Is this why some professionals don't recommend NDF Plus?

Discuss autism diets and biomedical treatments of autism.

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TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Postby TamiW » Mon Dec 19, 2005 3:17 pm

Kenny,
I think your opinions are just as valuable as anyone else's, especially mine. And I do think it was a good, fair post, even if your opinion is different than mine! :D
Tami

Guest

Postby Guest » Mon Dec 19, 2005 3:38 pm

I was wondering- how many people here are bothered by the huge wiggle room and very little hard data when it comes to chelation? Take 5 chelating ASD families, you will likely encounter 5 different protocols all supposedly doing the same things. DMSA, ALA, EDTA, NDF & comp, PCA, DMPS etc plus any number of combos and dosing schedules of the above. All with huge fans and critics. Take the Andy Cutler- DAN! conflicting recs for example. It really worries me (we are using DMSA, by the way) that we are more or less experimenting here, and even if our children DO have heavy metal poisoning we really DON'T know the best way to treat it. If we really knew what worked we wouldn't have this many to chose from, don't you think? We made the decision to continue with our son, for now at least, but frankly, does anyone really think they really KNOW what they are doing? I know we sure don't.
Alex's mom

Srinath

DMPS

Postby Srinath » Mon Dec 19, 2005 3:50 pm

Well not really that confusing ...
EDTA is old school, mainly used for lead but its still old.
DMSA is what superceded EDTA for lead and mercury, its FDA approved for use in kids and plainly better for all.
DMPS - maybe the new successor to DMSA and its waiting for FDA approval in kids I believe.

PCA is clathration not chelation. Basically the best option if you have a sulpha allergy, since I believe both DMPS and DMSA are sulpha drugs.
NDF is a bio logical chelator whihc basically is very herbal and natural and a chelator that pulls only the bad, but is a slow chelator.

ALA, Glut, and others are all suppliments designed to improve the enzymes and hormones function of actually excreting the metals.
They all work as a team, NDF is also used to finish the chelation job, as in, say you wanted to level a whole mountain ... you use a good bit of dynamite, then you wanna just move some rocks around and grade it out, You'd use a shovel ... dynamite is like dmps or dmsa, the shovel and wheel barrow is NDF. The more harm than good applies to the heavy artillery after a point. If you dont have much bad stuff, using such a strong chelator will pull all the good out. Just my interpretation. Correct me if I am wrong.
Cool.
Srinath.

TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Postby TamiW » Mon Dec 19, 2005 4:10 pm

Alex's mom,
I know what you are saying. Twenty years from now there will probably be a "set protocol" on how to properly chelate for mercury poisoning, lead poisoning, arsenic poisoning. But now there are so many protocols that it's like a poker game. Play the right hand and, YOU WIN!!! It's frustrating. But just think of it this way, we are paving the way for many to recover their kids from this awful poisoning. I wish there was an easier way. I wish there was a map that we could all follow. But I think it's all of us who are chelating right now that are actually drawing the map. Noone wants to be running into walls but until the map is drawn, we don't know where to turn. I can't possibly KNOW that the way we are doing it is the RIGHT way. :( But I can tell as Gavin gets better and better and we are able to successfully take away treatments, that we are starting to drive in the right direction. :wink: It's not easy, that's for sure! I think the only way we don't drive off a cliff is by other parents screaming out the window that we are too close to the edge. But honestly, it is so worth all the dings in my bumper! :lol: Big hugs!

Srinath,
I like your explanation of chelators. :D I think it's pretty accurate. Dynamite and a shovel....makes sense to me! I think Alex's mom may have been talking about so many different ways to use the chelators. There are tons of different protocols; 3 days on 4 days off, every other day, 3 days on 11 days off, every 3-4 hours, every 8 hours. It's crazy hard to know which one to go with. :shock:
Tami

Guest

Postby Guest » Mon Dec 19, 2005 4:24 pm

Tami:
That's exactly how I feel. And I don't want to miss out on anything but at the same time I hate it when even experts in the field contradict each other. For example- to add or not to add ALA? My doc says no, DAN! says yes. Andy Cutler (whose attitude I generally dislike to be honest which is why I dropped off the yahoo mercury list) says anything other than every 4 hours is wrong and potentially dangerous, yet DAN! says every 8 is just fine etc, etc. Now this NDF debate. The "grasping-releasing" mercury sounds appealing in theory, but has that even been proven?
Not that I expect any definite and categorical answers (and actually my son seems to have more of a lead than a mercury problem) but this whole thread just reminded me of how new this whole territory is.
Hopefully our kids and others will benefit from our struggles. I wish someone would run studies comparing different chelation protocols, not that I expect to see any of those any time soon.
Well....best of luck to everyone
Alex's mom

Maryanne W
Posts: 60
Joined: Sun Sep 18, 2005 8:57 pm

Postby Maryanne W » Mon Dec 19, 2005 9:25 pm

Tami/Dana - How long were you guys using NDF+ before adding the prescription meds? - We did the chelation challenge with my daughter (oral DMPS) and she came in high with mercury - there was some lead and thallium - but no where near the mercury amounts - I'm considering going this route sometime in the near future (but she is starting school for the first time January 3 - so I want to give her time to make the adjustment from home based therapy to school before jumping into something new biomedically) -Thanks, Maryanne
Maryanne W

TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Postby TamiW » Tue Dec 20, 2005 1:01 pm

Ionic bond
Below is some info I received from BioRay in regards to the initial post on this thread.

"From Wikipedia, the free encyclopedia.

“Ionic bonds are a type of chemical bond based on electrostatic forces between two oppositely charged ions. Often ionic bonds form between metals and non-metals. Pure ionic bonding doesn't exist. All ionic bonds have a degree of covalent bonding (double bond) or metallic bonding.”

The chlorella cell wall in NDF and NDF Plus is a mucopolysaccharide (non-metal) ion exchange resin, and forms both ionic and double bonds with the metals it comes into contact with. It can therefore be thought of as a chelator. NDF Plus is manufactured with the exact methodology used to produce a ‘clathrating agent’, a bond that completely encloses the bound metal material, and this in addition to the ion exchange resin in the chlorella cell wall.


Maryanne,
We did oral DMSA (Dec 2000) for over two years prior to NDF PLUS. Then we stopped DMSA. A few months later added in the NDF PLUS. (January 2003) Last year (don't have the month in front of me 2004) we started using NDF with the NDF Plus. We just added in TD DMPS in end of May/early June of 2005.
Tami

Kenny V

Postby Kenny V » Tue Dec 20, 2005 2:48 pm

I was wondering- how many people here are bothered by the huge wiggle room and very little hard data when it comes to chelation? Take 5 chelating ASD families, you will likely encounter 5 different protocols all supposedly doing the same things. DMSA, ALA, EDTA, NDF & comp, PCA, DMPS etc plus any number of combos and dosing schedules of the above.

Alexe’s mom Id like to comment with the understanding that it would be taken constructively.
BTW I did comment on this type of Q if you go back a page and take a quick look.


All with huge fans and critics. Take the Andy Cutler- DAN! conflicting recs for example.

I understand and it is shame we don’t have unity here or its in the last Dan 2005 consensus report.
I think this may be coming soon in the next years or so.
What I would say again is you need to re- visit ALL the arenas see what parents are doing and also listen to ALL of the reports.
In fact it wasn’t till I got past the AC stumbling block until I reconsidered my protocol and realized what I was doing wrong. Then my child started to do better.


It really worries me (we are using DMSA, by the way) that we are more or less experimenting here, and even if our children DO have heavy metal poisoning we really DON'T know the best way to treat it.


Either do they in fact that was the major discussion among all the doctors at the Boston Conference.
4 Q’s kept coming up
What is the best chelator?
How should we implement the protocol?
How do we interpret the tests results ?
And when do we know when we are done chelation?



These are the Qs I may ask myself
May I ask how are you using DMSA?
Oral or transdermaly
What may be your dosing schedule and or what type of rounds are you doing?
(Who’s protocol?)
How long have you been at it have you seen progress and what may be the problem with it?


Only want to offer encouragement BC we don’t have any problems whatsoever and feel it is going rather well.
We have progressed every round for the past nine months and continue to move forward slow and steady.
I cant say we didn’t have problems, but what I can say is that I have learned what they were from and have adjusted either protocol or supporting supplementation
.

If we really knew what worked we wouldn't have this many to chose from, don't you think? We made the decision to continue with our son, for now at least, but frankly, does anyone really think they really KNOW what they are doing? I know we sure don't.
Alex's mom



We have chelated over 3 years ago DAN! Protocol and picked back up 9 months ago. (AC protocol.)
Long story but in short we lost over a year and a half in progress autho we weren’t regressing, but I knew something was missing. I am not being proud or arrogant here, but I will say it wasn’t till I lost the TRUST in my treating physician in what HE knew about chelation, and picked back up the ball. That my son continued to get better after I leaned to read the child not the test etc… And look at their progression /regression as a tell- tale of how we were treated biomedicaly.



On all these biomedical boards, I have always read what many have done, but it wasn’t until I had made an application until I got it.
It’s a leaning process. This was the biggest lesson I had learned so far.
To read my child in what his body was telling me what it needed.

I hope this may help someone here, even if it helps open up a few q’s that you may want to ask yourself


Kenny V

Guest

Postby Guest » Tue Dec 20, 2005 2:52 pm

Thank you Kenny, I would like to hear more about your experience with your child. You make good sense!!

Guest

Postby Guest » Tue Dec 20, 2005 2:53 pm

above post by respect

Guest

Postby Guest » Tue Dec 20, 2005 4:01 pm

Kenny:
Of course you may ask.
These are the Qs I may ask myself
May I ask how are you using DMSA?
Oral or transdermaly
What may be your dosing schedule and or what type of rounds are you doing?
(Who’s protocol?)
How long have you been at it have you seen progress and what may be the problem with it?

We do 100% per DAN! protocol, every 8 hours. Oral DMSA. Done that almost 2 years, but really ramped up the dose 1.5 years ago. My son has progressed, no question about it, but I very strongly feel it's not due to the chelation. I see a huge correlation between his skill development and the quality/quantity of direct instruction/therapy that he has. I see absolutely no correlation whatsoever between whether or not he gets chelated and his skills. I have also not noted any correlation at all between vaccinations and regression. And when it comes to my son I think I'm pretty observant.
The one and only reason I am continuing is that he had elevated lead levels (which is picked up by DMSA) and many fine motor difficulties that I'm hoping I can help by removing the lead. It's a leap, here's hoping that the damage can be reversed and that long-term drugs like DMSA are safe for kids this young. I am planning to continue until the metal levels go down substantially. I am encouraged that they are decreasing on paper, but since I am not seeing a big effect on my son's skills, I'm afraid I'm treating a number.
I remember a post on the yahoo mercury list (a while ago, I don't read that any more)- someone who was posting they had recovered their child. Proof- all biomedical parameters had normalized. Great. One little problem- the child was a 7 or 8 year old who was functioning like a typical 3 year old (per mom who was obviously very happy with their "recovery"). Call me crazy, but how exactly is that a recovery? My son is 5, functions like an older 3 and I find him very impaired by the 2-year gap at such a crucial age where every month counts.

alex's mom

srinath
Posts: 941
Joined: Tue Dec 20, 2005 12:33 pm

2 years

Postby srinath » Tue Dec 20, 2005 8:48 pm

2 years on DMSA - I actually know a local mom who did the same thing. Switching to TD DMSA and the progress skyrocketed. Stomach acids kill too much of the drug, TD bypasses most of that. Her son is 7 right now. He's almost normal evidently 90% of the time, diet and other transgressions and he sorta shows regressions for 1-2 days. He is in regular school and they are very strict with his diet.
BTW you'd now despair at the 2 year gap in development, but guess what, keeping him at that 2 year gap will mean he gets to the 16 yr brain development level at 18. So what. When he's 30 he'd act like a 28 yr old, pretty much gets blurry past the 12-14 yr mark any way doesn't it. It is good progress. My 3 yr old is not working at the 1.5 yr old level. he's improved 2-3 months in 2 weeks on NDF. though there are frequent blips of regression, overall its been steady ish.
Cool.
Srinath.

Kenny V

Postby Kenny V » Wed Dec 21, 2005 1:57 am

Alex's mom I do understand your comments can understand where you may be at, but also have the impression that there is more to dial into.Also have so many Q’s for you in return of what you wrote.
It is my hope they might open up a few areas that bare further discussion.

I am not good at this type of communication because when you take a post and comment on what was written oftentimes it seems you are commenting against what is written rather than commenting on it and suggesting to look at things another way. Yes and perhaps a change in the current biomedical approach. I will try to comment on what you had written but forgive me if it may seem as if I am challenging your view, think of it as rather of help bring a reasoning to what was stated.
Honestly I think a personal e-mail would be more appropriate and a personal phone call would do justice.
I am willing to call from anywhere in the County. My email is Ken @kep.com


I will comment on what you wrote, but first would like to comment on my comment.

Also when you have a child that is doing so well and a specific chelator there is no reason to change the chelator if it is accomplishing what you set out for it to do. Its just makes too much sense. (Again that is just my opinion)

OTH when a child is not responding to chelation and not attaining what you have set out to do oftentimes something needs to be changed.



We do 100% per DAN! Protocol, every 8 hours. Oral DMSA. Done that almost 2 years, but really ramped up the dose 1.5 years ago.

Ok First of all there is no 100% Dan! Every doctor is different in how they treat the child with all other supplementation ands also assisting chelation.
Also like to say the upping a dose doesn’t always mean you are excreting more heavy metals.
We are doing Low dose 22mg DMSA and 10Mg ALA and see a benefit every round.

My son has progressed, no question about it, but I very strongly feel it's not due to the chelation
.
Well if you feel so strongly, I would only say that you know your child the best and what interventions have been effective I agree with you %1000. However if you have not exhausted the chelation issue then you may be missing something.

I see a huge correlation between his skill development and the quality/quantity of direct instruction/therapy that he has. I see absolutely no correlation whatsoever between whether or not he gets chelated and his skills. I have also not noted any correlation at all between vaccinations and regression. And when it comes to my son I think I'm pretty observant.
Same comment as above
Autho we have awesome VB/ABA for our son and I cannot deny is has helped tremendously. But there is no doubt in the every area of biomedical that we are addressing his physical healing s that educational could not address.


The one and only reason I am continuing is that he had elevated lead levels (which is picked up by DMSA) and many fine motor difficulties that I'm hoping I can help by removing the lead. It's a leap, here's hoping that the damage can be reversed and that long-term drugs like DMSA are safe for kids this young. I am planning to continue until the metal levels go down substantially. I am encouraged that they are decreasing on paper, but since I am not seeing a big effect on my son's skills, I'm afraid I'm treating a number.


Again I must say
It’s a leaning process. This was the biggest lesson I had learned so far.
To read my child in what his body was telling me what it needed. Not a test.

I do believe, heard and seen parents using chelators and changing them based on the child’s Hm profile.
I also know of parents who have severely toxic children who are aggressively chelation Mercury and lead at the same time alternating chelators on rounds such as DMSA/ALA for one round a month and also DMPS /ALA for the other rounds. This makes sense to me based on what I understand about chelation


I think allot of parents think because they see one heavy metal or another they think that is the rule and not the exception to what they may use as a chelator. . What I would say is many times lead is shown and progress is made but they haven’t got to the underlying mercury issue.



I remember a post on the yahoo mercury list (a while ago, I don't read that any more)- someone who was posting they had recovered their child. Proof- all biomedical parameters had normalized. Great. One little problem- the child was a 7 or 8 year old who was functioning like a typical 3 year old (per mom who was obviously very happy with their "recovery"). Call me crazy, but how exactly is that a recovery? My son is 5, functions like an older 3 and I find him very impaired by the 2-year gap at such a crucial age where every month counts.

alex's mom


That is someone’s story and what if it was mine. ? Ya know some people look for progress with hope for recovery.
And if that is where they are at and is steps forward from where they were, than I must praise God for the progress that they made. IMO is not fair or proper to even compare no less speak in this tone. I think you have a stumbling block as well as some residual bitterness towards other environments.

Again I would say
You need to re- visit ALL the arenas see what parents are doing and also listen to ALL of the reports. Now my other advice would be for anyone who is looking to chelate their child would be to choose a chelator that would be specific for their child’s Hm burden. Do you know how many times I have read of parents who tested and showed NO levels of heavy metals, went on to chelate and then started dumping metals.

Our children are poor excretors that is one of the reasons they have problems in the first place.
When it comes to heavy metal toxicity There is no one rule book however their are a few that may help explain things better.


http://www.noamalgam.com/hairtestbook.html
http://www.noamalgam.com/

Read here, good explanation in what many docs miss
http://home.earthlink.net/~moriam/HOW_TO_hair_test.html


And if we have a Doc who is by the book, one stop shopping……..
………… Dan! Or any other approach he’s gonna miss reading the child.

Kenny V

Kenny V

Postby Kenny V » Wed Dec 21, 2005 2:17 am

Posted: Tue Dec 20, 2005 2:52 pm Post subject:
Thank you Kenny, I would like to hear more about your experience with your child. You make good sense!!

Posted: Tue Dec 20, 2005 2:53 pm Post subject
above post by respect


December Update
http://health.groups.yahoo.com/group/Au ... age/157942

November Update
http://health.groups.yahoo.com/group/Au ... age/156040

Sorta pieced together Bio of my son

http://health.groups.yahoo.com/group/Au ... age/155337

Guest

Postby Guest » Wed Dec 21, 2005 3:05 am

Quote:

I remember a post on the yahoo mercury list (a while ago, I don't read that any more)- someone who was posting they had recovered their child. Proof- all biomedical parameters had normalized. Great. One little problem- the child was a 7 or 8 year old who was functioning like a typical 3 year old (per mom who was obviously very happy with their "recovery"). Call me crazy, but how exactly is that a recovery? My son is 5, functions like an older 3 and I find him very impaired by the 2-year gap at such a crucial age where every month counts.

alex's mom


That is someone’s story and what if it was mine. ? Ya know some people look for progress with hope for recovery.
And if that is where they are at and is steps forward from where they were, than I must praise God for the progress that they made. IMO is not fair or proper to even compare no less speak in this tone. I think you have a stumbling block as well as some residual bitterness towards other environments.


Alex's mom does not sound bitter -- she sounds educated (and worried!) about the complexities of development. A 7 or 8 year old who functions developmentally as a 3 year old is nowhere near "recovery." A recovered child has chronologically age-appropriate skills. Certainly any parent celebrates gains, but "improved" is not "recovered." A child can continue to make developmental "gains," but chances are the rate of acquisition is slower than typically-developing peers, and the gap widens as the child ages rather than remaining stable.

I too have noticed parents reporting their children as "nearly recovered," and by all indications, they are very significantly behind in almost all skill areas. I think it must be in part the tendency of all of us to hope and celebrate every small gain. Having been on lists for quite some time, I have even noticed parents that unintentionally "reinvent" history, which dramatizes gains but probably serves to strengthen their resolve. I also think that many parents don't know where their child is functioning developmentally via any objective measure -- perhaps the public school three-year evaluation schedule is partly to blame -- and are sometimes shocked when those results are presented. Perhaps some parents become so focused on lab results they are distracted from the bigger picture...or feel that a normalization of labs should = a normalization of functioning.

BTW you'd now despair at the 2 year gap in development, but guess what, keeping him at that 2 year gap will mean he gets to the 16 yr brain development level at 18. So what. When he's 30 he'd act like a 28 yr old, pretty much gets blurry past the 12-14 yr mark any way doesn't it.


That is just not how development happens -- at all. I wish it did. But I hope your son continues to enjoy rapid gains (btw, my earlier comment regarding the difficulty of learning language and social skills in response to your bicycle analogy was made in regard to our children, not you).

Winnie

Guest

Postby Guest » Wed Dec 21, 2005 3:22 am

Hi Kenny,

I just read your posts in your links regarding your son. They were very touching and full of hope -- I really enjoyed reading about your success AND about how much you cherish the successes of your son. The emotion really comes through in the print -- you must be an awesome Dad.

Just wanted to say that I may have viewed your admonishment of Alex's Mom a little differently than you intended...

Hope the successes keep coming.
Winnie

srinath
Posts: 941
Joined: Tue Dec 20, 2005 12:33 pm

Recovery

Postby srinath » Wed Dec 21, 2005 7:10 am

Anonymous wrote:
BTW you'd now despair at the 2 year gap in development, but guess what, keeping him at that 2 year gap will mean he gets to the 16 yr brain development level at 18. So what. When he's 30 he'd act like a 28 yr old, pretty much gets blurry past the 12-14 yr mark any way doesn't it.


That is just not how development happens -- at all. I wish it did. But I hope your son continues to enjoy rapid gains (btw, my earlier comment regarding the difficulty of learning language and social skills in response to your bicycle analogy was made in regard to our children, not you).

Winnie



I said about that 2 year gap. It was in response to the 7 year old acting like a 3 year old after chelation and recovery. You are looking at a kid whose impairment has just been lifted or sorta reduced to an un noticeable level. I was just explaining that if that 4 year or 2 year gap persists we wont have much to worry about. The problem was our kids are acting like 3 or 4 or 5 or 6 or what ever is their age at times and at others like a 1 year old. In some aspects my son is very close to his age, in others he's a 1 - 1.5 yr old. He also vacillates between smart and stupid. Like his dad ... :lol: ... anyway we want to see how much of it is mercury and how much is his nature. BTW I am in line for the ABA school, only I will have done 1 year of chelation on him by that time. Just getting to all aspects but the order has been dictated by circumstances. I am in a position to exactly point out what is the result of chelation and what is therapy. Since we are waiting for everything at this point where it comes to therapy ...
Cool.
Srinath.

TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Postby TamiW » Wed Dec 21, 2005 10:09 am

Kenny,
I read your updates. WOW! The reason I decided to read them is because I do believe your dosing advice may be helping Gavin. No aggravations. No irritability this round. First time in a very long time, however we have made some other changes, that I KNOW is definitely helping. I will post my update soon, but want to hold off to be sure what I am seeing is accurate over a little more time. Thanks for joining us here. Thanks for the calls.

Alex's mom,
I promise I will not say Gavin's recovered until he is. I have other parents who've said he's recovered, but I quickly correct them cause he still had gaps that they couldn't see. He has recovered a great deal, but until we are on the other side of autism and we have no regressions, he will not be considered recovered to me.
I do see how others could consider their kids recovered if they were still behind. IF their child had been stimming, completely lack of social skills, and not communicating, then all this starts to happen....It's such a change to normalcy, that they probably think "THIS IS IT." We've been there. Many years ago, I thought we were done, but he was too young to see the gaps that were there compared to the other kids his age. Now I get to compare. I see those gaps and those are what I am trying to close (with much success!). There have always been regressions. But I wonder if we've been missing a few important pieces that we now have, all along. I sure hope so. Big hugs!
Tami

Guest

Postby Guest » Wed Dec 21, 2005 10:42 am

It was in response to the 7 year old acting like a 3 year old after chelation and recovery. You are looking at a kid whose impairment has just been lifted or sorta reduced to an un noticeable level. I was just explaining that if that 4 year or 2 year gap persists we wont have much to worry about.


I think by "functioning" we are talking about domains such as cognitive, language, speech, social/emotional, etc. A 7 year old functioning like a 3 year old in these areas is VERY noticeable, and would probably not even be considered "high-functioning" (using the term for illustration only). How would one place a child, who is developmentally at the preschool level, in the second grade and expect him to indistinguishable and benefit from a typical 2nd grade classroom? The child will not just "awaken" from a 4-year gap and begin participating with same-aged peers -- there is a long, hard road left to go, meanwhile, typically-developing children are continuing to develop at a rapid rate.

This is why I am skeptical of any "survey" type (parental report) findings being used as evidence of effectiveness. This is also what concerns me about riding on "testimonials" alone. We as parents are emotionally biased -- we can't help it -- and one parent's idea of "recovery" may be very different from another's.

I am in a position to exactly point out what is the result of chelation and what is therapy. Since we are waiting for everything at this point where it comes to therapy ...


You are in an interesting position -- and if you have some objective measure of his skill area every six months or so, that might prove to be some very interesting data. You need a baseline for comparison -- like everything else I suppose.

Winnie

Guest

Postby Guest » Wed Dec 21, 2005 7:38 pm

Kenny:
First, I really appreciate your civile tone. Too much judgment and sarcasm are passed around in the name of mercury these days.

Second,congrats on your son's progress. You must be so proud. I'm sure it's great to reap the results of your and his work.

Thirdly, when I meant DAN! protocol I should probably have said that we are using what Dr. McC suggests in her book. Based on body weight, which for my son amounts to 150 mg DMSA (yes, wow, I know) every 8hours. Since metals are coming out with every test in a fairly predictable sequence, I'm assuming it's doing what the book at least says it is supposed to do. Lead was off the charts,now it's coming down and now we see mercury. Apparently however, my son hasn't familiarized himself with the book, as dumping or not mercury doesn't seem to phase him much, as I mentioned before. Seeing the urine metals is one of the reasons we haven't switched (plus our doc didn't recommend it, I'm going to defer to her for the time being since she has chelated a few hundreds and I've only done one). I'm sure there are many other options we could try, and I haven't yet ruled them out, but if the theory is that the endpoint is dumping metals ...well, my son is already doing that.

And if that is where they are at and is steps forward from where they were, than I must praise God for the progress that they made. IMO is not fair or proper to even compare no less speak in this tone. I think you have a stumbling block as well as some residual bitterness towards other environments.


Oh, there is no question that all of us celebrate evey step along the way. I should certainly hope so, we've all worked so hard, especially our kids. I must have misspoken, or you must have misunderstood my point. When I see progress in my son, I call it progress, not "recovery". When someone uses the word recovery, I assume they mean their kids function at age level, blend in, and can not be picked out of a crowd, are able to think , talk, act, engage, problem solve and handle unpredictable situations same as any other age-matched peer. Isn't that what recovery is supposed to mean? These are the questions someone would ask about a recovered kid, not what their metals look like on paper, or how their latest stool analysis or histamine level was. I was simply pointing out that a 7year old who functions like a 3year old is very much NOT recovered, which doesn't mean he won't get better, or that he hasn't progressed. The point I was trying to make is that sometimes parents don't see the forrest from the trees (is this the saying?) and the indiscriminate use of the "R" word can be very misleading. I've heard of kids proclaimed "nearly recovered" who can't yet talk and have minimal to no receptive language, only because their eye contact is better, or their tantrums are less. Again, I'm not minimizing the importance of these achievements at all, and of course anyone can call it whatever they like, but if we are going to go on anecdotal evidence (right now all we have) , at least let it be accurate.
As for my harboring "residual bitterness"- yes, for autism as a condition, but certainly not for other kids or parents in the same boat as us. Nothing would give me more pleasure than to meet a truly recovered kid (and I know they are out there).

Alex's mom


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