Cancer, Autism, and Faith

A number of years ago, when we were in the thick of reactions, hospitalizations and testing, trying to figure out what was wrong with our little one,  I struggled to find a church home where I could find peace, solace, understanding and renewed faith.  I struggled, because it seemed the churches we visited were set up for neurotypical children and families with no health issues or concerns.  At the height of my frustration and as I was ready to throw in the towel, I happened upon this blog, Autism and the Church, and instantly I knew I was not alone in my religious journey.

After I read Thinking Moms Revolution book, I further connected with the author of that blog, Melanie (aka Booty Kicker) and found such comfort in reading her blogs about special needs, autism and church and faith. This blog hit another nerve, after moving to a new city and starting our search for a new church home all over again, and being met with candy, cookies, artificial everything, EVERY SUNDAY, with a child who cannot eat any of it (due to allergies, intolerance and metabolic concerns), again I was not alone in my struggles… BK had been there and felt that.  Melanie’s words and blogs have really changed  how I view religion, faith and church… I have a strong desire to be part of the solution now, and not complain about the problem. While I still haven’t figured out exactly how I fit into God’s plan to help other in the church religious realm, I do know that he has brought some amazing people into my life recently (including Melanie) that have similar concerns and desires to make His love know to ALL our children, not just the ones who can sit quietly in a pew!

Well, tonight I am writing this blog because it is time to give back and pay it forward. Melanie, who has already fought and beat breast cancer and bone cancer, is facing cancer for a third time. My heart is broken that this is happening again to such a sweet, faithful and caring soul.  Many in the autism (and beyond) communities are rallying together for a fundraiser for Melanie and her family, to help with treatment and with care for her autistic son while she heals.

Please consider doing what you can, be it prayers, good wishes, words of encouragement or a donation to her fundraiser.

Text from fundraiser:

Thinking Mom Melanie Baldwin suffers spine, liver cancer after having beat breast and bone. Son suffers profound autism: please donate!

An amazing woman by the name of Melanie Hamilton Baldwin changed the face of autism and cancer culture by telling her story to thousands as “Booty Kicker” in the Thinking Moms’ Revolution’s book Autism Beyond the Spectrum. Having once beaten breast and bone (hip) cancer; she now suffers liver, spine, and bone cancer in her other hip. For anyone who knows Melanie, two words come to mind. “Faithful” and “Godly.” As she struggles to overcome her current issues, her severely affected son Luke, still requires 24/7 care and attention as he is self-injurious and quite ill, suffering the lingering effects of severe autism. Please consider donating generously to help her family care for Luke as she regains her health, and please help their family establish financial security that will help them thrive during her absence.

 

***Note to other Bloggers… If you would like to help by writing a blog, Give Forward is willing to donate $ to this fundraiser for each blog post written and shared about Melanie’s fundraiser. For more information, leave a comment or send a message to us.

Posted in Advocacy, Autism, Hope, Medical | Tagged , , , , , | Leave a comment

Vaccination: A Conversation, Pittsburgh, PA

Yesterday, I had the amazing opportunity to attend an event in what has to be one of the most beautiful spots in Pittsburgh: The Phipps Conservatory. Surrounded by the most beautiful plants, tress, and flowers: thought leaders, practitioners, and parents gathered to have a conversation about a topic that comes with much emotion and controversy in today’s world.  But instead of arguments, name-calling and disagreement (as happens all too often in cyberspace) the atmosphere was one filled with respect, thoughtful discussion, and support for a parent’s individual right  to determine the best course of care for the health of their child.

The day was filled with a thought-provoking seminar on immunity and how T1 and T2 cellular response differ, and how each are impacted by vaccination, by Dr. Chris Powell, followed by a talk about our genetic differences, methylation cycle abnormalities and susceptibilities by Dr. Noah Erikson. The day culminated with a talk by Barbara Loe Fisher of the National Vaccine Information Center about her own very personal story of her son’s severe reaction to the DPT shot, followed by a history of vaccine legislation in the United States and how that impacts parental rights.  Her keynote address was met with a standing ovation from the packed room of attendees.

The day concluded with 2 panel discussions: A practitioner’s panel, highlighting an MD, RN and ND’s views on vaccination and then a Parent’s panel with 3 moms who all had different experiences with their children: one who experienced mitochondrial disease with her child, one with down’s syndrome, autism and leukemia, and severe autistic regression after MMR vaccine with a third child.  One of the many things I loved about the conference was there was ample time for questions and discussion around all the topics that were discussed. And while no one person could answer all the questions, given the extremely educated audience, it seemed other attendees could easily jump in and answer what they knew about the questions at hand. It was a true respectful CONVERSATION and DISCUSSION.

Patricia Lemer, the organizer of the event, and the author of Outsmarting Autism, concluded the day by highlighting some takeaways from the event:

  • Patricia stressed that we all need to KNOW WHAT A VACCINE injury looks like.

***

Recognizing Vaccine Reaction Symptoms

(from the NVIC website)

If you or your child experiences any of the symptoms listed below in the hours, days or weeks following vaccination, it should be reported to VAERS.  Some vaccine reaction symptoms include:

  • Pronounced swelling, redness, heat or hardness at the site of the injection;
  • Body rash or hives;
  • Shock/collapse;
  • High pitched screaming or persistent crying for hours;
  • Extreme sleepiness or long periods of unresponsiveness;
  • Twitching or jerking of the body, arm, leg or head;
  • Crossing of eyes;
  • Weakness or paralysis of any part of the body;
  • Loss of ability to roll over, sit up or stand up;
  • Loss of eye contact or awareness or social withdrawal;
  • Head banging or onset of repetitive movements (flapping, rubbing, rocking, spinning);
  • High fever (over 103 F)
  • Vision or hearing loss;
  • Restlessness, hyperactivity or inability to concentrate;
  • Sleep disturbances that change wake/sleep pattern;
  • Joint pain or muscle weakness;
  • Disabling fatigue;
  • Loss of memory;
  • Onset of chronic ear or respiratory infections;
  • Violent or persistent diarrhea or chronic constipation;
  • Breathing problems (asthma);
  • Excessive bleeding (thrombocytopenia) or anemia.

***

  • Patricia highlighted the NVIC’s brochure: Ask 8 Before you vaccinate- stressing that a sick child or one that is on antibiotics should never be vaccinated while they are sick.
  • Patricia reminded parents that Acetaminophen can lower a person’s glutathione making it more difficult for the person to detoxify, and therefore it may not be the best choice to be given before (or after) vaccination.
  • Patricia stressed the importance of eating REAL FOOD and that for children who are damaged, the nutrition they get from food (even real food) may not be enough, so supplementation may be necessary.
  • Patricia declared a CALL TO ACTION- to become vaccination educators and to join NVIC’s advocacy portal.

My day ended with a stroll through the breathtaking gardens of Phipps and a view    a-top Mount Washington, a perfect ending to a thought-provoking & intellectually stimulating day.

Posted in Advocacy, Conference, Genetics, Medical, Methylation, Mitochondrial Disease, Mitoxic, Research, Toxins | Tagged , , , , , , , , | 1 Comment

Mommy Book Report: The Spark: A Mother’s Story of Nurturing, Genius, and Autism

 

 

The Spark: A Mother’s Story of Nurturing, Genius, and Autism

I picked up this book at the library almost by accident. I was perusing the special needs and health sections and the title jumped out at me- Genius and Autism in the same sentence? … hmmm, a concept which I believe with such passion in my heart: that these children who are diagnosed with Autism do in fact have genius like qualities (albeit many are trapped within those who are non-verbal, or masked and subdued by physical, medical illness that is labeled as Autism), but I had NEVER read these words in the same sentence since years ago in middle school when I completed a term paper on May’s Boy and Idiot Savants (a term rarely used now, but meaning a person who is considered to be mentally handicapped but displays brilliance in a specific area, especially one involving memory).  This amazing book brought me full circle… with the beautiful story told by a mother, Kristine Barnett, as she, like many of us, struggle to help our children reach their full potential.

Simply put this is a book about a nonverbal child, Jake, who at 3 was disconnected from his world and diagnosed with autism. It is about a mother who was a day care owner by day and a warrior mother by night, never giving up on her son. What transpires over the course of this book… is nothing short of amazing, as Jake is discovered to have a genius IQ and unbelievable abilities in math, astrophysics and physics.

So as to not spoil the whole story… I will simply leave you with this (and a few links for future reference): This story struck an accord with me because it embodied the love a mother has for her child and her determination to fight with all her might to bring him back to her world, while never loosing site of the fact that he is a child and should relish in childhood! It also struck me because I feel the lines between autism (or ASD) and Giftedness have been blurred over time, severely limiting many of these children in their potentials to grow because they are labeled very young.

 

Here are a few links should you want to learn more about this amazing family:

Jake’s Wikipedia entry 

Jake giving a TED talk

Jake and family on 60 minutes

 

 

Posted in (Mommy) Book Report | Tagged , , , , , , , , , , | Leave a comment

Where is the Mitoxic Mercury?

So since writing this post about Mercury and Mitochondrial toxicity. I have gotten quite a few comments saying, “but they took the Mercury OUT of the vaccines, so it is really not an issue”. Well yes, and no.. and mercury in vaccines is not the only source of mercury you may need to be concerned with.

10 Mercury Exposures you can avoid

(organic, inorganic and elemental or metallic)

1. Vaccination- Mercury in the form of thimerisol still exists in seasonal influenza (flu) vaccines.  Consider boosting your Vitamin D levels, it can be more effective than the flu shot.

2. Fish- Mercury in the form of methyl mercury can be found in many fish. Here are a number of lists (here and here) showing which fish may contain the highest amounts, that you may want to consider avoiding.

3. Pharmaceutical applications- Many ear, nose and eye drugs contain mercury. A complete list maintained by the FDA can be found here.

4. Vapors- The quicksilver form of mercury has harmful vapors as is noted in this 1926 account of a scientist who shares his health issues after occupational exposure. Of course nearly 100 years later this is well known and one reason that mercury thermometers are no longer used, perhaps.

5. Plasma derived sources- Rhogam shots  and anti-venom contain thimerosal as well, more details on the FDA site can be found here.

6. Coal Burning sources- Coal-burning power plants are the largest human-caused source of mercury emissions to the air in the United States, accounting for over 50 percent of all domestic human-caused mercury emissions (Source: 2005 National Emissions Inventory).

7. Dental Amalgams- “A potential source of exposure to metallic mercury for the general population is mercury released from dental amalgam fillings. An amalgam is a mixture of metals. The amalgam used in silver-colored dental fillings contains approximately 50% metallic mercury, 35% silver, 9% tin, 6% copper, and trace amounts of zinc. When the amalgam is first mixed, it is a soft paste which is inserted into the tooth surface. It hardens within 30 minutes. Once the amalgam is hard, the mercury is bound within the amalgam, but very small amounts are slowly released from the surface of the filling due to corrosion or chewing or grinding motions. Part of the mercury at the surface of the filling may enter the air as mercury vapor or be dissolved in the saliva. The total amount of mercury released from dental amalgam depends upon the total number of fillings and surface areas of each filling, the chewing and eating habits of the person, and other chemical conditions in the mouth. Estimates of the amount of mercury released from dental amalgams range from 3 to 17 micrograms per day. The mercury from dental amalgam may contribute from 0 to more than 75% of your total daily mercury exposure, depending on the number of amalgam fillings you have, the amount of fish consumed, the levels of mercury (mostly as methylmercury) in those fish, and exposure from other less common sources such as mercury spills, religious practices, or herbal remedies that contain mercury.” (source)

8. High fructose corn syrup- “A peer-reviewed study published in Clinical Epigenetics in 2012 set out to find out why the autism rates were so different for the US and Italy. After comparing a variety of variables, they concluded that one reason may be the drastic differences between consumption of High Fructose Corn Syrup (HFCS). According to the study, U.S. per capita consumption of HFCS in 2009 was 35.7 pounds per year. The study goes on to state, “…The Mercury Toxicity Model shows the HFCS characteristics most likely contributing to autism include the zinc-depleting effect that comes from consuming HFCS and certain food colors found in processed foods, and the additional Hg [mercury] exposure that may occur from the low Hg concentrations sometimes found in HFCS as a result of the manufacturing process.” The study concludes that, “A comparison of autism prevalence between the U.S. and Italy using theMercury Toxicity Model suggests the increase in autism in the U.S. is not related to mercury exposure from fish, coal-fired power plants, thimerosal, or dental amalgam but instead to the consumption of HFCS. Consumption of HFCS may lead to mineral imbalances, including Zn [zinc], Ca [calcium] and P [phosphorus] loss and Cu [copper] gain and is a potential source of inorganicmercury exposure.” (Source)

Another article from 2009 looking at Mercury found in HFCS.

9. Light Bulbs- Flourescent, CFL’s: “Small amounts of mercury can be released into the environment when CFLs break, or if they are improperly disposed of at the end of their useful lives. Despite these emissions, the use of CFLs actually helps reduce total mercury emissions in the U.S. because of their significant energy savings.  Using energy-saving CFLs reduces demand for electricity, which in turn reduces the amount of coal burned by power plants, which reduces emissions of mercury when the coal is burned.” (source: EPA)

Acrodynia: Exposure to Mercury From Fluorescent Light Bulbs (source)

Medical attention was sought for a 23-month-old toddler because of anorexia, weight loss, irritability, profuse sweating, peeling and redness of his fingers and toes, and a miliarial rash. The diagnosis was mercury poisoning, and an investigation of his environment disclosed that he had been exposed to mercury from broken fluorescent light bulbs. Acrodynia resulting from fluorescent bulbs has not been previously reported.

10. Cosmetics and Skin Products:  “Federal health officials are warning consumers not to use skin creams, beauty and antiseptic soaps, or lotions that might contain mercury.

 

The products are marketed as skin lighteners and anti-aging treatments that remove age spots, freckles, blemishes and wrinkles, says Gary Coody, national health fraud coordinator in the Food and Drug Administration’s Office of Regulatory Affairs. Adolescents also may use these products as acne treatments, adds Coody. Products with this toxic metal have been found in at least seven states.

Texas health officials say samples of face cream they tested contained mercury up to 131,000 times the allowable level. And a teenager in southern Texas who used a mercury-containing skin cream was recently hospitalized for mercury poisoning.

In Northern California, a 39-year old woman had more than 100 times the average amount of mercury in her urine and had symptoms of mercury poisoning, according to the California Department of Public Health. For three years, the woman and her husband had been using an unlabeled mercury-containing face cream that was brought into the U.S. from Mexico by a relative. Several other family members who did not use the cream, including a four-year-old child, also had elevated levels of mercury in their bodies.

Virginia, Maryland, and New York have also seen cases of elevated mercury levels in people exposed to skin products containing mercury. In Minnesota, 11 of 27 imported skin products taken from store shelves contained mercury.”(Source FDA)

Minnesota banned mercury in cosmetics in 2007- story here.

Mercury creams for skin lightning were even discussed at the IACC (Autism Coord Committee at Federal Govt. Level) as possible cause of the Somalian Autism Cluster in Minneapolis page 282-

 

Editor’s note- Many products contained mercury and have now changed formulations reducing or removing mercury from their product- one being contact lense solutions (hypersensitivity research here).  Here is a list from 2000 noting some other products containing mercury containing compounds that may or may not still contain them 14 years later!

Posted in Autism, Autism Prevention, Household chemicals, Medical, Mitochondrial Disease, Mitoxic, Toxins | Tagged , , , , , , , , , , | 2 Comments

MITOXIC- Why Mercury may not be good for any of us, especially those with Mitochondrial Disease

Salk bottle merthiolate

Yesterday, I attended a talk by the son of Jonas Salk about the history of the Pittsburgh area in the research and the creation of the polio vaccine. This reagent bottle was displayed on the artifacts table along with other memorabilia from the Shalom Research Farm where many animal trials and experiments for the vaccine were being done. There was one word on the label of the bottle, which gave me pause:  MERTHIOLATE.

As a chemist, the word was instantly recognizable an acronym for thimerisol, a mercury containing compound. If you have been around the autism community for a bit, you know that thimerisol and mercury containing compounds are a hot topic, but in reality it should be of concern for others, I believe. Including those in the mitochondrial community and beyond. It appears to be MITOXIC and here is some supporting evidence of why…

mitoxic

Before I provide some of the references that I have come across, I believe it is important to define 3 types of mercury: Elemental, Inorganic and Organic Mercury.

  • Elemental Mercury is known best as quicksilver and exists as liquid metallic mercury at room temperature, it is poorly absorbed through skin and GI contact (except perhaps for those with ileus).
  • Inorganic Mercury simply means the mercury atom has combined with another element which is non- carbon containing. Examples of inorganic mercury include: mercuric chloride, mercuric acetate, mercuric sulfide.
  • Organic Mercury or Organomercury simply means that the mercury molecule is bound to a carbon (and other functional carbon containing groups). For example, Ethyl Mercury and Methyl Mercury are both organomercury compounds, as is Thimerisol which is bound to an ethyl group as well as a thiol group.

This paper provides a convincing argument for why Mitochondrial disease patients (and really all of us) may want to be aware of our exposure to mercury, particularly in this instance thimerisol, and organomercury compound: (one definition Astrocytes=most abundant cell of the HUMAN BRAIN)

Thimerosal-Derived Ethylmercury Is a Mitochondrial Toxin in Human Astrocytes: Possible Role of Fenton Chemistry in the Oxidation and Breakage of mtDNA.

AuthorsSharpe MA, et al.
J Toxicol. 2012;2012:373678. doi: 10.1155/2012/373678. Epub 2012 Jun 28.

Affiliation: Department of Neurosurgery, The Methodist Hospital, 6565 Fannin Street, Houston, TX 77030, USA.

Additionally, this paper is annotated on the ICHNFM site.

Some Quotes from the PAPER:

Abstract:

Thimerosal generates ethylmercury in aqueous solution and is widely used as preservative. We have investigated the toxicology of Thimerosal in normal human astrocytes, paying particular attention to mitochondrial function and the generation of specific oxidants. We find that ethylmercury not only inhibits mitochondrial respiration leading to a drop in the steady state membrane potential, but also concurrent with these phenomena increases the formation of superoxide, hydrogen peroxide, and Fenton/Haber-Weiss generated hydroxyl radical. These oxidants increase the levels of cellular aldehyde/ketones. Additionally, we find a five-fold increase in the levels of oxidant damaged mitochondrial DNA bases and increases in the levels of mtDNA nicks and blunt-ended breaks. Highly damaged mitochondria are characterized by having very low membrane potentials, increased superoxide/hydrogen peroxide production, and extensively damaged mtDNA and proteins. These mitochondria appear to have undergone a permeability transition, an observation supported by the five-fold increase in Caspase-3 activity observed after Thimerosal treatment.

Other excerpts:

Thimerosal is a preservative that is widely used in medical products, including as a preservative in vaccines, immunoglobulin preparations, skin test antigens, antivenins, ophthalmic and nasal products, and tattoo inks, and is composed of 49.6 percent ethylmercury by weight [1]. The widespread use of Thimerosal exposes many to its potential toxic effects, especially 𝑖 𝑛 𝑢 𝑡 𝑒 𝑟 𝑜 and in neonates. “

“We postulate that this compound is preferentially taken up into the mitochondria of NHA causing damage to the respiratory chain and subsequent ROS production. The damage of a cell’s mitochondria leads to the activation of the apoptotic cascade and subsequent cell death [34242631]. This may be clinically relevant in the setting of a patient who harbors a known or unknown mitochondrial disorder. In the setting of a mitochondrial disorder, a specific mitochondrial toxin could be life altering or life threatening.”

“The results of this study suggest that ethylmercury is a mitochondrial toxin in human astrocytes. We believe that this finding is important, particularly since the number of diseases in which mitochondrial dysfunction has been implicated are rapidly increasing.”

Another Journal Article regarding Mito and Mercury:

Mitochondrial dysfunction and molecular pathways of disease

“Toxic metals, especially mercury, generate many of their deleterious effects through the formation of free radicals, resulting in DNA damage, lipid peroxidation, depletion of protein sulfhydryls (eg, glutathione) and other effects (Valko et al., 2005 ). These reactive radicals include a wide-range of chemical species, including oxygen-, carbon-, and sulfurradicals originating from the superoxide radial, hydrogen peroxide, lipid peroxides, and also from chelates of amino acids, peptides, and proteins complexed with the toxic metals (Valko et al., 2005 ). One major mechanism for metals toxicity appears to be direct and indirect damage to mitochondria via depletion of glutathione, an endogenous thiol-containing (SH-) antioxidant, which results in excessive free radical generation and mitochondrial damage (Sanfeliu et al., 2001 ). Anecdotally, Dr. Neustadt, in his clinic, frequently observes an elevation of pyroglutamate, a urinary organic acid that is a specific marker for glutathione depletion (Bralley and Lord, 2001 ), in patients with confirmed mercury toxicity. Not surprisingly, these patients also complain of fatigue, a hallmark symptom of mitochondrial damage.”

And another journal article talking about the hypersensitivity to Mercury in Autism and siblings:

B-Lymphocytes from a Population of Children with Autism Spectrum Disorder and Their Unaffected Siblings Exhibit Hypersensitivity to Thimerosal

The role of thimerosal containing vaccines in the development of autism spectrum disorder (ASD) has been an area of intense debate, as has the presence of mercury dental amalgams and fish ingestion by pregnant mothers. We studied the effects of thimerosal on cell proliferation and mitochondrial function from B-lymphocytes taken from individuals with autism, their nonautistic twins, and their nontwin siblings. Eleven families were examined and compared to matched controls. B-cells were grown with increasing levels of thimerosal, and various assays (LDH, XTT, DCFH, etc.) were performed to examine the effects on cellular proliferation and mitochondrial function. A subpopulation of eight individuals (4 ASD, 2 twins, and 2 siblings) from four of the families showed thimerosal hypersensitivity, whereas none of the control individuals displayed this response. The thimerosal concentration required to inhibit cell proliferation in these individuals was only 40% of controls. Cells hypersensitive to thimerosal also had higher levels of oxidative stress markers, protein carbonyls, and oxidant generation. This suggests certain individuals with a mild mitochondrial defect may be highly susceptible to mitochondrial specific toxins like the vaccine preservative thimerosal.

 A few More articles confirming a risk of thimerisol to mitochondria:

Mitochondrial mediated thimerosal-induced apoptosis in a human neuroblastoma cell line (SK-N-SH).

Thimerosal induces neuronal cell apoptosis by causing cytochrome c and apoptosis-inducing factor release from mitochondria.

Merthiolate hypersensitivity and vaccination.

“However, even when this precautionary measure is taken, local reactions can be expected in such a high percentage of merthiolate-sensitive persons that merthiolate in vaccines should be replaced by another antibacterial agent.”

A video showing how Mercury impacts Brain Neurons:

https://www.youtube.com/watch?v=Z1RHWfJSo6w

Interestingly these journal articles are all focusing on Ethylmercury and thimerisol (merthiolate) toxicity to one’s mitochondria.  According to the American Academy of Pediatrics position statement from 2001:

“Mercury in all of its forms is toxic to the fetus and children, and efforts should be made to reduce exposure to the extent possible to pregnant women and children as well as the general population. Pediatricians can contribute to the effort of decreasing the amount of mercury in the waste stream by phasing out mercury-containing devices, such as thermometers and sphygmomanometers, from their offices and other medical facilities and encouraging parents to remove mercurythermometers from their homes.”

And the CDC has this to say about Thimerisol:

Screen Shot 2014-08-04 at 11.43.39 AM

Source of screen shot

Scrolling down the page sourced above you can find this explanation on the CDC’s website:

Screen Shot 2014-08-04 at 11.43.13 AM

This seems to imply that methylmercury and elemental mercury are MORE TOXIC to a human body than thimerisol/merthiolate which it says breaks down to ethyl mercury and thioSALICYLATE which are “easily eliminated”. Hmmmmm not a word about mitochondrial disease or mitochondrial dysfunction or mitochondrial toxicity. Thiosalicylate… hmmmm wonder if you have problems breaking down salicylates if thiosalicylate could be toxic to the human body in that case… or is it a case of chicken and the egg~ did too much mercury exposure cause hypersensitivity to salicylates??

So if METHYLMERCURY is more toxic…what does it do to your mitochondria??

Role of calcium and mitochondria in MeHg-mediated cytotoxicity.

“Methylmercury (MeHg) mediated cytotoxicity is associated with loss of intracellular calcium (Ca2+) homeostasis. The imbalance in Ca2+ physiology is believed to be associated with dysregulation of Ca2+intracellular stores and/or increased permeability of the biomembranes to this ion. In this paper we summarize the contribution of glutamate dyshomeostasis in intracellular Ca2+ overload and highlight the mitochondrial dysfunctions induced by MeHg via Ca2+ overload. Mitochondrial disturbances elicited by Ca2+ may involve several molecular events (i.e., alterations in the activity of the mitochondrial electron transport chain complexes, mitochondrial proton gradient dissipation, mitochondrial permeability transition pore (MPTP) opening, thiol depletion, failure of energy metabolism, reactive oxygen species overproduction) that could culminate in cell death.”

Methylmercury inhibits electron transport chain activity and induces cytochrome c release in cerebellummitochondria.

Mechanisms of methylmercury-induced neurotoxicity: evidence from experimental studies.

Methylmercury neurotoxicity is associated with inhibition of the antioxidant enzyme glutathione peroxidase.

Modulation of methylmercury uptake by methionine: prevention of mitochondrial dysfunction in rat liver slices by a mimicry mechanism.

Hmmm…. Methylmercury doesn’t look much better for any of our mitochondria! Soooo where does that leave us? All forms of mercury look pretty toxic to one’s mitochondria, so say if you are born with a mitochondrial disorder or mitochondria that just aren’t working at 100%, or perhaps you have faulty methylation, perhaps an MTHFR mutation, or impaired glutathione synthesis. Say you are a baby and you receive quite a few vaccines in the first year, most of them containing aluminum because the mercury has been removed, but you also get a flu shot that still contains mercury. Could this exposure to organomercury trigger a metabolic crisis or cause more damage to your mitochondria than you were already born with? Possibly? Probably?  With the links between mitochondrial disease and autism, is it possible mercury can be linked to autism?. Thimerisol doesn’t cause autism as the CDC and that thimerisol does not cause harm as other groups conclude… but there is a body of evidence that shows that thimerisol (and other mercury compounds) does harm and damage mitochondria, and impaired mitochondrial function (OXPHOS) has been implicated as a cause of autism… so if A=B  and B=C   does A=C??  The controversy will continue to rage on for years, with new books coming on the market as we speak,  more will contest that it is all just a coincidence. Maybe it is? Maybe it isn’t? It is up to each of us as parents to do our own research and make an educated decision for our family.

Additional resources:

Research: Mercury and Autism – Accelerating Evidence? 

The plausibility of a role for mercury in the etiology of autism: a cellular perspective

Video about Mercury and Autism

(from Dr. Haley, retired professor of Chemistry, University of Kentucky)

part 1

http://www.youtube.com/watch?v=GQYISvsgq6s

 

PINK’s Disease

What is Pink’s Disease?

“Pink Disease was and still is a very nasty disease. The severity and duration of the disease vary. In the English speaking western world, the age of onset is usually between 6-14 months.

The most common KNOWN cause of Pink Disease was mercury containing teething powders. In the English speaking Western World, the use of mercury in teething powders was banned in the 1950’s. There were, and still are, numerous other household, industrial, natural, agricultural and medical sources of mercury in the environment.” (source)

Ancestry of Pink Disease (Infantile Acrodynia) Identified as a Risk Factor for Autism Spectrum Disorders

 
 

Video: From Acrodynia to Autism: Mercury Across Generations, More Evidence of Harm

http://www.youtube.com/watch?v=8UAVBRg8wQ8&feature=share&list=UU1aghAIieD1j7RYCl3xehWg

 

Dr. Mark Hyman shares his personal story of mercury toxicity and mitochondria.

 

Editor’s Note- After many comments about mercury being removed from all vaccines…I felt it important to write this post- http://babyfoodsteps.wordpress.com/2014/08/16/where-is-the-mitoxic-mercury/

Posted in Mitochondrial Disease, Mitoxic, Toxins | Tagged , , , , , , , , , , , , , , , , , | 4 Comments

The Lady A Shopping List~ for Grandma

Screen Shot 2014-07-25 at 10.50.07 PM

In a few weeks, Lady A is off to grandma’s house. What is different this year, is mommy is not going for the routine 2-3 days at the beginning of every trip to the grandparents, to shop, cook, slice, dice and prepare much of her food ahead of time! What a big milestone! Which leads me to this post… a virtual visual repository for the foods that we have found Lady A can tolerate and those which she can safely metabolize in her diet… all to hopefully make it easier for grandma (or anyone who needs to in the future) to go shopping for her prior to her arrival!

Meat/Proteins

Eggs (cage free/ free range/organic)- she enjoys the egg whites only recently, brother will eat the yolks scrambled!

Organic Chicken

Organic Ground Turkey

Organic Grass Fed Beef

Applegate Turkey and Chicken Hotdogs

Applegate Organic OVEN ROASTED Turkey Breast (NOT SMOKED (bc it is high in phenols) and NOT CHICKEN (bc it contains honey))

Chicken Maple Sausages

Raw Organic Cashew Butter

Applegate  Organic or Natural Turkey Bacon

 

Fruits

(all ORGANIC if possible)

Mango

Banana (max 1 every other day)

Green Grapes (5-10 every other day due to being higher in phenol)

Green apples (peeled)

Watermelon (1 slice every other day due to being higher in phenol)

Pears (peeled)

Papaya

 

Veggies 

(all ORGANIC if possible/ frozen is fine)

Yellow and green zucchini squash

Green beans

Peas

Butternut squash (with brown sugar sprinkles)

ORGANIC only Corn (non-GMO)

Russet potatoes

 

Flours/Grains/Baked Goods/Cereal

Organic Brown Rice

Brown Rice Pastas- tikiyada and shape pasta

Rice Mum-Mums- Banana or Plain

Glutino Crakers

Namaste Spice Cake Mix

Namaste Vanilla Cake Mix

Namaste All Purpose Flour

My Bread (whole foods GF freezer section)

King Arthur Bread mix

GF Oatmeal

Nature’s Path Oaty Bites

Nature’s Path O’s

GF Bisquick (not ideal bc it is GMO, but will work for pancakes and waffles on the go)

 

Oils/Seasonings/Sugar/Treats

Spectrum Shortening

Organic Sunflower Oil

Organic Safflower Oil

Pink “shake- shake” (ie Himalayan Salt) 

Brown Sugar

Powdered Sugar

Vanilla Alcohol Free

Yummy Earth Lolly Pops

Yummy Earth Gummy (2-3 gummy per day max)

Pomegranate Juice

Organic Lemonade (dilute 1/4 juice to 2/4 water)

Organic Rice Milk

 

A few of her favorite Recipes and Treats:

Oatmeal Cookies

Dougnuts

Pear Crisp

 

 

Posted in Uncategorized | 1 Comment

It’s All about Energy!

In the past couple years I have learned A LOT about biochemical energy! That is… energy in the form of ATP which is the form our body uses and which is produced by our mitochondria.  Being a chemist and taking my share of physics classes in college, I am well aware that this is not the ONLY kind of energy which exists in our world.. remember potential energy, kinetic energy, quantum energy, electrical energy, chemical energy, etc?

Screen Shot 2014-07-15 at 10.14.58 AM

So when I heard about this conference that the Thinking Moms Revolution is hosting TOMORROW (July 16, 2014), I was intrigued.  Can mitochondrial disease and other medical conditions (including autism) be improved by other forms of energy medicine? In our quest to find answers for our little gal in mainstream medicine, I have often been curious that we see a neurologist and a geneticist to diagnose and treat her mitochondrial condition. In mainstream medicine there is NO Energy specialist, NO energyologist, NO mitochondriologist… instead energy in this framework is considered a symptom (either too low or too high). And as much as western medicine likes to claim superiority over eastern medicine… eastern medicine does at least embrace energy (qi) in their healing modalities… hmmm.  In speaking with many other mothers with children with autism and many other conditions, I know that they have had numerous improvements with their children by exploring these various healing modalities. Often times my scientific brain kicks in and says, “Where is the science, is there proof this works?”… and then I realize many many things that were supposed to “work” for our daughter have not, we truly have an N=1, as does each and every parent that is trying to help their child get better! What works for one family may or may not work for another. Focusing on finding non-invasive therapies and treatments that cause no harm to already fragile children is paramount!

So being new to all this and not really knowing much of anything about energy healing, I plan to do what I have done with every other therapy, treatment, and intervention that has been suggested to us thus far along our healing journey: I will learn as much as I can about it, research it with an unbiased perspective, pray and trust my gut as to what resonates for our family. I hope you will join me in learning more!

 

 

** editor’s note:  In exchange for writing this blog post about the conference I was given a discounted admission to the conference, but for the reasonable cost of $40 and a year access to all the speakers, I would have paid full price to have access to learning new information that may be able to help our family,  anyhow!! :)

Posted in Autism, Conference, Mitochondrial Disease | Tagged , , , , , , | Leave a comment

Lady A’s Doughnuts- Gluten Free / Casein Free / Soy Free / Low Salicylate

The other day I came across something I wrote when I first started this blog… and it made me pause and realize just how much this journey (and this blog) have transformed and how much we (and I) have morphed! This blog was originally meant to be a repository for food information for Lady A, so that if (God-forbid) something happened to me, others could cook and take care of her. So this post goes back to that original intention: so her daddy, grandma or maybe even her brother (wishful thinking?) can make her these yummy doughnuts someday!

As you can see from the picture… they took a little work! The key was putting 1 teaspoon of batter into the molds and not 1 tablespoon! Viola!

10415600_10204351284360825_3230078277128122667_n
Ingredients:
1 cup of flour (we use Namaste Perfect Flour Blend)
1 tablespoon baking powder  (aluminum free!!)
pinch of salt (Himalayan)
1/2 cup of sugar (organic)
1 egg (free range)
1/2 cup milk (Organic Rice Milk)
1/2 teaspoon vanilla extract (Alcohol Free Frontier Brand)
1/2 tablespoon Organic Sunflower oil

Directions:
Blend flour, baking powder, salt & sugar
in another bowl blend egg, milk, vanilla, and oil
pour wet mixture into dry mixture.
pour 1 TEASPOON into donut each donut holder.

Cook in big boss grill 5 minutes.

Dust with Organic Powdered Sugar. and ENJOY!

Posted in Recipes, Snacks | Tagged , , , , , , , | 4 Comments

#mito2014 Mitochondrial Symposium Top 10 Takeaways

Top 10 Takeaways

from

the UMDF 2014

Mitochondrial Disease Symposium

in Pittsburgh PA, June 6-8, 2014

 

1. Scientific Meeting- Leonid Sazanov presented specifically on the structure of complex 1. He commented also on how the well-known cplx 1 inhibitor ROTENONE  (pesticide) works. I was a bit surprised to learn that the structure of complex 1 was only recently elucidated. For those who are new to the term: Complex 1, watch this short video for a primer in how complexes 1-5 make energy (ATP) in our mitochondria.

Tweet- #Mito2014 Leonid Sazanov speaking about the importance of Complex 1 in#LHON#parkinsons and #cancer. All 44 subunits of it!!

2. Scientific Meeting – Matthew Hirschey (twitter- @hirscheylab) spoke about Protein modification and mito. He discussed acetylation and hyperacetylation and introduced newer modifications- malonylation, succinylation and glutarylation. He also introduced (at least is was new to me!!) a class of proteins calls SIRTUINS. The Deacylases (SIRT 3,4,5) have new-found impact on mitochondrial dysfunction.

tweet: #mito2014 Hirschey from Duke gene may be fine, protein may be fine but the group you are putting on the protein may be wrong… i.e.. Acetylation. Then talked about sirtuin and how it regulates de-acetylation

3. Mitochondrial Disease and Dysfunction is linked to MANY other fields of medicine specifically  CANCER and CARDIOLOGY. Michael Lotze gave a talk about mitochondria and cancer cells dying a wrongful death (mentioning HMGB1 in innate and adaptive immunity) and Stephen Archer gave an overview of new therapeutic targets for Cancer and Cardiovascular Disease (focusing on the DRP1  protein that mediates fission).

4. Scientific Meeting- Parkinson’s disease is a disease process that involves the mitochondria.  In mouse models, giving the mice chronic doses of ROTENONE induces Parkinson’s like symptoms.  ROTENONE is a potent complex 1 inhibitor, it is also an ORGANIC pesticide (NOT a rat poison as was conveyed in the family session) that has recently been limited in the United States. (good overview or Rotenone use here)

This piece of information BEGS to question… what is Rotenone and other pesticides impact on individuals with Complex 1 (and other mitochondrial deficiencies)?? I urge the UMDF and the mitochondrial scientific community to have this question at the top of their agenda at NEXT YEAR’s meeting~ WHAT ENVIRONMENTAL EXPOSURES MAKE MITOCHONDRIAL DISEASE SYMPTOMS BETTER or WORSE for Patients?

(some other research papers I came across regarding rotenone/mitochondrial/parkinson’s link-

http://www.ncbi.nlm.nih.gov/pubmed/19042691

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1175899/

http://www.sciencedirect.com/science/article/pii/S0969996109001685

Tweets:

#mito2014 environmental links to Parkinsons- Rotenone (acute and chronic) MPTP all been found to impact mitochondrial function.

#mito2014 focused on an #environmetal #toxin model- chronic rotenone exposure in cell culture

#mito2014 If you grow HeLa cells in galactose and glutamine they become dependant on their mitochondria for energy vs. glucose medium.

autism panel5. Family Meeting-Mitochondrial disease and Autism are intimately intertwined. Dr. Bob Naviaux shared his research about purine signaling and cell danger response and  how antipurinergic therapy (suramin) increases mitochondrial function in a mouse model of autism (reference here), Dr. Richard Frye shared his research about oxidative stress induced mitochondrial dysfunction in a subset of cell lines from autistic children (a more thorough discussion of this research can be found here), and Dr. Doug Wallace talked about changes in mitochondrial DNA heteroplasmy and its impact on inflammation as well as halogroups and which ones may be more at risk for autism. You can listen to the talk replay of this panel here.

Questions from this session inquired about what types of “environmental toxins” would be important to avoid for a child with mito and autism. Dr. Bob Naviaux was kind enough to provide this slide (and give his permission for sharing) that highlights 12 tips that families can focus on:

Slide1-2

Slide thanks to Dr. Naviaux

#mito2014 Haplogroups J, N, V, T, T2 all increased risk. some have almost as big effect as sex bias (boys vs. girls)

#mito2014 subtle changes in heteroplasmy in mitochondrial mutant can cause phase change in symptoms – such as in response to inflammation and regression

6. Family Meeting- Dr. Bruce Cohen of Akron’s Children’s Hospital gave this presentation on Dysautonomia and Mitochondrial disease. The biggest take away I had was that dysautonomia is definitely linked to mito but no one really knows if it is just another symptom or a cause unto itself- chicken or the egg!?  Cohen spent much of the talk focusing on primary, secondary and possible mitochondrial disease, with the bulk of his patient population (including cases he has recently re-classified from mitochondrial disease to possible mito), over 80% being possible mitochondrial disease.

tweets:

#mito2014 Cohen estimates (in his patient population) 15% primary mitochondrial disease (genetic confirmation) 1% secondary and the rest (over 80%) are “possible” mitochondrial disease

#mito2014 Cohen explains reclassification of patient who in 1992 was complex 1 with MELAS like mitochondrial disease, to 2013 she is reclassified as possible mitochondrial disease, she doesn’t fit criteria, though he believes in his heart she has it. Takeaway- classification for primary mito has changed over last 20 years.

7. Muscle Biopsy is NOT the gold standard anymore. Even with a positive muscle biopsy for mitochondrial disease, a primary mito diagnosis will not necessarily be given. Both Cohen and Parikh noted this in their talks. Dr. Sumit Parikh’s overview of Mito talk from this year’s symposium can be watched here.

8.Family Meeting- Dr. McCormack, CHOP endocrinologist This doctor gave quite a few pearls of wisdom about how the mitochondrial system and the endocrine system interact (talk can be viewed here).

#mito2014 high levels of steroids over a long period of time are TOXIC to#mitochondria look at- steroid myopathy in ICU patients

#mito2014 Symptoms of adrenal insufficiency low blood sugar, low blood pressure, low sodium levels esp with illness. FIRST STEP of hormone production is IN the mitochondria

#mito2014 high levels of steroids over a long period of time are TOXIC to#mitochondria look at- steroid myopathy in ICU patients

#mito2014 a lot of seizure meds disrupt vitamin D metabolism

#mito2014 Parathyroid dysfunction if calcium level are abnormal – consider 25-OHD level (vitamin D levels) optimal should be ABOVE 30 but higher is better..

9. Family Meeting- Clinical trials update- the leader in the race to a treatment for mito is still EPI-743 and an overview was given of the current clinical trials and hopefully FDA approval in the coming years. A few other smaller trials are popping up but they are narrow in focus (MELAS, etc). If the clinical update video is made available I will post it here.

10.Family Meeting- Medical Child Abuse and Munchausen By Proxy allegations and the impact of the Justinia Pellitier case has sent an earthquake (and many lingering shock waves) through the mitochondrial community. Dr. Korson (Justina’s doctor who diagnosed her with mitochondrial disease) gave this very informative talk about “Navigating the Challenges and Risks in Patient Care (in a world still learning about mitochondrial disease)” which the replay can be found here.

 

Plus +1

11. Dr. Korson presented a great talk on significance of specific lab values in mitochondrial disease. So many pearls of wisdom in this talk. (this talk is available for replay here).

 

Dr. Vockley kicked off the scientific session on the first day (along with co-organizer        Dr. Amy Goldstein) by saying this…. and I find it a good summary of the conference as well:

 

#mito2014 Vockley- single gene changes don’t sufficiently describe/account for the phenotype for mitochondrial disease… And mitochondria are complicated!!

I would whole-heartedly agree!! And add… we need to move BEYOND just SINGLE GENES and look much more closely at our ENVIRONMENT and GENE-ENVIRONMENT Interactions!

Editor’s Note- My personal highlight of the symposium was being able to see old friends and meet new ones! Getting to see this dear friend who came all the way from Texas to visit, topped my list! Miss her and her sweet boy! Her blog about the conference can be found here.

Editor’s Note- Here are a few more links that have been added by the UMDF to the video archives:

Scientific Summary Panel

Ask the Mito Doc – Adult 

Ask the Mito Doc- Child

SSI disability and transition from child to adult

 

Posted in Advocacy, Awareness, Genetics, Medical, Mitochondrial Disease, UMDF | Tagged , , , , , , , , , , , , , , , , , , , , | 3 Comments

#mito2014

The United Mitochondrial Disease Symposium is in Pittsburgh this year. Babyfoodsteps will be attending the scientific and some of the family sessions this year.

You can follow along!  HASHTAG: #mito2014Slide1

We will be live tweeting here.

And live “blogging/facebooking” here.

We would love if you would  follow along and share/retweet the info we post to help spread awareness about mitochondrial disease.

Please send us a message or leave a comment if you will be attending the meeting- we would welcome an opportunity to say hello!

Posted in Awareness, Medical, Mitochondrial Disease, Research, UMDF | Leave a comment