Moms dealing with elevated lead levels - Page 23

[sandygirl]

ugh - my HD is giving me issues because of DD's lead levels -

what are my rights here?

They are telling me that DD has to move out, that I have to stop nursing her, we need to demolish our home, etc. They even have the year our home was built wrong! They have not come in to test or anything - and with their scaremongering I'm not inclined to let them!

I'm hoping someone here can tell me my rights in reguards to this.

[Dido]

Sandygirl, I don't know your legal rights here, I'm sorry, although I'm sure they can't make you wean. I've never heard of a house getting demolished in these circumstances - rather, lead abatement is performed: repainting, replacing windows, adding topsoil to lawns, etc. Much of this may well be paid for by the HD, if you let them in the door, of course. I actually agree with the suggestion to move out - not necessarily permanently, but if you have a nearby relative that you and your daughter could stay with while the lead source gets determined, that is ideal.

I think you should focus on protecting your daughter and less on a wrangle with the HD. I know you feel disrespected and jerked around, but that's not really as important as your daughter's developing brain. Let them in for an inspection - at least then you have some data to go on and there will be fewer wild suggestions being tossed around. If you can afford it and you really don't trust the HD, then get your own inspection done so you have two sets of data. You can find a list of certified inspectors at the EPA website.

[hannahmama]

hearing your stories, i feel thankful, but still concerned, about my dd 12mo lead test result of 6. i'd like to see it below 3, as would our wonderful dr. i'm going to try this cilantro pesto idea. also, anyone know solutions for lead in the water? we are filtering now, and i've heard it's good to let it run for a while, but that seems such a waste... ugh. does anyone know what the laws are in ma for landlords dealing with the lead? it would be great if we could get a household filter system, but i know that can be expensive, so i'm hoping it would be the landlord's expense. best of luck to all of you getting the lead out of your babies. it makes me crazy that we should even have to worry about this for our children.

[harmonymama]

Yes, my son's doc is a DAN! doc. I don't know if she would recommend chelation for a level of 4 or not, but she seemed to be preparing me for the idea, and said 4 is high. We sent a urine sample to France that she said is the definitive lead test. But my son also had a vaccine reaction, so I think she is trying to look at his total heavy metal exposure over the course of his lifetime not just right now (b/c blood lead levels only show what had entered body in past 30 days). Anyway I'm not sure about any of this, but trying to educate myself more before our next appointment. Anyone have experience with DAN! doctors or these types of tests/treatments? Advice?

[Dido]

Hannahmama - yes, let the water run for a couple of minutes in the morning. I know it seems wasteful but your kid's health takes priority, yk? Check your local HD to ask about water testing. In NY you can send your water away to get tested for free - see if there's a similar program in MA. Your landlord is not required to do anything about lead in the water unless there's a confirmed hazardous level. So check the water and then work from there.

Harmonymama - I think you are wrong about blood lead levels only showing the last 30 days of exposure. I can't search out links right now, but if you only have that information from your DAN doctor, I'd find another source to double-check.

Blood tests are "definitive" in the sense that all the information we have about the negative cognitive impacts of lead exposure is based on studying blood lead levels. Those are the metrics that researchers are looking at. You might try asking your DAN doc for further information about her supposedly "definitive" test, such as peer-reviewed studies establishing its significance, and why it is that the only lab capable of performing it is overseas, and whether this lab does business with anyone other than the alternative medical community. You might also ask her for any peer-reviewed studies showing the positive impact of chelation on children with a lead level of 4 (this is a trick question; there are none). Please get a second opinion before starting on some dangerous and expensive course of therapy such as chelation and consider that DAN docs can have an agenda of their own.

[leila1213]

Originally Posted by harmonymama

Yes, my son's doc is a DAN! doc. I don't know if she would recommend chelation for a level of 4 or not, but she seemed to be preparing me for the idea, and said 4 is high. We sent a urine sample to France that she said is the definitive lead test. But my son also had a vaccine reaction, so I think she is trying to look at his total heavy metal exposure over the course of his lifetime not just right now (b/c blood lead levels only show what had entered body in past 30 days). Anyway I'm not sure about any of this, but trying to educate myself more before our next appointment. Anyone have experience with DAN! doctors or these types of tests/treatments? Advice?

My holistic practitioner said she just got back from a conference where they spoke of urine testing as the definitive test for metals. I also thought it was pretty well known that blood lead levels are only indicative of recent metal exposure, not lifetime build-up. Although, it is true that all the research I have seen does refer to BLL on symptoms and effects of lead. So, I don't have any answers for you, but just wanted to back up some of the info you're getting from the DAN.

[Dido]

Originally Posted by leila1213

My holistic practitioner said she just got back from a conference where they spoke of urine testing as the definitive test for metals. I also thought it was pretty well known that blood lead levels are only indicative of recent metal exposure, not lifetime build-up.

Yes, that is well known. But indicative of the past few months of exposure, not the past 30 days, which is what harmonymama's doctor told her.

As for urine testing: this is not the definitive test for how much lead is present in the body. Rather, this shows how much lead is being excreted. Lead is tested in urine during a course of chelation, to determine how much lead is being excreted as a result of the therapy. So if a doctor is recommending urine testing, that doctor is planning to recommend chelation. I would bet that your holistic practitioner heard urine testing discussed in the context of chelation.

[BeingMe]

I have the hair test to do on my DD, but I was wondering how much it generally takes. She really doesn't have much hair and I wasd wondering if I should wait till after Thanksgiving to cut off the sample.

[leila1213]

She also recommend that I load up on cilantro, so that DD would get it through breastmilk. I told her about the concerns I have read about here and on the Autism-Mercury board but she didn't think there was any reason it would be dangerous to chelate with cilantro.

She also wants to administer homeopathic doses of lead, cadmium and the other metals that she is toxic from. Has anyone ever heard of this?

[Dido]

Leila, by all means give your LO cilantro; the danger posed by chelation comes from pharmaceutical chelating agents not a diet high in greens (BTW I am certainly not against chelation in all cases of lead poisoning, but it is only warranted in cases of particularly high BLL). However, think of the cilantro as something you are trying in addition to rather than instead of the proven dietary methods of limiting lead absorption - i.e. feeding high-iron and high-calcium foods or providing supplements.

Homeopathic doses of anything aren't likely to do harm, but there is certainly no benefit to taking in even tiny doses of lead.

[chioma]

hi mommas,

we had the city codes officer come into our house on wednesday, our landlord came shortly after the codes officer arrived so he could find out what he needed to do about the house. my dd tested with a level of 23, ok, we are freaking out about the potential long term damage to her little brain. can you believe that this landlord had the nerve to sit in MY living room and start to cry because of how much money it will cost him to fix HIS OWN property so that it is liveable? I had to walk outside and stay there, cuz i was seriously losing my mind. we are fighting with him about refunding us some rent money to help us defray the cost of moving, finding another place, etc. the HD has said we don't HAVE to move, but our dd should not be here while the repairs are taking place, and since this guy wants to do the bare minimum and we don't have a place we can stick our dd while the work is being done...she is 13 months old, and still breastfeeding, if she goes we all go. the landlord called on friday and gave us an offer for what works out to be almost all the rent money we have paid him (we have only lived here since May), but he wanted us to sign a release that we would never come after him for more in the future. he is hopeless...of course we told him no. gotta run, more later

[Dido]

Chioma - I'm so sorry. Can you talk to a lawyer? Your instincts are right on, do not sign anything your landlord gives you and do not release him from any responsibility. Is it possible to arrange for the HD to deal with the landlord? In NY when it comes to lead poisoning, the landlord is going to have to deal with the city and it's not just up to the individual tenant to negotiate. If the city is expecting you to handle the whole thing, I really think a lawyer who specializes in this kind of situation could be a huge help. My understanding of landlord-tenant law is that if the property is not liveable the landlord must pay for you to live elsewhere, whether that means a motel or another rental property.

Document everything - if your daughter ends up with delays, you've got a legal case here.

[harmonymama]

It was actually a public health nurse that tested my son for lead that told me blood lead levels show only what has entered the bloodstream in the past 30 days. (This was not the DAN doctor).

What is the agenda of DAN doctors?

Does anyone have a sense of the efficacy of hair vs. urine testing, or even of testing his baby hair?

Can anyone please refer me to some good unbiased site that look at the risks and benefits of chelation therapy?



I keep asking this and not coming up with anything. I'm really trying to inform myself before my son's next doctor appointment. Thanks in advance.

[leila1213]

Hi harmonymama,

Are you subscribed to the Autism-Mercury Yahoo group?? They are extremely knowledgeable about all aspects of chelation, testing, DAN doctors, etc. Can't say they are unbiased, but they are certainly an experienced and diverse group of people with a LOT of information to share.

[Dido]

Originally Posted by harmonymama

It was actually a public health nurse that tested my son for lead that told me blood lead levels show only what has entered the bloodstream in the past 30 days. (This was not the DAN doctor).

What is the agenda of DAN doctors?

Does anyone have a sense of the efficacy of hair vs. urine testing, or even of testing his baby hair?

Can anyone please refer me to some good unbiased site that look at the risks and benefits of chelation therapy?

Sorry to blame your doc then; nurses aren't infallible either!

Regarding agendas, DAN doctors generally attribute autism and a range of behavioral irregularities to vaccine reactions and heavy metal toxicity. These conclusions are controversial to say the least. They tend to believe that biomedical interventions "cure" such conditions and are particularly fond of recommending chelation as a magic bullet. For a DAN doctor to find chelation an appropriate remedy for a BLL of 4 is testament to ideology overcoming common sense, and I would consider such a recommendation to be agenda-driven. Obviously DAN doctors are very popular on MDC and quite honestly I don't wish to divert the conversation to a wrangle over DAN and vaccines. As the mainstream medical community recognizes lead exposure and poisoning as a severe problem, I personally see no particular need to seek alternative practitioners given the level of attention, seriousness, and respect given this issue by mainstream medicine.

Neither hair nor urine testing is particularly accurate or helpful in determining the level of lead in the body.

Chelation is controversial. You're not going to find much that you can't point a finger at for being biased one way or another. I hope that the articles below can at least establish for you that chelation is the protocol for lead poisoning only when blood lead levels are much, much higher than your son's (generally a BLL of 45 or over). I'm not interested in scaring people, so I'm not going into this here, but if you want to know the worst of what chelation can do, you can google chelation and death. Bottom line, chelation is something you only want to do when necessary, and then under the care of a reputable board-certified physician.

From the New England Journal of Medicine:

http://content.nejm.org/cgi/content/full/344/19/1421

This article appeared in the Harvard Reviews of Pharmacoepidemiology:

http://www.hsph.harvard.edu/Organiza.../chelation.htm

The AAP policy statement as printed in the journal Pediatrics:

http://aappolicy.aappublications.org...ics;116/4/1036

[BeingMe]

So blood is better than hair???????? Ohhh I am soooo confused. Which one should I do????????????:

[leila1213]

Originally Posted by shannyshan

So blood is better than hair???????? Ohhh I am soooo confused. Which one should I do????????????:

Have you ever tried to have blood drawn? My daughter made THAT decision FOR me.

[Dido]

Originally Posted by shannyshan

So blood is better than hair???????? Ohhh I am soooo confused. Which one should I do????????????:

Blood draw. Venous, not fingerprick. There is just no controversy about what test is most accurate and useful.

[harmonymama]

From my understanding, blood is the most accurate test of current/recent lead exposure. Hair and/or urine can measure (though imperfectly) lead stored from past exposure.

[counterGOPI]

hey mamas!! so i dont know if you remember or not but my dd had high lead levels a year ago and we did eveything we could, even hired a lead inspector and he found nothing in our house.but her levels werent going down.
then from something i heard somewhere and just an odd gut feeling i got rid of all our MELISSA AND DOUG TOYS. that is the only thing i changed and removed from our home. we went back in and her lead level dropped to 3 she was in the clear!!! i thought maybe it was just a coincidence but then my friend's dd had high lead levels, she too only removed melissa and doug toys from her home and VOILA! lead levels dropped to the safe/normal range.
NOW, a diferent friend of mine went to her local tv station b/c they had an expensive lead testing machine and she brought a few toys including MELISSA AND DOUG and what do you know- trace amounts of lead were found!
now knowing it's not just a coincidence I felt like I should let everyone know!!!