Re: Chelating with a Seizure Disorder

[Guest guest]

I believe pertussis is also big one for seizures. I

wonder how jaundice of a newborn would play in here.

--- kerbob1 <robertbloch@...> wrote:

> You mention vaccines. That's interesting because the

> recent Poling

> concession made by the Department of Health and

> Human Services legal-

> medicos included the additional nod that her

> vaccines relate to seizure

> disorder that developed/became more pronounced when

> Hannah was six.

>

> I have looked around the different seizure orgs. and

> learned that virus

> infections such as measles, chicken pox, etc. store

> up in the nerves

> for later on.

>

> Doctors are often quick to ask questions about

> Chicken pox and Chicken

> pox vaccination, for example, after a child has had

> a seizure because

> they are a known cause.

>

>

> >

> > Thank you for your concern in this matter. At

> times I feel like I am

> > swimming upstream.

> >

> > My daughter has had tonic clonic seizures from the

> beginning. At first

> > she was able to tell us that she had multiple

> thoughts, left hand

> > would shake, head would turn to the left and she

> was down for as long

> > as 5 min. Her seizures then remained as typical

> tonic clonic, only

> > that she could not remember what occurred previous

> to the seizure.

> > Lately since she has started the neurofeedback, we

> see a change back

> > to the complex partial seizures and then nothing

> more. She has only

> > had one status seizure and that was after

> consuming a large dose of

> > candy. I do believe there has been a connection

> with certain

> > ingredients in processed foods.

> > > >

> >

>

>

>

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[Guest guest]

In a message dated 4/5/2008 10:48:39 P.M. Pacific Daylight Time,

mercury@... writes:

Carla - I'm really glad he's making progress!

I'll mention, in case you want to consider the diet earlier, that some

literature I was reading from a guy at s Hopkins who has been looking into

the

ketogenic diet recently, indicates that once on it for a period of time (I'd

have to check for how long), some 25% of kids can return to a normal diet

and be seizure free. Others have to go on the diet for a period of time every

year, but can eat regular diet the rest of the year. Apparently the idea of

all this came from some very old lore about how fasting once a year can control

seizures. It's so old that I'm told it's even mentioned in the bible. The

medical idea of a high fat, adequate protein, minimal carbohydrate diet was to

mimic a fast.

Dave.

Thanks, Dave.

I'll look further into this. This may be a good option for him. Maybe I

can try it over the summer when he's out of school. I think I'll definitely

look into giving it a try. Thanks, again!

Carla

Carla DeMaci

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[Guest guest]

Well, there is nothing polite to say about the neurologists you saw.

I agree, PNES (being crazy and making it up) would seem to be rather

inconsistent with an

abnormal EEG and MRI.

While dietary connections to epilepsy aren't mainstream, catamenial seizures ARE

and are

discussed in all standard neurology books. Functional illiteracy does seem to

be part of

the MD experience, unfortunately.

You might try Lee's books on hormone balancing and what your doctor might

not

have told you about premenopause to see if they're at all helpful in sorting out

how to

handle her hormones. She'll need to be able to do it for herself in the future.

The heterotopia can be the source of the seizures though it seems interesting

that they'd

only have onset after puberty, and also be time of day related. If it is the

heterotopia then

medications supposedly are not helpful. Just like diet is supposedly not

helpful.

In looking over the typical medication chart Depakote (valproic acid) would make

some

sense as one to try if you do decide to go that way again. Sometimes lower than

normal

doses are adequate, other times the full (sedating, liver stressing) amount is

really needed.

And of course it might not help. I'm actually surprised they didn't try it (or

the Lamictal)

earlier than they did.

Neurofeedback should be exactly what would help the most if the heterotopia is

really the

cause of it all. She just has to learn to use the little part of her brain that

is out of place

differently than the rest of us do who have it in the right place.

Given the time issue I would be very suspicious of what unrecognized seizure

trigger she

is running in to at school. Changing her routine, feeding her on a different

schedule,

going to a different set of classrooms or working out in a different location

might solve a

lot of problems. Might not. Consider the possibility of unrecognized chemical

sensitivity

being a seizure trigger.

If you have good records of when she had seizures it may be possible to do some

statistics

to see if she has them on weekends with the same frequency as on weekdays (you'd

have

to account for her female cycle and the work week as well to do this). That

might help

decide if you are looking for a trigger at school.

Constipation does affect brain function and impaired cognition and migraines are

known

to flow from it, and also people with mental illness typically become much more

symptomatic while constipated.

Mercury is probably against the neurologist's religion but you can ask and see

if steam

shoots out his ears.

Did anyone talk about genetics with the heterotopia? Sometimes those have

genetic

components. Is the evidence for it definitive?

Puberty is a common event that either brings or gets rid of seizures. While a

lot of seizure

disorder most likely is toxicity (all the epileptics I've seen work ups on were

toxic) it is

entirely possible the heterotopia is the only cause - or it might just make her

more

sensitive to toxins.

If you chelate her be aware the most likely side effect is going to be seizures.

Start low

and slow. Talk to her about how she feels while doing it. Of course make sure

she has no

amalgam fillings in her teeth before you start! And even if you chelate and she

is fine

don't let her get any of those. Also no more vaccines no matter what anyone

says about

how totally safe they are.

Adrenal support may well be helpful here - the stress of working out may be a

trigger, and

imrpoving her physiologic adaptation to stress may fix that. The simplest form

of adrenal

support is adrenal cortex.

If the MRI report says exactly where the heterotopia is I can give you a list of

behavior

problems it should cause if it is actually affecting her. If she sounds like

that, it is more

likely involoved, if not, more likely just toxicity. Of course it could well be

both and have

all the behavioral effects.

Hope this helps.

Andy

> > >

> > > We tried four AEDs with terrible results, and side effects.

> > > Tegretol XR, Gabapentin, Lamictal, Trileptal

> >

> > Whomever prescribed didn't seem to have much of a clue, if you don't

> tolerate tegretol

> > there is no possiblity you'll tolerate trileptal.

> >

> > I don't remember if you said which KIND of seizures? Absence? That

> does get worse if

> > you give people tegretol or trileptal. It is the " staring " kind,

> where they freeze, not a kind

> > where they move around.

> >

> > > I believe the seizures were increased on a few. She has had fewer

> > > seizures since being off all prescription drugs. She takes an increase

> > > in many vitamins and minerals at this time. For the catamenial

> > > seizures she is using a bio-identical hormone. In addition she is

> > > Gluten free, Casein free, Soy free, and Corn free. Preservative free

> > > as well.

> > >

> > > I am sorry that you feel I am not acting in her best interest,

> >

> > Reminding me of her story (I think you told it before) makes me a

> lot less concerned about

> > this. I was responding to it sounding like other people who decided

> " drugs " are " bad " and

> > never try them. You've tried them. While in theory you could try

> all the rest, it is not at all

> > clear that is worthwhile even if they didn't turn your daughter into

> a zombie, which most

> > of them will do.

> >

> > > as I

> > > have spent the last two years researching her needs. I have had little

> > > if no help from our traditional doctors.

> > >

> > > There is the fact that after two AEDs the % control that the next meds

> > > will be helpful is less with each trial.

> >

> > Yes. That is the superstition. It is somewhat true if they are

> prescribed rationally.

> >

> > > The quality of life for a

> > > young lady has been horrific on the meds. I feel I finally have my

> > > daughter back, and the seizures are being reduced.

> > >

> > > We are doing a trial of neurofeedback, but I was hopeful to try

> > > chelation on her, as her tests seem to some to be high. Perhaps that

> > > is not something that I can consider, until we raise her seizure

> > > threshold.

> >

> > The rule of thumb in chelation is that whatever is the most

> bothersome problem will be

> > exacerbated while on round. This is not guaranteed to happen but is

> quite common. For

> > her of course it is seizures.

> > >

>

[Guest guest]

I was diagnosed with neurocardiogenic syncope after my second child. I would

faint. I did a tilt-table test and passed out and that's when they diagnosed

me. My applied kinesiologist found that it was actually due to a virus

holding on to metals. He had me for 30 days on a combination of

herbs/vitamins/minerals and my blood pressure got back to normal (my

understanding is that neurocardiogenic syncope sufferers always have low

blood pressure) and I haven't fainted since.

Just thought I'd write in my experience in case it helps anyone...

traditional medecine had no answers for me but alternative medecine cured me

in 30 days...

....

On Sun, Apr 6, 2008 at 4:52 PM, <Ladyshrink111@...> wrote:

> If this is neurocardiogenic syncopy, ours had it, in reaction to severe

> pain. If she fell too hard, she'd get up and then faint. It is usually a

> cal/mag imbalance as in too much calcium and not enough magnesium,

> increasing magnesium or keeping it even with calcium solved the problem

> here, no more fainting spells for 1.5 years.

>

> These freaked me out.

>

>

>

> [ ] Re: Chelating with a Seizure Disorder

>

> You know this might be neurocardiogenic syncope. That might explain

> things like no seizures when active. The mechanism is that of a

> faint. As blood and oxygen flow to the brain diminish there is

> seizure activity. Usually the person wakes up upon falling to the

> ground, while many people are wiped out after a spell you can pick

> yourself up and keep going.

>

> If the postictal phase is absent or short I'd look into this. A

> electrophysiologist cardiologist can do a tilt table test to see if

> this is the mechanism. The good news is that if this is the cause a

> very low dose beta blocker medication like Inderal may help. Staying

> well rested and well hydrated are also helpful as well as keeping

> active and avoiding high anxiety, hot stressful situations where you

> have to stand still like standing on risers to sing with the glee

> club or reading in front of the class or getting married in front of

> a full church. You know the things that can make anyone feel faint.

>

> Many muscians take Inderal for this reason.

>

> Chris

>

>

> > >

> > > It was suggested that I explain a little more about when the

> seizures

> > > are occurring.

> > >

> > >

> > > Places where they have occurred:

> > > Home

> > > Different classrooms (newly remodeled school)

> > > Hallway (alone and with other students)

> > > Outdoors (snack, lunch)

> > > Auditorium after a dress rehearsal for dance

> > > Skating rink (after practice) never while moving or so it seems

> > >

> > > I can't find a connection to " place "

> > >

> > > Connection has been made to foods such as:

> > > Energy drinks

> > > MSG

> > > HFCS

> > > junk processed

> > >

> > > ..not always but sometimes

> > >

> > > Connection to energy level but not necessarily sleep,

> > > Hormones, constipation, lack of H20

> > >

> > > Thanks again

> > > Robin

> > >

> >

>

>