“He’s going to be an early talker,” Robyn announced to her husband, Greg, while playing with their 4 month old son, Noah. The baby responded with soft coos and gurgling sounds. His mouth moved as if words were scrambling to get out. Noah’s older brother, Joshua, was never much of a babbler, his mother recalled. He was a quiet, happy child, but he wasn’t prone to labeling objects or uttering single words. When Joshua began to talk at about 13 months, he did so in complete, oftentimes grammatically correct sentences.
Excited, the mother of two sons was anxious to hear Noah begin to attach meaning to the world around him through language. At a year, he was still babbling, but there was no progression toward meaningful language. Robyn and Greg voiced their concern to Noah’s pediatrician but were assured there was nothing wrong with their baby boy.
Then, things got worse. Noah stopped babbling and began to avoid eye contact. He didn’t respond to his name and rarely smiled. Noah cried a lot, ran unexplained high fevers, and developed a full body rash that doctors couldn’t explain. His sleep was restless, and he seemed content to stay in his crib and stare at the ceiling. At age 13 months, Noah crawled but refused to walk. Dismayed by the unexpected turn of events, Robyn and Greg began to press their pediatrician for answers.
“We suspected something was wrong,” Robyn said, “We just didn’t know what.”
The doctor recommended x-rays to ensure Noah’s legs physically were fine. The x-rays were negative; there was no medical reason to explain why he wasn’t walking. At the time, Robyn was pregnant with their third child, Elijah. Soon after his birth, they switched insurance plans and started seeing a new pediatrician. Finally at the age of 22 months, Noah began to walk, but he still had no words. Again, Robyn and Greg voiced their concerns over their son’s developmental delays at his annual checkup. The new pediatrician encouraged the couple to give him some more time.
“The doctor thought that we were probably comparing Noah to Joshua, because he was highly verbal and reading by the time he was three years old,” said Greg.
Unsatisfied, the parents insisted on referrals to any specialists who might help.
“We dragged him to an audiologist to check his hearing and then to a speech pathologist to assess his preverbal skills and general development,” Robyn said. “She was the first person to actually suggest there was something wrong with him.”
With a referral to a psychologist in hand, Robyn left the clinic feeling like someone finally was listening. Two weeks later, Robyn and Greg had their answer. At the age of 2 1/2, their precious baby boy was diagnosed with autism, or what was labeled as autism.
On the same day Noah was diagnosed, Robyn left her three children with her sister and attended a support group meeting in Los Angeles.
“One mother asked me how I could be so calm. Her son had been
diagnosed a couple of months ago, and she still felt paralyzed,” Robyn said.
“I told her that now our enemy had a name, and it was our job as Noah’s
parents to fight for him.”
After months of research and referrals, the family embarked on a journey, which included ABA, speech therapy, vitamins, and enzymes. Although Noah made some progress, he was still having tantrums, severe hyperactivity, and difficulty with fine motor skills. He would speak one-to-two word sentences, but only when he desperately wanted something.
“It seemed that with every step forward, he would take two steps back,” noted his father. “It was very frustrating.”
When Noah was five years old, he started having seizures. Joshua had been diagnosed the year before with a seizure disorder. Soon after that, Noah developed another neurological condition called Cyclical Vomiting Syndrome (CVS) and excruciating migraines. For nearly two years, Noah would throw up for several days out of each month, with migraines before and after each episode. There is no effective treatment for CVS except anti-nausea drugs, which rarely helped. Imitrex nasal spray eased the pain of the migraines.
“It was devastating to watch Noah go through this month after month, with no end in sight. We were virtual shut-ins during these episodes,” Robyn said. “It was particularly hard on Joshua and Elijah.”
Desperate, Robyn and Greg made the decision to take Noah off all vitamins and supplements. Robyn painstakingly searched the Internet for answers and happened upon the Web site of Dr. Michael Goldberg.
“When I read the description of Neuro-Immune Dysfunction Syndromes
(NIDS) and what it does to the brain, I realized that it perfectly described my son,” said Robyn.
NIDS occurs from a dysregulated immune system. The malfunction can be triggered by a virus, stress in utero or after the baby is born, illness or trauma. After reviewing the Web site, Greg, a skeptic by nature, enthusiastically agreed to a visit with Dr. Goldberg. Seven-year-old Noah had his first appointment in January of 2008. His lab tests indicated immune dysfunction. Four months into the protocol, the CVS completely stopped. The migraines continued, but with less frequency and intensity. Now, after two years, he is steadily progressing in school. Noah is learning to read and loves to draw. He seeks out his brothers to play a game of Wii or jump on the trampoline. Noah’s speech has improved markedly. He speaks in five-to- seven word sentences. He asks questions and provides answers, all the while maintaining eye contact.
“We have a long way to go, but he is finally fully participating in the journey,” said his proud father. “Our steps are consistently forward now.”
Right before Noah began his treatment, Robyn and Greg began to notice issues with Joshua and Elijah. Joshua’s eczema was out of control, and despite being extraordinarily bright, he was having difficulty in school. Unfortunately, he had Asperger’s Syndrome, a high-functioning form of autism where the child is highly verbal but socially impaired. Elijah, now five years old, was suffering from night terrors, ADHD, and extremely defiant behavior.
“He would wake up in the morning with dark purple circles under his eyes, and despite 10 hours of sleep, he was exhausted,” said Robyn. On one of the family’s many trips to the neurologist for Joshua and Noah, the doctor observed Elijah’s erratic and unpredictable behavior and told Robyn that he probably would be seeing him as a patient sooner or later. “I really thought we were heading for a diagnosis of ADHD or worse, bipolar disorder,” said Robyn. “That thought terrified me.”
First Joshua and then Elijah began to see Dr. Goldberg. Their lab work was eerily similar to Noah’s. After about six months of treatment, Robyn and Greg began to see remarkable improvements in both boys. Their immune systems began to normalize, and with that came improvements in behavior, cognition, and overall health. Joshua recently made the Principal’s List, and Elijah is excelling in first grade. Both Joshua and Noah have been weaned off seizure medication and have not had a seizure in almost a year.
“Our children are sick and in pain. It’s no wonder they have tantrums, difficulty learning, and become withdrawn,” Greg said. “Although some of their symptoms mirror autism, this is not true autism.”
Robyn and Greg believe, as do others whose children have seen progress on the NIDS protocol, that this disorder is neither psychiatric nor developmental in nature. It is NIDS—a medical illness that is robbing many children of their strength, their health and their future.
“This crisis is stealing an entire generation,” said Robyn. “But with Dr. Goldberg’s help, we are determined that our children will not be among them.”