Re: Between a rock and a hard place

[Guest guest]

I hope it won't make you feel too terrible to point out that the reason I harp

on proper

chelation so much is that it is crucially important to do it right and avoid

doing it wrong.

In the long term, there is no alternative to a very long period of proper

chelation.

In the short term you are going to have to get his seizures more well

controlled. This

probably means finding a real doctor (there are a few - very few - around, and

their

specialty isn't important) who can help you go through the slow and painful

process of

trying different epilepsy medications until you find one or two that really work

for him.

It is very common in doing this to end up with him on some meds that don't help

and fail

to withdraw them. You have to be careful to get him OFF any meds he does not

need.

A lot of his situation soiunds like the liver and metabolic effects of these

drugs, coiupled

with mercury problems.

Most likely he has some chemical sensitivity. Do anything and everything you

can to

support liver health. Depakote is notorioiusly liver toxic.

BTW, if they saw generalized diffuse slowing on the EEG that is also consistent

with

toxicity from things like heavy metals, not just the drugs.

The Atkins diet or Keto diet is a possible choice. If he has adrenal problems

he won't be

able to tolerate it.

This is going to be a very long, slow, difficult process. It will be quite easy

to find

irresponsible people who will promise you the world and mess him up even worse

than he

is now. They're called doctors, and they will offer you things like

inappropriate chelation,

iv glutathione or phosphatidylcholine or other random stuff, be very charismatic

and

assure you it will be fine. It won't. You have to do the right thing. These

doctors will

apply emotional pressure to you until they manage to hit your panic button and

get you to

agree to something. Fear and panic are your enemies. You always have time to

go away

and spend a week deciding. If you are having fear, anxiety and panic, you need

to get

yourself appropriate care before you really work on much with your son beyond

adding

some antiseizure meds.

Andy

>

> My 12 y.o. son has the regular multitude of issues.

>

> We've chelated overly aggressively over the years. We were doing IV chelation

last year ,

but stopped in February after having a lot of seizures. We continued

transdermal DMPS,

but took a break from that in July also due to reoccurring seizures.

>

> We used ALA and DMSA five plus years ago, but Liam has always battled

constipation

and are concerned about redistribution issues. HE then did just DMSA for a few

years.

But in hindsight the dosage was too high.

>

> He has had a history of seizures after starting him on seizure meds after an

abnormal

EEG . After we saw no benefits from the meds, we tried to pull him off and he

had his

first Grand mal shortly afterwards.

>

> In Dec. 2004, the neurologist suggested we up his dosage, due to growth. Soon

afterwards, he started a piercing scream. We lowered the dosage and the scream

went

away. His seizures seemed to be under control with a depakote/kepra combo. In

July if

2005 we had another EEG, which showed low brain function, presumably due to the

meds.

He also would have tremors, but no seizure activity.

>

> In Aug. 2005 we started with another Dr. IV chelation and began to wean him

off of his

seizure meds. Immediately afterwards, the high pitched scream returned and is

something we have battled consistently since then.

>

> At times I thought it was yeast related, so I upped the yeast protocol with

GSE, Oil of

Oregano and Tea Tree oil on his feet at night. That seems to help for a while,

but then we

had a different type of rash. Perhaps, the GSE was too high and created high

bacteria

levels?

>

> We stopped the GSE and didn't do the Tea tree oil for a few days , then we

had a huge

yeast flare up, big rash, severe mood swings,etc.

>

> Christmas Eve through Wed., he was having a rough time. The screams were

extreme

and would last 10-20 seconds. Then there was some extreme aggression. Mostly,

you

could see him trying to control it, but then he just couldn't. Although one of

the instances

seemed to be triggered something he ate.

>

> Wed. night he was very clingy and couldn't fall asleep despite melatonin and

was shaky.

Sure enough yesterday was filled with seizures.

>

> I'm not sure of the next step to help him, we were using Magnesium Citrate to

help with

constipation, but he is now reacting to it. We'd like to low dose chelate with

ALA, but I'm

concerned with constipation, yeast and seizure activity.

>

> He's a viral kid and we're using OLE. He was on a fairly high dose of

Virastop, but of

course built an intolerance. Whenever we try to add more than 2000 mg of Vit. C

he

seems to react to the brand. We are now trying a brand that has absolutely no

corn, it is

too soon to change dosage.

>

> We were giving him Advil to help with sinus pain and allergies over the fall,

but he built

up an intolerance to that as well. WE now give Tylenol when he is in great

pain, but try to

avoid it. We were using some homeopathic remedies, but we are seeing a

homeopath for

the seizure activity, so we aren't supposed to introduce other remedies in the

mix.

>

> I believe he is mineral toxic, so he is on some liquid Magnesium and Selenium.

He is

also on some zinc

>

> Otherwise he is on Some B-vits., 5-HTP, Oil of Oregano and NAC. WE upped his

Depakote from 250 to 375 mg., but he has been having seizures more frequently,

since

this dose.

>

> He is Corn, Soy, Rice, Egg, and Dairy free. He has small amounts of wheat,

since he

doesn't seem to react to small amounts of that (observation as well as testing).

WE limit

phenols and we've tried to re-introduce some almonds with enzymes. Currently,

we give

enzymes with dietary infractions.

>

> We haven't done any testing recently and at times he is doing well. But the

scream

frequency and seizures are worrisome. Any thoughts???

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Andy,

Why is Phosphatidyl Choline bad? Is Phosphatidyl Serine bad too.

On 12/29/06, andrewhallcutler <AndyCutler@...> wrote:

>

> I hope it won't make you feel too terrible to point out that the reason

> I harp on proper

> chelation so much is that it is crucially important to do it right and

> avoid doing it wrong.

>

> In the long term, there is no alternative to a very long period of proper

> chelation.

>

> In the short term you are going to have to get his seizures more well

> controlled. This

> probably means finding a real doctor (there are a few - very few - around,

> and their

> specialty isn't important) who can help you go through the slow and

> painful process of

> trying different epilepsy medications until you find one or two that

> really work for him.

>

> It is very common in doing this to end up with him on some meds that don't

> help and fail

> to withdraw them. You have to be careful to get him OFF any meds he does

> not need.

>

> A lot of his situation soiunds like the liver and metabolic effects of

> these drugs, coiupled

> with mercury problems.

>

> Most likely he has some chemical sensitivity. Do anything and everything

> you can to

> support liver health. Depakote is notorioiusly liver toxic.

>

> BTW, if they saw generalized diffuse slowing on the EEG that is also

> consistent with

> toxicity from things like heavy metals, not just the drugs.

>

> The Atkins diet or Keto diet is a possible choice. If he has adrenal

> problems he won't be

> able to tolerate it.

>

> This is going to be a very long, slow, difficult process. It will be quite

> easy to find

> irresponsible people who will promise you the world and mess him up even

> worse than he

> is now. They're called doctors, and they will offer you things like

> inappropriate chelation,

> iv glutathione or phosphatidylcholine or other random stuff, be very

> charismatic and

> assure you it will be fine. It won't. You have to do the right thing.

> These doctors will

> apply emotional pressure to you until they manage to hit your panic button

> and get you to

> agree to something. Fear and panic are your enemies. You always have time

> to go away

> and spend a week deciding. If you are having fear, anxiety and panic, you

> need to get

> yourself appropriate care before you really work on much with your son

> beyond adding

> some antiseizure meds.

>

> Andy

>

>

> >

> > My 12 y.o. son has the regular multitude of issues.

> >

> > We've chelated overly aggressively over the years. We were doing IV

> chelation last year ,

> but stopped in February after having a lot of seizures. We continued

> transdermal DMPS,

> but took a break from that in July also due to reoccurring seizures.

> >

> > We used ALA and DMSA five plus years ago, but Liam has always battled

> constipation

> and are concerned about redistribution issues. HE then did just DMSA for a

> few years.

> But in hindsight the dosage was too high.

> >

> > He has had a history of seizures after starting him on seizure meds

> after an abnormal

> EEG . After we saw no benefits from the meds, we tried to pull him off and

> he had his

> first Grand mal shortly afterwards.

> >

> > In Dec. 2004, the neurologist suggested we up his dosage, due to growth.

> Soon

> afterwards, he started a piercing scream. We lowered the dosage and the

> scream went

> away. His seizures seemed to be under control with a depakote/kepra combo.

> In July if

> 2005 we had another EEG, which showed low brain function, presumably due

> to the meds.

> He also would have tremors, but no seizure activity.

> >

> > In Aug. 2005 we started with another Dr. IV chelation and began to wean

> him off of his

> seizure meds. Immediately afterwards, the high pitched scream returned and

> is

> something we have battled consistently since then.

> >

> > At times I thought it was yeast related, so I upped the yeast protocol

> with GSE, Oil of

> Oregano and Tea Tree oil on his feet at night. That seems to help for a

> while, but then we

> had a different type of rash. Perhaps, the GSE was too high and created

> high bacteria

> levels?

> >

> > We stopped the GSE and didn't do the Tea tree oil for a few days , then

> we had a huge

> yeast flare up, big rash, severe mood swings,etc.

> >

> > Christmas Eve through Wed., he was having a rough time. The screams were

> extreme

> and would last 10-20 seconds. Then there was some extreme aggression.

> Mostly, you

> could see him trying to control it, but then he just couldn't. Although

> one of the instances

> seemed to be triggered something he ate.

> >

> > Wed. night he was very clingy and couldn't fall asleep despite melatonin

> and was shaky.

> Sure enough yesterday was filled with seizures.

> >

> > I'm not sure of the next step to help him, we were using Magnesium

> Citrate to help with

> constipation, but he is now reacting to it. We'd like to low dose chelate

> with ALA, but I'm

> concerned with constipation, yeast and seizure activity.

> >

> > He's a viral kid and we're using OLE. He was on a fairly high dose of

> Virastop, but of

> course built an intolerance. Whenever we try to add more than 2000 mg of

> Vit. C he

> seems to react to the brand. We are now trying a brand that has absolutely

> no corn, it is

> too soon to change dosage.

> >

> > We were giving him Advil to help with sinus pain and allergies over the

> fall, but he built

> up an intolerance to that as well. WE now give Tylenol when he is in great

> pain, but try to

> avoid it. We were using some homeopathic remedies, but we are seeing a

> homeopath for

> the seizure activity, so we aren't supposed to introduce other remedies in

> the mix.

> >

> > I believe he is mineral toxic, so he is on some liquid Magnesium and

> Selenium. He is

> also on some zinc

> >

> > Otherwise he is on Some B-vits., 5-HTP, Oil of Oregano and NAC. WE upped

> his

> Depakote from 250 to 375 mg., but he has been having seizures more

> frequently, since

> this dose.

> >

> > He is Corn, Soy, Rice, Egg, and Dairy free. He has small amounts of

> wheat, since he

> doesn't seem to react to small amounts of that (observation as well as

> testing). WE limit

> phenols and we've tried to re-introduce some almonds with enzymes.

> Currently, we give

> enzymes with dietary infractions.

> >

> > We haven't done any testing recently and at times he is doing well. But

> the scream

> frequency and seizures are worrisome. Any thoughts???

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

,

Just some thoughts as I read through your post.

We've dealt with seizures since our 22 year old was 9. Diet has been

the BEST control that I've found. Both gluten and casein will

trigger seizures-not immediate but usually in 12+ hours. Soy,

peanut, chocolate among others make her very irritable. It looks

like very bad behavior to others. In my mind, it is 'pre-seizure.'

For the pre-seizure episodes, I give her a tablet of alka seltzer

gold, limit solid foods and keep her well hydrated with water. The

alka selzer gold will sometimes produce a turnaround in about 20

minutes. Sometimes a followup with 3-4 tablets of charcoal will

help. Epsom salt and baking soda baths also will calm. Keeping a

food diary helped as the reactions are not all immediate.

Depakote was a huge disaster for our daughter. A second opinion when

she was about 12 caused us to change from carbamazepine[tegretol] to

depakote. The depakote seemed to trigger seizures. They would appear

in 1-1.5 hours after dosing. Depakote also changed the character of

her seizures - they became much more severe and ended with complete

collapse and her turning blue. After a short course of this med, we

went back to the tegretol. When she was 16, I found the gfcf

information and we were able to reduce meds considerably over time

just by keeping her diet pure. However, the seizures, when they do

come, have remained more severe appearing. Do you think that the

change for your son is related to the Depakote? Our daughter is

verbal and can tell us that she has a 'really bad headache!' She

usually ends up a bout of seizures with a few hours of headache. Do

you think that the screams may be related to headache/pain?

For the most part, we have followed the chelation protocol here and

have seen no increase in seizures related to chelation per se. I

would encourage you to look at a less aggressive protocol than the

IV ones. Our daughter also has been constipated since day 1.

Magnesium oxide on a daily basis works well for her. I dose

depending on how her stools for the day look; but she always gets at

least 500mg[120#] at bedtime in addition to any other magnesium she

takes. She only tolerates the Sago palm vit C,[Twin Labs Allergy C

is the brand I use]. Other things that we've experienced -GSE lead

to enough 'bad behavior' that I quit trying it. A recent allergy

work up showed a significant response to grapefruit; the soy

component[nattokinase is fermented soy] in Virastop was enough to

produce the same behavioral response at 2 caps per day along with a

very bad rash; 5-HTP produced a 'wild child' here but she tolerates

tryptophan and takes it nightly; NAC[cysteine?]-do you know that

he's not high cysteine? On the diet front, low oxalate has been

helpful. Do you have a recent hair test that you could post? I'm

sorry about the seizures. They are the pits!! for child and

parents!!

>

> My 12 y.o. son has the regular multitude of issues.

>

> We've chelated overly aggressively over the years. We were doing

IV chelation last year , but stopped in February after having a lot

of seizures. We continued transdermal DMPS, but took a break from

that in July also due to reoccurring seizures.

>

> We used ALA and DMSA five plus years ago, but Liam has always

battled constipation and are concerned about redistribution issues.

HE then did just DMSA for a few years. But in hindsight the dosage

was too high.

>

> He has had a history of seizures after starting him on seizure

meds after an abnormal EEG . After we saw no benefits from the

meds, we tried to pull him off and he had his first Grand mal

shortly afterwards.

>

> In Dec. 2004, the neurologist suggested we up his dosage, due to

growth. Soon afterwards, he started a piercing scream. We lowered

the dosage and the scream went away. His seizures seemed to be

under control with a depakote/kepra combo. In July if 2005 we had

another EEG, which showed low brain function, presumably due to the

meds. He also would have tremors, but no seizure activity.

>

> In Aug. 2005 we started with another Dr. IV chelation and began to

wean him off of his seizure meds. Immediately afterwards, the high

pitched scream returned and is something we have battled

consistently since then.

>

> At times I thought it was yeast related, so I upped the yeast

protocol with GSE, Oil of Oregano and Tea Tree oil on his feet at

night. That seems to help for a while, but then we had a different

type of rash. Perhaps, the GSE was too high and created high

bacteria levels?

>

> We stopped the GSE and didn't do the Tea tree oil for a few

days , then we had a huge yeast flare up, big rash, severe mood

swings,etc.

>

> Christmas Eve through Wed., he was having a rough time. The

screams were extreme and would last 10-20 seconds. Then there was

some extreme aggression. Mostly, you could see him trying to control

it, but then he just couldn't. Although one of the instances seemed

to be triggered something he ate.

>

> Wed. night he was very clingy and couldn't fall asleep despite

melatonin and was shaky. Sure enough yesterday was filled with

seizures.

>

> I'm not sure of the next step to help him, we were using Magnesium

Citrate to help with constipation, but he is now reacting to it.

We'd like to low dose chelate with ALA, but I'm concerned with

constipation, yeast and seizure activity.

>

> He's a viral kid and we're using OLE. He was on a fairly high

dose of Virastop, but of course built an intolerance. Whenever we

try to add more than 2000 mg of Vit. C he seems to react to the

brand. We are now trying a brand that has absolutely no corn, it is

too soon to change dosage.

>

> We were giving him Advil to help with sinus pain and allergies

over the fall, but he built up an intolerance to that as well. WE

now give Tylenol when he is in great pain, but try to avoid it. We

were using some homeopathic remedies, but we are seeing a homeopath

for the seizure activity, so we aren't supposed to introduce other

remedies in the mix.

>

> I believe he is mineral toxic, so he is on some liquid Magnesium

and Selenium. He is also on some zinc

>

> Otherwise he is on Some B-vits., 5-HTP, Oil of Oregano and NAC.

WE upped his Depakote from 250 to 375 mg., but he has been having

seizures more frequently, since this dose.

>

> He is Corn, Soy, Rice, Egg, and Dairy free. He has small amounts

of wheat, since he doesn't seem to react to small amounts of that

(observation as well as testing). WE limit phenols and we've tried

to re-introduce some almonds with enzymes. Currently, we give

enzymes with dietary infractions.

>

> We haven't done any testing recently and at times he is doing

well. But the scream frequency and seizures are worrisome. Any

thoughts???

>

>

>

>

>

>

>

>

>

>

>

>

>