Recovery with SCD

[Guest guest]

Roxanne Przybysz

Founding Director

Autism Canada Foundation

http://www.autismcanada.org/home.htm

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SEPTEMBER 23, 2002

COLIN’S STORY

HOW A COMBINATION OF FAITH AND SCIENCE SAVED MY SON FROM AUTISM

By R. Young

" What Appeared Moribund, will rise again, like the legendary Phoenix. "

The journey of my son’s life continues to be inexplicably entwined with

mine–his mother. It began one cold January day in the year 2000.

The spark of Colin–the beginning of his journey back from the dark

perplexing world of autism–began that day inside my heart, as I lay huddled

crying hopelessly on my dining room floor.

I lay wailing, as only a mother could, realizing that my heart and soul–my

beautiful blond haired, brown-eyed 3 _ year old pride and joy–had slipped

away from me into a silent puzzling world of his old. That day I learned

that, according to the top neurologist and autism expert at town

University, my son was a " high-functioning autistic " child, and would

probably be that way forever.

I kept crying, feeling sorry for myself–a single working Mom in the midst of

a divorce–all alone to mourn what I felt was all the hopes and dreams I had

of having a little buddy, a typically developing child. I didn’t know where

to turn. I felt defeated. I almost gave up and broke down, and accepted

Colin’s fate.

But then, I heard a voice. The message, whether it was from God or my

subconscious, was simple: " Put Colin first. "

It was all I needed to hear.

I decided at that moment that I was going to fight for my son at all costs.

I had faith that if no one else could help him (the medical doctors and

their offers to drug both Colin and us to cope with autism; the alternative

autistic " expert " doctors and their Gluten/Casein free diet, which had

already failed to save Colin ,or their expensive, high-dosage, vitamin

supplements which I refused to give my son)...then I would break out on my

own.

The next morning, I called Colin’s dad. " Pat, " I said, " I’m quitting my job.

I’m going to spend all my time, money, and effort on finding out what is

wrong with Colin. And when I run out of money, you are going to do the same

and support us until we’ve beaten this thing together. " There was silence.

" OK, " said Pat. " If anyone can save Colin, it’s you. I’m behind you. "

And so it was.

Like me, Colin’s dad had faith in our son, and also in me. And our journey

with Colin–a journey of recovery–began.

Faith and Science: Keys to Saving Colin

Often people ask me, " How did you know–autism is suppose to be for life–how

did you know that you could save him? "

I tell them, it was more than just a mother’s instinct. It was faith and

science.

I had faith that there was some reason why my son was slipping away. I had

watched my son suffer not only with the typical autistic traits (night

terrors, head banging, pervasive or obsessive play, eyes that looked away

into space, hyperactivity, speech delays). But I had watched my son suffer

through years of diarrhea and GI problems that no one could explain, which

doctors call, " autistic diarrhea. " Colin had suffered with loose movements

and diarrhea on and off since he was 11 months old. No one ever kne

w why and our pediatricians had always told us to just " cut back on the

fruit. " But when he was diagnosed with Pervasive Developmental Disorder at

age 3, I demanded that we see a GI doctor in addition to the bevy of

neurologists and therapists who were analyzing my son.

Despite Colin’s history of GI symptoms (including a protruding stomach, gas,

diarrhea, low weight, night terrors), not one of the GI doctors we visited

offered to do the traditional blood tests and colonoscopy that children

often get when they have GI troubles. This outraged Colin’s dad and me.

" How can our son be expected to develop typically if he isn’t absorbing what

he is eating? " I asked Colin’s dad. " And why is it so hard to imagine that

Colin may have a true GI disorder in addition to being autistic? "

I had faith that there must be a scientific reason why both my ex and I

dreaded feeding our child. " He’s just a different person depending on what I

feed him. I am almost scared each meal, " said Pat one day to me.

By that January 2001, Colin’s dad and I were just beginning to recognize the

true power of food. We put our son on the current alternative autism diet of

choice, the Gluten Free Casein Free diet, which is promoted to thousands of

other parents like us who knew our autistic children had " food issues. " But

that January, after being on the GFCF diet for almost 6 months, Colin was

still autistic. In fact, even though his night terrors stopped without

gluten, his obsessions and head banging got worse.

" If diet is the answer, then how come your son is on it (the GFCF) and still

autistic? " asked his neurologist that fateful day. " I know food is the

answer, " I responded desperately as my son banged his head on the doctor’s

stool. " I just haven’t found the right diet yet. I need to understand him

better. " I had the faith in food all right, but I was missing something

essential in the quest to understand my son’s mind and body: science. The

GFCF diet tells you if your child has something leaking in your body

(undigested wheat and milk protein), than stop eating those foods and you

may be cured. This made no sense to me. If my house has a leak and I stop

using the hot water...I still have a leak! I wanted to fix that leak.

Thanks to Colin’s leaky gut, he reacted to food as one might to a drug or

alcohol! When he ate rice, he ran around the room. When he ate sugary foods,

he sometimes bit his hand in pain. And when he ate any cookie–using one of

the many " wheat free/gluten free flours " on the market–my son lay down and

lined his cars up (pervasive play) and rubbed his belly and then had

diarrhea.

" Can’t you make a cookie that won’t make your son sick? " my mother asked me

once.

She was right. I felt like a failure for not knowing how to stop his pain.

But instead of guilt, I vowed to not give up until I knew what foods to feed

my son without hurting him.

And so, I decided not to just have faith and love for my son, but to listen

to what his body was telling me and let that lead me to a possible cure.

And so I began to document, yes–observe and note–my son’s life. I recorded

his food, his GI symptoms, his behavior, and his skin patterns.

After three months I analyzed my son’s " data. " I concluded that my son was

either allergic to all starches and sugars (everything from rice, potatoes,

white sugar, corn syrup, etc.) and most raw vegetables...or there was some

scientific explanation for all this. I also concluded that this undigested

food, was somehow affecting my son’s behavior, his level of functioning, and

in effect " intoxicating him " from within.

And then I found, thanks to a friend of mine who was a Celiac (who had also

never healed from the gluten free diet), a scientific explanation: The

original Celiac diet, a grain free, starch free, and complex sugar-free diet

that rebuilds a damaged gut and explains what foods to eat in order to heal.

And at age 4, my son began the Selective Carbohydrate Diet (SCD), the

original celiac diet. Thanks to this diet, Colin would be re-born into our

lives in a way we never dreamed possible.

COLIN’S STORY: EMERGENCE FROM AUTISM

(Part Two)

By R. Young

Since following the Specific Carbohydrate Diet, Colin, like a butterfly

emerging from a silent cocoon, has spread his wings and shown the beautiful

colors of his true personality to his dad, the world, and me.

This diet revealed the real Colin, who had been a prisoner of his body and

gut, trapped in a world of silence.

Just months before the change, I watched my beautiful 3 _ year-old playing.

In a moment of weakness, I felt sorry for him and for myself. Colin was

" playing " in the way a child on the Autistic Spectrum often does, stuffing

bits of paper into his toys by his big bedroom window.

" Mom, " I said over the phone, " it has suddenly hit me. I am so busy

researching Colin and caring for him, that I have little time for friends. I

am all alone here. " Silence on the other end.

Without thinking, I reached up to run my fingers gently through my son’s

thick hair. He pushed my hand away. I forgot he didn’t like to be touched

anymore.

" But you have Colin, " my Mom said. " He is your little companion now. Just

like you and your sister were with me, " she said.

" I know Mom. But even though he is here, he is not really with me. He doesn’

t talk to me unless he needs something ( " Juice. I want up. " ). Sometimes,

like now, he won’t even look at me unless I guide his chin. "

At a time when most kids were playing games, helping out with chores, and

asking a million questions, Colin was laying on the ground next to me--but

he seemed a million miles away. That was before the SCD.

After the diet, the change in Colin was dramatic.

Colin indicated in no-uncertain terms who he was.... his personality and

spark that makes him unique, emerged.

" Let’s color, Mom, " he said one day after preschool. He took my hand. This

time I cried tears of joy. This was a simple request–to play together–that I

had longed for. I felt connected.

Within hours, we had made a dozen pictures together. In my enthusiasm and

pride, I tacked a string across our kitchen, and hung the pictures up for

" Colin’s Art Show. " My ex-husband Pat bumped right into the art when he

arrived for a visit. " Who did this? " he asked. " Art show, Daddy! " cried

Colin. Pat looked at me and without words, we shared one of the proudest

moments together in our lives as parents. Our son was back.

By the simple act of giving Colin food he could digest,

scientifically-correct food that allows him to heal, he gradually came back

to us. Besides drawing and art, Colin loves the outdoors, the parks,

animals, and pretend play! Most children start doing early forms of pretend

play before they can speak. Colin, after starting the SCD, began at age

four.

One day at the park, Colin cried, " This is mommy’s house, " pointing to the

playground. " You’re the baby, I’m the mommy, " he insisted. " Stay where you

belong and sleep, dear. I love you. "

These were the exact words I say to Colin before bed. He was listening all

that time, storing the words in his brain until a day came that he could

tell me all he knew. Not only was my son doing pretend play with me, but

also he was displaying memory skills that I didn’t know existed.

Colin’s gifts emerged tenfold in his first year on the diet. He is kind,

intuitive, and extremely sensitive and emotional like his proud mom. Colin

is also very spiritual, talking often of God.

During the diet, we added special additive-free probiotics (L. Acidophilus

only) to his food. The diet requires probiotics (good bacteria that you may

see called ‘live active cultures’ on yogurt in the grocery store) or

homemade yogurt. The brain-gut connection became more apparent when we added

this probiotic to his diet. He began not only talking, but talking about

complex subjects such as life, death, and God.

" Does God have hair? " he asked me one day last fall. I smiled. Autistic

indeed, I thought, thinking back to the neurologist’s words. " Does he live

in Fairfax? " Colin persisted. " God lives in the sky and in our hearts,

dear, " I explained. " Close your eyes and tell me what you think he looks

like. " Colin closed his eyes. " No. No hair! " he said. We laughed, another

joy, now that he has a sense of humor in addition to his many gifts. Since

that day he often mentions God, and tells him " Good job, God! " when it r

ains or when the flowers bloom. Good job indeed.

Why this diet works

My ex-husband wanted to know why this diet worked. After reading Elaine

Gottschall's book three times (see reference below), and checking the

biochemistry, I was quickly learning not just about Colin’s gut but in the

science behind the diet " We are re-building his intestinal flora. We are

also cleaning out the yeast, bacteria, etc. that built up inside him after

years of having partially digested sugars and carbs linger in his body, "

Gottschall writes.

Colin's gut had been leaky. We were fixing the leak, rebuilding his immune

system and more.

Since the diet Colin has been on all home-cooked food that is " SCD

legal. " Although the diet is limited, Colin is now absorbing what he eats.

Our proof? Within a year, he has gained almost 9 pounds in weight and 6

inches in height. Today his appetite is voracious! He asks for more and more

" Colin food. " And illness is a thing of the past. He has only had one bout

of asthma (thanks to exposure to a cat) since this journey began. He rarely

gets sick. He is so strong now he even rides his bike!

Why this burst in strength and development? Why the transformation?

Food and good bacteria.

I believe, after years of steroids (for his asthma) antibiotics (for his

illnesses) and the standard American diet full of starch and sugar,

diarrhea, and a milk and egg allergy, Colin’s gut was a wreck. That combined

with the fact, that he may have had celiac disease all these years, led to

the ruination of his gut. As for his mind–that too was polluted due to the

state of his gut. For every neurotransmitter you have in your brain is

replicated in your intestine. To achieve true health, both must be in bal

ance, according to Gottschall.

How we detoxed Colin

Because Colin was addicted to the foods his body could not break

down–starches and sugars--we had to remove them from his diet. It was

difficult to switch from gluten-free waffles and rice crackers to meat and

cooked veggies. I started him on the diet’s intro menu (minus a few items)

and gradually began to add one food at a time to ensure that each food was

one Colin could digest.

" Time for breakfast, Colin " I called out happily. " It’s captain’s soup. " I

made homemade chicken soup for breakfast and put it in large captain’s mugs

to make it " fun. "

Colin ran past the soup and pulled open the fridge. He was looking for

gluten-free bread. Next, he pulled over a chair and peered into the freezer.

" Waffles! " he cried. " Want waffles. " I had thrown everything away. I had to

restrain him and explain to him that we were going to eat special food and

" fix his tummy. " I prayed he could understand. He cried, and struggled. I

felt horrible, but knew this was for his health, and I would not back down.

Breaking The Vicious Cycle: Intestinal Health Through Diet

By Elaine Gottschall

TO BE CONTINUED