WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Tuesday, October 21, 2014

MitoAction and Flu Shot's too? :-(

Today at 9:06 AM Christine Cox, Director of Outreach & Advocacy (MitoAction)

eNewsletter Stationery Header
If you are unable to view the message below, CLICK HERE to view this message on the website

Research Study Opportunity

National Human Genome Research Institute researcher Peter McGuire, M.D. is conducting a study on immune issues in mitochondrial disease and other inborn errors of metabolism. The Metabolism, Infection and Immunity ("MINI") study is ongoing and currently is seeking additional patients with mitochondrial disease to participate.
The NIH is offering seasonal flu vaccines as well as the pneumococcal vaccine to study participants. If a vaccine is received, the participant's response to the vaccine will be measured and shared with the participant or his/her family. Please note that receipt of vaccines is not required for participation in the MINI study.
MitoAction has received the following information about the MINI Study from the NIH:
Overview of the MINI study
Letter about the MINI study and mitochondrial disorders
Information about flu season for patients with mitochondrial disorders and inborn errors of metabolism
To be eligible, participants must:
Be at least 2 years of age
Have a diagnosis of a Mitochondrial Disorder
Be able to travel to the NIH Clinical Center in Bethesda, Maryland
For additional information about the MINI Study, please visit http://www.genome.gov/mini/

Granted, it is pointed out that you don't have to have the vaccine to participate....

Still, if you are like me, the last thing you want to hear again and again and again and again and again... is "Flu Shot".

Commercials, sitcom's, government announcements, schools, pharmacies, it is insane.

On the other hand, there are plenty out there that feel the potential protection for a few age populations makes injecting this shot worth the risks. So maybe these type of emails from patient support non-profits make them feel better about the choice they make to buy these.

On a positive, America is waking up and more and more folks are taking the time to read and assess whether the "possible' protection gains from these are worth the scary risks.

Vitamin D(way safer then flu shots), hand washing(safest!), good rest( great idea for all diseases)and improved nutrition (excellent choice) are the safest options in flu prevention and not only help protect you from the flu, but also help keep your body far happier and healthier.

Just saying.

Mito Vocab:


Via Wiki: Immunotoxicology (sometimes abbreviated as ITOX) is the study of immune dysfunction resulting from exposure of an organism to a xenobiotic. The immune dysfunction may take the form of immunosuppression or alternatively, allergy, autoimmunity or any number of inflammatory-based diseases or pathologies. Because the immune system plays a critical role in host resistance to disease as well as in normal homeostasis of an organism, identificantion of immunotoxic risk is significant in the protection of human, animal and wildlife health.

In the non-adult (embryo, fetus, neonate, juvenile, adolescent) this study is referred to as Developmental Immunotoxicology (commonly abbreviated as DIT). For most toxicants examined to date, the developing immune system exhibits a heightened sensitivity compared with that of an adult. For this reason, DIT screening has applications to human, animal and wildlife health protection.


The term xenobiotics, however, is very often used in the context of pollutants such as dioxins and polychlorinated biphenyls and their effect on the biota, because xenobiotics are understood as substances foreign to an entire biological system, i.e. artificial substances, which did not exist in nature before their ...
Xenobiotic - Wikipedia, the free encyclopedia


From Wikipedia, the free encyclopedia

Ototoxicity is the property of being toxic to the ear (oto-), specifically the cochlea or auditory nerve and sometimes the vestibular system; it is commonly medication-induced. Ototoxic drugs include antibiotics such as gentamicin, loop diuretics such as furosemide and platinum-based chemotherapy agents such as cisplatin. A number of nonsteroidal anti-inflammatory drugs (NSAIDS) have also been shown to be ototoxic. This can result in sensorineural hearing loss, dysequilibrium, or both. Either may be reversible and temporary, or irreversible and permanent.


Nephrotoxicity (from Greek: nephros, "kidney") is a poisonous effect of some substances, both toxic chemicals and medication, on the kidneys. There are various forms of toxicity.
Nephrotoxicity - Wikipedia, the free encyclopedia


via Wikipedia; Aminoglycoside is a medicinal and bacteriologic category of traditional Gram-negative antibacterial therapeutic agents that inhibit protein synthesis and contain as a portion of the molecule an amino-modified glycoside (sugar);[1][2] the term can also refer more generally to any organic molecule that contains aminosugar substructures. Aminoglycoside antibiotics display bactericidal activity against gram-negative aerobes and some anaerobic bacilli where resistance has not yet arisen, but generally not against Gram-positive and anaerobic Gram-negative bacteria.[3] They include the first-in-class aminoglycoside antibiotic streptomycin (images at right) derived from Streptomyces griseus, the earliest modern agent used against tuberculosis, and an example that lacks the common 2-deoxystreptamine moiety (image right, below) present in many other class members. Other examples include the deoxystreptamine-containing agents kanamycin, tobramycin, gentamicin, and neomycin (see below).


Mitochondrial Plasticity:

Mitochondrial biogenesis:

Genetic Toxicology:

From Wikipedia, the free encyclopedia

Single-strand and double-strand DNA damage potentially caused by genotoxins
In genetics, genotoxicity describes the property of chemical agents that damages the genetic information within a cell causing mutations, which may lead to cancer. While genotoxicity is often confused with mutagenicity, all mutagens are genotoxic, however, not all genotoxic substances are mutagenic. The alteration can have direct or indirect effects on the DNA: the induction of mutations, mistimed event activation, and direct DNA damage leading to mutations. The permanent, heritable changes can affect either somatic cells of the organism or germ cells to be passed on to future generations.[1] Cells prevent expression of the genotoxic mutation by either DNA repair or apoptosis; however, the damage may not always be fixed leading to mutagenesis.

To assay for genotoxic molecules, researchers assay for DNA damage in cells exposed to the toxic substrates. This DNA damage can be in the form of single- and double-strand breaks, loss of excision repair, cross-linking, alkali-labile sites, point mutations, and structural and numerical chromosomal aberrations.[2] The compromised integrity of the genetic material has been known to cause cancer. As a consequence, many sophisticated techniques including Ames Assay, in vitro and in vivo Toxicology Tests, and Comet Assay have been developed to assess the chemicals' potential to cause DNA damage that may lead to cancer.


(Via Merriam Weber)


: a branch of pharmacology concerned with the application of immunological techniques and theory to the study of the effects of drugs especially on the immune system
: the immunological effects and significance of a particular drug (as morphine)


From Wikipedia, the free encyclopedia
Toxicokinetics (often abbreviated as 'TK') is the description of what rate a chemical will enter the body and what happens to it once it is in the body.


From Wikipedia, the free encyclopedia
A mycotoxin (from Greek μύκης (mykes, mukos) "fungus" and τοξικόν (toxikon) "poison")[1][2] is a toxic secondary metabolite produced by organisms of the fungi kingdom, commonly known as molds.[3] The term 'mycotoxin' is usually reserved for the toxic chemical products produced by fungi that readily colonize crops.[4] One mold species may produce many different mycotoxins, and the same mycotoxin may be produced by several species.[5]



From Wikipedia, the free encyclopedia

Depiction of the human body and bacteria that predominate
A microbiome is "the ecological community of commensal, symbiotic, and pathogenic microorganisms that literally share our body space."[1][2] Joshua Lederberg coined the term, arguing the importance of microorganisms inhabiting the human body in health and disease. Many scientific articles distinguish "microbiome" and "microbiota" to describe either the collective genomes of the microorganisms that reside in an environmental niche or the microorganisms themselves, respectively.[3][4][5] However by the original definitions these terms are largely synonymous.

Saturday, October 18, 2014

Fermented Yuca(Cassava) pancakes(gluten free, dairy free, corn free, soy free, nut free)

No flour? No problem. No banana's? No problem. Fermented yuca pancakes are a new favorite. Sadly, Abby cannot partake of these because of the fermented part of the picture, but the rest of us LOVE yuca and were very glad we experimented with these. Abby nor I can have banana's and boy have I missed them. You know when a banana is right on the edge of being overripe? That extra sweetness and that touch of almost boozy flavor? That is fermented yuca. Just no banana flavor. This makes mashed fermented yuca excellent for all sorts of baked goods to increase tenderness, sweetness, and moisture.

The rice yeast balls can be found online or most International markets. There are both Chinese and varieties from the Philippines. I usually use the variety from the Philippines it is the "Rotary" brand. (This is what I buy locally Ragi Manis )

1 1/2 cup mashed fermented Yuca***
2 eggs
2 teaspoons melted coconut oil
1 teaspoon baking powder(homemade, 1 teaspoon baking soda, 1 teaspoon tapioca starch,2 teaspoons cream of tartar)
1 dash pink himalayan salt
1/2 teaspoon vanilla extract(homemade vanilla beans soaked for months in potato vodka)

(you can add a bit of sugar, but the fermented yuca is sweet by itself it just isn't needed)

Mash the fermented yuca smooth in the bowl(in the center of each root is there is often a "core" they will look like thick threads or strings, remove and toss those), blend in the rest of the ingredients until smooth.

On a medium low well greased skillet make your pancakes. Low and slow. Without flour these are delicate, so these will take an extra gentle hand to flip.

***Fermented Yuca

Peel and cook your yuca. Boil about 15-20 minutes till tender.

Cool to room temperature

Use "rice ball yeast". I smash the yeast ball(1 ball per about 4 medium roots)till it is powdered and rub all over the yuca. I covered it up snug and placed on top of the fridge(where it is warmer) for 3 days. You know it is done when it smells fruity,boozy and is mushy and sweet. Keeps well in the fridge for a couple weeks.

Friday, October 17, 2014

Cane Syrup Homemade (to replace corn syrup or Lyles)

Since we are worried about Lyle's right now(not sure what in it she is reacting to but I always blame corn!)I went ahead and made a batch of homemade cane syrup. With the holidays approaching having cane syrup to bake with is a must for us. Cane syrup or Lyles golden makes a great straight across substitution for corn syrup.(However, with candies there may need to be some adjustments made)

5 cups organic Domino's or C&H cane sugar(the organic is why the color is more amber then clear)
2 cups water
1 teaspoon cream of tartar(still using frontier)
1 dash of salt.

Place all ingredients in a deep pot. Do it gently though so that you don't splatter the sides of the pot. It will reduce the chance of crystals in your syrup.

On medium/medium high bring to a boil. Gently stirring, very gently so you don't get sugar everywhere.

Once it hits a boil no more stirring. Pop a candy thermometer in and let it cook until it hits 230-240.

Allow to cool completely. Store in jars in the pantry. Should keep for a couple months. Mine will have have a few crystals after a couple months but in general it holds up well.

NOTE: I recommend letting it hit room temperature because based on humidity, type of sugar or (poor measuring) the syrup can become too thick. If you reheat and add a few more tablespoons of water when it is too thick it can be saved. It will likely get more crystals from reheating, but the organic sugar is NOT cheap and worth saving.

Saturday, October 11, 2014

Bean Pie

Last Spring one of my nieces was doing a fundraiser and selling magazines. I opted to subscribe to Saveur Magazine, hoping to get some neat idea's to either help me with some new technique or new ingredient for Abby.

In their latest edition they had an article and recipe for Navy Bean Pie. I suspect a lot of folks would skip right over that recipe, but for me it was like winning the lotto! :-)

I had to make a number of substitutions and really not the same recipe any longer but it certainly inspired a new tasty creation. I did not have any navy beans in the fridge but I had some lima beans I had made in the pressure cooker the other day. (Lima beans are an excellent source of the trace mineral, molybdenum, an integral component of the enzyme sulfite oxidase, which is responsible for detoxifying sulfites plus tons of other great stuff but their level of molybdenum is unique among the legumes)

Preheat oven 350

1 gluten free pie crust recipe(mine is gf flour, palm shortening, 1 egg and just enough water to make a soft dough. I roll between sheets of parchment with a liberal amount of gf flour. I don't measure )

beaten egg(beaten egg to brush the crust cutouts so the sugar sticks)
Roll out crust and place in pie pan. Trim the edges pretty tight. Reroll all the scrap dough and cut out with small cookie cutter. I brushed them with beaten egg and sprinkled with sugar. I then brushed the edge of the pie crust with beaten egg(helps them stick!) and placed my cutouts overlapping. Place in fridge until ready to fill with filling.


1 cup cooked(soft)lima beans(365 brand)
1 cup evaporated coconut milk(simmer 2 cups of coconut milk(homemade or safe for you) until 50 percent reduced allow to cool to room temp before using)
1 cup sugar( C&H or Domino's Organic Sugar)
4 Tablespoons of palm shortening(or coconut oil both from Tropical Traditions)
1 1/2 Tablespoons of gluten free flour
1 Tablespoon vanilla extract(homemade in potato vodka for corn-free)
1 teaspoon allspice
1 teaspoon ginger
1/2 teaspoon cloves
4 eggs

Throw all the filling ingredients into the blender and puree until smooth. Pour into prepared pie crust.

Bake 50-60 minutes until center is just set(just like making a pumpkin pie). Check after around 30 minutes and carefully tent with tinfoil if the crust is browning too much.

Best eaten completely chilled.

Top with some coconut whipped cream (the hard cream off the top of chilled coconut milk, a bit of powered sugar(corn free), and a sprinkle of agar if wanted for an extra firm cream.

Wednesday, October 8, 2014

Medications NOT Safe for Mito

I have provided some links and I strongly recommend you review the lists and review what medications you or your child are taking.

One that repeats again and again is acetaminophen(Tylenol)- NOT good for Mito patients. (first list also mentions; aspirin and naproxen)

Another group of meds mentioned repeatedly were a variety of Antibiotics.

Of interest many Antidepressants, mood stabilizers, and anxiety medications were mentioned.

Most know that some seizure medications, some anesthetics(lidocaine included), Cholesterol medications, even cancer medications are more risky for Mitochondrial Disease patients.

So what is in your medication chest? Do you know which ones are especially dangerous to you or your child?

Currently testing for Mitochondrial safety is NOT required. There are many lists of medications out there that are not complete. On a positive the lists of medications responsible for mitochondrial dysfunction are growing by the day which having access to them will hopefully help Mitochondrial Disease patients protect their mitochondria when they chose to be informed.

Today, we seem to turn a blind eye to the fact that medications have side effects and sometimes the side effects outweigh the benefits. We are a "quick fix" society. Drs. learn about medications from the representatives of the companies that sell the medications more often then not, which isn't exactly reassuring. The vast majority of Drs. are not familiar with Mito(many don't "believe" it is real) let alone which medications are dangerous to the population.

As a patient you need to do your own research. Minimize your risks in partnership with your Drs, don't depend on them to know the risks.

Another day I will post the scary long list of chemicals/environmental pollution(in your food!!!!) that are dangerous to our Mitochondria,a truly scary long list.

Medication-Induced Mitochondrial Damage and Disease.neustadt-Pieczenik

Drug Induced Mitochondrial Dysfunction(book)

Via MitoAction- Drugs with KNOWN Mitochondrial Toxicity

Monday, October 6, 2014

Chickpea Pie Bars: gluten free, dairy free, soy free, nut free, corn free. (maybe corn-lite)

Thanksgiving is coming and we are all dreaming of Pecan I mean Chickpea Pie. Since we started using roasted chickpeas instead of nuts in various recipes we all have really liked them. At first we really missed nuts especially pecans. Today when I sampled these I felt like I was eating a dessert from my childhood, apparently even my tastebuds have decided chickpea's are superior.

CORN_LITE POTENTIAL: Lyle's Golden Cane Syrup. Not sure if it is corn contaminated or not, but I have to admit that Abby got a bit of heartburn quickly after eating 1 of these. A couple months ago a similar reaction. Granted, Abby hasn't been doing so great with food for the last few months so might just be her sensitive gut. Or, she reacts to so much that it is possible it was contaminated with 1 of the hundreds of other things that upset her body, but we are certainly going to be careful about the next time we use the Lyle's, just in case it is the issue.

This recipe is heavy on the filling and light on the crust- as it should be. Do make sure to bake it long enough that before you remove from the oven the center no longer wobbles. I throw the pan in the fridge to hurry up cooling it off! Do wait until at least room temperature or chilled through before trying to cut.


1 cup all-purpose gluten free flour
1/4 cup granulated sugar(Domino's or C&H organic cane sugar)
1/2 teaspoon salt(pink himalayan or what is safe for you)
1/3 cup Palm Shortening(Tropical Traditions)

3 eggs
1 cup lyle's golden cane syrup
1/2 cup granulated sugar
1/2 cup brown sugar(make your own with Plantation blackstrap molasses and organic cane sugar)
2 Tablespoons palm shortening, melted
1 teaspoon vanilla extract(homemade with potato vodka)
1 cup roasted chickpea's (homemade, search my blog for the best recipe)

1.Preheat oven to 350 degrees(reduce to 325 if you are using clear glass for a pan). Line a 9X9 or 8x8 with parchment paper and grease the parchment too.

2.In a large bowl, mix together the flour, sugar, and salt. Cut in 1/3 cup palm shortening until it looks like coarse crumbs. Sprinkle the mixture evenly over the prepared pan, and press in firmly.

3.Bake for 20 minutes in the preheated oven.

4.While the crust is baking, mix the filling. In a large bowl mix together the eggs, Lyle's golden syrup, sugar, brown sugar, 2 tablespoons melted palm shortening, and vanilla until smooth. Pour the filling evenly over the hot crust as soon as it comes out of the oven. Sprinkle your chickpea's evenly across the top of the filling.

5.Bake for 30-35 minutes in the oven, or until set(no wobble in the center. If you need check in the last 10 minutes and cover with tinfoil if it is looking too brown ).

6.Allow to cool completely on a wire rack before slicing into bars.

Saturday, October 4, 2014

Another Abusive Hospital? We thought Justina was an Isolated Incident

Health Impact News posted this story this week.

Very disturbing.

I hope everyone has vetted their Specialists and Hospitals. If it happens once, twice, a dozen.. couple hundred, or thousand times potentially?

Not even our Medical System is free of corruption apparently when it comes to making a buck. Almighty dollar before the patient.

Take precautions folks.

Health Impact News: 10 and 12 Year Old Sisters Seized from Family by Hospital in Phoenix

Does the hospital you use or your Specialists are employed by receiving grant money or research dollars from the Government or Pharmaceutical companies? Probably a very good thing to know.

(I have cut and copied and saved the article in case the Courts order the news source to remove it. )

Thursday, October 2, 2014

Who Wants to be a Flu Shot Guinea Pig??? Playing with Fire.

The UMDF sent this email out:

Flu Vaccines

The flu vaccine is available at the NIH Clinical Center in Bethesda, Marylandd via the NIH MINI Study. The NIH is trying to immunize as many mitochondrial patients as they can this Fall.

The NIH will provide travel, lodging and meals for those who qualify. For those pressed for time, vaccinations and studies can be done in one day.

For more information, a PDF guide for families regarding the flu season, the flu vaccine and their study contact information is linked here: http://bit.ly/1qSdO9z or visit the NIH at: http://www.genome.gov/MINI

UMDF Mission
To promote research and education for the diagnosis, treatment, and cure for mitochondrial disorders and to provide support to affected individuals and families.

My jaw must have hit the floor when I read this because in my opinion, if there was ever a population of patients at much higher risk for side effects it is Mito Patients.

A few reasons why we will NEVER allow that nasty stuff near Abby:


he Lancet
published a study showing that the flu shot was only 1.2% effective.

A study conducted by The Lancet in 2010 brought out some startling revelations about the effectiveness of flu shots. The study involved a control group of 13,095 adults who were not vaccinated. The group was monitored to see if participants had been infected by the influenza virus, but 97% remained unaffected. Only 2.7% or 357 people in the non-vaccinated group ended up contracting the virus. Of the group of adults who were vaccinated with a trivalent inactivated influenza shot, only 1.2% did not catch the flu. The difference between the two outcomes is that the flu vaccine only prevents the flu in 1.5 out of every 100 adults injected with the flu shot not 60% as you’ve been told.

2) More Seizures
! Would take a med that the side effect was more seizures? Probably not.


On a separate note, during the 2010–2011 influenza season, CDC and the Food and Drug Administration (FDA) conducted enhanced monitoring for febrile seizures after influenza vaccination because of reports of an increased risk for fever and febrile seizures in young children in Australia associated with a 2010 Southern Hemisphere vaccine produced by CSL Biotherapies (up to nine febrile seizures per 1,000 doses). Because of the findings in Australia, the U.S. ACIP does not recommend the U.S.-licensed CSL Biotherapies' trivalent inactivated vaccine (Afluria) for children younger than 9 years.

3)Mito Toxic Ingredients: Again, would you take one of the meds that has the potential to cause Mito Dysfunction? Even if it actually did work? Probably not.

Type of Ingredient: (via the CDC )
Preservatives Thimerosal(IS Mercury which is deemed very dangerous by our Government) (only in multi-dose vials of flu vaccine)* To prevent contamination
Adjuvants Aluminum salts To help stimulate the body’s response to the antigens
Stabilizers Sugars, gelatin To keep the vaccine potent during transportation and storage
Residual cell culture materials Egg protein To grow enough of the virus or bacteria to make the vaccine
Residual inactivating ingredients Formaldehyde To kill viruses or inactivate toxins during the manufacturing process
Residual antibiotics Neomycin, sulfa drugs To prevent contamination by bacteria during the vaccine manufacturing process

A more complete list of ingredients via Wikipedia

Vaccine Culture media Excipients
Adenovirus vaccine Dulbecco's Modified Eagle Medium, human diploid fibroblast cell culture (WI-38) Acetone, alcohol, anhydrous lactose, castor oil, cellulose acetate phthalate, dextrose, D-fructose, D-mannose, FD&C Yellow #6 aluminum lake dye, fetal bovine serum, human serum albumin, magnesium stearate, micro crystalline cellulose, plasdone C, polacrilin potassium, potassium phosphate, sodium bicarbonate, sucrose
Anthrax vaccine (BioThrax) Puziss-Wright medium 1095, synthetic or semisynthetic Aluminum hydroxide, amino acids, benzethonium chloride, formaldehyde, inorganic salts and sugars, vitamins
BCG (Bacillus Calmette-Guérin) (Tice) Synthetic or semisynthetic Asparagine, citric acid, lactose, glycerin, iron ammonium citrate, magnesium sulfate, potassium phosphate
Influenza vaccine (Afluria) Chicken embryo Beta-propiolactone, calcium chloride, dibasic sodium phosphate, egg protein, monobasic potassium phosphate, monobasic sodium phosphate, neomycin sulfate, polymyxin B, potassium chloride, sodium taurodeoxychoalate, thimerosal (multi-dose vials only)
Influenza vaccine (Fluarix) Chicken embryo Formaldehyde, gentamicin sulfate, hydrocortisone, octoxynol-10, á-tocopheryl hydrogen succinate, polysorbate 80, sodium deoxycholate, ovalbumin
Influenza vaccine (Flulaval) Chicken embryo Formaldehyde, á-tocopheryl hydrogen succinate, polysorbate 80, sodium deoxycholate, thimerosal, ovalbumin
Influenza vaccine (Fluvirin) Chicken embryo Beta-propiolactone, egg protein, neomycin, nonylphenol ethoxylate, polymyxin, thimerosal (multi-dose containers), thimerosal[2] (single-dose syringes)
Influenza vaccine (Fluzone) Chicken embryo Egg protein, formaldehyde, gelatin (standard formulation only), octylphenol ethoxylate (Triton X-100),sodium phosphate, thimerosal (multi-dose containers only)
Influenza vaccine (FluMist) Chicken kidney cells, chicken embryo Arginine, dibasic potassium phosphate, egg protein, ethylene diamine tetraacetic acid, gentamicin sulfate, hydrolyzed porcine gelatin, monobasic potassium phosphate monosodium glutamate, sucrose
Pneumococcal vaccine (Pneumovax) Bovine protein Phenol
Pneumococcal vaccine (Prevnar) Soy peptone broth Aluminum phosphate, ammonium sulfate, casamino acid, polysorbate 80, succinate buffer, yeast
Rotavirus vaccine (Rotarix) Dulbecco's Modified Eagle Medium (DMEM) Amino acids, calcium carbonate, dextran, sorbitol, sucrose, vitamins, xanthan

List of Side Effects :
One 2007 study published in the Annals of Medicine4 concluded that:

"Abnormalities in arterial function and LDL oxidation may persist for at least two weeks after a slight inflammatory reaction induced by influenza vaccination. These could explain in part the earlier reported increase in cardiovascular risk during the first weeks after an acute inflammatory disorder."

WellnessAchiever.net (tons of great information and links)

Are there side effects? (via flu.gov)

Mild side effects usually begin soon after you get the vaccine and last one to two days. Possible mild side effects of the flu shot include:

Soreness, redness, and swelling at the injection site
Fainting, mainly in adolescents
Possible mild side effects of the nasal spray include:

Runny nose
Muscle aches
Serious side effects usually begin within a few minutes to a few hours after receiving the shot. Possible serious side effects of vaccination include:

Difficulty breathing
Swelling around the eyes or lips
Racing heart
Behavior changes
High fever
If you experience any of these reactions, seek medical attention immediately.

(meaning don't use if you have ANY of these health issues) via the CDC website:

LAIV should not be administered to people who have had a severe allergic reaction to the following:

Severe allergy to eggs.
Severe allergy to another component of the LAIV vaccine. The package insert should be consulted for components.9
Severe allergy to a prior dose of an influenza vaccine (IIV or LAIV).

LAIV should also not be administered to people who are in the following groups because the effectiveness or safety of LAIV is not known:

Children aged <2 years or adults aged ≥50 years Pregnant women People with known or suspected immunodeficiency diseases or immunosuppressed states (including those caused by HIV) Children or adolescents receiving aspirin or other salicylates (because of the association of Reye syndrome with wild-type influenza virus infection) People who have other medical conditions that place them at increased risk for complications from influenza, including: Asthma or reactive airways disease Other chronic disorders of the pulmonary or cardiovascular system (except hypertension) Neurological/neuromuscular diseases Metabolic disease, such as diabetes mellitus Renal or hepatic dysfunction Hemoglobinapathies

The following are precautions for use of LAIV

Guillain-Barré Syndrome (GBS) within 6 weeks of a previous dose of an influenza vaccine (IIV or LAIV)1
Presence of a moderate or severe acute illness with or without a fever.5 Persons who were hospitalized with an acute illness but who are now well enough to be discharged from a hospital can be vaccinated.

Lastly and again, Flu Shots just don't work:

A study published in the October 2008 issue of the Archives of Pediatric & Adolescent Medicine found that vaccinating young children against the flu had no impact on flu-related hospitalizations or doctor visits during two recent flu seasons. The researchers concluded that "significant influenza vaccine effectiveness could not be demonstrated for any season, age, or setting" examined.

A large-scale, systematic review of 51 studies, published in the Cochrane Database of Systematic Reviews in 2006, found no evidence that the flu vaccine is any more effective than a placebo in children under 2. The studies involved 260,000 children, age 6 to 23 months.

So, glad I did not donate to the UMDF this year. I cringe to think of my donated dollars being used to send out this email.

Even if Abby were healthy, it would be insane or worse to give her medications that have little to no benefit and lots of potential danger. Pretty much like sending a 4 year old to climb Mt. Everest by themselves. Odds are they will fail, and odds are high they are going to get hurt and even if they succeeded? Benefits next to ZERO.

In my opinion odds are the flu shot would be more likely to trigger Mito then prevent it.

Saturday, September 27, 2014

Better in September

This month still hasn't been easy, but definitely seeing some signs that we are on the up and up finally.

Food is still a struggle. Very limited diet, and very limited absorption.. she is pretty much holding her weight minus a few but I am much more worried about the nutrition or lack of she is eating or her body absorbing. Seeing a few signs of rebound makes me much relieved.

The climb back up the hill is slow, so slow it is almost as frustrating as the very fast trip down the hill.

I think it is the waiting, the waiting each morning to see if I can see any even tiny bit of improvement in her face. The inability to do a thing to change the course. The improvements are so slow and so tiny it can take a week to confirm that she actually has bounced back a bit.

We have skipped a few months of dental care, and that seem's to have given her the extra wiggle room to get back on track.

Derek and I both caught the virus going around- goodness! Took me two weeks. I am totally blaming those dangerous live virus flu sprays they give to children. Walgreens and the Pediatric offices have been spraying that virus up little noses like mad, which means all the little ones are running around shedding(spreading) live virus everywhere they go for weeks. Sigh, flu shots and sprays should be banned- nasty and ineffective at prevention, though spreading they are doing a fine job. Based on the fever, green snot and major ear and head pain I suspect I had an ear infection/sinus infection. I managed without antibiotics. Though I admit there were a number of days I was sick enough and miserable enough I really thought about going in and shortening my misery, but knowing that Abby cannot have antibiotics and knowing that any time we do use antibiotics we are risking a big trade off on overall health and scary side effects(killing your Mitochondria is high on the list of danger) I am proud of myself that I "sucked it up'. I at least had motrin to get me through the worst of it where Abby gets zip,zero nothing to help her. I am so incredibly grateful that Abby did not catch this one! I have no idea how badly it would have wrecked her. She seems to catch so many colds but they always come and go quickly. For the most part she just doesn't catch these big bad ones. Of course I probably just cursed ourselves by writing that!

If the ragweed would just go away I am confident we would get Abby zipping back along a little more quickly. The temperatures sure have been more conductive to better health for her so soon enough the ragweed will be gone.

I am a bit worried with all the bladder bleeding that seems to not want to go away with her. It seems to flare when she is in a major flare(last couple months) so hopefully it will settle down and heal up now that she is feeling a touch better.

The weird hickey rashes that happen when anything touches her seem to be determined to continue. She will go a week or so and hardly get any and then boom! Suddenly she is covered with them. They are clearly caused by her clothes, pillows, etc where it is pressed against her sleeping or even sitting. They seem to heal up quick enough. She has bloodwork again next month so if it is anything concerning I would think that would catch it.

Toenails are nearly "normal" though we are kind of holding our breath, based on how upset her bladder is she might have had enough stress that we might see another stop and go on those toenails. Hope not.

Her feet look pretty normal. Too much walking or too little and they cramp up but I think she has found a good balance. The calluses are still in crazy spots but seemed to have slowed.

With Abby it seems her body is in a constant stage of transformation. So many odd little issues that come and then go, making room for another crop of oddball symptoms to crop up. I am never sure what to expect next, but holding my breath seems to be working because despite the slew of oddball things, nothing yet that we cannot handle at home.

Speaking of transformations, Derek's hair has undergone a transformation. It started with shedding, and we guessed midlife was finally striking and we have both been preparing for the "bald spot".. :-) I have always loved his great thick hair. To our great surprise, his hair was falling out to make room not for gray hair, but for "curly" hair. I mean truly curly hair. His hair has always been very straight so this has been quite the novelty. Why we are surprised is beyond me,after all we have Abby who's body has yet to quit surprising us.

I usually mourn the end of summer, but with Abby struggling most of it this year I cannot wait to see it go. Winter has promise this year and we are going to appreciate it immensely if winter means the improvement of Abby's health.

Hopefully this week we can add a food(something green!) back into Abby's diet. Fingers crossed!

Thursday, September 25, 2014

Maple Cakes(gluten free, soy free, corn free, dairy free, nut free)

Thankfully, Abby does well with Maple. Sadly, the good and clean stuff is just expensive! For a treat and because her list of safe ingredients is rather short right now Maple cupcakes were just perfect to brighten things up. These are moist, yet not too dense. Using coconut oil works really well in this particular recipe plus using coconut oil instead of other fats is a better nutritional choice. You could reduce the granulated sugar and maybe even just leave it out, the maple syrup makes these quite sweet. I think without the sugar then skip the frosting and maybe add some dried fruit these might make a great breakfast muffin. Just as they are though works well for a dessert.

We have been using C&H organic in everything at this point and it is working very well for Abby and no noted difference in the food. We have been trying to use psyllium husk powder rather then guar. Abby hasn't ever noticed an issue with guar gum but because so many seem to either distrust the gum's or have issues digesting I have continued to try other things. Psyllium Husk can be still difficult for some to digest but is seen as a "cleaner" food source. On a positive, it really does work as well as guar gum. I find with desserts usually a straight across substitution, but with breads I have been doubling when substituting psyllium for guar with success.

3/4 cup coconut oil, room temperature(Tropical Traditions)
2½ cups all purpose gluten free Flour
2 teaspoons baking powder(homemade)
1/2 teaspoon baking soda
1 teaspoon psyllium husk powder
1/2 teaspoon pink himalayan salt
3/4 cup pure maple syrup
1/2 cup granulated sugar(C&H organic sugar)
2 large eggs
1 teaspoon homemade vanilla extract
3/4 cup homemade plain coconut yogurt

Frosting Ingredients:

⅓ cup pure grade B maple syrup, plus more if needed
3 Tablespoons palm shortening(Tropical Traditions)
2 cups corn-free confectioners' sugar
1/4 teaspoon salt(if you like salted caramel add more salt, salted maple is delightful too!)

Preheat oven to 350

In a medium bowl, whisk together flour, baking powder, baking soda, and salt.
In second bowl, Beat coconut oil, maple syrup, and sugar with a mixer until fluffy. Add eggs and vanilla extract, mix well.

Add flour mix and coconut yogurt to coconut oil mix. Blend just until combined.

Fill cupcake papers 2/3 full.
Bake until a cake tester comes out clean about 16-18 minutes. Cool completely before frosting.

Combine maple syrup and shortening in a bowl.
Sift in confectioners' sugar and mix/blend until combined.
Adjust consistency with more syrup, if needed.

Tuesday, September 23, 2014



September 22, 2014
Carol Chittenden, Empire State Consumer Project cachitter@aol.com 585-831-7124


Rochester, NY – Due to serious safety concerns raised in an FDA Citizen Petition filed by consumer group, Empire State Consumer Project (ESCP), last week, the US Food and Drug Administration (FDA) agreed to study the effects of polyethylene glycol 3350 (PEG 3350) laxative use in children. The group submitted the petition in 2012 on behalf of parents who say their children have been harmed by polyethylene glycol 3350 drug products. There is special concern about the safety of PEG 3350 laxatives like Miralax, which are not approved for use in children, and are not approved for more than seven days use. Many children are prescribed multiple daily adult doses by doctors off-label, often for months or years at a time. The ESCP petition calls for an investigation into the effects of PEG 3350 on children and a boxed warning on PEG 3350 products. The boxed warning was not granted, but the FDA has decided to update the labeling of prescription PEG 3350 bowel preparations with more stringent warnings and precautions for patients with certain health conditions.

The safety concerns reported in the FDA Citizen Petition are symptoms similar to those of ethylene glycol toxicity. The petition grant includes an agreement by FDA to study the potential for PEG 3350 to degrade into ethylene glycol (EG) and diethylene glycol (DEG), and to study the long term effects of PEG 3350 products on pediatric patients. Ethylene glycol and diethylene glycol are chemicals used to make antifreeze. Both are toxic to the central nervous system, liver, and kidneys when ingested. In recent history, DEG contaminated cough and acetaminophen syrups killed hundreds of adults and children. In 2007, the FDA issued a warning for consumers not to buy toothpaste from China, as some brands were made with DEG.

The FDA Adverse Event Reporting System (FAERS) shows over 7,000 adult and child adverse event reports that include at least one PEG 3350 product, including a number of deaths.
The number of reports rose from 2,257 in 2012, when the FDA Citizen petition was filed. In 2009, the FDA Drug Safety Oversight Board acknowledged neuropsychiatric, metabolic, gastrointestinal, and kidney events in children who took PEG 3350 laxatives, but felt that “no action was required” at that time:

“The Drug Safety Oversight Board discussed reports of metabolic acidosis, metabolic acidosis with increased anion gap, and neuropsychiatric adverse events in children using polyethylene glycol (PEG) products. Metabolic acidosis is a disturbance in the body's acid-base balance and causes too much acid in the blood. In some situations, metabolic acidosis can be a mild, chronic condition; however, it may lead to shock or death in severe cases. Neuropsychiatric adverse events may include seizures, tremors, tics, headache, anxiety, lethargy, sedation, aggression, rages, obsessive-compulsive behaviors including repetitive chewing and sucking, paranoia and mood swings.” “It is unknown if prolonged duration in solution would change the chemical properties of PEG-3350, and what the actual content of ethylene glycol or diethylene glycol or other low molecular weight PEG would be under such conditions.”

In addition to the ethylene glycol and diethylene glycol children may be exposed to through the degradation of PEG 3350, the FDA has tested 8 lots of polyethylene glycol 3350 and found ethylene glycol and diethylene glycol contaminants in the product itself:

“To better understand the level of polyethylene glycol impurities in PEG, the FDA Chemistry and Manufacturing group evaluated PEG 3350. This analysis of eight lots of PEG 3350 confirmed the presence of small amounts of ethylene glycol and diethylene glycol in all lots tested. Based upon the recommended daily adult dose of 17 mg daily dose PEG 3350, the maximum daily exposure of ethylene glycol would be 0.005 mg/kg/day for a 60 kg patient, or 0.015 mg/kg/day for a 20 kg pediatric patient (approx 5 years of age). Other low molecular weight PEGs were not included in this analysis. However, it is not known if any of these LMW species are absorbed and if so to what extent. Understanding the human absorption profile of LMW species is the first step needed in trying to understand the possible contribution of PEG 3350 use to the development of adverse events in children using this product chronically.”

Empire State Consumer Project has since petitioned the FDA to issue a Drug Safety Communication regarding the finding of ethylene glycol and diethylene glycol in all lots of PEG 3350 it tested, so that parents of study participants and all parents can be made aware of the potential for PEG 3350 to contain ethylene glycol and diethylene glycol. This petition for a Drug Safety Communication was denied. The EPA recommends that children not be exposed to more than 20 mg/L or 20 parts per million (ppm) of ethylene glycol in drinking water per one day or 6 mg/L or 6 ppm per day over 10 days. The adult doses of PEG 3350 tested were found to contain 0.3 mg of ethylene glycol of daily exposure for a 44 lb. child. This exposure is in addition to any EG and DEG exposure that may be found to occur from PEG 3350 degradation of the laxative products. The health effects of long term exposure of children to PEG 3350 are not known, although risks from short term exposure to EG and DEG are well documented in humans.

Empire State Consumer Project is a 501c3 registered Not-for-Profit Organization dedicated to reducing the use of chemicals toxic to human and environmental health. We accomplish this by educating consumers and industry, conducting product testing and reporting, and by advocating for regulation where needed to protect the public interest.


Empire State Consumer Project FDA Citizen Petition and FDA Response

NIH Grant to Study PEG 3350 in Pediatric Patients and Test of 8 Lots

Empire State Consumer Project, Inc.

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