Dear #ChicagoMed ~ #MitoIsReal

#ChicagoMed

Last Tuesday I set my DVR to record ChicagoMed, a show I had never watched before, but one which I had heard would be featuring a storyline about mitochondrial disease. I was curious how this diagnosis would be portrayed on my TV screen and hoped that this would bring some much needed awareness to a condition that our family has struggled to make sense of for the last 6 years.

What I saw transpire on the screen as storyline played out was disappointing to say the least not to mention irresponsible and damaging.

Here is the post I made on Facebook, moments after watching the show:

“After watching Chicago Med tonight and their story about ‪#‎mitochondrial‬ disease, I am so disappointed in the portrayal I witnessed. It was evident that little research had been done by the show’s staff since there were many inaccuracies, but it was even more evident they did not speak with ANY parents of children with mitochondrial disease. More education, research and awareness are the only ways to combat the mis-information that I believe are leading to parents being accused of medical child abuse. ‪#‎ChicagoMed‬ I urge you to work on another episode that presents ‪#‎mito‬in a different light, and highlights the real struggles families are facing every day with their children.”

This episode struck a chord with me, and so many others in the mitochondrial disease community because accusations of munchausen by proxy syndrome and medical child abuse (a term more recently used), has plagued the mito community for years if not decades. Just a few years ago the story of #JustinaPelletier hit mainstream media after over a year struggle for her parents to regain custody of their daughter from Massachusetts state custody. We blogged about her story here) It was eerie to see such similarity in some of the inaccurate details played out on the screen with the ChicagoMed actors and what Justina’s family suffered through in real life. Sadly though this was not the first case of this, and upon moving to Pittsburgh I learned of another family who had experienced something very similar with 2 of their children nearly 10 years prior to Justina’s case. Sadly though these 2 families are not the only two families who have dealt with the heartache of having their children diagnosed with mitochondrial disease AND be accused of such charges. (Just a few of the mitochondrial cases which have made it into the news can be found here, here, here and here).

Following the events of the Justina Pelletier case I was asked to join the ADVOCACY Taskforce that was organized by Mitoaction. I was part of a team of medical professionals, scientific professionals, attorneys, parents and ethics experts who were brought together to improve the current environment for families struggling to care for their loved ones with mitochondrial disease. The fruits of that task force’s research, passionate discussions and efforts can be found here.

Back to ChicagoMed:

In the days following the episode of Chicago Med (entitled-Reunion,  transcript here ) many organizations and individuals that support the mitochondrial disease community, came together in a show of support and dismay at the recent portrayal of Mitochondrial Disease on the set of ChicagoMed. You can read some of their thoughts, feedback and letters to the producers here:

Mitoaction & UMDF: here

Mitoaction: here 

Mitochondrial Medicine Society: here 

Dr. Fran Kendall, Mitochondrial expert and metabolic geneticist with VMP: here and here

Dr. Richard Boles, Mitochondrial expert and metabolic geneticist with Courtagen: here

 

Patient/Parent Blogs:

Thedanceinmyfeet.blogspot.com

Tcapp.org

jbmcgee.com

Medium.com

greenawaltfamilylife.blogspot.com

 

No family should have to be told the shocking and devastating news that their child has mitochondrial disease, and likewise, no family should ever be accused of causing that illness either, in an ER, without consultation with ANY of the child’s treating physicians, particularly the specialist who gave the child the diagnosis in the first place.

ChicagoMed, do the right thing and come clean, become transparent and feature the real science about mito that you failed to look into for this show. Talking to one mito doctor on the phone for a few minutes doesn’t count in our book.

 

Resources for families:

Mitoaction Advocacy Tool Kit

UMDF What Every Parent Needs to Know

 

 

 

 

 

 

 

Posted in #1min4mito, Advocacy, Awareness, Medical, Mitoaction, Mitochondrial Disease, UMDF | Tagged , , , , , , , , , , | 2 Comments

The Future Of Genetics- NCC Collaborator Article

future of genetics graphic

Last Fall I was honored to be asked by NYMAC (New York Mid-Atlantic Collaborative) to write an article for a national genetics publication: The NCC (National Coordinating Center) Collaborator Newsletter. Recently this article was published in the January 2016 issue. My article on The “Future Of Genetics”can be found on page 10: NCC January 2016 Issue

A PDF of the issue can be read here: NCC Collaborator 2016 Wees pg 10

 

Here is the text of the article, which I wrote

(prior to editing):

 

Future of Genetics- A Consumer Perspective

By Kristi Wees MS Chem

NYMAC Consumer Advocate

MSGRC Social Media Coordinator

Blog- www.babyfoodsteps.com

https://babyfoodsteps.wordpress.com/about/our-story/

Seven years ago we embarked on a journey, for which we were unprepared. We couldn’t imagine that our little girl’s first years of life would be wrapped in misery and medical diagnostic mystery. Fast forward, to today and our family is empowered with knowledge, advocacy skills, and the hope we have gathered along the way. So what does the future of genetics look like from our perspective?

We have been told our daughter is suspected of having a mitochondrial disorder, which we were told, is genetic and congenital. Many have said there is no single test to diagnose it and there is no cure. Others told us that diet and environmental changes have no impact on disease progression. As parents, what we SAW in our daughter did not match what we were being TOLD. We saw her health drastically decline after every round of childhood vaccinations. We saw her exhibit autistic-like behaviors after introducing milk, and witnessed her neurological reactions to household products (hairspray, window cleaner, etc.). We began to “lose” her around 18 months; all while multiple sub-specialists were perplexed as to what could cause her symptoms.

Currently, no genetic cause has been found, after years of testing. As parents we have had to actively pursue, coordinate and research our daughter’s condition and care. No one connected her dots or her many specialists, until we stepped up to do that. Based on these personal experiences, in order for the future of genetics to be successful for every patient, three areas need to be addressed:

·             Environmental exposures must be equally considered in every case.  Unless a genetic condition has 100% penetrance, environmental factors do impact a patient’s life. “Environmental” includes everything from the micobiome to air quality; from medications to pesticides on food, and everything in between.

·             Epigenomics– Recognizing that this “turning on and off of genes” is modifiable through environmental factors, specifically diet and nutrition, is crucial; as is acknowledging that “inherited” does not equate to “genetic”.

·             Patients/family need to become EQUAL members of the care team to contribute to the individual’s care.  Parents prefer personalized care to “one-size-fits” all medical practice.

Many patients can experience an improved quality of life, with a concerted effort to integrate these areas into genetics practice irrespective of their disease prognosis. By empowering the patient/family to take an active role in their healthcare, it is possible to uncover creative, cost-effective, and disease-improving solutions for that patient, and also potentially others.

Our daughter’s future could not wait. We followed our instincts regarding diet and environmental changes. What we witnessed is nothing short of a miracle; our daughter re-emerged and returned to us. Today, she is a happy, engaged 6-year-old with a very BRIGHT future.

 

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Childhood Anxiety-All in Their Head or Their Belly?

 

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Check out my latest article in Pittsburgh Parent Magazine’s February 2016 issue.

This is a topic that seemed to consume some of the conversations I was having with friends, family and online in the fall when I wrote it. Childhood anxiety was everywhere I turned, so I turned to the literature and my research on underlying root (biochemical) causes of disease and here is some of what I found.  The more I read the more I learn that “psychiatric” disorders as they are so commonly classified are NOT all in our heads… and that the head bone really is connected to the whole body…including the belly!

Would love to know about your experiences with Childhood anxiety, leave a comment below. What helped YOUR child overcome this?

Childhood Anxiety- All in Their Head or Their Belly?  pg 16-17

Childhood Anxiety- All in Their Head or Their Belly? pg 36

 

The PDF versions of the story can be found here:

Anxiety Pittsburgh Parent Feb 2016

Anxiety Pittsburgh Parent Feb 2016 pg 38

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Merry Christmas 2015

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It’s that time of year again! Time to celebrate our Savior’s birth and rejoice in the GIFT of his love.  We love making and giving gifts to friends, family and neighbors at this time of  year and have shared many of our creations here at Babyfoodsteps over the years (’10, ’11, ’12, ’13, ’14)!

Wow that is alot of years of home-made goodness and Merry Christmas!:)

This year we decided to make an edible gift! After finding these cute jars in the Dollar Spot at Target, I set out to find a project on Pinterest that would fit nicely into them and stumbled acorss this blog post for Cranberry Apple Cider mix. That sounded Yummy! So I headed out to the store to get the ingredients (most I found at Trader Joe’s, except for the cloves):

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1/4 cup raw sugar

1 teaspoon ground cinnamon

1/2 teaspoon ground nutmeg

1/4 teaspoon ground cloves

dried cranberries to the top

 

Then it was assembly line time!

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A huge thanks to Jamielyn at www.iheartnaptime.net for her AWESOME PRINTABLE TAGS!

Some ribbon, some berries, the tags and Viola… It was time to share!

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About a week before Christmas, I hosted our neighborhood cookie exchange and made a batch of this Cranberry Apple Cider! It was really yummy! I added the above mix to a container of Trader Joe’s Spiced Cider and added a half a bag of fresh cranberries also. Yummy!

I hope you will enjoy this warm winter drink and bask in the the love family and friends and our Savior at this very special time of the year.

 

Merry Christmas to you all!

 

 

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Peanut Allergy Epidemic: Where did it Come from?

PeanutAllergyEpidemic-2-2

I am again beyond blessed to have another article published in Pittsburgh Parent Magazine!

This one is on a topic that I had not researched as in-depth, until I started working on this piece. Talk about a new rabbit hole that I fell down! This article summarizes some of what I found when I began to research the history of the Peanut Allergy Epidemic.

What do you think? Did you know ANY of this? Neither did I! So much more to learn.

 

Here is the PDF version:

p.8-9

Peanut Allergy Epidemic_ January 2016_8_9

P. 56

Peanut Allergy Epidemic_ January 2016

Or you can read the on-line version here on pg 8-9 and 56:

 

Pittsburgh Parent Magazine January 2016: Peanut Allergy Epidemic

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Top 5 #GivingTUESDAY Picks

2015-eat-sleep-give

In the past few years on this journey, I have learned a lot more about non-profits and how they use their money to benefit those they represent. I wish I could go back to my days when I wore rose colored glasses and believed that ALL non-profits benefitted ALL those in need, who they served. But sadly, I have learned that that designation is rare and can only be saved for a chosen few…

So in the spirit of #givingtuesday here are my picks for some creme of the crop, top notch non-profits who are serving those they say they serve, and doing it very well! If you are in the holiday spirit of giving and are not sure where to donate… please consider one or ALL of these!

1) TEAM TMR-        http://teamtmr.org/donate-now/

Team TMR is a 501c3 organization that provides help to families struggling with medical, emotional, educational and financial hardship due to complex medical needs faced by their children diagnosed with autism and other developmental disabilites.

Your donations will go towards:

  • Helping families living with autism and related disorders.
  • Funding our advocacy movements for people with autism to right to education, medical treatments and more.
  • Supporting effective action for autism recovery and related disorders.

Help comes via funds to defray costs for practitioner appointments, recommended treatments, travel expenses to the experts in the field, materials to start homeschool or purchase an AAC device that helps facilitate communication, expenses related to autism conferences and legal expenses as applicable.

2) Autism Is Medical- http://www.autismismedical.com

Autism Is Medical was founded to serve the growing medical and educational needs of the Autism Community.

The organization’s mission is to support a comprehensive interdisciplinary medical model focused on underlying pathophysiology, appropriate treatments, equal access to healthcare, and standards of care surrounding this medically complex patient population.

3) MitoAction- http://www.mitoaction.org

Our Mission

MitoAction’s mission is to improve quality of life for all who are affected by mitochondrial disorders through support, education and advocacy initiatives.

To do this, MitoAction’s goals include:

  • To improve quality of life for adults and children affected by mitochondrial disease.
  • To internationally raise awareness about mitochondrial disorders, and their relationship to other diseases.
  • To provide specific and practical materials that help patients to manage their symptoms
  • To aggregate and connect the international mitochondrial disease community
  • To engage pharmaceutical industry working toward therapeutic approaches to mitochondrial disorders.
  • To create tools which empower patients and caregivers to be advocates for themselves or their children.

4) Epidemic Answers- http://www.epidemicanswers.org

Vision

Our vision is to restore health and vibrancy to current and future generations.

Mission

Epidemic Answers is dedicated to reestablishing vibrant health in our children and ourselves through education, empowerment and prevention. Epidemic Answers inspires change by:

  • Illuminating the relationship between such prevalent childhood conditions as asthma, allergies, ADHD and autism to the underlying environmental stressors that negatively impact behavior, development and emotional wellbeing.
  • Connecting families to healing and prevention resources.
  • Empowering parents to partner with their healthcare professionals to optimize their family’s health.
  • Bringing awareness to the next generation of parents about the relationship between their environments and their future children’s health.

What We Do

Epidemic Answers offers a starting point for parents looking to understand why their children are chronically ill and what can be done to recover them.

We provide parent-oriented educational resources and networking tools that empower individuals to confidently embrace the healing journey for themselves and their families.

Documenting hope project- http://www.epidemicanswers.org/solutions/canary-kids/

 

5) Pennsylvania Elks Home Service Program- http://www.paelkshomeservice.org/index.php

what we do

Since 1963, the PA Elks Home Service Program has been helping to improve the quality of life for thousands of children and adults throughout Pennsylvania. We provide support and advocacy services to individuals of any age who have a developmental disability.

Last year, the Elks Home Service staff drove 251,858 miles and made 11,976 home service visits, helping families in every county in Pennsylvania.

Services are provided:

  • by a Nurse and/or Medical Care Coordinator
  • to Pennsylvania residents
  • in the person’s home environment
  • without discrimination
  • at NO CHARGE

Some ways the Elks Home Service Program can help:

  • Provide in-home medical care coordination services
  • Advocate for an individual’s legal and human rights
  • Provide information regarding resources and services available
  • Assess needs and help to access equipment
  • Advocate for appropriate educational services
  • Assist with finding activities within the community
  • Offer instruction regarding home care
  • Provide emotional support
  • Help with vocational goals
  • Assist with residential options
  • Provide referrals to appropriate agencies in the community
  • Interpret clinical findings and act as a liaison between health care providers
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Sunny Spot Radio Interview

Today, I had the wonderful opportunity to speak with Vickie the supplements manager at Sunnybridge Natural Foods on their radio show called the SunnySpot on this station.

We talked a bit about our journey with our daughter’s health, mitochodrial disease, autism and we even had a caller question regarding vaccines.

Here is an audio recording of the interview-

I can’t thank the ladies (Vickie and Gina) at Sunnybridge enough for having me on their show! They have an amazing store and I hope you will stop in to say hello and check out some of their amazing products (did I mention they have a GF bakery!!)

I hope I will get the opportunity to do something like that again! That was fun!

Some of the references/links that I mentioned during the call can be found here:

Mito TOXIC series of blog posts

Autism article in Pittsburgh Parent Magazine

Ask 8 before you vaccinate

V is for Vaccine – information about the Hannah Poling Case, autism and mitochondrial disease

Glutamates

Salicylates

Oxalates

Vaccine Injury Compensation Program

Vaccine Injury Table 

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Much Ado about the Flu (shot)

flu shot display
It seems as if you can’t turn a corner without hearing about the flu, and more importantly the FLU SHOT and why you must get one!! At the grocery store, the pharmacy, the community center, your doctor’s office and now even the commercials, information about the flu (shot) is everywhere. But is it the whole story?

If you have been reading my blog for a while you will know that I am a passionate advocate for children’s health, I am NOT anti-vaccine, but I do believe there are some questions to be answered regarding vaccination and children and MUCH MORE research needs to be done to answer these questions. I believe information is power and that the more you know about ALL sides of a conversation, the better equipped you are to determine what YOUR position is (not what you are told your position SHOULD be)! And finally, I believe every healthcare decision for a child should be placed in the loving hands of their parents, because after all they know that child best and they must live with all the consequences (both good and bad) of that decision.

With all that said- here are 5 tidbits that I have learned along the way about the flu (shot), that have made me dig deeper and do my homework. I encourage everyone, young and old to do their OWN research also and not just accept that ALL medical interventions are 100% safe for you or your child, until you can confidently site ALL the risks and benefits and how your current medical status and medical family health history weigh into those risks/benefits… a big leap toward PERSONALIZED MEDICINE…when the Person getting the medicine makes a fully informed decision to do so!

Much Ado about the Flu- Top 5

1. The multi-dose flu shots contain a form of Mercury called Thimerosal. Thimerosal adversely impacts the function of your mitochondria (research here and here). Mercury in any form is considered a neurotoxin. Here is a listing of the flu shots for the 2015-2016 season showing the ones that contain  mercury. This FDA article/table explains why the ones with zero in the mercury column, may not actually mean “zero mercury contained”, but rather a “trace amount” (Trace=≤0.3 µg Hg/0.5mL dose). It is best to consult the package insert or call the manufacturer to be sure of the mercury content of any vaccine.

Recently, I was talking to a friend who was headed to the pediatrician’s office for her child’s flu shot. Her child has a history of developmental delays, so I was sharing with her a great question to call ahead and ask the clinic would be:

“Does the flu shot that my child will be receiving contain mercury or thimerosal?”

When she called to check, the reply was a bit shocking and concerning, as the person on the other end of the phone asked, “What insurance do you have?”

Now why would you and your child’s insurance status have anything to do with the type of flu shot you receive and the INGREDIENTS in that flu shot??    Hmmm….

 

2.  The Flu is seasonal and in my research about Vitamin D, I found out exactly why. Read more here but also consider this study that shows:

Vitamin D may be MORE effective than a flu shot, even at low dose supplementation.

Vitamin D3, even when taken in low daily dosages, has been found to slash your risk of developing the flu by 42%source

 

3. The FluMist version of the flu (nasal spray) is a LIVE ATTENUATED VIRUS (LAIV) vaccine. What does this mean? It means that if you or your child’s immune system is not in a TIP TOP 100% functioning state (i.e..immunocompromised in some way shape or form), then you may just be giving yourself the flu! Also this Live Virus vaccine SHEDS…which means it acts as the vaccination that keeps on giving (ie. vaccine viruses capable of infection and replication can be cultured from..vaccine recipients).

See the Package insert here:

FluMist Package Insert

FluMist Package Insert

http://www.ncbi.nlm.nih.gov/pubmed/18662737

 

4.  According to The National Vaccine Information Center:

“As of November 2013, there have been more than 93,000 reports of reactions, hospitalizations, injuries and deaths following influenza (flu) vaccinations made to the federal Vaccine Adverse Events Reporting System (VAERS), including 1,080 related deaths, 8,888 hospitalizations, 1,801 related disabilities and over 1,700 cases of GBS. In 2013 the Federal Advisory Commission on Childhood Vaccines (ACCV) voted to add GBS to the Vaccine Injury Table within the federal Vaccine Injury Compensation Program (VICP).”

A few years ago I did not know what VAERS (reporting system of CDC) and VICP (ie Vaccine Court) were or stood for… I quickly found out and I urge you to do the same if you have never heard of them.

This  short videos should help explain:

What is VICP?

What is VAERS?

Despite most claims being rejected, the government Vaccine Injury Compensation Program  (VICP) has paid over $3.1 billion to those killed or injured by vaccines.

The flu vaccine is the most compensated vaccine. Between 11/16/14 and 2/15/14 (a 3- month period), of 91 cases settled, 74 were for severe injury or death due to influenza vaccination.

http://www.nvic.org/vaccines-and-diseases/Influenza/Influenza-Vaccine-Package-Inserts.aspx

 

5. And finally for my Mitochondrial counterparts… The live virus vaccine called FluMist carries this post-marketing warning in its package insert

“Exacerbation of symptoms of

mitochondrial

encephalomyopathy

(Leigh Syndrome)”

FLUMIST® QUADRIVALENT

FLUMIST® QUADRIVALENT

 

So those just a few of the tidbits that I have come across in my journey to try to understand why so many people I know, including some of my own family members, have had adverse reactions to certain vaccinations including the flu shot.  Consumer beware, but more importantly, do your homework so you can make the best INFORMED decision for you and your family!

And don’t forget there are ways to NATURALLY boost your immune system during these cold months of winter!

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Lady A’s GF/CF/SF Low Salicylate Banana Bread

banana bread
Lady A’s Gluten Free/Casein Free/Soy Free, Low Salicylate~

Banana Bread

2 cups GF Flour (we like this brand)

1 teaspoon  baking soda

1/8 teaspoon himalayan sea salt

1/2 cup sunflower or safflower oil (low salicylate oils)

3/4 cup sugar

1/4 cup brown sugar

2 large eggs

3 bananas mashed (when our bananas go brown, we peel them and throw them in a container in our freezer and then get them out when it is time to make this recipe!)

1/2 teaspoon alcohol free vanilla

Instructions:

Heat oven to 325 F, lightly rub oil on small loaf pans and dust with GF flour

In a bowl, mix together GF flour, baking soda,and salt. In separate bowl combine oil, sugar and add to it eggs, mashed bananas and vanilla. Stir until well blended. Mix in the dry ingredients to this mixture.

Pour batter into small loaf pans and bake for 50-60 minutes or until cake tester (toothpick) is inserted in center and comes out clean. Cool and Enjoy! Freeze extra loaf to keep them from spoiling (the beauty of bread made with NO preservatives!!).

With the extra batter we make BANANA BREAD MUFFINS!!

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Hyperactivity: Is it “Just” the Sugar? Pittsburgh Parent Magazine October 2015

Honored and thrilled once again to have an article I wrote, published in the October issue of Pittsburgh Parent Magazine.

Sugar Sugar Sugar! Is it really the root off all Hyperactivity- evil? Read to find out more! And don’t forget about the DYES!

PDF File of Article here: Sugar Pittsburgh Parent October 2015

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