Dyslogic Syndrome: Why Millions of Kids are "Hyper," Attention-Disordered, Learning Disabled, Depressed, Aggressive, Defiant, or Violent--& What We Ca

[Pen]

I happened on this book at the library while looking for something else and was caught by the title: Dyslogic Syndrome: Why Millions of Kids are "Hyper," Attention-Disordered, Learning Disabled, Depressed, Aggressive, Defiant, or Violent--and What We Can Do About It by Bernard Rimland.  I have not finished it yet. Rather than say more at this point, other than that it is changing how I am thinking about a lot of things I see IRL and read on these boards, I'd like to put it out here and hope that others will read it too and then want to discuss it. And maybe it can help somebody here.

 

Here is a link: http://www.amazon.com/Dyslogic-Syndrome-Attention-Disordered-Aggressive-Violent/dp/1843108771

[Lecka]

I just peeked at it, and the author is someone I have heard of.

 

I believe he has a son who has autism, and that he was someone who really combatted the idea that autism was caused by "refrigerator mothers."

 

I have read about him, that before the Internet, he would mail out information to parents who sent him a SASE, and it was one of the only ways some parents could get any information (I may be wrong about this and remembering it wrong).

 

He has always come across as a kind and respectful person when I have read about him.

 

He is also associated with the Autism Research Institute.

 

But I re-read certain autism books from time to time, and I can tell the pages that discuss him and things he did with his son when I run across them again. I read Neurotribes recently and maybe that is the book that had a nice section on him? I am not sure. I thought he came across well, though.

 

Edit: https://en.m.wikipedia.org/wiki/Bernard_Rimland I have definitely read about him recently, bc he was involved with the movie Rain Man and I remember that.

 

I do think it was in Neurotribes.

 

It was a good section, if you want to flip through it and read more about the author.

Edited March 11, 2016 by Lecka

[nature girl]

Just glancing through the sample pages available of the book, it looks like he's blaming these disorders primarily on vaccines and diet.

 

I hope this comes out right but...while I think diet is extremely important, changing a child's diet and giving him supplements is probably not going to cure the disorder in many, if not most. (We've always fed my DD organic preservative and dye-free, low sugar, and have been supplementing her with multiple vitamins, minerals, fatty acids and supplements over the past year. We've also tried a very restrictive elimination diet. And she still has ADHD...)

 

I know one of his points is to keep parents from blaming themselves, but I worry that exactly the opposite will happen with parents who've vaccinated their kids on schedule, have needed their labor induced, have needed a C-section, and are feeding their kids processed foods (because those are the foods they enjoy or because that's all they can afford.) That's not to say he doesn't have excellent points, and I'm sure the changes would work for some, especially those with food allergies/intolerances, but at least from the little I've read I don't think he has all the answers. (ETA: I'm sure there's more I'm not seeing in the sample pages, though.)

Edited March 11, 2016 by Anna's Mom

[WoolC]

Just confirming that Bernard Rimland is featured in the book Neurotribes, you're remembering correctly, Lecka. Anna's Mom is also correct that he is anti-vaccines and advocates for special diets and supplements to treat autism. I agree that these can be of limited help to children but certainly not a cure and I share Anna's Moms concerns about those touting cures through diet and nutrition.

[maize]

I went ahead and ordered the book.

 

In my family, it is obvious that a lot of the challenges we deal with have a genetic component. Some of that may be linked to mutations that affect various metabolic pathways, there's evidence of that in the genetic testing we have had done. I think medically we are on the brink of a big leap forward as we learn more about human genetic variability and eventually figure out how to tailor diet, supplements, and medication to address individual genetic expression.

 

I admit to being leery of anyone who is strongly anti-vaccination.

[Lecka]

He was writing in a different time period though, in some ways.

 

I have an open mind (not knowing a lot about him) about whether he would be anti-vaccine *today* now that studies have been done and information has come out about Andrew Wakefield.

 

I think to have suspicions about it before the studies and the information about Andrew Wakefield etc. is a lot more understandable, bc I do think things about it made more sense at the time with the information available.

 

If he were a contemporary writer I would think it was more of something where it represents him as someone who ignores studies and stuff.

 

Thanks for letting me know it was Neurotribes! I read it fast and now I want to read it again.

 

I do personally know two kids who have had major improvement (but still have autism) with biomedical. So I do believe it can be helpful. Especially one of these kids, I think was blown off and his mom told it was just autism, which is pretty upsetting, when he could be helped!

 

But I do not do it bc of what my son's symptoms are (plus some logistics, etc). And, I used to get really annoyed with a few people acting like if I would only do some simple little change in our diet, all our problems would be solved. It was extremely rude and offensive to me, but people saying it would be like "but I saw it on Oprah" or something like that.

 

I have gotten better at how I talk to people about things and now it is something where I can have a conversation and share some brief information about what we are doing (like one sentence -- even "we are happy with what we are doing") and it is working to leave me not feeling offended/judged, and it seems like it is working in my conversations.

 

Either that, or I just haven't run into anyone rude in a while!

[Pen]

Just glancing through the sample pages available of the book, it looks like he's blaming these disorders primarily on vaccines and diet.

 

I hope this comes out right but...while I think diet is extremely important, changing a child's diet and giving him supplements is probably not going to cure the disorder in many, if not most. (We've always fed my DD organic preservative and dye-free, low sugar, and have been supplementing her with multiple vitamins, minerals, fatty acids and supplements over the past year. We've also tried a very restrictive elimination diet. And she still has ADHD...)

 

I know one of his points is to keep parents from blaming themselves, but I worry that exactly the opposite will happen with parents who've vaccinated their kids on schedule, have needed their labor induced, have needed a C-section, and are feeding their kids processed foods (because those are the foods they enjoy or because that's all they can afford.) That's not to say he doesn't have excellent points, and I'm sure the changes would work for some, especially those with food allergies/intolerances, but at least from the little I've read I don't think he has all the answers. (ETA: I'm sure there's more I'm not seeing in the sample pages, though.)

 

 

I don't think he has all the answers either.  But I think the way you are looking at what he is saying is incorrect.

 

At least as I read it, he is considering a whole host of possible underlying causes that may be present in a number of different conditions.  Not that X will cause Y or that your child necessarily has had Q thus manifesting as W. But, for example, he raises lead or other heavy metals and other toxins as potentially causing a number of brain related problems. And we know that that can be so, we just tend to think (IME) that other than rare cases like Flint, MI, most kids are not exposed to lead. But that is not true. Most cities in the USA apparently have too much lead, and many have more than Flint does according to something I heard on the radio recently.

 

Anyway, it is not the case that he is blaming everything on vaccines and diet.

[Pen]

I went ahead and ordered the book.

 

In my family, it is obvious that a lot of the challenges we deal with have a genetic component. Some of that may be linked to mutations that affect various metabolic pathways, there's evidence of that in the genetic testing we have had done. I think medically we are on the brink of a big leap forward as we learn more about human genetic variability and eventually figure out how to tailor diet, supplements, and medication to address individual genetic expression.

 

I admit to being leery of anyone who is strongly anti-vaccination.

 

 

I don't know his over all stance on vaccines having only encountered this one book. Vaccines are mentioned on 5 pages (of 190 page book) according to the index. He writes to avoid thimerosal containing vaccines, and to ask for single-vaccine shots, rather than combinations such as MMR, and to titre if possible before immunizations to see if shots are unnecessary. Not to give a repeat dose of one that already caused a bad reaction, not to give one when the child is ill, and to give vitamin A and C before taking a child for vaccines.

 

To me that does not seem strongly anti-vaccination, but YMMV. 

 

If this book is seen as mainly blaming vaccines for problems kids have, then I am thinking maybe it is the pro-vaccination lobby at work--or trying to twist this thread into a vaccine discussion-- because it is hard for me to see how mentions on 5 pages (one page has an 8th bullet point at the bottom of the page, as summarized in the paragraph above, that ran over from one page to the next) can be seen as the main gist of the book.

[maize]

Average blood lead levels in children were much, much higher back when lead based paint and leaded gasoline were ubiquitous, we have made definite progress in reducing lead exposure.

 

Mercury levels in vaccines are down too, and I am definitely happy about that.

[Tsuga]

I do not agree with his analysis or thesis or approach.

 

As a parent I do understand that he is trying to do the best he can for his son.

[maize]

I do not agree with his analysis or thesis or approach.

 

As a parent I do understand that he is trying to do the best he can for his son.

It sounds like you may have read the book, can you be more specific about what you disagree with and why?

 

This is the first I have heard of this fellow.

[WoolC]

I don't know his over all stance on vaccines having only encountered this one book. Vaccines are mentioned on 5 pages (of 190 page book) according to the index. He writes to avoid thimerosal containing vaccines, and to ask for single-vaccine shots, rather than combinations such as MMR, and to titre if possible before immunizations to see if shots are unnecessary. Not to give a repeat dose of one that already caused a bad reaction, not to give one when the child is ill, and to give vitamin A and C before taking a child for vaccines.

 

To me that does not seem strongly anti-vaccination, but YMMV.

 

If this book is seen as mainly blaming vaccines for problems kids have, then I am thinking maybe it is the pro-vaccination lobby at work--or trying to twist this thread into a vaccine discussion-- because it is hard for me to see how mentions on 5 pages (one page has an 8th bullet point at the bottom of the page, as summarized in the paragraph above, that ran over from one page to the next) can be seen as the main gist of the book.

I haven't read this particular book, so I'm not saying that the main purpose of this book is anti-vaccination. I read Neurtotribes which traces the history of aspergers and autism and it covers the lifetime of Bernard Rimland and his ideas pretty well. He was very influential in bringing parents of autistic children together, disseminating information and creating networks. The groups that he was instrumental in creating moved away from him as parents shifted their focus onto getting acceptance and accommodations for their children, while Rimland remained stuck on biomedical interventions without scientific research to back it up.

 

Again, I'm not saying that these interventions are completely without merit. In some cases, food intolerances and the like can be at the root of difficulties. Sometimes that it is not the case, and like Lecka said it can be frustrating to hear from people who saw an episode of Oprah or Dr. Phil that if you would just cut out gluten or take mega doses of vitamins your child would be "normal."

[Tsuga]

I have read other articles. I would not purchase the book. I am very opposed to the propagation of the vaccine hypothesis, I am pro neurodiversity, and finally while obviously diet is important I believe that the emphasis on food control is misplaced and is parent-blaming.

[Lecka]

I think it is very frustrating as a parent, where I don't even think my child is sick or ill, but I think he is healthy and doing well.

 

But another person thinks my son is ill, and I am neglecting him.

 

That is how it can feel to be a parent who has looked into biomedical and concluded it is not appropriate at this time.

 

But I am a better advocate now in some ways, just to say "my son is doing well, he is not ill" or to turn the conversation in a positive way.

 

But really, while I am not totally on the neurodiversity side, it is really not nice for people to think my son is use when he is not.

 

It just drives me crazy!!!!!!

 

But I am talking to people where, for all they know, I DO think he is ill, so I can share some information and feel like we are more understood.

 

But I am happy for kids who need this treatment and can benefit from it, too.

 

But I think sometimes people are not aware of a lot of backstory and a lot of other information that makes biomedical be problematic for some people, when they have heard Jenny McCarthy or someone present information as if it is going to be that way for everyone, and all you have to do is to do what she did.

 

Anyway -- it is something I have to deal with as a parent and has consequences for me as I meet people and they have an impression of my son.

 

So -- it is frustrating at times!

 

But it is not that I am really against biomedical or don't think it helps anyone.

 

There is more complexity and I am not well-represented by some Jenny McCarthy type of person saying her son was ill and poisoned, and then recovered.

[Indian summer]

I have not read the book. But I do know of a naturopath that is curing many of these issues (ADD, Asperger's, OCD, anxiety etc) with mineral supplementation. That simple.

Edited March 11, 2016 by Indian summer

[Lecka]

And that proves my point.

[Pen]

Average blood lead levels in children were much, much higher back when lead based paint and leaded gasoline were ubiquitous, we have made definite progress in reducing lead exposure.

 

 

 

 

 

 

 

 

Yes. but still...

 

 

Childstats.gov - America's Children: Key National Indicators of Well ...

 in 2005–2006, 15 percent of U.S. homes with young children had indoor leadhazards, including high levels of lead in dust or deteriorated lead- based ...

 

I am thinking that it may be less than it was at some time in the past, but that 15% of homes with young children in US to have lead hazards is still a lot. And since I am not sure how lead hazard is defined, I am not even sure that means 85% are lead-free. .  And then too, the average blood level being down does not help much for those children in whom it is too high for them even if down on average, causing them troubles given whatever susceptibility they may have.  

 

 

 

 

 

What level of lead in blood do you consider good for your own children?  What level do they have?

 

 

 

 

 

I am also thinking maybe this sort of thing--lead exposure and so on--is kind of a "them" issue--those people on the other side of the tracks issue for most people on these boards.

 

I guess we are part of the "them" on the other side of the tracks. We live in an old house that has had lead paint, lead painted outbuildings, places where no doubt old leaded gas vehicles and farm equipment has been, and lead bullets from hunting are not uncommon to come across and probably are lying at the bottom of creeks and ponds and reservoirs, maybe even ones that supply drinking water--our whole area is like that out here in an old rural area where leaded red and leaded white paint were considered the best and right thing to use, and a good farmer would have kept his place thickly coated in the stuff, just as much, and for all I know, maybe it is even more a problem in an area like this than inner cities would be. And the nearby city has lead in its pipes too, I believe. New York City apparently had less because unions insisted on copper piping...and a lot of buildings were made of brownstone and materials that weren't painted.   When I moved from a place I had been in earlier childhood to NYC the kids there seemed so smart and advanced compared to the kids I had been used to, probably that is not related, and certainly NYC has its problems...but then again, maybe it is related.  Maybe there was a higher apparent amount of brilliance because there was less damage. I had used to think of it as just due to population size, but the place I'd been in before NYC was also a huge city.  Just musing.

 

 

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6213a3.htm

 

 

Even as the % of children with high levels declines, as the population goes up the total number of actual persons with high blood levels is still a lot of actual persons, a lot of actual children. Then adding on what we are learning about changes in one generation being passed to future generations, epigenetics, and things that are also capable of changing, mutating DNA, that too is troubling even for what continues on from the past.

 

I also find the way they arrived at their level as simply taking the level that is what the highest thus and such percentage has and taking that to be a problem level instead of taking zero as the goal also troubles me. It is sort of a circular definition. If you define too high as the level that the worst 2.5% have, then obviously only 2.5% will be found to be too high. It says nothing about the actual health of anyone else.

 

 

 

How many kids are there represented by parents on these forums at least a hundred? probably a lot more? Assume that only exactly the national average number of kids represented here have problems from too much lead, and that the too much magically cuts off with no problems at anything below the .5 micrograms per decilitre. That still means that for a certain number of parents who are being told "go to a therapist" or "get neuropsych evaluations" or "discipline more consistently" or "read The Explosive Child" or "use Barton" the problem may actually be lead.  And for some it may be something else like that but different, maybe a pesticide, maybe mold, maybe a combination of things.

 

 So even if only helpful to a few of those,and not necessarily instead of, but maybe in addition to np eval, consistent discipline, Barton, etc.,  still that could be a huge thing in a few people's lives and people those lives touch.

 

 

 

 

More specifically on lead, this looks interesting (link not working for me):  

Lead Wars: The Politics of Science and the Fate of America's Children (California/Milbank Books on Health and the Public) Paperback â€“ August 15, 2014

by Gerald Markowitz (Author), David Rosner (Author)

4.8 out of 5 stars   9 customer reviews

 

 

 

 

 

For us, personally, in our circumstances, lead is very likely a relevant factor notwithstanding that national averages may be down, but the overall situation to me seems that even if the specific of lead or any other particular thing is not as relevant now as maybe it was some years ago when either of these books was written, the current or next toxic substance being pushed and promoted is still an issue in  the way our country (maybe planet) approaches things and giving substances a sort of innocent until proven guilty pass, especially when companies that make a lot of money on them--lead, tobacco, etc., cover up evidence of harm.

 

 

[Lecka]

Oh, I am very disturbed by lead poisoning, too.

 

I don't think this is a "haves and have nots" issue as far as responses here.

 

With Flint bringing it back to mainstream attention, I have been very concerned about the amount of lead paint still in homes, and the presence of lead in dirt in areas where a lot of cars drove with leaded gasoline.

 

There are different contexts for this kind of thing with autism, though.

 

Like -- it is offensive to me to say my son is "damaged."

 

But if I thought my son had gotten lead poisoning, then I think "damage" would be a fair word to use bc he would have been damaged by lead.

 

There are a lot of books and stuff right now about seeing autism as "a way of being" and not "damaged" or "a shell."

 

It is not the same as thinking there are not environmental problems, or that lead poisoning is a problem for many people.

 

Unfortunately too there are people who talk about vaccines being bad, who use really horrible and offensive language to talk about how horrible it is to have a "damaged" autistic child. It is context, too, and it is part (not the only reason, but part) of the reason that I am out off by people who are against vaccines.

 

This is just how it is for me, though, as an explanation.

 

I don't think that I am above having to worry about lead poisoning, my kids were tested when they were little.

[Pen]

... Sometimes that it is not the case, and like Lecka said it can be frustrating to hear from people who saw an episode of Oprah or Dr. Phil that if you would just cut out gluten or take mega doses of vitamins your child would be "normal."

 

 

Sure I agree with that.  I have my own health problems to which I often get versions of the "apple cider vinegar will cure celiac" comments, and find it frustrating. And I think that Rimland even in this book --which isn't about vaccines other than a few passing mentions and also does not say that cutting out gluten will cure all--has got way too strong a view that everything can be helped (though not necessarily cured) by dealing with the physical / environmental side. But I do think some things for some people some of the time possibly or probably can be. And I think these forums tend to lean very strongly the other way, maybe because there are a lot of people who have been frustrated like you and Lecka have been. And maybe because people who find that their issues are solved environmentally gravitate elsewhere.

 

I have been on these forums for several years now, and yet with all the myriad, and often wonderful and helpful responses and replies and suggestions that I have received, at no time that I am aware of have I ever posted about any issue with my son and had anyone here ask about possible lead exposure, for example.

 

Now, it may be that it will turn out not to be an issue at all, maybe his level will turn out to be zero, but might it not be also frustrating and sad to find out that years could have been spent dealing with apparent PTSD, dyslexia, discipline and other approaches, trying to find a curriculum friendly to his issues, accommodating, coping, for what might be a higher than his metabolism can handle lead level issue, or might be something else along those lines?

 

See, I personally don't believe that even one case of Celiac will be cured by apple cider vinegar, because, well, Celiac is genetic and it makes no sense to me that ACV could alter that--(but I'd be willing to be proved wrong). But I do believe that there may be at least one case of ADHD that is related to gluten intolerance, because I have personally witnessed that, and also because even without witnessing it, the idea that something could cause an inflammatory reaction which might lead to serotonin / dopamine or other disregulation seems perfectly possible....in some cases.  And I believe that lead could be related to it... in some cases. And so on. I don't think there is a single cause, and I think some people may be born with it or a tendency to it as well, and even that born to it may be the majority.

 

There may only be 25 kids amongst the children of all the posters and lurkers here for whom physical / environmental issues are relevant to whatever issues there may be going on--certainly there are kids who aren't having any issues, only just that the parents seek curriculum ideas or help with what is going on with the family cat or a good recipe. But for those 25 kids it could make a big difference. And maybe it is more than 25. I just chose 25 because of the CDC's own statistics for recent too high lead levels and guesstimating around 1000 children for the number of posters and lurkers and hoping that I am guessing low so as to make my number of possible number of people here who could conceivably be helped by considering the physical side quite reasonable.

 

 

Or lets look at it in reverse. Is this such an unusual group of people posting and lurking that there is not a single case of anyone on here with a child who has an elevated lead level by CDC standards? To use lead as an example? Are we sort of like Lake Woebegoners where everyone on here is not just above average, but perfectly healthy and doesn't fit with the national statistics? I realize this may not apply at all for people from other countries, at least not for lead, since many other places recognized and dealt with it a lot sooner than USA started to do so. But do you think we don't have our representative 2.5% of the USers with elevated lead levels as CDC defines that? Nor other physical issues, or toxic exposures or related? Some of which just might perhaps maybe affect things like learning or behavior or any of the things in that long subtitle? And some of which are, like lead, known to do that? Or even which could be having an affect on subsequent generations so that something that appears to be "normal" as just an inherited neuro-difference could have been started by a toxic or similar exposure in some prior generation?

[Jean in Newcastle]

Depending where you are on the spectrum, ASD is largely diagnosed by symptom.  The problem with symptomatic conditions is that the symptoms can actually fit a wide range of conditions, not just one.  So a good doctor if presented with a child with autistic symptoms SHOULD screen for a number of other causes (like lead poisoning) first.  I put "should" in caps because unfortunately that isn't always the case.  Also - even if someone has ASD, it is co-morbid with a lot of other things.  Just because it is co-morbid doesn't mean that there is necessarily causation there or that everyone with ASD has those other conditions. 

[Arcadia]

Now, it may be that it will turn out not to be an issue at all, maybe his level will turn out to be zero, but might it not be also frustrating and sad to find out that years could have been spent dealing with apparent PTSD, dyslexia, discipline and other approaches, trying to find a curriculum friendly to his issues, accommodating, coping, for what might be a higher than his metabolism can handle lead level issue, or might be something else along those lines?

the physical side quite reasonable.

...

Is this such an unusual group of people posting and lurking that there is not a single case of anyone on here with a child who has an elevated lead level by CDC standards?

One of the WTMers has a child who had lead poisoning from where she worked. She brought him with her to work.

 

My DS10 had blood work to test for lead poisoning at our request when he was one. The pediatrician said that the soil in where we were renting is recognized as one of the potential lead poisoning areas. So insurance would pay up in full for lead testing. No one ask me or my neighbors to test our babies even though the entire zip code and neighboring zip codes are all affected. Our pediatricians did not volunteer the info. His lead levels were lower than whatever cutoff point. It was our no 1 reason to buy a small place in area that is supposedly less polluted but still near to hubby's workplace.

 

Another thing to check besides lead in soil is if your home is near a superfund site. Some are still hazardous. Hubby's workplace used to be next to one.

http://www.epa.gov/superfund/search-superfund-sites-where-you-live

 

Prenatal, postnatal and pediatric care was much better in my home country. Does the environmental factors cause the 46 percentile difference in my kids processing speed? We would never know, but we were glad we could afford to move to a slightly better locale to minimize risk.

 

Hubby and I grew up learning in school and in news about industrial pollution of waterways leading to large amounts of dead fish. We are very wary as a result.

[Lecka]

We filled out forms asking about the condition of our housing at the pediatrician. I am pretty sure all my kids had a blood test.

 

I didn't realize that was not standard.

 

My oldest is 10.

 

I have not heard anything about it since they were babies, but I did hear about it at the pediatrician when my kids were little.

 

I am pretty sure it flagged on the computer to ask me again when we had a change of address.

 

I only heard about exposure from paint, though.

Edited March 12, 2016 by Lecka

[Pen]

Oh, I am very disturbed by lead poisoning, too.

 

I don't think this is a "haves and have nots" issue as far as responses here.

 

With Flint bringing it back to mainstream attention, I have been very concerned about the amount of lead paint still in homes, and the presence of lead in dirt in areas where a lot of cars drove with leaded gasoline.

 

There are different contexts for this kind of thing with autism, though.

 

Like -- it is offensive to me to say my son is "damaged."

 

But if I thought my son had gotten lead poisoning, then I think "damage" would be a fair word to use bc he would have been damaged by lead.

 

There are a lot of books and stuff right now about seeing autism as "a way of being" and not "damaged" or "a shell."

 

It is not the same as thinking there are not environmental problems, or that lead poisoning is a problem for many people.

 

Unfortunately too there are people who talk about vaccines being bad, who use really horrible and offensive language to talk about how horrible it is to have a "damaged" autistic child. It is context, too, and it is part (not the only reason, but part) of the reason that I am out off by people who are against vaccines.

 

This is just how it is for me, though, as an explanation.

 

I don't think that I am above having to worry about lead poisoning, my kids were tested when they were little.

 

 

But I am not so sure that the issues you are raising are about the book that I have mentioned?

Versus some other book or article that its author might have written?

Or maybe other people mentioned in this thread who wrote other books?

Or some other book that talked about the author of this one?

 

I like the "way of being" idea...

 

I think it can also apply even if there is some sort of "damage"

they are not mutually exclusive.

I have a Down Syndrome relative who, well, that is his "way of being" pretty well describes him.

He is just him, the way he is.

And at the same time, the why of that is pretty well understood.

Or similarly, a person I know who adopted a Fetal Alcohol child, that is the child's Way of Being, though clearly it came from exposure to alcohol, and one might wish it had been otherwise, work toward prevention of FAS, even while embracing and loving the child for who she is.

 

I am thinking this book, the one I am now reading and have mentioned in this thread,

would not be so helpful in your case because you already have your son figured out

the environmental issues like lead levels have been ruled out

and you have an approach that is working for you.

 

It is maybe more useful to someone like me to read through and think,

for example, 

Hey, could this that I am seeing in my child be lead related?

Could it be pesticide related?

Could it be mold related?

 

Could it be food related?

Could it be ___________ related?

 

Might such and such therapy that apparently helped so and so with a similar seeming situation also help my son (or daughter as case may be)?

[maize]

I didn't mean to dismiss lead as an ongoing concern, I just wanted to point out that we are making progress. I've worried about lead myself, when my older children were young we lived in an old apartment building with peeling lead-based paint (I tested it) all over the outside. We didn't have much choice. We did what we could to mitigate the situation, when I had my son tested his level was considered acceptable but I had read the research that ADHD had been linked to even very low levels of lead.

 

Was his ADHD triggered by lead exposure? Possibly. My guess (and there is growing research to support this) is that it is a combination of certain genetic susceptibilities combined with environmental exposures.

Edited March 12, 2016 by maize

[Lecka]

Oh, if it is helpful I am glad it is helpful.

 

I hope it is helpful.

 

Be careful, though. There are some unscrupulous people out there who prey on parents.

 

It is too bad there are questionable people who are ruining things for everybody, but there are.

 

I also wonder, since you mentioned a pro-vaccine agenda, if you are aware that in the past couple of years Andrew Wakefield has been revealed as using fraudulent information in his vaccine complaints. I think a lot of people are not aware of it who do not really follow autism stuff.

 

It is really problematic when there are people who think it is a vast conspiracy against him.

 

Well, even if this book is not exactly about this, it is implicated in its way, bc it has some implications for the entire field. It just does, bc some people still say his disproven research is true.

 

It is not that it implicates the idea that there are environmental issues causing problems for children. That is true! Like lead, etc.

 

But when there are people who still champion Andrew Wakefield it is problematic, bc he is now known to have lied.

 

But that is just one thing.

 

It is still obvious that people have health problems caused by molds, lead, etc.

 

I personally am vey disturbed by chelation therapy for lead, when it is done by these non-mainstream people. I consider it very out-there and questionable. I do not know anyone who has done it.

 

If you are not thinking anything of that ----- that is something where I am drawing a wrong conclusion.

 

But you have to sift through and keep in mind that mixed in with things that are good, there can be things that are very popular with some people, and then considered to be potentially harmful by other people.

 

But I don't want to make it seem unwelcome to talk about it! That is not nice. I am interested, actually. It may make more sense than I know right now, and some things I have heard of may be more fringe than I realize, too, and not really mainstream.

 

http://mobile.nytimes.com/2011/04/24/magazine/mag-24Autism-t.html?_r=0&referer=

 

If you are reading things from a time period when as far as people knew, he was not telling lies, then you get some different information. I thought it was all very plausible, until it came out that he was misrepresenting his information.

 

But it is like -- okay, this one hypothesis is wrong. It is not like no kids have allergies or are effected by environmental factors! It is just one of those things, they get associated together sometimes.

Edited March 12, 2016 by Lecka

[SnMomof7]

Interesting thread. I haven't read the book, but I'm going to ask our doctor for lead testing. Just in case.

 

Our kiddos have never been vaccinated, we eat gluten free and have mainly done so for many, many years due to various allergies and Intolerances in our family, our children had spent 99% of their lives on organic farms and acreages in various locations. They were all born at home, drug free (except the twins c-section), we didn't have routine ultrasounds, eye drops, or any of that jazz. They've had lots of fish oil, vitamins, homeopathy, etc. as have I.

 

And you know what? They are incredibly neuro-diverse in various ways. :). LOTS of sensory kiddos...almost all of them, lots of kiddos needing help with speech, (one with a severe speech disorder, likely apraxia) one being diagnoses with ASD, another probable that I need to have screened, another demonstrating...something else...ADHD maybe, one of our twins just started pulling at his clothes and covering his ears frequently.

 

They come by it honestly, I think. We have a lot of sensory people on both sides of the family and a lot of BAP traits. I seem to be borderline ASD myself.

 

Just wanted to chime in and say that you can do it all "right"....

 

I've got my chips on genetics at this point.

[Arcadia]

They come by it honestly, I think. We have a lot of sensory people on both sides of the family and a lot of BAP traits. I seem to be borderline ASD myself.

 

Just wanted to chime in and say that you can do it all "right"....

 

I've got my chips on genetics at this point.

I have sensory, asthma, hay fever, eczema running on my side of the family. I think OP is thinking of other factors that might not be known to her. For example, no one had food dye sensitivity until my oldest. He went hyper and crash only if snacks had food dyes for a few years. We check labels until he wasn't getting those reactions anymore.

 

My youngest was labeled failure to thrive as a baby. The lead blood test just confirm or eliminate a possibility. He had other blood tests like for anemia done and he was mildly anemic.

[Mrs Twain]

My theory is that there too many plastics used in the microwave. I worked in a lab in college that was studying how much of various chemicals come off the wrappers or plastic coverings and enter the food during heating in the microwave. It was certainly significant. Since then I don't microwave or bake anything with plastic. I only use real dishes covered with paper towels in the microwave and non-plastics in the oven.

 

I think my theory is just as good as everyone else's...

:)

[nature girl]

So I think we're mostly on the same page here...

 

My guess (and there is growing research to support this) is that it is a combination of certain genetic susceptibilities combined with environmental exposures.

 

I will buy that. My DD's birth mother smoked, drank and used heroin (perhaps other drugs as well) while she was pregnant. Did those toxins lead to Anna's ADHD? I wouldn't be surprised if they were a trigger. Her other birth-son who was also exposed in utero is autistic, while she has two other children, one before she became addicted and one after recovery, and both are neurotypical. So the risk of exposure to toxins is very real, but from the little I've seen, his list of what is considered a toxin is too broad and can lead to panic.

 

Could vaccines be one of those triggers? Possibly, I think the CDC has agreed that although they don't cause a child to become autistic, they can trigger it in very rare cases. So what do we do? Stop vaccinating because of those very few? Not vaccinate kids who have a sibling or parent on the spectrum? A cousin or aunt? Where is the fear going to lead? (And I understand this is only a small part of the book, and don't mean to start a vax debate at all. I just worry that parents will start blaming themselves for vaxing, needing pitocin, or not being able to afford organic, and think they're to blame for whatever their kids are going through.)

 

Again, from the little I've seen of the book, it's saying these toxins can be the factors, he gives lists of supplements and dietary restrictions that can be tried. And then from the blurb it looks like he says that meds are dangerous and should almost never be used to treat kids. That seems like way too far of a leap. Regardless of what may have triggered our children's differences, the differences are here. We can try dietary changes and supplements, but for the vast majority of our kids, although it may make a small difference, it won't change their genetics and they will never be neurotypical. I don't medicate my daughter (yet), but statements like it looks like he's making, saying meds are rarely necessary because kids can be "cured" by doing or not doing x, y, z instead (and I don't even know if he's giving the x, y, z to cure kids from exposure to toxins...Is he?) aren't all that helpful to me. In fact, and maybe that's why I feel so emotional about all this, they make me feel worse thinking the difficulties my daughter is going through could have been prevented.

 

I say this knowing there are probably many people who COULD be helped following his suggestions but...IMO the majority will not. ETA: That's not to say I think the book shouldn't be paid attention to. It does give an interesting way of looking at what's going on with our kids, and without even having read it, just reading this discussion of its ideas has changed some of how I think.

Edited March 12, 2016 by Anna's Mom

[SnMomof7]

My theory is that there too many plastics used in the microwave. I worked in a lab in college that was studying how much of various chemicals come off the wrappers or plastic coverings and enter the food during heating in the microwave. It was certainly significant. Since then I don't microwave or bake anything with plastic. I only use real dishes covered with paper towels in the microwave and non-plastics in the oven.

 

I think my theory is just as good as everyone else's...

:)

Oh dear, I forgot to mention that we've never owned a microwave. ;)

[SnMomof7]

I have sensory, asthma, hay fever, eczema running on my side of the family. I think OP is thinking of other factors that might not be known to her. For example, no one had food dye sensitivity until my oldest. He went hyper and crash only if snacks had food dyes for a few years. We check labels until he wasn't getting those reactions anymore.

 

My youngest was labeled failure to thrive as a baby. The lead blood test just confirm or eliminate a possibility. He had other blood tests like for anemia done and he was mildly anemic.

I totally agree with removing triggers once identified. My oldest DD has eczema, asthma, and various allergies - mold, bunnies, pollen etc. etc. and corn...which is in everything. Sigh. And she isn't the only one with multiple allergies, just the most complicated. We don't eat much by way of diversity around here.

 

I'm just saying I don't think it's causative for disorders in most cases.

[Innisfree]

I haven't read the book, but wanted to respond to a couple of points already mentioned.

 

First, about doing everything "right" and still having issues: this has absolutely been our case. Planned, very-much-wanted pregnancies, no alcohol while pregnant, no caffeine, prenatal vitamins, healthy eating, the whole works, and we still have issues. I do see a definite genetic link.

 

Second, even if birth parents have not observed all the "right" rules, I wonder if in some cases they might not be (or have begun by) self-medicating issues which are also essentially genetic. Obviously fetal alcohol syndrome, for example, has long-term consequences for kids, and other prenatal influences do as well. But if we traced the chain back to the birthmother before she ever drank, would we have a larger-than-average chance of finding someone with an underlying neurological issue of her own? Who was probably never identified or given the supports she needed? I don't know, I'm just wondering here. Not suggesting that everyone with a chemical dependency has an unidentified neurological difference, just that if their kids do, they might also.

 

At the same time I would not be at all surprised to find that environmental factors can be very important as well.

[Pen]

Oh, if it is helpful I am glad it is helpful.

 

I hope it is helpful.

 

Be careful, though. There are some unscrupulous people out there who prey on parents.

 

It is too bad there are questionable people who are ruining things for everybody, but there are.

 

I also wonder, since you mentioned a pro-vaccine agenda, if you are aware that in the past couple of years Andrew Wakefield has been revealed as using fraudulent information in his vaccine complaints. I think a lot of people are not aware of it who do not really follow autism stuff.

 

It is really problematic when there are people who think it is a vast conspiracy against him.

 

Well, even if this book is not exactly about this, it is implicated in its way, bc it has some implications for the entire field. It just does, bc some people still say his disproven research is true.

 

It is not that it implicates the idea that there are environmental issues causing problems for children. That is true! Like lead, etc.

 

But when there are people who still champion Andrew Wakefield it is problematic, bc he is now known to have lied.

 

But that is just one thing.

 

It is still obvious that people have health problems caused by molds, lead, etc.

 

I personally am vey disturbed by chelation therapy for lead, when it is done by these non-mainstream people. I consider it very out-there and questionable. I do not know anyone who has done it.

 

If you are not thinking anything of that ----- that is something where I am drawing a wrong conclusion.

 

But you have to sift through and keep in mind that mixed in with things that are good, there can be things that are very popular with some people, and then considered to be potentially harmful by other people.

 

But I don't want to make it seem unwelcome to talk about it! That is not nice. I am interested, actually. It may make more sense than I know right now, and some things I have heard of may be more fringe than I realize, too, and not really mainstream.

 

http://mobile.nytimes.com/2011/04/24/magazine/mag-24Autism-t.html?_r=0&referer=

 

If you are reading things from a time period when as far as people knew, he was not telling lies, then you get some different information. I thought it was all very plausible, until it came out that he was misrepresenting his information.

 

But it is like -- okay, this one hypothesis is wrong. It is not like no kids have allergies or are effected by environmental factors! It is just one of those things, they get associated together sometimes.

 

 

I've not been involved with the whole vaccination controversy.  I never even heard of Andrew Wakefield until this thread. I'll look him up later.

 

My ds had his many infant and childhood vaccinations before he became my foster child, and I presume had whatever was standard at the time with or without thimerosal as case may be. He certainly had other things too, lots of ear infections and antibiotics. Largely unknown prenatal situation.

 

There is a lot that nothing much can be done about. Cannot go back to when he was an embryo and change whatever the conditions were then. There is some that can be done.

 

Lead is in my mind due to circumstances, recent news, etc.  

 

Here it is not something that is considered standard for pediatricians to mention.

 

But other things are mentioned in the book as well that I'd like to see if they can be checked into, such as cadmium, plastics, etc, etc. which all may also play a part, and be worth checking into further, and yes, genetics too.  And also of course, things not mentioned in the book as well.

 

I am not thinking about chelation at this moment. I have been looking at what can be done if it looks like lead is too high since if nothing much, maybe there is not much point. Also blood levels fall off quickly from exposure times, so what a blood test shows and what might have had brain effects may not equate. 

 

But I have been making changes. For example, even though our water tests "ND" (none detected) for lead, I am now realizing that that is none detected at a level which is whatever the EPA mandates--which may actually be higher than what would be healthful, so I have no way to know if we actually have 0 or some amount up to the EPA concern level. So to help that I am only using water that has been filtered via our Berkey rather than from tap for things like cooking pasta--I had been using tap water for cooking and the filtered just for drinking. And am trying to get ds to take water from home to his co-op instead of using the tap water or drinking fountains there. Our local grammar school knows they have lead in water and use bottled water for drinking--but that then is a plastics exposure. However, his co-op is at an old church with city water that probably is with lead piping at least in part, and may have lead solder in the building pipes as well etc., and probably just has never tested so does not know. For people going there for a few hours once per week for church it may not be such a big deal, but a couple of days per week and drinking a lot after playing hard and so on, may be more of a big deal.

 

Sadly, because he loves it socially, I suspect something is wrong environmentally at his co-op. It seemed like he was catching a bad slacker attitude from other kids. But this last week they had meetings and end of session special presentations, so I was there more than usual, and I felt totally...wiped out. From the way I felt, I am suspecting formaldehyde. Ironically the co-op moved to its new location because a prior one had had high mold levels, enough that people were feeling it and aware of it. Anyway after my extended time there I am thinking the "slacker" attitude may be the result of the building, not the fault of the kids. Yesterday and today, after several hours at the co-op, I could barely do anything. Or barely do anything right.

 

Oddly the way he has been acting since being at the co-op has resulted in people responding that what I am describing seems spectrum-y.  He has never seemed spectrum-y before this.

[Arcadia]

Formaldehyde can be emitted from furniture. There are quite a few news article on it.

[Lecka]

There could also have been pesticides sprayed or something like that.

 

I think that being currently sick (or effected) and linking it to inside air quality makes so much sense.

 

I know someone now who is moving (from a rental that may have problems) to try to help her daughter's asthma.

 

She started at daycare recently, and has not had a single episode there.

 

It would be great for them if that will help her to be healthy!

[poppy]

Your grammar school has lead in the water? What??

[Dmmetler]

My former school principal actually had people come in from the health department and test all kids who's parents gave permission for lead and heavy metals, and quite a few kids had levels high enough to warrant treatment. The neighborhood was right on a road that had been the major East-West route until the interstate was built, back in the days of leaded gas, plus old homes with lead paint, and it added up. We were also the "focused literacy" school for the district-the one that basically treated every kid like they had LD's through at least 3rd grade, which came out of the fact that so many kids in that school came in with significantly delayed early literacy/verbal skills.

 

I wonder if we wouldn't have needed the focused literacy program if they had been more proactive about lead abatement before the principal (the fourth I'd worked under at that school) pointed out that, given where the school was, lead was a real concern, and pressured enough people to do the testing?

 

I think it's good to look for environmental causes, food allergies/sensitivities, and so on when a kid is struggling. Just don't assume that ALL issues are due to them, or that a child who struggles doesn't have a parent who is already turning over every rock they can.

[Pen]

Your grammar school has lead in the water? What??

 

Yes.

 

 

A truck brings 5 gallon plastic water bottles so the kids do not drink the water in the pipes, or at least are supposed to not drink it--I think the fountains were disconnected to make it less likely, but they still could from sink faucets. They still use it for washing hands, art, and so on though.

 

Anyway, they are dealing with the lead, but then the water bottles mean there are plastics, which is probably less extremely damaging, but still a concern.

 

I would guess that most of the schools and other facilities in our area haven't even tested. Don't want to know.

[Lecka]

http://mobile.nytimes.com/2016/03/10/nyregion/elevated-lead-levels-found-in-newark-schools-drinking-water.html?smtyp=cur&_r=0&referer=

 

This is from the New York Times this week. It is about the issue of lead in drinking water in some schools.

Edited March 14, 2016 by Lecka

[Pen]

I'm just bringing up the article now.

 

Does it mention that it has only been since January 4, 2014 that it became illegal to install new plumbing with the wetted surfaces of pipes, fittings etc. having more than 0.25% lead in them? Most  of our schools and so on where I am, places where my ds attends activities, are older than that. For that matter probably also the water that is used to wet down produce in our stores is coming from plumbing that is older than that.  As well, if there is acidy/corrosive water it could probably eat through to below the safer "wetted" surface even of the new installations.

 

 

eta: then too, for many things, what the replacement is, is not necessarily always safe. For example, getting BPA out of plastics does not necessarily mean the new version is safe. Some paint that stopped having lead in it, instead used, I've heard, barium, cadmium or sometimes mercury. 

Edited March 14, 2016 by Pen