As my last post here noted, in 2016, I embarked on a new journey, a medical advocacy company focused on helping families with special needs children, EmpoweredAdvocacy.com.
I am excited to let you I just published my first e-book:
Top 10 Lab Tests For Your Child
If you know some one who is struggling with their child’s physical or mental health or if YOU are concerned about your child’s development or behavior, please consider purchasing this book and empowering yourself with the information you need to advocate for your child.
Today, April 1st, marks a new chapter in my life and in the life of this blog Babyfoodsteps. I appreciate you following me, reading my blog, commenting and encouraging me over the years.
What started as a place to “rest my thoughts” and research as I sought desperately for answers for my daughter’s health, grew into a babyfoodsteps community of friends and acquaintances all over the world.
Last year, I started an advocacy business to pay forward all I had learned along this journey. Today, I am taking that advocacy ONLINE and creating a VIRTUAL support and membership group where I will weekly share the latest research, explanations of tests, fresh advocacy ideas, tips on navigating the systems and more. I will host monthly Q&A’s for members where you can get your questions answered and I will also be available for additional one-on-one consultations.
This is an exciting next step for me and my family.
PS. I won’t be posting much, here, at babyfoodsteps, in the future. So if you would like to continue to follow my writing, thoughts and ideas, please consider joining me here or adding your email here to get updates!
I am so excited to write about this amazing research that is going on RIGHT HERE in PITTSBURGH, PA!
Last year, I had the distinct honor to meet a local pediatric surgeon who is doing some thought-provoking and fascinating MICROBIOME research at Children’s Hospital of Pittsburgh. If you have read my blog in the past you know that I am fascinated with the connection of the microbiome to other conditions such as Autism. And you also know from this blog the I have experienced first hand the amazing impact FOOD can have on HEALTH, specifically my own daughter’s improved health. I look forward to following this study and wait in anticipation of the (positive) results!
This study is currently recruiting subjects (Children ages 2-17) who are tube fed (G tube and any enterally fed child is eligible including children with GJ’s.) If your child falls into this category, I highly encourage you to read further. If not, please consider passing this along to someone whom you know whose child may benefit. (if you are interested, please leave a comment below, message us on our Facebook page, or use the Contact Us form with your contact info and we will connect you with the lead researcher for this study).
Three years ago I was asked to be part of an amazing project, a life changing experience. Three years ago I was asked to write about our family’s experience with our daughter’s health and her recovery to be included in the second book that the Thinking Mom’s Revolution was publishing. A few years prior, I had read the Thinking Mom’s first book:
Reading That first book was pivotal in our own family’s journey. It was through those 23 moms (and one dad) stories, that I found a part of each one (of their stories) was a part of OUR story. All the things we had been told were “rare” and “coincidences” were right there in chapter after chapter and story after story of perfect strangers… There is no way that was a coincidence! In reading that book I found hope. I knew I was not alone in this fight.
Fast forward to December 2013 when I was put into a Facebook group with perfect strangers to write a second TMR book, together, the book that would become the “sequel” to that first book (the one that made me feel like I was no longer alone in this fight to help my child get better). A year later our book was finished and released first at Autism One in 2014 and then on Amazon. Now two and a half years later, 1/17/17, we are re-releasing the NEW and Improved, updated hardcover edition of Evolution of a Revolution: Autism and the Path from Hope to Healing.
You may ask why I was part of an autism book when our daughter did not have an autism diagnosis. I truly believe we did not fall into the abyss of autism (or off the tightrope as I wrote about here) because of the mothers who walked this path before me (including those who shared their stories in the first TMR book). Because these women (and one dad) shared what had happened to their child, I was able to quickly recognize the similarities of the stories, begin to connect the dots to our story and seek out help for our daughter earlier than waiting for that “diagnosis” to be made. These women and other warrior mothers showed me that the underlying biochemical and medical issues my daughter was experiencing were the root causes of something called “autism” and that autism was medical. We were on the fast track to autism with a one-way ticket… until I heard about other moms stories and observations and actions and healing. It was the power in this knowledge (which was God led and directed!) that helped us stop “autism” dead in its tracks and turn the train we were on, around.
This journey has been life changing in many good and sometimes troubling ways. Being part of this book project was definately one of the many bright spots along the path. Those strangers that I was put into a Facebook group with a few years ago are no longer strangers, they are friends, fellow warrior moms, gals who get it and get me, and who are fighting the same fight each and every day: recovery of our own kids and preventing any other family having to go through what our families have endured. Our collective intention is to move mountains and we do that by helping one family, one child at a time.
Are you a thinking mom?
Join the revolution and pay it forward…
All the authors in this book have donated their time and their stories for this book. Proceeds from the sale of this book go to the non-profit TeamTMR for their health and wellness treatment grant program which covers expenses (not covered by insurance) for families recovering their children.
In the past few years our family has learned volumes of information about various biological processes in the body. One of those metabolic cycles has been the FOLATE cycle or in lay-man’s terms: how folate (and the folic acid we ingest in fortified foods) is converted into an active and useable chemical, folate, by the body and particularly the brain.
New research out of Arkansas Children’s Hospital this week shows that this nutrient (a B vitamin) is important to Autism and research out of Pittsburgh about a month ago shows this nutrient is ALSO crucial for depression (especially in teens).
Research from Western Psych and Pittsburgh Children’s Hospital: HERE
Now for a little run down on what these studies highlight-
FIRST AND FOREMOST both studies show that a condition that is defined as a mental illness by classification in the DSM-V (autism and depression), has biological and metabolic roots that when addressed can be successfully treated with significant improvements in the individual with the condition.
Both studies also use a form of the vitamin B-9 (folinic acid) which is biologically active and in a reduced form versus the oxidized (and less active) form found in many over the counter vitamin supplements and in fortified food (folic acid). Note the extra “in” in the FOLINIC form of the vitamin versus the FOLIC form of the vitamin, it may just be a 2 letter difference but it has a BIG impact on what this chemical does in the body.
The study from Arkansas looked at a group of 48 children with Autism Spectrum Disorder were randomized into 2 groups, one receiving high dose FOLINIC acid and the other receiving a placebo. Those who received the FOLINIC acid had improvements in verbal communication (as measured by a standardized instrument) which was categorized as a medium to large effect. Those who had the most significant improvements were found to be a sub-category of participants who had positive folate receptor alpha autoantibodies (FRAA) and lower glutathione redox ratio (GSH/GSSG), suggesting that those with more abnormal folate metabolism biomarkers were better responders to high dose FOLINIC acid treatment. You can read more about FRAA testing here.
The study from Pittsburgh showed a group of 33 patients with treatment-refractory depression (did not respond to multiple medications), upon Lumbar puncture (spinal tap) it was found that 21 (64%) of the participants had metabolic abnormalities in their cerebral spinal fluid (CSF) while NONE of the health comparison participants showed any metabolite abnormalities. Of those abnormalities, Cerebral FOLATE deficiency (abnormal analyze in CSF= 5-methyltetrahydrofolate (5-MTHF) was found in the largest group of patients (12 of them, or 36% of the study group). Upon treatment with FOLINIC acid in the 12 patients with CFD, 10 of them had improvements in both depression and suicide scores (of the other 2, one was non-adherent and one was lost to follow-up). It is intersting to note that 8 of the patients with CFD underwent genetic testing for MTHFR polymorphisms which were negative in all of them.
Both studies are incredibly exciting and ground breaking because they BOTH suggest that a mental diagnosis may be successfully treated with a specialized form of a VITAMIN. This gives HOPE to many families whose children and young adults are impacted by these conditions.
More research must be done to confirm these results and to also determine who is the best candidates for successful treatment, but I am thankful to both these researchers for the work they have done in this field to find root causes for conditions that are impacting families across this nation.
In full disclosures, Folinic acid treatment is something we have tried in the past on our journey. We did not see as positive of an outcome as these studies suggest, however; this negative response to folinic acid and also to other forms of active folate (L-methyl folate) have led us to other hypothesis as to why our daughter did not respond positively to active folates. If there are others out there whose child has had this experience, please contact us! We would love to compare notes. One theory we, along with a few researchers have, is that abnormal methionine metabolism and methionine deficiency may lead to an adverse response to active folate (including folinic acid). As we continue to search for answers, we are thankful for these researchers blazing the trail into this field of metabolic science.
I am a little late on posting this article that was feature in the Pittsburgh Parent Magazine in August 2016. Again, I am incredibly honored to be able to have the opportunity to share some of the Science behind parenthood that I have gathered over the last few years.
Yikes! Somehow I forgot to post this back in March when it came out in Pittsburgh Parent Magazine. Again, I am honored to have one of my articles accepted into this publication!
This week the FDA released some new information about a class of antibiotics called Fluoroquinolones which include the names such as:ciprofloxacin (Cipro), levofloxacin (Levaquin), moxifloxacin (Avelox), ofloxacin (Floxin), and gemifloxacin (Factive). (more info here, here, here and here), specifically:
“FDA is advising that the serious side effects associated with fluoroquinolone antibacterial drugs generally outweigh the benefits for patients with sinusitis, bronchitis, and uncomplicated urinary tract infections who have other treatment options. For patients with these conditions, fluoroquinolones should be reserved for those who do not have alternative treatment options.
An FDA safety review has shown that fluoroquinolones when used systemically (i.e. tablets, capsules, and injectable) are associated with disabling and potentially permanent serious side effects that can occur together. These side effects can involve the tendons, muscles, joints, nerves, and central nervous system.
As a result, FDA is requiring the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs to be updated to reflect this new safety information. FDA is continuing to investigate safety issues with fluoroquinolones and will update the public with additional information if it becomes available.”
This topic is deeply personal to me. A few years ago, three different women I knew, were having health issues around the same time. ALL those ladies went on to find out that they were having issues with a particular antibiotic they were being given for an issue unrelated to the major issues they were NOW having which were caused by the antibiotic. Being the curious chemist, or maybe the nosey nellie that I am, I soon discovered they were ALL on the same type of antibiotic. One, that I myself had taken before, a category of antibiotics called Fluoroquinolones. This grouping of antibiotics includes: Cipro (Ciprofloxin), Avelox (Moxifloxacin) , and Levaquin (Levofloxacin). Of course, not being able to just sit around and do NOTHING with this info… I dug a bit deeper into the research and, as usually happens when I do this- I was in utter shock with the truth I found there. This post is to share some of what I have found over the last few years with you…along with the recent news that the FDA now also has found similar concerns with this drug class.
The group of individuals who have suffered from the adverse effects of this pharmaceutical call themselves “FLOXIES” and you can learn more about their reactions and recoveries on a number of their blogs:
“Several possible mechanisms have been suggested for the toxic effects of fluoroquinolones on cartilage, including a deficiency of functionally available magnesium, inhibition of mitochondrial dehydrogenase and proteoglycan synthesis, altered DNA metabolism (through inhibition of DNA polymerase), tissue accumulation of fluoride, and increased ROS production in chondrocytes.”
“Part of the problem is that fluoroquinolones are often inappropriately prescribed. Instead of being reserved for use against serious, perhaps life-threatening bacterial infections like hospital-acquired pneumonia, these antibiotics are frequently prescribed for sinusitis, bronchitis, earaches and other ailments that may resolve on their own or can be treated with less potent drugs or nondrug remedies — or are caused by viruses, which are not susceptible to antibiotics.”
“In 2011, 23 million patients received prescriptions in the U.S. for Cipro and other fluoroquinolones, including 294,069 prescriptions dispensed at Defense Department facilities. From 2009 to 2012, a total of 1.2 million prescriptions for fluoroquinolones were distributed at military treatment facilities.”
“The statistics on adverse reactions to Cipro, Levaquin and others aren’t considered complete because of the way the FDA’s database is constructed; the FDA considers its system to reflect about 10 percent of the actual incidence. Even so, there have been 2,500 documented deaths resulting from the major quinolones and 45,000 cases of side effects.”
Just a few years ago, Jenne Wilcox was a happily married healthy first-grade teacher in Oroville, Calif., helping husband Rob raise his son Cole from a previous marriage.
But all that changed suddenly after she took a prescription drug called Levaquin to prevent infection following routine sinus surgery. Wilcox developed severe pain in her joints and muscles, and even when she stopped taking the medication, the symptoms grew worse, until she could no longer walk.
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:
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.
Taking Baby{food}Steps... 