Guts, Bugs & Treatment

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One family’s journey with Ausm Guts, Bugs and Treatment Jim Chapman and Jane Wills March 2013

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One family's journey with Autism by Jim Chapman & Jane Wills.

Transcript of Guts, Bugs & Treatment

One family’s journey with Autism

Guts, Bugs and Treatment

Jim Chapman andJane Wills

March 2013

Treating Autism Publications, 2013

ISBN 978-0-9575787-1-5

Contents

Introduction 1

Chapter 1 A son is born and causes an unimaginable amount of trouble 2

Chapter 2 What’s gone wrong? 7

Chapter 3 What can be done? 11

Chapter 4 What’s next? 17

Key research resources 19

Useful organisations and websites 20

Eric’s test results 21

Introduction

Having a child diagnosed with autism is becoming an

increasingly common experience. The latest figures

suggest that around one in every 100 children in

the United Kingdom is now classified as autistic. As

a parent of one of these children you are told that

the condition is the result of some sort of genetic

malfunction and your child will be autistic for life.

This pamphlet tells the story of our journey into the

world of autism. We have written it to give heart,

hope and courage to other parents who are in a

similar position. Despite what you are told by the

professionals you meet at the school, council and

hospital, there are things that can be done to make

things better for you and your child.

Our son regressed into autism between the ages of

2 and 4. During that time he became increasingly

allergic and developed terrible eczema; his

behaviour and communication deteriorated; he

stopped sleeping; and his bowel gradually stopped

functioning. At times, we thought he was going to

die.

Something caused him to become so desperately ill

and to lose the skills he’d once had. Since diagnosis,

we have been on a mission to find out what is behind

the condition. The knowledge we’ve gained has

then helped us to improve his health, happiness and

development. Although he is still autistic, our son is

now free from eczema and he sleeps, eats, defecates,

communicates, engages with other children, and is

starting to learn. We still have hard times but things

have really improved.

Remarkably, the medical profession don’t regard

a child like ours to be ill. Once you have a label of

‘autism’ doctors and consultants appear to be blind

to the symptoms that would normally provoke a

response. Thousands of children are left in a state

which means they don’t eat or poo without pain,

hardly sleep and struggle to go out in public. This is

part of their autism and it is not benign. We argue

that it reflects a problem in the immune system and

it manifests in a range of symptoms and behaviours

that are responsive to treatment.

There is now a developing stream of academic

research that backs up our experience. There are

also a growing numbers of parents sharing their

experiences of helping their kids to recover. A recent

research paper by Deborah Fein and colleagues from

the University of Connecticut, USA, published in the

prestigious Journal of Child Psychology and Psychiatry,

documents the amazing progress made by a group

of children who lost their diagnosis of autism.�

This challenges the dominant view that autism is

a lifelong disability. We are standing on the brink

of new revolutions in science that will have major

implications for our understanding and treatment of

many chronic conditions, including autism. We have

written this pamphlet to help make it happen.

� Fein et al (2013) Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54, 2, 195-205.

Eric Trevelyan Chapman Wills arrived in a hurry on

13th October 2003 and he’s caused an unimaginable

amount of trouble ever since. Even his birth was

spectacular. We crashed over the speed bumps

between Forest Gate and Homerton Hospital in east

London just in time to push him out in the pool.

Eric was a tiny baby weighing just over 5lbs. There in

the ward he seemed so frail next to the babies that

were twice his size. Yet where he was lacking in size,

Eric more than compensated with noise. He cried loud

and hard for almost the whole of his second night on

the planet. Other mothers and even the staff looked

askance as feeding, winding and cuddling fell on deaf

ears. Although things improved when we took him

home the next day, Eric was a restless baby. He cried a

lot during those first weeks of life and this was likely a

reflection of the underlying problems that later came

to the fore.

We loved our new boy. He started to grow and did

all the things he was expected to do. When he was

just eight months old he joined a group of children

being cared for by an experienced child-minder and

he stayed with her for well over a year. Angeline

produced some wonderful film and you can see Eric

pointing, talking, painting, kicking a ball and playing

just like a normal boy would do. In a sobering clip that

would later come back to haunt us, you can see him

cuddling a doll, sitting her in a chair and pretending to

give her some food. We later found out that handing

a child a doll and the tools needed to care for them

is a classic test of dysfunction in children. While Eric

did what he should when he was 12 months old, he

would later have absolutely no interest in dolls and

show no sign of doing anything appropriate with

dishes and spoons.

The regression into autism

It was some time before his second birthday that

Eric started to regress into what we later came to

know as autism. He began to display a series of

symptoms that we now associate with the developing

dysfunction behind the condition. Our wonderful

boy started to suffer from diarrhoea that later turned

into constipation, faddy eating, worsening eczema,

insomnia, hyperactivity, terrible tantrums and acute

anxiety. Eric started to develop some odd behaviour

that we never associated with autism. In fact, we

used to think that these oddities were endearing

signs of a would-be genius. We would laugh about

him giving Nureyev a run for his money as he could

jump and land on the tip of his toes. We would

revel in what looked like unalloyed joy as he sat in

the buggy and flapped his hands like a bird. But we

would also wonder at his extreme paranoia about the

strangest of things. Eric became so frightened of his

grandparents’ weather-vane that he could not walk

past it or even look out of the window in its general

direction. When we took him on holiday to Wales in

the summer of 2006, we discovered that he had an

absolute terror of sheep. The sight of a furry lamb

would trigger panic and screaming until we retreated

to safety. Imagine going on holiday to rural Wales only

to find it impossible to encounter a sheep!

Shortly after Eric’s second birthday, we moved house.

By then his bowel was the most obvious sign of a

problem. When he started with Carina, his new child-

minder, we would often pick him up and find his

clothes in a bag. Even his nappies couldn’t contain the

runny, foul-smelling poo, that would pour out of him

during the day. Carina would wash him off in the bath,

rinse his clothes, put on new ones, and treat it as a

regular part of the job. She did everything he needed

and more, cooking him food that he would not eat,

buying him the treats that he craved and trying to

reduce his anxiety. Looking back, it is hard to imagine

why we were not panicking by then. But even if we

had asked the doctors and health visitors they would

have told us that things like this are common in kids.

Bowel problems and allergies are usually considered

normal these days.

We were also thinking about our experiences of

caring for our daughter. Agnes is five years older than

Chapter 1: A son is born and causes an unimaginable amount of trouble

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Eric. She had been born with eczema on her eye-lids

which dramatically worsened during her first years

of life. By the time she was two, we would find her

scratching her skin until it bled. We used to come

home from the doctors with buckets of cream but

the problem just got worse. Eventually, a chance

encounter with a woman at a Tesco’s checkout in

Leytonstone helped. She told us that her son had

been exactly the same. When they took wheat

and dairy out of his diet he got better and while it

seemed radical at the time – although not a patch

on what we have been through since – we cut out

all dairy, wheat, eggs and sugar from Agnes’ diet. It

was an absolute revelation to find that her skin was

starting to heal just a day or two later. Wheat was

causing the problem and, without it, the eczema

disappeared.

When Eric started to have his problems we thought

that it must be a repeat of the same issue. When

he was about two and a half, and the eczema and

the diarrhoea were getting worse, we thought again

about diet. At that time, Eric’s eye lids were very

swollen and sore. He would sit and scratch for much

of the day. Just as with Agnes, we eliminated the

obvious foods. But this time, the problem was milk.

Without milk, butter, yoghurt and cheese, Eric’s eyes

calmed down and some of the eczema disappeared.

Even better, and unexpectedly, he also stopped

screaming when he woke up at night. Whereas he had

regularly woken up in a state of inconsolable anguish

which took us hours to calm, without milk in his diet

he was much calmer when he woke up at night. His

sleep patterns were deteriorating but at least when

he woke, the screaming was markedly less.

By Eric’s third birthday, we were expecting a gradual

improvement from the allergies and bowel problems

after the removal of milk, but this was the year he got

worse. By the time he was three and a half, Eric was

suffering from extreme constipation. Our little scrap

of a boy would stand with his hip pushed to one side

as he turned puce trying to deposit tiny little scraps

of poo in his nappy. In what looked like an odd mating

ritual, he also used to rub against the nearest piece

of appropriate furniture for hours on end. Moreover,

given that next to nothing came out of his bowel, it

became very difficult to get him to eat. By this time,

Eric looked malnourished. He had a swollen abdomen,

tiny arms and stalks for his legs. He ate next to

nothing, slept very little, cried a lot of the time and

was covered in eczema.

We were beginning to panic and our visits to the

doctor and our requests for referrals started to grow.

We tried liquid paraffin, Lactulose, Senna and Movicol

but none improved his chronic constipation. At the

same time, it was becoming clear that Eric had very

serious challenges with behaviour, socialisation and

learning. Although we were blind to the scale of the

problem, the workers at his new nursery were quick

to call us in with ‘concerns’. By the time that we were

in the queue for an official assessment, we already

knew the result. Diagnosis by Google took just a few

short minutes – type in hand-flapping, toe walking

and lining up your toys – and you get the answer as

clear as day. Our son was autistic.

In common with others, we had always thought

autism was about failure to make social and

emotional contact with other people, but Eric has

always been incredibly affectionate towards us, his

sister and grandparents. We thought we had an

allergic, sensitive child, not a permanently disabled

one. We were in a state of shock akin to bereavement.

Other people mainly think about autism through the

lens of the film Rain Man; they believe your child

will just be a bit odd and become a bit of a boffin.

They have no idea that autism can mean you have a

child who screams a lot, struggles to communicate

and looks like having permanent learning difficulties.

Autism comes in a lot of different shapes and sizes,

and for understandable reasons, those at the most

able end of the spectrum have been demanding to

be treated as ‘different.’ However, when you are

the parent of a child at the more severe end of the

spectrum, you want more than a respect for their

‘difference’; you want their obvious health concerns

to be taken seriously and acted upon.

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Diagnosis, doom and gloom

After what seemed like an interminable wait

(actually about ten weeks) for what was called the

preliminary non-diagnostic assessment, a community

paediatrician gave us the official confirmation that

Eric had severe autism. He was almost four and a half

years old. He had failed (or passed) just about all of

the tests and ended the assessment by tantruming

the doctor’s books and toys all over the room. Even

the kindly doctor seemed shocked at the volume

and ferocity of Eric’s screaming and took sufficient

pity on us to give us a diagnosis before she was

really supposed to. She told us Eric had severe

autism, the kind that you were going to suffer for

life. She took no account of the bowel, sleep and

allergy problems and told us there were no further

medical assessments or treatments. We were to

be invited back in a year or two’s time for a routine

appointment but there was nothing else to be done.

It was as simple as that: we had had a normal baby

who had regressed into autism and he was going to

be like this for life.

We were bewildered. The health professionals had done

their work. We were left with the diagnosis and then

faced a battle to get educational assistance in school.

When we left St Ann’s Hospital in Haringey on that

D-day in February 2008, we were told to claim

Disability Living Allowance, make sure that the

Education Services provided help at school and try

to get Social Services to provide us with respite care.

The official position was – and remains – that autism

should be treated as a matter of communication and

learning impairments. In 2011, the cost of autism

services in the UK was an estimated £28 billion, and

this immense sum mainly comes from the collective

budget for welfare rather than the one funding

health. Even though our experience of allergies,

bowel problems and insomnia are shared by many of

the other parents of autistic children we have met,

and particularly those at the severest end of the

spectrum, the condition is still officially understood as

being a disability affecting the mind.

Beyond the official view, however, as soon as you

put a foot outside the hospital and away from the

professionals, you enter an alternative universe where

people link autism to the environment. Some parents

draw parallels with the canaries that were taken down

the mines to detect dangerous gases during the early

years of the industrial revolution: when the yellow bird

died you knew there was trouble. Today, many see our

kids as the canaries in the mine of a society that has

invented new chemicals, new drugs and new vaccines

without knowing the side effects. Autistic children can

be viewed as sirens of an existential threat that has yet

to be noticed, let alone acted upon; nature’s revenge

for upsetting the natural order of things.

While reassuring to the extent that it leaves your

genes off the hook and implies there might be

something you can do to improve the situation, this

analysis can be almost as overwhelming as the official

position. While you are struggling to come to terms

with the fact that your beloved child has a life-long

disability and will likely never be able to look after

themselves, you are also getting increasingly paranoid

about everything you put in their mouth. Even a

glass of water looks suspect due to the possibility

of chemicals and heavy metals lurking within. In

addition, the environmental theory means that you

are confronted by a cacophony of possible causes

and treatments. For some, autism is caused by the

heavy use of antibiotics, and the poor-quality bowel

microbiota passed on from the mother. For others,

vaccinations are at the heart of the problem, either

due to the viral pressure they put on the immune

system or the toxic stabilisers used to preserve them.

Others blame environmental toxins and heavy metal

poisoning, and there is yet another group who blame

some undiagnosed infectious agent as when scientists

found HIV as the causative agent of AIDS. Such a

multitude of conflicting ideas means that there is

no clarity about the causes of autism, nor the best

way to treat it. Every possible cause has a different

possible treatment. We have been to a good number

of conferences that are designed to bring parents,

practitioners and researchers into dialogue about the

condition and what we might do, and each ascent to

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the podium provides a different world view and very

divergent proposals for treatment.

Thus some of the prominent people in the alternative

autism universe advocate diet, others go for anti-viral

and anti-bacterial therapy, others focus on the immune

system, and yet others advocate special therapy

to remove heavy metals. While these conferences

are a wonderful source of solidarity for us parents

struggling with children who don’t sleep, poo, eat, talk,

play or learn, we are also left in a fog. Without any

clarity about the processes that lead to our children

developing autism, we can’t embark on a proper plan

for their treatment. Of course, some of the existing

treatments do help, and a few children improve so

much that they lose their diagnosis completely, but

the overall numbers who fully recover are small. The

kids who get better are a drop in the ever larger pond

of children being affected by the condition; the latest

figures collated in New Jersey, USA, suggest that autism

now affects one in every 38 of their boys.

Facing the future together

Even though our children are clearly unwell – and

when you meet other parents it is shocking to find

the extent to which our experiences are typical of the

condition – autism is still not even seen as a matter of

physical health. Although there has been an explosion

of new medical research that provides glimpses into

the roots of the condition (that we discuss in the next

chapter), the challenge is to combine these accounts

into a story that captures enough of the picture to

develop treatments that work.

Over the past four years, we have been part of the

international parent-led networks that have come

together online and in person to try and get to the

root of this problem. We have met some amazing

parents who try to keep abreast of the latest research,

publish their findings and ideas online, and look for

places to meet and discuss. There has been a dramatic

democratization of science – largely unrecognised by

the scientists who get the grants to do the research.

And although most of them don’t realise this, these

scientists could benefit from working more closely

with us; we are observing, researching and living with

autism every minute of every day, and as a result, we

have a rich experience and knowledge base that could

be tapped to help find solutions.

In the next chapter we draw on this experience to tell

you a different story about autism. We have pieced

together some of the most recent research and have

read it through the lens of our own knowledge and

experiences to develop a more coherent narrative

about the processes that lie behind the condition.

Drawing on published research as well as Eric’s story,

we argue that autism is a condition that reflects the

breakdown of the symbiotic relationship between

the human body and the flora that live in the bowel.�

We now believe that autism is the culmination of a

process that starts in the small intestine, where the

bacteria that should live in happy symbiosis with

their host are no longer able to do so. In our children,

some species grow more than they should and others

are forced into decline. It looks likely that some of

these organisms are able to penetrate the wall of the

intestine and transgress the body’s defences. Particles

of broken-down food and toxins from the bacteria

reach the blood supply. In response, the immune

system triggers inflammation in the gut and the rest

of the body, including the brain. On top of this, the

changed bowel flora struggle to produce the vital

enzymes needed to break down foods, and many

children with autism have undigested food in their

stool. The bacterial changes and inflammation are

also able to limit the absorption of vitamin B12 and

iron – as well as other essential nutrients – on which

the body depends. As a result, and as we outline in

relation to Eric’s profile in Chapter 3, autistic children

become malnourished and nutritionally deficient and

start to develop biochemical abnormalities.

� While we haven’t cited them in the text, some of the most important research papers are listed in the ‘key research resources’ section at the end of this pamphlet, and a more comprehensive list has been produced by the parent-led charity Treating Autism in their publication Medical Co-morbidities in Autism Spectrum Disorders: A primer for health care professionals and policy makers.

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What started as a fault in the intestinal immune

system can cause a vicious cycle that leads to

the range of problems that we have seen in our

son: diarrhoea and constipation; food allergies;

inadequate growth; and damage to the brain

and neurological system (including sleep, mental

capacity, mental health and socialisation). Thus,

what is seen as a disability and classified as a

communication and learning disorder or ‘difference’,

is actually the symptom of a process of immune-

bacterial-biochemical dysregulation and dysfunction.

Our analysis explains how a range of apparently

diverse symptoms ranging from eczema to anxiety,

constipation to hand-flapping, insomnia to learning

difficulties, are constituent parts of this underlying

disease that has its origins in an impaired immune

system.

This immune damage is likely to have been caused

in-utero or in the early months of life by some kind

of viral assault. Given that each child with autism

suffers this impairment at a different time, and the

impact on the body’s bowel flora will depend upon

the severity of this impairment, the nature of the

existing ecosystem, the diet, the use of antibiotics and

the way in which the child’s immune system is able

to mount a defence, the severity of the condition will

vary in each and every case. This said, however, the

degree to which parents report, and children display,

common symptoms is striking.

We know this sounds far-fetched but in the following

chapter we flesh out the story in more detail. In

Chapter 3, we describe what we decided to do and in

the final chapter, we explore the wider implications

of this argument. If our children are the canaries in

the mine of society they may be telling us something

about the chronic diseases that are now topping the

lists of ill-health. Similar processes are likely to affect

the development of diseases that obviously affect

the bowel (crohn’s disease, coeliac disease), as well

as those that are a product of the imbalance of bio-

chemistry (arthritis, diabetes), and those that depend

on a well-functioning immune system (most obviously,

cancer but also allergies and chronic fatigue). We

explore all of this in the final part of the text.

Chapter 2: What’s gone wrong?

In 2001, there was great excitement when scientists

completed their map of the human genome. Many

people expected this to provide new understandings

of the human condition and to stimulate a revolution

in new health treatments. As it unravelled, however,

the project exposed the remarkably low number

of genes involved in a human being. Scientists

identified just 23,000 genes, which is less than the

number found in a grape. It is now clear that the size

of our genome is not enough to drive our complex

biochemistry and for this, increasing numbers of

scientists are arguing that we depend upon the micro-

flora that live in our intestinal tract. Recent research

has identified thousands of different species of

organism, comprising millions of genes, living in the

human microbiota. These organisms play a vital role

in maintaining our health and once they get out of

balance, they can result in all the problems associated

with autism, but it is also likely to explain many other

forms of chronic ill-health. Having a son with autism

has taken us on an amazing journey to rethink what it

means to be human (and we have come to recognise

that we are fundamentally dependent upon the

micro-flora that live in and with our bodies) and to

rethink the theory of evolution that we all learnt at

school.

Symbiosis and the perils of microbial destruction

In his book The Origin of Species, Charles Darwin

argued that evolution comes from the twin processes

of genetic inheritance and competition for life in a

changing environment. Those species that best fitted

the environment had the greatest opportunity for

reproduction, ensuring their survival and subsequent

population expansion. Those genetic variations (think

of height, build or colour) that brought significant

advantage were reproduced and Darwin thought

that additional genetic mutation would allow new

species to form. Yet we now know that genetic

mutations tend to lead to disease or ill-health (for

example, sickle cell anaemia, cystic fibrosis and

Downs Syndrome) rather than new species of life. In

this context, some scientists are arguing that new life

actually emerges from species associating ever more

closely together. As the environment changes, there

are advantages for organisms that are able to acquire

the adaptive characteristics of other members of their

community, so that bacteria, fungi, plants and animals

may become ever-more integrated with the organisms

that can give them biological advantage such as

additional nutrition, light, shade or camouflage. As an

example, Margulis and Sagan cite the case of lichen

that is a fusion of fungi and algae and can revert to

its constituent parts when put in the appropriate

environment. If you put lichen under water, the fungi

drown and the algae grow and if you put the lichen

in darkness, the fungi grow and the algae die. Lichen

is a product of two species associating together

and through time, and changing conditions, such

associations can become truly embedded in each

other, such that new life comes to exist.

This process of symbiogenesis is very significant in

relation to human evolution because we depend

upon microbes to help us digest our food, extract and

create precious nutrients, and dispose of toxins and

waste. Despite our current fixation on understanding

the genetic make-up of the human being and its

implications for health, our well-being also depends

upon our relationships with these other organisms.

Our bowel flora has always played a critical role in

allowing humans to change environment and diet.

This may include the breakdown of food-stuffs that

would otherwise be indigestible, allowing us to

tap previously unavailable nutrient sources and to

colonise previously inhospitable territory. It may also

include the development of our brains and associated

cognitive development.

Despite this co-dependence on the micro-organisms

living within us, however, we have been cavalier

in our development of ever more anti-microbial

chemicals and anti-bacterial drugs. During the

twentieth century, our approach to illness sought

to eliminate the threat of viruses and bacteria by

either killing these agents (through medication and

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disinfection) or by manipulating the immune system

(through vaccination) to curtail and manage the

natural response to disease. The dominant narrative

has been that we can triumph over disease through

the elimination or control of its causative agents and

by clever manipulation of our bodily immunity. Yet we

have neglected the fact that our bodies have evolved

complex mechanisms for life that depend upon our

interactions and symbiosis with the viral and bacterial

agents that we are now trying to avoid or destroy.

Human immunity and respect for our neighbours

It is important to remember that the immune system

develops through its interaction with and control

of the body’s symbionts as well as with invading

microbes from outside the body. Our immune cells

are our relationship builders, key to sustaining our

reciprocal associations and the longterm viability

of our symbiotic condition. The prime locus for this

activity is in the intestinal tract. This long tube is

designed to remain firmly ‘outside’ while being inside

the body. The intestinal tract is open only at the top,

where food is ingested and the bottom where waste

is excreted. As such, it is designed to keep food and

harmful agents away from the rest of the body while

also making sure that we extract the substances

needed to develop and grow. As the new-born baby

ingests organisms in its milk, the developing immune

system has to manage the relationships with the

flora that come to live in the gut. The baby and the

immune system grow together; there is a constant

interplay between the bacteria and the immune cells,

and the former stimulate the immune cells, shaping

the way in which they recognise and respond to

forms of life, filtering the hostile from the benign and

beneficial.

Yet while we depend on the micro-organisms that

live inside us, the immune system is actually devoted

to ensuring that they stay inside the tube of the gut

without being able to penetrate the intestinal wall.

As a result, the lining of the intestine is covered in

a carefully maintained layer of mucosal protection.

Without it, the wall of the gut becomes vulnerable

to bacterial colonisation and the penetration of

chemicals and particles that should not be allowed

through to the rest of the body. Recent research

has highlighted the way in which immune cells in

the small intestine produce anti-microbial proteins

that keep the flora away from the surface of the

gut lining. When scientists have disrupted this

process in specially-bred mice, the gut bacteria

come into contact with the immune cells, causing an

inflammatory response. These anti-microbial proteins

are only just being explored, but they are also likely

to be playing a key role in modulating the flora that

come to be domiciled within the intestinal tract.

The political controversy that still surrounds the

work of Andrew Wakefield (the British medical

researcher who led the team who published a

research paper in 1998 that raised a potential link

between the Measles Mumps and Rubella (MMR)

vaccine and the development of autism) has stymied

the proper development of research into immune

inflammation in the small intestines of autistic

children. Wakefield and colleagues called this autistic

enterocolitis, and whether this is the correct label or

not, such processes are causing pain, gastrointestinal

disturbance and nutritional deficiencies in thousands

of children like Eric. Certainly, recent research that

looks at the particular species of bowel flora as well as

their by-products or metabolites (such as high levels

of propionic acid) finds that autistic children have a

different balance of flora in their microbiota to those

found in controls. There is speculation that this could

be due to the heavy use of antibiotics or a failure to

breast-feed, but Eric did not have antibiotics before

he regressed into autism and he was breast fed for

over a year.

As we outlined in the previous chapter, Eric suffered

with terrible bowel problems as he regressed into

autism, and this is common in children with the

condition. There are a growing number of studies that

look at the incidence of gastrointestinal problems in

children with autism. Although almost all of them

measure symptoms rather than the actual flora in the

gastrointestinal tract, and they each have different

criteria for recruitment into the study and different

9

methods for data capture and analysis, they all report

significantly higher levels of bowel problems than are

found amongst non-autistic controls. A recent review

of 11 different studies found that the incidence of

gastrointestinal problems varied, affecting between

17% and 91% of children with autism, but all of the

studies identified a higher incidence of problem than

was found in controls.3 While there is a desperate

need for more research, it is clear that many children

with autism suffer with bowel problems. This, in turn,

will be a reflection of the inability of the immune

system to regulate the flora found in the gut.

It now seems that particular forms of bacteria appear

in much larger numbers in the bowels of children

with autism than in those without the condition.

In the early 2000s, Sidney Finegold and colleagues

found an elevated presence of some species of

clostridia in children with autism. More recently,

others have identified the bacterium Sutterella and

Desulphofibrio as being present in the intestinal walls

of autistic children and as such, these organisms

will be triggering the body’s immune system and

causing inflammation at the site of the damage. In

addition, it now seems that this immune activation

is not confined to the original site and that the

immune messengers, or inflammatory cytokines,

can cause inflammation in the brain as well as the

bowel. Researchers have also found that these

elevated cytokines are particularly associated with

the children who develop normally and then regress

into autism and that the severity of the symptoms

positively correlates with cytokine levels. When they

have looked at the brains of deceased people who

had autism during their lifetime, other researchers

have found signs of neuro-inflammation in the cells in

particular parts of the brain.

Immune dysfunction and Autistic Syndrome Disorder

The reasons for the underlying immune problems that

trigger this condition are likely to include exposure to

pathogens in the womb or after birth. It has long been

known that viral infection can have a devastating

impact on immunity. Once infected with viruses like

influenza, HIV and measles, mammals are known to

be more vulnerable to secondary infection. Measles

– in both its wild and attenuated vaccine strains - has

been known to cause diseases of the gastrointestinal

tract, including inflammatory bowel disease, as well

as having profound immunosuppressive effects.

The fact that many – but by no means all – of the

parents of children with autism report that their

child regressed after their vaccination for Measles

Mumps and Rubella (MMR) is likely to reflect this

immune-reactive and suppressive effect. Our son

had a vaccination for Meningitis C on the same day

as his first MMR shot. Sometime later he developed

a high fever and a measles-like rash all over his body.

We assumed this was just a viral illness, and he slept

it off in a couple of days. However, he was never the

same again. The introduction of four viruses at once

could well be a contributing factor to explain why his

immune system was compromised such that it could

no longer regulate his microbiota.

Similarly, there are documented cases of children

born with physical and mental disorders after their

mothers had rubella during pregnancy. If a child

has a compromised immune system due to a viral

infection that is passed on by the mother in-utero,

encountered in the environment or injected via a

vaccine, this is likely to make it very much harder for

their immune systems to protect the integrity and

function of the body. While this is clearly visible in

relation to secondary infections that trigger some

form of immune response, it is also significant, albeit

less obvious, in relation to the regulation of the

bowel’s microbiota. It seems plausible that autism is a

product of a breakdown in our symbiotic relationships

in the gut, caused by changes in the immune system

once already impacted by a primary viral assault.

Administered in order to protect the body from

infectious assault, vaccinations could be eroding

the ability of the body to maintain the symbiotic

3 Buie, T. et al. (2010) Evaluation, diagnosis and treatment of gastrointestinal disorders in individuals with ASDs: A consensus report. Pediatrics, 125, S1-S18.

10

relationships needed for good long-term health.

Certainly our son deteriorated slowly after he had

the four viral vaccinations at once, and he completely

regressed after his MMR booster shot in the spring

of 2007 (when he was three and a half). In what

may be the greatest irony of the twentieth century,

vaccinations to protect us from the bugs outside our

bodies may well be deleterious to the balance and

management of the ones already inside us, thereby

undermining our longer-term health and well-being.

If someone has a compromised immune system,

likely due to exposure to pathogens and inherited or

acquired weaknesses in the bowel microbiota, they

could be vulnerable to the bowel flora disturbances

that can ultimately lead to something as serious

as autism. As such, we think that autism results

from a process whereby the victim might already

be vulnerable before their immune system suffers

viral assault and then becomes unable to regulate

the bowel flora in the gastrointestinal tract. When

this happens, some of the bacteria may be able to

penetrate the wall of the gut while the dysbiosis or

imbalances of the bowel flora will also impact on

the body’s nutritional status, further deepening the

damage being done to both body and mind.

As we outline in relation to our experience of treating

Eric in the following chapter, the breakdown of

complex carbohydrates, the absorption of B12 and

iron are all disrupted in a vicious cycle of decline,

further impacting on the core bio-chemical processes

on which the body depends. Once the immune system

is damaged, and the symbiosis with our microbiota is

disrupted, it impacts on the body’s nutritional status

and well-being such that it may be unable to recover

again. We now believe that autism is the product of an

immune dysfunction that cumulatively disrupts all the

major bio-chemical systems that facilitate growth and

cognition in the developing child. As we know only too

well, the end result is a child who hardly eats, rarely

excretes, barely sleeps, can’t concentrate, struggles to

communicate and is in absolutely no shape to learn.

While we call this autism, we are still at the frontier

of really understanding the processes behind the

condition. As parents, we can’t afford to wait until

we fully understand all the links in the chain and we

think that we now know enough to make a dramatic

difference to the health, well-being and mental

capacity of our children. We might not be able to undo

all the damage but there is a lot that can be achieved

as we outline in more detail in the following chapter.

��

Chapter 3: What can be done?

At the time of writing this pamphlet – winter 2012/3

– we are four years into our journey with autism. At

the start, we knew nothing about it, and even less

about the processes that we outlined in the previous

chapter. Like many parents in the autism universe,

we were given the diagnosis and left to find things

out for ourselves. While we knew that Eric was

sick, we had no idea what to do. What’s more, we

spent a fair bit of time trying to get help from the

National Health Service before we realised that it had

absolutely nothing to offer. There are few things more

frustrating than getting an appointment to see an

allergist, a gastroenterologist or neurologist, spending

hours outside their office while your autistic child

demolishes the toys and drives you and the other

patients to despair with their wailing, only to be met

by ignorance and what feels like a lack of concern.

Even before Eric was officially described as autistic,

we saw a leading allergist at St Thomas’ Hospital who

told us that the parents of children with behavioural

problems often hide behind ‘so-called food allergies’

as an excuse for the problem. We had gone expecting

the specialist to recognise the problem Eric had with

the digestion of milk and give us some explanation

for his eczema, only to find that our parenting skills

were in question. This doctor organised a skin test

whereby different substances were applied to Eric’s

arm with a little prick in the centre of each to see if

the body responded, but Eric’s immune system made

no response. He was not instantly sensitive to any

of the common substances applied to his arm. In his

letter to our GP, the consultant reported that Eric did

not have “the type of profile of a child whose eczema

is sensitive to food.”

When we later found out that Eric had autism, and

were reading parents’ stories about the particular

significance of wheat and dairy for the health of their

children, we decided to write this consultant a letter.

As we put it, we were concerned that there would be

“many other parents who notice the development

of bowel problems and reactions to particular foods

affecting their child’s well-being, skin and behaviour

well before realising that they are dealing with

autism. They may present at your clinic … Children

like Eric need intensive analysis of their digestive and

immunological systems to explore why they react to

particular foods … Eric now has more eczema than

ever and he regularly erupts in skin rashes with no

obvious cause. We feel that he is in need of just the

immunological panel tests and exploration of other

metabolic function that might have been triggered

by our visit to you.” He wrote back saying that he

was “aware of the rather controversial association

between delayed food allergies, GI [gastro-intestinal]

problems, and behavioural problems” but he was not

convinced there was sufficient evidence for making

this case.

Remarkably, our experiences with two teams of

gastroenterologists were no better than this. We

took Eric to a paediatric gastroenterology clinic at the

Chelsea and Westminster Hospital in February 2008

and were initially very excited to be offered an X-ray.

Eric had to swallow some tiny plastic markers four

days before the X-ray was taken. The resulting picture

showed these fragments to be distributed throughout

his gut, which was swollen with faeces from his ribs

to his rectum. The doctor confirmed constipation and

mega-rectum, and then prescribed yet more laxatives.

Over several visits to this clinic, and encounters with

several specialists (because you rarely see the same

person twice), no one explained why a four-year old

child could be so chronically constipated that nothing

came out of his bowel, and no further tests were

performed. When we reported that the laxatives

weren’t working and we had started doing nightly

enemas to get the bowel moving, we were advised

that when Eric got to an age when this would no

longer be feasible, it would be possible to do a small

operation to add a tap under the rib cage to flush

the gut from the top rather than go in at the bottom.

Incredibly, the only potential treatment was to inject

botox into the bowel muscle to help it relax or to

remove a part of the bowel. Eric was under-weight,

��

he wasn’t eating, sleeping or defecating, he was

suffering from eczema and neurological problems,

and the doctors seemed barely concerned. They

treated it as completely normal. To this day, we find

this extraordinary. What’s more, our own experience

of treating Eric, and the success we have had in

getting his bowel to work, in eradicating his eczema,

in helping him to grow, and most recently, in seeing

him learn, could be the basis of new treatments, and

yet us parents are generally patronised or blithely

ignored.

Over the past four years we have moved away from

the darkest part of the tunnel of autism. Through

reading and hearing about other people’s ideas and

experiences, and taking our own small steps into

different treatment possibilities, Eric is now healthier

and happier than he has been for years. At our last

parents’ meeting at his mainstream school, Eric’s

teacher and his two teaching assistants were thrilled

to report that Eric is now starting to write, that he is

moving on with his reading and counting (which is still

at pre-school level but had been static for years), and

perhaps most importantly, that he has been playing

with his classmates. While Eric is years behind his

peers, and regressed and/or failed to develop during

the years between his second and his eighth birthdays

(over two-thirds of his lifetime), he is now starting to

learn. This means that his brain is not permanently

damaged and it gives us great hope for the future.

Treatment phase one: Getting the bowel to budge

Since we started this journey we have had four

different phases of treatment. In the first phase (early

2008-late 2009) we tried to get Eric’s bowel moving

and given the failure of laxatives, we decided to try

using enemas. The results were amazing and we

saw an immediate improvement in Eric’s well-being.

His distended stomach started to shrink, he became

more interested in food and he stopped crying and

tantruming as much as he had. Most importantly,

we were relieving him of the impacted faecal matter

that had been stuck inside him for months. Over the

weeks, and despite our expectations, this nightly

ritual revealed that Eric’s poo was remarkably soft.

While we expected to find his bowel full of the hard

lumps that he had occasionally managed to produce

in the past – what we called his rabbit poos – we

found that his stool was soft but it still wouldn’t come

out on its own.

At the same time, we discovered the work of the

acclaimed Australian gastroenterologist, Professor

Tom Borody, who argues that soft-stool constipation

is common in people with bacterial change in

their gut. Borody has successfully treated patients

using antibiotics and probiotics to rebalance their

bowel and this chimes with the experience of other

doctors in the USA and more recently, in France. The

biochemist William Shaw has shown that children

like Eric tend to have high levels of a compound

called propionic acid in their urine and that this is

produced by some species of clostridia that live in

the gut. Armed with this knowledge, doctors in the

USA have been treating the clostridia with antibiotics

such as flagyl and vancomycin, while also advocating

probiotics to repopulate the ecosystem found in the

gut. When treated this way, the levels of propionic

acid fall while the presence of lactobacillus increases.

At the same time, many children experience a

subsidence in their autistic symptoms, and in a few

cases, they have lost their diagnosis altogether.

Mirroring this experience, when scientists have

injected rats with significant amounts of propionic

acid they display autistic symptoms: backward-

walking, paw-padding, wet-dog shakes and become

socially isolated, hyperactive and hyper-reactive. Once

the acid wears off, however, the rats return to their

normal sociable rat-like state, showing no signs of

lasting effect.

Treatment phase two: Antibiotics and change in the

bowel

After reading about this work and getting increasingly

frustrated that nightly enemas were not triggering

the self-generated bowel mobility that we had

expected, we started the second phase of Eric’s

treatment (late 2009-late 2010). We decided to test

Eric’s stool to measure his cultured bowel flora (via

a comprehensive stool analysis) and to analyse his

13

urine to identify any propionic acid (via a metabolic

analysis test). His stool and urine were Fedexed to

the USA and a few weeks later, we knew the worst:

Eric had very high levels of propionic acid (well above

the reference range) and no sign of any lactobacillus

growing in the stool that was cultured. Armed with

these results, we were able to find a private doctor

who was willing to take these test results seriously

and he advised using a very low dose of an antibiotic

to treat Eric’s bowel.

Just six days after starting on antibiotics, Eric sat on

the toilet and did a poo as if it was the most natural

thing in the world. We were over the moon. We

had waited more than a year for this moment. We

had almost stopped believing that Eric would ever

be able to poo on his own. In addition, he started

to change. Before, he had been constantly running

round in circles, flapping and clapping, making noises

and barely registering anything around him. After the

antibiotic, he sat down at the table and focused on

his food. His sleeping, eating and communication all

started to improve and he was a much calmer and

happier child. A big cloud was lifted from over our

heads. We could think about going away on holiday

without having to manage an enema every night and

we had a child who was no longer wasting away or

running us ragged all night.

During that time, we hoped and prayed that the

antibiotic treatment would trigger some permanent

change in the bowel. Given that the bowel was

working with treatment, we thought that this might

mean it could work without it in future. Yet every time

we stopped using the antibiotics, the constipation

and behavioural problems returned. Disappointed,

we had to look again at what we could do – not least

because we knew that antibiotics could never solve

the problem long-term.

Treatment phase three: Getting rid of the lead

Soon after the autism diagnosis, we had read about

the therapies that some parents were using to treat

their children for heavy metal toxicity. In late 2010,

we decided to explore whether this might be an issue

for us. We sent some of Eric’s hair away for analysis

in America and got the results just a few weeks later:

Eric had levels of antimony and lead that were off the

scale. A normal level of lead – if such a thing exists –

should be something less than 0.7 ug/gram and Eric’s

measured 4.960. (and the test results are included

at the end of this pamphlet). We had had our home

water supply checked as soon as we knew Eric had

autism and the water board had found that the levels

of lead were too high. While we’d changed the pipes

in early 2008, that was two years too late. At a crucial

stage of his life, Eric had been drinking, bathing and

eating food cooked in water that was full of lead and

two years later, the hair test showed this exposure.

We were back to blaming ourselves. Maybe Eric

had lead poisoning as a result of our moving to an

old house with lead water pipes and old lead paint.

If you look up the symptoms of lead poisoning on

Wikipedia you certainly find that it describes the

symptoms of autism. When we last looked it told us

that: “The classic signs and symptoms in children are

loss of appetite, abdominal pain, vomiting, weight

loss, constipation, anaemia, kidney failure, irritability,

lethargy, learning disabilities, and behavioural

problems. Slow development of normal childhood

behaviours, such as talking and use of words, and

permanent mental retardation are both commonly

seen.”

We had to do something and in December 2010

we completed two urine tests which recorded the

presence of toxic metals in Eric’s urine before and

after using a small dose of a chelating agent called

Dimercaptosuccinic acid (DMSA). This agent binds to

heavy metals in the body, allowing them to be excreted

via the urine. Before using the DMSA, Eric’s urine

metals test again showed elevated levels of lead (at 7.1

ug/g creatinine when the reference range peaked at

5) but after taking the DMSA, he was found to have as

much as 22 ug/g creatinine of lead in his urine (more

than four times the top of the reference level). All other

metals, including antimony and mercury, were within

the reference ranges used in these tests.

14

Thus in the third phase of treatment (late 2010-late

2011) we worked with a private doctor to use a very

low dose of DMSA to remove some of this lead over

a number of months. Every weekend we gave Eric a

small amount of the DMSA every four hours during

the day, giving him a rest during the week. We re-

tested his urine after a few months (in April 2011),

again in September 2011, and again in February

2012. Over this time the lead excreted after DMSA

was as high as 42 ug/g creatinine (more than 8 times

the reference range limit), coming down to 16 ug/g

in September 2011 and 9.4 ug/g in February 2012.

Remarkably, as soon as we started getting rid of the

lead, we stopped having to use the antibiotic and Eric

was happily emptying his bowel every day. For the

first time in years, he also started to sleep all the way

through the night. The fact that the DMSA seemed to

work, that the lead levels were falling, and Eric was

getting better, meant that we felt confident enough to

stop using the DMSA.

Yet just when we thought things were going to keep

getting better, we had another bleak mid-winter

between 2011 and 2012. For no obvious reason, Eric

started to lose his ability to communicate and started

talking in an odd and unintelligible way. He re-started

the toe-walking that he had done years earlier

and no longer focused on the computer or books.

To our dismay, Eric became afflicted with terrible

constipation and it looked like we were going back to

where we had started, with a very sick child.

Treatment phase four: A more holistic approach

From early 2012, and faced with another regression,

we had to rethink. We reflected on everything

that had gone before and tried to develop a more

comprehensive approach. In the past, each phase of

treatment was helpful in tackling certain aspects of

the condition: controlling the bowel flora through

enemas, antibiotics and/or diet and probiotics; and

helping the body to get rid of heavy metals. But we

were doing these things separately and not together.

While one thing was helping, other systems were not

being supported. In addition, we had added basic

support like vitamins and cod liver oil, and always

used probiotics, but we were not very systematic

about it. We knew that nutritional support was

important, but we were rather ad-hoc. In hindsight,

we really under-estimated its importance. We

assumed that because Eric was eating a good diet, he

had to be getting a good balance of nutrition out of

that food. This was a very serious mistake.

In our fourth and current phase of treatment (early

2012 to present) we have focused much more on

the nutritional aspects of treatment. Given that the

human body is a composite of tiny cells that each

depend upon a complex of chemicals – and bio-

chemical processes – to function, it is absolutely

essential that the body ingests, produces and

processes the chemicals it requires. We have done

some testing that looks at Eric’s biochemical status

– measuring some of the chemical building blocks

that the body needs to function – such as amino

acids – as well as the products of some of the body’s

essential processes such as digestion, the cellular

energy (or Krebs) cycle and detoxification. As outlined

below, these test results have identified major

imbalances in Eric’s biochemistry and when we have

added nutritional supplements, the results have been

amazing. In the early stage of this phase of treatment,

we also went back to look at his gut and we have

been using some herbs that act as natural anti-

microbials and gone on to a much stricter diet that

avoids the ingestion of all complex carbohydrates. In

combination, the herbs, diet and nutritional support

have made a dramatic difference. Eric’s overall health

and mental capacity are now much improved.

To try to reduce the impact of bowel dysbiosis, we

have used the herbal combination recommended

by the American biochemist Dr Amy Yasko. This

comprises a daily treatment of a few drops of oregon

grape, myrrh, golden seal, oregano oil and uva ursi.

When we first used these in early 2012, they produced

a terrifying and yet miraculous effect. Within a few

hours, Eric started screaming and trantruming, but

he also started to regain his language. Within a few

days he was much calmer, started to go to the toilet

again and his language came back. For us, this was

15

like a light bulb going on and off, demanding we sit up

and take notice. Given that these simple herbs were

designed to target the bowel flora, we now felt more

confident that the bowel flora really were central to

his condition. We had been off down the toxic metal

track and important though it was, we needed to get

back to the bowel. Since then we have also tried other

herbs that are historically associated with treating the

gut, such as black walnut and artemisia.

This experience also prompted us to go back and

revisit Eric’s diet as a natural way to try to reconfigure

the flora at home in his gut. When Eric was first

diagnosed we had spoken to the nutritionist Natasha

Campbell McBride and read her book Gut and

Psychology Syndrome. Campbell McBride makes

the case for the Specific Carbohydrate Diet (SCD) to

restore the balance of flora in the intestinal tract.

This diet was developed to treat coeliac and crohn’s

diseases and involves removing all complex sugars

from the diet for a number of years and allowing only

fruit and honey (simple sugars) as sweeteners. The

SCD means stopping the consumption of all grains

and starches (wheat, oats, corn, rice, soya and potato)

and focusing on meat, fish, eggs, vegetables, nuts

and fruit. While you can eat home-made yoghurt and

cheese once the bowel has started to heal, we have

never managed to get Eric to tolerate dairy products,

and his diet has had to remain completely free of

these foods.

We know that this diet sounds like mission

impossible. It means that you remove the staple foods

of the modern Western diet and Eric – like the rest of

us – used to love his Rice Krispies, Frosties, crisps, rice

cakes, pasta and toast. In fact, given half a chance,

that is all Eric ever wanted to eat! He would stand

at the pantry door for much of the day, asking and

crying for the food we were required to drop and we

thought it would be impossible to do it for more than

a day or two at the most.

We were prepared for the return of screaming and

trauma and began the SCD diet over the Easter holiday

in 2012. We hid the forbidden boxes and packets in

the attic and went cold turkey on food. In the event,

however, it was remarkably – and unbelievably – easy.

Within a few days, Eric was tucking into large bowls

of organic meat and vegetable stew as though it was

the most normal thing in the world. It took just a

day or two for him to lose his cravings for complex

carbohydrates or starchy foods.

For the past twelve months, Eric has been eating a

diet fit for a king. He has ground almond and egg

pancakes, organic bacon, tomato, and a fruit and

vegetable juice for breakfast. He eats salad, ham,

chicken or tuna with a banana for lunch at his school.

In the evening, he tucks into meat, vegetables, fruit

and nuts. For treats we give him simple biscuits and

muffins made from ground nuts or coconut with fruit

and honey to sweeten them, or fruit on its own. Even

though we cannot eat out and have to take a camping

stove and a pile of organic meat and vegetables with

us whenever we go away for more than a day, this

diet is worth it. Eric’s improved health and well-being

are the reward.

So, in this fourth and current phase of his treatment,

Eric has had daily bowel movements (something

that we once thought would be impossible); he

eats more – and more healthily – than he ever has

done before; he sleeps for 10 hours a night without

interruption and is able to drop off on his own when

put in to bed; and most amazingly, he is making

progress in communication and learning at school. In

what seems like relatively simple steps, which don’t

require mainstream medicine, this formula has had

dramatic effects. But as well as the gut herbs and diet,

the additional ingredient has been a more careful

approach to nutrition.

In April 2102 we sent off another vial of urine to

the labs in America to look at Eric’s amino acids

– something that we hadn’t done since 2008. These

results brought us down to earth with a bump.

We found that most of these essential chemical

compounds were incredibly low. Eric’s levels of

methionine, cysteine, aspartate, glutamine, cysteine

and glycine (6 of the 20 amino acids required in

16

the body) were at or below the bottom of the

reference range. In addition, the levels of serine

and cystathionine, which are important precursors

to glutathione, the molecule that is critical for

detoxification, were also well below the reference

range. In contrast, the levels of 1-Methylhistadine and

3-Methylhistadine were way off the scale at the top

indicating muscle depletion in the body’s search for

nutrition. The analysis provided by the laboratory put

many of these findings down to a low dietary intake

and/or poor assimilation of folic acid and vitamin

B12, and the absence of sufficient vitamin B6 and

magnesium. We had been giving Eric vitamin B12

orally for years – since first testing his amino acids

in 2008 – but it was clear it had not been absorbed.

The test results exposed the extent to which Eric’s

basic biochemical pathways were not functioning

at an adequate level. Eric’s body and brain were

being starved of the essential nutrition critical to the

body’s energy, neurology and detoxification. Most

obviously, Eric was going to have very limited levels of

glutathione in his system, helping to explain why his

lead was so high. The test was a sobering reminder of

the importance of getting this right.

Since we got those test results in April 2012, we

have been using methyl-B12 and added the core

vitamins and minerals that his body was missing.

In August 2012, we tested again (and both sets of

results are reproduced at the end of this pamphlet).

It was found that Eric now had normal levels of

Methionine, Cysteine and 1-Methylhistidine in his

urine. The change was dramatic. Whereas the April

test had put his level of Methionine well under the

bottom of the reference range, the August figure

showed it to be right in the middle of the range. His

cysteine level had done the same. Eric’s biochemistry

was changing, and this was reflected in his better

functioning too. This matches the findings of

researchers lead by Professor Jill James in the USA.

She and her colleagues found that autistic children

had higher levels of oxidative stress than controls,

but when treated with folinic acid, trimethyl-glycine

(TMG) and subcutaneous injections of methyl-B12,

their glutathione levels returned to normal.

Our experience has inspired us to carry on trying to

improve Eric’s nutritional status and on that basis,

his biochemical functions and health. It has proved

to us that autism has an underlying physiological

explanation. We now know that improving the

function of the body can help to bring the autistic

brain back to life.

��

Chapter 4: What’s next?

Over the past four years there have been times when

autism felt like bereavement. The child you longed

for has been born and then mysteriously regressed

into a world of its own. The professionals tell you that

this is ‘just one of those things’ and your child will

simply be ‘different’. Yet living with a child who hardly

eats, sleeps or poos, is one of the hardest things you

could do. The acute anxiety and long-term sleep-

deprivation have taken us both to the brink of nervous

breakdowns, not to mention divorce. We have had

some really dark times and felt terrible rage at the

incomprehension, ignorance and apparent lack of care

displayed by the so-called professionals. Autism can

be a very lonely experience. As a parent you become

too exhausted for a social life and even if you do,

people look askance as your child screams incessantly,

destroys the toys and fails to make any friends. At best

you get sympathy and at worse, you’re condemned.

The only way out seems to be to stay hidden at home.

Although we have not discussed it here, we have

had difficult battles to get a suitable statement to

support Eric in school. We have had some remarkably

confrontational meetings with the Head Teacher

and Special Needs Coordinator at Eric’s first primary

school. They clearly didn’t want us there but were

unwilling to say so. The Head Teacher used the money

provided in Eric’s statement to employ teaching

assistants who could be moved or sacked without

consulting us. Eric would get to know a lovely new

assistant only to find that he – and we – had to build

a new relationship with a new person the following

year. It was dreadful going back to school after

the long summer holiday to find that Eric’s former

assistant had gone and we had to start from scratch

with a new one and a new class teacher as well. The

school were trying to manage us rather than focusing

on the needs of our son.

Learning to walk away from services that don’t

provide anything resembling adequate provision

in both education and health has been one of the

greatest lessons for us. What’s more, it’s allowed us

to find people who do want to help. More recently

we have been blessed to find a new school where

Eric is truly supported. The contrast is extraordinary.

Eric’s former teaching assistant – due to be sacked

at the old school – was employed by the new school

and would not be moved without consulting us. The

teachers are open to learning about autism and they

are always willing to try new ideas and techniques for

getting Eric to learn. Going to school is now a much

more positive experience. We have also been able

to increase the more specialist Applied Behavioural

Analysis (ABA) support that he’s having at home.

We have worked with a consultant and tutors to

develop an evolving programme that breaks down

tasks into their smallest parts and reinforces learning

by praise and incentives. The team bring a wind of

positive energy into the house and have been getting

him to work on his reading, writing, numbers and

communication skills. They bring out the best in us all.

So as well as the pain, autism has brought us great

rewards. Not only do we have a loving and much

treasured son, who brings us great joy, but we have

met a new group of positive people. More than that,

however, autism has also taught us to re-learn and re-

examine many of the most important things about life.

As we outlined in chapter 2, autism has made us

rethink what it means to be human. We can’t neglect

the flora that live in our bowels; they are essential to

our immunology and biochemistry, and on that basis,

they are part of what we all refer to as ‘human’. We

are a product of our symbiosis with the microbiota

that lives in our gut and we depend upon those

relationships. The twentieth-century model of health

and medicine that tries to contain and kill potential

pathogens is clearly outdated as it fails to recognise the

extent to which we are dependent upon them. It is also

outdated in splitting up the body into its constituent

parts. Autism shows that we need to treat the body

as a whole, including recognition of the symbionts

that live in our gut. It is also essential to look at the

underlying biochemical functions that might explain

18

particular problems we have. The range of difficulties

facing a child with autism are considerable and, as we

have described, these can include the gut, the immune,

neurological and detoxification systems. Contemporary

medicine might, at best, see a series of problems,

rather than the bigger picture that explains all the

parts. Bogged down in the different trees of their

specialisms, doctors can be unaware of the connections

that make up the wood as a whole.

In addition, doctors and many researchers are often

overwhelmed by the drive to find a drug-based

remedy for each separate disease. Looking at the

underlying systems of the body is rarely included in

their approach. The future must be to see if a disease

or dysfunction can be treated through nutritional

interventions based on biochemical analysis in a more

functional approach to health that seeks to help the

body to heal itself.

Our experience with autism exposes the need for a

new paradigm of health and disease. In a country

like the UK, people are living in better conditions

than ever before and we rarely fall victim to acute

infections as we did in the past, but at the same time,

we are plagued by chronic disease. Every classroom

has several children who have asthma, eczema and

allergies – not to mention the more serious problems

of ADHD, dyslexia, dyspraxia and autism. While these

conditions are treated as separate problems, unrelated

to each other, to us, they signal the underlying

pressure on the immune system. The increasing

incidence of bowel problems like crohn’s and coeliac

diseases, auto-immune conditions like arthritis,

diabetes and lupus, and cancers, are all signs of a

similar kind of dysfunction in the immune-biochemical

balance that we have described for autism.

Mainstream debate has yet to recognise autism as

being a matter of physical health. This has forced

parents like us to draw upon our own communities to

try and understand the condition and to share ideas

about what we can do. DIY health has forced us to

recognise the importance of functional medicine:

helping our bodies to heal themselves. Our hope

is that the parents of children with autism will take

heart from our story. We know that we can nurture

our children to much better health.

19

Key research resources

Ashwood, P. Krakowiak, P. Hertz-Picciotto, I. Hansen,

R. Pessah, I. and van de Water, J. (2011) Elevated

plasma cytokines in autism spectrum disorders

provide evidence of immune dysfunction and are

associated with impaired behavioural outcome.

Brain Behaviour and Immunology, 25, 1, 4045.

Buie, T. et al. (2010) Evaluation, diagnosis and

treatment of gastrointestinal disorders in

individuals with ASDs: A consensus report.

Pediatrics, 125, S1-S18.

Finegold, S.M. et al (2002) Gastrointestinal microflora

studies in late-onset autism. Clinical Infectious

Diseases, 35 (Supplement 1), S6-S16.

Finegold, S.M. et al (2011) Desulfovibrio species are

potentially important in regressive autism. Medical

Hypotheses, 77, 2, 270-4.

James, S.L. et al (2004) Metabolic biomarkers of

increased oxidative stress and impaired methylation

capacity in children with autism. American Journal

of Clinical Nutrition, 80, 6, 1611-7.

Maynard, C.L. Elson, C.O. Hatton, R.D. and Weaver,

C.T. (2012) Reciprocal interactions of the intestinal

microbiota and immune system. Nature, 489, 13

September, 231-241.

Margulis, L. and Sagan, D. (2002) Acquiring genomes:

A theory of the origin of species. New York: Basic

Books.

The Economist (2012) The Human microbiome: me,

myself, us. 18 August, available from:

http://www.economist.com/node/21560523

(last accessed on 20.08.12)

Vaishnava, S. Yamamoto, M. Sverson, K.M. Ruhn,

K.A. Yu, X. Kroen, O. Ley, R. Wakeland, E.K. and

Hooper, L.V. (2011) The anti-bacterial lectin RegIIIy

promotes the spatial segregation of microbiota

and host in the intestine. Science, 334, 14 October,

255-258.

Vargas, D.L. Nascimbene, C. Krishnan, C. Zimmerman,

A.W. and Pardo, C.A. (2005) Neuroglial activation

and neuroinflammation in the brain of patients

with autism. Annals of Neurology, 57, 1, 67-81.

Rouse, B.T. and Horohov, D.W. (1986)

Immunosuppression in viral infections. Reviews of

Infectious Diseases, 8, 6, 850-873.

Slifka, M.K. Homaa, D. Tishon, A. Pagarigan, R. and

Oldstone, M.B.A. (2003) Measles virus infection

results in suppression of both innate and adaptive

immune responses to secondary bacterial

infection. The Journal of Clinical Investigation, 111,

6, 805-810.

Treating Autism and Autism Treatment Trust (2013)

Medical Co-morbidities in Autism Spectrum

Disorders: A primer for health care professionals

and policy makers. Available from internet, address

given below.

Williams B.L. Hornig, M. Parekh, T. and Lipkin, W.I.

(2012) Application of novel PCR-based methods

for detection, quantitation, and phylogenetic

characterization of Sutterella species in intestinal

biopsy samples from children with autism and

gastrointestinal disturbances. mBio, 3, 1, e00261-11.

Yap, I.K.S. Angley, M. Veselkov, K.A. Holmes, E. Lindon,

J.C. and Nicholson, J.K. (2010) Urinary metabolic

phenotyping differentiates children with autism

from their unaffected siblings and age-matched

controls. Journal of Proteome Research, 9, 2996-

3004.

20

Useful organisations and websites

Treating Autism is a parent-led charity devoted to

finding and promoting biomedical treatments for

children with autism. The organisation runs local

groups for parents and regular conferences to bring

parents, practitioners and researchers together. They

have an information-packed website:

http://www.treatingautism.co.uk/

Equivalent organisations based in the USA are:

Talk about Curing Autism:

http://www.tacanow.org/about-taca/

Generation Rescue:

http://www.generationrescue.org/

In relation to research into the origins and treatment

for the condition, the Autism Research Institute was

set up by Dr Bernard Rimland in 1967 in California and

it has been devoted to research and advocacy ever

since, http://www.autism.com/

More information about the Specific Carbohydrate

Diet can be found here:

http://gapsdiet.com/Home_Page.html

As it says on this webpage, Natasha Campbell

McBride developed what she has called ‘The Gut

and Psychology Syndrome Diet’ on the foundation

of the Specific Carbohydrate Diet (SCD) created by

Dr. Sidney Valentine Haas to heal digestive disorders.

SCD gained great popularity after a mother, Elaine

Gottschall, healed her own child and became an

advocate for SCD. Elaine Gottschall wrote the popular

book Breaking the Vicious Cycle. Intestinal Health

Through Diet but Campbell McBride’s book, Gut and

Pyschology Syndrome, is a very good introduction for

the parents of children with autism.

More information about the use of MethylB12 for

children with autism is available from one of the

earliest exponents of this treatment, a doctor called

James Neubrander based in New Jersey USA:

http://www.drneubrander.com/index.php

The Small Intestine Bacterial Overgrowth website

established by one-time IBD-sufferer, Dr Allison

Siebecker (from Portland, Oregon), has a wealth of

information about this problem and covers the use of

natural herbs to treat it:

http://www.siboinfo.com/

We have had excellent support to deliver a home

programme – with additional support in school using

Applied Behavioural Analysis (ABA) from the parent-

led charity, Peach:

http://www.peach.org.uk/

��

Eric’s test results

1 Elemental analysis of hair sample Date: October 2010 20

2 Urine toxic metals (before provocation with DMSA) (1) Date: November 2010 21

3 Urine toxic metals (post provocation) (2) Date: November 2010 22

4 Urine toxic metals (post provocation) (3) Date: April 2011 23

5 Urine toxic metals (post provocation) (4) Date: January 2012 24

6 Urine amino acids Date: March 2012 25

7 Metabolic analysis and amino acids Date: August 2012 28

MRN: 0001291380Sex: MDOB: October 13, 2003

CHAPMAN WILLSERICPatient: Order Number: D0130659

Completed: October 18, 2010

Received: October 13, 2010

Collected: October 09, 2010

Route Number: A0124680

Breakspear HospitalJean MonroHertfordshire HouseWood LaneHemel Hempstead, Herts HP2 4FDGreat Britain and Northern Ireland

<= 17.3 Aluminum 4.3

<= 0.016 Antimony 0.065

<= 0.080 Arsenic 0.076

<= 1.70 Barium 0.05

<= 0.022 Cadmium 0.015

<= 0.0005 Gadolinium <dl

<= 0.700 Lead 4.960

<= 1.32 Mercury 0.32

<= 0.55 Nickel 0.06

<= 0.0005 Rhodium <dl

<= 0.040 Rubidium <dl

<= 0.0004 Thallium <dl

<= 0.149 Tin 0.090

<= 0.0057 Uranium 0.0023

<= 0.178 Bismuth 0.039

8 5-29

0 1-9

© Genova Diagnostics · A. L. Peace-Brewer, PhD, D(ABMLI), Lab Director · CLIA Lic. #34D0655571 · Medicare Lic. #34-8475

8-136 Copper 9

0.01-1.58 Chromium 0.19

0.001-0.129 Cobalt 0.004

5.2-24.4 Iron 8.9

192-1,588 Calcium 66

<= 0.302 Lithium <dl

<= 174 Potassium <dl

11-122 Magnesium 8

0.04-1.93 Manganese 0.08

0.01-1.24 Molybdenum 0.03

104-206 Phosphorous 135

0.58-1.13 Selenium 0.50

14-426 Sodium <dl

0.01-4.40 Strontium 0.05

41,781-60,894 Sulfur 53,763

0.003-0.108 Vanadium 0.038

119-245 Zinc 166

1 Elemental analysis of hair sample Date: October 2010

��

2 Urine toxic metals (before provocation with DMSA) (1) Date: November 2010

URINE TOXIC METALS LAB #: U101201-2164-1PATIENT: Eric Trevelyan Chapmanwills ID: CHAPMANWILLS-E-00001SEX: Male AGE: 7

CLIENT#: 24146

POTENTIALLY TOXIC METALS

METALS

AluminumAntimony ArsenicBariumBeryllium BismuthCadmiumCesiumGadoliniumLeadMercuryNickelPalladiumPlatinumTelluriumThalliumThoriumTinTitaniumTungstenUranium

RESULT ∝g/g creat

1.7 0.3 323.1 < dl < dl < dl11< dl7.1 0.63.9 < dl < dl < dl0.1 < dl0.5 N/A 0.1 < dl

RESULT

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

REFERENCE RANGE 60

0.5

117

7

0.6

20

0.5

12

0.4

5

5

15

0.3

1

0.3

0.8

0.05

15

15

0.6

0.04

REFERENCE

WITHIN REFERENCE RANGE

URINE CREATININE

ELEVATED VERY ELEVATED

Creatinine

Comments:

mg/dL

82.3

RANGE

25- 180

2SD LOW 1SD LOW

SPECIMEN DATA

MEAN 1SD HIGH 2SD HIGH

Date Collected: 11/28/2010 pH upon receipt: Acceptable Collection Period: RandomDate Received: 12/1/2010 <dl: less than detection limit Volume: 40 ml Date Completed: 12/2/2010 Provoking Agent: Provocation: PRE PROVOCATIVE Method: ICP-MS

Toxic metals are reported as ∝g/g creatinine to account for urine dilution variations. Reference ranges are representative of a healthy population under non-challenge or non-provoked conditions. No safe reference levels for toxic metals have been established. V12

©DOCTOR'S DATA, INC. ! ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 ! CLIA ID NO: 14D0646470 ! MEDICARE PROVIDER NO: 148453 0001395

23

3 Urine toxic metals (post provocation) (2) Date: November 2010

URINE TOXIC METALS LAB #: U101201-2167-1PATIENT: Eric Trevelyan Chapman Wills ID: CHAPMAN WILL-E-00001SEX: Male AGE: 7

CLIENT#: 24146

POTENTIALLY TOXIC METALS

METALS

AluminumAntimony ArsenicBariumBeryllium BismuthCadmiumCesiumGadoliniumLeadMercuryNickelPalladiumPlatinumTelluriumThalliumThoriumTinTitaniumTungstenUranium

RESULT ∝g/g creat

< dl 0.1 243< dl < dl 0.29.7 < dl222.32.6 < dl < dl < dl0.3 < dl1.5 N/A 0.04 < dl

RESULT

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

<

REFERENCE RANGE 60

0.5

117

7

0.6

20

0.5

12

0.4

5

5

15

0.3

1

0.3

0.8

0.05

15

15

0.6

0.04

REFERENCE

WITHIN REFERENCE RANGE

URINE CREATININE

ELEVATED VERY ELEVATED

Creatinine

Comments:

mg/dL

105

RANGE

25- 180

2SD LOW 1SD LOW

SPECIMEN DATA

MEAN 1SD HIGH 2SD HIGH

Date Collected: 11/29/2010 pH upon receipt: Acceptable Collection Period: RandomDate Received: 12/1/2010 <dl: less than detection limit Volume: 40 ml Date Completed: 12/2/2010 Provoking Agent: DMSA Provocation: POST PROVOCATIVE Method: ICP-MS

Toxic metals are reported as ∝g/g creatinine to account for urine dilution variations. Reference ranges are representative of a healthy population under non-challenge or non-provoked conditions. No safe reference levels for toxic metals have been established. V12

©DOCTOR'S DATA, INC. ! ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 ! CLIA ID NO: 14D0646470 ! MEDICARE PROVIDER NO: 148453 0001395

24

URINE TOXIC METALSLAB #: U110503-2283-1PATIENT: Eric Trevelyan Chapman WillsID: CHAPMAN WILL-E-00001SEX: MaleAGE: 7

CLIENT#: 24146DOCTOR: Jean Monro, MDBreakspear HospitalHertfordshire HouseHemel Hempstead, HP2 4FD ENGLAND

POTENTIALLY TOXIC METALS

RESULT REFERENCE WITHIN VERY

METALS µµµµg/g creat RANGE REFERENCE RANGE ELEVATED ELEVATED

Aluminum 220 < 60

Antimony 0.5 < 0.5

Arsenic 230 < 117

Barium 11 < 7

Beryllium < dl < 1

Bismuth < dl < 20

Cadmium 0.3 < 0.5

Cesium 9 < 12

Gadolinium < dl < 0.4

Lead 42 < 5

Mercury 2 < 5

Nickel 13 < 15

Palladium < dl < 0.3

Platinum < dl < 1

Tellurium < dl < 0.8

Thallium 0.4 < 0.8

Thorium < dl < 0.05

Tin 1.6 < 15

Titanium N/A < 15

Tungsten 0.2 < 0.6

Uranium 0.08 < 0.04

URINE CREATININE

RESULT REFERENCEmg/dL RANGE 2SD LOW 1SD LOW MEAN 1SD HIGH 2SD HIGH

Creatinine 131 25- 180

SPECIMEN DATA

Comments: Results checked.Date Collected: 4/23/2011 pH upon receipt: Acceptable Collection Period: RandomDate Received: 5/3/2011 <dl: less than detection limit Volume: Date Completed: 5/7/2011 Provoking Agent: DMSA Provocation: POST PROVOCATIVEMethod: ICP-MS

Toxic metals are reported as µg/g creatinine to account for urine dilution variations. Reference ranges are representativeof a healthy population under non-challenge or non-provoked conditions. No safe reference levels for toxic metalshave been established. V12

©DOCTOR’S DATA, INC. ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 CLIA ID NO: 14D0646470 MEDICARE PROVIDER NO: 1484530001395

4 Urine toxic metals (post provocation) (3) Date: April 2011

25

5 Urine toxic metals (post provocation) (4) Date: January 2012

LAB #: U120201-2363-1PATIENT: Eric Trevelyan Chapman WillsID: CHAPMAN WILL-E-00001SEX: MaleAGE: 8

CLIENT #: 24146DOCTOR: Jean Monro, MDBreakspear HospitalHertfordshire HouseHemel Hempstead, HP2 4FD ENGLAND

TOXIC METALSRESULT REFERENCE WITHIN

µµµµg/g creat INTERVAL REFERENCE OUTSIDE REFERENCE

Aluminum (Al) 5.3 < 60

Antimony (Sb) < dl < 0.5

Arsenic (As) 27 < 117

Barium (Ba) 6.6 < 7

Beryllium (Be) < dl < 1

Bismuth (Bi) < dl < 20

Cadmium (Cd) 0.4 < 0.5

Cesium (Cs) 12 < 12

Gadolinium (Gd) < dl < 0.4

Lead (Pb) 9.4 < 5

Mercury (Hg) 1.6 < 5

Nickel (Ni) 9.2 < 15

Palladium (Pd) < dl < 0.3

Platinum (Pt) < dl < 1

Tellurium (Te) < dl < 0.8

Thallium (Tl) 0.3 < 0.8

Thorium (Th) < dl < 0.05

Tin (Sn) 0.9 < 15

Tungsten (W) 0.4 < 0.6

Uranium (U) < dl < 0.04

URINE CREATININERESULT REFERENCE

mg/dL INTERVAL -2SD -1SD MEAN +1SD +2SD

Creatinine 46.3 25- 180

SPECIMEN DATA

Comments:

Date Collected: 1/29/2012 pH upon receipt: Acceptable Collection Period: timed: 9 hoursDate Received: 2/1/2012 <dl: less than detection limit Volume: Date Completed: 2/2/2012 Provoking Agent: DMSA Provocation: POST PROVOCATIVEMethod: ICP-MS Creatinine by Jaffe Method

Results are creatinine corrected to account for urine dilution variations. Reference intervals and corresponding graphsare representative of a healthy population under non-provoked conditions. Chelation (provocation) agents canincrease urinary excretion of metals/elements. V13

©DOCTOR’S DATA, INC. ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 CLIA ID NO: 14D0646470 MEDICARE PROVIDER NO: 1484530001523

26

6 Urine amino acids Date: March 2012

LAB #: U120328-2269-1PATIENT: Eric Trevelyan Chapman WillsID: CHAPMAN WILL-E-00001SEX: MaleDOB: 10/13/2003

CLIENT #: 24146DOCTOR: Jean Monro, MDBreakspear HospitalHertfordshire HouseHemel Hempstead, HP2 4FD ENGLAND

SPECIMEN VALIDITYRESULT REFERENCE PERCENTILE

per creatinine INTERVAL 2.5th 16th 50th 84th 97.5th

Creatinine 68 mg/dL 25- 180

Glutamine/Glutamate 7.7 5- 160

Ammonia Level (NH4) 46400 µµµµM/g 16000- 75000

Specimen Validity Index

ESSENTIAL / CONDIIONALLY INDISPENSABLE AMINO ACIDSRESULT REFERENCE PERCENTILE

µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th

Methionine 5.4 12- 46

Lysine 100 55- 550

Threonine 110 80- 400

Leucine 44 20- 100

Isoleucine 11 8- 45

Valine 63 20- 94

Phenylalanine 59 40- 180

Tryptophan 80 35- 145

Taurine 750 200- 1600

Cysteine 20 25- 93

Arginine 19 12- 70

Histidine 810 520- 2100

NONESSENTIAL AMINO ACIDSRESULT REFERENCE PERCENTILE

µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th

Alanine 200 170- 800

Aspartate 5.6 12- 33

Asparagine 61 60- 360

Glutamine 300 300- 1200

Glutamate 39 10- 80

Cystine 25 28- 91

Glycine 730 800- 3400

Tyrosine 100 60- 225

Serine 200 200- 880

Proline 4.8 2- 90

©DOCTOR’S DATA, INC. ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 CLIA ID NO: 14D0646470 MEDICARE PROVIDER NO: 1484530001676

��

PATIENT: Eric Trevelyan Chapman WillsDOCTOR: Jean Monro, MDLAB#: U120328-2269-1PAGE: 3

DETOXIFICATION MARKERSRESULT REFERENCE PERCENTILE

µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th

Methionine 5.4 12- 46

Cysteine 20 25- 93

Taurine 750 200- 1600

Glutamine 300 300- 1200

Glycine 730 800- 3400

Aspartate 5.6 12- 33

NEUROLOGICAL MARKERSRESULT REFERENCE PERCENTILE

µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th

Ammonia (NH4) 46400 16000- 75000

Glutamine 300 300- 1200

Phenylalanine 59 40- 180

Tyrosine 100 60- 225

Tryptophan 80 35- 145

Taurine 750 200- 1600

Cystathionine 6.4 10- 43

68th 95th

Beta-alanine 2.2 < 22

UREA CYCLE METABOLITESRESULT REFERENCE PERCENTILE

per creatinine INTERVAL 2.5th 16th 50th 84th 97.5th

Arginine 19 µµµµM/g 12- 70

Aspartate 5.6 µµµµM/g 12- 33

Citrulline 1.3 µµµµM/g 1- 47

Ornithine 10 µµµµM/g 5- 55

Urea 730 mM/g 210- 750

Ammonia (NH4) 46400 µµµµM/g 16000- 75000

Glutamine 300 µµµµM/g 300- 1200 68th

Asparagine 61 µµµµM/g 60- 360

SPECIMEN DATA

Comments:

Date Collected: 3/25/2012 Collection Period: Random Methodology: LC MS/MSDate Received: 3/28/2012 Volume: NH4, Urea, Creatinine by AutomatedDate Completed: 4/3/2012 Chem Analyzer v3

©DOCTOR’S DATA, INC. ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 CLIA ID NO: 14D0646470 MEDICARE PROVIDER NO: 1484530001676

28

PATIENT: Eric Trevelyan Chapman WillsDOCTOR: Jean Monro, MDLAB#: U120328-2269-1PAGE: 2

GASTROINTESTINAL MARKERSRESULT REFERENCE PERCENTILE

µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th

Ammonia (NH4) 46400 16000- 75000

Ethanolamine 300 150- 580

Alpha-Aminoadipitate 96 8- 100

Threonine 110 80- 400

Tryptophan 80 35- 145

Taurine 750 200- 1600

68th 95th

Beta-alanine 2.2 < 22

Beta-aminoisobutyrate 90 < 470

Anserine 51 < 200

Carnosine 71 < 200

Gamma-aminobutyrate 1.5 < 50

Hydroxyproline 6.5 < 60

MAGNESIUM DEPENDANT MARKERSRESULT REFERENCE PERCENTILE

µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th

Citrulline 1.3 1- 47

Ethanolamine 300 150- 580

Phosphoethanolamine 73 46- 140

Phosphoserine 0.41 0.07- 1.2

Serine 200 200- 880

Taurine 750 200- 1600

68th 95th

Methionine Sulfoxide 2 < 15

B6, B12, & FOLATE DEPENDANT MARKERSRESULT REFERENCE PERCENTILE

µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th

Serine 200 200- 880

Alpha-aminoadipate 96 8- 100

Cysteine 20 25- 93

Cystathionine 6.4 10- 43

1-Methylhistidine 480 130- 430

3-Methylhistidine 1070 55- 900

Alpha-amino-N-butyrate 26 8- 65

68th 95th

Beta-aminoisobutyrate 90 < 470

Beta-alanine 2.2 < 22

Homocystine 0.029 < 10

Sarcosine 6 < 50

©DOCTOR’S DATA, INC. ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 CLIA ID NO: 14D0646470 MEDICARE PROVIDER NO: 1484530001676

29

7 Metabolic analysis and amino acids Date: August 2012

© Genova Diagnostics · A. L. Peace-Brewer, PhD, D(ABMLI), Lab Director · CLIA Lic. #34D0655571 · Medicare Lic. #34-8475

Malabsorption and Dysbiosis Markers

Cellular Energy & Mitochondrial Metabolites

Creatinine Concentration

Neurotransmitter Metabolites

Vitamin Markers

Toxin & Detoxification Markers

Metabolic Analysis Markers

Tyrosine Metabolism

30

© Genova Diagnostics · A. L. Peace-Brewer, PhD, D(ABMLI), Lab Director · CLIA Lic. #34D0655571 · Medicare Lic. #34-8475

Nutritionally Essential Amino Acids

Amino Acids (FMV)

Nonessential Protein Amino Acids

Creatinine Concentration

Intermediary Metabolites

Dietary Peptide Related Markers

Markers for Urine Representativeness

Oxidative Stress Markers Oxidative Stress Markers