Interview with Andy Cutler

 

How many children do you know of personally who have recovered by your definition of not needing a diet. not needing supplements being totally normal?  How many children do you know of?  -Thailia

I interpret “personally know of” very differently than doctors do.  I don’t just take the word or some doctor.  I only believe if I met them in person or if I talked to a lot of people over a lot of years who are observing them.  So from that much more limited stand point where I could testify, yes this is true, I know of dozens.  There are probably many hundreds or even a couple of thousand.  I know of many, many hundreds who are dramatically improved but they do need some ongoing support and probably the number is much more than that.  -Andy

Daily Kos: The Story of Julian (goodbye to autism)

The Story of Julian (goodbye to autism)

bylanellici

First, the Before picture

Here is my son Julian, at four years old: he couldn’t play with toys; he scowled most of the time; he had explosive, violent rages; had little or no recognition of danger; panicked easily; aggressive; little to no tolerance for changes of any sort; intolerant of light, loud noises, anyone touching him; constantly sick with asthma, ear infections, virus after virus after virus.

Julian would compulsively rub his head all over me and want to put his hands and head under my shirt. He made strange noises a lot of the time, something like the sound dolphins make. His outbursts of rage seemed most of the time to come out of nowhere.

How I found the way out, after the fold. It gets worse before it gets better.

He never played with his little sister, but rather could not tolerate her presence at all, and we couldn’t leave the two of them alone because Julian could unpredictably become aggressive. He never expressed empathy for people or animals. He was not developing any capacity to play by himself. At times he seemed not to be able to think clearly, although he was very intelligent. No pretend play whatsoever. At school he was self-contained; he didn’t explode, but made no friends and did not become actively involved in what was happening. He watched. He never waved hello — he didn’t seem to understand the point of greetings at all.

Our home life was, as you might guess, a disaster. My husband and I were deeply stressed out and my little daughter was routinely very frightened. We pretty much stayed home all the time because crowds made Julian so upset, but home was no place of calm no matter how much we worked at making it that way. On his third birthday I invited three kids and their moms over, people he had spent a lot of time with, and his reaction, when the first child arrived with a smile and a present, was to scream, “I HATE OTHER PEOPLE!” and run upstairs to his room and refuse to come back.

It’s also true that Julian could be extremely interesting to talk to. He invented his own terminologies, he asked questions such as “Who invented language?” while fighting the carseat buckle, he could draw pictures from perspectives that were absolutely his own, unique and strange and lovely.

At that point I was a nearly total believer in mainstream medicine. He got every vaccination on time, he went to every well-visit, I gave him fluoride drops because the pediatrician told me to, round after round of antibiotics because the pediatrician told me to. I followed directions. But I had a child who was a wreck, and sick nearly all the time. When I suggested that something might be wrong, she reassured me that he was fine (a story many many parents of autistic kids can tell). Julian was my first child, my mother died before he was one, my other relatives thought he behaved badly because I was a crummy parent — so I relied on the pediatrician’s observations.

But then Julian fell off a cliff. He spiraled into a meltdown that wouldn’t quit. Hours and hours of crying every day, violent, vicious hissing talk about how he wanted to chop me up into little pieces and put me in the trashcan, how he wanted to kill people, how he wanted to die. He was FOUR……..

via Daily Kos: The Story of Julian (goodbye to autism).

Just say NO to EDTA

 

There are many Docs out there who still use EDTA to chelate autistic children.  If you find yourself with a doctor who is recommending this type of chelation you should certainly run in the other direction.

There are many different methods of chelation being promoted today and we must be vigilant in choosing what is safe for our children.

There is a lot of hype in the media about the dangers of chelation therapy.  They regularly accuse chelation as dangerous, saying it has killed one child already.  They are correct.  IV EDTA has in fact killed a child.  A young boy died tragically and unnecessarily by improper use of a form of EDTA.

EDTA binds to other needed minerals as well as to heavy metals depleting the body of necessary nutrients.  What happened to this boy was a tragedy as the wrong medicine was administered.  CaEDTA is EDTA bound with calcium so that when it is administered it doesn’t deplete the bodies calcium levels. This boy was mistakenly given sodium EDTA instead of CaEDTA.  It was given in a high dose through and IV and the rapid excretion of Calcium caused him to suffer a cardiac arrest and die.  We feel very sad for this family just as we feel sad for the many children who have been injured by iatrogenic (doctor caused) means.

Unfortunately the negatives of EDTA do not stop by simply using the correct med (caEDTA) as those chelation docs would suggest.  There is a second insult which this medicine causes in our children.  Research by Boyd Haley has demonstrated that when used in the presence of mercury toxicity the EDTA binds with the mercury forming HgEDTA.  This substance has been shown to interact with brain tubulin (a neuroprotein) and increases the damage caused by mercury.

While EDTA is an effective treatment for cardiovascular plaques and is effective at removing lead, it should not be used in Autistic children (DMSA is an alternative chelator of lead and can be safely used orally).  For cardiovascluar patients who wish to pursue EDTA treatment it should only be used when preceded by safe mercury detox (using ALA) to clear mercury from fatty tissues including the brain.

 

haley_study_edta_and_mercury

 

 

 

Did Acetaminophen Provoke the Autism Epidemic?

tylenol bottle closeup

http://www.altmedrev.com/publications/14/4/364.pdf

I was invited to view a webinar on a possible connection between Autism and Acetaminophen some months ago.  When I was first told about the next great claim of a definitive cause for Autism, I was skeptical.  I had listened to so many debates on causation and autism.  Honestly, after awhile, the obvious politics involved becomes very tiresome.

I voiced my skepticism, but as this mother proceeded to describe some of the accusations against Acetaminophen (Tylenol), I started to listen more closely.  That is when it hit me.  Unlike all the other causation theories, this could actually explain my child’s Autism and his remarkable improvement through chelation.

You see, my son did not match the typical case histories of othAcetaminophen and Autismer Autistic children.  In fact, I almost failed to pursue biomedical treatments because he did not have a typical story.

My child did not regress.  He never developed normally.  After his diagnosis it became apparent that he was born with Autism.

My child did not have any health problems or frequent ear infections.  In fact the only ear infection and subsequent round of antibiotics he had ever had was at 2.2 years of age, well after his Autism was apparent.

My child was never vaccinated.  I did not receive any vaccines or Rhogam while pregnant.

This was my 5th child.  If his Autism was solely due to my toxic body burden one would expect my previous children to be more affected.

We did not move.  My 3rd child and 4th child were both born and raised in the exact same apartment building as my 5th child.  The environment hadn’t changed.

I really was at a loss and none of the typical biomed explanations quite fit our experience.  Still biomed advocates were proposing using natural safe approaches, like diet modification along with vitamins and other supplements.  These weren’t things that could damage my child, so I really had no reason not to at least give it a go.

We did the GFCF diet and saw improvement.  We did yeast treatments and gut supports, and saw improvement.  He improved on zinc.  He improved on B6.  He improved with almost every intervention we tried.

Then we found AC chelation and he improved to point that most would consider him recovered.  He is in a typical school with typical peers with no supports.  He has friends and has been invited to parties.  In fact, at the end of this year they tested him for the gifted program and determined that he was academically gifted and will start going to an enrichment school one day a week because his typical classroom isn’t quite academically challenging enough.  He is flourishing.  (He does still have some precocious speech and slightly odd gestures but no sign  of Autism.  He was diagnosed with low functioning Autism at age 2.5).

With that kind of drastic improvement with chelation protocol, it was apparent he was metal toxic.  But how?  By now the how didn’t matter much to me.  We left the how question alone to dangle in the wind as we had found the solution, so it didn’t seem important to figure out exactly how the problem started or what the cause could have been.

Never the less the question always dangled, it never totally disappeared from our minds.

Insert the Acetaminophen theory.

You know what was different about my 5th child’s med history?  I was over due and very uncomfortable during my last trimester.  It was so bad that I could not even get two full hours of sleep per night.  I was miserable and exhausted.  My midwife was concerned about whether I would have the energy to mount a proper labor and delivery.  I asked her if there was anything safe I could take while pregnant to help me sleep.  ( I just knew her answer would be no).  She said yes and came back with an Rx for Tylenol 3 with codeine.

I told her I thought it was over kill, “I am uncomfortable but I am not in pain.  I just need some sleep.”

She said that it didn’t cross the placental wall and that although I didn’t need the pain relief, it was the only thing they could give me that was safe for my baby.

I took Tylenol 3 almost every night for 2 weeks.

Quote from article:

Acetaminophen taken during pregnancy may provoke autism present at birth…

Finally, a possible explanation for what we had experienced.  The Tylenol I took may have interfered with his ability to detox environmental toxins as well as impaired his brain function and immune system.  The toxins his body built up could be responsible for the rest.  Is this truth or theory?

At this point it is only theory.  But it is the first theory that had a chance of explaining what we saw, and the research is convincing.  It is solid enough that I would never give Tylenol to another child.  I would recommend all children and pregnant mothers avoid Tylenol and other acetaminophen containing products.  Until more research is done it only makes sense to be cautious.

Lead Toxicity: Where Is Lead Found?

Summary: Where Is Lead Found?

Lead Source Contaminated Media

Lead solder/pipes

Drinking water

Packages or storage containers

Food, beverages

Paint (pre-1978)

Household dust and soil

Production sources

Imported foods, remedies, cosmetics, jewelry

Mining and smelting

Outdoor air and dust

Workplaces involving lead

Outdoor and indoor air and dust

Gasoline (pre-1988)

Soil

via Lead (Pb) Toxicity: Where Is Lead Found? | ATSDR – Environmental Medicine & Environmental Health Education – CSEM.

Follow the link above for the full article as well as a very good printable resource on sources of lead toxicity.

Tip:  Since calcium apposes leads absorption and storage (especially bone stores) getting adequate calcium is especially important for growing children.  Raw milk, cheese, and yogurt as well as quality calcium supplements and bone broths are excellent sources of calcium.

Autism Idioism: “Some kids just grow out of it.”

Subject: Quinn, a boy with autism, and the lin...

Yes I did just make up a word.  Guilty.

But what would you call a commonly expressed statement made about Autism as if it is fact when it is purely fiction and often rude to boot?

Idiom: A form of expression natural to a language, person, or group of people

Ism: A distinctive practice, system, or philosophy, typically a political ideology.

Idiot: A stupid person.

I am sure you all have a host of unintelligible statements people have made about your child or Autism in general.  I am usually pretty patient with the ignorance but sometimes it just crosses the line.

I was talking to a parent about my sons amazing progress with chelation.  I was explaining that regardless of the politics and double blind peer-reviewed studies doctors need in order to “treat” our children, we as parents can decide if something is helpful based on observation.  That based on the amazing benefits we have seen with chelation it is quite apparent that he had heavy metal poisoning.

That is when another parent felt the need to join the conversation just to tell us about her friend’s child who just grew out if his Autism.  She said that is probably what was happening to my son.  Unbelievable.  What is even more unbelievable is that I have actually had two unrelated people at two separate times make this same suggestion, lol.

Another Autism idioism we hear all the time is that the quiet, quirky kid we sat next to in school was probably Autistic, but they weren’t as good at diagnosing it back then.  (It was actually my son’s pediatrician who said this to me).  One problem with that theory, I do not recall that quirky kid ever flipping out, screaming, throwing things, then hitting, scratching, and biting any teacher who tired to contain him just because someone moved his eraser.  Thanks to chelation we no longer see these total meltdowns, but they were so much a part of our daily lives I can not imagine someone suggesting my son could have ever gone undiagnosed.  No, that quirky kid did not look anything like my son.

Do any of you have Autism Idioisms you’d like to share?

 

 

Adrenal Fatigue: Something was very wrong.

When we started AC chelation our dose was a bit too high.  Remnants of our old DAN!s protocol still lingered in my mind. I mean 1/2 mg per pound for three days is pretty close to 10 mg per pound every third day.  So we started at just under 25 mg per dose of ALA and DMSA together.

The changes we were seeing were amazing.  In only three rounds he had increased conversational language, he was more social, more tuned in.  He was listening.

This child who wouldn’t respond until you had called his name 15 times…. this child who was content just to stimm all day on the computer (unless he was running off or tantrumming of course)…. this child who scripted all day and all night without meaning to his words… this child was in the living room minding his own business and his mother and father were talking among themselves at the kitchen table.

We were having a normal conversation in average tones, and we were talking about him.  I do not recall which of us used his name, but he heard it and from the other room he yelled, “Coming!”  Only to appear in the doorway a moment later and say, “you called me?”

It was incredible.  We were doing something soooo right.  Amazing.

On the other hand, something we were doing was sooo wrong….

He was whiny, clingy (this from a child who never wanted to be held), sad…..  He cried so easily, and the mood swings were drastic.  On minute he was fine and the next was a complete meltdown over some tiny thing like dropping his toy.

We also had a return of a very old behavior.  When he was younger he used to crawl along the floor with his head on the carpet sliding it along the ground.  It was a very odd behavior that we were happy to see go away and very unhappy to see return.  He was also turning upside down a lot.  He did hand stands on the wall, on the couch, in the chair.  This wasn’t completely abnormal for him as it was part of his trouble with vestibular sensory processing issues, but it had increased substantially.

I was on a mission to figure out how to keep our wonderful gains, but get rid of these awful side effects.

It was suggested that some of the behaviors we were seeing were headaches do to dosing to high.  We lowered the dose down to 1/4 mg per pound and the crawling along on his head and increased headstands stopped.  Yeah!  one piece solved.

A parent in one of the groups I was part of mentioned Adrenal fatigue, so it was back to the books.

That is when we discovered ACE.

Adrenal cortex was our happy pill.

I began by giving ACE in the morning, starting slowly and increasing by 1/2 cap at a time.  We decided to follow Andy’s timing recommendations for Hydrocortisone.  (between 7-8 in the am, around noon, and between 5-6 in the pm).  This worked like a dream.

All his increased whiny, fearful meltdown behavior stopped (we still had meltdowns, but they were back to the regular kind we had grown accustomed to).

The something very wrong was solved.  Of course he had adrenal fatigue even before we were chelating we just didn’t know it.  So we got bonus result from this wonderful little supplement.

My son never slept.  We struggled with it for years.  It didn’t matter what time I laid him down, he was up until at least midnight, sometimes 1 am.  Then he would wake up again at 3am or 4am.  He would be wide awake, ready for the day, full of vim and vinegar.  uggg.

Of course he was down for a nap around 8am but by then it was too late for me.  I was chronically sleep deprived.  All we ever heard about was melatonin.  I would dose it before bed, and then often again in the night.  It would work for a week or two, then it would start to make sleep worse and we would stop using it.  A couple of weeks later we could bring it back again.  It was a never-ending cycle we had gone through for years.

But when we started the ACE the most marvelous thing happened.  He slept through the night.  It was still a struggle to get him to fall asleep, but there were no more night wakings.  This was one of the biggest gifts I could get.  Better than winning the lottery any day.

Supplements: When and How?

Dietary supplements, such as the vitamin B sup...

(Photo credit: Wikipedia)

Many parents struggle with giving vitamins.  After all they look a lot like medications: they come in pills, capsules, liquids, and powders.  We even  treat them a lot like medications: we talk about doses and timings and how they help heal and support the body systems.

Now we are supposed to give our children medicines without a doctor?  The truth is doctors are not trained in the use of vitamins.  In fact a doctor’s primary job is to diagnose and treat disease with medicine.  They do not know how to keep your child healthy.  Often they do not even know how to prevent the disease process (just treat it once it develops).

Vitamins are much more like food than medicine and parents have been feeding their children since the beginning of time.   We are capable of making wise choices as long as we are armed with certain key pieces of knowledge.

  • How do I choose a quality supplement?
  • What the supplement can do for my child (why might I give it?)
  • How to much to give/how often?
  • How to know if I am giving enough/too much?

In the following posts I will answer the questions above so that you, the parent, will feel as capable and confident giving your child supplements and you do feeding them dinner.

How to Choose a Quality Supplement

All Are Not Created Equal

As you may have already experienced, figuring out how to choose a good quality vitamin and mineral supplement can be a confusing and time consuming task.  There are several important factors that you should consider when looking for a good quality vitamin and mineral supplement.
One of the first and simplest things to look for which will indicate that you are getting a decent supplement is the GMP (Good Manufacturing Practices) certification.  This certification is important as it means the company has met certain industry specific conditions to ensure that quality controls are implemented and the environment your supplements are produced in is clean.  This ensures the safety of your supplements.

The second thing to note is that your supplements have been third party tested for purity and potency.  This ensures that what the company says is in the vitamin is in fact there.  Having this done by a third party means that a company separate in every way from the manufacturer is double checking their work!

Once you have established the basic level of protection and oversight exists, there are a few other things you can look for to determine if the supplement you are going to buy is worth the hard earned money you are going to spend on it.  There are a few questions you should keep in mind.

Will the Supplement  Actually be Absorbed by your Body?

There are many steps that the ingredients in your vitamin and mineral supplement have to go through in order to make it all the way through your digestive tract, into your blood stream and ultimately to where your body needs them. It’s a complex process and there are many opportunities for the process to fail. Let’s look at some factors that can affect the journey your supplement takes and also affect how well your body can absorb a supplement’s ingredients.

What Is Bioavailability?

Bioavailability is the degree to which a nutrient is available to the body for use. From a non-biochemistry perspective: the nutrient has to make it all the way from your mouth to the cell and be in a form the cell can use.

What Is Chelation?

Chelation is very important when it comes to making sure that the minerals in your supplement are bioavailable. Chelation refers to a process that increases the absorption of minerals such as calcium, magnesium, and zinc.

It can be hard to get minerals all the way to that bioavailable state that was discussed earlier. Chelation involves wrapping the mineral in an amino acid so that the body can more easily absorb it. This can improve the absorption of some minerals from only 10% absorption for a non-chelated mineral to 45% or more for a chelated mineral.  So when you are looking at the label of a vitamin supplement and you find a trace mineral such as selenium as one of the ingredients, you want to see something like “Selenium (as Selenium Chelate)” on the label. This indicates that the selenium mineral has been chelated.

The Foundation

If fifty people were given a piece a paper and asked to design their dream home you would probably see 50 different plans each as different as the next.  But even though each of our lifestyles and needs differ, we have one thing in common.  We all need to build our home on a solid foundation.  I am sure this is not the first time you have heard someone use this very common analogy, but never is it more true than in your child’s supplement protocol.

Ideally you should always begin with a good quality multivitamin.  It is truly amazing the variety of processes our bodies complete daily with just a few different nutrients.  Taking a good quality multi often squelches the need for to many individual supplements.

Look for a multi with balanced B vitamins.  High dose B vitamins may be beneficial for some of our children, but there are specific consideration to make when choosing to supplement individual Bs (I will go into more detail in a future post).  For a balanced B look for one with equal amounts of B1, B2, and B6 with about 3x the B3.  With decent amounts of other nutrients.  To meet the needs of Autistic children it is best to look for one with higher levels of Vitamin D and Vitamin A as well as one free from copper, iron, and manganese.

The best time to give the multi is with meals as this most resembles how the body is naturally designed to extract nutrients.  There is more stomach acid and bile available when taken with food and many nutrients require the presence of others for proper absorption.