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All about mamafish's DS

post #1 of 17
Thread Starter 
OK, this is mostly a thread about our recent tests for metals and nutrient deficiencies. However, the driving force behind all this testing is to help address his food intolerances - so hopefully it can stay in this forum .

A little background. DS is likely on the autism spectrum, although we don't have a formal diagnosis. He has less social/relational skills than most kids his age, and less language (understood and spoken). He has very strong abilities with patterns and space.

He has always had sleep issues - like getting up for 3-4 hours in the night 2-4 times a week from the time he was about 9 months old. Teeths very hard, still nurses a lot, and didn't really start solids until 18 months old. No "obvious" signs of food intolerances until about 5 months ago, when he suddenly developed a perpetually stuffy nose and itchy butt.

Trial and error and the help of all the mamas here, and we figured out he was sals sensitive, and had trouble digesting a ton of foods, including gluten, casein, complex starches, and sugars. He also had low stomach acid, which pointed at low zinc.

We started supping minerals (esp. zinc, mag, molybdenum, selenium) and I started taking a lot more vitamins to pass to him. We're also using digestive enzymes (for him and me). We've gained a lot of foods back the past 4-6 weeks, so now all we are avoiding are gluten, casein, most fruit, and corn sugar.

First test that was done was the DDI Hair Elements test, here.

This test showed:

1) Very high antimony. Source, likely his bed and PJs (fire retardants), although our dishes are also leaching small amounts. We're making him (and me) a new bed with no fire retardants and washed all PJs/bedding in wash soda to get out the fire retardant.

2) Pretty high arsenic. Probably same sources as the antimony (they are similar and often cross contaminated). We tested our water for this and several other things, it's clean.

3) A little high on lead and cadmium. These are the ones that after research actually worry me the most - they stay in the body the longest, and can have nasty effects at relatively low levels. Source still not obvious - it's not lead, dishes, or any obvious contamination. Both are in food in low levels, and many ASD kids don't detox metals at all well - so it may not be increased exposure, but decreased detox causing these levels to move into the yellow.

4) Very low zinc. We had already started supping by the time I did the hair test, so I'm guessing we'd get very different results now, but nice confirmation of what we saw in terms of low stomach acid suggesting low zinc.

5) High levels of some odd stuff like boron, cobalt, and vanadium. I think these all came from our dishes (high quality stoneware, but many years in the dishwasher were causing the glaze to leach).

6) No evidence of mercury toxicity. It passes all the counting rules, and doesn't show any of the other patterns sometimes seen with mercury toxic hair tests. Not entirely surprising, he's not vaxed and neither was I, but I do have 3 amalgams, and if he isn't mercury toxic, he's probably the only ASD kid in the hair tested universe who isn't .

Next test done was the DDI Urine Toxic Elements profile, here. The main reason we did this test was to have a baseline before we try helping him detox metals, and also to see what appeared to be current exposure. Because of that, I haven't spent a lot of time trying to interpret the test the way I did with the hair test.

However, a few comments, in case it helps anyone else considering the test:

1) High barium and nickel - I'm ignoring these, LOL! Neither was high in his hair test, so either they are new exposures, or he's just doing a good job of getting rid of these on his own. Barium could be because of supping magnesium, that can help chelate barium.

2) High levels of some minerals like copper, zinc, mo, mag. For things like zinc and mo, I think it's because we are supping, and he is getting more than he can absorb right now (which hopefully relates to what he can use). I'm happy to see the high copper - ASD kids often end up high in copper, so I think it is a sign that we are normalizing his zinc levels. Or a sign our water has high copper, we're testing to rule that out.

3) Lots of sulfur being peed. Not sure what form (sulfur, sulfite, sulfate). When I have the brain bandwidth, I need to investigate this more, or find a more detailed test - sulfur/sulfate issues can cause issues with both salicylates and heavy metals detox, and I suspect it's where his detox pathways are most challenged.

So, for the most part, we're ignoring this test in terms of trying to interpret it - it will mostly become useful once we have two of them to compare. This is just baseline. Oh, and it does suggest lead is a current exposure, since lead excretion is high.

Most recent test is the urine porphyrins test from the lab in France, here, and here. I have to say, without the first two tests, this would have been confusing as all hell. Still is confusing. Two very important helps on interpreting it were this (done by the guy who runs the French lab) and this. Here's another article critical of the french pee test, suggesting getting the right reference range for your age is important, I need to learn more about that.

Here's what I get from the test so far (note that there isn't much more to the results than what I posted, very little interpretation):

1) The test has two different reference ranges on the two pages. This is most important for his precoproporphyrin - in one range, he's normal, in the other, he's high. The only thing known to drive preco high is mercury. However, even without that, the test seems to suggest he may have "a little" mercury - a couple of his ratios are just above normal. I've emailed the lab to find out which ratio to use, but we'll move forward assuming we *could* run into mercury. High pentacarboxyporphyrin is also generally a mercury marker, but I'm still reading to see if other things can to this besides mercury.

2) Lead is definitely high, and probably more of a problem than his hair test made obvious (perhaps his levels are building because he doesn't detox well - his hair grows very slowly, so his hair test would tend to reflect older information). One worry I have is that I am his primary lead source - it is common for pg and nursing mamas to dump lead out of their long term bone stores (as your body grabs calcium). And we went dairy free in March, so my calcium intake would have gone down then, which may have increased my blood lead. I've ordered a blood lead test to check. That would make for a complicated situation - DS nurses a LOT, I don't want to wean him, but increasing my calcium with his restrictions will be very tricky.

3) Arsenic is high (uroporphyrin levels) - again, not a surprise from the hair test. And not an enormous worry - we think we know the source (bed), we're addressing it, and arsenic clears from the body fairly quickly.

4) Overall toxic load (copro levels = mercury + lead + arsenic) are high - not a surprise, and this is the number we will be watching to bring down over time. I think this is the best test for identifying quickly if body metals burden is going down (hair tests take a while because new hair has to grow first). Because his copro is elevated more than his preco, it suggests lead is our biggest issue, mercury may be an issue, but not a huge one.
post #2 of 17
I'm subbing because the elements you mention are very familiar from the results I got back today from DS's hair element test. I'm wondering if I should get that second test as well.
post #3 of 17
subbing as well. I ought to run some tests on dd...I've always assumed it isn't metals for her, but i should rule it out. Did you order your tests independently or through a hcp?
post #4 of 17
Thread Starter 
Quote:
Originally Posted by kjbrown92 View Post
I'm subbing because the elements you mention are very familiar from the results I got back today from DS's hair element test. I'm wondering if I should get that second test as well.
I'm a data geek, so I got lots of tests, but honestly, if lead pops, you need to decide if you're going to chelate for it. And that pretty much means DMSA (I think!), which has a wide reach - it pulls a lot of other metals as well. I needed *convincing* lead was a problem, because DS' lead is just a little high, but the French pee test convinces me it is a bigger problem than that. If you *know* you have yellow/red lead, then I think you can just move forward (oh, and figure out if mercury pops as well, doesn't for us, but if you use the Andy Cutler protocol for DMSA, it is safe for mercury as well, in case that shows up).

I mostly posted this to let everyone see what the various tests look like, so you can decide if you want to spend the money on them or not. Really, for me, the last two tests are just baselines for evaluating if what we are doing is working or not - I have a non-verbal child, so it's a bit harder to gauge if his head or tummy hurts, or something like that.

Quote:
Originally Posted by dannic View Post
subbing as well. I ought to run some tests on dd...I've always assumed it isn't metals for her, but i should rule it out. Did you order your tests independently or through a hcp?
I did it myself, the hair elements test through direct labs. Cost about $100. I only did it because I had to cut DS' hair anyhow, but it's given me a very different perspective on why we may have some of these digestive issues... I always figured mercury was probaby not an issue for us (non-vaxed), and it never occurred to me LEAD could be an issue - or arsenic, or antimony, or cadmium - people tend to focus on mercury, but based on what I've read, it's not the only thing you want to know about...
post #5 of 17
How accurate/reliable is hair analysis? I've thought about getting one for DS but some of the stuff I've read (it was rather quick research) said that labs vary widely in their results (and even across hair samples). I also read that there is no way to account for the elements getting into the hair from sources outside the body. It would be interesting to send two samples at the same time to the same lab and see but that would be rather expensive as a test!
post #6 of 17
Subbing, Wanting to do a hair test as well but I to am wondering how accurate they are. Mamafish-great job on trying to figure this because I'm so confused right lol!!!

In the 6th grade a pencil went into my thumb so I've had a little piece of the pencil stuck in my thumb ever since so I wonder how that may be affecting me and DD. Any one know if it's leaching lead????
post #7 of 17
Quote:
Originally Posted by mom61508 View Post
In the 6th grade a pencil went into my thumb so I've had a little piece of the pencil stuck in my thumb ever since so I wonder how that may be affecting me and DD. Any one know if it's leaching lead????
Pencil "lead" is graphite. So no, you're not getting lead leached into you. DH has pencil graphite in his hand too.
post #8 of 17
Thread Starter 
Quote:
Originally Posted by serenitii View Post
How accurate/reliable is hair analysis? I've thought about getting one for DS but some of the stuff I've read (it was rather quick research) said that labs vary widely in their results (and even across hair samples). I also read that there is no way to account for the elements getting into the hair from sources outside the body. It would be interesting to send two samples at the same time to the same lab and see but that would be rather expensive as a test!
Quote:
Originally Posted by mom61508 View Post
Subbing, Wanting to do a hair test as well but I to am wondering how accurate they are. Mamafish-great job on trying to figure this because I'm so confused right lol!!!
One of the reasons I did the pee tests is that I wanted another data source to confirm the hair test results. There isn't anything the tests are in big disagreement about, so I feel like I have a pretty good picture of what's going on, and now I just need to decide how to move forward. However, I think the hair test gave me 90% of what I needed (all the other two tests did is confirm for me that lead is a current exposure, and maybe a little more serious than the hair test indicated, but the hair test is older data, since DS' hair grows really quickly).

I've read the controversies on accuracy, and I think this:

1) it matters how good the technology of the lab is, and DDI has the most current technology - in the 6 lab study that saw such different results, the two labs with the most current technology were in good agreement with each other

2) NO lab test is 100% accurate - blood tests are pretty well known for false positives/negatives, allergy testing can be hit or miss - so it's just one source of information. Add in other tests if you want, knowledge about your family history and exposures, mama intuition... But for me, the test got me looking at lead, which I never would have thought of before, and for that it was $100 very well spent IMO.
post #9 of 17
whew!
Quote:
Originally Posted by kjbrown92 View Post
Pencil "lead" is graphite. So no, you're not getting lead leached into you. DH has pencil graphite in his hand too.
post #10 of 17
Thread Starter 
An update.

We started on zeolite 3 weeks ago. I've read lots of contradictory opinions on whether it actually chelates metals or not, but everyone seems to agree it's very safe, and a good "mopper". I wanted to give it a try before moving on to DMSA. Unlike a regular chelator, it's supposed to be safe to take all the time, you don't need to do on/off cycles.

So I started very slowly, one drop a day, and worked up to 3 drops, 3x a day. No noticeable daytime reactions at first, but we wired him with methylation supps during that time, so hard to tell. And I guess because I didn't really expect it to have a high chance of working, I think I was a dork and missed some signs:

1) For the last 10 days, he's been buzzed. Not nearly as buzzed as with the methyl B12, but sort of "buzzed-lite". I've been playing with supps and salicylates trying to figure out what I was doing to buzz him.

2) For the last 5 nights, sleep has SUCKED. Up for hours in the middle of the night, thrashing and awake every 15 minutes kind of awful. Figured that was teething, he's just finishing his bottom 2 year molars.

3) He's been chewing on his shirt and other stims (he's not normally a stimmy kid).

So yesterday, I finally went - duh, I wonder if it's the zeolite? Or more precisely, if the zeolite is actually pulling metals, does this look like a detox reaction?

I went and read on the zeolite and chelating yahoo groups, and sure enough - pretty typical reactions to zeolite, and also pretty typical detox reactions.

I'm a fan of the Andy Cutler chelating protocol (every 3-4 hours so that levels of chelators and metals in their blood don't swing around wildly), but I hadn't applied that thinking to zeolite - I wasn't dosing that frequently, wasn't dosing at night, and have been ramping up the dose over 3 weeks, no breaks.

So today we are starting a break!! And today is exactly what you would have expected reading about the first day off a DMSA protocol - a little whiny/fussy, wanted to nurse alot, still stimmy - oh, and the rash on his butt that I noticed yesterday but managed to avoid putting together with all this. All these things would be consistent with metals settling back down after a pause in chelating.

So - seriously, the zeolite might be pulling metals? Either that or it's affecting him in some other way. Next steps, take a few days off and see if the buzz and sleep issues clear up. And wait for the pee test kit coming in the mail. Once he's back to "normal", we'll try a round of zeolite treating it as a proper chelator, on the Cutler protocol, and do a pee test to see if it's really pulling metals. But I think it might be!
post #11 of 17
It sounds like it could be. DS has had chewy/mouthy reactions after a couple things, he needed more zinc, he's always been borderline and the couple stressful things put him over the edge into visible deficiency.

For us, extra vitamin C (can you get any in your son?) and modifilan really helped, but again, modifilan isn't the easiest to get a kid to take. VitC seems easier.

Hey, you may appreciate this. Don't know if you've lurked on the Sodium Ascorbate thread, did you see my oops with the calcium ascorbate?

Does anyone in the zeolite groups have advice about dosing schedules?
post #12 of 17
Thread Starter 
Quote:
Originally Posted by TanyaLopez View Post
It sounds like it could be. DS has had chewy/mouthy reactions after a couple things, he needed more zinc, he's always been borderline and the couple stressful things put him over the edge into visible deficiency.

For us, extra vitamin C (can you get any in your son?) and modifilan really helped, but again, modifilan isn't the easiest to get a kid to take. VitC seems easier.

Hey, you may appreciate this. Don't know if you've lurked on the Sodium Ascorbate thread, did you see my oops with the calcium ascorbate?

Does anyone in the zeolite groups have advice about dosing schedules?
That's interesting on the zinc. We're finally getting his zinc levels improving, so I don't want to trash those. I've been spacing the zeolite and zinc, but I'll add more. I have some zinc sulfate cream, that might bypass so much interaction with the zeolite.

I get 500mg of C in him a day, and that takes some serious creativity. If he keeps swallowing baby capsules though, I could load those with ascorbic acid powder, and that would up his C quite a bit. I seriously doubt the modifilan would go in him - I thought I was going to be using zeolite to mop up after the DMSA, I didn't really expect a ton of mobilization from the zeolite.

People in the zeolite groups seem to have bought into the "it's harmless, take it any old way you like" approach. Some dose it along with ALA or DMSA, but most people notice it causes sleep disturbance so they load it all in the morning, stuff like that (which if I understand Cutler right, is a very bad idea if it really does mobilize metals for some people, you'd just be swinging around like crazy then).

We'll see what the pee test says, but I will be giving it a lot more respect next time I use it - especially if it is pulling metals and stressing his zinc levels...

And I'll have to go see what you did with the calcium ascorbate .
post #13 of 17
No need to go searching, I'll throw my idiocy out for all to see.

Ran out of SA, had re-ordered but it took forever to ship, so since I couldn't find SA locally, bought calcium ascorbate. Supposedly calcium ascorbate is okay to use in a pinch, but long-term the extra calcium can really mess some things up (not sure on details here).

Um, 4 grams of vitamin C in calcium ascorbate has 470mg of calcium. Right now I'm giving DS about 16 g/day vitC, so that adds up to a helluva lot of calcium, WAY the heck too much. Kid has calcium regulation problems, not huge, but I saw sleep/hyperactivity issues this summer when he got out into the sun for long stretches (I'm thinking 5000-8000 IU of D created, at least according to the neat little calculator I found). So, I KNEW calcium regulation was an issue, and for several days gave the kid a TON of calcium. Ugh. Thought we were totally losing naps, I was just confused, and nothing got done last week because I didn't have naptime! I love naptime.

So, that's it. Just don't be me.

FWIW, I'd gotten the impression that zeolite does mobilize. Not like ALA, but somewhat, and it sounds like it does from your account. I'd always figured it more on the mobilizer end than the sopping up end, I guess it'll take experimentation to see where it comes out for you. It doesn't seem as clear as some of the other things out there. But even if it just sops, it seems like you'd need to dose it with the ALA or DMSA, because they continually pull new metals.

Not sure if you've ever looked into acerola berries, I'm not clear on how they're used (smoothies? I assume they're somewhat tart?) and I've never tried to use a real vitamin C (food source) for this stuff. But maybe that would help get more into him?
post #14 of 17
Thread Starter 
Oh man. If I did that, DS wouldn't poop for 3 years, LOL! How does vit D relate to calcium regulation - we've been trying to get lots of mid-day sun lately...

Based on what I read, zeolite has really positive effects in about 1/5 of people who try it (based on docs who use it for lots of ASD kids in their practices). They think it has beneficial effects on viral load and gut bacteria, so sometimes the positive impact isn't from moving metals. Most people using zeolite don't do any testing to confirm metals movement. The few DAN docs who use it split between those who think it sometimes pulls metals, and those who don't. There are some anecdotal cases, like Moneca's, but in most cases, people are taking a lot of other supps and sometimes other chelators too, so it's really hard to know. I figured it was worth a try.

It apparently clears the body in 4-7 hours (it doesn't have a half life like DMSA because it doesn't get metabolized), so I think dosing every 4 hours for a few days seems like a reasonable thing to try.

Acerola berries are out because of sals issues, that's my main problem with most vitamin C supps - they're one of the last things that can still trigger a sals reaction for DS, especially in the quantities I want him to have. He also nurses a lot, and I'm doing lots of C, hoping to pass on C rich milk! But I think I need to work on more into him directly... I'm guessing I now know the flavors of his detox reactions, and lack of sleep ain't pretty...
post #15 of 17
Thread Starter 
A little more data. Got my lead blood test back, and I don't have any detectable levels (normal is 0-10, and I have <1, 1 is the detection limit). So clearly I'm not the source of DS' low level ongoing lead exposure. I thought I might be, lead often leaches from bones of pg and bfing mamas.

And got DD's hair test results. She's 5, and my firstborn, so I figured if I was dumping stuff into my babies, she's have gotten the brunt of it. She also shares an environment with DD. Her test is very normal, and no signs of coming anywhere near the mercury counting rules - which means that DS probably really doesn't have mercury issues, it wasn't just a flukey test for him. Three metals in the low yellow, but none of the serious ones (and I think 2 of the 3 are from swimming pool contamination). About the only thing that pops on her test is that she's deficient in Mo, so we can supp that. She can also probably use a little more calcium and zinc.

I'll look her test over a little more, but what it tells me is that we live in an environment where a healthy, well detoxing child isn't building metals loads. Which goes back to DS being very sensitive and not detoxing metals well at all. So I need to figure out how to get his metals load down, and then how do we long term support his detox pathways?
post #16 of 17
Good information all. Thanks for keeping us updated on this. I'm glad that you and your daughter are safe! Yes, lets figure out how to support pathways long term...
post #17 of 17
Thread Starter 
Got back DS' second urine toxic metals/elements test today. The first one was from about 6 weeks ago. He was on minerals, and I think some extra mag, but nothing else. 6 weeks ago I started him on milk thistle, vit C, and zeolite. More about the zeolite story upthread, but taking it constantly was very bad, lots of reactions.

For the last two weeks, I've done two rounds of chelation, using Andy Cutler-ish protocol, but with zeolite as the chelator. First round I did 3 drops every 4 hours, and after 2.5 days, he wasn't pooping, so we stopped. The second pee test was from morning 2 of that first round, I wanted to see if the zeolite was pulling any metals, or just messing with him in general!

This last round I backed off to 2 drops of zeolite every 4 hours (yes, through the night as well). He's tolerated that a lot better - we did 3 days, and then today I have been decreasing it slowly (1 drop this morning, then 1/2 drop) and I'm not seeing the whiny unhappy day I saw coming off it last time. I'm hoping it's helping mop up a bit.

What I was hoping to see in this second pee test was higher levels of toxic metals being pulled. Pretty much all of them are lower - except antimony, his worst toxic load (98th percentile bad on his hair test). On his first pee test, before chelating, antimony in his pee was 1.49 ug/g creatine. The second pee test, during zeolite chelation, it was 16.1!! That's huge, the reference range for normal is <0.149 (so he was high before, but super high now). We've worked to reduce his antimony exposure in the last few weeks as well, so it must be the zeolite pulling antimony. And it explains why that round caused low mag symptoms, he would have had HUGE amounts of antimony in his blood, and antimony messes with magnesium utilization.

The other metals being lower than before is a bit weird, but his creatine concentration was twice as high in the second test. So there was actually more metals in his pee, just not more relative to the creatine (e.g. his pee this time was more concentrated). So he may really be dumping more of some of the other metals as well, but the pee concentration messes with the data. It was first morning pee both times. Regardless though, we are definitely pulling antimony, and that is a good thing! Also, DMSA (more traditional chelator) apparently doesn't pull antimony, so it's good to have something that will help get that out.

The other interesting thing is that he is peeing out less minerals, at least relative to his pee concentration. Maybe he's using them a little better? His mineral pee concentrations look more normal, a lot more of them are in the reference range.

Anyhow, we have a direction for the next little while, then. Keep working on his zinc and mag levels, and keep doing zeolite rounds at the current 2 drops level.
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