STORIES & OPINIONS 3
Readers are invited to
contribute to this section. Please send your stories and opinions to suedengate@ozemail.com.au. State
whether you would like your name or email address used, or to remain anonymous.
Some names have been changed to protect privacy. My mailing address is PO Box
718 WOOLGOOLGA NSW 2456
[163] Great things
happening in our town now (June 2002)
Thank you for coming to our
town to spread the word. There has been some very positive feedback, and a number
of families are currently on elimination diets. One Mum is so excited. She, her
family and the teacher noticed definite behavioural changes in her 6 yo son
after just one week … One of our local bakeries is very happily baking failsafe
bread. He has a son who had some intolerances to some foods, so he is very
supportive and obliging … A parent on the school tuckshop committee (they
currently sell chips, lollies and soft drinks) has done a survey where a
majority of the replies supported some changes to a 'healthier' tuckshop. So
they plan to slowly remove and replace the most offending foods … Also we have
a butcher who is very happily making failsafe sausages for us … We seem to be
having some great things happening in our town now, and it is to you we send
our thanks. I feel we were just so lucky with the timing, that you were able to
fit us in, it must have been meant to be!! - parent from a small town which
recently hosted a failsafe talk
[162] 635: "I'm 56
and another victim of 635" (June 2002)
Congratulations on an
excellent site, I wish I'd found it a few months ago when I was scratching
myself until I was bleeding from the worst rash I have ever had. Just in case
some people think that food additives only affect children, I'm 56 and another
victim of 635. I believe that packet soup was what triggered the rash, then
things like BBQ chicken from Woolies, pizza and even KFC, although I can't
prove that it contains 635 (but I bet it does).
I must admit the one food I
miss has been my cup of hearty soup. I'd have it by itself or use it in
casseroles. I can't find a stock cube or stock powder that doesn't have 635 in
it.
The most amazing thing is
that neither my allergist nor my dermatologist had heard of 635. The rash just
faded away when I stopped eating 635. I could have saved the $1000 that I spent
at the specialists. My allergy specialist says I can now safely eat those foods
again because the rash has gone but I won't be charging into a 635 diet to see
if it comes back. Nine months of hell was long enough for me. - by email
[161] Sanity saver (June
2002)
I saw a story on your book
Fed Up about 2 years ago in
[160] Salicylate
sensitivity (June 2002)
My partner is sensitive to
salicylates. He has seen a dietician and a team of doctors for his illness, but
to be honest we have found 'The Failsafe Cookbook' and your website much more
helpful with the salicylate part of the problem. - by email
[159] Damaging our kids
(June 2002)
Thank you for such an
honest and up front book (Fed Up) about what things are damaging our kids. - by
email
[158]Chronic fatigue
(June 2002)
I'd known about elimination
diets for a while, but when a friend recommended your book "Fed Up" I
got a much better understanding of how it worked and was motivated to try it
for my Chronic Fatigue Syndrome - my brain is working much better now than it
used to. - by email
[157] The orange-picking
monster (June 2002)
I wrote to you several
years ago when I first read your book and put my son, now 10, on your diet. I
followed it for approximately a year when I decided that I wanted a
professional to confirm what I was doing. So I attended dietician appointments
with my son for about 6 months. I would have been better off doing it myself
all along. The dietician confirmed that my son had an intolerance to
salicylates. Then she proceeded to wean him onto them - every second day. It
only took one week for his teacher to come to me on bended knee asking me to
return to what I was doing with his diet, and to cut a long story short he was
banned from ever attending a school function again. I argued with the school,
saying that if he was an epileptic they would understand it was a problem out
of his control - bottom line - he is now allowed at school functions and we
have had two years incident free, until recently.
It seems my son can react
to salicylates just from handling them. We have a weekend house that has
prolific orange trees. One Saturday afternoon when my son was picking oranges
for the rest of the family to eat, he became "the monster". There was
no improvement and on Monday morning he fought with his sister about juicing
the oranges. At school he was worse than anyone had seen him before, running
away from the classroom. When he was found and taken back to class, he locked
the teacher and children out of the classroom. The deputy took him to her
office to try to calm him down (she is a believer in the diet) and claims that
he just continued to babble and talk gibberish. He was suspended from school
for two days after this incident. All his regular teachers are at a loss to
explain how this child who is by nature helpful, courteous and bubbly can
suddenly become this "monster". After the monster phase he became
very lethargic and fell asleep continually. He was still irritable and
altogether it took two weeks for him to return to his old self. - by email
[156] Unexplained
fatigue, dizziness (June 2002)
We are doing the
elimination diet to try and help my oldest daughter.. She is 8 years old. Her
main problem is that she has suffered from regular, unexplained and excessive
fatigue for several years. We have also recently realised that she suffers a
lot of dizziness and light headedness too. She has good days and bad days, as
well as long good stretches and bad stretches of 1 - 4 weeks. When bad she can
miss quite a lot of school, hates getting up in the morning, hates school, and
spends all the after school period on the couch, until bedtime. Other symptoms
which bother her are periods of excessive irritability, difficulty getting to
sleep at night, being very sluggish in the mornings, difficulty focusing and
applying herself, daydreaming and being slow to get anything done, being very
pale in the face at times, fainting (at sight of blood), periods which seem
like depression, and at times, poor appetite and feeling of nausea after
eating. It was only after thinking through everything written in Fed Up that I
realised she had so many symptoms. These things have become apparent gradually
since she started school, but seem to be trending to get worse. On the plus
side, she is very clever, has always put in a big effort at school and is
consistently a very high achiever, is well behaved, patient, sensitive,
thoughtful, kind, and hardly ever gets into trouble. In fact, one teacher
thought she was "too good" - which could make it hard for her to
stand up for her own needs.
She has had blood tests a
few times, which found nothing, but she is absolutely terrified of medical
procedures (and will faint) so we have chosen to explore dietary options. We
are in the second week of our elimination diet, it has been very interesting. I
think I believed nothing would happen. We took ages to get ready (mentally and
in terms of stocking the pantry) so we were additive free for a month or so
before starting. During this time she was gradually improving but nothing
drastic. On day 3 and 4 of elimination she "lost it" - picked fights,
became over emotional, almost hysterical, restless, teary, irrational, and
claimed we were all against her. I was a bit scared as this was not in the
least her normal behaviour. She also had some nausea. However thankfully these
withdrawals eased off by day 5. The first improvement she noticed was that she
didn't feel irritable any more. Then she started to say she had more energy.
She has clearly been getting more involved in activities and spending much less
time on the couch. She has been focused enough to do good piano practice, and
she has stopped saying she hates school. - by email
[155] A Brush with Pizza
Snack Biscuits (June 2002)
My sons are severely food
and chemical intolerant. Their diets are severely restricted, just to enable
them to cope with day to day life. Their adherence to the restricted diet
literally enables them to survive. We avoid additives in food at all costs, and
we avoid chemicals wherever possible as they affect the boys equally to the
wrong food choices. They are aged 6 and 3.
My eldest son has commenced
school and is in Year 1. Considering his dietary challenges, he copes with food
and school incredibly well – but there have been and will always be the
occasional slip ups. Pressure from peers is already impacting and will continue
to do so as he journeys towards adulthood.
Late in the Kindergarten
year, he was with some team mates after a Teeball game. He was eating his
customary rice and drinking plain water whilst the other kids were tucking into
soft drink and a box of pizza snack biscuits – the kind people might eat with
dip. He was fairly unfazed as he is used to it, but the problem kicked in when
he had finished – still hungry - and the others still had plenty to eat. He
resisted their offering and the temptation to indulge until they reached the bottom
of the box. It was then that he succumbed to the hunger and I daresay, the
curiosity, (he has never eaten them before!) and he ate some crumbs from the
box – less than would cover a 10 cent piece. He later remarked that he didn’t
even like how they tasted!
Within 3 hours, the
reaction started. He was due to go to a birthday party – I always stay with him
for moral support because he can’t indulge in what others enjoy at parties –
and as we arrived, the rot began to set in! He was no longer able to communicate
with me in the way he usually would. His responses to questions were more a
grunt than a reply. I had to physically manipulate his face to make eye contact
with him and get his attention – and his eyes were wild!
He generally perspires
freely even though he is only 6, but now he was perspiring profusely. His
shirt, hat and shorts looked like the ones on Pat Rafter after a 5 set Final –
and this is truly without exaggeration. He was soaked. He was moving in an
agitated manner- his actions were jerky rather than smooth, and he was lashing
out at things and people. He became surly and very defiant. He was irrational
when compared to his usual behaviours. He hurt 4 friends at the party in 4
separate incidents whilst playing tips on and around some playground equipment.
I had been observing and intervening – there was nothing malicious, but he had
lost his finesse and the ability to be able to judge the other kids level of
involvement. He had become face blind – oblivious to their anxiety and
distress, and unable to see that they wished to cease the game. His need to
continue the game was insatiable.
For the first time ever,
these kids were actually scared of him and what he was doing, and they thought
he had hurt them on purpose. He was at this point doing some real damage to the
fragile relationships he had worked so hard to develop. The area the party was
conducted in was also open to the public, and my son managed to get into 3
fights with slightly older boys he had never met before. In each instance, both
parties were equally at fault, however the new children seemed to take an
instant dislike to his overall behaviour and this was the impetus for the
conflict. He was now unable to make good judgements about his actions and he
took offence at the situation. Instead of altering his behaviours to become
more socially acceptable, he lashed out and hit the other child – and so the
fights began. My time was spent alternating between apologising to everyone
profusely, heading his ill-considered choices off at the pass and repairing his
crumbling relationships whilst helping out his inadvertent victims – his mates
were suffering his horrendous reaction to flavour enhancers, flavours and
preservatives vicariously.
Going home was no better –
we were only two hours into the reaction and things weren’t going to get better
in a hurry. I tried to keep him doing things outside to wear off as much energy
as I could. Something happened and he was hurt. I think he took a bump on a
tooth that was threatening to come out, but was nowhere near ready just yet.
The bump made the tooth a little looser and it bled. I tried to soothe him and
clean the blood without his knowledge, as blood worries him. It was no use
because he became hysterical. His hysteria was very different to his usual
teary fussing (as many 6 year olds do when in need of TLC). He began to scream
and squeal a very high pitched squeal, he was rocking and flapping, he was
panicking, he wanted comfort but kept pushing me away and he interspersed the
screams and squeals with frenetic pleas of ‘Help me! Help me!’ He was
inconsolable and it took me more than 1 ½ hours to calm him down to a
reasonable state. He then continued to rock and sob on my lap.
Without the pizza shape
irritants in his body, I would have been able to calm him right down within
half an hour and he would not have exhibited the rocking, flapping and
squealing behaviours (which are found on the Autism Spectrum along with face
blindness and tactile defensivity – not wanting his personal space invaded, oversensitivity
to touch, pushing me away despite wanting comfort). He also would not have
pushed me away after the initial pain subsided. Consequently, he distressed his
baby brother and his father – the whole house had been disrupted by the
ingestion of the miniscule dose of pizza shapes only hours earlier.
The next phase of the
reaction involved him not being able to go to sleep, and then once finally
asleep, waking all through the night. He finally succumbed to sleep at
He was awake at about
He also began to exhibit
physical symptoms today. He now had patches of eczema under his armpits – these
only ever appear when he is reacting to something – he had a pre eczema scale –
like ichthyosis - all over his torso that he constantly scratched at. He had
heartburn, his belching increased, he had wind that you could hear in his
digestive tract, he had ‘allergic shiners’ (large dark circles under his eyes),
he had greyish skin tone, he had a red burn mark with skin peeling off his
behind from the irritants passing through his digestive tract and burning him
as it went. There was nothing I could use to relieve his discomfort as nothing
would stay on his skin. These physical symptoms would remain until his body was
finally clear of what he had ingested.
Upon waking the following
day, it was still evident that the aggression was present, although a little milder
than yesterday. I managed to encourage him to have some solitary play in his
room. He was still irrational and oversensitive and not coping and lashing out.
By the time school began, he was in tears clinging to my legs. He was suffering
terrific mood swings and his anxiety levels had really increased – he becomes
very anxious when his body is compromised by the wrong foods or chemicals and
this directly affects his behaviours too. I let his teacher know and organised
to collect him early as I knew a whole day of school would be too much. His
ability to perform his work had significantly decreased compared to the week
before and he needed much more support to complete tasks. His behaviours in the
playground were more frenetic and wild, but fortunately he didn’t get into any
scrapes that might be finished physically.
In the afternoon, he
exploded again – tiredness and the pizza shapes a volatile combination. I rode
a rollercoaster of violence, verbal abuse, screaming, aggression, hugs and
apologies. It was all I could do to get the situation calm enough for us all to
co-exist when Dad got home from work. Unsettled sleep was still an issue. This
pattern of morning irritation, school, early pickup, irrationality, abuse and
calm continued for another 6 days before things significantly improved. It was
a hell of a long time to suffer for such a piddling amount of additive laden
Pizza biscuits!
Another unfortunate feature
that reared its ugly head during this horror period was a return to very
negative self image; calling himself stupid and an idiot, saying and believing
that no-one liked him and no-one loved him, and believing that his friends
didn’t like him anymore either. When he has a reaction like this, he believes
he is not a good person. This is a very heavy burden for such a small person,
but it has been a part of his reaction pattern since he began to speak. When he
was eating a lot more foods when very small - before we had pinpointed the
problem (and life was hell for everyone), he would sometimes self harm and
sometimes even say ‘I wish I was dead’. It is a very scary and affronting thing
to hear your two year old say, "I’m a yucky person! I wish I was
dead!"
I always take great pains
to point out the wonderful things about him and his achievements and I try to
provide lots of situations where he will feel success, but it is undermined
very quickly when something like the pizza biscuit incident occurs.
Oh, and what additives were
in the box? A combination of at least four glutamate flavour enhancers, some
colours, added flavours, vegetable fat (that is likely to contain one of the
harmful antioxidants but which doesn’t have to be listed because it represents
less than 10 percent of the final product), cheese powder (also usually has
added flavour enhancer in the manufacturing), spices… I think anyone reading
this will get the picture!
What can be learned from
this horrible but true story?
- Food additives DO hurt children.
- Food additives vicariously affect others.
- Possible reactions are many and varied. If you’re
lucky, you may only exhibit a few minor irritations. If you are unlucky,
it will affect your whole life until you can overcome the dosage.
- Physical, mental, social and emotional health can be
affected equally.
- Reactions are dose related. The more you have, the more
likely you are to suffer a reaction.
- Reactions are individual, and depend on your tolerance.
- Society eventually pays for the individuals who cannot
cope with the additives in their diet but are not aware of the connection:
mental illness, conduct disorder, depression, drug dependency, costly and
often ineffective medication to treat a sufferer's great variety of
symptoms, property damage, incidents of rage, family and relationship
breakdown, compensation paid to people who end up the innocent victims of
others who themselves are really the victims of the food industry… All of
this has a cost, whether just an emotional one, or a monetary one.
Incarceration of food ’victims’ is yet another cost – and one better spent
in prevention and better health outcomes for all.
Many of the additives now
permitted for use in our foods were not permitted as recently as 5 years ago.
If we didn’t need them in our food then, and they can have a harmful effect on
children and adults alike, then WHY are we allowing them into our food now?! -
Sheryl Sibley, ACT
[154] Baker's yeast is
failsafe (June 2002)
Three years ago, my son had
such terrible candida you could smell the yeast on his breath and his skin. We
learned to avoid yeast, almost as a reflex. It's a habit that's hard to
unlearn. But unlearn it we must, because yeast free breads are dangerous if you
react to amines.
My son reacts to amines. I
knew anything fermented was bad, and that foods cooked for long times are bad.
But I didn't know that the "alternative breads" fit this category.
The label says: wheat, water,
salt. It doesn't say how long the bread is baked (slow-rising),
it doesn't say there are
amines, and the bread doesn't smell or taste different. It's just bread, and
yet it's not! Alternative breads, made without yeast, are invariably
long-rising, via a fermentation process. They are high in amines and should be
avoided. I always thought wheat was bad, precisely because of these alternative
breads.
My son is happy to be back
on wheat and dairy again, as you might imagine. There's even a commercial pizza
he can have, Hungry Howies (may not be available in
And now, probably because
he is failsafe, yeast doesn't bother my son at all. No sign of candida. So we
are back on yeast. - Karl from the discussion group
[153] Nicholas: Our Six
Year Journey (June 2002)
Our family is what is
commonly referred to as a "blended family". When we were married in
January 1992, Steve inherited a "package deal" which included my two
children, Lauren and Mark, from my first marriage. Nicholas was born in October
1993.
Our six-year journey with
Nicholas began early in 1996 when he was almost three. We were living in Wagga
Wagga. Steve and I were in our late thirties, and Lauren and Mark were 13 and
10 respectively.
We are a Defence Force
family, which means we are required move around a fair bit. This also means
that we endure complications and added stresses that most non-transient
families can only begin to imagine.
When Nicholas was born he
came into this world in the usual way, a normal pregnancy, and no problems
during labour or childbirth. He was a completely normal child in every way
until around the age of three. He started to become difficult to manage from a
behavioural point of view.
I was 30 weeks pregnant at
that time, with Elise, and due to complications I was confined to bed for the
last 10 weeks of my pregnancy. Steve was not allowed to take leave so we had to
fly my mum down from
Elise was born in August
and things did not improve. I mentioned Nicholas’ behaviour to the clinic
sister when I took Elise to be weighed and measured, and she felt that perhaps
he was feeling neglected because his new baby sister was taking a lot of the
attention away from him. We enrolled him into preschool. We felt that perhaps
if he were to become involved in something special just for him, something to
improve his self-esteem, his behaviour would improve.
He settled into preschool really
well and thoroughly enjoyed it. He was always very well behaved at preschool
but the behaviour at home did not improve. This became the pattern of our lives
for the next six years. He became obsessive about little things such as his
bath. It was either too hot or too cold. It didn’t really matter what
temperature it was, it was just never the way he wanted it no matter what we
did.
We survived fairly well for
the rest of that year and remained in Wagga Wagga until the end of 1997.
Nicholas’ behaviour did not get any worse, nor did it improve. We told
ourselves that since we seemed to skip the terrible two’s that perhaps this was
just a bad case of the terrible three’s instead. I hasten to add that I did not
experience any of these behaviours with Lauren or Mark, nor did I go through
much in the way of the terrible two’s with them. Lauren and Mark were always
very well behaved both in the home, and out and about, so this was a whole new
experience for me.
At the end of 1997 Steve
was posted to
Nicholas started preschool
five mornings a week and he became very tired with no energy. We put the
tiredness and low energy levels down to the humidity and extreme heat of the
tropics and the fact that up until our move to
In March of 1998, I decided
it was time to take Nicholas to the doctor because he was now 3½, still a bed
wetter at night, and still no improvement in his behaviour. We were referred to
one of
Initially, the bed-wetting
was the bigger concern and the behaviour was secondary. Gradually, the
priorities were reversed. Nicholas’ energy levels deteriorated and his weight
loss continued. The dreadful behaviours worsened. As time went on all these
things became serious issues. The volume of urine each night was no longer
contained in the night nappy, and the behaviour went from bad to worse, to down
right disgusting, with many violent outbursts. He became more obsessive. He had
to have the yellow bowls and plates in our multi coloured dinner set, and he
had to have his shoelaces the exact same length. If he didn’t get his own way,
a huge tantrum would ensue.
Nicholas’ weight loss
continued and he was now looking so thin and unhealthy that he looked like a
prisoner of war. His energy levels were so low that he would be playing on the
floor of our living room and tell me he was tired. I would tell him to go and
have a rest but he didn’t want to. By the time I turned around to do something,
and looked back at him, he would be asleep on the floor mid play.
Our paediatrician decided
to try a medication called Periactin, which was supposed to kick start Nicholas’
appetite. Unfortunately it didn’t seem to work. Our paediatrician then decided
the behaviour might improve with a change in diet. He started to tell us about
the chemicals in food, both natural, and added. He had a basic knowledge of
this but decided to refer us to a dietician.
The dietician that we saw
also only had a basic knowledge of food chemicals. She did her best but really
couldn’t answer any of my questions and was of no real help except for one very
important piece of information. She wrote down the name of a local lady by the
name of Sue Dengate, whom she said had a support group for people like us, and
knew a lot about diet. She did not have a contact phone number or any other
details. She also recommended that I buy the book Friendly Food that was
recommended by RPAH. The book was about avoiding allergies, additives and
problem food chemicals.
I went straight from the
dietician’s rooms to our local bookshop where I purchased the Friendly Food
Cook Book. The woman who ran the bookshop asked me if I’d read the book Fed
Up by Sue Dengate. I hadn’t, and the store was out of stock. This prompted
me to try to find Sue’s phone number in the local phone book. Prior to
contacting Sue, I phoned my mum in
I eventually got my copy of
Fed Up and was shocked at what I read by both the natural and the added
food chemicals. Nicholas was much worse in
The biggest hurdle for me
in coming to terms with the failsafe diet was that I had to completely change
my way of thinking when it came to foods. I had been raised on a diet of fresh
fruit and vegetables and this was how we were raising our children. The obvious
additives and preservatives were things that I could comprehend very easily as
being "nasty" and I was more than happy to eliminate things like red
cordial and "junk" food, although we really didn’t eat a great deal
of junk food.
The most difficult thing
for me then, and even now, was coming to terms with the natural food chemicals
that seemed to be in just about every fresh fruit and vegetable imaginable. In
our early days of the failsafe diet, I went through a very real period of
mourning. I mourned the fact that my son could no longer eat many of the fresh
fruits and vegetables that most people ate and took for granted in their daily
lives. I also mourned the fact that I had to take away many of the things which
he truly loved, such as bananas, cheese, burritos, and much more. I was
concerned about his nutrition because this new way of eating did not leave him
with very much, and his weight from the age of three had always been a concern
to us.
I quickly discovered the
importance of reading the labels on everything I bought at the supermarket. It
is something that you have to be totally diligent about because what is
considered "safe" one week could be considered "unsafe" the
very next week. A simple thing like a change in the ingredients can make a huge
difference between a "safe" product and an "unsafe"
product. One mistake could be the difference between whether the diet was
successful or not.
In the beginning we made
many mistakes but with trial and error, and the guidance of Sue, we managed to
make our way through this dietary minefield and come to some semblance of what
could be called our new normality. A diet with very limited fresh fruit and
vegetables in comparison with our past life of a diet, which consisted of no
limits at all, when it came to "healthy" foods and fresh fruits and
vegetables.
We implemented the failsafe
diet (the elimination diet recommended by RPAH), and with Sue’s guidance we
managed to avoid a lot of the common mistakes and pitfalls. It is not an easy
diet to do as a beginner and so to have her help in this was invaluable.
Initially, the whole family went failsafe in order to support Nicholas. We
remained failsafe for quite a long time but eventually we all went back to our
normal diet, except of course for Nicholas.
We still don’t eat
chocolate or any of the stuff he really loves in front of him. We try to
"escape" if we feel the urge to be a bit naughty as we are very aware
of his feelings. Nicholas did show considerable improvement once we got past
the dreadful withdrawal symptoms, however, the improvement although noticeable
was not enough and so we continued in our search to get our lovely little boy
back. The calm, gentle beautiful little boy that we once had and were not
prepared to give up without a fight.
We noticed that Nicholas
used to get particularly irritable just before meal times, so when Steve
mentioned this to our paediatrician he told us to try an over the counter complex
sugar called Poly-Joule. We left the surgery shaking our heads in exasperation
and thinking "yeah right" that will work. We were extremely surprised
to discover that it did in fact work and he was the best he’d been in a long
time.
Nicholas had already been
tested for diabetes because his paternal grandfather is an insulin dependant
diabetic, and so are two of his cousins. The success of Poly-Joule prompted our
paediatrician to put Nicholas in hospital for two days and a night for some
specialised fasting tests. Bloods and urine were taken at specific intervals
over a 24hr period of total fasting except for water. At about ¾ of the way
through the testing Nicholas started to have a "hypo" which resulted
in an immediate halt to the tests.
The official results of
these tests were that Nicholas had a very rare form of Hypoglycaemia called
Ketotic Hypoglycaemia. We were then advised by our paediatrician to give
Nicholas regular doses of Poly-Joule so that his sugar levels remained stable
instead of up and down like a roller coaster. We then decided that the Ketotic
Hypoglycaemia was the main cause of these dramatic mood swings and behaviours.
We continued with the
failsafe diet as well as the Poly-Joule and again we saw some improvement, but
once again it was not enough. The disgusting behaviours continued and I again
contacted Sue in desperation. She suggested we implement 1,2,3 magic and very
generously loaned us the video. We were very impressed with this simple
technique so we decided to try it. The implementation of this behavioural
technique saved our lives, and to this day, continues to play an important role
in our lives. Once again, over time, we saw some improvement, and once again it
still wasn’t enough.
We again went back to our
paediatrician who decided to put Nicholas on a one- week trial of Ritalin. By
this stage we were desperate people and willing to try just about anything. At
the end of the week we again contacted our Paediatrician and told him that it
really didn’t seem to have any effect on the behaviours. We now know that
medication, like diet, requires fine-tuning, and adjustment to be effective. It
was unfortunate that the paediatrician did not mention this to us at the time.
We were, at this stage of our journey, very much in a period of trial and
error.
He referred us to a
visiting psychologist who said he’d like to hypnotise Nicholas and put Steve
and I on medication. I decided this was somewhat extreme to say the least and
informed our paediatrician that I would not be going back.
We resigned ourselves to
the fact that this was pretty much as good as we could get, although things
were still not good, and that is putting it mildly. The bed-wetting continued
and so we were referred to a visiting neurologist who asked us to measure the
capacity of Nicholas’ urine output. We did this and were told that he
definitely should have the capacity to be able to store his urine overnight. He
also recommended the bell, pad and alarm system to try and rectify the problem.
Our paediatrician decided
that Nicholas was too young for the bell, pad and alarm system, so he
prescribed Minirin, a nasal spray medication that is designed to stop
bedwetting. We were told to give him half the minimal dose for his age and
weight and after only three doses Nicholas was rushed from school to hospital
in an ambulance because he was having a seizure. Blood tests taken at the time
showed low sodium but nothing more. Seizures were one of the known side effects
of this drug but it was extremely rare. Nicholas was one of the rare ones.
During these years
Nicholas’ behaviour remained disgusting and it continued to be that way, but
only at home. He never showed any of the violence at school, and never at the
paediatrician, or our local GP. I would tell the doctors and teachers about his
behaviour at home, and they would look at me as if I was some kind of neurotic
woman. I began to feel as though I was from another planet. I also began to
doubt my skills as a parent.
Relationships in our house
were strained to say the least. There were times when Steve felt like leaving,
and there were times when I felt the same way. Fortunately, we never both felt
this way at the same time. I had many desperate teary phone calls to Sue during
this time and several similar desperate calls to our paediatrician. I enquired
about respite care because I felt I desperately needed a break. As a Defence
Force family we were completely on our own with no extended family for support.
Relationships between
Nicholas and our two teenagers were also strained. My eldest daughter wanted to
leave home because things were so bad and so desperate, and she’d had about as
much as she could handle. My eldest son just couldn’t stand Nicholas and every
time he was near him he would pinch, prod, poke, or annoy him in some way. I
would never catch him doing it but I would always catch Nicholas retaliating
and that would result in immediate time out for Nicholas.
In those days Nicholas had
such dreadful behaviour that I made the mistake of blaming him whether it was
his fault or not. It took me a number of years to catch on to what big brother
was doing. I remember one occasion where things got so desperate that I went
back to our GP and asked him what we should do. We had been going to our
paediatrician for over two years and still did not have the result we
desperately needed.
Our GP gave me this piece
of very important advice. He said, "love this child, he is not doing this
on purpose, no child ever wants to be like this". I have remembered this
piece of advice and over the years it has helped to keep me going. I kept
telling myself when things got rough that it was not deliberate, but that these
behaviours were uncontrollable.
Time out and behaviour
management strategies were effective up to a point, but Nicholas would never go
to his room voluntarily. He always had to be carried there, kicking and
screaming. I lost count of how many times he broke my watchband in the ensuing
struggle to get him up two flights of stairs to his room. The older he got, the
bigger and stronger he became, which made him much more difficult for me to
deal with. He was super strong when he was in full tantrum mode and I started
to have real concerns about how I would manage him, as he got older.
The years of difficulty and
stress really took a toll on us as a family. My enquiries into respite care led
to a dead end because there was none available to us in
I used to suffer badly from
hormonal, monthly mood swings with every menstrual cycle so I made the decision
to have a hysterectomy. I felt that if I was in one of my "moods" at
the same time Nicholas was having one of his violent tantrums, that this was a
combination, which was destined to end in disaster.
My GP was supportive of my
decision because I’d had four children, two girls and two boys, I had just
turned forty, and I definitely did not want any more children. My hysterectomy
was never considered to be a drastic measure on my part; it was simply
necessary for me to survive. It was, for me, the best thing I could have done,
and I have no regrets about that what so ever.
Nicholas in the preschool
year was never disruptive or badly behaved in that environment. He did not join
in very much with the other children, particularly in singing or dancing, or
anything where he had to really let himself go and have fun. He was always very
stiff and controlled. I remember seeing his teacher once grab both his hands
and physically move his arms to do the actions for a song they were singing up
on stage. He hated it. He showed very little in the way of emotions, he very
rarely smiled, and was very rarely spontaneous with anything, both in
conversation, and in the form of gestures. He had a marked delay in his speech
and I was forever explaining to people that if he did not answer a question
straight away, he was not being rude; it simply took a while for him to process
his thoughts.
In his first year at school
he was fortunate to have a teacher who was very supportive and who also had a
son with ADD. She asked me if Nicholas had ADD and I said no, our paediatrician
had never even mentioned this as a possibility. Nicholas has always been an
excellent reader, and very good at maths. His writing however, was very poor.
It was very difficult to read and I was worried at one stage that he might have
been dyslexic. He wrote a lot of his letters and numerals backwards or like the
mirror image. He never completed any of his written work. In the first year of
school this was not too much of a concern, and on his report it was written
that he is a good, well-behaved little boy who daydreams. His teacher suspected
processing problems of some sort and so it was recommended that we take him for
hearing and eye tests, both of which came back saying that everything was fine.
In his second year of
school his teacher had trouble getting him to stay on task. She tried keeping
him in at lunchtime; but he didn’t seem to care, and still did not complete his
work. I mentioned his inability to stay on task and complete his work to our
paediatrician. He was not overly concerned because Nicholas was so good at
reading and maths. Nicholas became very clever at covering up his weaknesses.
At the end of his second
year of school, our third year in
We were referred to a very
experienced paediatrician in Sydney who listened to what we had to say and gave
us two questionnaires to be filled out and returned. One was a parent
questionnaire, and the other was a teacher questionnaire. The result of these
questionnaires was that Nicholas had, in her opinion, ADHD. Our paediatrician
felt that Nicholas was not bad enough to require medication even although the
disgusting behaviours continued.
Once again, I had to
explain to yet another paediatrician that these behaviours were only ever
exclusive to us at home. I began to get the feeling that we were being
perceived as having some sort of bad home life that was causing these behaviours.
My gut feeling was and still is, that two things caused these behaviours. One
was diet related, and the other was frustration from learning difficulties at
school. I learned very early that if I allowed Nicholas to digress from the
failsafe diet that we were in for a very rough ride, always with violent
behaviour. School was something that I was unsure about until we started to
have huge battles over homework.
A month after arriving in
After one such session I
phoned our paediatrician in tears and said that I couldn’t do this for much
longer. I tried increasing the Poly-Joule and this seemed to have no effect.
Our paediatrician decided to admit Nicholas to hospital and re do the testing
for hypoglycaemia. The result of this was that Nicholas had now outgrown the
hypoglycaemia, which we were originally told he would outgrow at around the age
of nine. The decision was made to stop giving him the Poly-Joule.
We were then referred to
the enuresis clinic at Westmead Children’s Hospital to try and address the
bedwetting. Nicholas was 7½ by this stage. The specialist that we saw recommended
the bell, pad and alarm system. We had great success with this method and
within three nights Nicholas was dry for the first time in his life. He has
never wet the bed since.
Prior to leaving
Our paediatrician told me
that she believed only 4% of children were affected by food intolerances and so
I began to educate her on this matter. At every visit I would tell her "we
had pizza the other night, I let Nicholas off his diet and he went totally off
the planet". Another time we had Chinese take away as a treat for Elise’s
birthday, (something we hadn’t had for years), I let Nicholas off his diet and
within minutes of eating it he had thrown a major tantrum and broke one of our
kitchen chairs. After two weeks of swimming at school, on a Saturday at home,
he was told "no" to something and he broke a solid wooden door on our
entertainment unit.
Our paediatrician always
listened to me but I always felt that I was still being perceived as some kind
of neurotic woman who was speaking a strange language that no one else could
understand. I phoned her one day in tears after one of these episodes and said
that I was afraid that I might hurt him if things didn’t improve. She told me
she could arrange for respite care if I needed it. After that phone call, at
every visit, Nicholas was asked to take off all his clothes with the exception
of his underpants. He was checked thoroughly from top to toe. I know that these
children are considered "at risk of abuse" and I realise how close I
have come to hurting this child on a number of occasions, but I have to say
that this was one of the most humiliating experiences I’ve ever had to deal
with.
At this point, I started
asking questions like "who protects the parents?" It seemed that it was
okay for Nicholas to kick, punch and head butt me, but it was not okay if I
lost my temper one day and hurt him.
I remember sending him to
time out on one occasion and I was bending down holding one leg to remove his
shoes. He swung around with the other leg and kicked my nose. On another
occasion he threatened to break my glasses. Another time, he told me he was
going to break my arm and he kicked me so hard in the forearm that I actually
thought he did. I went to our local GP who said that it wasn’t broken but that
the deep muscle tissue was badly bruised.
There are other instances
where he has kicked and bruised my legs, and these have been recorded on my
medical documents. These dramatic violent outbursts were always followed by
periods of remorse where Nicholas would come to me crying and feeling bad about
whatever it was that he had done. I always took full advantage of these times
and we would sit down on the couch and have a cuddle and talk about it. These
times actually reinforced to him, that we did still love him very much, and
they reinforced to us that he truly didn’t want to be the way he was.
Nicholas behaviour
continued its decline. Who would have thought that this was possible? He spent
a lot of time in his room in time out. He would throw a tantrum for no apparent
reason. He would kick, punch, and head butt. All it would take was for us to
look at him in the wrong way, whatever the wrong way was, or to tell him
"no". It got to the point where every time he was sent to time out,
he had to be physically restrained otherwise there would be another hole kicked
in the wall.
Often it would take 20 to
30 minutes for him to calm down. At times I would have to lie on top of him on
the floor to restrain his arms and legs. He was always very strong during these
episodes and he could easily lift me off the floor with his legs. If I let go
to steady myself then he would be free to kick, punch and head butt.
Our paediatrician referred
us to the Department of Nutrition and Dietetics at Westmead Children’s
Hospital. We were concerned whether Nicholas’ very limited diet was adequate on
a long-term basis given that he had now been failsafe for four years.
We had to measure, weigh
and record everything he ate and drank over a three-day period. This included
his medication and brand names of the food that he was fed. This information
was entered into a computer and analysed, the end result being that with a few
minor modifications his diet was not ideal, but adequate.
Moving to
I decided to let him try
Helga’s bread because he liked it, and remembering that our paediatrician
believed only 4% of children were food intolerant, I thought I’d give it a go.
Nicholas’ behaviour got worse over a period of time so we made the decision to
get the bread that we knew was safe and that we knew he liked. We decided to
make the effort and do the one hour drive to the closest Brumby’s bread shop.
He started to eat his
school lunch again. Prior to this he was throwing it in the bin. We knew this
because we happened to be at school one day and actually caught him doing it.
Sausages were another problem. I had asked my local butcher to make up a
special batch to a recipe out of Fed Up. He assured me there were no
preservatives or additives in them. I was not totally convinced about this, so
we again made the decision to travel to a butcher that we know we can trust.
Unfortunately this was in the opposite direction to Brumby’s.
Our paediatrician decided
to refer us to a psychologist for a behavioural assessment with a view to using
medication. The referral stated that in her opinion the mother was maternally
depressed. I was pretty annoyed about that to begin with but after some thought
I decided she was right. Who wouldn’t be? Given the number of years and the
many stresses we endured during this journey. At this stage she still felt that
Nicholas wasn’t bad enough to need medication.
We had the assessment and
the psychologist initially thought that he had Aspergers Syndrome. She did a
questionnaire with us and decided that he did not meet the criteria. However
she did recommend medication, even if only as a temporary basis, to help
restore very fragile family relationships. An anti depressant was also
recommended and because of Nicholas’ delayed speech she asked that we see a
speech pathologist. Our paediatrician decided against an anti depressant for
Nicholas but agreed to try him on Dexamphetamine. Nicholas started taking
Dexamphetamine in July 2001.
Nicholas did not do well on
Dexamphetamine. He became very teary and emotional, more so than usual. He lost
weight more rapidly, which was not good as he was under weight to begin with.
He also had a lot of trouble getting to sleep at night; often he would get out
of bed and play with toys late at night, in the dark, before falling asleep out
of sheer exhaustion.
We persevered with
Dexamphetamine for a while because we wanted to give it a fair go and also
because we noticed that Nicholas’ written work had improved dramatically with
his homework. Prior to medication homework was like a battleground. He would
sit for hours and write three words, some days he would write nothing at all.
He would now complete all of his homework and sometimes even illustrate his
stories.
In the end, the weight
loss, lack of sleep and the emotional ups and downs just weren’t worth it so we
asked our paediatrician if we could try him on Ritalin. I had heard of some
excellent results with Ritalin and I wanted to give it a try. Our paediatrician
was somewhat reluctant to make the change because we were finally booked in, at
my request, to the Immunology Department at Westmead Children’s Hospital, to do
the double blind capsule challenges. She did not want to make any unnecessary
changes at this stage.
I had seen such an
improvement in Nicholas’ written work with the Dexamphetamine, and also
glimpses of a lovely little boy, in between the nasty tantrums, that I decided
to stand my ground on this issue. We started the Ritalin in November 2001 and
after a couple of "settling in" weeks Nicholas started to improve out
of sight. A month later at our next visit to our paediatrician, Nicholas’
weight had remained the same. This was a good sign because it meant he had not
lost any more weight. He had started to sleep much better at night and the
emotional ups and downs that he experienced with the Dexamphetamine seemed much
less once he started taking the Ritalin.
Our paediatrician
recommended that Nicholas should only take Ritalin during the school week,
never on weekends or during school holidays. This has proven to be very
effective.
At the same time we were
referred to a speech pathologist that also thought that Nicholas had Aspergers
Syndrome. In September 2001 she did a language assessment that showed that
Nicholas has high-level receptive and expressive language problems in the areas
of semantics, pragmatics, auditory processing and verbal reasoning. He relies
on visual information when listening to instructions, and finds listening
alone, without pictures, more challenging. He has poor semantic organisation,
including weak word finding skills. Verbal reasoning and critical thinking in
the form of problem solving is also a major area of weakness.
The speech pathologist still
felt that Aspergers Syndrome was a consideration and recommended that we see
another psychologist, one who is very well known, and who specialises in the
Autism Spectrum Disorders.
We saw this psychologist
who also thought that Aspergers played a part in all of this. He did the
Aspergers questionnaire with us and decided that Nicholas did not meet the
Aspergers criteria. However, he phoned me a couple of hours later and said he’d
had a rethink after reviewing the results. He now felt that Nicholas did have
features of Aspergers Disorder. Nicholas has now been diagnosed as having a
variety of developmental disorders. These include ADHD, high-level language
impairment, and features of Aspergers’ Disorder.
We implemented some anger
management strategies, and learned other ways of saying "no". We
re-trained ourselves to say, "not right now, maybe later" instead of
using "no" as an answer; this strategy is simple but very effective.
Other strategies included the use of social stories. These are stories that
Nicholas wrote with the help of the psychologist about what he can do when he
feels angry. We also used many types of small rewards to reinforce good
behaviour.
Our psychologist report
stated that Nicholas required Integration Support in the classroom to assist
attention, on task behaviour, to adapt tasks, and to specifically implement
social, communication, and empathy programs. This report assisted the school in
obtaining Government funding to provide some extra assistance for Nicholas in
the classroom.
We have been very fortunate
to have a school that is supportive of special needs children. They have placed
Nicholas in a class with a girl in a wheelchair who has an aide on a full time
basis. When the aide is not required to assist the girl, she is free to give
Nicholas whatever assistance he needs. He has an integration teacher who
assists him for one hour each week, one on one, and he also has access to other
integration teachers on an as needs basis. He has visits at least once a term
at school, from both his psychologist and speech pathologist, who will jointly
monitor his progress over the coming years.
The double blind dietary
capsule challenges were only ever done on weekends and during the Christmas
school holidays. Remembering that Nicholas only takes Ritalin on school days to
enable him to stay on task and complete his schoolwork. This enabled us to get
a very clear result and record only the food related behaviours. It also
enabled us to record the behaviours accurately without any other outside
influences.
We began the double blind
dietary capsule challenges at the beginning of December and they were completed
at the end of February. The results were as I’d suspected. No great surprises.
He is highly sensitive to MSG, calcium propionate, sodium benzoate, sodium
metabisulphite, salicylates, antioxidants and food colourings tartrazine,
sunset yellow, erythrosine and azorubine. It was a huge relief for us to
finally have an official, clinical diagnosis from the immunologist. These
results confirmed my suspicions in relation to food related behaviours.
Most challenges that he
reacted to were with violent reactions such as kicking, punching, head butting,
throwing things or ripping posters off the wall in his room. There were a
couple of challenges where he reacted with babbling and increased
hyperactivity.
It took me five years to
find the courage to do these challenges and when we were almost finished them,
Nicholas came to me, and said that he didn’t want to do any more because he
didn’t want to be naughty. He realises that some foods exacerbate his
oppositional behaviour. He also realises that some foods make him unwell.
We occasionally have
burritos for dinner, which is one of his favourite foods. On these rare
occasions I let him off the diet. He always has at least three or four, plain,
with no filling, except for maybe a small amount of grated cheese. At bedtime
when we are tucking him in and saying "goodnight" he often tells us
that he "doesn’t feel well". In addition to this, and because of the
additives and preservatives in the burritos, he becomes noticeably hyperactive.
Since Christmas 2001,
Nicholas has undergone a complete transformation. Time outs are no longer a big
part of his life. The delay in his speech is all but gone. He smiles, laughs
and does things spontaneously, something he seldom did before. He comes home
from school, takes his afternoon medication and sits straight down to do his
homework with no prompting from me and no arguing from him. Homework is no
longer the battleground that it once was. He completes all his written homework
and pretty much all of his written work in class.
He is developing a
wonderful sense of humour and is an absolute delight to be with. So far this year,
he has earned three merit certificates at school. He was voted as a school
representative council member for his class. He received a special smiley
pencil award for sitting up straight and behaving beautifully during assembly.
He was also Super Kid for the month of April, which earned him a Super Kid
badge that entitles him to politely go to the front of the queue at the
canteen. Unfortunately this was not very useful for him because he couldn’t
really buy much that is failsafe, however, it was great for his self-esteem and
he was very proud of this achievement. He also got to have morning tea with the
Principal. He was let off his diet for that special occasion and when he got
home, I asked him what he ate. He said, "I can’t remember, but it was
fun".
I cannot put my finger on
any one thing that we have done differently, for these wonderful changes that
have taken place. After five years of the failsafe diet, almost five years of
behaviour management in the form of 1,2,3 Magic, the final piece to our puzzle
has been medication, in the form of Ritalin. It is my firm belief that no
parent ever wants to medicate their child, especially one so young. We had
spent the past five years exploring and implementing diet and behaviour
management. During these years we saw some improvement but not enough for us to
survive. Medication was our last option.
In our case, we needed the
multi-modal approach, and no one thing would work without the other. The
combination of diet, behaviour management and medication was, and still is, the
key to our success. Diet for us was not enough, however, I believe that without
implementing the failsafe diet all those years ago, Nicholas would have needed
a much higher dose of medication. I also believe that his developmental disorders,
ADHD, high-level language impairment and features of Asperges Disorder would
have been much greater. His behaviour was often so violent that I was convinced
he would one day be in a juvenile prison, or worse.
In conclusion, all of
Nicholas’ violent behaviours and reactions were in my opinion, caused by two
things, food intolerances and the frustrations associated with learning
difficulties. The food intolerances are controlled with diet. Without diet, the
violent behaviours return. Medication helps Nicholas to stay on task, which
enables him to complete his schoolwork and homework. This helps to overcome the
frustration associated with learning difficulties.
Regardless of whether or
not Nicholas is taking medication, we know that if we allow him to break his
diet, and we sometimes do on special occasions, we can expect a return of the
violent behaviours. On these occasions behaviour management is still required.
We still have a long way to
go in terms of monitoring Nicholas’ education and assisting him with overcoming
these learning difficulties. We are fully aware that there will be some rough
patches as our son navigates his own path in life, but for now, the most
important thing for us as a family, is to finally have our loving, gentle,
caring, beautiful little boy back with us again. He is a pleasure to be with,
and a son to be truly proud of. Relationships during these past four months
have started to heal and we have finally found the light at the end of a very
long tunnel, something that for many years we thought we were never going to
find.
I would like to thank the
following people for their support and the individual roles they played in
helping us to achieve our happy ending.
Paediatrician: Dr Ross Diplock – for his
advice in trying diet before medication.
Author: Sue Dengate – for her
continued support with helping us to navigate the dietary minefields, and for
keeping us on track with her unfailing belief of foods and the way in which
they affect behaviour.
Paediatrician: Dr Patricia McVeagh – for
assisting us in the final stages of our journey, and the implementation of
controlled medication.
Consultant Psychologist: Lizette Campbell – for her
recommendations for speech therapy and medication.
Speech Pathologist: Philippa Greathead – for
her continued support, her referral to psychologist Anthony Warren, and for her
language assessment, which really brought home to us the many learning
difficulties that Nicholas was experiencing.
Psychologist: Anthony Warren - for his
continued support and for his report that was integral to obtaining Government
funding for extra assistance in the classroom.
The Failsafe Discussion
Group: This group
of people primarily discuss the failsafe diet, but also discuss many other
challenges faced by special needs families. Their wealth of information and
support knows no bounds. I would not have survived these
"challenging" years without these people. I have learned so much from
this group and we are all still learning. Together, we can all make a
difference, and we can all find that light at the end of the tunnel.
- Susan Bull, June 2002
[152] The first 19
months - Dani's diary (April 2002)
Birth - Chris is born nearly 2 months
early. We stay in hospital until Chris is a month old. Staff regularly comment
on the huge amount of crying he does and his restlessness. They put this down
to a consequence of being prem and assure me he will be more normal and settled
by the time he was due to be born.
2 mths - Chris doesn't settle - he gets
worse, screaming and crying all the time all day and night. Regularly passes
out from lack of oxygen. We try every colic remedy available - nothing helps. I
even try giving him a range of formulas on the doctor's advice - none of these
make any difference so after a few day on each I go back to breastfeeding.
2 1/2 mths - we notice Chris has a serious
hernia and needs an emergency operation - his stomach is split right across and
the muscles are trapping the arteries going to the testes - we hope no
permanent damage is done - staff and doctors tell me it was probably caused as
a result of the bad colic he has and him pushing in pain all the time. They
assure me he will be a lot better when his stomach heals and should settle down
- a bit of a contradiction but I go home and hope.
3 1/2 mths - I am totally exhausted and can
not cope at all anymore - sick of the lack of support and everybody telling me
that babies cry and I should just get over it. They all think I am a
hypochondriac. I start colouring behaviour charts showing his
screaming/crying/grizzling and sleep. I now know I am not exaggerating or
pulling things out of proportion - the charts show he is worse than I thought.
He is crying and screaming for about 18 hours out of 24. When he does sleep out
of exhaustion it will be for one or two hours only - generally throughout the
night. He rarely sleeps during daylight hours.
I ring my doctor in
desperation. I am afraid I might hurt Chris if I don't get some sleep soon and
get him sorted out. My doctor admits us to hospital. The staff take over Chris
and I get to sleep. Staff are amazed at the amount Chris screams - at first
they think it is just because he is away from me and home but I assure them he
is the same at home. His crying continues non stop even after being in hospital
over a week and in my arms a lot of the time. The doctor suggests we try the
elimination diet. We see our local dietitian. I start the diet. The dietitian
suggests we don't give Chris any solids for a while. I read somewhere that he
shouldn't get them until he is about 7 to 8 months old.
4 1/2 mths Chris is getting a lot better. He
isn't screaming near as much though is still crying a fair bit. We really
notice it when I eat anything on the no go list - we have to cope with his
screaming within 24 hours.
Chris's diarrhea is nowhere
near as constant. He is now sleeping for 4 to 5 hour blocks at night and
settling quickly after a feed and change. His body language now shows more
tiredness rather than pain symptoms when he is upset. His reflux has
disappeared.
5 1/2 mths My behaviour charts show that Chris
is improving a lot. He is now crying more than screaming. He is slowly getting
over all withdrawal symptoms of the many chemicals in the foods that I was
eating that were affecting him. I still can't get him to sleep during the day.
(The diet is not as effective as it should be because I am making salicylate
mistakes like drinking way too much lemonade and eating lots of carrots and
pumpkin - but I don't find that out for another 10 months.)
7 1/2 mths We start using management
strategies to try to get Chris to sleep during the day. Our doctor thinks he
can't sleep as he doesn't know how and is not in the habit. We succeed after a
week and now Chris is sleeping for 2 hours in the morning and afternoon. We
also introduce some solid foods. Chris's crying and grizzling improves hugely.
He is now actually appearing to be really happy sometimes.
12 mths Chris weans himself and has been on
Neocate ever since - other formulas such as soy cause instant unpleasant
reactions - back to no sleep and crying a lot.
14 mths Chris goes off all carrots and
pumpkin - makes it really hard for me to find foods to get him to eat as he
eats a huge amount of each of these. We notice a big change in Chris - he stops
grizzling altogether and is suddenly really easy to manage. He is a lot more
agreeable!! Have a look through my books and discover that pumpkin and carrot
are moderate in salicylates - I thought they were low!! No wonder he wasn't
100%. He was obviously getting too many salicylates!
19 mths Chris is now fantastic. We are
really enjoying him. He reacts to all the things avoided on the elimination
diet still so it is not much fun when we try challenges. We really pay for it -
he reacts differently with different chemicals. Salicylates, preservatives and
amines make him scream in pain and he gets diarrhea. Preservative 282 in bread
is by far the worst - within 3 hours Chris is screaming in agony and has
chronic diarrhea. When I was breastfeeding and ate 282 he would react within 12
hours. Colours make him really hyperactive, uncontrollable and he ends up
getting hurt. -
[151] "We were
doomed from the start when you look back on it" - Rita's baby (April
2002)
"We were doomed from
the start when you look back on it."
I grew up on the Great
Lakes in Canada. My father worked at Allied Chemical (located on the water) for
20 odd years. We ate fish that he caught in the Lakes two or three times a
week. I remember tumours being common in these fish in the latter days. I do
wonder what effect living in this environment and eating the fish has had on
the situation I am presently in.
I used to be a hairstylist,
but had to give it up due to reactions to colours, perms, allergy to latex
gloves and sensitivity to customers' perfumes. I also have hayfever. My husband
has asthma and seasonal allergies and his whole family has asthma.
From birth, our daughter
never slept more than 40 minutes at a time, day or night, and by the second
week she screamed most of the time. Nobody understood why she wouldn't
"just fall alseep" in her pram or her crib or the car. She was seen
by a quite a few doctors, midwives and early childcare nurses but no one did
much except to label it reflux and say it would correct itself. Tresillian
(mother and baby program) gave a different answer every time. Nursing Mothers
put me on a high salicylate diet and told me to feed her around the clock.
Needless to say she was totally out of sorts, crying all the time and
inconsolable!
Then an early childcare
nurse lent me a copy of Fed Up and sent me to a dietitian. I immediately
started on the elimination diet. My baby calmed down in the beginning, but it
wasn't a cure all. I was to the point of just eating rice, chicken and egg and
trying to keep my milk supply up to breastfeed. When my baby started losing
weight we went to RPAH and started on Neocate. It took a few weeks to wean her
but once she was feeling better she accepted it.
Once she was settled we
tried to slowly introduce foods from about 6 or 7 months. Except for a small
amount of potato and chicken she reacted terribly to everything. She would wake
all through the night screaming, refuse a nap and scream all day, refuse her
formula and food in general. She was irritable, had loose bowels several times
a day, and would be very aggressive.
I also try to stay away
from all chemicals in the house for cleaning. She has had terrible reactions to
paint fumes in the early days when I didn't realize how sensitive she was. We
were trying to renovate our house, that's on hold for a long while.
I had never heard of this
before. Allergies to nuts and things yes, but food intolerance and everything
that goes along with it, no
- Rita Mallet, NSW
[150] Insomnia a major
issue (April 2002)
I have been an insomniac
since I was 16. From my mid 20s it has been a major issue in my life. I have
lived on approximately four hours sleep a day. I have spent thousands of
dollars in trying to find the answer. I have seen naturopaths, homeopaths,
medical doctors, Chinese herbalists, acupuncturists. I have been to a sleep
centre where they tried to teach me to sleep. I have tried every imaginable
trick to try to sleep. For three years, I stopped drinking or eating anything
with caffeine. I would drink warm milk before bed. I would take a run before
bed. I would read a book before bed. Have a bath before bed. You name it, I
have probably tried it. By the time I turned 30, I decided that I had to learn
to accept my insomnia - 'this is as good as it gets' sort of thing. In the
worst scenario I would read till all hours of the morning. Having said that, I
had to also accept the fact that I was tired most of the time.
I had my son at the age of
31. He was a colicky baby, a terrible sleeper. He also had heartburn at night,
which his ped attributed to the fact that my son still breast fed at night, up
to the age of 25 months. I never understood the relationship between
breastfeeding at night and heartburn, so continued doing it. My main resource
and my inability to accept my ped's advise was due to my own travels to
primitive cultures, where I saw babies and toddlers breastfeeding constantly;
24/7 days a week and these babies were NOT colicky, did not suffer heartburn.
In fact, they seemed very happy, content, and rarely cried. When they did cry,
it was more of a whimper rather than the cries I hear in western society.
Being a 30 something Mum, I
also was fully aware of what sort of Mum I wanted to be. I had clear visions of
being a compassionate Mum; this entailed no spanking, no yelling, but rather
validating feelings, finding alternatives whereby both of us would be happy,
and in the worst scenario just accepting that my child and I would not always
agree, but I would still respect this difference rather than fight it. My son'
s temperament, however, tested me to the core and I failed often in living my
maternal visions. Yes, I have yelled at my son, yes I have spanked him (to
date, three times - he is 2.5 years old and each time I think about it, I do
cringe with disappointment with the evidence of my weaknesses). My son, from an
early age was high need and wanted full on hands on care, was constantly on the
breast, slow to unwind, wanted in-your-face attention, constantly in my arms.
In a nutshell I found him draining, and highly strung. I remember when he was
only five months old, having this real desire just to throw him across the room
and the reality of my feelings shocked me to my core. I am by nature sensitive
to other peoples feelings, gentle, gracious, etc. I took him to a sleep centre,
where the staff tried to teach me to help my son to fall asleep on his own and
all I kept thinking about was "seen this movie before". I thought I
was going insane; my son took two hours to unwind before he would fall asleep
and when he did, he would sleep only for one hour, waking up and then would
demand the breast to go to sleep again. After the sleep centre experience with
my son, I decided to go by my instincts; one thing I was sure about was that I
would never let my son cry it out, no matter what. Part of my reasoning stemmed
from 'what if he has the same problems as me? Maybe its genetics?' another real
reason for me was 'he must be waking up for some reason?'...to my mind, it may
be hard to fall asleep, but once asleep, a person wakes up for a reason...so I
decided that if my son woke up every hour, I would just learn to live with that
too and together we would get through it. I put up with it literally till my
son was 25 months old and by that stage, I am sure the night nursing was more a
habit rather than a real need, ie, whatever was causing the night waking as an
infant/baby, no longer existed by the time he was a toddler.
He was a very active little
boy, who seemed too busy to sit for any period of time. His thoughts also were
busy, talking constantly without taking a breathe. As a result, he always
looked like he was misbehaving because he seemed to have no physical self
control, although he was very gentle, loving and extremely aware of the needs
of others. But then, he would all of a sudden display vocal aggression, and
physical aggression, seeming to get pleasure in hurting. I could not understand
this Jekyll and Hyde personality.
Most people that I turned
to, either suggested more discipline, in the forms of spanking or severe
punishment. Others suggested that I was giving him too many sweets. Others
suggested that I train him at home, for instance sitting with him for ten
minutes today, then fifteen minutes tomorrow. Others suggested that my son and
I were too attached and he was playing on my weaknesses. Others implied that I
was not a consistent mother regarding discipline. But I saw my son for the
person he was. I had these real glimpses of his real personality. I thought
about taking him to a naturopath or a homeopath. I resisted though because my
real fear was that his behaviour would become an issue in our life like my
sleeping disorder became an issue in my life. Again, I turned to my own common
sense here and decided that I preferred to accept the package rather than fight
it all the time. Then I stumbled on your book at a health shop and bought it.
I have only read probably
one quarter of your book. But the next day I eliminated wheat, dairy and all
preservatives/additives. Within two days, the son that I only had glimpses of
suddenly emerged for a period of five consecutive days ... and I suddenly found
myself able to fall asleep in ten minutes. My son would still wake up, and I
would still respond in the same manner, but again, I would be able to fall
asleep without any problems. Day six was the day that I cried. I have spent the
better part of my adult life wanting to sleep and feeling tired. I have wasted
years of my youth thinking about sleep. I am at times angry and at times
relieved to just get out of the woods. I just can not believe that I no longer
have to describe myself as an insomniac.
My son now sleeps much
better, but I have realized only today that I think he is also salicylate
sensitive and probably so am I. Both of us, I realize now, demonstrate
aggression for unknown reasons. I can control that side of me because I am an
adult, but my son is more honest with himself and his world.
Today, my son was pushed
over the edge, so tomorrow, I am getting stricter with salicylate and amine
side of the challenges - but I feel good about it. I know where I am going now,
I have direction and that my undiscipled boy does not need more discipline. In
fact in the five days that he was his real self, I had absolutely no problems.
There was such harmony between us that my heart upon just writing that, is
swelling up ... more importantly, it has nothing to do with my adequacies as a
mother, or my sons personality. It is all external to the problem. This makes
me feel more confident than ever ...
I wanted to tell you my
story and to thank you from the bottom of my heart. If only someone had told me
at 16 what was causing my insomnia ... but then, I also know that my insomnia
stopped me from resorting to ignoring my son's cries and if I was not going to
find the motive of his behaviour and cries, I was just going to accept this boy
as he was ... for better or worse ...
I have learned one thing in
life and that is, that it is the worse situations that are character building
and through them I can choose the path I decide to tread ... I am just happy
that you wrote your book 'Fed up' and I am just happy that I chose to read it
... thanking you very very much ...
- Ingrid, Melbourne
[149] Taking back
control through diet (April 2002)
"I came across your
book by accident and decided to do the elimination diet before considering
drugs for our son, as I have been on drugs for years myself for ADD associated
with Tourette's Syndrome. As it turns out, I react VERY strongly to amines.
We've only tested salicylates and amines so far. I have been able to reduce my
medication by half. It's early days yet, as we've only been on the diet for 32
days and I daren't get my hopes up too much. My son didn't react to salicylates
or amines. He is much calmer on the diet; certainly not in need of medication.
We already know he can't tolerate gluten, as he has had a lifetime of diarrhea
until he went off it. It's exciting to be able to take back some control of
one's life through diet." - by email
[148] For the first time
in 31 years I feel normal (February 2002)
After ten years of trying
different diets - elimination, candida, vegetarian, allergy testing, you name
it - I tried your diet after buying your book and the results were amazing. Convinced
I was a chronic fatigue sufferer, I used to take more and more vitamins and
health foods, only to find I was sicker and sicker.
But now, for the first time
in 31 year, I feel normal. I have energy and have lost my coated tongue, mouth
ulcers, acne and negative attitude. I am actually a nice person! I can't
believe how even tempered and smiley I am when I stick to this diet. And my 9
year old daughter and 11 year old son are actually best mates. Before the diet,
at times my daughter used to be IMPOSSIBLE, no matter what.
I can't thank you enough
for having the insight, intelligence and love to dedicate so much time to this
insane practice of adding chemicals and preservatives to food - and then trying
(as the medical system does) to fix the resulting disorders with medication. -
reader, Vic
[147] A day in the life
of 160b (annatto) (February 2002)
" We first started the
diet as a family 2 years ago to support our baby when she was found to be
allergic to peanuts and eggs. My eldest daughter (10) had been diagnosed with
mild ADHD and her wild temper tantrums were controlled with sedative medications.
On the diet suddenly she became a human being with so much personality. Gone
were the temper tantrums, no more holes in walls, smashed toys and windows. For
the first time in all her eight years she was able to sit calmly and talk to
us. I cried with the realization of how much my little girl had been suffering
since birth just because I was feeding her the wrong food.
During the holidays, she
went to the local shop to buy a Peters dixiecup icecream. She found they were
all sold out so she bought a Cadburys icecream cup containing the dreaded 160b.
I was very upset when she got home and told me what she had eaten. I prepared
the family for the coming storm. One hour later it hit with a vengeance. I had
to stay in her room with her to protect her from hurting others as well as
herself - punching her head, head butting the walls, trying to scratch her skin
and flesh off and screaming all sorts of abuse. After an hour and a half of
this with patches of having to restrain her, we put her into a soothing bath which
usually means the worst of it is over. Not this time. She was worse when she
came out and none of us could control her. She tried to run away with only a
towel on. She got frustrated when she couldn't undo the gate as well as keep
herself covered with the towel. I had locked the back door to stop her from
getting inside to me and our three old as I could no longer physically control
her. I thought this would give my husband time to come from the lounge room to
help me with her. He arrived at my side just as she put her fist through our
porch window. We were all showered with glass and my daughter had dozens of
little cuts all over her arm. At this moment she lost the crazed look in her
eyes and seemed to go into shock. I showered the glass off her, cleaned and
dressed her wounds and spent the next hour with her curled up on my lap almost
empty of emotion. This episode has affected both my husband and myself in a
huge way. We no longer take ANY chances with anything creeping into our diet,
especially 160b. If we hadn't known the trigger of her psychotic episode we
would have without a doubt had many more days like this that I am sure would
have become too much of a strain on our otherwise very happy family. We owe you
much gratitude for the knowledge you have shared and continuing efforts to give
us up to date information." – reader, by email
Remember that yellow colour
annatto 160b is not used in Europe - instead they use the alternative 160a,
which is harmless. We are told it is too difficult and expensive to use.
European food manufacturers must be cleverer and more compassionate than their
Australian counterparts. Not everyone reacts as badly as this child - next day
irritability is more common. Headbanging, even in toddlers, seems to be a
feature of this additive. This episode demonstrates yet again that here is a
harmful additive with the potential to affect many others in more subtle ways.
160b can cause any of the usual reactions. We've even had a report of arthritis
associated with this additive.
[146] Restless babies
from tartrazine (yellow 102) (February 2002)
"Thank you so much for
the "Restless Babies" article (available on website
www.ozemail.com.au/~sdengate). I recommended it to a distraught mum in the USA
via a breastfeeding support bulletin board. She was shocked to discover that
the artificial yellow colour tartrazine (102) was hiding in many 'healthy'
foods. Within just two days of changing her diet, her baby had a normal
sleeping pattern. Not only that, but her two-year-old 'spirited kid' is much
calmer, and has stopped throwing incessant tantrums. Other board members have
benefited from the article, including one mum who recognised the frothy
'cappacino' poops mentioned. She had asked her pediatrician about it, but he
had no idea what caused it. Changing her diet to exclude tartrazine cured both
the frothy poops and the night waking."
Here are the foods that the
USA mother was surprised to find tartrazine in: potato bread, yoghurt, canned
soup, margarine and cough syrup. She was also eating, and feeding her two year
old, cakes/cake mixes/donuts/muffins/snack cakes, ice-cream, cookies and
crackers, drink mixes, lemonade, pudding mix, boxed meals, rice and pasta
dishes, cheesecake, butterscotch candy, jelly and chips all containing this
harmful additive.
[145] Bloating,
constipation and flatulence from gluten intolerance (February 2002)
"Thank you from my
family. It was because of Fed Up that we identified our gluten intolerance. My
husband has lost the dark circles under his eyes, no longer suffers bloating,
constipation and flatulence, and has a lot more energy. My 18-year-old son has
no mouth ulcers for the first time in his life. And on a very serious note, we
couldn't check out my husband's family history because they are all deceased.
Bowel cancer through two generations that we know of. One of his cousins under
40 years old had polyps removed. I've read that untreated gluten intolerance
increases the risk of bowel cancer by 40-100 times. This is a lot more serious
than 'smelling sweeter'!"
[144] A simple diet
change has made a huge difference to chronic fatigue (February 2002)
1) "I wrote to you in
July 2001 about my husband's immediate improvement to his chronic fatigue
syndrome after commencing the food lists recommended in your Fed Up book. It is
now 7 months on and I just wanted to let you know that we are still following
the diet, although not as rigidly. After having tried so many doctors,
remedies, medicines, alternatives (at high cost emotionally - when nothing
worked - and $$$ !! ) over the last 12 years for his CFS - I can't believe how
a simple diet change has made a huge difference to his (our) quality of life. I
wish I had known about this so much sooner and want to just say thank you so
much for helping us get there … When people comment on how my husband has been
looking so much better, we are the first to sing the praises of "Fed
Up" because that's how and where it all began, as simple (and as hard, to
start with, but worth it ) as that !!" - reader, WA
[143] How diet helped me
beat CFS - Emma's story (February 2002)
"I was diagnosed with
Chronic Fatigue Syndrome (CFS) in June 1998. At the time I was at university,
plus working morning and night teaching aerobics, and training for competition
aerobics every day. As well, I had an active social life. With glandular fever
five years before, I was probably overdoing it.
I was finally diagnosed
with CFS after seven months of severe weight loss and fatigue, and various
other debilitating symptoms including headaches, blurred vision, memory loss,
inability to sleep, and chronic bowel and stomach irritations. This diagnosis
came from a wonderful doctor who I still see regularly today. He was the only
doctor not to diagnose me with an eating disorder or a mental illness!
My weight plummeted from an
athletic 58kg to a frightening 32kg in the space of about 9 months. It seemed
the more food I ate the more weight I lost. Taking a gamble, my doctor sent me
off to the food allergy clinic at RPA in Sydney, and we found what was to be
the turning point in my battle with CFS. I was extremely sensitive to chemicals
both natural and artificial in foods and perfumed products.
I was put on an extremely
restricted diet of boiled white rice and white fish and within days many of my
symptoms had begun to disappear. I no longer suffered from stomach pains and
wind, and my mouth ulcers were reduced in number. For someone who loves cooking
and food this was very difficult to come to terms with but since I was facing
death if I kept going as I was, I was willing to give anything a go and stick
to it rigidly. The side effects of not being disciplined were too great and the
consequences too risky.
So I followed the chemical
free diet and within one month I had started to regain weight. It took about
four months before I could start introducing the most basic of items such as
green beans or potato and it didn’t take much to tip me over the edge, but
using the time I had (lots of it) I became very creative in the kitchen.
Within six months we could
all see that this diet and way of life was the way in which I would fully
recover. It has taken me until only a few months ago really to be able to go out
to a restaurant, for example, and eat a meal but even so the choices are
limited. To others I know my diet is still so restricting, but to me I am now
in foodie heaven enjoying the odd mango along with limited dairy products and
while I used to hate frozen peas I just can’t get enough of them now. Gluten
for me is still definitely a no go zone, but everything else I can cope with
most of the time in moderation. Hey, I even enjoyed frozen Christmas pudding
this year and felt great the next day.
I cannot say how much this
chemical free diet has helped me. I am now fully recovered from CFS after a
very long four years and am back to a healthy weight. I am married and have
started my own business called Floradiction - a wedding and event floral and
candle design business.
I will always be restricted
in what I eat but the positives far outweigh the negative effects that occur
should I stray too far from the ‘rules’. Moderation is now the key. I know what
works for me and that is important. My FAILSAFE recipe book is huge and I love
adapting ‘normal’ recipes to suit my needs. I haven’t had any complaints from
my husband Glen yet so things are looking good. Funnily enough when he has a
meal that is out of the ordinary from what we eat at home he always feels worse
for it.
I have experienced so much
with my illness, but I am actually glad it happened to me. So many good things
have come into my life because of CFS – my close relationships are even closer
and I have a greater appreciation for the simple things in life and what it
means to be able to get out of bed in the morning. I can now use my experiences
to help others who have CFS and help to promote a very misunderstood and still
poorly accepted illness. Raising the awareness of Australians of the serious
effects that food chemicals, both natural and artificial, can have on the
health of some individuals is also an issue close to my heart.
A