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Moms dealing with elevated lead levels - Page 27

post #521 of 624
Some autistic children can eat casein and gluten again once the metals have been chelated out of their bodies, too; it's the metals (or other things like bacteria or viruses or yeast) creating the intolerance. But eliminating the casein and gluten does a lot to improve their everyday behavior. Casein and gluten proteins create an opiate-like effect in the bodies of affected children, and they literally are addicted to it.

I was really dreading eliminating casein and gluten in my family but I am sooo glad we did it. I feel awesome and I'm ten pounds lighter (and not from eating any less), my daughter went from a cranky miserable baby to a laughing happy kid, and my son's constantly runny nose got sooo much better.

Neither of my kids are autistic or ADHD, either, by the way; I think this stuff affects way more of us than most people realize.
post #522 of 624
Oh and I wanted to add that anyone who gets a hair test for heavy metals done also go check out the Autism-Mercury Yahoo! group; the parents there are very knowledgeable and can lead you through the interpretation of the results better than any doctor I've found.

They also discuss chelation a lot, which isn't something I've seen mentioned on this thread (although I admit I probably haven't read all the posts!); if your child had elevated lead levels then that lead is still there stored in the bones even if they are no longer being exposed. They are following a very low and slow style protocol that is the safest one that I have found so far.

BTW they also strongly advise against cilantro as a chelator, which I noticed that some people here use from glancing at old threads. From what I understand it can be dangerous, mostly because noone has discovered what dosage is appropriate; it has the potential to set loose too much metal in your body, so much that your body can't excrete it fast enough and so it ends up getting redistributed in your body all over again. This is the reason why chelation in general is considered potentially worse than being toxic to begin with.

I hope I don't offend anyone with this; I'm just learning about all of this myself and I really found this list helpful.
post #523 of 624
Quote:
Originally Posted by MamaMamaMama! View Post
r.

BTW they also strongly advise against cilantro as a chelator, which I noticed that some people here use from glancing at old threads. From what I understand it can be dangerous, mostly because noone has discovered what dosage is appropriate; it has the potential to set loose too much metal in your body, so much that your body can't excrete it fast enough and so it ends up getting redistributed in your body all over again. This is the reason why chelation in general is considered potentially worse than being toxic to begin with.

I hope I don't offend anyone with this; I'm just learning about all of this myself and I really found this list helpful.

What if cilantro is just a part of your regular diet? It just happens to be something that is regularly added to foods that we eat
post #524 of 624
Thread Starter 
Quote:
Originally Posted by jrayn View Post
I suspect that she will be diagnosed with ADHD
Oh, I am so sorry to hear this.
Some days I look at my little DD, and I wonder what all that lead did to her.
She is of course down to zero now, but it took a long time.
It is so hard to tell what is normal kid behavior and what is abnormal. I will never know what her IQ could have been.

Hugs to all of you.
post #525 of 624
I honestly don't know. There haven't been any studies that I know of that actually discovered the correct dosage. It might still be dangerous, since even just a little bit of a chelator could be a big deal to a small child, and cilantro has been proven to be a powerful chelator.

I know with ALA, another chelator used mainly for mercury and arsenic, that people have been hurt by its being an ingredient in some multi vitamins, especially if they had dental amalgams. Dental amalgams are relatively stable in your teeth (although they do still leak mercury) but if you take a chelator then the metals get destabilized and you pretty much take the metal out of the amalgam and dump it into your organs and brain
post #526 of 624
Quote:
Originally Posted by MamaMamaMama! View Post
I honestly don't know. There haven't been any studies that I know of that actually discovered the correct dosage. It might still be dangerous, since even just a little bit of a chelator could be a big deal to a small child, and cilantro has been proven to be a powerful chelator.

I know with ALA, another chelator used mainly for mercury and arsenic, that people have been hurt by its being an ingredient in some multi vitamins, especially if they had dental amalgams. Dental amalgams are relatively stable in your teeth (although they do still leak mercury) but if you take a chelator then the metals get destabilized and you pretty much take the metal out of the amalgam and dump it into your organs and brain
Excuse my ignorance, but this has never been totally clear to me--when you talk about "chelators," you're speaking of the natural chelators that are self-administered or done through a naturopath, yes? My daughter had chelation for her lead levels, but it was chemical chelation through the hospital MD. She was on an oral dose of Chemet for 19 days.
post #527 of 624
When I say chelators I am talking about anything that gets the metals out of the body. Natural or synthetic, the dangers are the same: stirring up more metals than the body can handle. Some chelators are good for you otherwise (cilantro, for example, or Alpha Lipoic Acid--ALA); others are hard on the body (DMSA, another lead chelator, for example, which is hard on the liver).

I'm not familiar with Chemet, but from what I understand this kind of chelation removes lead from the blood only--this is for current or very recent exposure, to get the blood levels down.

Lead from past exposure is held in the bones, in place of calcium. It takes a long time--years, sometimes, depending on exposure--of chelating to get the lead in your bones out. Unfortunately it is with pregnancy or breastfeeding or menopause that lead leaks out of your bones--that's the times when a woman's body would otherwise be giving up calcium, to a growing fetus or to a nursing baby. Instead of providing calcium, the body provides lead. So that makes lead exposure doubly dangerous for girls/women.
post #528 of 624
That makes sense.

Her chelation was the response to acute poisoning (level of 47) that had happened relatively recently, so it makes sense that the protocol was what they chose--to get her blood levels down as quickly as possible.

Is there any way of knowing how much lead was stored in her bones?
post #529 of 624
From what I understand the only way is to take a chelator and watch for a reaction. People without metals in their bodies have no reaction whatsoever to the chelators; those with metals have physical symptoms.
post #530 of 624
Last month, we did a finger prick lead test on both of my boys- age 3 and 10mons. The 3 yr old's test came back at 4 and the then 9 mon old came back 19. I did the arm draw yesterday and the Dr called today telling me his level was 31!!!
We are renting an appt in a VERY old house, but will be moving Aug 1st.
My mom and I just tested the whole house and it looks like the lead is only in the window areas- which makes sense because the baby loves to climb and play around them.
We blocked off that area and I have decided to only be in the house for meals and bedtime. Is that enough? Should we find a sublet until we can move to our new place?
I am really scared. My son is SO smart and advanced and it breaks my heart to think he may be brain damaged! He shows no signs of anything being wrong. His iron levels are perfect(13.5), I plan on giving him more calcium rich foods.What else can I do?
And is there a chance he can get through this without any lasting damage being done?
I need reassurance.
post #531 of 624
Bumping
post #532 of 624
I'm so sorry to hear about your son's lead levels. How scary . Have you considered a calcium supplement for the next few months? Lead takes the place of calcium in your bones; they fight for the same place, so to say. It seems to me that having more than enough calcium around might ensure that less lead gets into the bones. I'm no expert, though.

All that I have been reading about has to do with chelation; I know that DMSA is approved for chelation of lead and that it's only safe to take in very very low doses, much lower than standard DAN! doctors will prescribe it. It will get the lead out of the blood and organs, though. Again the autism-mercury group on Yahoo! will have more answers than I do; if you join you can go to http://onibasu.com/ and do a search under "lead" or "blood lead levels" and see what comes up. I do know that lead stays in the blood for about three months; after that point it's absorbed into the body and even if you chelate it takes a long time to get it out. The more you can do now, the better.

Make sure you do as much wet wiping as you possibly can if you stay in the house, and get rid of any throw rugs that were underneath the windows. Vacuum the furniture, too--get as much of the dust out of the house as you can.
post #533 of 624
yeah, not too happy to be joining this tribe.

my daughter was tested via finger-prick at her 9 month visit. level comes back at 14. decided to retest with a venous draw. this afternoon (3 weeks later!) our dr. called us to say that it came back at 17. i had hoped it would be LOWER, not higher. i feel like crying.

after the finger-prick, we swabbed a bunch of things in our house with the home tests, and the only thing that came up positive was our refrigerator. a very old refrigerator, possibly from the late 60's or early 70's. so we got a new fridge. oh and a new vaccuum with a hepa filter -- i had used our old vaccuum to clean up after some windows were replaced last summer (while i was pg) and it had probably been blowing lead dust all over the house for a year or more.

we also got a box of tsp, but i feel overwhelmed when i think about wiping down every surface in our house. when i feel overwhelmed, i get paralyzed, so i haven't started cleaning with it yet. i think i have been clinging to the idea that the venous draw would reveal a lower level, that the finger-prick was a false positive, that our fridge might be the only source and now it's gone.

*sigh* i am going to request a home inspection from our state's health department. our house was built in 1942, but there is no peeling paint anywhere.

do i clean with tsp before the inspection? would that negate the results of the inspection?
post #534 of 624
Quote:
What if cilantro is just a part of your regular diet? It just happens to be something that is regularly added to foods that we eat
I know this is an old question, but my understanding is that, unless you are very clear on what you're doing, mercury toxic people are at risk of redistributing mercury even with food levels of cilantro. I know very toxic people will feel very ill even eating small amounts of cooked cilantro, and I think I had lower level mood issues (mild depression, not dramatic) before I realized I needed to avoid it completely.

Back on topic now...
post #535 of 624
Quote:
Originally Posted by fancyoats View Post
yeah, not too happy to be joining this tribe.

my daughter was tested via finger-prick at her 9 month visit. level comes back at 14. decided to retest with a venous draw. this afternoon (3 weeks later!) our dr. called us to say that it came back at 17. i had hoped it would be LOWER, not higher. i feel like crying.

after the finger-prick, we swabbed a bunch of things in our house with the home tests, and the only thing that came up positive was our refrigerator. a very old refrigerator, possibly from the late 60's or early 70's. so we got a new fridge. oh and a new vaccuum with a hepa filter -- i had used our old vaccuum to clean up after some windows were replaced last summer (while i was pg) and it had probably been blowing lead dust all over the house for a year or more.

we also got a box of tsp, but i feel overwhelmed when i think about wiping down every surface in our house. when i feel overwhelmed, i get paralyzed, so i haven't started cleaning with it yet. i think i have been clinging to the idea that the venous draw would reveal a lower level, that the finger-prick was a false positive, that our fridge might be the only source and now it's gone.

*sigh* i am going to request a home inspection from our state's health department. our house was built in 1942, but there is no peeling paint anywhere.

do i clean with tsp before the inspection? would that negate the results of the inspection?

I don't have an answer to your questions but I wanted to make sure you tested your bathtub too. Most health departments don't do it and in older houses it is very likely to leach lead into the water.

I hope that the blood levels show an improvement and you will be past this soon.
post #536 of 624
There is a test for lead lines in the bones, its an imaging test (I recall that it's a kind of x ray but it was awhile ago that I read about it.) We didn't get it done, figuring that chronic exposure (ours) would mean definite lead lines.

Don't clean with TSP before your inspection. We had to do a major cleaning before ours, since we did not have the money for a hotel, and the baby had to be in our house. It skewed the results somewhat (and lessened the likelihood of a successful lawsuit). But we HAD to clean, the state inspector was taking so long to get there.

The onibasu searches I did a few years ago didn't to lead to much about lead poisoning, better to learn about mercury poisoning from the autism-mercury list and extrapolate. However, much of the dialogue on that list is anti-alternative medicine, as is Andy Cutler, just so you know. Which does not mean there is not knowledge there, just not enlightenment
post #537 of 624
I don't have an answer to your questions but I wanted to make sure you tested your bathtub too. Most health departments don't do it and in older houses it is very likely to leach lead into the water.



our bathtub is newer, plastic with whirlpool jets, not one of those old porcelain enamel ones. but we do have copper pipes, so it's definitely possible that it's in the water. we are brita-filtering, and letting the water run for a while to flush the pipes.

this morning i called the health department and asked to schedule a home inspection....waiting to hear back.
post #538 of 624
Quote:
Originally Posted by fancyoats View Post
[B]

this morning i called the health department and asked to schedule a home inspection....waiting to hear back.
I am not telling you what to do... But I wanted to warn you if you have an inspection, and lead turns up, and down the road you want to sell..... You will have to disclose to all potential buyers that lead was found in the house and your children had elevated lead levels.

My dd had an elevated LL. We did not have the inspection for this reason. We DID find the cause with the DIY kits (an old shed in the back yard had chipped paint and we were dragging it inside on our shoes and she was ingesting it, she was a very oral baby!) We fixed the problem, and her level is now a 0. If we had an inspection, we would have had to disclose that info which is no longer an issue when we sell. That turns a lot of people off to buying a house. It is just something to think about. If it is something like an old porcelin tub, that could be an easy fix, a new plastic tub that goes over the old one. Check your window sills, any obvious paint, flower pots, etc.
post #539 of 624
Quote:
Originally Posted by GooeyRN View Post
I am not telling you what to do... But I wanted to warn you if you have an inspection, and lead turns up, and down the road you want to sell..... You will have to disclose to all potential buyers that lead was found in the house and your children had elevated lead levels.

My dd had an elevated LL. We did not have the inspection for this reason. We DID find the cause with the DIY kits (an old shed in the back yard had chipped paint and we were dragging it inside on our shoes and she was ingesting it, she was a very oral baby!) We fixed the problem, and her level is now a 0. If we had an inspection, we would have had to disclose that info which is no longer an issue when we sell. That turns a lot of people off to buying a house. It is just something to think about. If it is something like an old porcelin tub, that could be an easy fix, a new plastic tub that goes over the old one. Check your window sills, any obvious paint, flower pots, etc.
i appreciate you perspective. we did swab all the obvious places -- windowsill, doorjambs, threshholds, etc. if you read back to my post upthread, you will see that the only thing that the swabs turned up was our super-old refrigerator. we got rid of the fridge. we have all new windows, there is no peeling paint.

2 years ago when we bought the house, we had the option to have a lead inspection done, but we signed a waiver because we saw the house had all new windows and there was clearly no peeling paint. i wasn't aware of the fact that there could be other lead sources besides windows. silly me, i didn't think to ask "hey, does that old refrigerator have lead paint?" i had no idea. i almost wish we had gotten the inspection when we bought the house. lead is a big issue in our state (rhode island actually brought a class-action lawsuit against manufacturers of lead paint and won a huge settlement....a settlement that was then overturned, but it was a symbolic victory nonetheless) almost all the buildings/homes are older and have lead somewhere in them. it's practically a given.

if the home inspection doesn't find any lead (i.e, because we have removed the source -- the fridge) would we have to disclose that our kid had elevated lead levels? i'm guessing no because in that instance, it's possible that she could have been exposed elsewhere.

blah! i hate lead.
post #540 of 624
My dd had an elevated LL. We did not have the inspection for this reason. We DID find the cause with the DIY kits (an old shed in the back yard had chipped paint and we were dragging it inside on our shoes and she was ingesting it, she was a very oral baby!) We fixed the problem, and her level is now a 0. If we had an inspection, we would have had to disclose that info which is no longer an issue when we sell. That turns a lot of people off to buying a house. It is just something to think about. If it is something like an old porcelin tub, that could be an easy fix, a new plastic tub that goes over the old one. Check your window sills, any obvious paint, flower pots, etc.

If my child had levels that high, I would not let this issue hinder a home inspection. The most important thing is to find the source (s) and get them taken care of. The fridge may or may not be the only source... and the DIY test kits are not the most reliable way to test.
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