Ebook Published: Top 10 Tests for PANS, PANDAS and Autoimmune Encephalitis

We are excited to announce the launch of our newest ebook:

The Top 10 Tests for PANS, PANDAS and Autoimmune Encephalitis

When your child exhibits symptoms such as irritability, aggression, OCD, Tics, eating restrictions or urinary accidents all we want to do as parents is help them feel better and smile again. Our parental ‘red flags’ go up and alarm bells go off, when these symptoms happen abruptly and we are experiencing a child who is unrecognizable from the child we have been raising days, weeks or months before. These symptoms can point to a collection of conditions called PANS, PANDAS and Autoimmune Encephalitis or brains on fire for our loved one.  PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. Autoimmune Encephalitis is abbreviated AE

In this ebook we help a parents take into account the underlying biochemistry of the body and laboratory tests which may give clues as to why our child is feeling and acting the way they are. This book will empower parents to partner with their child’s physician to look deeper into the root causes of their child’s challenges, leading them to actionable steps they can make to improve their child’s quality of life and their own. 

Kristi Wees is a chemist and a medical advocate who takes the seemingly complicated world of laboratory blood testing for a grouping of conditions called PANS, PANDAS and Autoimmune Encephalitis and describes these tests in a way that parents can understand, giving them the information they need to have an educated conversation with their child’s pediatrician.

A little history about why we wrote this book:

This ebook has been a few years in the making, starting from the 6 moms who approached us in the fall of 2016 (separate from one another), asking for our medical advocacy assistance in navigating the medical system in Pittsburgh, Pennsylvania for their children. Fast forward 6 months later and the group had organically( by word of mouth) grown to well over 25-30 local moms with similar concerns and need for medical help in properly diagnosing and treating their children with symptoms of these 3 conditions. Looking back, we didn’t really understand exactly why we were taking a deep dive into the science and laboratory methods for understanding these conditions that were little known to us just a few years prior.

It wasn’t until the fall of 2019, that God showed us exactly why he had taken us down that path. And for that reason, this ebook is dedicated to EBW. Thank you buddy for teaching us all so much more about these topics. We love you and will always be here to cheer you on!

This book is the compilation of much of what we have learned on these many journeys. We hope you find it helpful for your family or a family you care deeply about. It is written in an easy to understand format for families to dig into but it also contains numerous medical and scientific links that give it the ability to be shared with pediatricians, specialists and primary care providers, also.

ABC’s of Autism: M is for Mitochondria

M is for Mitochondrial Dysfunction. Mito-what you may be asking yourself. Take a moment and go back to high school biology class… remember that oval looking “organelle” in the cell with the squiggly lines- those little guys are your MITOCHONDRIA and they make energy to power every cell (except red blood cells) in your body! Just like little batteries. Take a look at these videos below to learn more.

Again I know you but be wondering what do mitochondria have to do with Autism.

To understand that you need to imagine a large city on a very hot day…when everyone is running their air conditioners and there is not enough energy to meet the demands of the body. A BROWN OUT… or a decrease in energy production until the demands (the air conditioners) lessen. So think about the same concept in the body and wonder for a moment what a brain running on half or quarter power might look like? Might it cause behavioral, psychiatric, aggressive, regressive or other types of behaviors that are often connected with a diagnosis of autism?

Turns out that is exactly what some researchers have found (here, here, here and here) when studying the biochemistry of autism and what is going on at a cellular level.

You can check out these Empowered Medical Advocacy resources if you want to dig deeper :

Mitochondrial Disease and Autism Webinar

MITOXIC Series

Mitochondrial Medical Home Presentation

ABC’s of Autism: L is for Lactic Acid

What is Lactic Acid? Chance are you have heard of it from runners, specifically long-distance runners or those who run marathons. Lactic acid is the chemical responsible for the ‘burn’ that is felt when muscles are strained for a long time, such as is running for long distances.

Many people confuse Lactic acid and Lactose… one hint, LACTIC ACID is not the sugar found in milk… that is Lactose. But lactic acid was first isolated from milk… As its name implies.

What does Lactic acid have to do with Autism? You will need to read our next post about M is for Mitochondria to get the full story but elevated Lactic Acid can be a red flag for mitochondrial dysfunction or disease which IS intimately connected with autism and autistic-like behaviors.

So how do you know if your child has a high or low Lactic Acid?

There’s a test for that!

Lactic Acid Test ( also known as Lactate or L-lactate) is:

A test that measures the amount of lactate in the blood. Lactate is a product of cell metabolism. Depending on pH, it is sometimes present in the form of lactic acid. However, with the neutral pH of the body, most of it will be present in the form of lactate.

Normally, the level of lactate in blood is low. It is produced in excess by muscle cells, red blood cells, brain, and other tissues when there is insufficient oxygen at the cellular level or when the primary way of producing energy in the cells is disrupted.

The principal means of producing energy within cells occurs in the mitochondria, tiny power stations inside most cells of the body. The mitochondria use glucose and oxygen to produce ATP (adenosine triphosphate), the body’s primary source of energy. This is called aerobic energy production.

Whenever cellular oxygen levels decrease and/or the mitochondria are not functioning properly, the body must turn to less efficient energy production (anaerobic energy production) to metabolize glucose and produce ATP. The primary byproduct of this anaerobic process is lactic acid. Lactic acid can accumulate when it is produced faster than the liver can break it down.

When lactic acid levels increase significantly in the blood, the affected person is said to have hyperlactatemia, which can progress to lactic acidosis as more lactic acid accumulates. The body can often compensate for the effects of hyperlactatemia, but lactic acidosis can be severe enough to disrupt a person’s acid/base (pH) balance and cause symptoms such as muscular weakness, rapid breathing, nausea, vomiting, sweating, and even coma. (source)

Measuring lactic acid is not as simple and straightforward as it sounds… Here are some of the things I have learned about this sometimes troublesome biochemical ( especially in regards to mitochondrial disease)…

  1. Different labs measure lactic acid in different units, making it difficult to compare one draw to the next ESP if done at different labs. Here is a handy
    lactic acid units converter . That converts from mg/dL to mmol/L and vice versa, so you can compare apples to apples.
  2. The way in which a lactic acid sample is drawn and processed is very important and can affect the value of the sample.
  3. Crying, struggling or fighting ( for instance a toddler that hates getting their blood drawn or an iv) can elevate a lactate acid reading.

What can you do about Lactic Acid?

This post shares about one method to discuss with your medical team if you find an abnormally high Lactic Acid for your loved one. Hint: it is a vitamin!

To learn more about other resources that can help you help your child, please check out our Empowered Library, here.

ABC’s of Autism: K is for Vitamin K1 & K2

April is Autism Awareness Month and last year we started this ABC’s of Autism Series. This year we are picking up where we left off last April and digging into the letter K!

K is for Vitamin K…there are two important ones to discuss: K1 and K2. Let’s start at the very beginning… it’s a very good place to start. Both Vitamin  K1 and K2  are fat soluable vitamins along with their partners Vitamin A, D and E, meaning that when consumed with fat they are better absorbed and are not easily “flushed” from the body in water, but instead excess amounts of these vitamins can be “stored” in fat in the body. Beacuse of this reason, it is important to test for vitamin levels prior to supplementing with fat soluble vitamins, so excess absorbtion can be monitored. 

Vitamin K1  also called phylloquinone is found mostly in green leafy vegtables. This type makes up somewhere between 75-90% of what we consume as humans. Kale Collard greens and spinach contain some of the highest amounts of Vitamin K1 in food sources. 

Vitamin K2 also callded menaquinones (MKs) and based on the length of the chain range from MK4-13.  This type of Vitamin K comes from fermented food and animal products as well as being produced by beneficial gut bacteria. Natto, a fermented soybean product from Japan is especially high in K2 (specifically MK-7)

More infor on the basics from the Merck Manual.

So now that we have some of the basics… what does vitamin K have to do with Autism.

Many know vitamin K to be involved with blood clotting, which it is… specifically Vitamin K1 and the infamous Vitamin K “Shot” that is given to many newborns to prevent vitamin K deficiency bleeding (VKDB). While those with autism are not commonly known to have a co-morbidity of blood clotting disorders, you may still be wondering what does Vitamin K have to do with Autism.

Let me share a story… I have heard from numerous parents of children with autism that they have seen their child’s behavior drastically worsens upon giving their child calcium supplments. I even had one mother who wasn not supplementing with calcium but who determined the calcium fortified orange juice turned her child into a behavioral nightmare, but when she bought the store brand that was not fortified, her child was able to follow directions and was pleasant and happy. Why could this be and what does it have to do with Vitamin K2?

The big clue comes from when you realize Vitamin K1(some- what) and K2 (more so) role in calcium homeostasis, bone health and even cardivascular health and when you consider a vast amount of our vitamin K2 is made by a healthy gut bacteria.  It is well know that individuals with autism experience gastrointestinal disorders and issues at a higher rate than others, and many of these individuals have been found to have impaired gut bacteria (microbiomes). The body needs Vitamin K2, and without it the body cannot direct calcium to the bones where it’s needed; instead, the calcium resides in soft tissue (like the blood vessles/arteries and in the brain)–which can be termed the  “calcium paradox.”

There is much much more science behind this, too much to explain here, but consider this landmark study looking at the nutrition status in children and adults with autism . It found that that Vitamin K (and Biotin) had the strongest correlation with the Parent Global Impression (PGI-R) scale:

“Regression analysis revealed that the degree of improvement on the Average Change of the PGI-R was strongly associated with several biomarkers (adj. R2 = 0.61, p < 0.0005) with the initial levels of biotin and vitamin K being the most significant (p < 0.05); both biotin and vitamin K are made by beneficial intestinal flora.

Is vitamin K status significant for those families impacted by autism?

Yes!

Is more research needed to determine how and why and what can be done to help?

Yes!

In the meantime, due to the readily available testing and supplementation via food and over the counter supplements, we hope this K is for Vitamin K presents some research and questions that families can discuss with their pediatrician or specialist on their next visit. If we can be of assistance in helping you talk with your doctor, please contact us here

More Resources:

You can learn much more about calcium and the Vitamin K2 Link by reading this book: The Calcium Paradox by Kate Rheaume Bleue.

One Mom’s Story of Vitamin K and her Daughter’s Autism

This Site shares MANY studies connecting Calcium Homeostasis, Autism and K2

Speculations on Vitamin K, VKORC1 Genotype and Autism

ABC’s of Autism: J is for Jaundice

What is Jaundice?

Jaundice is a yellowing of the skin or whites of the eyes seen often in newborns. Up to 60 % of term infants and 80% of preterm infants experience Jaundice. Most cases are caused by an immature liver’s ability to process bilirubin (a yellow pigment of red blood cells) which builds up and causes jaundice.  Jaundice is easily treated with phototherapy which is the use of artificial lights to aid in the body’s metabolism of the bilirubin.

A 2010 study found a 67% higher incidence of autism of those babies who had jaundice. Interestingly the study also found:

“Among children who developed autism, those born in the fall and winter were almost twice as likely to have had jaundice following birth as those born in the spring and summer.”

This finding makes us wonder about the Vitamin D status of the infant and the mother since other studies have found a correlation between Vitamin D deficiency and low Vitamin D status and Autism.

If your child or infant is experiencing any symptoms of jaundice, speak with your pediatrician right away and have them investigate their liver function and bilirubin status. High levles of bilirubin are linked to brain damage and a condition called kernicterus, so your concerns should be taken seriously and investigated by laboratory testing.