestinal symptoms, you may

want to visit a qualified GI doctor to find out if Celiac disease could be a

problem for her, as well.

Hang in there! We're all in this together, and the people in this group have

been there and back again. I cherish the information I've gotten from this

group. It has kept me from many a disaster! I hope that something I said makes

sense for you and helps!

Best wishes,

Carrol

shat345 <shalinithondamuthur@...> wrote:Hi Kathy:

I checked for her mercury level and it is 98, ref range is 2.31. My

doctor is suggesting I do chelation for mercury using DMSA and ALA.

B12 and choline function have defeciencies.

I gave my daughter Taurine and GABA but no reduction in seizures.

She is now on Lamictal, Neurontin and topomax. She had already 7

grand mal seizures in the month of october. I am thinking Lamicatal

caused the increase in seizures. I am going to talk to teh doctor

and see what he syas.

Thanks

Sha

> Have you addressed teh following?

> 1. Gut dysbiosis

> 2. Checked for mercury or lead poisining

> 3. Removed all sources (as best you can ) of fortified iron, l-

glutamic

> acid or MSG?

> 4. Checked the immune system panels and subclasses

> 5. Does she have the stealth virus (www.ccid.org )

> 6. Fatty acids-are they converting, what is too overabundant

> 7. Nutritional deficiencies? Mag deficiency? Taurine

Deficiency? B-6

> deficiency?

>

> Kathy

> [ ] 4 year old daughter with seizures

>

> > Hello:

> >

> > I have a 4year old daughter with epilepsy. Her

> > seizures started at teh age of 2.6 years. The seizures

> > are grand mal seizures, When she has a seizure she

> > will fall down, mouth and eyes twich and body becomes

> > stiff.We tried several medications but nothing seemed

> > to work. Phenobar worked for 3 months but her

> > behaviour was worse. She is very hyper and we cannot

> > control when we take her out.

> >

> > Right now since 2 months we started Lamictal, my

> > observation is that as increase the dose of lamictal

> > her seizures increased. Before lamictal they used to

> > be once or twice a week but now they are almost every

> > day. Doctors are not agreeing with me. Yesterday we

> > increased her dose from 50-mg - 62.5mg day and night,

> > today she had two grand mal and some small jerks.

> >

> > Did anyone hear that Lamictal causes seizures?? She is

> > alos on Neurontin and topomax. All these medicines are

> > doing nothing.

> >

> > Please help

> >

> > Thanks

> > Sha

> >

October 18, 2002

Dear Tracey,

How is doing with the keto diet? I keep thinking of you and praying for

you as you go through all of this!

What you wrote below makes a lot of sense to me. What is the doctor's name who

said these things? It sounds like he has more sense than many doctors I've seen

lately! :-)

Best wishes,

Carrol

Traceygrubbs@... wrote:Never mind that question (it was stupid) I know you

all are interested so let