Re: Help and advice

[Guest guest]

Kenny,

It is normal to see improvements for about two months, then see a stalling, or

even drop off in some behaviors for a while then an improvement again. Andy uses

the term " fits and starts " for the back and forth

improvement/stalling/regression that can occur.

Magnesium and C are important supplements to give 3-4 times a day with the

chelators. Otherwise ours gets cranky and we get the " its the end of the world "

tears over some not-so-major events. And she takes it to the max, theatrically

covering her face as if she can tolerate no more. Would be pretty funny if you

could overlook how distraught she is. With the mag and C, no problems.

Each round is different. In some we see some type of improvement from day one,

some not until the last day of the round. Sometimes you have to play around with

the supplements. I find pantethine is important this time of year, along with

the C, as this is allergy season in our part of the world.

1/2 mg per lb is the upper limit. I would try lowering the dose, a little to see

if he better tolerates it. Sorry not to be more help, but I think if you are

getting improvement in some areas, this is what is to be expected.

Good luck,

[ ] Help and advice

To recap

Before going back to chelation with DSMA we had revamped many of my

child's supplements ridding the ones he no longer needed and

adjusting the ones he responded well with.

Right now he is currently taken probiotics, folinic acid 3x's daily.

Also Super multi vitamin 2 x's daily. Also Mb12 every 3 days.

My son responded well and begun chelation off to a good start. We

followed Andy's dose protocol based on my sons 40 pd body weight,

We seen good results for3 rounds but then after following closer to

Andy's work and questioning more of the areas of side effects,

redistribution and reading many of Andy's responses, I happen to

question this more for myself. So I heeded his advice and warnings

and decided to do 3-4hour dosing.

Again great results, no regressions.

However we did see some emotional things start to change such as

crying, but these to me are normal emotions that were not previously

exhibited before, so I can only say that they are good progressions.

Would anyone confirm this also?

Now I must mention that along with these exposed emotions we had also

gained more area of spontaneous conversation, and imaginative play.

Again would you say that this as well is good stuff all around

considering some of the emotional outbreaks?

Now going on to the intro to adding ALA round 4 - 6 seemed to produce

pretty much all-good results as well. I started my son with about 3/8

mg per body weight and stayed with the 1/2 mg per body weight DSMA

dose (firmly on a 4 hour dosing schedule)

We had an average or above average round 4-5. Then we had an awesome

round 6 in many areas and a real good rest period that followed.

Then the next round 7 was not so hot, especially compared to such an

awesome round six.

He seemed not to be as ON during the cycle and more OFF in the rest

period.

He started doing some compulsive behavior but not severe, such as the

light switch stuff and more scripting.

My question is what may cause those returned behaviors and emotional

changes? .

Because with each round he was progressing better until this one.

Again more irritable, pretty compliant but more outbursts no as much

of bad behavior but only the emotional stuff.

I need to mention after speaking with my wife that after the last

round my son had two incidence that he removed his clothing and

urinated out side and also did this once inside.

My son has been potty trained for 2 years now with no accidents in a

very long time. And these types of behavior have not been seen in

well over 2 years now.

What should we look for as far as what might be the wrong the dosing

of ALA DSMA or overall protocol?

Or what else should we be doing as far as supporting sups. Right now

his on a balanced vitamin and supplement schedule and is maintaining

a good probiotics, no issues there; good stools no suspected gut, or

yeast issues, nor fenols or the like.

I would like to get rid of his current multi vitamin and revamp this

as well giving what ever is suggested with proper vitamin dose and

minerals that are needed to go along with chelation process.

What might be causing these types of behaviors?

He has been gaining ground with each round of chelation until

recently we have observed regression.

I would still like to mention. Again that along with these exposed

emotions we had also gained more area of spontaneous conversation,

and imaginative play.

Any help and comments would be appreciated

Thanks all once again

Kenny v

Father to .

=======================================================

[Guest guest]

It was interesting reading Kenny's and 's posts because I am

seeing much the same things with my son too. We have just finished

round 9 of chelation using DMSA and ALA. (Started with 3 rounds of

DMSA only, then added ALA from round 4 onwards).

The off days this week have not been as good(- very oral, more tears

when he doesn't get what he wants right away), while he has been doing

well on off days for the previous weeks. I suppose it has to do with

being at the 2 month mark and that we're experiencing the

improvement/stalling/regression that occurs. I agree that each week

after chelation is different. He does really well some weeks, other

weeks he has more days where he is irritable, impatient and oral. I

think yeast flare up contributes to this up and down as well.

We have also started getting the " it's the end of the world " tears. We

see more assertiveness and jealousy too when his younger brother

appears to be getting more attention. I think my son is becoming more

aware of himself and is pushing limits. From the developmental point

of view, I think this is a good thing.

Fiona

> It is normal to see improvements for about two months, then see a

stalling, or even drop off in some behaviors for a while then an

improvement again. Andy uses the term " fits and starts " for the back

and forth improvement/stalling/regression that can occur.

> [ ] Help and advice

> However we did see some emotional things start to change such as

> crying, but these to me are normal emotions that were not previously

> exhibited before, so I can only say that they are good progressions.

>

> Would anyone confirm this also?

[Guest guest]

Some have ffound that when they add ALA they need to reduce the doses. Others

have found it helpful to do just DMSA for the final dose in order to " mop up "

the mercury that's roaming around in the body without releasingmore from the

brain.

S S

<tt>

It was interesting reading Kenny's and 's posts because I am<BR>

seeing much the same things with my son too. We have just finished<BR>

round 9 of chelation using DMSA and ALA. (Started with 3 rounds of<BR>

DMSA only, then added ALA from round 4 onwards).<BR>

<BR>

The off days this week have not been as good(- very oral, more tears<BR>

when he doesn't get what he wants right away), while he has been doing<BR>

well on off days for the previous weeks. I suppose it has to do with<BR>

being at the 2 month mark and that we're experiencing the<BR>

improvement/stalling/regression that occurs. I agree that each week<BR>

after chelation is different. He does really well some weeks, other<BR>

weeks he has more days where he is irritable, impatient and oral. I<BR>

think yeast flare up contributes to this up and down as well.<BR>

<BR>

We have also started getting the " it's the end of the world " tears. We<BR>

see more assertiveness and jealousy too when his younger brother<BR>

appears to be getting more attention. I think my son is becoming more<BR>

aware of himself and is pushing limits. From the developmental point<BR>

of view, I think this is a good thing.<BR>

<BR>

Fiona<BR>

<BR>

<BR>

<BR>

<BR>

> It is normal to see improvements for about two months, then see a<BR>

stalling, or even drop off in some behaviors for a while then an<BR>

improvement again. Andy uses the term " fits and starts " for the back<BR>

and forth improvement/stalling/regression that can occur.<BR>

<BR>

<BR>

>   [ ] Help and advice<BR>

<BR>

>   However we did see some emotional things start to change such as <BR>

>   crying, but these to me are normal emotions that were not previously <BR>

>   exhibited before, so I can only say that they are good progressions.<BR>

> <BR>

>   Would anyone confirm this also?<BR>

<BR>

<BR>

<BR>

</tt>

<br><br>

<tt>

=======================================================<BR>

[Guest guest]

,

Do you mean after using DMSA that some used ALA alone as their chelator for

'x' amount of rounds and then the last few rounds used DMSA only?

Thanks for clarifying!

Jackie--

> Some have ffound that when they add ALA they need to reduce the doses.

> Others have found it helpful to do just DMSA for the final dose in order

> to " mop up " the mercury that's roaming around in the body without

> releasingmore from the brain.

> S S

[Guest guest]

Thank you for all your comments is gives way to except some of the

improvement/stalling/regression reasoning. Many of the marked

positives changes that involve emotions are a definite plus overall.

But I hope as Andy might say we could toss this around awhile to gain

more understanding what is happening. It might be clearer as to what

are definitive answers.

I am sorry for questioning this more and ask for your patience and

understanding as to why and what is happening here that I might be

able to adjust his protocol to effectively chelate, while reducing

the side effects.

All the comments seem to be logical, but it is not clear as to what

is actually happing. One thing that I can confirm is it is from the

chelation process. Since adjusting all my sons supplements etc. we

have tracked all of my sons important responses. Such as hyper

activity, stimulation, scripting eye contact, compliance, spontaneous

response .We take data every day and I can definitely rule any diet,

yeast issues, and also environmental that might effect these behavior

changes.

Please help me sort more of this out because it is still not clear.

Not to be funny but I don't want this to be poke and hope

especially

if it is mercury I am dealing with. Let me try to explain where I am

coming from.

So I can be directed from my lack of understanding here. A year 1-1/2

ago my son was put on an aggressive protocol 100mg DSMA every 8 hours

4 days on 3 days off. ALA was added after 4 rounds.

I am NOT saying this is right, nor do I prescribe to this way of

thinking anymore.

We did have many gains too much to list from where he was, however we

also had meltdowns and off days, but over all this got better the

longer we continued. And ON days were always better than OFF.

Now after revisiting the fact my son was not finished chelation I

came back on board with Andy's protocol, which makes way too much

sense. Because of my past exposure to an improper protocol Andy had

helped me clear up many of the answers as to overdosing with a

chelator and the important to more frequent dosing.

As I understand it from Andy, more of a chelating agent is not the

answer you don't need much to get in there and mobilize the

mercury.

However in my posts to ask about overdosing a chelator he did say

that any chelator that is not used in the body is excreted out of the

body. But he also made it clear that it is BAD not to use high dose

protocols and side effects are less with more frequency and adequate

support with proper rest periods.

He did comment on dose ratios between 2:1 or 1:2 Ala- Dsma is to be

preferred but not which one does better than the other.

Any comments?

As in most cases here everyone is advised to reduce the amount of

Chelator and increase the frequency.

Can I please ask…….

At a small dose protocol, than what explains in theory of the

mobilized metals not being chelated?

Either way is redistribution still unavoidable?

Is this a redistribution issue that requires more of a chelator?

Does the dose ratio need to be adjusted between the ALA and the DSMA?

I m currently using 2:1 Dsma – ALA and Have reduced the ratio to

½

mg and ¼ ALA per pound, per body weight.

Perhaps something else I am missing or misunderstanding?

Please don't hesitate to share your good to bad, bad to good, bad

to

better experience with adjusting the amount of chelator. Any comments

would be appreciated to help understand and sort this out some

definitive answers.

There must be some constants here, please help me discover them.

Perhaps Andy can confirm after some of your responses.

Thank you all once again

Kenny v

Father to

[Guest guest]

> Please don't hesitate to share your good to bad, bad to good, bad

> to

> better experience with adjusting the amount of chelator. Any comments

> would be appreciated to help understand and sort this out some

> definitive answers.

One and a half years ago I also started chelating my son (3 years old,

about 40 lb at that time) using ALA only. We did 16 rounds following

Andy's protocol. We started at 1/8mg per lb of body weight and over a

few rounds moved up the dose and eventually settled at 1/2mg per lb of

body weight.

During this 16 rounds, my son was generally better on the On days, and

very irritable on the Off days. Eventhough he made some gains during

that time, his irritable/fussy/frequent melt down behavior affected

his interactions at school and his learning. We eventually stopped

chelating after 16 rounds because we were tired of putting up with his

negative behaviors and focused on other interventions.

I decided to revisit chelation this March because I've come to realize

that he hadn't made all that much gains in the past 1 1/2 years, and

that I really needed to deal with the mercury issue. So in March I

chelated him with ALA only again, at 1/8 mg per lb of body weight, and

again we saw all the negative behaviors which reminded me why I

stopped chelating in the first place. His regression was so obvious

his school teacher was very alarmed by it.

As my son is non-verbal he was unable to tell us exactly how he felt

while on ALA. After reading postings from adults who are chelating/

have chelated themselves, I have come to realize that he must have had

acid stomach from ALA which made him very irritable because he would

want to eat very frequently, even at 3am, and would calm down somewhat

after eating.

We didn't give up though, and decided to try DMSA only. He did very

well for the first 3 rounds of DMSA (1/5mg per lb of body weight) -

everyone at school commented that he was more with-it and seemed to

have a sudden developmental growth spurt. With that confidence, we

added ALA to round 4, and amazingly we saw non of the negative effects

we saw when we did ALA alone.

From rounds 4 to the latest round 9 of DMSA + ALA, we have tweaked his

dosing up and down. We find that my son is most comfortable with DMSA

at 1/4mg, while with ALA at 1/8mg. If we increase his ALA dose any

higher, we'd see the irritable/negative behaviors right away. Since he

is comfortable at this dosing level, I plan to stick to it for a while.

That's our experience so far.

Fiona

[Guest guest]

, my daughter becomes totally evil when we dont take care of her

allergies...she will be so mean to me and her siblings for absolutely no reason,

defiant and disrespectful. She could be diagnosed with ODD (Oppositional

Defiant Disorder) when she feels this way. Antihistamines did not work for her,

we had to do P/N treatment also called MTID. The change in her is literally

within minutes. I need to get video of this so people see! This immunotherapy

has changed our lives.

Mrs. on told me something that also made sense, that when our children

are acting out its for control, that they feel very anxious. It has helped me

not take things so personal and just hold her when she is afraid, too. Many

times she will just break down crying in my arms.

Hope this helps,

>

> If some of you are giving ibuprofen for inflammation, could you please let

> me know: what dose you gave, how long is too long, what markers did you look

> for to see if inflammation was gone. My son's main problem is his

> hyperactivity and mean-spirited behaviours. He will hurt, steal, etc. and it

> kills me. It is heartbreaking to see. He has had tests for viruses (HHV1-8)

> and nothing showed up. He has immune problems (low eosinophils, high

> neutrophils, high blood platelet count). I have been doing Dr. G's diet and

> keeping everything very stable. He is also getting Enzyme Potentiated

> Desensitization therapy for allergies. I am begging someone to help me.

> Please. He just had his blood tests done for ANA, ferritin, CBC and diff.

>

>

>

>

[Guest guest]

Hi ,

Please try the Zyto consult with Payne, startlivingwelltoday,,it was

a crystal ball

for us and uncovered so much we hadnt known about our sons health

could PANDAS be an issue,it was for us,it can make kids feel so

angry,zithromax worked very well for us

]

>

--

Cotter

5 Pollerton Manor

Carlow

059 9134964

087 2637921

[Guest guest]

Can PANDAS be permanently " cured " ? My friend's son has it, she knows he has

it, she doesn't seek treatment for it, he is a wreck. On lithium and other

meds for bipolar. Yikes! I feel like if I can let her know there is a cure

she might pursue it.

Kristy Nardini

Tazzini Stainless Steel Bottles

www.tazzini.com

kristy@...

Phone: 858.243.1929

Fax: 858.724.1418

Re: Help and advice

Hi ,

Please try the Zyto consult with Payne, startlivingwelltoday,,it was

a crystal ball

for us and uncovered so much we hadnt known about our sons health

could PANDAS be an issue,it was for us,it can make kids feel so

angry,zithromax worked very well for us

]

>

--

Cotter

5 Pollerton Manor

Carlow

059 9134964

087 2637921

[Guest guest]

Huh? Let me get this straight - she knows he has it, but doesn't want to take

steps to cure it?

Okay well I have heard that it CAN resurface after a while, and then the same

treatment(antibiotics, right?) is repeated. But there could possibly be many

months or years between resurfacing, and I believe one cause of a repeat is

getting a strep infection again (although maybe there are other reasons, such as

the bacteria never completely leaving the body?...That I don't know.)

 

There HAS to be a reason why she doesn't want to treat him...Cost? Fear of some

reaction? Is he allergic to most antibiotics? Fear that it may make things

worse?  Do you know what her reason is?

 

Bridget

From: Kristy Nardini <knardini@...>

Subject: RE: Help and advice

Date: Wednesday, April 7, 2010, 2:23 PM

 

Can PANDAS be permanently " cured " ? My friend's son has it, she knows he has

it, she doesn't seek treatment for it, he is a wreck. On lithium and other

meds for bipolar. Yikes! I feel like if I can let her know there is a cure

she might pursue it.

Kristy Nardini

Tazzini Stainless Steel Bottles

www.tazzini. com

kristytazzini (DOT) com

Phone: 858.243.1929

Fax: 858.724.1418

Re: Help and advice

Hi ,

Please try the Zyto consult with Payne, startlivingwelltoda y,,it was

a crystal ball

for us and uncovered so much we hadnt known about our sons health

could PANDAS be an issue,it was for us,it can make kids feel so

angry,zithromax worked very well for us

]

>

--

Cotter

5 Pollerton Manor

Carlow

059 9134964

087 2637921

[Guest guest]

What does PANDAS means??

--- El mié, 4/7/10, Kristy Nardini <knardini@...> escribió:

De: Kristy Nardini <knardini@...>

Asunto: RE: Help and advice

A:

Fecha: miércoles, 7 de abril de 2010, 11:23 am

 

Can PANDAS be permanently " cured " ? My friend's son has it, she knows he has

it, she doesn't seek treatment for it, he is a wreck. On lithium and other

meds for bipolar. Yikes! I feel like if I can let her know there is a cure

she might pursue it.

Kristy Nardini

Tazzini Stainless Steel Bottles

www.tazzini. com

kristytazzini (DOT) com

Phone: 858.243.1929

Fax: 858.724.1418

Re: Help and advice

Hi ,

Please try the Zyto consult with Payne, startlivingwelltoda y,,it was

a crystal ball

for us and uncovered so much we hadnt known about our sons health

could PANDAS be an issue,it was for us,it can make kids feel so

angry,zithromax worked very well for us

]

>

--

Cotter

5 Pollerton Manor

Carlow

059 9134964

087 2637921