What I learned about Newborn Screening at SACHDNC…

I learned…

1. that my fellow members of the Baby’s First Test Task Force are incredibly passionate about newborn screening and amazing individuals who are already doing things to help others in their communities. Click on their names to learn more about how amazing they are: Amanda Beard (Nebraska), Ruth Caruthers (West Virginia), Kee Chan, PhD (Massachusetts), Willa Doswell (Pennsylvania), Stacy Hines-Dowell (Tennessee), Mark Engman (District of Columbia), Julie Miller (Ohio), William C. Morris (Texas), Chantel H. Murray (Delaware) (who unfortunately, I did not get to meet in person!).

2. that the SACHDNC is the advisory committee to  Secretary of Health and Human Services Kathleen Sebelius. This advisory committee, among other things, is responsible for advising the secretary on which disorders should be added to the Recommended Uniform Screening Panel also known as RUSP.

3.  that room was filled with bright people, including (but certainly not limited to- a complete list of highly qualified committee members here):

Dr. Sara Copeland (designated Federal Official)

Dr. Joseph Bocchini (Chairperson of SACHDNC)

Dr. Don Bailey (Chairperson of Education and Training Sub-Committee)

Dr. Stephen McDonough 

Dr. Dietrich Matern

Andrea Williams

4. that the condition MPSI was approved to move to the evidence review phase of the process of being added (or not) to the recommended newborn screening panel (RUSP). I also learned that this condition can be very detrimental to a family, as I listened to the comments made a father of 3 MPSI children from Dallas Texas.

5. that the condition Pompe disease was approved to move to the evidence review phase of the process of being added (or not) to the recommended newborn screening panel(RUSP).  The first I had heard of this disease was from the movie Extraordinary Measures (starring Brendan Fraser and Harrison Ford).

6. that 2013 marks the 50th anniversary of NEWBORN SCREENING and that there are plans in the works to celebrate the event. The Center for Disease Control (CDC) and Association of Public Health Laboratories (APHL) are working together to spotlight this milestone.

7. that over 12,000 babies were identified for early treatment by New Born Screening in 2009

8. that when talking with new parents about Newborn Screening it is important to realize they may have never heard of it and it must be explained in simple terms with an action item attached… some ideas discussed were- Health Check up at BIRTH- make sure you ask for your baby’s results; you know/ask about your baby’s height and weight- do you know your baby’s NBS results?; Newborn Screening helps a Dr. see medical conditions before anyone else, giving you information that can help save your baby’s life.

9. that you never know who you are going to run into on the Super Shuttle at 2am… I had the pleasure of meeting Joyce Hooker, director of regional outreach, Mountain States Genetics Regional Collaborative.I had “met” Joyce on a conference call I took part in, but didn’t get the opportunity to meet her in person until we ended up on the same shuttle to the hotel where the meeting was taking place.  I also had the pleasure of meeting Jana Monaco, the first parent advocate to be on the SACHDNC. We had a nice chat and she is going to connect me with a few of her friends who have kiddos similar to Lady A.  Two other moms that I got the pleasure of meeting were Kristine Brite McCormick and Annamarie Saarinen who hae been instrumental (along with Ruth) in raising awareness about PULSE OX and CCHD, getting it added to the recommended panel and passing laws so that every baby is screened in their own states.

10. that medical foods including formula, low protein foods and vitamins are a considerable financial burden for many families dealing with metabolic disorders. Dr. Sue Berry gave an excellent overview of a study that examined these costs and hardships. It was insinuated that this was an issue that had to be addressed at the state level, regarding insurance coverage, etc. and was not an issue for the Secretary to address.

11. that nearly 50 years after the testing for PKU began… so much is still NOT KNOWN… including what the mechanism for neurotoxicity of phenylalanine is? (as was presented by Dr. Parisi from the NIH’s recent conference on it.)

12. that the Education and Training subcommittee suggested looking at other heritable disorders (outside those that are screened for at birth).  It is my hope and desire that this committee will seriously consider investigating and making biological diagnostic recommendations for AUTISM as the latest figures from the CDC place its incidence at 1 in 88 children (based on children born in 2000). This disorder has a much higher incidence than any of the current screened for disorders, even CHD (estimated at 1 in 100 children).  I am so passionate about this cause, as we were told by many doctors early on  that our daughter was possibly Autistic early in our journey.  I believe there are MANY, MANY unexplored connections between metabolic disorders (including mitochondrial disease) and Autism, that this committee could help to clarify.

13. that making a public comment is an amazing experience, creates a ton of butterflies in one’s stomach, but feels really worthwhile when perfect strangers tell you good job and that they appreciate your voice. Our task force presented this comment at the meeting (3 of us spoke: Bill Morris, me, and Ruth Caruthers, 3 minutes each) :

This comment is a GROUP COMMENT representing these 10 individuals on this task force, This comment does not reflect the official position of Genetic Alliance.

Closing the GAPS through Consumer Task Force Awareness…

Today we come together as the Baby’s First Test Consumer Task Force to ask the Secretary’s advisory committee for assistance.  We are all here today as concerned and invested consumers of the newborn screening process. Through our advocacy efforts we hope to close some Gaps that we feel as parents, must be addressed in order to adequately help each and every child affected by heritable disorders to have a long, healthy and productive life. We would like to commend and applaud the committee for the huge strides it has made in adding screenings to the recommended panel and bringing uniformity and awareness to the ever expanding field of detectable and treatable heritable disorders in children.

The GAPS we would like to focus our advocacy efforts on ARE: 1) What screenings are available/recommended and what is actually tested for in each state

2) Awareness at a primary care/pediatric care level so that warning symptoms may be caught, preliminary testing can begin and referrals can be made and as early as possible (for those disorders not currently being screened for and/or for later onset of those disorders that are screened for).

3) Communication and education with both the healthcare providers and the public about newborn screening

4) Being told your child has a positive newborn screen and what the treatment protocol/options/ testing should be

5) Standards of care and best practices that make a newborn screening system practical and effective for those with heritable disorders

1)  Our hope to close the Gap between what screenings are available/recommended by this committee and what is actually tested for in each state, is one that tops the list. We are asking the committee to further encourage the states to implement screening for all Recommended Uniform Screening Panel and secondary conditions by 2015. For task force member William Morris, son of 2 sons with genetic disorders, PKU and Krabbe Disease, the lack of any general understanding about newborn screening by parents is tragic at best, dangerous at worst. For instance, William points out that everyone knows that children are receiving immunizations to protect them from disease, but not many realize the role that screening plays in diagnosing disorders and focusing treatments for an ever-expanding number of rare disorders, many that are controlled with case specific intervention if started in a specific window. We are parents working at our state levels to get these panels implemented, but we need assistance from this committee to have a greater impact on awareness and ACTION of getting EVERY CHILD in EVERY STATE screened for ALL 57 DISORDERS. There are already so many factors that a affect the health of a child, which state you are born in should not be one of them.

2) Through Awareness, we hope to close the Gap between metabolic/genetic/newborn screening awareness at a primary care/pediatric care level so that warning symptoms may be caught, preliminary testing can begin and referrals can be made and as early as possible (especially for those disorders not currently being screened for and/or for later onset of those disorders that are screened for). It is our hope that this committee will provide further training and information to pediatricians (through APA) and PCP’s so that these disorders are not misdiagnosed as autism, bipolar disorder, speech delay, failure to thrive, developmental delay, mental retardation, cerebral palsy, epilepsy, reflux or colic, by practitioners who may not know to screen for metabolic disorders, beyond newborn screening at birth. Task force member, Kristi Wees, has experienced this gap first hand with her 3 year old daughter who is suspected of having a mitochondrial disorder with symptoms starting at 2 weeks of age. After nearly 3 years of testing and seeing 14 doctors/specialists, they still do not have confirmation or a treatment plan. Metabolic testing was not even considered by medical professionals until nearly a year and a half of escalating symptoms.

3) A study published in the American Journal of Obstetrics and Gynecology in May of 2005 showed that there are also gaps in communication and education with both the healthcare providers and the public about newborn screening. Therefore we believe that closing the educational gap amongst healthcare providers, making education for parents more consistent when there is a result (positive or negative) and exploring how to ensure more accountability to the state health department that each family is being educated about newborn screening, resources available, etc. during the prenatal period is essential. Consumer Task Force Member, Chantel Murray remembers when her son was diagnosed with Cystic Fibrosis based off of an inconclusive newborn screening test. Although she went to a high risk obstetrician for prenatal care and was a neonatal nurse herself she never received any education or information on newborn screening and found that she and her husband had a lot of questions about the results not knowing who to turn to for answers and help.

4) To echo, Ms. Murray concerns, Consumer Task force member Amanda Beard feels that the biggest gap with the current NBS system is that the  follow-up care on the screening tests is disorganized/inconsistent or in some cases non-existent. The lack of education provided to the people that work with the  parents, and to the parents themselves, is very detrimental to the child’s outcome. We acknowledge that there are professionals that have the desired education, but unfortunately those people are in the minority.  The lack of strict standard protocol awareness can significantly delay diagnosis and close windows of opportunity to get vital information about the child’s disorder, as well. Mrs. Beard, experienced this first hand with her son, Wyatt, failing his NBS hearing test. His case was treated as if his abnormal test result was actually normal, because the screening gives so many false positives. They went for months, not knowing if he was or wasn’t hearing impaired…  just sat in limbo. Now Wyatt is facing delays in speech and communication that can lead to behavior issues and learning delays.  Amanda has found through connections with Early Hearing Detection and Intervention, that the results of the Newborn Screening hearing test are routinely not valued to be reliable or urgent by the professionals and parents are desperately seeking information and support in the time period that they are being forced to endure.  It is her hope, that the committee will acknowledge this need and fill in the informational gap with regulated, mandatory, education for all providers of newborn screening. This will allow them to perform the screening and give recommendations for follow-up more effectively, along with providing more consistent support to the parents.

5) It’s amazing how far we’ve come in expanding newborn screening across the country, and this committee deserves a lot of credit for setting out national recommendations. Task force member Mark Engeman, believes it is also important for the Committee to explore standards and best practices that make a newborn screening system practical and effective. Mark’s son was born with Congenital Adrenal Hyperplasia (CAH), here in the District of Columbia, before DC screened for that disorder.  He survived long enough to be diagnosed and put on medication, and he is a thriving teenager.  If he has a serous illness or accident, he requires an emergency injection of hydrocortisone, or he would go into shock and likely die.  However, if Mark wasn’t there, and an ambulance came to take him to the hospital, the paramedics would not have the knowledge, authorization, or medication to give him the shot that could save his life.

As private citizens, parents and members of this task force, we will work with our local decision-makers to make changes and spread awareness in the coming year.  We hope that this committee would also look more closely at other elements of the newborn screening system, beyond the screens themselves, and assist us in CLOSING THE GAPS for future generations to come, so we can all continue to CONNECT THE DOTS, one blood spot at a time!

14. that this is the real reason we were at this meeting, and the real reason any of us are advocating for newborn screening: to save one baby at a time…one blood spot at a time, one newborn screening at a time, because PRIME TIME IS NOW…for our children. In memory and honor of Corbin, Grayson, and Claire (and all the other little one’s who are now in heaven), we do this for YOU and all your little friends to come.

MTHFR, Folic Acid, and Mitochondrial Disease… is there a link?

We are all about Acronyms these days here at Babyfoodsteps! So I am sure you are wondering what the heck this one stands for… MTHFR … believe me it is much easier to say MTHFR than the “Methylenetetrahydrofolate reductase” that it stands for!

NO! NO! NO! you say… not another biochemistry lesson.  In the interest of time and sleep deprivation (Lady A has not slept much in the last month and a half, once we figure out why not, I will be sure to share what we learn, but in the meantime we are all just trying to sleep when we can)… here is the SHORT version of why MTHFR may be important to many more of us, but specifically those in the MITO and AUTISM communities.

MTHFR is an enzyme and a gene (of the same name). This enzyme (and gene) are responsible for

converting 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate. This reaction is required for the multistep process that converts the amino acid homocysteine to another amino acid, methionine

Here is what that looks like visually see the light baby blue box in the middle of the diagram below with the letters MTHFR. Now look to the left…see the black circle labled KREBS CYCLE (also known as the Citric Acid Cycle)?? Guess what …this is the entry into “MITO LAND”…by which OXPHOS and electron transport chain is fueled.. soo if you have an issue with your MTHFR gene, and for that matter any other gene (all the other colored boxes in the diagram) in your methylation cycle… could it have an effect down-stream on your mitochondria?? YOU BETCHA! Folate conversion also affects Glutathione {G} production (you can read this post for more info on why {G} is so important), it had been shown that mitochondrial patients (and autistic children) are low in {G}, meaning that their ability to detoxify certain environmental stressors (such as chemicals, food additives, bacteria and medications) is low, meaning that these stressors can cause more damage the longer they hang around inside the body and the cell- esp. to your mitochondria. SO LOW FOLATE= LOW {G} PRODUCTION= LOW DETOXIFICATION=HIGHER TOXIC LOAD= MORE MITOCHONDRIAL DAMAGE  (you can see how this can start a cycle that can be destructive)

In a nutshell if you have one or more of the MTHFR polymorphisms (or Gene changes: 677T and 1298C are 2 of the most studied and most common mutations) then you are not processing FOLATE correctly in your body. FOLATE is crucial for your body to function and converting homocysteine to metathione is crucial because high levels of homocysteine can build up and have been implicated in HEART DISEASE.  Processing FOLATE is also VERY cruical during pregnancy as it is needed for a baby’s development, particularly when the spinal column (neural tube) is formed. inability to process FOLATE (or folic acid) or low levels of FOLATE in a mother’s diet can result in birth defects called neural tube defects such as spinabifada. So individuals who have any family history of HEART DISEASE, PREGNANCY LOSS/MISCARRIAGE, OR SPINABIFADA…may want to “dig further” into their genetics and family medical history to see if MTHFR may be at the root of the issue.

ONE BIG CLARIFICATION-

FOLIC ACID is not the same thing as FOLATE!! Folic Acid (also called pteroylmonoglutamic acid) is SYNTHETIC and not found in nature… if you have the MTHFR mutation you cannot efficiently process and “methylate” folic acid to a useable form that your body can use (5MTHF)…. therefore you could take all the pre-natal (folic acid fortified) vitamins or multivitamins in the world…. but if your body cannot process/convert them correctly then your HEALTH is gaining LITTLE to NO benefit from them! So just adding more FOLIC acid (from fortified processed enriched foods) to your diet is NOT the cure… getting FOLATE in its natural form from foods(dark leafy greens, citrus, legumes, etc.) and supplementing the rest with a BIO ACTIVE form of FOLATE is HELPFUL.

If you would like an amazing over view of ALL the things that a defective MTHFR gene can cause, listen here to Dr. Ben Lynch of  www.mthfr.net and see for yourself the implications:

And if you are a VISUAL person, like I am, you will love these MIND MAPS that summarize MTHFR, HEALTH PROBLEMS HERE and MTHFR OVERVIEW HERE

AUTISM and MTHFR- is it because of the FOLIC ACID FORTIFIED foods?

A GREAT summary of FOLATE, AUTISM and MITO Research (including Cerebral Folate Autoantibody research)

An organization which is supporting CEREBRAL FOLATE Research.

MY HYPOTHESIS-

So..could it be this be another reason why some mito patients and autistic children improve when placed on a Gluten Free and Casein Free diet… because 1) Nearly all GLUTEN containing products in the USA are FORTIFIED with Folic Acid which individuals with MTHFR defects cannot process efficiently and 2) Because Milk products (containing Casein) have been shown to up regulate folate receptor autoimmunity (in plain English- milk can be BAD for you if you have issues with processing folate or have an autoimmunity to folate.)  So by removing these 2 from the diet, it takes “stressors and blockers” off the folate cycle and allows more FOLATE to be processed correctly which is crucial for neurological development.  So in other words… is FOLIC ACID as artificial and harmful to some people’s bodies as Red.40, Aspartame, or MSG? Will we soon see labels that say NO Artificial Folic Acid,  or GREAT FOR HEART HEALTH- CONTAINS REAL FOLATE ?  Maybe, Maybe not?

Here is a journal article that discusses why folic acid fortification may not benefit everyone.

So how do you know if you have an MTHFR Mutation??

Quest Diagnostics has this lab test available that your pediatrician or general Practitioner could order HERE.

Also Spectracell Labs has it available (I have heard for $150 out of pocket through some providers) HERE.

And here is an overview of OTHER LAB TESTING that can be done to access your MTHFR  health status HERE.

HERE is one insurance companies overview of research associated with Homocysteine testing and MTHFR mutations.

The only TRUE way to diagnose CEREBRAL FOLATE DEFICIENCY is through a spinal tap/lumbar puncture, which may be suggested in certain clinical circumstances like this one.

Ok so that was not so SHORT… but I will stop for now and continue once I have more 3 hours of sleep under my belt!

What is the SACHDNC? And why BabyFoodSteps is off to Alexandria VA!

S-A-C-H-D-N-C

that is an acronym that is more than a mouthful! It stands for:

Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children

(which is a mouthful also!) So what is it and why am I writing about it today?

This is a federal advisory committee which was formed and chartered in 2003 to

 advise the Secretary regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders.

This 10 member panel of doctors, public health officials and designated federal official hold advisory meetings a few times a year.

On May 17-18,2012 the 27th meeting of SACHDNC will be held in Alexandria Virginia… and Babyfoodsteps is thrilled to be going to experience this meeting first hand as part of a grant for www.BabysFirstTest.org Consumer Task Force. At this meeting we will be participating along with other task force members, as part of the “Public Comment” section of the meeting. This is an opportunity for community organization, groups, and even individuals to voice their opinions, comments and suggestions to the Advisory Committee. If you have  comment you would like to make about newborn screening you can make that in-person or submit a written comment per these instructions here. I encourage you to submitt a comment if you have any questions, compliments or suggestions for improvements realated to newborn screening or heritable disorders in children, and LET YOUR VOICE BE HEARD. Change does not come from sitting on the sidelines and cheering (or complaining about the coaching!)… BE the CHANGE you want to SEE!

Here are a few examples of Parent submitted Public comments from the FIRST meeting of SACHDNC in 2004:

Jill Fisch Comment

Micki Gartzke Comment

Terri Broadstreet Comment

As I read all these comments, I can feel each of these mother’s pain, frustration and passion as they voice their concerns in hopes that another child does not have to suffer through what they have witnessed their child suffer through.  I can feel all this because I share their pain, frustration and passion, walking the journey we have with mitochondrial disease diagnosis with our daughter, Lady A.   In a week, I will head to the SACHDNC in hopes of learning more about how I can help advocate and educate for newborn screening, with a passion and a hope that other parents will be able to walk a much smoother path with their little ones, in the future, one BABY STEP at a time.

MITOXIC-Why Aspartame may not be good for any of us, especially Mitochondrial Disease patients

I have never liked diet drinks. Never, ever. The taste of artificial sweetener makes me sick to my stomach.
When we gave up artificial colors and flavors at our house, though, the artificial sweetener also went in the trash (in the hidden sources we discovered).  I didn’t think much about it until the other day an on-line friend posted that her daughter (who is suspected of mito) was having severe behavioral changes to a reflux medicine that my daughter had been on (Prevacid). A few of the other moms online suggested it may be the fillers or sweeteners rather than the actual medicine itself. Which is the conclusion we had come to (thinking it was the soy derived flavoring and dye in the Prevacid) when Lady A was around 10 month old. Lo and behold my friend did some research of her own and began to suspect Aspartame as the culprit to her daughters severe personality and behavioral changes.
She posted this LINK to the research she had found on the internet.

What is Aspartame:

Some notes from Wikipedia:

Metabolism and phenylketonuria

Upon ingestion, aspartame breaks down into natural residual components, including aspartic acid, phenylalanine, methanol,^[25] and further breakdown products including formaldehyde^[26] and formic acid, accumulation of the latter being suspected as the major cause of injury in methanol poisoning. Human studies show that formic acid is excreted faster than it is formed after ingestion of aspartate. In some fruit juices, higher concentrations of methanol can be found than the amount produced from aspartame in beverages.^[13]

High levels of the naturally-occurring essential amino acid phenylalanine are a health hazard to those born with phenylketonuria (PKU), a rare inherited disease that prevents phenylalanine from being properly metabolized. Since individuals with PKU must consider aspartame as an additional source of phenylalanine, foods containing aspartame sold in the United States must state “Phenylketonurics: Contains Phenylalanine” on their product labels.^[27]

In the UK, foods that contain aspartame are legally required by the country’s Food Standards Agency to list the chemical among the product’s ingredients and carry the warning “Contains a source of phenylalanine” – this is usually at the foot of the list of ingredients. Manufacturers are also required to print ‘”with sweetener(s)” on the label close to the main product name’ on foods that contain “sweeteners such as aspartame” or “with sugar and sweetener(s)” on “foods that contain both sugar and sweetener”.^[28]

Under the trade names Equal, NutraSweet, and Canderel, aspartame is an ingredient in approximately 6,000 consumer foods and beverages sold worldwide, including (but not limited to) diet sodas and other soft drinks, instant breakfasts, breath mints, cereals, sugar-free chewing gum, cocoa mixes, frozen desserts, gelatin desserts, juices, laxatives, chewable vitamin supplements, milk drinks, pharmaceutical drugs and supplements, shake mixes, tabletop sweeteners, teas, instant coffees, topping mixes, wine coolers and yogurt.

As I read it, I was reminded of all the information I had read I the last 3 years about the dangers of aspartame not to mention aspartame’s direct negative effect on individuals with another metabolic disorder I have been learning more and more about recently: PKU.  In addition, I was reminded of a book called Excitotoxins: The Taste That Kills. It is a fairly technical read and while I have not read it cover to cover, I have skimmed it – and the main point of the doctor who wrote it is: Aspartame (and MSG) disrupt brain chemistry in harmful ways. Here is the cliff notes version of the book on video (my favorite way to “read”):

Aspartame is WIDESPREAD in our society, here is a LIST of products where Aspartame can be found.

Aspartame Consumer Safety Network  which includes a PILOT HOTLINE… why a hotline for pilots and aspartame  you may ask? … read this.  Why may pilots be more affected by Aspartame? Here is one possible theory.

What happens when you combine 2 Mitotoxic substances: Aspartame Plus Artificial Colors

Inhibition of neurite (neuron) outgrowth was found at concentrations of additives theoretically achievable in plasma by ingestion of a typical snack and drink. In addition, Trypan Blue dye exclusion was used to evaluate the cellular toxicity of food additives on cell viability of NB2a cells; both combinations had a straightforward additive effect on cytotoxicity (toxicity to cells).

To see a photo this toxic effect on Neurons (with MSG in photo, but experiment also done with Aspartame) scroll to the 6th bullet point picture..

LAYMAN and LAYWOMEN’s VERSION

So… why should those with mito beware (as well as the rest of us?)…here is the 2 minute Non- technical version:

From My last Mitotoxic post about Acetaminophen you may remember the chemical Glutathione {G}. This chemical is one of the major detoxifying chemicals in your body. As I have mentioned before,  It has been shown that children with autism and those withmitochondrial disease have lower levels of {G} to begin with. In the scientific articles below, research points to the fact that Aspartame disrupts the antioxidant status of the brain… SPECIFICALLY the Glutathione {G} dependant system. So if you are low to begin with in {G} and then you consume Aspartame, you reduce this crucial antioxidant even further..in a place where you really don’t want to have oxidative stress or damage YOUR BRAIN!  (Oxidative stress is caused by an imbalance between the production of reactive oxygen and a biological system’s ability to readily detoxify the reactive intermediates or easily repair the resulting damage.)  So do you know what your Glutathione {G} levels are? Probably not, unless you have had them specifically tested and sought out a test for {G}, because this is not a routine blood test that your doctor will order for your yearly physical…. but maybe it should be?? Here is an option to ask your doctor about at your next visit:  Spectracell Micronutrient Panel

In addition to disrupting {G} levels, and lowering your ability to detoxify, many of the the chemicals that Aspartame breaks down to in your body can be very TOXIC…including methanol (causes blindness when ingested), formaldehyde (chemical used to preserve deceased bodies), formic acid (occurrs naturally in bee sting venom), phenylalanine (amino acid, can be toxic to those who cannot break it down- like those with PKU) and aspartic acid (amino acid).  The levels of these chemicals may build up and cause more damage in your body if you are not able to rid (or detoxify) yourself from them.

Just a little Drink for THOUGHT…the next time you reach for the Diet Cola or hand your child a glass of Crystal Lite… which are filled with this neuron altering chemical called ASPARTAME (deemed “safe” by the FDA)

Here is just some of  THE SCIENCE

Aspartame and glutathione

Long-term consumption of aspartame and brain antioxidant defense status.

Abstract

The present study investigated the effect of long-term intake of aspartame, a widely used artificial sweetener, on antioxidant defense status in the rat brain. Male Wistar rats weighing 150-175 g were randomly divided into three groups as follows: The first group was given aspartame at a dose of 500 mg/kg body weight (b.w.); the second group was given aspartame at dose of 1,000 mg/kg b.w., respectively, in a total volume of 3 mL of water; and the control rats received 3 mL of distilled water. Oral intubations were done in the morning, daily for 180 days. The concentration of reduced glutathione (GSH) and the activity of glutathione reductase (GR) were significantly reduced in the brain of rats that had received the dose of 1,000 mg/kg b.w. of aspartame, whereas only a significant reduction in GSH concentration was observed in the 500-mg/kg b.w. aspartame-treated group. Histopathological examination revealed mild vascular congestion in the 1,000 mg/kg b.w. group of aspartame-treated rats. The results of this experiment indicate that long-term consumption of aspartame leads to an imbalance in the antioxidant/pro-oxidant status in the brain, mainly through the mechanism involving the glutathione-dependent system.

Aspartame and Glutathione #2

The effect of L-cysteine and glutathione on inhibition of Na+, K+-ATPase activity by aspartamemetabolites in human erythrocyte membrane.

BACKGROUND:

Reports have implicated Aspartame (N-L-a-aspartyl-L-phenylalanine methyl ester, ASP) in neurological problems.

RESULTS:

Membrane Mg(2+)-ATPase activity was not altered. The sum of ASP metabolite concentrations corresponding to 34, 150 or 200 mg/kg of the sweetener ingestion resulted in an inhibition of the membrane Na(+), K(+)-ATPase by -30, -40, -48%, respectively. MeOH concentrations of 0.14, 0.60 or 0.80 mM decreased the enzyme activity by -25, -38, -43%, respectively. Asp concentrations of 2.80, 7.60 or 10.0 mM inhibited membrane Na(+), K(+)-ATPase by -26, -40, -46%, respectively. Phe concentrations of 0.14, 0.35 or 0.50 mM reduced the enzyme activity by -24, -44, -48%, respectively. Preincubation with L-cysteine or reduced glutathione (GSH) completely or partially restored the inhibited membrane Na(+), K(+)-ATPase activity by high or toxic ASP metabolite concentrations.

CONCLUSIONS:

Low concentrations of ASP metabolites had no effect on Na(+), K(+)-ATPase activity. High or abuse concentrations of ASP hydrolysis products significantly decreased the membrane enzyme activity, which was completely or partially prevented by L-cysteine or reduced GSH.

Methanol and Aspartame

Methanol: a chemical Trojan horse as the root of the inscrutable U.

Abstract

Until 200 years ago, methanol was an extremely rare component of the human diet and is still rarely consumed in contemporary hunter and gatherer cultures. With the invention of canning in the 1800s, canned and bottled fruits and vegetables, whose methanol content greatly exceeds that of their fresh counterparts, became far more prevalent. The recent dietary introduction of aspartame, an artificial sweetener 11% methanol by weight, has also greatly increased methanol consumption. Moreover, methanol is a major component of cigarette smoke, known to be a causative agent of many diseases of civilization (DOC). Conversion to formaldehyde in organs other than the liver is the principal means by which methanol may cause disease. The known sites of class I alcohol dehydrogenase (ADH I), the only human enzyme capable of metabolizing methanol to formaldehyde, correspond to the sites of origin for many DOC. Variability in sensitivity to exogenous methanol consumption may be accounted for in part by the presence of aldehyde dehydrogenase sufficient to reduce the toxic effect of formaldehyde production in tissue through its conversion to the much less toxic formic acid. The consumption of small amounts of ethanol, which acts as a competitive inhibitor of methanol’s conversion to formaldehyde by ADH I, may afford some individuals protection from DOC.

Can Aspartame trigger a metabolic crisis in a child?

Metabolic acidosis mimicking diabetic ketoacidosis after use of calorie-free mineral water.

Abstract

A previously healthy boy was admitted with fever, tachycardia, dyspnea, and was vomiting. A blood test showed a severe metabolic acidosis with pH 7.08 and an anion gap of 36 mmol/L. His urine had an odor of acetone. The serum glucose was 5.6 mmol/L, and no glucosuria was found. Diabetic ketoacidosis could therefore be eliminated. Lactate level was normal. Tests for the most common metabolic diseases were negative. Because of herpes stomatitis, the boy had lost appetite and only been drinking Diet Coke and water the last days. Diet Coke or Coca-Cola Light is sweetened with a blend containing cyclamates, aspartame, and acesulfame potassium, all free of calories. The etiology of the metabolic acidosis appeared to be a catabolic situation exaggerated by fasting with no intake of calories. The elevated anion gap was due to a severe starvation ketoacidosis, mimicking a diabetic ketoacidosis. Pediatricians should recommend carbohydrate/calorie-containing fluids for rehydration of children with acute fever, diarrhea, or illness.

 Aspartame and Seizures

Aspartame exacerbates EEG spike-wave discharge in children with generalized absence epilepsy: a double-blind controlled study.

Abstract

There are anecdotal reports of increased seizures in humans after ingestion of aspartame. We studied 10 children with newly diagnosed but untreated generalized absence seizures. Ambulatory cassette recording of EEG allowed quantification of numbers and length of spike-wave discharges in a double-blind study on two consecutive days. On one day the children received 40 mg/kg aspartame and on the other day, a sucrose-sweetened drink. Baseline EEG was the same before aspartame and sucrose. Following aspartame compared with sucrose, the number of spike-wave discharges per hour and mean length of spike-wave discharges increased but not to a statistically significant degree. However, the total duration of spike-wave discharge per hour was significantly increased after aspartame (p = 0.028), with a 40% +/- 17% (SEM) increase in the number of seconds per hour of EEG recording that the children spent in spike-wave discharge. Aspartame appears to exacerbate the amount of EEG spike wave in children with absence seizures. Further studies are needed to establish if this effect occurs at lower doses and in other seizure types.

Formic Acid, Methanol and Mitochondrial

Acquired mitochondrial impairment as a cause of optic nerve disease.

Abstract

BACKGROUND:

Blindness from an optic neuropathy recently occurred as an epidemic affecting 50,000 patients in Cuba (CEON) and had clinical features reminiscent of both tobacco-alcohol amblyopia (TAA) and Leber’s hereditary optic neuropathy (Leber’s; LHON). Selective damage to the papillomacular bundle was characteristic, and many patients also developed a peripheral neuropathy. Identified risk factors included vitamin deficiencies as well as exposure to methanol and cyanide. In all 3 syndromes, there is evidence that singular or combined insults to mitochondrial oxidative phosphorylation are associated with a clinically characteristic optic neuropathy.

PURPOSE:

First, to test the hypothesis that a common pathophysiologic mechanism involving impairment of mitochondria function and, consequently, axonal transport underlies both genetic optic nerve diseases such as Leber’s and acquired toxic and nutritional deficiency optic neuropathies. According to this hypothesis, ATP depletion below a certain threshold leads to a blockage of orthograde axonal transport of mitochondria, which, in turn, leads to total ATP depletion and subsequent cell death. Second, to address several related questions, including (1) How does impaired energy production lead to optic neuropathy, particularly since it seems to relatively spare other metabolically active tissues, such as liver and heart? (2) Within the nervous system, why is the optic nerve, and most particularly the papillomacular bundle, so highly sensitive? Although there have been previous publications on the clinical features of the Cuban epidemic of blindness, the present hypothesis and the subsequent questions have not been previously addressed.

METHODS:

Patients in Cuba with epidemic optic neuropathy were personally evaluated through a comprehensive neuro-ophthalmologic examination. In addition, serum, lymphocytes for DNA analysis, cerebrospinal fluid (CSF), sural nerves, and eyes with attached optic nerves were obtained from Cuban patients, as well as from Leber’s patients, for study. Finally, we developed an animal model to match the low serum folic acid and high serum formate levels found in the CEON patients, by administering to rats low doses of methanol after several months of a folic acid-deficient diet. Optic nerves and other tissues obtained from these rats were analyzed and compared with those from the Cuban patients.

RESULTS:

Patients from the Cuban epidemic of optic neuropathy with clinical evidence of a selective loss of the papillomacular bundle did much better once their nutritional status was corrected and exposure to toxins ceased. Patients with CEON often demonstrated low levels of folic acid and high levels of formate in their blood. Histopathologic studies demonstrated losses of the longest fibers (in the sural nerve) and those of smallest caliber (papillomacular bundle) in the optic nerve, with intra-axonal accumulations just anterior to the lamina cribrosa. Our animal model duplicated the serologic changes (low folic acid, high formate) as well as these histopathologic changes. Furthermore, ultrastructural examination of rat tissues demonstrated mitochondrial changes that further matched those seen on ultrastructural examination of tissues from patients with Leber’s.

CONCLUSION:

Mitochondria can be impaired either genetically (as in Leber’s) or through acquired insults (such as nutritional or toxic factors). Either may challenge energy production in all cells of the body. While this challenge may be met through certain compensatory mechanisms (such as in the size, shape, or number of the mitochondria), there exists in neurons a threshold which, once passed, leads to catastrophic changes. This threshold may be that point at which mitochondrial derangement leads to such ATP depletion that axonal transport is compromised, and decreased mitochondrial transport results in even further ATP depletion. Neurons are singularly dependent on the axonal transport of mitochondria.

Walking the Autism Tight Rope

After a conversation with a friend at the gym this week, I realized that all my “AUTISM AWARE” posts (summarized below) I have been making lately on my facebook page (in honor of Autism Awareness Month of April) may have led people who aren’t close friends or aren’t friends we see often, to assume my daughter, Lady A, is Autistic.
Quite the contrary, Lady A, does not currently have an autism diagnosis or a PDD-NOS or an Asperger’s diagnosis. So why (I am sure many of you are thinking) do I care, or post, or write about AUTISM, as if I were the caregiver of an Autistic Child, even though I am not?

Why?  

Because from very early on in this journey of trying to figure out why Lady A was so irritable, and colicky and fussy as a newborn, many a doctor, beginning around the 15 month age, began bringing up the A-word. “Maybe it is Autism” they would say, and then Lady A would make eye contact with them and they would dismiss it, saying, “No, she just looked me in the eye, it can’t be Autism” (as if lack of eye contact is the only SYMPTOM of an Autistic child). Others would say, “Maybe it is Autism” and then realize she was only a hair over a year old and quickly rebut, “Oh, but she is too young to tell, we will just have to wait a while to see, because you can’t tell this early.”(as if children “grow” into Autism and there are no other signs or symptoms) In those early days, I am embarrassed to say I knew VERY little about what Autism was. I had a couple of friends with Autistic Children, but did not know much beyond the label and what they shared with me about their experience.

Why?

Because on certain of her “bad” days, at certain times of day, in certain situations, our daughter can exhibit “autistic like” behaviour including: temper tantrums, flapping arms, blank stares,  head banging,  shrill screaming, repetitive speech, nonsense words and speech, fleeing, etc.  It was not until I began researching metabolic disorders, and specifically mitochondrial disease, around when she was 19months old (when it was first suspected by the first neurologist we saw), that I realized WHY some doctors suggested it and WHY we were seeing some of the behaviours we were seeing.  While at 3 years old, she does not have an autism diagnosis, she is suspected of having a metabolic disorder called mitochondrial disease, in which there is an ever growing relationship and body of research showing the association of Mito (OXPHOS) as an underlying cause of AUTISM or “autistic like symptoms”.

Does she have AUTISM today? NO, not diagnosed by a professional. BUT- Do we walk a fine line, a tight rope of sorts, every single day, teetering on the edge of this great abyss: YES.  We have been here many times before, where we fell, as she regresses and we struggled to figure out where her babbling or words went. Or when we fell and she screamed in pain with chronic burning diarrhea.  Or when we fell and she banged her head on the tile floor (all while we tried to restrain her flailing, tantruming little body) for a week after drinking cows milk.  We have fallen and thankfully along with Lady A, gotten back on this tight rope and continued our journey.  But each day we navigate a series of obstacles high above the ground, teetering on that little rope: obstacles in the form of food, to errands we run (dry cleaner), to household chemicals, to staying outside and playing too long in the heat, to not eating soon enough, to not eating enough, to all the other variables and stressors on her body on a daily basis, MANY that are out of our control. So we navigate the obstacles we can and let the ones we can’t control up to lots of hope and prayer.  There is not really a day that goes by that “regression” does not loom somewhere in our thoughts. The further we get from the last episode or reaction or regression, it seems easier to think that fear is gone… but it is not, it is still there, looming. If this is mito that she is dealing with, I have read enough stories and heard enough case studies to know that fear may never be gone, that sensitivity may always be there, it is just our hope that we can lessen it somehow, so that the obstacles are not as harmful when she encounters them as she continues to walk this tight rope we call life.

What I have learned about AUTISM-

The more I researched and the more I read to educate myself on Autism, the more I realized that as it stands now, Autism is regarded by the large majority of the medical community as a “psychiatric” disorder. It is diagnosed by observing a child and observing behaviors or actions of a child and comparing them to a criteria (which is listed in the DSM IV).  What I know NOW after traveling the path we have, is that AUTISM IS NOT just a PSYCHIATRIC DISORDER but ALSO a NEUROLOGIC, BIOCHEMICAL, METABOLIC, GASTROINTESTINAL, INFLAMMATORY, IMMUNOLOGICAL, TOXICOLOGICAL AND EPIGENETIC DISORDER, as well. And that, my friends, is something that is not being recognized nearly OFTEN enough or SOON enough, especially by those who are giving parents that diagnosis.

So WHY do I write about Autism, because there is so much that I DIDN’T KNOW before I started this journey…and so much I wished I would have known.  I write in hopes that it will spare ONE OTHER PARENT the pain, agony, frustration, and feeling of sheer helplessness, as they try to figure out why their baby is SCREAMING unconsolably, while everyone around them is telling them it is NORMAL and everything will be FINE, and it is JUST a STAGE that they will OUTGROW. BUT NOW I know… there can be MUCH MORE TO IT, than that.

I will leave you with my Month worth of FACEBOOK posts for Autism Awareness Month- there is much more to be AWARE of than the fact that this disorder exists.

________________________________________________________________

AUTISM AWARE Facebook posts (April 2012)

World AUTISM Awareness Day and April is AUTISM awareness month… for the next few weeks I will be posting a story, video or blog post in an attempt to educate and spread awareness about this EPIDEMIC affecting our children… even if your child is healthy and neurotypical, I hope that you will take a moment to learn, share and take action.

AUTISM AWARE: Harvard Pediatric Neurologist Dr. Herbert speaks about DIET AND TOXINS and how AUTISM should be treated as it can be REVERSED! RARE GENETIC factors are hardly ever a factor…but these kids are SICK. http://youtu.be/lOYdpxpFX08

AUTISM AWARE: The “new” statistics are out: 1 in 88 children (using data from children born in 2000) has AUTISM, for boys it is 1 in 54. Do you know a child with autism?
If you don’t, you will… because at these rates: In 5 years, autism could affect 1 in 50 children or 1 in 31 boys. There will be at least one child with autism in every classroom in America.
It is MORE than a psychiatric disorder, it is NOT bad parenting, it is not “unruley kids”, it IS a MEDICAL CONDITION with BIOLOGICAL DYSFUNCTION- educate yourself, educate a friend, be a friend to a mom who may be struggling!
Here is just one possible cause of AUTISM- underlying mitochondrial disease:
http://www.mitoaction.org/files/Autism-OXPHOS_1.pdf

AUTISM AWARE: Here is a press conference given yesterday by grass-root parent led autism organizations. It is a long one…but some highlights:7:00 Flaws in CDC numbers, 15:00 A parent’s story (Katie Wright), 19:40 Donald Trump quote,20:45 Vacccines and Autism, 33:10 Detoxification and Mitochondrial Disease, 36:10 Hepatitis B Vaccines, 38:14 Developmental Regressions, 43:20 Advice to pregnant women http://www.ustream.tv/recorded/21549838

AUTISM AWARE: A Blog by a MOM that DOES NOT have any Autistic Children … but who is surrounded by friends that do, read what her friends are saying on facebook…
Thank you, warrior mom,BS,  for suggesting this blog to me. http://gianelloni.wordpress.com/2012/04/04/the-autism-epidemic-seen-through-a-day-in-the-life-of-my-facebook-newsfeed/

AUTISM AWARE: Autism and the Church~ If you attend a place of worship, do they have special needs ministry? If so please comment with your church’s name below.
HAPPY EASTER ! http://thinkingmomsrevolution.com/2012/04/05/autism-and-the-church/

AUTISM AWARE: Cerebral Folate Deficiency (a TREATABLE condition very common with kids with Autism and Mitochondrial Disease) -Learn more on the Mitoaction Conference Call  To read a summary of what will be discussd on the Tuesday, April 10th teleconference, visit the link below: http://www.mitoaction.org/autism/february-2012-teleconference

AUTISM AWARE: Are your kiddos on the “spectrum”? Allergies, Asthma, Anxiety,ear infections, OCD… the list goes on… the more I leard, I realize the “spectrum” is broader than I ever thought-  http://thinkingmomsrevolution.com/2012/04/03/autism-awareness-infrared-style/

AUTISM AWARE: Could Tylenol be one of the causes of Autism?

http://babyfoodsteps.wordpress.com/2012/04/09/mitoxic-why-acetaminophen-may-not-be-good-for-any-of-us-especially-mitochondrial-disease-patients/

AUTISM AWARE:Robert MacNeil’s (PBS NEWS HOUR) grandson has autism… a WHOLE BODY MEDICAL CONDITION- Gastro INTESTINAL, NEUROLOGICAL, and METABOLIC…take a glimpse:
http://www.pbs.org/newshour/bb/health/jan-june11/autism_04-18.html

AUTISM AWARE: Autism Medical Symptoms:
https://www.stopcallingitautism.org/autismimmunedysfunction.html

AUTISM AWARE: One Family’s journey to recovery…. http://youtu.be/QsVNYMG5bWs

AUTISM AWARE: a friend passed this one along, thanks AB,
Isolation is an issue for many parents of unique kiddos!

http://www.specialeducationadvisor.com/fending-off-isolation-5-tips-from-parents-of-kids-with-autism/

AUTISM AWARE: WHAT NOT TO SAY TO AUTISM PARENTS- http://www.autism-island.com/2012/03/50-things-you-should-not-say-to-autism.html and

WHAT TO SAY: http://www.autism-island.com/2012/04/50-things-you-should-say-to-autism.html?spref=bl

AUTISM AWARE: The first time that the A-word was brought up was after I described our daughter’s reaction (15 months old ) to drinking cow’s milk for the first time: banging her head on the floor, screaming in pain, and flailing to a doctor. The doctor said, “Hmmm, that’s odd, it can’t be the milk, maybe it is Autism? She is too young to tell, so we will have to wait for a while to see if that is what it is.”
Oh what a journey it has been since then…
There are some words and conversations you just never forget…
http://thinkingmomsrevolution.com/2012/04/18/do-you-remember/

AUTISM AWARE: Is Autism Genetic or Environmental?? http://video.foxbusiness.com/v/1542702783001/

AUTISM AWARE: HOW IS Autism Diagnosed… this article describes the observation, question/answer, behavioral many hour long subjective process… NO MEDICAL TESTS are done as part of an AUTISM diagnosis, yet so much can be going on at the cellular level of Autistic children… this article is a step in the right direction ONLY IF medical testing: including genetic, metabolic, mitochondrial, and nutritional testing are done along side a psychological assessment. http://news.harvard.edu/gazette/story/2012/04/detecting-autism-in-matter-of-minutes/

AUTISM AWARE: Dr. Q (http://www.clinic4kids.com/ ) answered the question last night “What do you think causes Autism?” from his perspective as a pediatrician: BRAIN (nerve inflammation or destruction), GUT (malabsorption and poor nutrition), IMMUNE (lack of Defense), DETOX (inability to remove waste), GENETICS (susceptibility), and EPIGENETICS (outside influences)…..

AUTISM AWARE: Autism in other countries… France…. this post makes me so sad, mad and frustrated all at the same time… what do you think? http://thinkingmomsrevolution.com/2012/04/26/the-forgotten-children/

AUTISM AWARE: Whether or not you think vaccines have anything to do with autism or not, this article is a MUST READ for any parent on the POLITICS and INFORMED CONSENT of the vaccine industry, so that you can make the very personal and individualized INFORMED decision of vaccinating your children. I am embarrassed to say, that prior to my daughter being born, I was SO UNINFORMED.
http://thinkingmomsrevolution.com/2012/04/27/unavoidably-unsafe-2/

9 of 50 Babysteps- Food Coloring

Artificial Colors have been on my radar since early on in this journey… they became a cornerstone in the 3 FREE Babysteps and recently emerged again as I delved into their harmful effects on the body at the cellular level and investigated their mitochondrial toxicity. It was after I wrote this post  on the toxicity that I cleaned my baking cupboard out and found a box of food color (pictured below) that my toddler son (now 7 yr old) had labeled with a MR. YUCK sticker way back when, one day when I let him put those stickers on every surface he could stick them too…  I had to stop when I saw it to realized just how ironic yet blatantly obvious this fact had become to me in the last 3 years and how in the DARK I was about all this stuff when he was a little one, his sister’s age. Artificial colors are just what they say they ARE: ARTIFICIAL and guess what, they ARE also TOXINS (but don’t worry if you don’t believe me about that one, it has taken me a long time, and a lot of reading and observing to be convinced of just how true that statement is! Baby steps, my friend, you will get there, keep looking, keep experimenting, keep being AWARE….and then one day you will “see” it too.)

But…what if you want a pretty pink cupcake or a pretty green leaf or a pretty blue cookie monster atop your cake?? What is one to do??

Natural Food Coloring!!  I am very thankful to my friend who let me borrow her green in a pinch (thanks D.W.)… which worked great in making some mitochondrial disease awareness ribbons with icing for a recent Mitoaction family social!

The food coloring I used was purchased here and they have quite a selection for all the colors in the rainbow. The green contained: Spinach, turmeric, cabbage, plant glycerine.

I found this site that has a great price on a SET of them: 6 for $24.95!

If you are not in the mood to experiment in the kitchen, then head to Whole Foods! Their bakery department uses NO Artificial Colors and their cakes are just as pretty as I have seen in the artificial-laden grocery store.

Here is a photo of what makes those pretty colors at Whole Foods where they claim “There’s no Fakery in our bakery!” which I LOVE!

MITOXIC-Why Acetaminophen may not be good for any of us, especially mitochondrial disease patients

What is the one medication you have been told has been safe to take when pregnant or to give to young children, even month old infants?

Acetaminophen ( also known by the brand name Tylenol in the USA and paracetamol in Europe).

I, (along with many of my friends) once HAD no doubt that this medication was ok for anyone, even our children.
For me… that was until I was told my daughter was suspected to have a metabolic disorder called mitochondrial disease, in which acetaminophen is discouraged for use in mito patients, because, you guessed it, it is mitochondrial toxic!  Now my question was – is it toxic to everyone’s mitochondria or only those with mitochondrial disease?
No one could answer that for me…
So in the meantime we stopped using acetaminophen in our house.
Then in January, I listened to a conference call by Dr. Shaw of Great Plains Laboratory about the causes of AUTISM.  Was I shocked when the MAIN CAUSE that Dr.Shaw focused his talk on was : ACETAMINOPHEN… A little, Yes, but in the grand scheme of my research about mitochondrial disease and it’s links to autism and the many environmental and pharmaceutical drugs which are now linked to causing mitochondrial damage and disease… I am not really all that shocked.  I am rather intrigued and validated, though, that someone else believes that this toxicity and our children’s health was as big of an issue as I Believe  it IS!!!
Dr. Shaw is in the process of publishing his findings so in the meantime I will refer to this wonderful blog, Ventography’s cliff note version of the conference call and of the update:

Part 1  Acetaminophen and Autism

Part 2  Update from Dr. Shaw

Dr. Shaws talk is largely centered around this research by Dr. Schultz:  Acetaminophen use after MMR is associated with autistic disorder

Abstract

The present study was performed to determine whether acetaminophen (paracetamol) use after the measles-mumps-rubella vaccination could be associated with autistic disorder. This case-control study used the results of an online parental survey conducted from 16 July 2005 to 30 January 2006, consisting of 83 children with autistic disorder and 80 control children. Acetaminophen use after measles-mumps-rubella vaccination was significantly associated with autistic disorder when considering children 5 years of age or less (OR 6.11, 95% CI 1.42—26.3), after limiting cases to children with regression in development (OR 3.97, 95% CI 1.11—14.3), and when considering only children who had post-vaccination sequelae (OR 8.23, 95% CI 1.56—43.3), adjusting for age, gender, mother’s ethnicity, and the presence of illness concurrent with measles-mumps-rubella vaccination. Ibuprofen use after measles-mumps-rubella vaccination was not associated with autistic disorder. This preliminary study found that acetaminophen use after measles-mumps-rubella vaccination was associated with autistic disorder.

LAYMAN (and LAYWOMAN’s) TERMS
And now I will add my 2 minute ” as non-technical and non-scientific as I can be” description of why ALL OF US should limit or discontinue our acetaminophen usage:

There is a chemical in your body called glutathione (we will call it the GOOD Guy with a capital {G}
{G} Is responsible for helping get toxins out of your body (through the liver especially in the case of  acetaminophen). Acetaminophen, when metabolized lowers the amount of  {G} and therefore also lowers your body’s ability to detoxify (it also increases the level of a BAD GUY {NAPQI}. It has been shown that children with autism and those with mitochondrial disease have lower levels of {G} to begin with.  Think about when you normally give acetaminophen to a child- when they have a fever, or pain (with vaccines, teething,etc)… Think about what comes along with fever and pain:  bacteria, viruses, ingredients in vaccines that the body must get rid of: basically TOXINS ( ie. anything foreign in the body that it must rid itself of) So if you have just given your child  Tylenol and at the same time they are fighting TOXINS (from any type of source- real bugs or man-made ones), your child’s main detoxification mechanism has just been reduced and therefore the ability for those TOXINS to do more harm has been increased, all while taking the acetaminophen has created more toxins by its metabolism {NAPQI} that must also be detoxified.

Why oh why does no one tell you this stuff?? Why oh why does it take moms and dads of autistic children to blog about this and for a few clinically trained scientist and doctors like Dr Shaw, Dr. James, Dr. Waring, those in the naturopathic world or this forward thinking psychiatrist to study it and publish it?

A very optimistic (perhaps naive) part of me wants to believe the powers that be are not telling us because they don’t know, and they just haven’t studied this. But the other side of me thinks they might know, and may have studied it since it has been on the market for many years, and  since acetaminophen is a $$ making product, that may be some motivation not to let the cat out of the bag to the consumers?? And then the third part of me realizes that this has been studied and you can find information on it in the scientific and medical literature..and that maybe we all need to take responsibility to do our own research and ASK Questions before we put anything in our (or our children’s) bodies.

THE SCIENCE

If you need more scientific/research proof… Here you go:

Here is a web conference given by Dr. Jim Dykens, Director of Investigative Cellular Toxicity at Pfizer Drug Safety Research &  Development and author of the 2008 book “Drug Induced Mitochondrial Dysfunction”. Though he does not discuss acetaminophen specifically he talks about the rile of mitochondrial toxicity screening and how it HAS NOT AND IS NOT BEING DONE on ALL DRUGS.  MITOCHONDRIAL TOXICITY (or Liability) Screening is NOT MANDATED by the FDA, many drugs are found to have mitochondrial toxicity after they are approved and placed on the market, and too many people die or are injured by the drug (then it is studied further and found to have organ specific mitochondrial toxicity, in most cases).

Also here is a link to my post on vaccines with links to studies on Glutathione: {G}

A search on pubmed (acetaminophen mitochondrial) yielded 277 results, here are a few recent articles (focused on hepatotoxicity- liver toxicity):

The mechanism underlying acetaminophen-induced hepatotoxicity in humans and mice involves mitochondrial damage and nuclear DNA fragmentation.

Oxidant stress, mitochondria, and cell death mechanisms in drug-induced liver injury: lessons learned from acetaminophen hepatotoxicity.

Mechanisms of drug-induced liver injury: from bedside to bench.

Acetaminophen-induced hepatotoxicity.

As soon as Dr. Shaws paper is published I will post it here.

Here are a few more references, for your reading pleasure:

Acetaminophen, NAPQI and glutathione

Side Effects of Tylenol

Don’t Fear the Fever, Fear the fever reducer

And finally…could this be why last summer the ADULT dose of Tylenol was lowered?

A Question?

Do you use Acetaminophen in your house?? Has any mainstream doctor advised you of the side effects of Acetaminophen?

I  was relieved that a trip to the ER for my daughter this past year, yielded a warning from the ER resident, saying that for fever control in mito kids (or suspected mito kids), Tylenol should be avoided due to its liver toxicity risks.  Now on to educating MORE doctors and pediatricans that this is a real risk for many kiddos (and adults). With the autism rates being recently announced at 1 in 88 by the CDC, and the number of children being diagnosed with mitochondrial disease climbing each day, the urgency and time to determine how much acetaminophen is contributing to this epidemic… is NOW!