My Kid is a Damn Nutter

[BigV]

Originally Posted by glatt

Reminds me, I was just reading about some woman who is working hard to get camel milk introduced to the USA. Apparently there would be decent market for it in the immigrant communities. And it's supposed to be extremely healthy so it might catch on elsewhere. She just has to go through a bunch of government red tape first.

from the WSJ

RALEIGH, N.C. -- Millie Hinkle first tasted camel milk in the United Arab Emirates about 10 years ago. She had no idea the salty drink, still warm from the camel and served in an ornate bowl with a side of walnuts, would become an obsession.

"It has taken over my life," said the 57-year-old practitioner of natural medicine as she cruised down a tree-lined road here in her white SUV emblazoned with a camel.

In some countries, camel milk is called "liquid gold" for its healing and nutritional qualities. But camel dairy is not widely available in the U.S., in part because the animals don't like to be milked. Lauren Etter reports from Raleigh, North Carolina.

Ms. Hinkle has drained her savings, slashed the number of hours she spends at her day job and started a company called Camel Milk USA. Her goal is to bring the milk, reputed to have healing and aphrodisiac powers, to the U.S. where it's been hard to get mainly because camels weren't listed in rules governing the sale of milk.

Still warm from the camel? *ack* I think I'd have to warm up to that a bit myself.

[Clodfobble]

Wiki definition of apraxia, a common symptom associated with autism.

1. SCIENTIST FIRST TO CHARACTERIZE NOVEL SYNDROME OF ALLERGY, APRAXIA, MALABSORPTION

Newswise — A landmark study conducted by Children's Hospital & Research Center Oakland is the first to reveal a new syndrome in children that presents with a combination of allergy, apraxia and malabsorption. Autism spectrum disorders were variably present. Verbal apraxia has until now been understood to be a neurologically based speech disorder, although hints of other neurological soft signs have been described. The new study, led by Children's Hospital & Research Center Oakland scientist and pediatric emergency medicine physician, Claudia Morris, MD, and Marilyn C. Agin, MD, a neurodevelopmental pediatrician at Saint Vincent Medical Center in New York, however, suggests that the symptoms of verbal apraxia are, at least for a sub-group of children, part of a larger, multifactorial, neurologic syndrome involving food allergies/gluten- sensitivity and nutritional malabsorption.

"While it is critical to treat verbal apraxia symptoms that often include severe delays in expressive speech production with speech therapy, we need to start asking why these kids are having these problems in the first place so that we can identify mechanisms we can actually target to treat the cause of the symptoms," says Dr. Morris.

Published in the July/August issue of Alternative Therapies in Health and Medicine, the new study takes a major step toward identifying the potential mechanisms that may contribute to apraxia symptoms. In the study, Dr. Morris collected information from nearly 200 families with children who suffered from verbal apraxia in order to better characterize the symptoms and metabolic anomalies of a subset of children. The data clearly demonstrated a common cluster of allergy, apraxia and malabsorption, along with low muscle tone, poor coordination and sensory integration abnormalities. In addition, Dr. Morris was able to gather laboratory analyses in 26 of the children, which revealed low carnitine levels, abnormal celiac panels, gluten sensitivity, and vitamin D deficiency among others.

All children genetically screened carried an HLA gene associated with gluten sensitivity and celiac disease. "The sample size is still small and should be interpreted with caution," says Dr. Morris. "However this is of particular interest given the recent publication by Eaton and colleagues in the July 6 online edition of Pediatrics demonstrating a greater than 3-fold risk of autism in children born to mothers diagnosed with celiac disease. This brings some credibility to the anecdotal reports of gastrointestinal and behavioral improvements in children with autism spectrum disorders and/or verbal apraxia when eliminating gluten from their diets. Although the implications of these observations remain to be determined, this association and the utility of dietary modifications warrant further investigation, particularly if we can identify a genetically vulnerable group".

Most significantly, the data indicate that the neurologic dysfunction represented in the syndrome overlaps the symptoms of vitamin E deficiency. While low vitamin E bioavailability may occur due to a variety of different causes, neurological consequences are similar, regardless of the initiating trigger. The study suggests that vitamin E could be used as a safe nutritional intervention that may benefit some children. Growing evidence support the benefits of omega 3 fatty acid supplementation in a number of neurodevelopmental disorders. Anecdotally children with verbal apraxia will often demonstrate leaps in their speech production when taking high-quality fish oil. The addition of vitamin E to omega 3 fatty acid supplementation in this cohort of children induced benefits that exceeded those expected from just speech therapy alone, according to parental report.

"While data from a case series is by no means conclusive, the results clearly point to the need for further attention to this poorly understood disorder, and a placebo-controlled study to investigate the potential role of vitamin E and omega 3 supplementation in this group of children," says Dr. Morris.

She points out that it is equally important for children given an apraxia diagnosis to receive a more comprehensive metabolic evaluation than what is current practice. Many of the nutritional deficiencies like low carnitine, zinc and vitamin D are easily treated. By not addressing the nutritional deficiencies, the child will continue to suffer from significant medical consequences of those deficiencies. The first step is to identify and treat the deficiencies. The next step is to try to figure out why they have these deficiencies and a fat malabsorption syndrome in the first place. However, Dr. Morris does advise families to work closely with a physician rather than trying promising but unproven interventions on their own.

In the mean time, however, Dr. Morris's study provides the essential foundation for identifying the children who may need these treatments.

"By identifying these early red flags of the syndrome, we've provided a way to get these kids treatment at the earliest possible moment. While 75 percent of the time kids identified as late bloomers really are just that, 25 percent of the time there is a true pathologic condition. To miss it is to miss critically valuable time for early intervention. If a child has all these symptoms, chances are they are going to fall into the 25 percent who have a condition that needs further evaluation and treatment."

ABOUT CHILDREN'S HOSPITAL & RESEARCH CENTER OAKLAND

Children's Hospital & Research Center Oakland is Northern California's only freestanding and independent children's hospital. Children's is the leader in many pediatric specialties including neonatology, cardiology, neurosurgery and intensive care. The hospital is a designated Level 1 pediatric trauma center and has the largest pediatric critical care facility in the region. Children's Hospital has 190 licensed beds, 201 hospital-based physicians in 30 specialties, more than 2,611 employees and an operating budget of $312 million. Children's research arm, Children's Hospital Oakland Research Institute, is internationally renowned in bridging state of the art basic science and clinical research for the treatment and prevention of human disease. With about 300 staff members and an annual budget of approximately $50 million, CHORI is ranked among the top ten research institutes in National Institutes of Health funding to children's hospitals. CHORI is a leader in translational research, providing cures for diseases, developing new vaccines for infectious diseases and discovering new treatment protocols for previously fatal or debilitating conditions such as cancer, sickle cell disease and thalassemia, diabetes, asthma, HIV/AIDS, pediatric obesity, nutritional deficiencies, birth defects, hemophilia and cystic fibrosis.

[Clodfobble]

A new study against the dietary treatments puts a rather desperate spin on things:

The frequency of GI symptoms was about 77 percent in the autism group and 72 percent among the others, not considered a statistically significant difference.

However, almost 34 percent of the autistic children, compared with nearly 18 percent of the others, had constipation.

Apparently constipation isn't a GI symptom anymore.

Those differences could stem from what the researchers called neurobehavioral issues connected with autism, such as the ritualistic practices, they said.

"Many patients with autism insist on eating the same thing and might not consume enough fiber," said the study's lead author, Dr. Samar H. Ibrahim, a fellow in gastroenterology and instructor in pediatrics at the Mayo Clinic. "We think this may be contributing to the constipation."

So, wait, they are hardcore self-selecting themselves to specific foods (you know, wheat and dairy--never in the history of autism or childrearing in general has there been a kid who self-selects himself to broccoli) and this is leading to constipation. Thus, getting them to eat different foods would relieve this constipation. That sounds like... getting them to eat different food would be a good thing?

"For me, this study lends support to the recommendation I make to a lot of families that there is no evidence to support restricted diets," she said. "They're dangerous and risky."

I'm sorry, what? It's dangerous and risky to make my child eat fruits and vegetables instead of bread and cheese? This shows how desperate people are getting--the one thing doctors have always conceded is that there is absolutely no harm in trying the diet. The only meaningful nutrient you might miss is calcium, and the reality is most normal kids don't get enough calcium either, which is why calcium supplements come in fucking gummy bear format. I saw an NBC medical correspondent make a complete fool of herself with her insistence that this "proves it," "case closed," "there is absolutely no link, we've proven it." Real scientists know one study is just one study, and you never ever call something definitively closed. That is the purpose of science, to constantly search for more information and new ways to look at it.

How many old studies exist that prove no link between smoking and cancer, I wonder?

[Flint]

So are they now saying that the case is definitively closed on children in general eating a more healthy diet being a good idea ???

[Pie]

The frequency of GI symptoms was about 77 percent in the autism group and 72 percent among the others, not considered a statistically significant difference.

Originally Posted by Clodfobble

Apparently constipation isn't a GI symptom anymore.

Just to be the devil's advocate, it sounds like they're saying the frequency difference was not statistically significant. The fact that more of those "symptoms" were constipation (rather than diarrhea, etc.) in the autism group was significant.

[Flint]

At issue is what they intended "However," to mean.

[Happy Monkey]

It sounds to me like they are saying that a symptom of autism, strong preference for routine, specifically in food choice, is causing the constipation. I doubt they'd caution against enforcing a varied diet, as opposed to a restricted one. "Not just bread and cheese" is different from "no bread or cheese". Though I do know that it can be hard to get a child to eat something else if they know that what they want is available.

Without calling out any particular restricted diet, they can be dangerous and risky (though that's an extreme case), meaning you have to be very careful when using them, not that you should never use them. Without evidence supporting a link between diet and autism, and with the possible danger of a poorly crafted restricted diet, they reccommend against.

Edit: I do wonder whether the 77-72 GI number includes the 34-18 constipation number.

[Clodfobble]

From HM's link:

A vegan couple were sentenced Wednesday to life in prison for the death of their malnourished 6-week-old baby boy, who was fed a diet largely consisting of soy milk and apple juice.

“No matter how many times they want to say, ‘We’re vegans, we’re vegetarians,’ that’s not the issue in this case,” said prosecutor Chuck Boring. “The child died because he was not fed. Period.”

He was six weeks old, and they were (apparently) giving him soy milk instead of soy formula, which are entirely different substances, yet both are vegan. I know from experience that it says right on the box of soy milk--and every other milk substitute on the market--that it is not intended for use as a baby formula. It was not the vegan diet that killed him, it was his retarded parents.

"Without calling out any particular restricted diet" is disingenuous because there are only three major diets that are recommended for autistic children: gluten-free/casein-free, Specific Carbohydrate (whose chief difference from GFCF is it allows non-cow milks,) and Feingold (which removes nothing but artificial additives, colors, flavors, and preservatives.) Your average experimental parent is not fashioning some diet out of their ass, they are following one of these three.

Originally Posted by Happy Monkey

It sounds to me like they are saying that a symptom of autism, strong preference for routine, specifically in food choice, is causing the constipation.

Routine food choices do not by themselves equal constipation. My son still eats about ten foods or so pretty much every day, but his digestion is no longer a problem. The majority of people on this planet rely on staple foods that they eat at every meal. It is what one routinely eats that causes (or does not cause) constipation.

[Clodfobble]

Originally Posted by Happy Monkey

Edit: I do wonder whether the 77-72 GI number includes the 34-18 constipation number.

I also wonder how they classified the strength of the symptoms. My stepson has constipation at least once a month. That is not the same as a child who has chronic, daily constipation with visual bloating and distension of the stomach.

[Clodfobble]

And another one has just come out in the UK. Once again, the authors conclude there is "no link" despite their own data showing that

There were some children who began to have more stools per day at 30 months of age, but that "may be a secondary phenomenon related to differences in diet," the authors note.

Nevertheless, Emond noted that some older children with autistic spectrum disorders do have bowel symptoms. "It is not clear whether these symptoms are due to dietary changes or abnormalities in intestinal function associated with autism. Further research is needed."

Oh, but the professor who ran this study? He's a British vaccine official.

This actually gives me great hope. If they are running at such a fever pitch to prove what they already assume to be true, and this is the best they can come up with... it is a tacit acknowledgement that they are losing the battle.


It's by no means certain, but there are two representatives in Congress (Rep. Chris Smith R-NJ, and Rep. Carolyn Maloney D-NY,) who are pushing extremely hard for a special hearing on the autism epidemic in front of the Energy and Commerce committee before the new health care bill can be passed. This could come to a head even sooner than I'd expected.

[Clodfobble]

Oh, and thanks a ton to you guys who helped contact Nancy Pelosi a few days ago:

Dear Autism Advocate,

Thank you so much for all of your hard work over the last few weeks as you have continued to call, email, and fax Speaker Pelosi’s office.

THIS JUST IN!...House Speaker Nancy Pelosi has heard you loud and clear! We are now in a very constructive dialogue with the Speaker's office about the importance of ending autism insurance discrimination.

Thank you again for your patience, your perseverance and for recruiting your friends and family to make these calls.

[xoxoxoBruce]

Beat me to it.

[Griff]

Me too! Apparently my email went through despite the system issues.

[OnyxCougar]

Clod, I've been reading this thread and following the food blog, and I have a question:

Can one be on a GFCF diet AND go low carb?

I'm noticing rice, beans etc in the diet, and I can't eat those, because I'm insulin resistance diabetic. (And if I'm going to go GFCF for the autistic cub, EVERYONE is.) I just don't know how I can go low (under 150g a day) carb with this stuff.

[Clodfobble]

I wouldn't think it would be too hard, most carbs are already eliminated on the diet in the first place. Is corn okay for you? Rice and corn are the main grain substitutes in pre-packaged items, but when you're cooking things yourself there are a ton of flour options--garbanzo/chickpea, amaranth, quinoa, teff, tapioca... I don't know if any of those are low-carb or not. But really, there's nothing that you have to eat on the diet, only things that you have to avoid. Meat, fruits and veggies are really what it's all about. If you're following a super low-carb diet, you're probably already eating most of the right stuff already, you'd just have to eliminate dairy.