Twas the Night Before Christmas, Autism Style

So I meant to post this last night but ran out of time. This is a repeat, I copied and pasted it from my blog from last December. But, I am going to repost this for those who have not read it. For many of us affected by Autism, many of these things will ring true. So here's to each and every family out there affected by Autism. Wishing you the joys of watching your child experience this Christmas, peace in your heart and the every growing love you experience from parenting your very special kiddo!

Poem by Cindy Waeltermann of Pittsburgh, PA
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Twas the night before Christmas
And all through the house
All creatures were stirring
Yes, even the mouse

We tried the melatonin
We gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When a nightmare of terror
Ran through my own head

Did I get the right gift
The right color and style
Would there be a tantrum
Or just maybe, a smile ?

Our relatives we will see
But they don't understand
The pleasure he gets
From flapping his hands.

"He needs discipline" they'll say
"Just a much needed smack"
"You must learn to parent"
On goes the attack

We'll just smile and nod
Because we know deep inside
The argument is useless
Our anger we will try to hide

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, and regressions.

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first story !
He didn't cause a scene !

He peed in the potty
Who cares if he's ten
He stopped saying the same thing
Again and again.

Others just don't realize
Just how we learn to cope
How we barely hang on
To the end of our rope.

What they don't see
Is the joy we won't hide
When our child with autism
Make the tiniest stride.

We sometimes look at others
Without the problems we face
With jealousy, and envy
Longing and even distaste

But what they don't know
Nor sometimes do we
Is that a child with autism
Brings simplicity

We don't get excited
Over expensive things
But we jump for joy
With the progress hard work brings

A child with autism
Tries hard every day
That makes us proud
More than words can say

They work even harder
Than you or I
To achieve something small
To reach their star in the sky

So to those who don't get it
Who don't have a clue
Take a walk in my shoes
And I will assure you!

After ten minutes
Into your walk
You'll look at me
With respect, even shock

You will then realize
Daily what is it I go through
The next time you're tempted to judge
I can assure you

You won't say a thing
You'll be quiet and learn
Like the years that I did
When the tables were turned

Here's to 2009.....

It is hard to believe that this could be one of the lasts posts for this year. I like to reflect on life during the holidays and appreciate how far we have come and what this past year has brought. This past year we've had the blessing of losing Matthew's school diagnosis and his entrance into a mainstream Kindergarten program with the love of a wonderful teacher. It has been an eventful year for sure. Lots of hard work and our fair share of challenges but I think we've grown as a family in our health, understanding of Autism and our love for each other and our journey on this earth. I have tried to make my blog something that everyone can get something out of, even if you do not have a child with Autism. Although I would never wish for my son to have to face what he has in his short life, I appreciate this journey for what it has given to my family as a whole. Had we not received an Autism diagnosis for our son, we would not have had to learn all we have about the immune system, the process of inflammation which is the underlying issue in just about all disease and the impact our diet has on our health, and so for that I am grateful for this journey.

I have also been blessed with many other Autism moms, dads, families in general as well as the practitioners in this fight against Autism whom I have come to call friends and partners in our family's process of healing our son. Thank you for your shoulder, your wisdom, your companionship in this process, it means the world to me. I look at what we did this year like attending our first parade as a family. Wow, such a small thing for many and yet for a family with a child with Autism this could have been disastrous. This was the first year where I was not concerned he would dart off into the traffic, wander off to be kidnapped, have a meltdown two minutes in, etc. Rather he sat in the front, right along the parade route waving, high fiving and catching the candy thrown (of course mom confiscated all but a candy cane or two!). But incredible progress for a boy who would have had to be carried to the car kicking and screaming years before at such an overwhelming sensory experience.

We've had our share of meltdowns over change, just last week as a matter of fact so I won't mislead you into thinking we are perfect, whatever that is. But, I must appreciate the fact that 3 short years ago my son was not speaking and now he is close to losing speech therapy because of his progress. We have much to be thankful for (as this is my Autism related blog I will not go into the full gamut of our family events for the year but suffice it to say the rest of the fam had a great year and is blossoming as well!). We can operate much like other families and that in itself is something to celebrate. The holidays can be so challenging for children with Autism, so many new things, routines disrupted, school activities, dietary challenges, visitors or taking trips to see others, the list goes on and on. Even for neurotypical children it can be taxing but for a child with Autism, it can be monumental and cause meltdowns and regression. I look at my son and I am so proud of how hard he works each day. The things that come easy to other kids his age take tremendous effort. I still see how hard it is for him to pay attention when his environment is loud or there are too many things going on. I can see his brain working and trying to take it all in and prioritize what needs to be listened to and what ignored (like the air conditioning sounds that used to completely envelope his focus back in preschool). Things that we can ignore as background noise used to become his whole focus. We must appreciate each small step our children make.

This club, Autism, is not one that many of us would choose to be in, but unfortunately our numbers are growing. Until we all wake up and realize our toxic world from food, cleaners, pesticides, over vaccination, etc. makes a huge impact on our bodies, this number will only continue to rise. It is now less than 1 in 100 children will be diagnosed with Autism, more than any other childhood disease. Trust your instincts as a mom, find a practitioner who can help you. Everyone knows by now I support Dr. Kurt Woeller and recommend him to anyone. He has helped my family more than I can ever say and I will always be in his debt. He has also offered me the opportunity to work for him in a small capacity this year which only continues to enrich my own knowledge base of health, Autism treatment, the immune and neurological systems so of course I jumped at that chance! And, find another mom who can help you. Autism is treatable and kids can get better. I am always happy to help other families getting started on a biomedical approach. It helps to have a mentor or a partner who has "been there, done that". Often no one can understand the overwhelming emotions that come from raising a child with Autism like another Autism parent. You are often left frustrated, angry that your child has to go through this, stressed, financially impacted, and grieving for the life you dreamed for your child and the fact that it may not be what you planned for at all, especially in the early years after diagnosis. But, there are many, many bright sides (and yes, it can take a few years to realize that so don't feel bad if you aren't there yet). Watching our children master a skill that seem impossible, hearing those beautiful first words, at ANY AGE, and YES potty training (it will happen, I promise), eating a new food, and the one I NEVER tire of, hearing your child say "I LOVE YOU MOM" without any prompting. Those are the things that keep us going when we don't feel we can and keep us striving to try new things.

So in the new year look for more informational posts through my, I still have much from the DAN! conference to post and have not yet had the time. And, hopefully I will have another endeavor to share with you all, a book which I am co-writing with someone near and dear to me. But, I am going to leave that a mystery until the time comes. But, you will love it, have to have it and it won't just apply to Autism (at least that is our hope!). So from our family to yours, Merry Christmas, Happy New Year and many blessing to you and your family during this holiday season!

GFCF Gingerbread cookies

So, it is that time of year again, baking time! When my son's kindergarten teacher asked for volunteers to make the Gingerbread Men for their annual hunt for the Gingerbread man I immediately volunteered. I like for him to have what "everyone else is having" as much as possible. I don't like for him to always have his "special" treat. So whenever I can do something gluten, casein and soy free that I know everyone will love, I like to do that. This recipe, in my opinion, tastes just like traditional Gingerbread made from wheat. We used this last year and the kids loved it. This year was no exception, the kindergarteners loved them, so did the teacher and the other parent helper.


¾ cup Ghee
¼ cup molasses
1 cup brown sugar
3 cup gluten-free flour mix*
1 teaspoon xanthan gum
1 teaspoon salt
1 Tablespoon baking powder
2 teaspoon ground ginger
¼ teaspoon ground cloves
½ teaspoon ground cinnamon
1/8 teaspoon ground nutmeg
½ cup water
Rice flour for rolling

Cream margarine and sugar. Beat in molasses. Sift dry ingredients into separate bowl. Stir into creamed mixture alternately with water (I did not need all of the water, I just added until the dough started to pull away from the side in one big clumo). Mix thoroughly once everything has been added. Dough should be soft and will be sticky. Refrigerate dough for at least one hour. Using rice flour, roll portions of dough on parchment paper to about ¼. Cut and decorate as desired. Bake in 350F oven for 8-20 minutes depending on size. Cookies should just be getting browned. Bake longer for crispier cookies. Cool slightly on sheet before removing to rack to cool completely. Store in airtight containers.

* the GFCF mix I used was:

6 cups rice flour
2 cups potato starch
1 cup tapioca starch

Vote for ACT! Today.

Help a great organization by voting for them in the Chase Community Giving Program. Sign into your Facebook page and search Chase giving. Become a fan and then search for ACT TODAY and vote for them. They provide grants for families who need financial help to do biomedical treatments for their children with Autism.

Research on the role of oxytocin in Autism

Susan Owens has been instrumental in pointing out the importance of sulfation chemistry which has been vital information for the Autism and Alzheimers communities. I have blogged before about the role of sulfation in oxytocin production and reading her account of her labor was like reading my own story. It showed me that my own sulfation chemistry was faulty, I did not go into labor on my own and had several issues all potentially stemming from lack of oxytocin production. Since I did not go into labor on my own, I was induced and had 20+ hours of pitocin. As I have met other Autism mommies and we've shared our birth stories, it has been pretty interesting to hear that many of them shared my story in many ways. Now there is research to show the similarities in the rise in pitocin use and the rise in Autism rates and the role that oxytocin plays in pair bonding (which would explain the social deficits our kiddos on the spectrum have). As we have supported suflation through epsom salts baths nightly and even epsom salt creams as needed, I have wondered how much that was helping. Now there is an therapy out there called Respen-A. It is homeopathic but does require a prescription. Dr. Woeller has said he will try this on a select group of his patients, namely ones with that social deficit. I have already emailed him to let him know our interest in having my son be one of those select patients, even though socially my son is indistinguishable from his peers! Then Dr. Shaw also posted on Autism Action Plan that the oxytocin receptors are not stable in children with low cholesterol. My son had low cholesterol until supplemented with Sonic Cholesterol from New Beginnings. Coincidentally, I too have had low cholesterol all of my life. So I think this is just exciting new discoveries into more ways we can help our kids. My son's progress is amazing and miraculous. The human body is so resilient and these kids can heal. My son's ability to function with most people unable to tell he has a diagnosis of Autism, when just a few short years ago it was very, very apparant. So click below to visit the website and read more about this interesting new therapy. You can click on Product Info and Science Overview for detailed info on the research behind this product. I will be sure to keep my blog updated once we begin this therapy.

http://www.neuro-med.net/respena.html

Metals found in kids/adults Halloween face paints

Here is an interesting article that may make you think twice about slathering on those face paints tonight before trick or treating. I know my son rec'd an actual chemical burn once from face paint applied at school for a performance. With our skin being our largest organ, absorption does occur with these types of products. Lead has been widely studied for its hazardous effects on developing brains. So, "Have a safe Halloween" takes on a new meaning with this report.

http://safecosmetics.org/downloads/PrettyScary_Oct2709.pdf

And as if you didn't have enough reasons to limit your child's candy consumption, read lower in the report where they talk about the FDA and the lead level limits for candy. Per this report, the FDA has set a level of .10 ppm in candy, not because that is the "safe" limit but because that is the lowest limit candy manufacturers can be reasonably expected to attain. Isn't that nice?! We aren't setting caps on toxins in our "food" (I use quotes because I don't really consider candy food but whatever) based on what the safety data is on these things but what is practical for the manufacturers to attain. Yet another reason to keep candy away from our kids, never mind the colors that are toxins as well, the sugar that jacks with their insulin production but we also have to worry about lead. No one really knows the long term effects of these metals in our kids' bodies. And most experts will at least agree that NO level of lead is safe.

New study on potent effects of Curcumin (Turmeric)

Curcumin or Turmeric has been a supplement my son has been on for months now. We tried a prescription anti-inflammatory and he reacted in one of the various additives in the pill form. Because that prescription medication was still under patent, we could not get it compounded without all the additives. So we decided to stop it and instead, turn to therapeutic Curcumin. Since then, we've seen amazing changes in his digestive system which relates to calming of the inflammation and also cognitively which tells me that it is also helping with his brain inflammation. And, I have recommended this remedy to two people with success in treating their arthritis/inflammation. All it took was a few doses of just 1 pill a day (my son's full dose is 2 pills, twice a day) to relieve their chronic pain and reduce swelling. My mother in law was able to do without her Cellebrex while here and the single dose of Turmeric was able to stop the throbbing pain that would wake her at night (even while on Cellebrex). I feel that most people could benefit from the anti-inflammatory properties of Curcumin and have started my husband on this remedy as well. So, I know first hand how potent Curcumin can be and am so excited to see research to validate what some of already know. Here's some research on the potential of Curcumin to kill cancer cells. Thank you Shari for sending me this!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Curry Spice 'Kills Cancer Cells
'related: Indian Curry 'Might Be Magic Cure-All'

October 28, 2009
BBC

An extract found in the bright yellow curry spice turmeric can kill off cancer cells, scientists have shown. The yellow spice gives curries their bright colour. The chemical - curcumin - has long been thought to have healing powers and is already being tested as a treatment for arthritis and even dementia. Now tests by a team at the Cork Cancer Research Centre show it can destroy gullet cancer cells in the lab. Cancer experts said the findings in the British Journal of Cancer could help doctors find new treatments. Dr Sharon McKenna and her team found that curcumin started to kill cancer cells within 24 hours.

'Natural' Remedy
The cells also began to digest themselves, after the curcumin triggered lethal cell death signals. Dr McKenna said: "Scientists have known for a long time that natural compounds have the potential to treat faulty cells that have become cancerous and we suspected that curcumin might have therapeutic value. "Dr Lesley Walker, director of cancer information at Cancer Research UK, said: "This is interesting research which opens up the possibility that natural chemicals found in turmeric could be developed into new treatments for oesophageal cancer. "Rates of oesophageal cancer have gone up by more than a half since the 70s and this is thought to be linked to rising rates of obesity, alcohol intake and reflux disease so finding ways to prevent this disease is important too. "Each year around 7,800 people are diagnosed with oesophageal cancer in the UK. It is the sixth most common cause of cancer death and accounts for around five percent of all UK cancer deaths.

FREE preview of Dr. Woeller's Autism Action Plan Saturday!

I have blogged many times about Dr. Kurt Woeller. He is my son's DAN! physician and the one who has lead us on the journey towards recovery from Autism with my son. He has a great website called Autism Action Plan where you get access to a DAN! doctor on the message boards, live video chats where you type in a question and he answers it live, and tons of educational info on the biomedical treatment of Autism. For the 1 year anniversary he is doing a free preview day. That means you get to access all of the educational materials, message boards and there will be 5 live video chats that day, including one featuring me! So join us for lots of information and fun and see just how valuable this site is if you are trying to help your child recover from Autism!

Here's the link: http://www.autismactionplan.org/members/autismactionplan/adminpages/freeopenhouse

Immune response to wheat

Sorry to my awesome blog followers, I have not fallen off the face of the earth, it just seems like it!! The weekend of the 3rd I was in Costa Mesa, CA for the TACA Real Help Now conference. What an AWESOME bunch of parents there. Loved that group to pieces and they had a phenomenal line up of speakers including Dr. Jerry Kartzinel and Dr. Doris Rapp.

October 9th - 11th was the DAN! conference in Dallas, TX. That was amazing as always. And it will fuel many blog posts. Ever since the conference I have been trying to find time to blog about it and pass on the latest and greatest.

We finally made some family time during fall break with a trip to the mountains camping last weekend. So, that is why there has been such a lack of posts. Between traveling and fall break, it has been quite busy!!

So on to the good stuff. Dr. Alessio Fasano is a professor of pediatrics, medicine and physiology and director of the Mucosal Biology Research Center and the Center for Celiac Research at the University of Maryland School of Medicine. He joined our New Beginnings dinner on Saturday night but I did not have the chance to speak with him there. What a pity because his talk on Sunday blew me away and changed how our family will eat from now on. He presented data on the immune response stimulated from wheat ingestion that leads to many common auto immune disorders we are seeing become more and more prevalent. I will skip the technical terms and put it this way, we were born eating nuts, seeds, fruits, veggies and some meats. People had to be nomadic because of that, moving to where they could get food. Once they discovered the secret of seeds, they learned to domesticate crops which allowed things like food storage and meant they could settle in one spot. Long, long before this was a recognizeable disorder, people were dying from this (more often small children). A Dutch Pediatrician named Willem-Karel Dicke noticed that a war-related shortage of bread in the Netherlands led to a significant drop in death rate amonth children affected by an immune response to gluten, from greater thank 35% to essentially zero! Once wheat was once again availabe, the numbers returned to previous levels.

So, how does gluten hurt us? When gluten is ingested, the body mobilizes an immune response, it thinks it is under attack. When the body is under attack, inflammation is generated at the site to aid in healing. When there isn't really an attack and there is prolonged exposure, you can see how this leads to chronic inflammation and bowel dysfunction so often seen in children on the spectrum along with people suffering from Celiac Disease (CD). The immune system harms healthy tissue in any attempt to destroy what they perceive to be an infectious agent. Why is this important? Eating this compound leads to impaired nutritional absorption. Poor iron absorption leads to anemia for example, poor folate uptake can lead to a variety of neurological problems. So, you can see how a person not acutely impacted i.e. without severe gastrointestinal problems like chronic diarrhea and persistant indigestion as a result of wheat exposure, can still be suffering from some form of CD, however slight. Many people DO have a strong response and suffer with chronic GI distress. The estimate is that 1% of the population has this immune response to wheat ingestion, 100 more times common than previously thought. The study that was done looked at 13,000 people and found 133 apparantly healthy subjects were affected! Many times the inflammation is mild and only a small segment of the intestines is dysfunctional. But, inflammation is inflammation and on a chronic basis = no good. We are seeing a dramatic rise in auto-immune related and inflammation related disorders. Here is a great study to pinpoint how impactful our diet is in our health or lack thereof. We all need to sit up and take notice.

After the DAN! conference my whole family when gluten free, not just my son with Autism. He's been GFCFSF for years, now it is time for the rest of us. Another doctor spoke about skin conditions like eczema being a key indicator for leaky gut. I know all too well about leaky gut, this chronically inflammed gut that has been compromised and lets larger peptides through that would not normally be allowed. It creates chaos and havoc for a body and especially a young, developing mind and body. My daughter (and husband and mother in law) all suffer from very bad eczema. Ding, ding, ding, the bells went off. After just a couple of days without gluten my daughter and husband were significantly better. I even noticed a HUGE difference in how I felt after a few days gluten free and then an infraction. I thought I was going to be sick, all that after just a couple of days GF and then eating gluten again! And, this really needs to be driven home to those with kids on the spectrum, EVEN ONE BITE CAN HURT!!! I am not even talking about behavioral reactions. I know there are enzymes out there that are wonderful. They may help break down the proteins for ease in digestion but that is NOT GETTING AROUND THE IMMUNE STIMULATION THAT IS OCCURRING. I have heard way too many people at conferences tell me that they give their kids their "pizza" enzymes or "ice cream" enzymes. I have to tell you, I cringe when I hear that. I am a huge proponent of enzymes but after hearing this new info, it shows me that this immune activation is still occurring. So, if you are really trying to heal your child's (or your own) gut, complete adherence is necessary. You are stoking those fires of inflammation which is just contributing to more damage and auto-immunity. But the good news is that when this is found out early and a strict Gluten Free diet is adhered, the structure of the gut almost always returns to normal or close to it and the gastrointestinal symptoms disappear.

So there you go. You will be getting more GF recipes from me as we make gluten free living a larger endeavor in our house. I urge you to look at your own families and see if this could be an issue for you as well.

This article was published in the August 2009 issue of Scientific America if you'd like to read the full version.

Smart Choices? Define "Smart"

I just got this email from Food Democracy Now. It isn't surprising that once again these designations are being bought to fool people to think their processed food choices are good for their kids or themselves. Read more:

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Dear Terri,

Ever get the feeling that multinational food corporations are just trying to sell you a bunch of junk in a pretty package? Well, the new Smart Choices® Program proves that hunch to be true.

Recently, an alliance of over a dozen giant food conglomerates and some industry “experts” came up with a new nutrition labeling program meant to help consumers make “smarter food and beverage choices.”1 You might be surprised what they define as a “Smart Choice”: products like Froot Loops®, Keebler Cookie Crunch® and Lucky Charms®.

Are they serious? In an age when childhood obesity and type II diabetes has become an epidemic, labeling sugar cereals as smart choices is unacceptable. Please join us in telling the FDA and USDA to investigate the Smart Choices® Program and put an end to deceptive labeling.

http://fdn.actionkit.com/go/39?akid=23.1199._q4AcM&t=1

The new Smart Choices® label, a large, bright green checkmark, is starting to appear on packages of processed food across the country thanks to the help of major corporations like ConAgra, General Mills, Kellogg’s, Kraft, PepsiCo, Tyson Foods and Unilever.2 For only $100,000, a company can join the Smart Choices® program3 and “recommend” products that contain as much as 44% sugar to your children.4

This new label is a sign of everything that is wrong with food industry driven labeling programs.

According to Michael Jacobson, the executive director of the Center for Science in the Public Interest, the criteria for the new “smarter food” label is so low that: “You could start out with some sawdust, add calcium or Vitamin A and meet the criteria.”5

Jacobson, who was on the original panel of experts that worked to create the nutritional standards for the Smart Choices® program, resigned last September in disgust because the results were so far in favor of the industry.

Thankfully, the FDA and USDA have taken notice. The agencies sent a joint letter saying they would “be concerned if any FOP (front of package) labeling systems…had the effect of encouraging consumers to choose highly processed foods…”6 The letter is a good start, but The FDA and USDA need to do more. The Smart Choices program will encourage bad food choices if it's allowed to proceed. And the FDA and USDA have the ability to stop it.

Please sign this petition now and tell the FDA and the USDA that Froot Loops® is NOT a Smart Choice for our children.

http://fdn.actionkit.com/go/39?akid=23.1199._q4AcM&t=1

Thanks for all you do,

Dave, Lisa and the Food Democracy Now! Team

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Don't be fooled, read those labels, know what those ingredients are and what they do to a growing mind and body and leave them on the shelf. Remember, with cold and flu season upon us, sugar is a MAJOR immune depressant. Don't leave yourself open to infection by loading yourself or your kids up on sugar.

Vitamin D3 and protection against swine flu!

Anyone concerned with health and worried about the flu/swine flu needs to click this link and watch all 4 of the videos with Dr. Mercola interviewing Dr. Blaylock.

http://articles.mercola.com/sites/articles/archive/2009/09/19/The-Truth-about-the-Flu-Shot.aspx

They shed light on this big scare tactic about swine flu but they offer practical advice to protect yourself! Once bit of advice is to make sure you get your vitamin D and specifically D3. It will help you immune system and with the whole overblown issue about sunscreen, most people are now deficient in vitamin D. You need 15 minutes of strong sun exposure - without sunscreen - to get adequate amounts. So, if you are not getting that, you should look into a supplement, it will definitely boost your immune system.

And, Great Plains Labs just did a study on the effectiveness of Mycellized vitamin D versus emulsified vitamin D.

"A recent double blind study by The Great Plains Laboratory, Inc. showed Micellized D3 had approximately 5 times greater increase in serum 25(OH) Vitamin D levels versus emulsified vitamin D. Micellized D3 is far superior in reaching and maintaining optimal levels of vitamin D3
over other forms of Vitamin D. Studies have been conducted on micelle vitamin preparations to
determine the effectiveness of this new delivery system when compared with both standard oil forms and other emulsified forms. The studies were conducted with normal healthy individuals varying in sex and age. The data shows that these micellized forms of fat-soluble micronutrients increased plasma levels greater than the oil forms and emulsified forms."

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Here is also more info from Mayer Eisenstein MD, JD, MPH from his blog. This contains several emails from other doctors on their use and success of Vitamin D3 in preventing H1N1.

1:30 PM PST, Wednesday, September 16, 2009

Dear Dr. Cannell:

Thanks for your update about the hospital in Wisconsin. I have had similar anecdotal evidence from my medical practice here in Georgia. We are one of the 5 states with widespread H1N1 outbreaks.
I share an office with another family physician. I aggressively measure and replete vitamin D. He does not.He is seeing one to 10 cases per week of influenza-like illness.
In my practice-- I have had zero cases. My patients are universally on 2000-5000 IU to maintain serum levels 50-80 ng/ml.

Ellie Campbell, DO

Campbell Family Medicine

3925 Johns Creek Court Ste A

Suwannee GA 30024

Dear Dr. Campbell:

That's good news. Now, if we just had a way for the CDC and the NIH to pay attention. Critics say we should not recommend vitamin D to prevent influenza until it is proven to do so (It has not been). The critics are thus saying, although they seem not to know it, you should be vitamin D deficient this winter until science proves being vitamin D sufficient is better than being Vitamin D deficient. Such advice is clearly unethical and has never ever been the standard of care. This is not rocket science. If I am wrong, and Vitamin D does not prevent influenza, what is lost? A few dollars. If they are wrong, and it does prevent influenza, what is lost? So far, the CDC says 41 kids are dead from H1N1, and the flu season has not yet started. Please contact your senators and congresspersons. Ask them to have hearings on vitamin D and H1N1: http://www.usa.gov/Contact/Elected.shtml

John Cannell, MD

PresidentVitamin D Council

585 Leff Street

San Luis Obispo, CA 93422

From Dr. John Cannell
September 16,2009

I'm writing to alert readers to a crucial email from a I'm I'm I'm writing to alert readers to a crucial email from a physician who has evidence vitamin D is protective against H1N1 and to ask you, the reader, to contact your representatives in Washington to help protect Americans, especially children, from H1N1 before winter comes. Dear Dr. Cannell: Your recent newsletters and video about Swine flu (H1N1) prompted me to convey our recent experience with an H1N1 outbreak at Central Wisconsin Center (CWC). Unfortunately, the state epidemiologist was not interested in studying it further so I pass it on to you since I think it is noteworthy. CWC is a long-term care facility for people with developmental disabilities, home for approx. 275 people with approx. 800 staff. Serum 25-OHD has been monitored in virtually all residents for several years and patients supplemented with vitamin D. In June, 2009, at the time of the well-publicized Wisconsin spike in H1N1 cases, two residents developed influenza-like illness (ILI) and had positive tests for H1N1: one was a long-term resident; the other, a child, was transferred to us with what was later proven to be H1N1. On the other hand, 60 staff members developed ILI or were documented to have H1N1: of 17 tested for ILI, eight were positive. An additional 43 staff members called in sick with ILI. (Approx. 11-12 staff developed ILI after working on the unit where the child was given care, several of whom had positive H1N1 tests.) So, it is rather remarkable that only two residents of 275 developed ILI, one of which did not develop it here, while 103 of 800 staff members had ILI. It appears that the spread of H1N1 was not from staff-to-resident but from resident-to-staff (most obvious in the imported case) and between staff, implying that staff were susceptible and our residents protected. Sincerely, Norris Glick, MDCentral Wisconsin CenterMadison, WI Dear Dr. Glick: This is the first hard data that I am aware of concerning H1N1 and vitamin D. It appears vitamin D is incredibly protective against H1N1.

Dr. Carlos Carmago at Mass General ran the numbers in an email to me. Even if one excludes 43 staff members who called in sick with influenza, 0.73% of residents were affected, as compared to 7.5% of staff. This 10-fold difference was statistically significant.

John Cannell, MD

PresidentVitamin D Council

585 Leff Street

San Luis Obispo, CA 93422


Dr. Eisenstein's Comments:

No one knows what treatment will be effective against the H1N1 Flu. However, the data from Dr. Norris and now Dr. Campbell are very compelling, that Vitamin D will be protective for H1N1.

To lower your families incidence of colds and flu this winter and to lower your probability of Swine Flu, start by measuring their vitamin D levels, keep it above 50ng/ml and by giving the whole family daily probiotics and vitamin D.

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New Beginnings carries mycellized vitamin D for $19.00 per bottle and a variety of probiotics. That is 600 ius per drop. Drs. Mercola and Blaylock recommend 2000 iu for kids and between 5000 & 10000 for adults.

Click the New Beginnings logo at the top of this page to order you vitamin D today!

GFCF chicken nuggets

I decided to once again try and tackle chicken nuggets. I took the easy route and bought the organic chicken tenders. I started by grinding up soaked and dehydrated almonds in the food processor. Once they were coarse I added all my seasonings, old bay, salt, pepper, garlic powder, etc. I soaked the chicken in water and then lightly fried them in a pan with just a touch of oil so the coating would stay intact. I just flipped them over several times. The tenders don't take long to cook. They were a big hit!!!

Last day for the NAA summer sale!!

I just wanted to post that today is the last day to receive 20% off from the National Autism Association's Little Shop of Hope. If you have been wanting to show your support by buying Autism related jewelry, car magnets, calendars, etc, now is the time. Here is the link to their ad:

http://campaign.constantcontact.com/render?v=0012ll_v_yVlH0_RLAKPDMgt1f6937-48WdKJNBEH5n_u3IU_AleNC8wDEuLuNw4Mkyyj25cm_eL2bG-JA6_Iqp3XQTlgrgXrfFhJs_9Yga7a0%3D

Buckwheat Pancakes (GFCFSFYF)

Buckwheat pancakes
1 cup buckwheat flour (i used sprouted/dehydrated buckwheat for even more nutritional content)

1/2 cup rice flour

1-1/2 tsp. baking powder

1/2 tsp. salt

1 Tbs. sugar

1-1/2 cup almond milk

3 Tbs. coconut oil

3 Tbs. molasses

2 eggs

1/2 tsp. vanilla

Combine dry ingredients in a large bowl. In a medium bowl, whisk together wet ingredients. Add wet mixture to dry mixture and whisk until combined--do not overmix. Pour by 1/4 cupfuls onto preheated pan with ghee. I have really struggled with getting rid of my teflon which included all of my griddles. I use my all clad pans and although I love them dearly, I hated cooking pancakes in them. When I would make pancakes with my "normal" GFCF flours and would use oil, they stuck to the pan horribly and it took sooooo long to cook each one. I decided to try ghee with this one and WOW! It was amazing. They did not stick. The ghee was the key, lol! And this flour mixture cooked so evenly and quickly, like "normal" pancakes. They came out SO good, I love the buckwheat flavor. The kids love them as do the adults. I see this being a new staple in the house. I made a double batch for freezing. Enjoy!

Flax bread/crackers (Raw, GFCFSFYFEF)

Garlic bread/crackers/wrap
1 cup flax seeds unsoaked
1 medium onion chopped
3 cloves garlic chopped
1/2 - 1 cup water as needed

Put all into a food processor, mix until well blended and as fine as you like it, slowly adding in water to mixture. Spread onto dehydrator sheets as thick/thin as you want. Dry at 110 degrees for 24 hours or until the desired crispiness.

You can do these thicker to make "bread", thinner for crackers and even thinner and for less drying time to make a "wrap". It is DELISH! M loved them, E not so much but my husband and I also really enjoyed them and they are easy. I just broke them apart and handed them out as crackers.

PVC free school supplies

Here is an ever so helpful guide to avoiding the awful PVC and vinyl that seems to be uber present in kids lunch boxes, backpacks, etc. Our schools start so early out here that I did not get this in time, but you can bet I will use it from here on out! Hope other can find this useful. Many thanks to the Center for Health, Environmeny & Justice for putting this together.

http://www.chej.org/publications/PVCGuide/PVCFree.pdf

Biomedical feeding conference in Temecula Aug 22nd

In a few weeks I will be heading to Temecula CA for the Biomedical Feeding Conference with Dr. Kurt Woeller, Julie Matthews and Dawn Winkelmann. It is like the trifecta of Autism gurus, IMHO because I know all three and just adore each of them for their wisdom, caring and unending devotion to helping families with kids on the spectrum! I will be on hand to promote New Beginnings. If you are in the area, or even here in Phoenix Metro, it is a close enough drive or short enough flight, if you have a child with Autism, on a special diet, and/or who has feeding issues, you NEED to go to this. Here is the schedule:

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8:00-8:30 Registration / Exhibits

8:30-10:00 Kurt Woeller “The Secrets to Success with a Biomedical Approach to Autism”
Biomedical intervention, i.e. diet, supplement support, laboratory testing has tremendous benefits for individuals on the autism-spectrum. However, there are so many options of what to do first, second, third…Dr. Woeller will explain which therapies have the greatest percentages for success and how to prioritize these therapies to help your child.

10:00-10:15 Break / Exhibits

10:15-11:15 Julie Matthews “Nourishing Hope: Nutrition and Diet Intervention for Autism”
Learn why proper diet and nutrition is essential for those with autism. Julie will present the
scientific rationale for nutrition intervention and provide an overview of the respective therapeutic applications of the many ASD diet options including GFCF, SCD, Body Ecology, Feingold, low oxalate, and more. She’ll discuss the foundations of a healthy diet, making changes that work for the whole family, and tips for picky eaters.

11:15-11:30 Break / Exhibits

11:30-12:30 Dawn Winklemann “Feeding & Swallowing: A Medical Overview for Kids on the Spectrum”
Feeding and swallowing difficulties are common for children on the autistic spectrum. Ms.
Winkelmann describes feeding disorders, the swallowing process, and the rationale behind our
children’s refusal to eat. She provides some realistic medical solutions and recommendations for
feeding our children.

12:30-1:30 Lunch Break / Exhibits (Bring your own lunch)

1:30-2:30 Julie Matthews “Cooking To Heal – The “How To” of Implementing an Autism Diet”
Julie will discuss the implementation of an “autism diet,” focusing on the GFCF diet and including
common meal ideas and substitutions for the Specific Carbohydrate Diet and others. You’ll learn
time saving tips, get meal ideas, and receive kid-friend recipes for implementing the GFCF diet,
as well as learn how to evolve the diet for experienced families.

2:30-2:45 Break / Exhibits

2:45-3:45 Dawn Winklemann “Practical & Playful Feeding Tips: Food, Pills and Supplements”
We shouldn’t have to struggle with our kids to get the nourishment they so desperately need. Ms. Winkelmann will bring her basket of therapy goodies to demonstrate practical and playful ways to encourage your child to eat food, swallow pills and drink supplements safely and consistently.

3:45-4:00 Break / Exhibits

4:00-5:15 Kurt Woeller “Methyl-B12 Therapy and its Incredible Benefits for Autism-Related Disorders”
Methylcobolamin, a form of B12 vitamin, is a fundamental component in biomedical intervention.
This vitamin influences attention, focusing, environmental awareness, language, detoxification,
etc. All of these are critical functions for anyone on the autism-spectrum. Dr. Woeller explains the significance of this important therapy, including how to obtain it, administer, and what to know regarding benefits, side effects and more.

5:15-5:45 Panel Q & A

5:45-6:00 Exhibits
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Here is the pricing:

Conference Pricing
Early Bird Registration Fee (until 8/1/09) ......................................................$45
On-Site Registration Fee (after 8/1/09 & at the door)....................................$75

Contact me if you need a registration form!

New one a day vitamin for moms/dads/caregivers of children with Autism/special needs

New Beginnings has a new product to offer, but this time geared towards those of us caring for special needs children. We know how important supplements are for our kiddos but often times (in my case anyways) I make sure my kids get theirs and I just can't seem to pull together the ones I should be taking as well. After years of searching, Lori Knowles, General Manager of New Beginnings and mother of a recovered child, has found a product she is willing to support. And, New Beginnings is offering a "try me promo" for free with any $12 minimum order from New Beginnings. To find out more about the promotion, click this link:

http://www.nbnus.com/promo-one-1.html

New Research in Autism

Here is a very interesting article from Age of Autism, don't worry if you don't understand all the technical language, just get the big pieces. 1) Mitochondrial dysfunction can be a large part of the puzzle for many kids (mine included) and there is a marker than shows this inability to absorb and process very long chain fatty acids (VLCFA). What this says to me is maybe we can get to a point where we are not diagnosing Autism just based on symptoms from a psychiatric/psychological point of view and more from a medical point of view. I personally think that is important because my belief is that many of the behaviors identified with Autism are in some way related to the health (or lack thereof) in the body. The more we can focus on the underlying medical problems associated with Autism, the more we can address them and heal these kids. And if you have the time, go to the Age of Autism site and read some of the comments, they are fabulous. Not sure if they are all parents or not but man, I am always so amazed to be in the company of such determined, educated warriors for our kids. We all need honorary PhDs I think. One comment was a suggestion to focus on the medium chain triglycerides (MCT) from coconuts. We use MCT oil for a natural yeast treatment (I get it from New Beginnings). And we use coconut and olive oil specifically to cook/bake with. The MCT may be better absorbed than the VLCFA which means more fat into the cell for energy. I have had great success using MCT twice daily for my son.

If we can pinpoint a susceptible group (which at this point may mean more of the population than we think) we can educate parents on the risks of vaccines for these kids. Now, whether those absorption problems begin before or after environmental assault is another question. It may mean we can better diagnose children after they have received vaccines (or other environmental assaults) and the damage is done. Or, could these problems be there from birth and be a way to know before hand?

And while we are talking assaults, I really, really hope no one out there is thinking of getting this swine flu vaccine. Please, please, please read my blog and search for some of the older blogs I have done about immune health and vaccines. First off, vaccines do not work as intended. Most of our immune system is located in the gut, injections bypass the gut and our body does not know how to handle an assault from that venue. And the reaction the body usually has is to develop an auto-immunity whereby the body now sees itself as a threat. So, enter many of the diseases we see on the rise today, diabetes, arthritis, MS, Autism, etc. Not to mention this vaccines has not been tested AND still contains thimerisol (as if all the other toxins are not bad enough). They are urging pregnant women to get the vaccine. Ludacris!! Look at the LAST time we tried to do a swine vaccine and how many people died from it or developed neurological impairment, including paralysis. Understand the immune system, do things to HELP it like good nutrition, low sugar, supplements, stress management, sleep, and hand washing. Your immune system is your defense! Take care of it and you can fight the buggies off! Have some basic immune boosters on hand and as cold and flu season approach, start them with your kids and yourself. Olive leaf extract, garlic (like Allimax from New Beginnings), grapefruit seed extract, elderberry, zinc (but not nasally), vitamin C, there are many others out there that I am forgetting too. Lets not fall into the trap of a shot will protect us. We have a whole generation of kids that is showing us those shots are not protecting us and in reality are doing more harm than good. Because if we all looked, MOMS - those mitochondria come from US so if we also have some level of impairment, don't you think all these toxins harm us in smaller ways than we see them harming our kiddos?

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A Clear Biomarker for Autism? – The Question of Alterations in Lipid Metabolism.
By Kent Heckenlively, Esq.
(Author’s note – I’m indebted to Professor Richard Deth of Northeastern University for sending me this article.)
The title may be long and confusing, but the findings are what many have been hoping to discover for years. (Novel Plasma Phospholipid Biomarkers of Autism: Mitochondrial Dysfunction as a Putative Causative Mechanism, Prostglandins Leukotrines Essent. Fatty Acids (2009) (HERE).
Given the profound differences in behavior and cognition in children with autism it's only reasonable to believe there must be some trace in the body of what makes these children so different.
Researchers in Canada working for Phenomenome Discoveries, Inc. and the Jonty Foundation out of Saint-Paul, Minnesota believe they may have found the answer.
In prefacing their study the researchers noted, “Neuropathological studies in autism have shown increased microglial activation, decreased cerebellar Purkinje cell density and abnormal brain swelling, particularly in white matter. Biochemical studies have shown increased oxidative stress, abnormal glutathione metabolism, decreased melatonin, and increased docosahexaeonic acid (DHA) in autistic subjects. Although there is debate as to whether autism has a pre- or post-natal origin, it is generally accepted that the symptoms and pathology persist through the life of the subject. These studies suggest that there is an underlying and ongoing biochemical abnormality in autism, regardless of its origin.”
The study conducted by the researchers was designed to find evidence of metabolic dysregulation and toxicity, regardless of the initial cause. Their plan was to collect three plasma samples over the course of a year from 15 autistic and 12 non-autistic age-matched controls. 8 out of the 12 controls were siblings of autistic children, some of whom had impairments in social relations not rising to the level of autism.
The researchers found “consistent alterations in the levels of very long chain fatty acid (VLCFA)-containing phosphatidylethanolamines (PtdEtns) and in DHA-containing ethnalomine plasmalogens (PlsEtns). . . These findings are reported herein and suggest a possible disruption of fatty acid metabolism due to compromised mitochondrial function. Mitochondrial stress was assessed through measurements of reduced glutathione (GSH) and related metabolites. In addition, we investigated and compared the in vitro effects of glutamate toxicity on neuronal, astrocyte and hepatocyte cell cultures to biomarker changes observed in the autistic subjects. Impaired mitochondrial fatty acid oxidation as the underlying cause of elevated plasma levels of VLCFA-containing PtdEtn is hypothesized.”
In plain English, what does this mean? First, the researchers found abnormal levels of very long chain fatty acids in children with autism. Second, it may be due to the mitochondria not working as well as it should (I'd also suggest involvement of the peroxisome). Last, the glutamate derangement which would result from this situation would have different effects on different parts of the brain.
All of the autistic subjects had significantly elevated plasma levels of long chain fatty acids A curious finding was also uncovered in relation to the siblings of the children with autism. “In all eight sibling pairs in which a non-autistic sibling was available for comparative analysis, the autistic child had more pronounced VLCFA lipid changes than the non-autistic sibling. Out of these controls, five showed some impairment in social cognition. When studied as a separate group, they displayed higher levels of lipid markers relative to non-impaired controls. These results suggest that the lipid biomarkers are also indicative of risk in that siblings of autistic subjects are considered to be “high-risk” controls and may share some phenotypic traits of the syndrome.”
In their discussion the researchers observed that their results “indicate that chronic mitochondrial stress is pervasive in autism and that elevated levels of fatty acid elongation and desaturation products are useful metabolic biomarkers of both mitochondrial stress and autism.”
The question of how glutamate may adversely affect the brain was addressed by the researchers. “Glutamate was used for the following reasons: it plays a major role in microgliosis, which is pervasive in autism; its ability to deplete glutathione is well-documented; and it has been reported to impair mitochondrial beta-oxidation, which is central to our hypothesis.”
In their experiments with glutamate on various brain cells they found “In all cell culture assays performed on hepatocytes, neurons and astrocytes, glutamate exposure resulted in a decreased 16:0 mitochondrial beta-oxidation, an increased peroxisomal processing of 16:0 and cytosolic fatty acid elongation/desaturation, as evidenced by an increased DHA-PlsEtn to 18:3-PtdEtn ration. Based upon these studies, the origin of the biomarkers we observed in autism plasma is hypothesized to be the result of impaired mitochondrial function.”
In their conclusion the authors stated, “the data presented herein indicate that a common metabolic phenotype is present in autism, and that this phenotype can be easily measured from a blood sample. This metabolic phenotype is characterized by elevated plasma levels of VLCFA-containing lipids arising from impaired mitochondrial fatty acid beta-oxidation. We further speculate that the elevated plasma VLCFA could be causal to the pervasive microglial activation observed in autism via a mechanism previously established in X-ALD. (X-linked adrenoleukodytrophy is a disease which has been studied extensively by the Peroxisomal Disease Laboratory of the Kennedy-Krieger Institute/Johns Hopkins.) Glutamate, a known neurotoxin that is excreted by activated microglia was shown by direct experimentation to reproduce the observed metabolic phenotype in liver, neuron, and astrocyte cultures. A thorough literature review of autism and glutamate revealed that glutamate toxicity arising from neuroinflammation is consistent with all known biochemical, pathophysiological and epidemiological data in autism.”
Although this study was small in nature and leaves many questions unanswered, such as the cause of the neuro-inflammation, it provides potentially breakthrough information. If the level of very long chain fatty acids can provide a clear biomarker for autism we will not only have a way to diagnose, but we'll also know the direction that research should proceed to find a cure.
For further information on the possible connection of autism to very long chain fatty acids you can look at my previous article on the subject HERE.
Kent Heckenlively is Legal Editor for Age of Autism

Autism underground, biomed treatment

One of my new Facebook Friends, Karen, posted this article from the Huffington Post. What a great article. All I can say is, yep, live it everyday. It astounds me the number of people who try and discredit the biomed approach to Autism treatment. OK so I never signed my son up for a research trial. But, 2 years ago he was screaming as he walked by the integrated preschool classroom because his sensory system was completely overwhelmed, needing the Autism class with its visual prompts, calm, partitioned spaces, and low lighting. He just started regular kindergarten at the first A+ rated charter in our state (which has a waiting list a mile long!) with no more than what I would call normal first day jitters. He still has speech delay and fine motor delay. His auditory sensitivities have gotten better but he still has super sonic hearing and can be distractible. But, what have I gotten each day when I pick him up? "He had a great day Mrs. Hirning". What more can I ask for? 1 year into biomed (with the help of my AWESOME DAN! Doctor, Kurt Woeller) and my son progressed from needing a heavily structured Autism class to being in a fully integrated Kindergarten class of about 20 kids in a very academically focused, A+ rated school. This is what I wished for him, right here. Will there be challenges? Of course, I am not delusional. But, I work my butt off each day, kicking Autism in the teeth as much as I can along the way through supplements, diet, sensory activities and lots of love, reassurance and planning. It is what I do, fight for my son, trying new things, switching it up when I need to. But to hear my son tell me he loves me and that he has a new best friend 3 days in to the school year, and that they will be best friends forever is absolutely priceless. Some of these simple things that many take for granted I appreciate with every fiber of my being because I know how hard it was for him to get here, and I know we still have a ways to go. So, no, my son was not in a formal "study" but he is my proof, my science, and that is all I need to go by.
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The Price of Intervention: Autism Underground
My daughter was diagnosed with autism several times. The first time was by her first preschool teachers, who told me they were not qualified to diagnose, but that I should seek professional diagnosis for a syndrome they had seen many times in other children over the years. The second time was by a UCLA specialist named Dr. Alessia di Paolo Gottleib, at the office of Dr. Jay Gordon in Santa Monica. I looked at Dr. Gottleib after she had spent an hour on the floor playing with Lila, wanting a sign that the teachers had been mistaken. Her face was stony. I said "What do you think?" Her face broke a little with a grim resignation. "Lila has autism", she stated. My daughter jumped and whirled before us as the silence took over in my head.
I asked nothing about what I could do for Lila that afternoon. Dr. Gottleib told me she would send a written report as I stumbled from the office, struck numb and destroyed by grief.
The third diagnosis came from a doctor of psychology at the local Regional Center, who also pronounced "autism" quite openly after half an hour with Lila. This was about three weeks after the time with Dr. Gottleib, and my despair had leaked a pin-size hole where I could finally formulate words about my daughter's situation. During my midnight and early dawn pillaging of the internet I had discovered the gluten and casein free diet and had learned a little about what Dr. Rimland was purveying for our children from The Autism Research Institute in San Diego. I mentioned the diet to the Regional Center doctor. She shook her head sadly and reported it was mean and predatory for people to spread such information, when parents getting this diagnosis are so vulnerable. She told me plainly that there is no treatment for autism, the diet is considered a farce, and that anyone telling me different was a quack to be avoided.
Again I was spun by the words from the visit with the Regional Center psychologist as we stumbled home. As a single parent I was processing everything happening to my daughter alone, and I vacillated between questioning my sanity and feeling a determination inside that something could be done to help Lila. Something about pushing her diagnosis under a rug and resigning myself to never seeing her again, never knowing my daughter who was once totally neurologically intact and healthy again, was ringing impossible for me.
That night and for many nights thereafter I did not sleep. This went on for several weeks, but at the beginning, within the first few nights, I found a woman named Mary Romaniec on the internet who claimed in a magazine article, that her son had been totally recovered from autism. Within a day of reading this article a friend of mine called me. I must have fallen in too familiar with the despair that had settled in, she expressed an uncommonly serious concern for my well-being after hearing my voice on the phone. She also told me she had a friend in Orange County whose son had autism, and she gave me that woman's number. I remember that day as a milestone in the life of my child. I called that woman, and we talked for hours, like we had known each other for years. Her son had been diagnosed four years prior, and she had a DAN (Defeat Autism Now) doctor, the product of Dr. Rimland's work. There were doctors peppered throughout the United States who believed autism is treatable, that gains could be made in the lives of these once healthy, now deeply compromised, children. None of the doctors or specialists we had seen had told me anything about this; the party line was firmly in place that autism could not be treated.
This mother's son had not recovered from autism. She and her physician husband (who incidentally ran interference between her and the world after the diagnosis had happened, a luxury I found myself deeply jealous of) had enlisted a DAN doctor named Robert Sears, Jr. to treat their son's autism. Her boy had improved a great deal, had gotten language back after a period of time on "the diet" still took copious amounts of supplements, but he was not recovered. She explained to me that she had finally reached a place of acceptance about her son's condition never going away, and had the experience of raising a neuro-typical child with her daughter, born before their first child had been diagnosed. Part of me wondered if I would ever have that experience again.
Something so powerful, so undeniable, took me over after that talk. I had evidence of a child who had recovered, according to his mother Mary Romaniec. I had further evidence that a child could improve with treatment, from the mother in Orange County. In that moment I decided, irrevocably, that my child would recover. I knew that my life was meant for one purpose only: to find the treatments, protocols, and experts who would bring healing to my child and return her to me again. There was no obstacle that would stop me.
Notice, dear friends, that this dawning of realization came to me surreptitiously, through the Autism Underground, a place filled with pioneering parents and doctors willing to take professional risks to save our children. It sounds dark and forbidden and mysterious, as the medical establishment may actually want it to sound, to scare parents away from seeking treatment, at any cost. But as autism parents, even in the age where autism pervades our population at a rate 10,000 times what is was in 1985, we remain in the position of having to find help for our children through this underground.
I put Lila on the gluten and casein free diet (another story of heroism we autism parents undertake universally) and took her to see Dr. Sears after over a month of waiting to get off his waiting list. The cost of that consult was my first staggering blow, and I sold photography equipment and used our rent money to pay for it. Photography at that time was my livelihood, so I was selling my work materials to pay for medical treatment. You may or may not know that autism is legally excluded from medical insurance coverage in the United States (in every state except Arizona, whose legislature forced insurance companies to cover autism starting in 2008). So, yes, we autism parents second and third mortgage and sell our homes, sell our work equipment, ransom our time in second and third jobs and in some cases lose close to everything to procure medical and therapeutic intervention for our children. In the United States of America in the year 2009, our kids are excluded, because they have been diagnosed with a permanent disability, from getting medical care.
This is where we look up the meaning of discrimination in the dictionary and discover that autism is a civil rights crisis of the most grievous order. In addition to being barred from insurance coverage for treatment, our children are offered poor, sometimes totally bogus options for education and therapy through the bureaucratic agencies appointed to mete out provisions. They frequently get bound, and sometimes tortured by those same entities, during the school day -- a pervasive problem in the US. They get this inferior provision because, again, they are disabled with a particular disorder called autism. One of the biggest shocks and disbeliefs that has leveled me in this journey with all the other autism parents I have stood beside in Sacramento and D.C., is that the discrimination goes unrecognized by those in power. They simply cannot or will not see the gross level of deprivation these children face because of their disability.
I followed in the footsteps of many parents who came before me into autism and I got Lila some medical treatments that traditional pediatricians told me were absurd. Aside from the odyssey into the world of Candida Albicans and Dublineisis, (aka yeast) that plagued Lila's guts for two years without relent, Lila underwent IVIG (Intravenous Immunoglobulin) therapy like Mary Romaneic's son. Mary was available to me throughout the process and we talked many an early morning about what was happening with Lila. The total cost for Lila's 18 monthly treatments was $45,000, cash money. That money was raised by having a rock concert with friends from college times: Tenacious D. (I later found out there was a way for that doctor to have gotten insurance to cover it, but since that would have meant 50% less profit for him, he had us pay cash, another story for later.)
Of the dozens of medical interventions that Lila experienced, IVIG was the most dramatic. The first time we went to the clinic in Orange County, our wagon filled with toys and books for the all day affair on an intravenous drip, I saw a miracle. My daughter came back to me, fully recovered, verbal, without flapping and flailing, lucid: my Lila. The euphoria I experienced was other-worldly. I dropped to my knees and thanked God. I wept with tears of endless gratitude.
Lila was with me that time for about 5 days until I watched the immunoglobulin harvested from 1500 donors metabolize out of her system and she slowly slipped back in to autism again. This happened 17 more times. Twice she was rushed to the hospital after an infusion in the middle of the night with a 104+ fever that would not go down. About 15 infusions in, a heart murmur developed. (This was later resolved and was found benign when the infusions ended.)
Every month she would return to me calm and lucid, and slip away again. At the end of that year and a half, I contacted two family friends for more money to keep her going. She went three more times, and each time my disbelief that she was slipping away again became more crazy-making. I called a DAN doctor in Florida to beg advice. I called mothers in autism I knew, agonized. Finally, with no more funds, and no sign that the pattern would change, I had to let IVIG go and settle in to the daily life of a child who was fully trapped inside the vortex of autism. I was told that those brief reprieves from the immune component of Lila's autism had given her brain a chance to weave itself together a bit. Some gains remained. Lila was more verbally competent than she had been before.
This is one simple tale of many in the galaxy of bio-medical treatments we seek to help our children regain their neurological and immunological faculties after autism has been visited upon us. The saga of testing, metal load, gastrointestinal plagues, sensory processing disorders, auto-immune disaster, all of it took the time and money to investigate possible cures. Today, five years after the diagnosis, we are fundraising for Lila's Hbot (hyperbaric oxygen therapy) which costs thousands of dollars and won't be provided for by insurance.
One of the flimsy claims the insurance lobby makes for excluding autism is that its treatments are not proven. However, there are now hundreds of children who have recovered through IVIG, diet and chelation therapy. Further, there are thousands of cancer patients who die each year despite having received costly "medically proven" chemical treatments. The difference? There are ten thousand times more children with autism than cancer, and ten of thousands more coming down the pike each year who the insurance lobby don't want to treat. This is a tidal wave epidemic that government and society can longer ignore. As a champion in autism Rick Rollens often says: "Autism is the fire at the door."
To the parents in Orange County in our film, who are living in the guest quarters of their parents home after spending every penny they had on the legal battle for their autistic daughter's inclusion in school, to the parents who have lost their homes in foreclosure from the financial burden of giving their autistic child the chelation and oxygen therapy he needs to recover, to the mothers who don't speak English, and who have dark skin, who never dare to challenge the powers because of their uncertainty in the pecking order: Our children are worth this struggle. Speak to the government, speak to the doctors, speak to the other hundreds of thousands of parents in this country alone who are being involuntarily inducted into the confraternity of autism as their children fall into the void: let them know that this underground struggle must be brought into the light. There is one goal as we enter into this age of autism, and that is to open the doors to access for this new generation to get medical intervention, to avoid vaccinations if necessary, to obtain the highest possible level of educational and therapeutic supports to regain their lives.
I had to come to terms with the fact that Lila is not going to recover from autism, about a year ago. She's come up about 75% with the interventions she's received, and she still continues to improve. She never stops working. Today she has a chance to go to school with typical peers, to enjoy sports activities and play dates, to excel academically to the best of her ability, because of this intensive work we have done. I wouldn't take back a minute of the fight to get her where she is today.
We are here now to bring light to the autism underground, to make intervention open to all children affected by autism regardless of race, origin, or socio-economic status.
More information about the autism journey can be found at http://pilgrimsmovie.com, The Pilgrims: the journey to a new world for autism is narrated by Aidan Quinn and directed by Amanda Copeland. Produced by Aaron Ryder and Rodrigo Garcia and sponsored by Iberia Airlines of Spain. Email Amanda Copeland for more info on the film or for help and questions regarding intervention for your child with an autism diagnosis. Autism is reversible.
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Syndrome of Allergy, Apraxia, Malabsorption

Phenomenal! I love it as more and more science can support the fact that biomedical interventions for children with Autism are more effective than just traditional therapy alone. Here is a new research study supporting the use of a gluten free diet as well as supplementation for greater success in speech therapy. As many moms of children with Autism know, there are medical conditions that are underlying, you treat those and you have a reduction or in some cases, extinction of Autism related symptoms. This came from Dr. Jacqueline McCandless from her LDN Yahoo! group. Sorry for any formatting issues, I copied and pasted.
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SCIENTIST FIRST TO CHARACTERIZE NOVEL SYNDOME OF ALLERGY, APRAXIA, MALABSORPTIONNewswise — A landmark study conducted by Children's Hospital & Research CenterOakland is the first to reveal a new syndrome in children that presents with acombination of allergy, apraxia and malabsorption. Autism spectrum disorderswere variably present. Verbal apraxia has until now been understood to be aneurologically based speech disorder, although hints of other neurological softsigns have been described. The new study, led by Children's Hospital & ResearchCenter Oakland scientist and pediatric emergency medicine physician, ClaudiaMorris, MD, and Marilyn C. Agin, MD, a neurodevelopmental pediatrician at SaintVincent Medical Center in New York, however, suggests that the symptoms ofverbal apraxia are, at least for a sub-group of children, part of a larger,multifactorial, neurologic syndrome involving food allergies/gluten-sensitivityand nutritional malabsorption."While it is critical to treat verbal apraxia symptoms that often include severedelays in expressive speech production with speech therapy, we need to startasking why these kids are having these problems in the first place so that wecan identify mechanisms we can actually target to treat the cause of thesymptoms," says Dr. Morris.Published in the July/August issue of Alternative Therapies in Health andMedicine, the new study takes a major step toward identifying the potentialmechanisms that may contribute to apraxia symptoms. In the study, Dr. Morriscollected information from nearly 200 families with children who suffered fromverbal apraxia in order to better characterize the symptoms and metabolicanomalies of a subset of children. The data clearly demonstrated a commoncluster of allergy, apraxia and malabsorption, along with low muscle tone, poorcoordination and sensory integration abnormalities. In addition, Dr. Morris wasable to gather laboratory analyses in 26 of the children, which revealed lowcarnitine levels, abnormal celiac panels, gluten sensitivity, and vitamin Ddeficiency among others.All children genetically screened carried an HLA gene associated with glutensensitivity and celiac disease. "The sample size is still small and should beinterpreted with caution," says Dr. Morris. "However this is of particularinterest given the recent publication by Eaton and colleagues in the July 6online edition of Pediatrics demonstrating a greater than 3-fold risk of autismin children born to mothers diagnosed with celiac disease. This brings somecredibility to the anecdotal reports of gastrointestinal and behavioralimprovements in children with autism spectrum disorders and/or verbal apraxiawhen eliminating gluten from their diets. Although the implications of theseobservations remain to be determined, this association and the utility ofdietary modifications warrant further investigation, particularly if we canidentify a genetically vulnerable group".Most significantly, the data indicate that the neurologic dysfunctionrepresented in the syndrome overlaps the symptoms of vitamin E deficiency. Whilelow vitamin E bioavailability may occur due to a variety of different causes,neurological consequences are similar, regardless of the initiating trigger. Thestudy suggests that vitamin E could be used as a safe nutritional interventionthat may benefit some children. Growing evidence support the benefits of omega 3fatty acid supplementation in a number of neurodevelopmental disorders.Anecdotally children with verbal apraxia will often demonstrate leaps in theirspeech production when taking high-quality fish oil. The addition of vitamin Eto omega 3 fatty acid supplementation in this cohort of children inducedbenefits that exceeded those expected from just speech therapy alone, accordingto parental report."While data from a case series is by no means conclusive, the results clearlypoint to the need for further attention to this poorly understood disorder, anda placebo-controlled study to investigate the potential role of vitamin E andomega 3 supplementation in this group of children," says Dr. Morris.She points out that it is equally important for children given an apraxiadiagnosis to receive a more comprehensive metabolic evaluation than what iscurrent practice. Many of the nutritional deficiencies like low carnitine, zincand vitamin D are easily treated. By not addressing the nutritionaldeficiencies, the child will continue to suffer from significant medicalconsequences of those deficiencies. The first step is to identify and treat thedeficiencies. The next step is to try to figure out why they have thesedeficiencies and a fat malabsorption syndrome in the first place. However, Dr.Morris does advise families to work closely with a physician rather than tryingpromising but unproven interventions on their own.In the mean time, however, Dr. Morris's study provides the essential foundationfor identifying the children who may need these treatments."By identifying these early red flags of the syndrome, we've provided a way toget these kids treatment at the earliest possible moment. While 75 percent ofthe time kids identified as late bloomers really are just that, 25 percent ofthe time there is a true pathologic condition. To miss it is to miss criticallyvaluable time for early intervention. If a child has all these symptoms, chancesare they are going to fall into the 25 percent who have a condition that needsfurther evaluation and treatment."

GFCF Buckwheat granola (RAW)

The buckwheat, right out of the dehydrator, sorry you can't see their little "tails"

The finished product!

The next thing I decided to experiment with was buckwheat. Once again, this comes from my Raw food friend Sunny's recipes (she is working on a RAW cookbook by the way for anyone interested!!). She served this type of granola when we visited a few months back. I ordered by buckwheat from Azure standard. I had been avoiding buckwheat because, well it even has wheat in the name! Surely that can't be gluten free, right? Wrong! It is actually seed from a fruit! Here is more info on this versatile grain:

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It is believed that buckwheat was first domesticated in China. As it spread across Asia and Europe during the centuries, it took a particularly strong hold in Russia where kasha is popular. A relatively new grain, it hasn't been in cultivation for much more than a thousand years. Saying it's a grain is a misstatement as it's not really a grain at all. It's actually, technically, a fruit. It's a hardy plant that thrives in poor soil conditions and continues to live through freezing temperatures, droughts and excess rain.

The unprocessed, three-sided buckwheat seed has a thick, hard outer hull that must be mechanically removed before it's ready to eat which is the way it's sold. After the seed has been de-hulled, the inner seed or groat has a light brown or light green coloring and is so soft that it can be easily chewed. Having a distinctive, pleasant, rich flavor all it's own, 100% buckwheat flour makes delicious pancakes. Mixed with wheat flour, buckwheat makes great tasting biscuits, muffins and breads and can be mixed up to 50% with wheat flour for making yeast breads. In Eastern Europe, the groats are toasted and are known as kasha. Commercial food processors mix buckwheat flour with other flours to make pancake mixes, breakfast cereals, breads and turkey stuffing. In Europe, buckwheat groats are used whole in hot cereals and soups. They can also be boiled until they become soft and fluffy and then eaten like rice. The Orient is the largest user of North American grown buckwheat where it's used to make sorba noodles.

Whole grain buckwheat is an amazingly nutritious food. Even though it's protein is relatively low at approximately 11%, the protein buckwheat does have contains the eight essential amino acids and is one of the few "grains" (remember that buckwheat isn't a grain at all) high in lysine. If you use half buckwheat flour with your wheat flour, the buckwheat's amino acids will round out the limiting amino acids in your wheat nicely, giving you a nearly perfect balance of the 8 essential amino acids. This particular balance between half wheat and half buckwheat flour is much more closely aligned to your dietary needs even than lean beef!!! It's also rich in many of the B vitamins as well as the minerals; phosphorus, magnesium, iron, zinc, copper and manganese. In addition to this, it's a good oil source of Linoleic acid, one of the two essential fatty acids we must have to be healthy. Nutritionally speaking, buckwheat is a truly impressive food.

Buckwheat contains rather volatile essential fats inside the seed that aren't protected very well after the air-tight hull has been removed. It isn't a good storing grain unless precautions are taken to remove the oxygen. Like brown rice, oxygen makes the essential oils in the seed go rancid, giving it a bad taste and making it unfit to eat. So, when storing buckwheat for long term storage, be sure you place it in airtight containers and use oxygen absorber technology which should give it a long storage life.

The buckwheat plant is also very useful as honey bees love it's flowers for making dark, rich flavored honey. And farmers also use it as a green fertilizer. Just a couple of years ago, buckwheat hull pillows were the rage. You can still find buckwheat hull pillows advertised in different catalogs. These pillows are famous for providing a soft yet cool pillow that permits the skin next to the pillow to breath.

Buckwheat is certainly a versatile plant and is definitely a seed worth storing to round out the nutrition in your food supply - especially if you'd prefer not to eat beans to get that lysine to augment your wheat.

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So now we get to how I prepared it. I soaked it and sprouted it. I soaked them for 4 hours (with a few drops of GSE) - you can soak for 4 - 6 hours. Then I put them in a colander, rinsed and left on the counter for 24 hours, tossing them every so often to get the more wet seeds on top and the drier ones in the middle/bottom. After a while, they started growing "tails" which is indicative of their sprouting. If they don't sprout after 24 hours, you have a bad batch.

After sprouting, I put them in the dehydrator for 8 - 10+ hours. The key is getting them very, very dry so I actually started them at 2 pm and just let them go all that night too so I ended up drying them about 16 hours or so. They cannot be "too" dry but if they are not dried enough, they will go rancid quickly and you don't want that. After drying, I took them out, mixed them with a small amount of raw, organic honey, coconut oil, coconut (shredded) and some sunflower seeds. I will attached a link for the recipe I used but I only had sunflower seeds on hand, not pumpkin so I just went with what I had. That's why I love cooking, you can make it up as you go along! I sprinkled some cinnamon on top and viola! Instant "raw" healthy granola. M loved it, so did I. My little E, not so much but she is a carbo queen, we are still working on that!

After you have dehydrated them, you can also grind for flower and store in the freezer for longer keeping. Or you can store them just like this in the freezer, your choice. I did a small batch to start, not knowing how they would turn out but I think this will become a staple in the house now. When sprouted and dried, they have a consistency that is a cross between a rice crispie and a grape nut. They are not as hard as grapenuts and not as soft as rice crispies. The flavor is very light and almost sweet. And, as you will find with most raw foods, a little goes a looooong way. I can eat raw food and expect to eat a "normal" portion and get full way before the serving is gone. They are so nutritionally dense that your body knows when to say when. So, for anyone wanting to branch out on a GFCF diet or just eat more raw foods, this one was a hit and can be tailored to your family's liking. Enjoy!

PVC, Lead, Cadmium and other toxins in toys and children's items - UPDATED

Well, as I finished my blog, I left our office to go rip the tags off of those Target bags I just gave props to, I realized I missed one minor detail, the fact that they had MICROBAN in the sacks (which I had never seen before but I don't often buy lunch sacks either!!!). I was so focused on the BPA issue that I broke my own rule READ THE WHOLE LABEL!!! But, I was rushing out the door and figured I would stop at Sprouts for a better alternative. And, while I was out, I got a comment from a reader (THANKS NEEDLE.AND.DAMAGE.DONE!! They wrote "Terri, pvc-free is great, but your pictures show they have microban. Google autism triclosan and you'll see that's a suspect chemical too."). You are ABSOLUTELY right and I am ashamed that I was so quick to scan the tag and miss that completely!! Thanks goodness it wasn't too late and I did get the ones you see above from Sprouts, significantly higher cost but what's new, right?? So thank you Needle.and.damage.done!!! Microban and triclosan are being more commonly used, many foaming hand cleaners use triclosan and we avoid those. I don't think I have ever seen them on lunch sacks, but like I said, it has been a long time since I have needed to buy one. But beware, many of the licensed character ones that are so pupular with the kids have PVC in them. And be even more aware of the ones advertising that they are PVC-free, they could have even worse things in them!! Read below for the original article, minus the plug for the Target lunch sacks! Sorry for the sideways picture, for whatever reason it will not add the picture with the correct orientation!

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Here is another disheartening article on toxins in children's toys. I want to also point out, as we get ready for school, choose wisely when picking a school lunchbox for your child. Your child's food will be stored in this for hours, often exposed to heat which will exacerbate any leaching of chemicals so pick ones without PVC. This goes for those plastic water bottles too. I have blogged on plastics before so go to the bottom of my blog and find the link for older posts if you need to read more. BPA is a toxin that is often in plastics. Make sure any water bottle you buy is BPA free!! More and more manufacturers are making products free of BPA but you have to look for them, if it doesn't say it, don't assume it doesn't have it! And then do not microwave or or put in the dishwasher your plastics. The high heat starts the leaching process. I would hand wash just to be on the safe side. Unfortunately we cannot assume that government agencies are keeping our children safe from toxins even in toys. We as parents need to educate ourselves on the things that are coming in contact with our children. If you have a child with Autism, this is even more important due to the faulty detox pathways that are often present with the disorder.
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KALAMAZOO -- A lion sitting on a raft -- both pieces made of plastic -- failed. A Doodle Pro, a small, magnetic drawing toy made by Fisher-Price, also failed. "It's a cool toy, if it's not toxic," said Tina Tabulog, holding a small wooden block with painted balls attached to it. Some of the balls, as well as the lion and the Doodle Pro, tested positive for lead. The amount was below the legal level but was high enough to concern Tabulog. She decided to get rid of them. Tabulog had a bag of toys with her at Bronson Park on Monday and wanted them tested for harmful substances. Toy testing, a press conference and a giant, inflatable duck were part of a statewide blitz by the Michigan Network for Children's Environmental Health to raise awareness of and support for the Children's Safe Product Act. The act would require toy manufacturers who have products on shelves in Michigan to notify the state government of any chemicals present in the toys that are known to be hazardous to children, said Mike Shriberg, policy director for the Ecology Center and the coalition. The state would then make that information accessible through the Michigan Department of Community Health. The chemicals Shriberg is concerned about include lead, arsenic, bromine, cadmium and mercury. Shriberg said the coalition has tested thousands of toys and found that a third have elevated levels of harmful chemicals. "It's 100 percent preventable. There's no reason to have lead," Shriberg said as he tested a Barbie doll. The Barbie showed traces of chromium, and Tabulog gave it to Shriberg to keep an as example. Her two children, Morgan Smith, 4; and Lukas Smith, 16 months, already have elevated levels of lead in their bodies. Tabulog said she is concerned that the substance already has caused health problems. The act, a series of seven bills, passed the state House of Representatives 64-44 in May and currently sits in state Senate's Health Policy Committee, chaired by Sen. Tom George, R-Texas Township. George, a physician, said he does not favor the bills as written and that the issue is not high on the Senate's health-policy list. He said of the chemicals identified in the bills, lead presents the greatest concern. Last year the state adopted the federal government's standards for lead and strengthened its testing and abatement programs, George said. A federal law, the Consumer Product Safety Improvement Act of 2008, bans the sale of products that contain more than 600 parts per million of lead that are intended for children 12 and younger. George said there are other issues before the committee that are more pressing, and he expressed concern that the bills would set standards and procedures different from those in other states. He said manufacturing standards are usually handled at the federal level. Rep. Robert Jones, D-Kalamazoo, who announced on Monday he would seek the 20th District Senate seat now held by George in 2010, voted for the bills. He spoke in favor of the act at Monday's Bronson Park event. "I think it is just awful that someone would produce and market something that would cause damage to our most precious things," Jones said. Bill Kirk, communications director for the Michigan League of Conservation Voters, said the act, if passed, would not ban any substances or require companies to label their products differently. The bills, he said, would allow companies to conduct business as usual while equipping parents with information on neurotoxins and cancer-causing and hormone-disrupting chemicals present in toys. Washington, Minnesota, Maine and California already have similar, more strict, laws on their books, he said. Contact Aaron Aupperlee at aaupperlee@kalamazoogazette.com or (269) 388-8576.