Wednesday, January 6, 2010

Autism and Diet -- Expert Panel Calls for Further Research

Don't be misled. I came across an article of some importance to those with children with ASD. However, the title of this article, as well as the opening paragraph, are extremely misleading and discouraging. It should be just the opposite.

I am referring to "Evidence lacking for special diets in autism," by Carlak Johnson of The Associated Press.

Mr Johnson reports that, "[a]n expert panel says there's no rigorous evidence that digestive problems are more common in children with autism compared to other children, or that special diets work, contrary to claims by celebrities and vaccine naysayers."

While this is technically a true reading of the panel's report published in the January issue of Pediatrics, the title of the article and the manner in which it is written, paint a very distorted view of the diets that many parents and professionals have found to help children with ASD, the connection between digestive issues and autism, and of course, those who employ such diets and believe there is a connection.

In truth, the article should have been entitled, "Experts call for more research concerning diet and autism."

The first paragraph should have read, "An expert panel has found that more research is needed to determine whether digestive problems are more common in children with autism. The panel also called for more research concerning the effectiveness of special diets now employed by the many concerned parents and professionals who work with children with ASD."

I mean, really, what message is Mr. Johnson trying to send when he compares "an expert panel" that "says there's no rigorous evidence" to the "claims by celebrities and vaccine naysayers"?

And, isn't it odd the way the second part of that sentence reads? It sounds like it says that the panel determined that "special diets" don't work. But, what it really says is that "celebrities and vaccine naysayers" belief that there is "rigorous evidence" supporting the use of special diets is incorrect.

Note the difference: the expert panel never, ever said that special diets don't work. It only said that there is a lack of "rigorous evidence" concerning the effectiveness of such diets, and the panel called for more research on this issue!

Words really do matter.

In fact, a careful reading of the actual report paints a very different picture. In a nutshell, the panel recognizes that (i) ASD children do suffer from gastrointestinal issues - some studies noting the prevalence of such issues to be as high as "70% or higher" in that population; (ii) there is evidence that these children have a more prevalent occurrence of food sensitivities and food allergies; and (iii) it is very important that these issues be treated since they may be the cause of many of the behavioral problems these children exhibit. The reason the study was undertaken in the first place was to determine whether there was an "evidence-based" diagnostic and treatment regime for gastrointestinal problems presented by ASD children!

And, while not finding well-structured studies that demonstrate that special diets help these children, the panel acknowledged the anecdotal evidence supporting such diets and called for more research in this area.

Specifically, the report found the following pertinent points:

1. The panel acknowledged that more research is needed on the prevalence of gastrointestinal issues and ASD: "The prevalence of gastrointestinal abnormalities in individuals with ASDs is incompletely understood" with "the reported prevalence of gastrointestinal symptoms in children with ASDs has ranged from 9% to 70% or higher." Furthermore, while "[m]ost of these studies had 1 or more methodologic limitations . . . the preponderance of data were consistent with the likelihood of a high prevalence of gastrointestinal symptoms and disorders associated with ASDs."

2. A specific gastrointestinal issue, i.e., "autistic enterocolitis" has not been indisputably established. The report does not state that "autistic enterocolitis" does not exist. Instead, it merely states that the study that "suggested" its existence is flawed, and therefore, in the panel's opinion, the existence of "autistic enterocolitis" has not been established.

3. At least one study found that 43% of children with ASDs have a problem with "altered intestinal permeability." However, the panel believes the "[e]vidence for abnormal gastrointestinal permeability in individuals with ASDs is limited," and that "[p]rospective studies should be performed to determine the role of abnormal permeability in neuropsychiatric manifestations of ASDs."

4. Nutritional deficiencies are presented by ASD children. "Nutritional deficiencies have been reported in patients with ASDs, which is not surprising because of the narrow food preferences of many affected individuals and/or purported therapeutic diets that might be nutritionally inadequate. In a study of 36 children with ASDs, regardless of unrestricted or restricted diet, essential amino acid deficiencies consistent with poor protein nutrition occurred more frequently than in age- and gender-matched controls."

5. There is evidence that at least some ASD children do respond to dietary interventions. However, the panel believes that more data is needed before dietary modifications can be routinely recommended. "Anecdotal reports have suggested that there may be a subgroup of individuals with ASDs who respond to dietary intervention. Additional data are needed before pediatricians and other professionals can recommend specific dietary modifications. Dietary modifications such as removal of milk for symptoms of lactose intolerance may be approached empirically, as with any other pediatric patient with consistent symptoms. The data on the value of specific diets being effective in the treatment of individuals with ASDs are difficult to assess. Many dietary modifications are believed to have a beneficial outcome, although placebo effects are likely to be high in this setting. The few studies in the literature are difficult to interpret without adequate control groups.

"Many parents and care providers have observed and reported improvements in problem behaviors with nutritional or medical interventions. Some of these therapies are based on purely observational reports; many are based on studies that may have reached erroneous conclusions because of recruitment bias, lack of validated or standardized outcomes, or inadequate controls. . . . Anecdotal reports that restricted diets may ameliorate symptoms of ASDs in some children have not been supported or refuted in the scientific literature, but these data do not address the possibility that there exists a subgroup of individuals who may respond to such diets."

6. While not endorsing a "gluten-free" or "casein-free" ("GFCF") diet, the panel does recognize that in at least one study, parents of ASD children who undertook these special diets "reported positive subjective clinical changes while their child was on the GFCF diet." Moreover, the panel does not explicitly discourage the use of such diets.

"Few studies have examined the effects of a casein-free diet, a gluten-free diet, or combined GFCF diet on the behavior of individuals with ASDs. To our knowledge, only 1 double-blind placebo controlled study has been published to date. In this double-blind crossover trial of GFCF or typical diet in 15 children with ASDs, there were no differences in measures of severity of ASD symptoms, communication, social responsiveness, and urinary peptide levels after 12 weeks. Nevertheless, after being informed of the results, 9 parents wanted to continue the diet and reported positive subjective clinical changes while their child was on the GFCF diet. . . . Parents need information to help plan a balanced diet within the restrictions imposed by the chosen diet. Given the real hardships associated with implementation of a strict GFCF diet, additional studies are needed to assess risk factors and possible markers that identify individuals who might benefit from these diets."

7. The panel recognized that immune problems have been reported in ASD children, and that research exists that suggest such problems may impact neurodevelopment. However, the panel notes that a direct relationship between immune dysfunction and ASD needs to be proven.

"There has been research to suggest that immune responses can influence neurodevelopment and that significant immunologic alterations may play a key pathogenic role in some individuals with ASDs. We are now able to accurately define immune status in individuals with ASDs. Well-defined studies are needed using larger sample sets and age- and geographically matched controls, with extensive immune analysis, to determine the precise relationship of immune dysfunction to clinical symptoms."

8. Moreover, there are preliminary findings that suggest a relationship between gastrointestinal inflammation and gastrointestinal symptoms associated with ASDs. Additional investigation into such a relationship is needed. "A few studies have suggested a relationship between gastrointestinal inflammation and gastrointestinal symptoms associated with ASDs. The gastrointestinal tract is the largest immune organ in the body, containing up to 80% of Ig-producing cells in the body. . . . These studies suggest an underlying chronic inflammatory process in some individuals with ASDs and co-occurring gastrointestinal disturbances. . . . These findings should be considered preliminary and will require confirmation."

9. Gut flora, health and disease are significantly related. Additional research concerning the relationship between gut flora and ASDs must be performed. "The microbiological ecosystem of the gut is complex and poorly understood but likely plays a significant role in both health and disease. Few researchers, however, have attempted to critically examine the relationship of gut microflora to ASDs. Future studies will require molecular approaches aimed at identification and quantification of microbial species. If an association is identified, it may lead to novel treatment trials."

In summary, the panel noted, [a]ccrual of new knowledge will advance our approach to the management of ASDs and co-occurring medical conditions. Recognition that problem behaviors might indicate an underlying medical condition will facilitate diagnosis and treatment and ultimately improve the quality of life for many persons with ASDs. This expert panel has addressed considerations in the diagnostic evaluation of gastrointestinal symptoms in individuals with ASDs that may lead to effective treatment options, with the hope that patients will have better access to enlightened care."

"Enlightened care." I like the sound of that.

Thursday, December 31, 2009

More "Good" News About Cell Phones . . .

I'm pretty sure I've mentioned the problems with electromagnetic radiation (like that generated by high voltage towers, cell phones and microwave ovens) at some point in these blogs. Seems that there is research that demonstrates that electromagnetic radiation ("EMR") makes the blood brain barrier more permeable than it was meant to be. While none of these studies talked about autism, one must remember the theory that toxins that enter the brain may have some relationship to autism spectrum disorder. It's not too much of a stretch to think that if the blood brain barrier has been compromised, potential substances and/or toxins that might never have reached the brain are now getting in and causing damage.

Recently, there was a study out of Europe that found that constant exposure to cell phones adversely affects bone density.

Now, the state of Maine is considering requiring that cell phones carry warnings that they might cause brain cancer. In an article entitled Maine to consider cell phone cancer warning, Glenn Adams reports that

"A Maine legislator wants to make the state the first to require cell phones to carry warnings that they can cause brain cancer. . . .

The now-ubiquitous devices carry such warnings in some countries, though no U.S. states require them, according to the National Conference of State Legislators. A similar effort is afoot in San Francisco. . . .

Maine Rep. Andrea Boland, D-Sanford, said numerous studies point to the cancer risk, and she has persuaded legislative leaders to allow her proposal to come up for discussion during the 2010 session that begins in January, a session usually reserved for emergency and governors' bills. . . .

While there's been no long-term studies on cell phones and cancer, some scientists suggest erring on the side of caution.

Last year, Dr. Ronald B. Herberman, director emeritus of the University of Pittsburgh Cancer Institute, sent a memo to about 3,000 faculty and staff members warning of risks based on early, unpublished data [what did this research say, and why is it unpublished??]. He said that children should use the phones only for emergencies because their brains were still developing and that adults should keep the phone away from the head and use a speakerphone or a wireless headset.

Herberman, who says scientific conclusions often take too long, is one of numerous doctors and researchers who have endorsed an August report by retired electronics engineer L. Lloyd Morgan. The report highlights a study that found significantly increased risk of brain tumors from 10 or more years of cell phone or cordless phone use.

Also, the BioInitiative Working Group, an international group of scientists, notes that many countries have issued warnings and that the European Parliament has passed a resolution calling for governmental action to address concerns over health risks from mobile phone use.

But the National Cancer Institute said studies thus far have turned up mixed and inconsistent results [which obviously means that some studies do show that cell phones cause harm], noting that cell phones did not come into widespread use in the United States until the 1990s.

'Although research has not consistently demonstrated a link between cellular telephone use and cancer [again, by definition, that means that some research HAS shown a link between cellular telephone use and cancer], scientists still caution that further surveillance is needed before conclusions can be drawn,' according to the Cancer Institute's Web site."

This is pretty scary stuff. There is obviously research that shows a link between cell phones/cordless phones and cancer -- by the way, why haven't we heard about any of this? -- and even the scientist and researchers are worried.

And, we wonder why so many children are diagnosed with ASD today. It's not just the diagnostic criteria. We, as a society, have created this problem over the past three decades. It's the way we eat, what we eat, the chemicals, pesticides and toxins to which we expose ourselves. It's the way we live and raise our children.

Isn't it obvious? We really need to put our children's development, safety, and happiness before convenience, efficacy and economics.

Thursday, December 24, 2009

Well, It's Been Over a Week . . .

Well, it's been over a week and I'm still on track with both my marathon training and my blogging.

I have to admit that I did miss one day of training, but it wasn't my fault (don't I sound like a five year old?). There was this little bit of snow, and I had to spend a little while digging out. My oldest son went to work, so he was no help.

My youngest son offered to help, but for a price. He wanted five dollars to clear a path down the sidewalk. Recognizing a bargain when I see one, I jumped all over the deal. (I was tempted to squeeze a little more work out of him for the same price, you know, "throw in the walkway to the front door, and you got yourself a deal," but I didn't want to take advantage.)

I walked off to buy some coffee for Tina. When I came back, I found three feet of sidewalk cleared, and an exhausted young man panting, "I don't want to do this anymore . . ."

So, I finished it all off, packed up my gear to go to the gym to hit the treadmill, and guess what? The gym was closed. What nerve! I made the effort to come and they didn't even bother to show up. Don't these people know I've got some training to do?

Wishing everyone a Blessed Christmas and A Most Wonderful, Happy and Joyous New Year.
Rob

Wednesday, December 16, 2009

ADHD, Lead Exposure & Smoking -- "Shocking New Findings?"

My sister directed this AOL article to me: "Smoking, Lead Exposure Increase ADHD Risk," by Stephanie Booth.

In it, is the not surprising conclusion that children, exposed in utero, to tobacco smoke and/or lead, had a statistically higher risk of being diagnosed with ADHD. Specifically, "children exposed prenatally to tobacco smoke had a 2.4-fold increased likelihood of ADHD diagnosis. Those whose blood showed what researchers categorized as high lead levels were 2.3 times more likely to have ADHD. Exposure to both lead and prenatal tobacco triggered what head researcher Tanya Froehlich, M.D., a developmental and behavioral pediatric specialist and assistant professor of pediatrics at Cincinnati Children's Hospital Medical Center,called an alarming 'synergistic effect.' Children in this category had eight times the risk of being diagnosed with ADHD."

I say these "findings" are "not surprising" because, as I've been saying for many years, everything from a ADD (and even speech and language delays that eventually lead to further diagnoses) to full blown autism are probably caused by the same thing ? a genetic predisposition to harm and an exposure to one or more environmental insults. The only thing that varies is the severity and manifestation of harm.

Throw in societal "insults," e.g., over exposure to television, video games, computers (both in terms of content, format & presentation, and the devices themselves), and poor eating and nutrition, and you have a perfect recipe for brain and nervous system development problems.

I think it interesting that science can find links to ADHD and ASD etc., but they can't find "the cause." Why? Well, if you want my humble opinion, no one will ever find "the cause" because there probably is no single cause. The combination of factors ? exposure to environmental insults, the timing of that exposure, the extent of that exposure, the nutrition/eating habits of the mother and child (before, during and after pregnancy (if breast feeding), breast feeding habits, vaccination issues (timing, content, number), exposure to smoking, lead, mercury, airplane fuel, electromagnetic radiation, etc., childrearing practices, and media exposure. The list goes on and on.

Who could possibly device a test for all these things and the infinite combinations possible? And, note, the combinations are worse than the sum of the parts.

Worse, and I hate to say it, who really wants the truth? I mean, what happens if someone definitively proves that vaccines really do cause harm? Or overprescription of antibiotics? Or exposure to cell phones, microwaves, Wi-Fi? Or too many video games? Or that fast food, convenience foods, genetically engineered foods, baby formula, is actually harmful?

Can we, as a society, deal with the economic impact of such findings? Are you ready to give up your cell phone?

So, instead of pouring resources into the Sisyphean Task of finding "the cause," why not focus on prevention and treatment. Admit that there is potential danger out there. Take steps to minimize the risks these children face. And, figure out a way to reverse the damage.

Monday, December 14, 2009

Boston Marathon

I didn't think I'd run another marathon, but today starts my official training for the 2010 Boston Marathon.

Why am I doing this?

Partially because I can. What I mean is, I'm allowed to run the Boston Marathon. You see, you have to qualify for Boston, and somehow, I managed to do so this year when I ran the Long Island Marathon. (Why did I run a marathon in the first place? See my 6/23/09 post). It was gruelling, and I didn't think I'd ever want to run another one, but some things happened to change my mind.

First, a lot of real runners, when they heard I qualified for Boston, told me I HAD to go.

That, alone, wasn't enough to convince me.

I ran a couple of more races -- much shorter races -- and, I managed to take home a second place and third place medal. Yeah for me!

Not bad for an old man. I'm actually having more success running now than when I ran track in high school. . . .

Then I read a couple of books -- Chi Running by Danny and Katherine Dreyer, and Run Fast by Hal Higdon. I realized that I had been severely over-training. Me, over-training, imagine that . . . .

Anyway, I got a hold of a Hal Higdon marathon running plan (Advanced version -- why completely stop torturing myself?). Liked what I saw. Tried it out. And, you know what? Not so bad.

I also, somehow, managed to forget the pain of training for, and running, the Long Island Marathon.

But most importantly, I still feel like I have something to prove to myself. I really want to do this.

So, here we go again. One workout down -- 89 to go.

Motivation

How do you motivate a child that refuses to be motivated?

What is wrong with my daughter?

I work with all sorts of kids whose parents tell me that their kids will never do that which I ask, and yet, time and again, we get them to work. And work hard.

Why can't I do that with my own kids?

When Robert was young, it was tough to get him to listen, but he had an excuse or two. So did Tina and I. Much of Robert's issues was simply beyond anything Tina and I could handle.

When things got better for Robert, it was still tough to get him to do everything we asked, but at least he tried. While he never really pushed hard to excel in school (Whenever I told him he had to study more, he would tell me he did study. I said there's a difference between studying and studying more.), he did manage to get by and do reasonably well.

We weren't that worried about him, though. When he was interested in something, he worked hard at it and did well. We saw him do that with fencing, and guitar, and bass, and his band, and his artwork.

He even got into his first choice college.

Enter my daughter, Katherine, now a senior in high school.

What can I say about Kat? She's a beautiful, talented, gifted, carefree, underachieving, social butterfly. Unfortunately, she is the daughter of two average, overachieving, high strung perfection seeking homebodies.

She's gifted in math. She's got a great eye with the camera. She has a beautiful voice and took to piano and violin with surprising ease. She's strong and coordinated. And, she can bake (best chocolate chip cookies I ever had!)

Does she do any of these things? No.

Is she excelling in school? No. Most mornings, I have to threaten her with grounding just to get her to class on time.

Also, one more call from a teacher or one more progress report about missing assignments or homework, and she's really in for it.

Is she looking for a college? If she is, she's doing it very secretly.

How does she spend her time? Hanging with her friends, Dunkin Donuts, cell phone, TV and an Ipod.

We talk, we urge, we argue, we yell. She tells us that "it's just the way she is." School's not that important to her. She doesn't understand why we're so upset.

She's killing us.

But, maybe she has a point.

She is having fun, and she does seem happy, and man, does she have a lot of friends. In fact, she brings all her friends together. She's their focal point.

She looks at us, and sees the stress. Raising three kids, keeping the house together, both of us working, Tina with two jobs, me hustling to keep the business going. We hardly ever go out. Always fixing, always cleaning. Kat tells us we should go do something "romantic" (usually when we're telling her to do some chores).

I'm not complaining. I think I have a great life, and God knows I've been blessed, but sometimes I wish I could just turn off my mind sometimes. I'm always worried about what needs to be done. I always have two or three lists going. Nothing I undertake is ever just "good enough."

Maybe Kat has a point.

I was pretty miserable in high school. All honors, AP classes, and sports. I went to practice right after school, and then to the library for a couple of hours. Dinner, a little more work, and then bed.

I did graduate as the class Valedictorian. Not that it got me much of anything, but I'm sure it helped with my college applications.

And, I did well in college. Worked all the time because I was convinced I got in by accident. I was miserable for two years, but I did maintain a 4.0 for my first three semesters at Brown. . .

I had a disastrous end to my second year -- lots of personal issues, and an absolutely killer final exam schedule, and I lost the 4.0. But, it made me think. Maybe I was working too hard. Maybe I should take it easy and enjoy the college experience more.

I did. My grades went down a bit (I still managed to graduate magna cum laude), but I had a lot more fun. And friends, too!

Maybe Kat has a point.

I'm worried for her in a way. I want her to do well. I want her to go to college and enjoy it. I want her to do well in life.

But, in another way, I am supremely confident in her. She is simply too bright and too strong to let life pass her by.

I know one day she will find her passion. I would love to be there when it happens.

Sunday, December 13, 2009

Another Long Delayed Post -- and a promise . . .

Well, it's been a while since I blogged about anything. There are a couple of reasons for this. First, I'm not sure that anyone is actually reading these things. Yes, I know that at least one person out there is following this blog, and whoever you are, a sincere "THANK YOU!"

But, much to my chagrin, I learned that even my dear wife, Tina, doesn't read my blog.

We were watching "Julie & Julia" (or is it "Julia & Julie"?) last night, and she turns to me and says, "you should blog for your business." To which I replied tersely, "I do."

"Oh," she said, "how do I find it?"

Ah, it's nice to know she cares.

Second, I feel like I must sound like a broken record. "Vaccines are bad." "The pharmaceutical companies are bad." "Meds are bad." "Nutrition is good." "Exercise is good." Blah, blah, blah.

Doesn't everybody know this already? And, if you don't, why would you listen to me?

Finally, this is all a bit discouraging. I LOVE my job. I love working with the kids. I love the creative process of designing and refining programs. I love writing. I love learning about this stuff. I love my staff, and the families with whom I work. I love seeing the progress my kids make.

Tina and I saved our son, Robert. I wrote a book about it. It is a good book that was almost published -- twice. But, both deals never fully materialized.

I wrote children's stories. I almost had a top-notch New York Agent represent me. But, that fell through, too.

I have a tremendous program that works. My kids get better!!

I thought that if I built a better mouse trap, the world would beat a path to my door.

I did. The world didn't.

I have discovered an ugly truth about business. It's not what you sell, it's how you sell it.

Ridiculous products, marketed correctly, sell. Pet rocks? Ginsu knives that can cut a can? Snuggies -- you know, the robe you put on backwards?

But, even the best products, marketed poorly, fail. Beta Max anyone?

Unfortunately, I am not a good salesman. I know this. I am an educator. Tina says I'm an advocate. I know my stuff. I am honest. I don't promise people miracles -- although sometimes miracles do happen . . .

That brings us to today. I've got a great program, but not nearly enough students. I like to write, but I've got no publisher. I've got things to say, but no one to say them to. I want to learn more, but who will teach me?

I am truly not sure what to do. But as Willie Mays said, no matter how good or bad things are, you just gotta keep on swinging.

So, I'll keep going.

And, I promise to start blogging regularly. At least once a week, even if I've got nothing to say.

Let's see where this leads . . .

PS For those interested in some good stuff on healthly living, nutrition, and natural medicine, check out Dr. Mercola's site www. mercola.com.

Till next time, be well.