Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research & Recovery Paperback - 2002

First line

We're in the Emergency Room.

From the jacket flap

When their nineteen-month-old son, Miles, was diagnosed with autism, Karyn Seroussi, a writer, and her husband, a scientist, fought back with the only weapons at their disposal: love and research. Consulting medical papers, surfacing the Web, and networking with other parents, they traced the onset of their child's problems to an immune system breakdown that coincided with his vaccinations. As a result, his digestive system was unable to break down certain proteins, which in turn led to abnormal brain development. So Karyn and her husband got to work -- Karyn implementing their program at home while her husband tested his theories at the scientific lab where he worked.
"Unraveling the Mystery of Autism and Pervasive Developmental Disorder is an inspiring and suspenseful chronicle of how one couple empowered themselves to challenge the medical establishment that promised no hope -- and found a cure for their child. Here are the explanations and treatments they so carefully researched and discovered, a wealth of crucial tools and hands-on information that can help other parents reverse the effects of autism and PDD, including step-by-step instructions for the removal of dairy and gluten from the diet, special recipes, and an explanation of the roles of the key players in autism research.

Excerpt

Chapter One

The Diagnosis

A severe language delay is almost never diagnosed in a child under two, and autism is tricky--sometimes there are a few words and normal developmental milestones in the beginning and it's hard to notice when they disappear or don't increase. Besides, so many well-meaning people had reassured me:

You can't compare him to Laura--she was so precocious. Boys talk later than girls do. He's had so many ear infections. Alan didn't talk until he was three. My next-door neighbor's son didn't talk until he was four. Einstein didn't talk until he was . . .

I had changed pediatricians twice, begging for help or information regarding Miles's irregular sleep patterns and chronic ear infections. At that time, when he was a year old, his social development was not yet a problem, but his ears were. The first two doctors had concurred in a misdiagnosis of asthma due to his mucusy breathing, and prescribed albuterol, a medication that opens bronchial tubes, in the words of the first doctor, "to use if the noise bothers you."

"My mother just read an article linking milk and wheat to ear infections," I had explained to the second doctor. "Do you think I should try taking him off those foods?"

"The medical community doesn't put much stock in those studies," she had said. "You can try it if you like."

"Well, Miles loves milk. I'd hate to take it away if I don't have to."

"It probably won't make a difference anyway. Some kids just get ear infections. They'll clear up in the spring."

I had doubted that the ear infections would "clear up" by themselves. Alan and I had had the same disconcerting feeling that we would never again sleep through the night.

After eight ear infections in three months, and countless doses of antibiotics, I had asked the doctor if she would recommend ear tubes for Miles.

"I don't like medicating him so often," I had explained. "It seems like he's always on antibiotics. And he's up for so much of the night. I am really not functioning very well on so little sleep, and Laura is finding his constant crying extremely stressful."

"Well, some children require more effort than others. Just because you had an easy time with Laura doesn't mean there's something wrong with Miles."

"Yes, I realize that, but he is just so difficult. I own a retail business, and I can't tell you how many times I've had to leave work to bring him in. And the screaming . . . I'm sure there's something wrong with him. I thought that if he had ear tubes . . ."

The doctor had looked at me coldly.

"Parenting can sometimes interfere with our work schedules," she had said. "Perhaps you are the one who needs help, not Miles."

I was stunned. I had stared at her for a moment, then turned around and walked out of that office for the last time.

This event begins our story. I was to learn that the next chapter of our lives was not to be unique. To other parents of autistic children, it was a hauntingly familiar sequence of events.

Dr. Stover, our new pediatrician, was booked up when we switched to her practice, so on January 12 we saw her nurse-practitioner, Susan Percy.

"What about his breathing?" I asked. "We were told it was asthma, but the albuterol doesn't seem to make a difference. Can you hear it? It's not really wheezing. It's sort of a honking or clucking in the back of his throat."

Mrs. Percy listened for a moment. Then she went out and came back with Dr. Stover, who smiled and introduced herself. Miles picked up his shirt from the examining table and used it to play peekaboo with her while she put a stethoscope to his chest.

"Cute baby," she said, smiling. "Who told you that was asthma?"

"Two different doctors. What is it?"

"Just mucus," she said. "I don't know what causes that--allergies maybe--but don't worry about it. When he's old enough to clear his throat, it will go away. You can throw away the albuterol--it won't help."

"I didn't think it did," I said, smiling with relief.

In mid-February I was back in her office. I explained that I was concerned because Miles's language development seemed slower than Laura's had been.

"From what you've told me, Laura was an early talker," said Dr. Stover. "At this age, at thirteen months or so, two or three words is perfectly normal. Miles's social development looks good--I wouldn't worry. But I will send you over to Otolaryngology for a hearing test. I agree that he has had an awful lot of ear infections."

Two weeks later, on March 3, Miles did fairly well on the test. He showed only a very mild hearing loss--"within normal parameters."

We visited the office again a month later, on April 4, for Miles's fifteen-month "well-baby" visit.

"Miles's ears look good."

"Yes, well, they should. Alan says we should buy stock in amoxicillin. But one more ear infection and he's getting ear tubes--Dr. Roberts at Oto gave me his solemn promise."

Ear infections occur when fluid builds up in the inner ear. "Tubes," which are called "grommets" in England, are little rubber cylinders that are installed in the eardrum to help alleviate the pressure and hopefully prevent further infections. While the child is anesthetized, his doctor makes a tiny incision in the eardrum and inserts the tube as if it were a window between two rooms.

Mrs. Percy laughed and handed me a form to sign, authorizing them to give Miles his measles-mumps-rubella vaccine.

"What happens if I don't sign this?" I asked.

"Well, you won't be able to send Miles to nursery school, or kindergarten."

"Oh. Okay. It's just that these risk warnings are kind of scary."

"Well, vaccine reactions are very rare. Try not to think about it."

"Okay. But first, can you give him some Tylenol? He had a really bad screaming episode after his two-month DPT shot."

Three days later I was back. Miles had another ear infection.

Eight days after the shot, on April 12, after giving me another lecture about how the medical community was trying to be more conservative about inserting ear tubes, the otolaryngologist approved the surgery. It would be at the end of the month, just before our trip to Los Angeles to visit Alan's family.

Then, two days after that, Miles had a really miserable day. It was the first night of Passover, a night when my family always came together from different parts of the country. I was having the Seder, the ceremonial dinner, at my house, and was frantically trying to prepare. Fortunately, I had arranged for Lyn, our baby-sitter, to stay for dinner and to put the children to bed. Miles was pale and cranky, and barely acknowledged his grandmother or his adored Uncle Matthew. He cried during the meal and refused to eat, instead drinking several cups of milk. Lyn put him to bed early.

Late that night, only an hour after I finished cleaning the kitchen, Miles was up screaming. His face was red and his limbs seemed to be shaking. Alan put some liquid ibuprofen in a cup with a couple of ounces of milk, but no sooner did Miles drink it than he threw up. Over the screaming I hollered to Alan to find the thermometer--Miles was beginning to feel warm.

By the time Alan found the thermometer Miles was very, very hot. I measured his temperature at 106. His limbs were trembling violently, and his screams had intensified. I threw him into his car seat and drove the two miles to the hospital as fast as I could, running two red lights in the quiet streets.

Finally, after three Tylenol suppositories, Miles stopped crying and fell asleep. The resident at the emergency room did not have an explanation.

The next three weeks were strange ones. Miles seemed very spaced out. He stopped talking, stopped smiling, and started drinking a lot of milk.

Then, at exactly sixteen months old, Miles got his ear tubes. In the waiting room, before the surgery, he held my hand as we watched the tropical fish swim peacefully in a large tank. "Ishhhhh," he whispered, for the last time.

After the surgery the doctor told us he had had something called "glue ear."

"The fluid in his ear had hardened into a thick gum, like silly putty," he said. "It must have been causing a bit of discomfort and perhaps some mild hearing loss."

"What causes that? Could that be from allergies? My mother thinks ear infections are caused by milk allergy."

"I don't know about that. I do see this in some children. It's good that we got in there, since masses like that harbor infection and take a long time to go away by themselves. You're probably going to see a real explosion in his language now."

"Thank you so much," I said, relieved. "We're so glad to have this over with." Alan picked up his dazed son and carried him out to the car.

"Now maybe things will get back to normal," he said.

But things did not.

Soon we forgot what normal was.

My father-in-law was very ill, and we knew that it was the last time that our children would ever see him. I brought the video camera on our trip to California, and taped much of our visit. Laura was so cute, singing songs and telling stories in her squeaky little voice, golden ringlets bouncing around her head.

Meanwhile, in the background, Miles trotted back and forth across a patch of gravel in his grandparents' back yard. Back and forth, back and forth. Several times I tried to engage him, my voice on the videotape sounding cheerful but with an obvious note of concern.

"Hi, Miles! Hi, sweetie! Whatcha doing?"

Miles would turn and stare at the camera, unsmiling, for a few seconds, then turn away. There was no joy, no sadness, no curiosity, no connection, nothing. I moved the camera away from my face and tried again.

"Miles! Miles! Milo! Miles!"

He finally turned and looked at me as if I were a few lines of incomprehensible hieroglyphics, a meaningless combination of features. Chilled, I turned off the camera.

At the table that evening, in his high chair, I saw a faint glimmer of acknowledgment as he recognized a familiar command. "Milo, make, bang-bang! Make bang-bang!" I smacked both hands on the table to show him. He knew this; he had done this before. It was one of his favorite games. I felt a twinge of fear. Suddenly, he responded, just for a moment, patting the table with his hands. Then, abruptly, he looked away. I could not get him to do it again.

After our trip, life became much worse. Miles's stools had become very loose, with a sour, pungent smell, and he became more and more withdrawn.

One day I was trying to get lunch ready before Miles woke up. Please, just one more minute. He could read my mind. I heard a whine from the baby monitor on the kitchen windowsill. I had forgotten to make a bottle. Urgently, I rinsed off my hands and poured milk into a bottle, screwing on the nipple as I ran upstairs. Sometimes, if he got the bottle fast enough . . . but it was too late. The whines had turned to screams.

Every time he woke up, every morning and after every nap, Miles would cry inconsolably for about half an hour. Nothing seemed to help, and nothing distracted him. I could tell that Lyn, our babysitter, was close to quitting.

"Babies are not supposed to cry this much," she said, over the din, as if I had some control over the duration of his screaming.

I looked at her helplessly. Aren't some babies just high-strung?

"Miles, cut it out! Stop!" Alan once shouted. He so rarely raised his voice to the children; it actually startled Miles into stopping, for a moment. Then he began to scream again.

"Miles, Miles, you're giving me a migraine."

"Maybe he's got a migraine," I suggested. "Look at how he's rubbing his forehead on your chest." I took over for a while, holding him and making soothing noises, for my own comfort, I suppose, since it seemed to make little difference to the unhappy child in my arms.

Sometimes, after ten or fifteen minutes, we could get him to stop with a bottle of milk and a Disney sing-along video. I remember the feeling of relief when the moving images finally caught his attention and the screaming began to ease up. I would hold perfectly still with him in my arms, afraid to move. After a few minutes, my muscles would begin to ache, and I would ease him onto the couch, moving so slowly and noiselessly that even my cat wouldn't have noticed.

After a while, we found ourselves relying on those videos a lot.

"Hey, Alan, remember before we had kids, when we agreed that we disapproved of TV for young children?"

Alan just looked at me grimly.

We got into the habit of keeping cups of milk handy at all times, just to avoid the screaming. On ice, in our bedroom, for at least one nighttime awakening. Three cups in the diaper bag for a two-hour trip to the mall.

I was at my store. A frequent customer of mine, Patty, was there with her little boy. Her son was the same age as mine and was also not really talking, although he said a couple of words. I smiled at him. He smiled back. Patty prompted him.

"Jimmy, can you say hi to Karyn?" His grin widened. "He's started saying hi," she explained. Suddenly, he pointed at a poster behind me, which had a picture of a bird on it.

"Look!" he said excitedly.

At that very moment my mind became firmly unsettled. My belief that my children were safe and healthy was seriously threatened for the very first time since I had become a parent. At first I couldn't put my finger on it, but there was something about what Patty's son had just done that mine simply could not do. Then I realized that he had pointed.

Just what was it about pointing that was so special? I recognized that it was a child's request for shared attention, his way of saying "I want you to see what I'm seeing." Miles did not seem to care about things like that. When Laura was a toddler, I could hardly sit down before she filled my lap with items to share with me, or for me to appreciate with her. She had pointed regularly, while Miles did not. What I didn't realize at the time was that the absence of pointing is one of the defining characteristics of autism.