Re: eeg results/future plans

August 3, 2007

The neuro sounds like he was actually helpful and knew what he was doing, a real

rarity!

I could come up with lots of explanations but I don't think any of them are a

lot more

probable than any others so you'll have to do some experimenting to figure out

what is

going on or at least what works.

It could be " stimming, " which is voluntary wierd behavior. The neuro might call

that a

mannerism. Vitamin A in adequate amounts often reduces or corrects this, as

sometimes

will zinc or magnesium or B6.

It could be some seizure like think the eeg can't detect, in which case gaba

will suppress

it. Gaba also reduces excitement which might confuse you.

It could be some sort of muscle spasm. Sounds unlikely but that might relate to

electrolytes.

I'd suggest more talking with your granddaughter probably over an extended

period of

many conversations to try to figure out what it is and see if you can convince

her that she

shouldn't do it and see if she has voluntary control over it.

As far as ALA goes it is possible chelation is amplifying this, or perhaps has

nothing to do

with it. The only way to find out is try it. If you are particularly worried

about it, maybe

half the amount and a shorter time period (e. g. 3 hours day and night, or even

2.5 hours

day and night).

To promote normal neurological health you are not going to go wrong with lots of

omega

3 and vitamin E, say a tablespoon a day of flax oil (if you have a lot of irish

ancestry use

fish oil in half that amount as some irish people don't convert the flax oil

alpha linolenic

acid to active DHA and EPA) or fish oil if you prefer, and 1000+ IU of natural E

daily.

Speaking of the E, check what form she is getting and make sure it doesn't start

with dl-

blah blah blah, that's the synthetic stuff and it can make some people

" twitchy. "

Andy

>

> Andy and others,

>

> We got our eeg on Tuesday and today, Thursday met with the pediatric

neurologist. We

were able to reproduce the movement she has been doing while excited during the

eeg.

However, the eeg was entirely normal.

>

> We have the written interpretive report which states " The EEG contained 30-50

microvolt

8-10 cps activity in the occipital leads bilaterally, central, pariental and

frontal leads

contained similiar activity. There was a small amount of movement, eye movement

and

muscle artifact. "

>

> History of neurological status: When patient gets excited and is very tired,

she stiffens

arms and makes odd movements with her hands. She said her head felt " twitchy " .

This

started approximately 3 months ago but is more frequent now. No family history

of

seizures. She has a vasovagal response to pain. Normal gestation, breech

presentation and

delivery by C- section.

>

> Sleep was not recorded

> Hyperventilation caused no pathological change

> Photic stimulation caused no pathological change

> There were no focal or epileptiform abnormalities

>

> INTERPRETATION: Normal EEG

>

> The ped neuro said that he has never in his 25 years of practice seen or heard

of a child

who had seizures only while being excited. He also said the episodes we reported

did not

last long enough to be seizure related. He said if it was a tic it would be

repeated 100's of

time each day, which it is not. We had a videotape of the episode and he watched

it and

pronouned it a " mannerism " , like twirling your hair. I actually watched the

entire eeg and

when she did the movement I saw a slight dip in the eeg, asked the ped neuro

resident

about it and he pointed out that it looked like any other movement on the eeg,

like when

she yawned or scratched her arm, and he's right, it did.

>

> So that is the good news, I think. However, I have been watching this

movement, which

have changed and morphed over the last few weeks. We have done no further rounds

for

the last 4 weeks. At first we noticed the movement described above, stiff arms,

then it

changed into arm and hand flapping (which she NEVER, EVER did before) that is

gone

now, thank goodness, and now we have the arm stiffening with finger movement. I

can't

say it's gotten any worse.

>

> I'm beginning to wonder about a lot of things, but 2 specifically, the first

being; is this

some kind of redistribution? She did complain the very last round of one of

her hands

being numb on one side? I have to ask....Is it possible the Ala caused some

kind of

damage? Or is this really just a mannerism?

>

> Her cognition, language, thought processes and social interactions continue to

be

stellar, as they have been for the past year, but this clearly seems

neurological to me,

although the ped neuro says " no " . And how to proceed from here? I can say that

noone is

anxious to give her anymore Ala anytime soon feeling that the Ala is largely

responsible

although it's possible this " mannerism " would have appeared on it's own, apart

from the

Ala.

>

> I know it is not anyone's duty to talk us into further chelation or anything

else but I was

hoping for a dialogue about any odd reactions to Ala you have witnessed

previously that

might give us a clue as to what happened and where to go from here. I watched

her fall

asleep tonight thinking that we all want to do right by her, but what? Is there

any value/

point in just doing Dmsa rounds at this point?

>

> How do you proceed, if Ala suddenly becomes " off limits " ? We have chelated

for over

2.5 years and have done about 115 rounds, do we just stop and see what happens?

I have

always been a plan your work, work your plan person, but I'm stumped here. I

have

thought about this so much I think my head is going to pop off.

>

> Thanks for any ideas, thoughts,

>

August 3, 2007

The neuro sounds like he was actually helpful and knew what he was doing, a real

rarity!

I could come up with lots of explanations but I don't think any of them are a

lot more

probable than any others so you'll have to do some experimenting to figure out

what is

going on or at least what works.

It could be " stimming, " which is voluntary wierd behavior. The neuro might call

that a

mannerism. Vitamin A in adequate amounts often reduces or corrects this, as

sometimes

will zinc or magnesium or B6.

It could be some seizure like think the eeg can't detect, in which case gaba

will suppress

it. Gaba also reduces excitement which might confuse you.

It could be some sort of muscle spasm. Sounds unlikely but that might relate to

electrolytes.

I'd suggest more talking with your granddaughter probably over an extended

period of

many conversations to try to figure out what it is and see if you can convince

her that she

shouldn't do it and see if she has voluntary control over it.

As far as ALA goes it is possible chelation is amplifying this, or perhaps has

nothing to do

with it. The only way to find out is try it. If you are particularly worried

about it, maybe

half the amount and a shorter time period (e. g. 3 hours day and night, or even

2.5 hours

day and night).

To promote normal neurological health you are not going to go wrong with lots of

omega

3 and vitamin E, say a tablespoon a day of flax oil (if you have a lot of irish

ancestry use

fish oil in half that amount as some irish people don't convert the flax oil

alpha linolenic

acid to active DHA and EPA) or fish oil if you prefer, and 1000+ IU of natural E

daily.

Speaking of the E, check what form she is getting and make sure it doesn't start

with dl-

blah blah blah, that's the synthetic stuff and it can make some people

" twitchy. "

Andy

>

> Andy and others,

>

> We got our eeg on Tuesday and today, Thursday met with the pediatric

neurologist. We

were able to reproduce the movement she has been doing while excited during the

eeg.

However, the eeg was entirely normal.

>

> We have the written interpretive report which states " The EEG contained 30-50

microvolt

8-10 cps activity in the occipital leads bilaterally, central, pariental and

frontal leads

contained similiar activity. There was a small amount of movement, eye movement

and

muscle artifact. "

>

> History of neurological status: When patient gets excited and is very tired,

she stiffens

arms and makes odd movements with her hands. She said her head felt " twitchy " .

This

started approximately 3 months ago but is more frequent now. No family history

of

seizures. She has a vasovagal response to pain. Normal gestation, breech

presentation and

delivery by C- section.

>

> Sleep was not recorded

> Hyperventilation caused no pathological change

> Photic stimulation caused no pathological change

> There were no focal or epileptiform abnormalities

>

> INTERPRETATION: Normal EEG

>

> The ped neuro said that he has never in his 25 years of practice seen or heard

of a child

who had seizures only while being excited. He also said the episodes we reported

did not

last long enough to be seizure related. He said if it was a tic it would be

repeated 100's of

time each day, which it is not. We had a videotape of the episode and he watched

it and

pronouned it a " mannerism " , like twirling your hair. I actually watched the

entire eeg and

when she did the movement I saw a slight dip in the eeg, asked the ped neuro

resident

about it and he pointed out that it looked like any other movement on the eeg,

like when

she yawned or scratched her arm, and he's right, it did.

>

> So that is the good news, I think. However, I have been watching this

movement, which

have changed and morphed over the last few weeks. We have done no further rounds

for

the last 4 weeks. At first we noticed the movement described above, stiff arms,

then it

changed into arm and hand flapping (which she NEVER, EVER did before) that is

gone

now, thank goodness, and now we have the arm stiffening with finger movement. I

can't

say it's gotten any worse.

>

> I'm beginning to wonder about a lot of things, but 2 specifically, the first

being; is this

some kind of redistribution? She did complain the very last round of one of

her hands

being numb on one side? I have to ask....Is it possible the Ala caused some

kind of

damage? Or is this really just a mannerism?

>

> Her cognition, language, thought processes and social interactions continue to

be

stellar, as they have been for the past year, but this clearly seems

neurological to me,

although the ped neuro says " no " . And how to proceed from here? I can say that

noone is

anxious to give her anymore Ala anytime soon feeling that the Ala is largely

responsible

although it's possible this " mannerism " would have appeared on it's own, apart

from the

Ala.

>

> I know it is not anyone's duty to talk us into further chelation or anything

else but I was

hoping for a dialogue about any odd reactions to Ala you have witnessed

previously that

might give us a clue as to what happened and where to go from here. I watched

her fall

asleep tonight thinking that we all want to do right by her, but what? Is there

any value/

point in just doing Dmsa rounds at this point?

>

> How do you proceed, if Ala suddenly becomes " off limits " ? We have chelated

for over

2.5 years and have done about 115 rounds, do we just stop and see what happens?

I have

always been a plan your work, work your plan person, but I'm stumped here. I

have

thought about this so much I think my head is going to pop off.

>

> Thanks for any ideas, thoughts,

>

August 4, 2007

----- Original Message -----

From: andrewhallcutler

The neuro sounds like he was actually helpful and knew what he was doing, a

real rarity!

===>Very experienced and knowledgeable, a real novelty.

It could be some seizure like think the eeg can't detect, in which case gaba

will suppress

it. Gaba also reduces excitement which might confuse you.

===>GABA made whatever this is worse, whatever that means.

It could be some sort of muscle spasm. Sounds unlikely but that might relate

to

electrolytes.

====>Would this show up on blood tests? Her's are clear, but her sodium was

elevated on her hair test, into the yellow, which never happened before. Mean

anything? Or can you do anything beside give plenty of cal/mag, which we are

doing?

I'd suggest more talking with your granddaughter probably over an extended

period of

many conversations to try to figure out what it is and see if you can convince

her that she

shouldn't do it and see if she has voluntary control over it.

===>She can control it, won't do it in front of anyone else but us. I'm not so

concerned with the fact that she is doing it but WHY she is doing it and WHY it

gets worse on a round. It is downright " tic looking " when she is on round.

I have little experience with this but it seems odd that a child who never

stimmed would start this late, 2.5 years into chelation, doesn't it?

What would get worse on round, a stim, a tic or a seizure, or C. all of the

above?

To promote normal neurological health you are not going to go wrong with lots

of omega

3 and vitamin E, say a tablespoon a day of flax oil (if you have a lot of

irish ancestry use

fish oil in half that amount as some irish people don't convert the flax oil

alpha linolenic

acid to active DHA and EPA) or fish oil if you prefer, and 1000+ IU of natural

E daily.

===>Thanks for this tip, dh is from Ireland.

Thanks,

August 4, 2007

Also, the ped wants to check her thyroid. We put her on low dose Lithium Orotate

due to her hair test showing no Lithium, just 3 mgs per day. After about 3

months her attention waned, her temps were down, and we had her thyroid checked,

it was low, TSH 2.3, Free T3 4.4. We upped the Armour to 1 grain and

discontinued the Lithium.

About 3 weeks later we added coconut oil in an attempt to try some alternative

yeast treatment. It did get rid of the yeast, but my dd noticed her temperature

was raised on it, up to 99 during the day. We stopped the coconut oil, and her

temps seem normal.

I'm wondering if this didn't push something higher than we liked and this has

something to do with these mannerisms, although I'm still left asking how they

can be worse on round.

Re: eeg results/future plans

The neuro sounds like he was actually helpful and knew what he was doing, a

real rarity!

I could come up with lots of explanations but I don't think any of them are a

lot more

probable than any others so you'll have to do some experimenting to figure out

what is

going on or at least what works.

It could be " stimming, " which is voluntary wierd behavior. The neuro might

call that a

mannerism. Vitamin A in adequate amounts often reduces or corrects this, as

sometimes

will zinc or magnesium or B6.

It could be some seizure like think the eeg can't detect, in which case gaba

will suppress

it. Gaba also reduces excitement which might confuse you.

It could be some sort of muscle spasm. Sounds unlikely but that might relate

to

electrolytes.

I'd suggest more talking with your granddaughter probably over an extended

period of

many conversations to try to figure out what it is and see if you can convince

her that she

shouldn't do it and see if she has voluntary control over it.

As far as ALA goes it is possible chelation is amplifying this, or perhaps has

nothing to do

with it. The only way to find out is try it. If you are particularly worried

about it, maybe

half the amount and a shorter time period (e. g. 3 hours day and night, or

even 2.5 hours

day and night).

To promote normal neurological health you are not going to go wrong with lots

of omega

3 and vitamin E, say a tablespoon a day of flax oil (if you have a lot of

irish ancestry use

fish oil in half that amount as some irish people don't convert the flax oil

alpha linolenic

acid to active DHA and EPA) or fish oil if you prefer, and 1000+ IU of natural

E daily.

Speaking of the E, check what form she is getting and make sure it doesn't

start with dl-

blah blah blah, that's the synthetic stuff and it can make some people

" twitchy. "

Andy

>

> Andy and others,

>

> We got our eeg on Tuesday and today, Thursday met with the pediatric

neurologist. We

were able to reproduce the movement she has been doing while excited during

the eeg.

However, the eeg was entirely normal.

>

> We have the written interpretive report which states " The EEG contained

30-50 microvolt

8-10 cps activity in the occipital leads bilaterally, central, pariental and

frontal leads

contained similiar activity. There was a small amount of movement, eye

movement and

muscle artifact. "

>

> History of neurological status: When patient gets excited and is very tired,

she stiffens

arms and makes odd movements with her hands. She said her head felt " twitchy " .

This

started approximately 3 months ago but is more frequent now. No family history

of

seizures. She has a vasovagal response to pain. Normal gestation, breech

presentation and

delivery by C- section.

>

> Sleep was not recorded

> Hyperventilation caused no pathological change

> Photic stimulation caused no pathological change

> There were no focal or epileptiform abnormalities

>

> INTERPRETATION: Normal EEG

>

> The ped neuro said that he has never in his 25 years of practice seen or

heard of a child

who had seizures only while being excited. He also said the episodes we

reported did not

last long enough to be seizure related. He said if it was a tic it would be

repeated 100's of

time each day, which it is not. We had a videotape of the episode and he

watched it and

pronouned it a " mannerism " , like twirling your hair. I actually watched the

entire eeg and

when she did the movement I saw a slight dip in the eeg, asked the ped neuro

resident

about it and he pointed out that it looked like any other movement on the eeg,

like when

she yawned or scratched her arm, and he's right, it did.

>

> So that is the good news, I think. However, I have been watching this

movement, which

have changed and morphed over the last few weeks. We have done no further

rounds for

the last 4 weeks. At first we noticed the movement described above, stiff

arms, then it

changed into arm and hand flapping (which she NEVER, EVER did before) that is

gone

now, thank goodness, and now we have the arm stiffening with finger movement.

I can't

say it's gotten any worse.

>

> I'm beginning to wonder about a lot of things, but 2 specifically, the first

being; is this

some kind of redistribution? She did complain the very last round of one of

her hands

being numb on one side? I have to ask....Is it possible the Ala caused some

kind of

damage? Or is this really just a mannerism?

>

> Her cognition, language, thought processes and social interactions continue

to be

stellar, as they have been for the past year, but this clearly seems

neurological to me,

although the ped neuro says " no " . And how to proceed from here? I can say that

noone is

anxious to give her anymore Ala anytime soon feeling that the Ala is largely

responsible

although it's possible this " mannerism " would have appeared on it's own, apart

from the

Ala.

>

> I know it is not anyone's duty to talk us into further chelation or anything

else but I was

hoping for a dialogue about any odd reactions to Ala you have witnessed

previously that

might give us a clue as to what happened and where to go from here. I watched

her fall

asleep tonight thinking that we all want to do right by her, but what? Is

there any value/

point in just doing Dmsa rounds at this point?

>

> How do you proceed, if Ala suddenly becomes " off limits " ? We have chelated

for over

2.5 years and have done about 115 rounds, do we just stop and see what

happens? I have

always been a plan your work, work your plan person, but I'm stumped here. I

have

thought about this so much I think my head is going to pop off.

>

> Thanks for any ideas, thoughts,

>

August 4, 2007

Also, the ped wants to check her thyroid. We put her on low dose Lithium Orotate

due to her hair test showing no Lithium, just 3 mgs per day. After about 3

months her attention waned, her temps were down, and we had her thyroid checked,

it was low, TSH 2.3, Free T3 4.4. We upped the Armour to 1 grain and

discontinued the Lithium.

About 3 weeks later we added coconut oil in an attempt to try some alternative

yeast treatment. It did get rid of the yeast, but my dd noticed her temperature

was raised on it, up to 99 during the day. We stopped the coconut oil, and her

temps seem normal.

I'm wondering if this didn't push something higher than we liked and this has

something to do with these mannerisms, although I'm still left asking how they

can be worse on round.

Re: eeg results/future plans

The neuro sounds like he was actually helpful and knew what he was doing, a

real rarity!

I could come up with lots of explanations but I don't think any of them are a

lot more

probable than any others so you'll have to do some experimenting to figure out

what is

going on or at least what works.

It could be " stimming, " which is voluntary wierd behavior. The neuro might

call that a

mannerism. Vitamin A in adequate amounts often reduces or corrects this, as

sometimes

will zinc or magnesium or B6.

It could be some seizure like think the eeg can't detect, in which case gaba

will suppress

it. Gaba also reduces excitement which might confuse you.

It could be some sort of muscle spasm. Sounds unlikely but that might relate

to

electrolytes.

I'd suggest more talking with your granddaughter probably over an extended

period of

many conversations to try to figure out what it is and see if you can convince

her that she

shouldn't do it and see if she has voluntary control over it.

As far as ALA goes it is possible chelation is amplifying this, or perhaps has

nothing to do

with it. The only way to find out is try it. If you are particularly worried

about it, maybe

half the amount and a shorter time period (e. g. 3 hours day and night, or

even 2.5 hours

day and night).

To promote normal neurological health you are not going to go wrong with lots

of omega

3 and vitamin E, say a tablespoon a day of flax oil (if you have a lot of

irish ancestry use

fish oil in half that amount as some irish people don't convert the flax oil

alpha linolenic

acid to active DHA and EPA) or fish oil if you prefer, and 1000+ IU of natural

E daily.

Speaking of the E, check what form she is getting and make sure it doesn't

start with dl-

blah blah blah, that's the synthetic stuff and it can make some people

" twitchy. "

Andy

>

> Andy and others,

>

> We got our eeg on Tuesday and today, Thursday met with the pediatric

neurologist. We

were able to reproduce the movement she has been doing while excited during

the eeg.

However, the eeg was entirely normal.

>

> We have the written interpretive report which states " The EEG contained

30-50 microvolt

8-10 cps activity in the occipital leads bilaterally, central, pariental and

frontal leads

contained similiar activity. There was a small amount of movement, eye

movement and

muscle artifact. "

>

> History of neurological status: When patient gets excited and is very tired,

she stiffens

arms and makes odd movements with her hands. She said her head felt " twitchy " .

This

started approximately 3 months ago but is more frequent now. No family history

of

seizures. She has a vasovagal response to pain. Normal gestation, breech

presentation and

delivery by C- section.

>

> Sleep was not recorded

> Hyperventilation caused no pathological change

> Photic stimulation caused no pathological change

> There were no focal or epileptiform abnormalities

>

> INTERPRETATION: Normal EEG

>

> The ped neuro said that he has never in his 25 years of practice seen or

heard of a child

who had seizures only while being excited. He also said the episodes we

reported did not

last long enough to be seizure related. He said if it was a tic it would be

repeated 100's of

time each day, which it is not. We had a videotape of the episode and he

watched it and

pronouned it a " mannerism " , like twirling your hair. I actually watched the

entire eeg and

when she did the movement I saw a slight dip in the eeg, asked the ped neuro

resident

about it and he pointed out that it looked like any other movement on the eeg,

like when

she yawned or scratched her arm, and he's right, it did.

>

> So that is the good news, I think. However, I have been watching this

movement, which

have changed and morphed over the last few weeks. We have done no further

rounds for

the last 4 weeks. At first we noticed the movement described above, stiff

arms, then it

changed into arm and hand flapping (which she NEVER, EVER did before) that is

gone

now, thank goodness, and now we have the arm stiffening with finger movement.

I can't

say it's gotten any worse.

>

> I'm beginning to wonder about a lot of things, but 2 specifically, the first

being; is this

some kind of redistribution? She did complain the very last round of one of

her hands

being numb on one side? I have to ask....Is it possible the Ala caused some

kind of

damage? Or is this really just a mannerism?

>

> Her cognition, language, thought processes and social interactions continue

to be

stellar, as they have been for the past year, but this clearly seems

neurological to me,

although the ped neuro says " no " . And how to proceed from here? I can say that

noone is

anxious to give her anymore Ala anytime soon feeling that the Ala is largely

responsible

although it's possible this " mannerism " would have appeared on it's own, apart

from the

Ala.

>

> I know it is not anyone's duty to talk us into further chelation or anything

else but I was

hoping for a dialogue about any odd reactions to Ala you have witnessed

previously that

might give us a clue as to what happened and where to go from here. I watched

her fall

asleep tonight thinking that we all want to do right by her, but what? Is

there any value/

point in just doing Dmsa rounds at this point?

>

> How do you proceed, if Ala suddenly becomes " off limits " ? We have chelated

for over

2.5 years and have done about 115 rounds, do we just stop and see what

happens? I have

always been a plan your work, work your plan person, but I'm stumped here. I

have

thought about this so much I think my head is going to pop off.

>

> Thanks for any ideas, thoughts,

>

August 4, 2007

Also, the ped wants to check her thyroid. We put her on low dose Lithium Orotate

due to her hair test showing no Lithium, just 3 mgs per day. After about 3

months her attention waned, her temps were down, and we had her thyroid checked,

it was low, TSH 2.3, Free T3 4.4. We upped the Armour to 1 grain and

discontinued the Lithium.

About 3 weeks later we added coconut oil in an attempt to try some alternative

yeast treatment. It did get rid of the yeast, but my dd noticed her temperature

was raised on it, up to 99 during the day. We stopped the coconut oil, and her

temps seem normal.

I'm wondering if this didn't push something higher than we liked and this has

something to do with these mannerisms, although I'm still left asking how they

can be worse on round.

Re: eeg results/future plans

The neuro sounds like he was actually helpful and knew what he was doing, a

real rarity!

I could come up with lots of explanations but I don't think any of them are a

lot more

probable than any others so you'll have to do some experimenting to figure out

what is

going on or at least what works.

It could be " stimming, " which is voluntary wierd behavior. The neuro might

call that a

mannerism. Vitamin A in adequate amounts often reduces or corrects this, as

sometimes

will zinc or magnesium or B6.

It could be some seizure like think the eeg can't detect, in which case gaba

will suppress

it. Gaba also reduces excitement which might confuse you.

It could be some sort of muscle spasm. Sounds unlikely but that might relate

to

electrolytes.

I'd suggest more talking with your granddaughter probably over an extended

period of

many conversations to try to figure out what it is and see if you can convince

her that she

shouldn't do it and see if she has voluntary control over it.

As far as ALA goes it is possible chelation is amplifying this, or perhaps has

nothing to do

with it. The only way to find out is try it. If you are particularly worried

about it, maybe

half the amount and a shorter time period (e. g. 3 hours day and night, or

even 2.5 hours

day and night).

To promote normal neurological health you are not going to go wrong with lots

of omega

3 and vitamin E, say a tablespoon a day of flax oil (if you have a lot of

irish ancestry use

fish oil in half that amount as some irish people don't convert the flax oil

alpha linolenic

acid to active DHA and EPA) or fish oil if you prefer, and 1000+ IU of natural

E daily.

Speaking of the E, check what form she is getting and make sure it doesn't

start with dl-

blah blah blah, that's the synthetic stuff and it can make some people

" twitchy. "

Andy

>

> Andy and others,

>

> We got our eeg on Tuesday and today, Thursday met with the pediatric

neurologist. We

were able to reproduce the movement she has been doing while excited during

the eeg.

However, the eeg was entirely normal.

>

> We have the written interpretive report which states " The EEG contained

30-50 microvolt

8-10 cps activity in the occipital leads bilaterally, central, pariental and

frontal leads

contained similiar activity. There was a small amount of movement, eye

movement and

muscle artifact. "

>

> History of neurological status: When patient gets excited and is very tired,

she stiffens

arms and makes odd movements with her hands. She said her head felt " twitchy " .

This

started approximately 3 months ago but is more frequent now. No family history

of

seizures. She has a vasovagal response to pain. Normal gestation, breech

presentation and

delivery by C- section.

>

> Sleep was not recorded

> Hyperventilation caused no pathological change

> Photic stimulation caused no pathological change

> There were no focal or epileptiform abnormalities

>

> INTERPRETATION: Normal EEG

>

> The ped neuro said that he has never in his 25 years of practice seen or

heard of a child

who had seizures only while being excited. He also said the episodes we

reported did not

last long enough to be seizure related. He said if it was a tic it would be

repeated 100's of

time each day, which it is not. We had a videotape of the episode and he

watched it and

pronouned it a " mannerism " , like twirling your hair. I actually watched the

entire eeg and

when she did the movement I saw a slight dip in the eeg, asked the ped neuro

resident

about it and he pointed out that it looked like any other movement on the eeg,

like when

she yawned or scratched her arm, and he's right, it did.

>

> So that is the good news, I think. However, I have been watching this

movement, which

have changed and morphed over the last few weeks. We have done no further

rounds for

the last 4 weeks. At first we noticed the movement described above, stiff

arms, then it

changed into arm and hand flapping (which she NEVER, EVER did before) that is

gone

now, thank goodness, and now we have the arm stiffening with finger movement.

I can't

say it's gotten any worse.

>

> I'm beginning to wonder about a lot of things, but 2 specifically, the first

being; is this

some kind of redistribution? She did complain the very last round of one of

her hands

being numb on one side? I have to ask....Is it possible the Ala caused some

kind of

damage? Or is this really just a mannerism?

>

> Her cognition, language, thought processes and social interactions continue

to be

stellar, as they have been for the past year, but this clearly seems

neurological to me,

although the ped neuro says " no " . And how to proceed from here? I can say that

noone is

anxious to give her anymore Ala anytime soon feeling that the Ala is largely

responsible

although it's possible this " mannerism " would have appeared on it's own, apart

from the

Ala.

>

> I know it is not anyone's duty to talk us into further chelation or anything

else but I was

hoping for a dialogue about any odd reactions to Ala you have witnessed

previously that

might give us a clue as to what happened and where to go from here. I watched

her fall

asleep tonight thinking that we all want to do right by her, but what? Is

there any value/

point in just doing Dmsa rounds at this point?

>

> How do you proceed, if Ala suddenly becomes " off limits " ? We have chelated

for over

2.5 years and have done about 115 rounds, do we just stop and see what

happens? I have

always been a plan your work, work your plan person, but I'm stumped here. I

have

thought about this so much I think my head is going to pop off.

>

> Thanks for any ideas, thoughts,

>

August 4, 2007

> ===>GABA made whatever this is worse, whatever that means.

Did you use plain GABA, or the one with inositol and niacinamide?

--

August 4, 2007

----- Original Message -----

From:

> ===>GABA made whatever this is worse, whatever that means.

Did you use plain GABA, or the one with inositol and niacinamide?

--

====>Hi ,

It was the one with niacinamide and glycine, she has had GABA and niacinamide

and glycine before all of which she tolerated well, but this was some time ago,

things could have changed. What are your thoughts about this?

Also, I just posted a second post to Andy about when this all started. I'm

wondering if the coconut oil didn't push her thyroid too high or if chelation

somehow fixed it somewhat and we are now giving too much Armour, making her

hyper. What are your thoughts about this?

I do know that if it gets really, really high it can cause odd movements and

even seizures. I read something about " thyroid storms " where the thyroid starts

racing and then you get all these odd symptoms. I know she is not in a thyroid

storm but am wondering if it didn't get pushed too high somehow and that is

maybe what we are seeing.

But as I told Andy, I'm not sure how this answers the ? about these

mannerisms/tics/stims being worse while on round.

August 4, 2007

----- Original Message -----

From:

> ===>GABA made whatever this is worse, whatever that means.

Did you use plain GABA, or the one with inositol and niacinamide?

--

====>Hi ,

It was the one with niacinamide and glycine, she has had GABA and niacinamide

and glycine before all of which she tolerated well, but this was some time ago,

things could have changed. What are your thoughts about this?

Also, I just posted a second post to Andy about when this all started. I'm

wondering if the coconut oil didn't push her thyroid too high or if chelation

somehow fixed it somewhat and we are now giving too much Armour, making her

hyper. What are your thoughts about this?

I do know that if it gets really, really high it can cause odd movements and

even seizures. I read something about " thyroid storms " where the thyroid starts

racing and then you get all these odd symptoms. I know she is not in a thyroid

storm but am wondering if it didn't get pushed too high somehow and that is

maybe what we are seeing.

But as I told Andy, I'm not sure how this answers the ? about these

mannerisms/tics/stims being worse while on round.

August 4, 2007

----- Original Message -----

From:

> ===>GABA made whatever this is worse, whatever that means.

Did you use plain GABA, or the one with inositol and niacinamide?

--

====>Hi ,

It was the one with niacinamide and glycine, she has had GABA and niacinamide

and glycine before all of which she tolerated well, but this was some time ago,

things could have changed. What are your thoughts about this?

Also, I just posted a second post to Andy about when this all started. I'm

wondering if the coconut oil didn't push her thyroid too high or if chelation

somehow fixed it somewhat and we are now giving too much Armour, making her

hyper. What are your thoughts about this?

I do know that if it gets really, really high it can cause odd movements and

even seizures. I read something about " thyroid storms " where the thyroid starts

racing and then you get all these odd symptoms. I know she is not in a thyroid

storm but am wondering if it didn't get pushed too high somehow and that is

maybe what we are seeing.

But as I told Andy, I'm not sure how this answers the ? about these

mannerisms/tics/stims being worse while on round.

August 4, 2007

> ===>GABA made whatever this is worse, whatever that means.

Most likely that her liver turns it into glutamate, as in MSG, before it gets

into her system.

> It could be some sort of muscle spasm. Sounds unlikely but that might relate

to

> electrolytes.

>

> ====>Would this show up on blood tests?

Not necessariliy.

>Her's are clear, but her sodium was elevated on her hair test, into the yellow,

Yellow range doesn't mean anything.

> which never happened before. Mean anything? Or can you do anything beside

give

plenty of cal/mag, which we are doing?

Cal, mag, salt, potassium by giving vegetables or lite salt, or give her some

pedialyte daily.

> I'd suggest more talking with your granddaughter probably over an extended

period of

> many conversations to try to figure out what it is and see if you can

convince her that

she

> shouldn't do it and see if she has voluntary control over it.

>

> ===>She can control it, won't do it in front of anyone else but us. I'm not

so

concerned with the fact that she is doing it but WHY she is doing it and WHY it

gets worse

on a round. It is downright " tic looking " when she is on round.

>

> I have little experience with this but it seems odd that a child who never

stimmed

would start this late, 2.5 years into chelation, doesn't it?

Seems odd. Might be any number of things.

> What would get worse on round, a stim, a tic or a seizure, or C. all of the

above?

All of the above, or whatever else is bothersome.

Andy

August 4, 2007

> Also, the ped wants to check her thyroid. We put her on low dose Lithium

Orotate due to

her hair test showing no Lithium, just 3 mgs per day. After about 3 months her

attention

waned, her temps were down, and we had her thyroid checked, it was low, TSH 2.3,

Free

T3 4.4. We upped the Armour to 1 grain and discontinued the Lithium.

>

> About 3 weeks later we added coconut oil in an attempt to try some alternative

yeast

treatment. It did get rid of the yeast, but my dd noticed her temperature was

raised on it,

up to 99 during the day. We stopped the coconut oil, and her temps seem normal.

>

> I'm wondering if this didn't push something higher than we liked and this has

something to do with these mannerisms, although I'm still left asking how they

can be

worse on round.

Hypothyyroidism (doctorspeak for low thyroid) can cause seizures and EEG

abnormalities, I

have not heard of hyperthyroidism causing this.

The amount of lithium in a nutritional supplement is not significant compared to

the

amount needed to affect thyroid function. Most doctors are innumerate so they

are

incapable of comparing dosages, I have run across this kind of thing a lot.

If the pede will order PROPER testing, which includes both free T3 and free T4

(NOT 'free

thyroxine index' or anything similarly named, you want a direct laboratory

determination,

not a calculated value) then it may well be worth doing.

If your dd is getting overly compulsive and twitchy at small changes within the

bounds of

reason, such as temperatore of 99 vs 98.6, then you will have almost no hope of

really

improving your granddaughter's situation until your daughter gets adequate care

to calm

down and use good judgment. Temperature varies throughout the day and somewhat

with seasons, too.

Being worse on round does suggest they are metal related.

Basically I think you can not resolve this situation without more information,

which can

only be gotten by testing and trying things.

I also don't want to sound like I am blowing this off, but since she has

voluntary control it

doesn't sound profoundly disturbing.

I do strongly suggest putting a lot of effort into talking with dgd many times

about it to try

to understand it, recalling that children are very poor at having the

perspective necessary

to express how they feel and what is happening so you have to do most of the

work.

Also, the easier thing to do is ask her what she thinks would help with it. She

may well

know.

Andy

August 4, 2007

>

> > ===>GABA made whatever this is worse, whatever that means.

>

> Did you use plain GABA, or the one with inositol and niacinamide?

>

> --

>

> ====>Hi ,

>

> It was the one with niacinamide and glycine, she has had GABA and

niacinamide and glycine before all of which she tolerated well, but

this was some time ago, things could have changed. What are your

thoughts about this?

Well, the main point is the GABA isn't helping. Why is probably

not important.

> Also, I just posted a second post to Andy about when this all

started. I'm wondering if the coconut oil didn't push her thyroid too

high or if chelation somehow fixed it somewhat and we are now giving

too much Armour, making her hyper. What are your thoughts about this?

I think blood tests would be the most reliable way to see how the

thyroid is doing. If you are worried about hyperthyroid, I would

pay attention to heart rate (at rest or asleep). I am cycling

doses of T3 and I have found heart rate is very informative as to

when the T3 is stressing my body.

> I do know that if it gets really, really high it can cause odd

movements and even seizures. I read something about " thyroid storms "

where the thyroid starts racing and then you get all these odd

symptoms. I know she is not in a thyroid storm but am wondering if it

didn't get pushed too high somehow and that is maybe what we are seeing.

My instinct says it is more generally mercury-related and not

thyroid.

> But as I told Andy, I'm not sure how this answers the ? about

these mannerisms/tics/stims being worse while on round.

This sounds to me like too high a dose or too long an interval.

I have a strong feeling it is an interval thing. I could be way

off, but if you do another round at some point, I would try

a pretty short interval (and a pretty low dose).

I like Andy's suggestion to ask her if she knows what would help.

--

>

August 4, 2007