2004 DAN Conference and SCD- LONG

[Guest guest]

Another old post.... worth revisiting.Inspiring! -Patti

DAN Conference and SCD

These notes about the DAN conference were written by Raman Prassad,the

author of " .Colitis and Me " .

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view journal on white background DAN CONFERENCE 2004

" In science, a single observation may trump accepted truth . . . "

- Dr. Sidney Baker, introducing Elaine Gottschall at the Defeat Autism

Now conference

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Several months ago, Elaine Gottschall invited me to sit at her booth for

the 2004 Defeat Autism Now conference (DAN) which took place April 15

through 19 at the Hilton Conference center in McClean, VA, twelve miles

outside of Washington, D.C.

The following notes and observations are from and/or related to the

conference. I attended for the chance to meet with Elaine Gottschall and

Lucy Rosset*. (* Lucy has been using the SCD for a decade years--another

tale of diet sparing someone from the operating table.)

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Background on DAN In 1995, a group of thirty physicians and

researchers, held the first Defeat Autism Now (DAN) conference in order

to discuss treatment strategies. Approximately a year later they

released their first publication, spelling out what would become the

DAN protocol--biomedical methods for assessment and treatment of

autism. Since then, the DAN conference has continued to meet at least

once a year. As more people share information, the protocol has changed

and the number of conference attendees has increased. Now the

conference is held each Spring and Fall, with the latest taking place

this past weekend in a Hilton conference center approximately twelve

miles outside of DC. Instead of 30 people, 1,000 registrants attended,

including 100 health care practitioners. Sessions lasted from Thursday

through Monday with Saturday split into simultaneous sessions for

doctors, parents, and nurses.

Diet and Autism As far back as 19941, parents have implemented a gluten

free/casein free diet (GFCF) in attempt to alleviate the symptoms of

their autistic children. The resulting behavioral improvements led to the

GFCF diet being adopted by the autism community2. As a result, it is also

part of the DAN protocol. Indeed, a group of vendor booths at the DAN

conference pitched everything from GFCF potato chips to gummy bears.

However, although the GFCF diet has shown positive results for many, for

others, improvement soon plateaus--or never comes.

More recent research has hinted at why the GFCF diet has helped--autistic

individuals suffer from carbohydrate malabsorption and bacterial

overgrowth in the intestine3. It not uncommon for autistic children to

have severe bowel problems--including chronic diarrhea and inflammatory

bowel disease, such as ulcerative colitis.

Two years ago a group of mothers, with few options left, tried using the

Specific Carbohydrate Diet to treat autism at the gut level. As with

inflammatory bowel disease, the rationale of the diet remains the same:

treat the carbohydrate malabsorption and bacterial overgrowth by eating

what the digestive system is able to break down and absorb. This

simultaneously nourishes the body and " starves " the harmful bacteria4.

I knew that the number of people using the diet to treat autism had

steadily grown, with one e-mail list containing over 600 members but the

DAN conference was my first " live " exposure . . .

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DAN conference, Friday, 11am, Lobby of the Hilton Conference center The

conference sessions kicked off at 8:30am. Display booths from diagnostic

laboratories and supplement companies dominate the hallway--full color,

seven foot by 10 foot laminated displays with tables in front manned by

sales reps--some dressed in suits, most wearing khakis and polo shirts

emblazoned with their company names. Off of the lobby I locate a simple

folding table manned by Lucy Rosset and Jody Goddard. Two sets of books

sit on the table: Breaking the Vicious Cycle and Lucy's Specific

Carbohydrate Cookbook. Besides the books are pile of xeroxed handouts

containing the basics of the diet and web resources as well as notes from

parents who have the SCD for autism. In back of us, Kirkland booth has

set up a booth to sell GFCF food, including Just Pear--dried pears. To

the side, an over-muscled rep and a waifish women pitch packaged GFCF

food: chips, gummy bears, and soup.

I sit with Lucy. This is the first conference for both of us. I learn

that earlier in the morning Dr. Sidney Baker, one of the conference

founders, presented three case studies, including one of a long-time

patient, , " the kid who only got worse " . In his talk, he extolled the

SCD. During the last seven months, the kid who only got worse has been

rapidly improving.

Dr. Baker doesn't take the credit, saying 's mother tried the SCD

diet as a last ditch attempt to help her son. The diet's

effectiveness spurred Dr. Baker to prepare a lecture presenting his

findings with as well as two other children who have been doing

remarkably well on the SCD.

I've only been exposed to the lobby and the room with vendor booths but

I'm not sure where all the people are, there's only a few dozen

registrants wandering around, identifiable by the plastic enclosed name

tags hanging from their necks. One or two people at a time drift to the

table, several buying books, all taking handouts.

" Hey! Aren't you going to say hi? " I turn around to see Elaine. Elaine

greets me and gives me a hug. I glance over her shoulder, hundreds of

people stream out of the now open-doored ball room. The room is huge, a

hotel worker says it seats 2,000. I'm not sure if 900 registrants means

900 individuals or 900 families. Elaine asks if I heard Dr. Baker's talk.

But our conversation is soon lost--the booth is surrounded. Elaine is in

demand. People swarm around the table asking about the diet, buying

books, asking questions. The next ninety minutes fly by, every ten

minutes, a mother comes up, eyes tearing:

" I'm so happy! You helped my child so much! My child has become so much

better. Thank you so much. "

The exchanges usually end with a short question, a hug, a request for an

autograph, and a renewed surge of activity--people huddling around the

table. Not only has Dr. Baker talked about his success but these other

mothers are coming up to thank Elaine. Lucy and I glance at each other,

smiling. We're in the same boat, both saved from surgery, on the diet 10

years and 7 years, respectively.

Mothers aren't the only ones. Several health care professionals stop by.

Most of them began researching or treating autism because their children

have it. One, graying hair, clean cut, the straight shooter, thanks

Elaine and has a few questions, setting a time to talk later. Another

doctor, a jumpy dynamo, maneuvers in, and leans over the table toward

Elaine. His opening is something we've heard several times now:

" I had never heard of your diet. But a patient tried it and the kid kept

getting better. She gave me the book. "

Now usually comes the " thank you " , the brief emotional release. But not

this doctor, he's smiling but a bit of envy crosses his face, " It's so

simple! It makes so much sense! It's so clear! I don't know why I didn't

think of it! I should have thought of it! It surprises me that I didn't

simply see it! I should have done it! "

He moves on, replaced by a new type, identifiable by their T-shirts, the

Doctor Moms. They're a group of mothers who began using the diet within

the last year and have a local support group. Over their regular clothes,

they wear over-sized T-shirts. The backs emblazoned with " SCD Works!

Thanks, Elaine! " They move around with an assured look. As they come into

contact with people, the people turn toward us and head to the table.

Elaine smiles, happy, perplexed. " I can't believe this. Is this really

happening? " She almost didn't attend. She's been asked to conferences

before for IBD, she's always had to defend herself, under attack by the

gastroenterologists (GIs), by the IBD associations, by pharma lawyers. No

matter how many people she's helped, the mainstream IBD community won't

do research. However, a small but growing number of GIs have started to

use the diet for their patients and even themselves.

Within the last two months, a doctor and a GI resident, both with IBD put

in remission by the SCD, conducted a survey. They gathered the medical

records of fifty people diagnosed with IBD who used the SCD. With this

data, they submitted a concise article to the Lancet, asking for further

research. But that's the exception, most GIs still deny that diet can

significantly effect the state of the gut.

But at the DAN conference, the SCD and diet seems to be the talk of they

day. Dr. Baker's presentation, the Doctor Moms, the moms who found the

diet on their own, the doctors and nurses buying the book. . . and the

conference is just getting started. Tomorrow, Pamela Ferro will be

speaking at the Nurse's Training. She's a no nonsense RN with an autistic

child who was helped by the SCD. Now Ms. Fero runs a private practice

treating autism with the SCD. Her growing practice now employs someone in

the Cape Cod area as a fulltime cook--helping the mothers get started

with the diet.

Lucy and I are working fast to keep books in stock. I'm already opening

new boxes under the table. After lunch, the pace continues, with the

crowds surging out during session breaks.

At the table, we're under the skylights, square glass panels rise

upwards, forming a pyramid-like dome over our heads. The sun's heat

magnified, coming straight down on us. But we barely notice. During

lulls, Lucy and I exchange notes on the diet and our experiences with

colitis, and, I listen to her stories about selling her cookbook on

her website. To order you call a toll free number, which rings at

Lucy's house. She spends at least twenty hours a week on the phone,

taking orders, answering questions, dispensing advice. I'm surprised

to hear about the people who call, from all over the country, from all

over the world.

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Dan Conference, Friday 6:30 pm, Hilton guest room Dozens of people gather

in Dr. Baker's suite. I recognize several of the Doctor Moms. Name tags

identify another doctor, several nurses, a nutritionist with a master's

in public health. A bartender takes breaks to circulate around the room,

a platter of SCD hors d'oeuvres in her hand.

Dt. Baker bangs on a glass to get attention. We're here to celebrate, to

thank Elaine. But first he introduces Judy Gormand, the mother of ten-

year old , the " kid who only got worse " , Dr. Baker's most

challenging, unresponding patient. The room quiets, the facts

striking as she tells 's story:

Seven years of diarrhea. Doctor after doctor. The DAN protocol backwards

and forwards. Chinese medicine, cranial sacral therapy, flying to Ireland

twice to see a healer. In the summer of 2002, developed self-abusive

behavior, scratching, biting, banging his head against the wall. Always

covered in blood. Beginning to smash things, the remote control, then

thephone, the TV, glass. After five years of doctors someone scoped

him.Diagnosis: colitis and cryptitis. Prednisone stopped the self-abuse,

helped the gut heal. But he couldn't get off the drugs. Cutting down,

getting nearly off, meant going to the toilet 15 times a day. He ate one

meal every other day. Always sick. Teachers said they couldn't teach him.

He was in too much pain. He couldn't stay still. " All we can do is try to

make him comfortable in class. " In September 2003, the doctor said he had

to get off the prednisone. He risked developing steroid psychosis.

Hands holding drinks drop to people's sides. Judy continues. " I was

ready to take him, hold onto him, and jump off a bridge, end the pain

for both of us. "

Sitting in the house, in despair, she scanned the bookshelf. She saw

Breaking the Vicious Cycle, a book bought five years ago, on the advice

of a woman whom she ran into at a DAN conference. She opened the book

and read. And read. That night, she started on the Specific

Carbohydrate Diet.

Seven months later. is off of all meds. He has 1-2 bowel movements

per day. Hyperactivity gone. He can sit still. Learning has increased.

Teachers awed . . .

The room, the expensive suite, we are all in tears. Judy presents a

plaque to Elaine, the 83 year old fireball is speechless. We all applaud.

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Dan Conference, Saturday morning, Hilton conference center Lucy, Jody,

and I keep the table operating as a steady stream visits. Two of us are

there at any time. During one break, I peak in at a session, a doctor

drones on about vitamin this and that, each supplement description

starting off with statistics:

" It helped 51% of the patients, for 43% it had no effect, and 6%

become worse. "

Twenty supplements, similar stats. What do you do? Try one at a time?

Take everything? What happens when you mix supplements? I watch hundreds

of parents scribbling desperately in their notebooks. No wonder the

Doctor Moms look ecstatic at finding something that helps their children.

Every parent here is halfway to being a biochemist and part way to

bankruptcy--

supplements and diagnostic tests don't come cheap. But that doesn't

matter, you can see it, the concern. For each family at least one child's

health is at stake. Coming to DC for the weekend, paying hotel fees,

conference fees, buying books, supplements, talking, talking, taking

notes, learning from other parents, from the doctors. It's all worth it

for even a little improvement. The doctor continues.

" For CoEnzyme Q, we found that it . . . "

I head back to the table.

11:45am Lucy ran out of her cookbooks about an hour ago. She's been

keeping track of orders on slips of papers, dispensing cooking advice,

addressing patients questions about dairy. Less than half a dozen

copies of Breaking the Vicious Cycle remain. Within 20 minutes, the

rest are gone. Even the one display copy we keep has been claimed and

paid for--to be picked up at the conclusion of the conference.

The diet seems to be the talk of the conference. More evidence comes from

a supplement vendor, they approach the table twice, asking to " be taken

off the list " . It turns out that their product contains ingredients not

allowed on the diet. Someone posted this information to an autism e-mail

list. They want our group, sitting at the bare fold out table, to endorse

them. They man a flashy display booth which probably cost more than a

used Honda. The vendors ask politely, they plead, they look angry, but

the diet does not change. Elaine has spent the day attending sessions but

during breaks she's also been approached by supplement sellers.

" I empathize with these people. They're trying to make a living. I just

wish they sold refrigerators instead. "

People still come to the table. Information hungry. I catch another

vendor watching us, arms folded. Unhappy. Not many people come to his

booth--

his firm's products wouldn't be allowed on the diet. A few other vendors

pick up the SCD informational hand-outs, sit at their booths, and read.

The day ends well. Lunch out in the sun. Dinner with Elaine and Lucy.

Elaine happy but worried about her voice, she's been talking non-stop.

Although she's been attending sessions as a listener, people keep asking

questions. Tomorrow she's scheduled to speak at 8:30 am.

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DAN Conference, Sunday, 8:05 am, main lecture room Yesterday three

sessions ran simultaneously. Today, everything is in the big conference

space. I go early to mark a seat. A few dozen people are stand in the

room, scattered. The place can hold well over a thousand and it seems

empty. A man with a press badge and a camera stands in the back. He's

saying something about Elaine, how well she spoke at the Nurse's Training

the day before. Elaine went to listen to a session but so many people

wanted to ask her questions, they called her up to speak on the panel.

By 8:30 the room is packed. I had also saved Lucy a seat in the front.

One of the conference heads starts off, followed by Dr. Baker who starts:

" In science, a single observation may triumph accepted truth . . . "

He goes on to tell the story of the coelacanth, an ancient fish believed

to have died off 70 million years ago. It was a scientific fact--until

someone caught one off of the South African coast. He leads into autism

and then introduces Judy, 's mother. She talks about , the

autism, colitis, cryptitis, self-destructive behavior, always bleeding,

the whole thing. When she finishes, the room sobs.

" I'm up here today because I don't want anyone to go through what we went

through . . . Elaine is the ultimate mother hero . . . She did whatever

it took to heal her daughter . . . "

People wait anxiously, wanting to hear what she has to say. She tells

her story.

The daughter with ulcerative colitis who saw every doctor in Manhattan.

No hope. Age eight, right before the operation, her daughter waiting on a

gurney. A doctor walking by looks at Elaine, stops.

" What are you so upset for? Well, why are you upset, you're the one who

did this to your daughter. "

Angry. Flustered. Depressed. She took her daughter home. A friend planned

to come that night to comfort her. On the way up the stairs of Elaine's

apartment, the friend ran into an acquaintance. They talk. The

acquaintance says, " She should talk to my friend whose two celiac twins

were cured. "

Within 48 hours of this chance meeting on a staircase, Elaine was in the

office of Dr. Haas with all of her daughter's medical records. After that

the story becomes familiar. Daughter placed on diet. Daughter completely

regains health.

Du. Haas was in his nineties and passed away not long after. In the

library, Elaine finds books talking about certain foods which

shouldn't be given with upset intestines--such as milk. None of the

other city doctors mentioned anything about food. And here it was, in

books, some dated before 1900. Why wasn't food a consideration when

treating ulcerative colitis? Elaine's husband Herb appraises the

situation.

" I'm able to make a living for us. You'd better go out there and find out

what happened. "

That's when Elaine went back to school and picked up the thread of

knowledge which she has been passing on for forty years. Forty years!!

And only now beginning to get serious attention. I asked her about how

she did this for so long.

" There's only one way to go once you get on that trail. "

Her presentation moved to the science, to the two big screens, one on

either side of the podium, showing a Powerpoint presentation. The

microscope showing the injured intestine versus the healthy intestine.

The line diagrams in Breaking the Vicious Cycle coming to life. The thick

mucosal layer looking more threatening than Shelob's web in Lord of the

Rings. The science given dramatic photos.

When she finished, all rose for a standing ovation. Later, after the

presentation, a woman, attending the conference for the sake of her

autistic child, told us how her husband, a doctor, had decided to treat

autism full time.

As the next speakers started, Lucy, Elaine, and I stole away to the

restaurant, for a celebratory drink.

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Footnotes

1 The year 1994 comes from an account of the Gluten free/Casein free diet

found through autism.about.com. The account is available at:

http://members.aol.com/lisas156/gfpak.htm

2 http://autism.about.com/cs/gfcfdiet/a/casinfree.htm

3 http://www.breakingtheviciouscycle.info/autism/about_autism.htm

4http://www.breakingtheviciouscycle.info/beginners_guide/the_science_beh-

ind_ the_diet2.htm

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