Oct. 7Everything had been going so well for the Beck family. We had for a long time envisioned that moment when wed have a couple of little kids in the back seat of our car and take family trips and do family things and everything had seemed to just fall in step with what we had dreamed about, says Victoria Beck.
The younger of two kids, Parker Beck, was a happy, healthy 2-year-old. But not long after his second birthday, those smiles inexplicably began to fade.
He wouldnt look at us. He would shift his gaze, says Victoria Beck. He was irritable. He would throw his head back in screams high-pitched screams.
It seemed Parker no longer heard his parents voices. He stopped talking, stopped sleeping though the night and began oddly spinning. Although their pediatrician assured them Parker would get over it, the Becks sensed it was something more. They remember the moment when it first dawned on them that something was wrong.
We were both in Utah and we actually were both on our knees in front of a window, says Gary Beck. And we just hugged each other and said, No matter what, well find an answer.
They made a promise. That promise would lead them on a journey that would involve dozens of doctors and months of frustration as Parker got worse. Parker was showing all the symptoms of autism one of the most terrifying and hopeless diagnoses a parent can hear. Victoria remembers her doctor offered little comfort. He put his pen down and looked at me and said, Mrs. Beck, just let me tell you something. Miracles dont happen in these situations. If youre looking for something like a Lorenzos Oil, it doesnt exist. So why dont you stop wasting your time trying to find one.
At least 550,000 American children suffer from autism and the numbers are on the rise. Imagine your child disconnecting from the world a child whose eyes look, but dont see, whose ears hear, but dont listen, whose cries never end and doctors offer little help.
We dont know whats wrong
with this child, says Victoria Beck. Well call them autistic, and
well just kind of put them all in a box. And we dont know what causes it. We
have no idea how to fix it.
Making matters even worse, doctors have often blamed mothers for somehow causing their childrens autism.
Refrigerator mothers was the term that was being used, says Dr. Bernard Rimland, director of the Autism Research Institute, an internationally recognized leader in the field. He remembers how mothers were unfairly described. They were cold and dispassionate and really didnt care much for their kids, he says. And their kids decided that they would just sort of become autistic rather than having to interact with a mother who didnt care much for them. That was the theory and it was believed by close to 100 percent of the professionals who dealt with the parents.
In the Becks case, a psychologist
said that maybe they were the problem. He sat down with me and said, Victoria,
we have to figure out who we are treating here, you or Parker, recalls Parker.
And I said, I dont care who you think youre treating, Im
telling you theres something wrong with my son and either you jump on board and help
me, or Ill go out this door right now and Ill walk down the street, keep
walking until I find a doctor who will.
A KEY MEDICAL EXAM
It wasnt just Parkers behavior that was plaguing his parents. It was Parkers health. For two years he suffered constant diarrhea and vomiting. Then in 1996, almost two years after his parents say Parker got sick, they brought him to the University of Maryland medical system, where he underwent a test called an endoscopy to try and find out what was the matter with his digestive system. Ultimately the test told them nothing. It was just another frustrating dead end or was it?
A few days later, something completely unexpected happened Parkers diarrhea disappeared and he began sleeping through the night for the first time in two years.
Ten days after the procedure Parkers therapist called me downstairs and said, I think you better come and take a look at this, says Victoria. And Parker, who had been totally non-verbal, was now reciting flashcards as quickly as she could hold them up.
This is a boy who hadnt talked for two years.
She was holding up a picture of me and he was saying, Mommy. And then she held up Garys picture, and he said, Daddy, says Victoria. We were stunned.
They hadnt heard him saying daddy for a long time?
Never, says Gary Beck. He mumbled it before he lost his language, but this was as clear as could be.
For Victoria and Gary it was nothing short of a miracle. Their little boy was back, talking and listening. But they worried how long it would last. What had brought about the sudden, wonderful change? Could it have been the test at the hospital?
We asked the hospital to tell us exactly what he was given, says Victoria. Give us the dosage of the anesthesia. Tell us exactly what you do with the procedure.
Together Victoria and Gary pored over every detail of the test. Finally they learned Parker had been given a small amount of a hormone called secretin. Used in diagnosing problems with the pancreas, secretin is extracted from pigs, but very similar to a naturally occurring hormone in humans. Maybe secretin was responsible, Victoria told the doctors.
They were just really kind of fascinated, but I think kind of disbelieving at the same time, says Victoria.
Sort of Thats a wonderful story, little lady, but thats not whats going on?
Were very happy for you, Mrs. Beck, now just get out of our face, she says.
And what was worse, after giving Parker one more dose of secretin, according to his mother, the University of Maryland cut him off. She feared Parker would lose everything he had gained.
The reason the center wouldnt continue? Well, we were told at the time that it wasnt FDA approved, says Beck.
The University of Maryland declined Datelines request to discuss Parker Becks treatment. But what we do know is that the hospital followed the rules laid down for them by the FDA rules generally written to prevent doctors from experimenting with risky or untried treatments. The FDA had not approved secretin as a treatment for anything, including autism only for helping diagnose digestive problems, precisely the way it had been used on Parker. Using secretin for any other reasons falls under whats called off-label use a medical gray area that in this case many doctors seem reluctant to enter.
How hard was it to get a doctor to say Okay, I believe you. Lets prescribe some secretin and see what happens?
Over a year after the endoscopy, says Victoria. She says dozens of doctors said no.
According to Beck, it was as if she was saying, I think this has saved my childs life. Hes back. And theyre saying, We dont feel authorized to give it to you.
Parker did not get any more secretin for months. His parents say that while he did not regress, he stopped improving. It took months of telephone calls and scanning the Internet, but finally Victoria and Gary were able to find one doctor willing to give Parker more secretin.
And Parker seemed to improve. It was
during that time that other parents with autistic children heard about his dramatic
OTHERS REPORT SUCCESS
Last month, Dateline talked to a group of parents with autistic children parents who had almost given up hope until they heard of Victoria Becks discovery and managed to get secretin for their children.
After that secretin, no more diarrhea, potty trained, looking in the eyes, talking. Hes talking, hes talking, five and six words and hes saying, Look how pretty outside! says Linda Peacock of her childs progress.
Sherry Battisti says of her child, He was staring right in my face, looking at my eyes, looking like, Mom, I havent seen you in a year.
To date, Dateline has learned from Dr. Rimland that, unofficially, about 200 children have received secretin and more than half of those have shown some positive response.
In my book, Victoria Beck is a veritable hero, says Dr. Woody McGinnis, a general practitioner from Phoenix, Arizona. He was one of the first doctors to take Victoria and her discovery seriously. He now specializes in treating autistic children.
He says that in his medical opinion, its possible that a mother in New Hampshire has discovered a miracle treatment, maybe even a cure. McGinnis says he believes that for many children, secretin regulates digestive problems, which in turn cause changes in their brain chemistry.
But secretin is not helping everyone. Last month, Susan Connors invited Dateline to watch as her 7-year-old autistic son, Patrick, received his first infusion of secretin. It was administered by a New York state doctor willing to venture into off-label use of the hormone. While Patrick initially showed signs of improvement, it faded quickly. Even a second infusion did not seem to help.
I think that theres no
assurance that any given child will respond, says Dr. Rimland, so it will be
very premature for a parent to assume that their kid is going to be one of those who will
experience this as a breakthrough. On the other hand, I would urge every parent to look
into the possibility that their child may be one of those who will benefit.
PARENTS ARE IN THE DARK
So here lies perhaps the biggest dilemma of all: it appears we may now have a treatment which possibly could help thousands of children but no conclusive studies have been done yet, so parents and doctors are operating in the dark. If it works, how much of this should a child receive? And how often should they get it? Even more importantly, who should get it? Even for parents who are lucky enough to find some doctor somewhere willing to go off-label and prescribe secretin, the supply is extremely limited.
So when talking to the parents who have found doctors willing to supply secretin, they will not risk that supply by revealing the name of the doctors.
I dont want our supply, Parkers supply, of it to be cut off, says Victoria Beck.
Because its limited, theyre forced to experiment about how much secretin to give their children and how often.
Today, Parker continues to thrive his secretin supply secure for now.
Could Victoria Beck go down in medical history as someone who opened a whole new door? I think she could, says Dr. Rimland. I wouldnt be surprised to find that she has.
Though clinic trials are still underway, Victoria is convinced that secretin is responsible for helping Parker escape from the box of autism that an overlooked, natural hormone is the answer to their prayers.
Definitive proof that secretin therapy works will only come after more research. Preliminary tests are underway, but it could be a long while before secretin is approved by the FDA to treat this disorder.