One Mom’s Experience: Vaccine Titers

This story was shared with me, recently,  by a mother who chooses to remain anonymous, about her experience with obtaining titers for her child. In her own words…

I have always wanted to be a mother, for as long as I can remember, having children has always been a non-negotiable part of who I am. My husband and I were fortunate to have a healthy baby boy (all 10 pounds of him!) in 2005. An equally large “little sister” made our family complete in 2008. My husband and I took precautions to keep our children healthy, including vaccinating them on schedule. Our son had all of his vaccinations through age 8 and our daughter had all of them up to age 5. We did yearly flu vaccinations to keep them from getting illnesses that could otherwise be prevented. That changed in 2013, after my daughter had what I believe was an adverse reaction to the Flu Mist vaccine. Read on.

We were surprised when our son began showing signs of motor tics around age 5. Not to worry, said the neurologist, “The best thing is to do is… nothing at all because most tics go away in a year, and you shouldn’t worry about these little things” he continued. It never occurred to us that these tics could be related to vaccination.

But they didn’t wane; in fact they increased. More worrisome was that the motor tics were soon joined by vocal tics. Diagnosis: Tourette Syndrome.

When our daughter started excessive eye blinking, we trotted off to the ophthalmologist and were told that eye blinking was a common occurrence. Furthermore, drawing any parallel between our son’s Tourette’s and her blinking was irrational. Again, no one, including my husband and me, considered that they might be related to a vaccine.

As health-conscious, compliant parents we kept on track with our children’s vaccine schedules, never questioning vaccine safety,efficacy or possible side effects.

In the fall of 2013 we returned to the Pediatrician’s office for well-child visits, and this time chose the Flu Mist vaccine, to avoid a needle stick. We left the office feeling like we had done everything we were supposed to do keep our children in the best possible health. I even got the Flu Mist myself while I was there- I loved how concerned and efficient our pediatricians office was to take care of me in the same visit.

Several hours after we returned home my children were playing in the living room, when I heard my daughter scream, “Mommy! Mommy! I can’t control my leg- make my leg stop!” She was thrashing on the floor, her leg appearing as if an invisible force was causing it to jerk violently in and out. Her foot came up towards her buttock and then shot straight out. This jerking and kicking continued for minutes, and when I could do nothing to stop it, my daughter became increasingly upset. Her leg continued as she were trying to kick something as hard as possible. She was crying and screaming and neither she nor I had any idea what was happening to her body.

I called the pediatrician’s office to see what they had to say- I wondered if it could be a reaction to the Flu Mist. The curt response was, “She has a tic disorder, what do you expect?” I replied, “No, she blinks excessively- that is all that there is to her to her tic disorder.” Why wasn’t the doctor more concerned?

I later learned that tics can be an adverse reaction to a vaccine. I also learned that an adverse reaction can be immediate or delayed, making it difficult to draw any conclusions about cause and effect relationships. Most importantly, I learned that the U.S. government provides a way to report an adverse vaccine reaction through the pediatrician. I asked my doctor to file an adverse reaction report, but was told by the nurse that my pediatrician would not support that action.

My daughter’s leg jerking was my wake up call. It really grabbed my attention. I never wanted to experience anything like it again, nor my daughter.

My journey to help my children be as healthy as possible led my family to a specialist, who, after extensive laboratory testing, found underlying auto immune conditions in both of my children. My son’s immune levels and markers are significantly worse than my daughter’s immune levels, just as his motor and vocal tics are worse than her occasional bouts of excessive eye blinking. My research told me that vaccines are counter-indicated for individuals whose immune systems are compromised, as my children are. Thus, I made the decision to decline the flu vaccine for all of us in 2014. We had a few colds, but not the flu.

Our daughter, age 6, was due for some vaccine boosters. According to the American Academy of Pediatrics (AAP) vaccination schedule, she should receive another dose of DTap, MMR, varicella and polio by May of this year, in order to remain in public school in the Commonwealth of Pennsylvania where we live. I noticed that the extensive blood testing done contained titers on several of these diseases, and that hers were above the levels necessary to show immunity.

In March, we returned to our pediatrician to discuss vaccinations. I was very concerned about continued vaccination with my daughter’s previous vaccine reaction to the Flu Mist, and her underlying autoimmune conditions. Even though I had acceptable titers from the measles, mumps and rubella that were less than a year old, the doctor insisted that he needed to draw current titers. Why?

My doctor’s initial response to my concern about titer testing was, “Insurance won’t cover these tests.” Hmm… I quietly wondered to myself, our insurance DID cover the earlier testing, the results from which I gripped in my sweaty palms. I didn’t confront, I was passive, responding “I don’t mind paying if that is the case.” His next response surprised me, “I don’t think there is a lab in this city (1 million metropolitan area) that can do these tests. I’m not even sure where to send you for this blood work.”

He then excused himself,and I heard him consulting with another pediatrician in the practice. When he returned, he asked me to contact the developmental pediatrician to ask where they send their patients for blood titers. I left the office with no prescription.

I called to confirm that our local children’s hospital could do all the blood titers required, and called back to report to my pediatrician. “Ok, I’ll write the script and you can pick it up on Monday.” This sounded like a good plan. But after so many phone calls on a Friday afternoon I was concerned that my pediatrician was not very well versed about vaccination after an adverse event or in the case of children who are immune compromised.

Monday I picked up the prescription for blood titers for the required vaccinations from the doctor’s office. It was folded, and in a sealed envelope- I didn’t even open it until I was home. Then that feeling of my blood pressure rising caught me as I read the bold words scrawled across the bottom of the prescription Mother does not want to vaccinate child

 How could he write this? It was a lie! I asked him to draw blood and check the levels of existing immunity in my daughter to be able to see if she even NEEDED further vaccinations. I had NOT refused vaccination!

I calmed down and I googled “Parent refusal to vaccinate.” I was astounded to learn something that I couldn’t believe was real: there are medical processing codes for refusal to vaccinate!

Here are a few of them:

The ICD-9-CM Volume 2 Index entries contain back-references to:

V64.00 Vaccination not carried out because of

V64.01 Acute illness

V64.02 Chronic illness

V64.03 Immune compromised state

V64.04 Guardian refusal

V64.05 Parent refusal

V64.06 Patient refusal

V64.07 Religious reasons

V64.08 Patient had disease being vaccinated against

V64.09 Immunization not carried out because of other contraindication

My husband and I headed back to the pediatrician to find out why he chose these words  and wrote them on the order for blood work. Does this say to the insurance company, “Don’t cover this test?” Is it a code that is sent to the CDC to track my child? Why didn’t he give me a code for “immune compromised state?”

Our long story short, the pediatrician agreed to change the code on the prescription for the titers. We had them drawn at our local children’s hospital and returned a few weeks later to our pediatricians office to find out that our daughter DID NOT NEED another dose of either the DTap, MMR, varicella or polio vaccine because her body had mounted an adequate immune response, that was still present. No need for a booster and no need for unnecessarily putting her at risk for another vaccine reaction.

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Mommy Book Report: Saving Sammy, Curing the Boy who caught OCD #PANDAS


This week I picked up this book while hanging out in Pittsburgh waiting for my son at camp. It was a quick read and one that I could not put down- perhaps because the physical and medical underpinnings of psychiatric illness are a topic near and dear to my heart, but partly because Beth Maloney tells the story as only a mom can, of saving her son from the horror of what she witnessed before her eyes. Beth, like so many other mothers I know, experienced seeing her typically developing pre-teen son “disappear” and become lost in the world of what the psychiatrists that she was seeing for him labeled as obsessive compulsive disorder (OCD) and tourettes.  It was only through her searching and her tenacity to find out what happened to her son, that she was able to lead him to health (with a hand picked team of  enlightened professionals). Without giving away too much of the story, I think it is important to mention that the cause of her son’s “mental illness” was an infection that millions suffer from yearly- STREP. The condition her son was suffering from is called Pediatric Autoimmune Neuropsychiatric Disorders Associated (with) Streptococcus (PANDAS).  I highly encourage all moms out there to read this book, to allow it to broaden you mind of what may actually be going on with children who suffer from “mental illness”- from OCD to Tics, from Bi-polar to Autism… and ask yourself if medicine is doing all it can to properly diagnose and treat our next generation. In the past 3 years, I have unfortunatley gotten a crash course in PANDAS because a number of close friends have had children “catch” this illness that is unrelenting.  Recently I have heard many in the Autism community struggling with PANDAS in addition to their child’s autism.

I will end with some links to resources for PANDAS and more about Sammy’s story, which is truly remarkable. If you don’t have time to read the book, please take the time to watch these 2 videos about Sammy and PANDAS:

Beth’s second book on PANDAS

Saving Sammy FaceBook page

A resource for PANDAS testing.

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Childhood Behavior- Are they what they eat?

July 2015 Article in Pittsburgh Parent Magazine

Childhood Behavior- Are they what they Eat?

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Click on photo to enlarge and read article.

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To all the Mothers of special needs kids… on Mother’s Day 2015

Last night I read this awesome post:Why My Kids Chronic Illness Makes Me Grateful To Moms I Have Never Met

And I relized just how much my perspective on life including friendships have changed in the last 10 years…

I once browsed maternity stores with friends who were expecting around the same time as I was with my first child,  “as long as the baby is healthy” we would say…

that was long before I had any concept of  what newborn screening or mitochondrial disease was.

I once spent hours researching car seats, and cribs, high chairs and strollers

that was long before I had any concept that I should have spent a fraction of that time researching the vaccines my newborn baby would get on the first days, and months of life.

I once attended breastfeeding classes, infant CPR classes and prenatal classes with my husband, as we anxiously awaited the day we would become parents

that was long before I knew that the classes I would end up using the most information from were my college chemistry, and graduate school biochemistry courses in the wee morning hours looking for answers for my child on PubMed.

I once spent days maybe even weeks oogling and googling at my newborn son, as I basked in the glow of being a new mom

that was long before I became a mom to a baby who I couldn’t oogle and google with because she was in so much pain and discomfort in those early months that all she could do was scream.

I once joined play groups and moms clubs and spent my first child’s toddler years at zoo’s and museums and outings each and every week

that was long before I spent those same toddler years into and out of doctor and specialist appointments, trying to find out what was ailing our little one

I once fretted over which preschool my son would attend, touring half a dozen of them, camping out in line for the chance at a spot, waiting with baited breath to see if he got in

that was long before I had days and nights where I prayed that my child would be able to attend preschool, that she would be well enough to be in that environment

I once held back tears as my first born went off t0 that  preschool, and met with other teary eyed mommas for coffee to comfort each other’s anxiety over this big milestone

that was long before I would sit and comfort moms online, over the phone, or in person as their child went into surgery, when their child’s genetic test results came back , or when their child (like mine) didn’t meet the milestone that they were supposed to meet months ago.

I once was concerned with a few percentile changes on the growth chart with each well visit for my son

that was well before I would have a child who was labled “failure to thrive”

I once thought children’s medicines were safe and effective for all children

that was long before I had to learn about the dangers of acetaminophen for my second child.

I once thought chatting online to perfect strangers was reason for concern

that was long before I connected with mothers from all over the world, with children much like my own, who are on a mission to not only help one another but to change the world for the better, for every child to come…

Thank you to all the friends who have weathered the storms called life with our family over the years, thank you to all the virtual friends I have met whom I hope one day to meet, thank you to all the moms out there, whether your child has special needs or not, who work each and every day to leave this world in a better place. And to all the mothers of special needs kids out there, thank you for sharing your stories, telling your truth, loving and advocating for your child, and trusting your instincts.


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Thank you Elks!

This weekend, Lady A and I had the distinguished honor of attending the Pennsylvania Elks Convention in Gettysburg, PA.

Lady A was honored as this year’s “CHILD OF THE YEAR” for the Elk’s Home Services Program.  Unless you are a member of your local Elk’s Lodge or have had the opportunity to have an Elk’s Nurse from the Home Service Program visit you, you may not know what I am referring to. I am convinced this program may be one of the best kept secrets in all of Pennsylvania, especially for families with special needs kiddos!

When we moved here a few year’s ago, a few moms on a message board encouraged me to get an ELKS NURSE. I had no idea what they were talking about, but I called the number. A few weeks later an Elk’s nurse showed up for an appointment with us at our new home. Elk’s nurses do not provide direct medical care but instead are there to help a family NAVIGATE almost every aspect of life with a special needs child.  The Elk’s nurse, Ginger (now retired), helped connect our family with resources in our community, other parents, support groups and even nearby medical care. After she retired and Margaret became our new ELKS nurse, we were preparing for Lady A to enter kindergarten. Margaret was an invaluable resource as we navigated the ins and outs of 504 plans and the like. She even offered to attend any school meetings regarding these plans that I needed her to! What a huge benefit to have an advocate working WITH you for the wellbeing of your child! This service is offered to families for FREE with the generous support of Elks lodges all across the state, along with state grants. If you are intersted in learning more or requesting the services of an ELKS nurse in your area please call 1-800-986-4550 or visit this website for additional contact info-

We had an amazing weekend getting to meet all the wonderful people who support this organization as well as the entire nursing staff and leadership who offer support to families like ours.  Lady A and I want to extend a GREAT BIG

THANK YOU to the ELK’s of Pennsylvania!

Thank you for honoring Lady A and letting us take part in your conference. Thank you for showering her with attention, pins and sweet gifts! Thank you for the money you raised to continue this program. And ABOVE ALL, thank you for what you do each and every day to help families with special needs children so that their journey may be a bit easier to travel with an ELK’s Nurse Advocate by their side.

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Microbiome and Autism Awareness


Today is the first day of AUTISM AWARENESS month. With epidemic numbers of children being diagnosed with Autism, I am fairly confident that many are AWARE that Autism exists. What you may not be AWARE of is the cutting edge research that is being done, showing that Autism may be much more than “just” a psychological disorder. In fact, with ever increasing research findings showing links to gastrointestinal dysfunction, immune dysregulation and  acquired mitochondrial disease, I believe “autism” is much more of a medical condition than anyone may have first suspected.

Last summer, I wrote about this conference in Arkansas (and what the microbiome has to do with Autism).  If you missed it, the GREAT news is that the conference was archived and can be viewed here.

If you prefer to read versus watch te conference replay you can view this special edition of the scientific journal Microbial Ecology in Health and Disease. Read the collection of articles in the section “The Microbiome in Autism Spectrum Disorders”. Open access to the journal can be found here:

This special edition is still “in process” so check back often for even more research and updates!


If you have a child with Autism and have been told there is little you can do besides therapy, ABA and come to terms with the diagnosis, I would encourage you to KEEP looking and asking questions!! You may find somethings to try in these posts about AUTISM PREVENTION.

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MITOXIC- Why Anesthesia may not be good for any of us, especially Mitochondrial disease Patients


After hearing a friend tell me the story this week of her daughter’s pre-op surgery experience at a major Children’s Hospital (ranking among the top 10 in the country), I knew that this post had been in my draft folder waaay too long and it was time to publish it, in hopes that it will make a positive difference in another child’s life.

My friend’s story:

” There was an interesting moment when I was speaking with the anesthesiologist who was probably 60+ years old. I asked specifically what drugs they would use. He said that they’d start off with nitrous oxide. I told him that she couldn’t have nitrous because of an MTHFR genetic snp, And he looked at me like I had two heads. So did the 20 something anesthesia resident but she started googling it on her phone as we were talking. They left the room and came back and said there was another drug that they could use. Then there were several residents med students who were pretty surprised that I knew about this genetic susceptibility & curious to know more.”

I am convinced my friend saved her daughter’s life with her knowledge and her willingness to advocate for her daughter in that moment. In our journey, I have come across so many parents who have had children who react adversely to anesthesia, interestingly enough many of them NOW have a diagnosis of mito, autism, developmental delays, seizure disorders and neurological complications.

Anesthesia is necessary. This post is not anti-anesthesia. But I believe, like with so many other exposures in our environment, that there are reasons to be cautious with this group of powerful chemical agent.

A while ago, this article came across my news feed:

“Researchers from Cincinnati Children’s Hospital Medical Center report June 5 the Annals of Neurology that testing in laboratory mice shows anesthesia’s neurotoxic effects depend on the age of brain neurons – not the age of the animal undergoing anesthesia, as once thought.” (emphasis added)

And even though this article is over a year old, I found it interesting to read the comments from mothers of children who had undergone anesthesia many times, some as many as 20-30 times in their short 5-10 year lifespans. They commented saying that no one had ever warned them of the dangers of anesthesia or that it could have any negative impact on their child’s health. My jaw was on the floor. Why? Because ever since enteringthe mitochondrial community, there are 3 commonalities that I have seen in a strikingly LARGE percentage of mito patients: Adverse, idiopathic, unexplained, “weird” , unheard of reactions  to: 1) medications (including supplements), 2) vaccines, and 3) ANESTHESIA.

When I dig into the literature, I quickly find that I am not the only person to have made this observation, and I am very grateful for the individuals who have dedicated their careers to studying the impact of anesthesia on humans, especially those with mitochondrial disease. Below is a recap of some of my research and literature searches on how anesthesia impacts different groups of individuals including those with mitochondrial disease, those with autism, young children and all of us.

Children and Anesthesia

Anesthesia Research: Impact On Children And The Developing Brain

All of the anesthesia gases that are used (sevoflurane, isoflurane, desflurane, nitrous oxide), and common IV medicines like propofol and midazolam all cause injury in the neonatal animal models of the developing brain. Opioid medications such as morphine or fentanyl, and the newer sedative agent dexmedetomidine, have not been shown to cause this injury thus far, although more research is needed.

Use of anesthetic agents in neonates and young children.

 Animal studies suggest that neurodegeneration, with possible cognitive sequelae, is a potential long-term risk of anesthetics in neonatal and young pediatric patients. The existing nonclinical data implicate not only NMDA-receptor antagonists, but also drugs that potentiate gamma-aminobutyric acid signal transduction, as potentially neurotoxic to the developing brain. The potential for the combination of drugs that have activity at both receptor systems or that can induce more or less neurotoxicity is not clear; however, recent nonclinical data suggest that some combinations may be more neurotoxic than the individual components.

Mechanistic Insights into Neurotoxicity Induced by Anesthetics in the Developing Brain

Compelling evidence has shown that exposure to anesthetics used in the clinic can cause neurodegeneration in the mammalian developing brain, but the basis of this is not clear. Neurotoxicity induced by exposure to anesthestics in early life involves neuroapoptosis and impairment of neurodevelopmental processes such as neurogenesis, synaptogenesis and immature glial development. These effects may subsequently contribute to behavior abnormalities in later life.

Autism and Anesthesia

Thinking Out Loud- Anesthesia and Autism

I am the only co-founder of TMR whose child’s autism was triggered by anesthesia.    My son’s story mimics the all too familiar vaccine-injury stories which seem to be multiplying in droves.  The only difference?  His regression occurred after an elective surgery I will regret the rest of my life.

After learning about the chemical components of anesthesia and how they affect glutathione, methylation, and metabolic pathways, I feel strongly that our ASD community needs education and awareness on the topic.  Why?  Because many of our children will need surgery in their lifetimes.   Many of them will have to be put under for dental procedures.  Is there a way to navigate a necessary chemical exposure so as to minimize side-effects and potential regressions?  Watch as I discuss anesthesia and our ASD children with my hero, Sym Rankin.

Risk of Anesthesia Regression in Children with Autism Spectrum Disorder and Mitochondrial Dysfunction

Children with autism spectrum disorder (ASD) have a range of medical problems involving many organ systems. A subset of children with ASD hasve abnormal mitochondrial energy production and function that contributes to their physical, cognitive, and behavioral impairments. The presence of mitochondrial dysfunction increases the risk for potential damage to the brain, which is dependent on oxidative metabolism. This risk is more pronounced during procedures that require anesthesia. Because ASD children often undergo medical procedures (like endoscopies, adenoidectomies, tonsillectomies, and ear tube placement) requiring anesthesia, regression with anesthesia is of particular concern for the subset of children with ASD and mitochondrial dysfunction.

Anesthesia and Autistic Individuals

Recently published research supports the potential for problems.3 A retrospective study based on medical and school records from over 5,000 children born between 1976 and 1982 in Olmstead County, Minnesota, found that one exposure to anesthesia was not harmful. More than one, however, doubled the risk that a child would be identified as having a learning disability before the age of 19. That risk increased with a longer duration of the anesthetic. The exposures were between birth and four years of age: a very critical time of brain development.

The anesthetics primarily used in the procedures under review in the Olmsted County study were halothane and nitrous oxide. Halothane is a highly fat-soluble drug that is difficult for the liver to metabolize. Nitrous oxide can deactivate methionine synthase, which is a B12-dependent enzyme important in the methylation cycle. What we can learn from that study is that administering a fat-soluble toxin, followed by inhibition of DNA methylation, might result in “learning disabilities.” Although use of halothane and nitrous oxide is not as common as it used to be, it is not a great leap to hypothesize that use of similar chemicals and toxins might play a role in triggering or exacerbating manifestations of ASD.

As an anesthetic provider, I consider it part of my mission to help educate my colleagues and to help them understand that our children are sick – not just autistic. That is also my mission as a parent, as it is the mission of all parents.

Toxic Agents- Recap of Society for Pediatric Anesthesia Lecture

Dr. Maynes began his lecture by suggesting that anesthesiologists need to take a holistic look at how our interventions impact our patients’ physiology and metabolism. Focusing on the mitochondria as a mediator of cellular physiology, he reviewed its critical role in many cellular pathways including the cellular stress response, aging and neurodegenerative diseases, and the generation of reactive oxygen species as a non-pathologic signaling pathway.

He next noted that there are many different points in the electron transport chain where multiple anesthetic agents influence mitochondrial activity, while these drugs can impact mitochondrial integrity as well. For example, studies have shown that exposure to one MAC hour of isoflurane alters mitochondrial morphology, exposure to ketamine decreases mitochondrial biomass, isoflurane, propofol, ketamine, and midazolam can alter mitochondrial membrane polarization, and sevoflurane can affect mitochondrial fusion and induce protein misfolding.

In addition, various anesthetics can induce changes in mitochondrial DNA, and these changes in the mitochondrial genome can impact cell function as well. While opioids, in general, have less effect on mitochondrial function, Dr. Maynes pointed out that morphine is a specific inhibitor of isocitrate dehydrogenase (IDH-1), an enzyme involved in the conversion of isocitrate to alpha-ketoglutarate in the citric acid cycle. Importantly, mutations in IDH-1 affect DNA methylation, providing a potential link between the morphine we routinely administer and changes in DNA methylation, a finding not uncommon in various cancers.

Moving on, he reported that autism is the most prevalent secondary diagnosis in children undergoing an anesthetic at Sick Kids, while evidence of “atypical” mitochondrial deficiency is present in approximately 40% of children with autism, suggesting that this population of children may be particularly sensitive to our anesthetic agents.

MTHFR and Anesthesia

When Nitrous Oxide is No Laughing Matter

Nitrous oxide inhibits the activity of methionine synthetase, which converts homocysteine to methionine, raising homocysteine levels. It has been suggested that N2O be avoided in these patients. There has been a report of a fatal outcome in a patient with type III disease due to compound heterozygosity including a novel MTHFR mutation (1755 G→A), which was inherited in concert with two common MTHFR polymorphisms, both of which are associated with diminished enzyme activity.(11) This previously undiagnosed child had exposure to N2O twice within four days. Twenty-five days after the first exposure seizures and apnea developed, with hypotonia and areflexia.

Death was from a respiratory arrest on postoperative day 46. Presumably the N2O induced inhibition of methionine synthetase (see below) in addition to the genetic defect in tetrahydrofolate reductase and led to death secondary to methionine deficiency.

Adverse Effect of Nitrous Oxide in a Child with 5,10-Methylenetetrahydrofolate Reductase Deficiency

“patients with a diagnosis of severe MTHFR deficiency should not receive nitrous oxide as anesthesia. In the case of emergency procedures, patients whose clinical presentation fits that of severe MTHFR deficiency, even if the disorder has not been diagnosed, should also not receive nitrous oxide. In the case of elective procedures, patients whose clinical presentation fits that of severe MTHFR deficiency should be evaluated, and the diagnosis should be ruled out before anesthesia with nitrous oxide is contemplated.”

General anesthesia and methylenetetrahydrofolate reductase deficiency.

Methylenetetrahydrofolate reductase (MTHFR) deficiency is an autosomal recessive disorder with a spectrum of manifestations including neurological symptoms, premature arteriosclerosis, and venous and arterial thrombosis. Most patients are heterozygous for multiple MTHFR substitutions; small minorities are homozygous for mutations at this locus. Among these mutations, the C677T polymorphism is the most deleterious. Nitrous oxide use in anesthesia leads to significant increases in plasma homocysteine. We present a patient undergoing urgent surgery with a preoperative diagnosis of homozygous MTHFR deficiency.

Anesthesia and Your Genetics- Blog Talk Radio Show: Dr. Jess Armine

Nurse anesthetist, Sym Cusimano Rankin, RN, CRNA witnessed an alarming increase in chronic and autoimmune diseases; and as a mother, she has seen her son’s journey of recovery from autism. Autistic children often undergo medical and dental procedures requiring anesthesia. All anesthetic agents have relative risks and benefits. Special caution is warranted with agents that effect methylation and mitochondrial function

Mitochondrial Disease and Anesthesia

Anesthesia and Mitochondrial Cytopathies

An increased awareness is needed whenever a person with a mitochondrial cytopathy is contemplating or undergoing a surgical procedure. By virtue of the illness itself, there are greater risks involved with every medical intervention. The safest anesthetic is not known and the choice of anesthetic must be individualized to the patient’s particular needs. Although anesthetic agents may play a contributing factor in causing an adverse event associated with surgery, the illness, the stress of that illness, the surgical procedure and concurrent infections may play a larger role in causing neurologic deterioration.

Mitochondrial disorders and general anaesthesia: a case series and review

Meticulous individual assessment is important due to the diverse nature of mitochondrial disease and, as with any surgical case, careful attention to fluid management is essential. Preoperative fasting in this patient group may be particularly hazardous as they have a tendency to develop lactic acidosis which will be exacerbated by periods of metabolic stress such as that seen during surgical procedures and perioperative fasting. We recommend the routine, perioperative use of lactate free i.v. fluids in all patients with mitochondrial disease undergoing GA (such as 5% dextrose–0.9% saline). I.V. fluids should be commenced during the preoperative fasting period to allow maintenance of normoglycaemia, as excessive glycolytic oxidation of glucose in this patient group may increase plasma lactate levels.

As may be expected, those patients with more severe clinical disease seem to be at greater risk after GA and further work should be directed towards Leigh’s disease in particular, especially those with documented variable respiratory drive.

Mitoaction’s Webinar on Anesthesia

Anesthesia poses specific risks for children and adults with mitochondrial disease. Join  us this month with Dr. Andre Mattman from Vancouver General Hospital to learn more about risks, precautions and recommendations for anesthesia use in mitochondrial disease patients.

Anesthetic Considerations in Mitochondrial Disease- UMD

All clinical manifestations of MD, including seizures, arrhythmias, cardiac dysfunction, myopathy, and endocrinopathies, can be worsened by trauma, illness, or surgical stress. Although the prevalence of MD is high (Skladal et al 2003), the heterogeneity of disease phenotypes makes clinical trials difficult. No controlled trials of different anesthetic agents or techniques have been conducted in patients with MD. Adverse effects on mitochondrial function of many agents used in anesthesia have been documented in vitro, but there are few reports of adverse events in vivo. Even agents like propofol, for which adverse effects have been reported both in vitro and in vivo, have been used successfully in isolated cases. Thus, the theoretical effects of any agent need to be considered in the general context of any one patient’s medical history. It is important to realize that the absence of published reports of adverse effects with any given agent does not mean that the agent is safe to use but may simply reflect a publication bias.

Nitrous Oxide and Monkeys & Methionine: Pathogenesis of subacute combined degeneration: a result of methyl group deficiency.

Four pairs of monkeys were maintained in an atmosphere of nitrous oxide under conditions which had previously been shown to produce subacute combined degeneration (SCD) of the spinal cord. The diet of one of each pair was supplemented with methionine. In every case the monkey with the unsupplemented diet became ataxic at around 10 weeks and the disorder progressed over a period of 2-3 weeks until the animal was moribund. During this period there was no detectable clinical change in the monkeys receiving methionine supplementation. Microscopical examination of the spinal cord and peripheral nerves of the unsupplemented monkeys showed the classical changes of SCD. The histological changes correlated with the clinical observations. Sections form the methionine-supplemented monkeys showed no change or only slight changes. These results suggest that, in these animals, inability to resynthesise methionine from homocysteine leads to SCD. It seems probable that the primary lesion producing SCD in human beings with pernicious anaemia is also inability to maintain methionine biosynthesis.

I will end with another story from a mom. As parents we MUST become our child’s best advocate. NO ONE knows them better than we do, as their parents.

“My son went in to Children’s Hospital today for his tongue tie surgery. And wouldn’t you know it, he gets a surgeon from Europe who takes me aside to discuss him not being vaccinated. He says: “since he’s 2, and you chose not to vaccinate him, his immune system is very strong and he will be able to process the anesthesia so don’t worry mom, you did good.” There are doctors out there who know the truth and support us “whacko” parents. And he was right. My son flew through like a champ and within minutes of waking up, could walk completely steadily and had zero side effects of the anesthesia.”

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Lady A’s Energy Bites- Gluten Free, Dairy Free, Soy Free and Low Salicylate

unnamedA while back a dear friend (miss you e.b.)

made this recipe and brought it to a recipe snack swap.

They were so yummy! Tonight I am going to a healthy living potluck and

I came across the recipe yesterday, and wondered if I could modify it for Lady A.

Here is what I came up with:


  • 1 cup Bob’s Red Mill Gluten Free Oatmeal
  • ½ cup cashew butter (low salicylate)
  • ⅓ cup maple syrup
  • ½ cup pumpkin seeds- w/Sea salt (we like this brand)
  • ½ cup ground flaxseed (in a clean supplement form here)
  • 1 tsp Frontier Alcohol-free vanilla
  • Optional – mini chocolate chips (we omitted these for Lady A’s version, since chocolate is not on the approved food list at the moment)unnamed-3

Mix everything together in a bowl and refrigerate for about an hour.

Remove and roll into bite-sized balls! Pop one in your mouth and ENJOY!

unnamed-2Rolling tip- I rolled the balls in plastic wrap (non BPA!) because when I used my bare hands the stickiness of the mixture kept making the balls fall apart…. oops!


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Mommy Book Report: Nutrient Power- Heal your Biochemistry and Heal your Brain

A few weeks ago I finished reading this book:

Nutrient Power- Heal Your Biochemistry and Heal Your Brain

written by William Walsh PhD

Earlier this year our daughter had an adverse reaction to a nutritional supplement that we were trying with her (based on her medical team’s recommendation) in an effort to improve her health.  Unfortunately, after this happened, there were few clues or explanations as to what or why her response was the way it was. In one of the many facebook groups I belong to, filled with incredibly astute parents with backgrounds in engineering, medicine, law, and even biochemistry, I stumbled upon this post that someone had linked to. These words (from Dr. Walsh) jumped off the page at me:

“There is increasing evidence that folates act as deacetylase inhibitors that enhance gene expression of SERT reuptake proteins known as “transporters”. Serotonin reuptake is a far more dominant factor than the amount of serotonin present. Folate supplements (together with B-12) are very effective in improving methylation in most undermethylated persons. However, folate supplements should be avoided for undermethylated patients who suffer from depression, anxiety, or other mental disorders that involve low activity at serotonin receptors.”

and this:

“The benefits from improving methylation are overwhelmed by weakened serotonin neurotransmission for these persons. Methylfolate supplements are a clever approach for coping with undermethylation in persons with MTHFR enzyme weaknesses. However the potency of methylfolate has been greatly exaggerated. The methylation cycle spins constantly with more than a million methylation reactions per second. The methylation cycle somewhat resembles the Indianapolis Speedway with traffic constantly spinning around the track. Methylfolate is what I call a “suicidal” nutrient, that is, a nutrient that acts only once. After a single pass through a portion of the cycle, methylfolate loses its identity and becomes part of the garden-variety THF pool. Methylfolate is somewhat more effective that folic acid and folinic acid, but is not as effective as advertised. The bottom line is that methylfolate and other folate supplements are very effective in enhancing methylation for autism and other conditions that are not dominated by low serotonin activity.”

My interest was PEAKED and I was interested to learn more. Why? Because until I read this passage, I had never heard ANYONE allude that there may be a group of individuals who methylfolate supplementation may not be ideal for. Off I went to the library to get Dr. Walsh’s book and learn more. I already was well aware of the healing properties of balancing one’s biochemistry, so to assume brain disorders could be healed by balancing this biochemistry also, made perfect sense in my own chemistry (turned biochemistry) brain! ;)

Here are my top 10 takeaways from this book- Many of which I am researching further. This book does contain a biblography full of references, but much of Dr. Walsh’s research seems to have been presented at scientific meetings and in poster presentations that I have not been able to access (since I am not a member of those medical groups or did not attend the meeting).

1. Histamine is inversely proportional to methylation status- ie. High Histamine= undermethylation, low histamine= overmethylation

2. because of #1, Whole Blood Histamine blood test can be used as a measurement of methylation status. (Sam/Sah ratio is also a very reliable measurement for methylation, however this test is difficult to obtain commercially). Whole blood Histamine can be done at Labcorp or Quest.

3. Walsh provides an albeit technical but thorough overview of Epigentics and how they impact Mental Health. He defines (scientifically) terms such as methylation, histone modification and chromatin and how they relate to nutrient therapy and epigenetic disorders including OCD, ASPD, Anorexia, and Autism, to name a few. Chapter 4 is a must read if you are struggling with the nature vs. nurture mentality of genes vs. environment. Clue- It is BOTH.. and how they interact and genes only are NOT our destiny!

4. Schizophrenia– Walsh describes in chapter 5 the 3 Major subtypes of Schizophrenia including over, under methylation and pyrrole disorder. He also give an excellent historical background on the disorder and the theories who have preceded his work. You can hear him speak here about some of his work with schizophrenics:

5.Depression– There are 5 different types of depression that Walsh classifies in his book, rather than the ONE diagnosis of depression that mainstream psychiatry uses which equals one size fits all pharmaceutical= anti-depressant. I am sure you know someone who has done WORSE on an antidepressant Walsh explains why through explaining these different types, based on biochemical markers.

6. Autism– a topic near and dear to so many of our hearts. Walsh presents a list of Biochemical features found in Autism that include: low glutathione, under methyation, elevated blood toxins, copper overload, zinc deficiency, vitamin A deficiency, low magnesium, and deficiency of selenium and cysteine (to name a few). He covers oxidative stress and  shares biochemical therapies that he has found to work with the autistic population that he has worked with including normalization of methyl/acetyl levels and reversal of deviant gene marks. He also provides a strong warning about the use of Risperdal and the lessons we should have learned from Thalidomide babies.

Listen here for more of Walsh speaking about Autism:

7. Walsh shares some of his early volunteer work in Prison with inmates in the 70’s , that is fascinating.  More here. This quote/study was particularly shocking to me-

“Our test group consisted of 24 pairs of brothers who lived in the same household and attended the same school. Each pair consisted of a child with a history of delinquency and violent assaults and a brother with ideal behavior and good academics. In essence we found 24 families with a proverbial child from hell and an all-American boy living in the same family….The samples were coded and blinded to the testing laboratory and the researchers. After breaking the code we learned that the most of the well-behaved controls had the expected levels of the trace metals tested. In contrast, most violent subjects exhibited abnormal levels, especially with respect to copper, zinc, lead, and cadmium. In general, the violent children exhibited higher lead and cadmium levels than did the controls. However the test group was about evenly split between children with elevated Cu/Zn ratios and others with depressed Cu/Zn ratios. Note of the well-behaved children exhibited a Cu/Zn imbalance.”

He describes a second study where 96 extremely violent males and 96 nonviolent male controls from the Chicago area were tested. Half of the violent group was incarcerated and the other was living in society. The findings found 35 violent subjects had elevated Cu/Zn ratios, 57 had low Cu/Zn and the remaining 4 tested normal. 3 non violent had abnormal ratios and 93 did not. This led to research funded by the Violence Research foundation which blinded samples were sent from California Prisons as well as non-violent controls. Walsh’s lab was successful in identifying the CRIMINALS in better than 90% of the cases based on chemistry alone!

Here is a speech he gave on the work he has done with the prison and criminal populations.

And another article he wrote here.

And an article featured in Crime Times on sub-types found in killers and criminals.

And a feature in Science News here.

8. On Walsh’s website, he presents a fascinating School Shooter hypothesis based on the nutritional deficiencies and biochemistry abnormalities he describes in this book- you can read some of his theory here or watch it here:

9. Copper/Zinc imbalance can cause a whole host of mental and medial issues- including Post Partum Depression in new mothers, autism, schizophrenia and aggressive and criminal behavior. This is one of the themes and abnormal biomarkers that can be found throughout this book.

10. Video Cliff note version: well worth 2 hours of your time to listen to this lecture from Dr.Walsh himself.


This book has opened up some BIG doors (or should I sayBIG rabbit holes) for my research. Big clues for our family were found on page 24 and 25 as walsh talks about METHIONINE and FOLATE in a subgroup or people.

Extra: Walsh’s comments about a number of conditions archived from a message board here.


Posted in (Mommy) Book Report, ADHD, Allergies, Autism, Genetics, Medical, Methylation | Tagged , , , , , , , , , , , | 4 Comments

Merry Christmas 2014

Babyfoodsteps yearly tradition… to share with you a homemade gift!

You can see our gifts of 4 years past here, here, here and here. Now on to #5!

This year our gift is a Mason Jar Oil Candle.

The inspiration for this gift and project came from here (gotta love pinterest!).


First the materials:

Mason jar with lid

1/8 couplings (Like this)

1/8 nipples (like this, found in the lighting dept of hardware store)

3/8 inch washer (need 2 per lamp, like this)

a brass nut

and a 100% cotton “wick” (like this)

pinecones, pine sprigs, berries, cinnamon sticks


mason jar candle lid


After punching or drilling a hole in the mason jar lid (we found using a center hole punch worked best), assemble the wick holder in the order shown in the photo (coupler, washer, lid, washer, nut, nipple, wick). I tied a knot at the end of the wick to keep it from falling through and tugged on it a bit so it went up into the nipple and stuck.

mason jar candle assembleFill the jars with all things holiday. We chose pinecones, cranberries, cinnamon sticks, pine sprigs and berry sprigs.  Fill the jars with water until you reach the last 1/6 of the jar and then top it off with oil (lamp oil, olive oil, citronella oil, almost any type of burn-able oil will do, we tried canola). Place the lid on and allow the oil to travel up the wick, then light and enjoy!

mason jar candle lit

We packaged these up this year and gave them as gifts to our neighbors and friends! Fun for the holidays and then here are some ideas on other things you can fill it with year round, not to mention and handy thing to have in an emergency when the power is out!

Merry Christmas from Babyfoodsteps! We hope the new year brings health and happiness to you and your family.

mason jar cndle wrapped




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