Re: Enzymes working again!!!!

[Guest guest]

--Sally,

I am so glad to hear your son is on the way back and feeling better! I

feel really bad for the time you went through this holiday. It is

really scarey to see your child change right before your eyes. My son

regressed so quickly when we put him on nystatin I was afraid he never

would be the same. It took a couple of days but his behavior changed

markedly (better) when we cut the dose WAY back. In my sons case he

seemed to be fine untill he had his shots at 15 months of age and all

of a sudden like turning on a light switch he started hitting me and

biting his hands and just down right got aggressive! I never could

understand how a baby could be so happy and easy going one day and

then another day be so different. I never made the connection because

I had nevr heard of this type of behavior related to vacs/ only

classic autistic behaviors/non-verbal,stimming etc and my son did not

do that. He just got more agressive,nasty and obsessive as each month

went by.

I think you guys are on the right track about the metals deactivating

(so to speek) the enzymes. My son is loaded with metals and I know

that is why he cant tolerate many foods so it makes sense to me if you

start moveing metals around the gut that the metals would destroy the

enzymes as well. Things are moveing so fast in this dept. I feel like

we are on the cutting edge of figuring out so much information to help

our kids. Thank God for this board! Good luck Sally I will be thinking

of you and your son.

Patti

- In @y..., " sam_hsmom " <redmiller@m...> wrote:

> To recap: My ds started having monster reactions to casein (and

> probably everything else) a week ago while taking enzymes. After

> posting on the list, we figured out it was the Metal-free chelator I

> was giving him, causing metal (mercury???) to deactivate the

> enzymes. I've stopped the metal-free, and we had some *very* scarey

> days. One day, he had slipped from Aspergers to full blown autism

> (didn't want to be around any people at all, and seemed like he

> didn't even understand what people were saying).

>

> helped me out with this quite a bit off list (she's a

> saint!!!), and the only thing that makes sense is that the metal was

> binding to the enzymes and deactivating them. Apparently, that rogue

> metal has moved on (*hopefully* out of the body, but who knows?!) and

> the enzymes appear to be working fine now. (I know this sounds like

> Tom may have just not tolerated the Metal-free, but it was very

> apparent he was having reations to *food*).

>

> Tom is not quite back to the level he was before all this happened,

> but apparently, the " happy child effect " is working again, and Tom

> has improved 100% from just 2 days ago. It was the prayers of the

> faithful that brought us through the scariest time of my life. My

> heart goes out to all of you who watched your toddlers slip into

> autism (Tom's was much more subtle and I was clueless). I felt like

> I was watching the same type thing this week with Tom (and he's

> 7yo). I pray we all get our children back completely.

>

> Question to all you chelators: When using DMSA or ala, have any of

> you seen the enzymes apparently not working for a time? I'm more

> convinced than ever that mercury and other metals are a big problem

> for Tom, but am freaked out by the metal-free. We have an appt. with

> Dr. Amy in 3 mo.s, and I'd love to have started DMSA only before

> then. Any experience with how this works with enzymes would be most

> appreciated. Thanks.

>

> God Bless, and Happy New Year,

>

> Sally

[Guest guest]

Dear Patti:

Your story is frightening becuase that is what happened to my daughter after

her 4 month shots, She bit her hands so bad that they bled and she had no

teeth. She screamed at length and did not sleep. She had 8 seizures. She

lost eye contact and stopped babbling. The same thing one day she's fine the

next miserable. Fortunately(if you can call it that), I have a son with PDD

and I knew immediately she was going down the same path. My pediatrician

referred us to a neurologist but refused to believe it was from the

shots...Autism is genetic he told us... there is a possibility she could have

it. We never saw the neurologist(worthless in my opinion) We stopped all her

shots and made sure that both of us were GF/CF, started treating her for

yeast and giving her Cod liver oil. She will be a year old on January 13 and

seems to be typically developing although has many allergies which aside from

my son no one on the family has any. Anyway, my heart just breaks when I

think of all of us who delivered healthy babies only to have them hurt by

vaccines.

Holly

[Guest guest]

> To recap: My ds started having monster reactions to casein (and

> probably everything else) a week ago while taking enzymes. After

> posting on the list, we figured out it was the Metal-free chelator I

> was giving him, causing metal (mercury???) to deactivate the

> enzymes. I've stopped the metal-free, and we had some *very* scarey

> days. One day, he had slipped from Aspergers to full blown autism

> (didn't want to be around any people at all, and seemed like he

> didn't even understand what people were saying).

I have had days like this. I refrain from posting on message boards

and sending email when I am like that. My reaction is generally

because I ate a high phenol food.

>

> helped me out with this quite a bit off list (she's a

> saint!!!), and the only thing that makes sense is that the metal was

> binding to the enzymes and deactivating them.

My son has had *bad* chelation days, and I attribute it to the metals

which are coming out, attacking his digestive organs and disabling

them.

Does your child have dental fillings? That can definitely be a cause

of the reaction you indicate.

I found the ingredients of metal-free here

http://www.metal-free.com/id17.htm

I will give you my comments:

It starts with the comment " The peptides in METAL-FREE " . The word

" peptide " got my attention. That sounds like language used in gfcf

research. knows more about that than I do, but it does make me

suspicious that maybe your child did have at least SOME sort of

reaction to the metal-free itself.

It indicates active ingredients of algae and probiotics. I have heard

pro and con about algae, including that it contains metals. I also do

not know how these two things would chelate metals, but maybe they do.

It includes an enzyme and sea minerals. Some minerals chelate metals,

like zinc chelates copper. This in itself can cause a nasty reaction,

depending on how highly copper-toxic is your child.

The enzyme thing is suspicious to me. It contains enzymes which it

says " bind to metals " , but you are right, it might be the other way

around also, the metals are binding to the enzymes. What does your

enzyme supplier say about the enzymes you are using, and whether or

not they may be binding with metals coming out instead of breaking

down foods? [i don't know if I trust this description from the

metal-free site, because I found something that I do NOT believe is

accurate, see below, but might be worth asking your enzyme supplier.]

It includes glutathione, which causes negative reactions in some

children.

It includes lipoic acid, which is ALA, but does not indicate how much

of this it includes. How much is indicated on the product you have?

I accidentally gave my son a little more than usual once, and he

became rather aggressive.

It also says concerning the ALA -- " Lipoic acid has been used for many

years to protect the liver and to help detoxify the body of heavy

metals, such as excessive copper and iron and toxic metals such as

cadmium, lead and mercury. " However, on the autism treatment FAQ, it

says " LA should not be used if there has been recent mercury exposure

(within 3 months) or if your child has high copper levels, since LA

reduces copper excretion. " So this is directly contradictory, and

personally I would trust the autism treatment FAQ over the metal-free

site. So now I have found an instance where I believe the metal-free

site is giving completely inaccurate and potentially dangerous

information. If your child is high copper and you are giving

metal-free, and also depending on how much ALA it contains, that can

be a cause of the reaction you saw.

Apparently, that

rogue

> metal has moved on (*hopefully* out of the body, but who knows?!)

and

> the enzymes appear to be working fine now. (I know this sounds like

> Tom may have just not tolerated the Metal-free, but it was very

> apparent he was having reations to *food*).

It can be this also, when my son is " on-round " he does seem to " react "

to foods sometimes, but not usually, but I think it is actually a

reaction to the metals themselves which are moving thru the gut, and

not food per se, altho your child may be different.

I am very glad your child is much better now.

> Question to all you chelators: When using DMSA or ala, have any of

> you seen the enzymes apparently not working for a time?

As I have described, to me I believe my son's difficulties are a

reaction to the metals coming out. I give ALA with enzymes

occasionally, and he still digests his food and the metals are still

coming out. Also, the bms on-round are different color and slightly

mushy, and a little burning on his bottom if I give too much chelator.

ALA excretes thru the gut, so this makes sense to me.

ALA can increase a yeast issue also, because the metals moving thru

the gut will make a yeast-prone child more prone to yeast.

Also, my kids have had a skin rash on some rounds, which I think it

metals binding to the skin and/or an allergic reaction to the metals

themselves. I know personally I cannot wear jewelry or other metals

against my skin, because I get a rash.

> I'm more

> convinced than ever that mercury and other metals are a big problem

> for Tom, but am freaked out by the metal-free.

I would personally not use metal-free, especially after the

information I just found and my opinion on it.

We have an appt.

with

> Dr. Amy in 3 mo.s, and I'd love to have started DMSA only before

> then. Any experience with how this works with enzymes would be most

> appreciated. Thanks.

I don't use DMSA but ALA with HNI enzymes works just fine for my kids.

Dana

[Guest guest]

I read the ingredients for the metal-free very carefully a couple

times. One of the ingredients in Metal-free is called

Peptidylgluconase. I tried to look up what kind of enzyme this was

but couldn't find it anywhere. I asked Devin if it was a real enzyme

or a made-up name? He said it isn't a regular enzymes and is probably

a blend with a fancy marketing name on it. Something that works on

proteins (peptidyl) and sugars (glucose). He said gluconase isn't

even a real enzyme in itself.

In chelation, the chelator doesn't just go through the body and grab

a metal and leave...doesn't it set up a equilibrium gradient? So the

more metals removed also indicates the more metal ions left

circulating in the body. A little bit of these in the gut could cause

some damage. It doesn't sound like the Metal-Free is inclined to let

the metals go in the gut like other chelators can because it binds on

two sites and not just one. I wrote the company about the entire

enzyme/metal situation and it will be interesting to see what they

say. I will be very pleased to post whatever reply I might get.

Sorry, I don't mean to drag on about this, but I think we are getting

somewhere. It would be nice for others not to get the unpleasant

surprise Sally did.

Thanks for your patience.

.

[Guest guest]

Dana,

I see your point, and I'm not defending Metal-free at all, but I do

know Tom was taking it for 2.5 weeks with apparently no reaction to

it at all. Also, I am quite sure when things started to spiral

downward, Tom was reacting to the food he ate, and not the metal-

free. I had stopped the metal-free, but couldn't stop feeding

him :0). When it first happended, we had been having a *great* day

and then 90 min. after Tom ate pizza, he had his *classic* casein

reaction (I have seen it before.) I know pizza is high phenol, but

Tom has eaten it *many* times before with Houston enzymes and had no

reaction like this.

Then (although things were not good because of the pizza reaction),

Tom just kept spiralling downward whenever he ate. It always

happened about an hour after he ate. It was awful. Then, just as

suddenly as it came, it went. I can pinpoint the meal when the

enzymes began working again (Tom was already over his casein

reaction, but not all the other foods). We had stayed cf after the

pizza and one other reaction.

Tom is actually low copper and high zinc, so we should be ok in that

department *if* I decide to try the metal-free again. I have posted

a question about this on the a/m board, but haven't gotten over there

to see if anyone replied yet. Also, Tom has no fillings. I would

never think to chelate if there was mercury in his mouth.

We actually had a *wonderful* day today. Tom played well with his

brother and cousins. He went and got his grandfather a pillow when

he was getting ready to take a nap without being asked to do it. My

dh was floored to see this and has mentioned it to me several times

since :-).

Our dr. called me today (went in the office and heard my frantic

message on their machine - their office doesn't reopen until Wed.)

He thinks metal deactivating enzymes is probably what happened.

We're going to run some tests (blood chem.) and go from there.

Dh and I have made no firm decisions about how to chelate from here

(but are fairly certain it must be done). As I said, we have an

appt. with Dr. Amy in March. We're going to pray about all this, and

make a decision when we have some more clear facts from the tests.

Dana, I appreciate all the info. you provide. Thanks for being such

a reliable resource. Your ds' story has motivated me many times.

Thank you.

God Bless,

Sally

[Guest guest]

> Dana,

>

> I see your point, and I'm not defending Metal-free at all, but I do

> know Tom was taking it for 2.5 weeks with apparently no reaction to

> it at all. Also, I am quite sure when things started to spiral

> downward, Tom was reacting to the food he ate, and not the metal-

> free. I had stopped the metal-free, but couldn't stop feeding

> him :0). When it first happended, we had been having a *great* day

> and then 90 min. after Tom ate pizza, he had his *classic* casein

> reaction (I have seen it before.) I know pizza is high phenol, but

> Tom has eaten it *many* times before with Houston enzymes and had no

> reaction like this.

>

This does seem odd that he did okay with the metal-free for a few

weeks, and did okay with pizza and enzymes for a few weeks, but then

suddenly there was this reaction. You are probably right that the

metal-free somehow was affecting the enzymes, but could there have

been another triggering factor? Just something to think about.

Also, I know that certain metals are " more stubborn " than others, or

maybe it is just certain chelating agents attach some metals first,

but whatever, it appears that some metals come out first, then others,

etc. I am not too familiar with metal-free, but it might be that

after a few weeks, the metal-free was grabbing another metal because

the previous metals were then gone, so it was this " new " metal which

was causing the problem you saw.

Just a few observations. But I do definitely agree with you to stop

the metal-free and the casein, probably until you talk with Dr. Amy.

I am very glad your son is better now.

Dana

[Guest guest]

> Also, I know that certain metals are " more stubborn " than others,

or

> maybe it is just certain chelating agents attach some metals first,

> but whatever, it appears that some metals come out first, then

others,

> etc. I am not too familiar with metal-free, but it might be that

> after a few weeks, the metal-free was grabbing another metal

because

> the previous metals were then gone, so it was this " new " metal

which

> was causing the problem you saw.

Dana,

Now this is a good point! Hadn't thought of that, but I would think

it is definitely possible. Tom continues to improve, but not yet

back to pre-disaster status. His appetite is back, and he is asking

for all kinds of foods all the time. I sort of think he may be

looking for the " buzz/reaction " that he got last week when the

enzymes weren't working. Think this is possible?

Thanks.

God Bless,

Sally

>

> Just a few observations. But I do definitely agree with you to

stop

> the metal-free and the casein, probably until you talk with Dr. Amy.

>

> I am very glad your son is better now.

>

> Dana

[Guest guest]

> His appetite is back, and he is asking

> for all kinds of foods all the time. I sort of think he may be

> looking for the " buzz/reaction " that he got last week when the

> enzymes weren't working. Think this is possible?

>

This happens with my son when I try to re-introduce a food to see if

he can tolerate it with enzymes. If he does not tolerate it, it will

trigger him eating lots of stuff for a few days, trying to get his

buzz.

Dana