“Simon”
“The recital is coming,” says Simon’s guitar teacher. “Do you want to play ‘Ode to Joy’? It is next Saturday.”
I almost opened my mouth to reply, but decided to let my son to handle the conversation. “Sure,” he said, “I can make up my art lesson on Wednesday instead of Saturday, Mom.”
It was quiet in the car on our way home. Simon was reading his book, and I was thinking. “Ode to Joy.” Sure. Why not? How symbolic. My memory brought me back to my childhood. I was about Simon’s age when we started learning about Beethoven in my music school. It was a while ago in Russia. I remember my teacher’s remark about Ninth Symphony, the beginning. “That’s how destiny knocks on your door. Ta-da-da-da . . .”
Destiny knocked to our door as to many other doors when Simon was less then three years old. Like many other parents, we’ve realized that he is developmentally delayed, but when Simon’s preschool teacher called me for a talk, we’ve realized that things are getting serious.
Simon got his diagnosis pretty fast. First it was PDD-NOS, which they quickly changed to autism. By the time the University of Minnesota clinic gave his report, we already knew the diagnosis. After initial shock and anger we started to do our research. We knew we didn’t have time for grief. After hours of web searching and spending a good sum of money on books, we’ve decided to move quickly, just start with something, anything that is available to help our son.
It was easier said than done. We’ve both had very demanding jobs and older child to take care of. The school district was not much help. They provided only ten hours a week of special education, and the curriculum was not very impressive. Mostly they tried to teach us how to accept Simon’s condition. “Just love him,” his teachers said. And there were plenty of parents who did just that. I attended a parent support group meeting only once and left after one mom with two autistic kids said, “I am even happy they are autistic!” I was not happy at all.
I have a master’s degree in biology, and my husband is physicist. Being a biologist helped me a lot. I quickly realized that we had to find medical treatments for Simon’s condition, not just behavioral ones. I put him on the GFCF diet at once. It helped a lot. We’ve had initial success with DAN treatment, but things looked very uncertain and complicated.
Finding a good program for Simon looked almost impossible. All home agencies were booked, and besides, we did not have any funds to pay for it. We were stuck with the school district, with our DAN doctor and me, personally, with a very unhappy manager in my lab.
I read about NIDS at the very beginning of my endless search for information. It made lots of sense to me. I even tried to find someone in Minnesota to help me to implement the protocol. I have family in California and we visit often, but to go to Los Angeles just to see a doctor? Anyway, I joined the NIDS Yahoo group and started to read e-mails.
I cannot recall the moment I decided to make an appointment. I think it was after a conversation with one Minnesota mom whose son was among the first of Dr.Goldberg patients helped us to make our mind.
The waiting list was long (six months) but someone canceled. I immediately took the spot. We came to California just before Simon’s third birthday. Around the same time the first center-based ABA agency opened in Minnesota, and our insurance paid for treatment. It was almost a miracle. Simon went to this place from 8:30 till 5:30 every day like to preschool.
Simon now is eleven. He “graduated” from his therapy just before kindergarten and he is another “success story” for the agency’s owner. They provided very valuable service. We still get phone calls from new clients and gladly give references.
On our late visit to Dr. Goldberg’s office we saw Simon’s file. It was huge and probably is going to be bigger. We are not going to “graduate” from it easily. I cannot tell my son when he can stop to take his medication or when he can try other types of food. I cannot promise him that we are not going to do NeuroSPECT anymore. And he cannot stop coming to the hospital for blood drawing every six weeks.
People who did not know about Simon’s condition cannot even suspect that something is wrong with him. His teachers at school know, though he does not get any special services. His art teacher does not know. Neither do his swim team coaches or his guitar teacher.
Our life is not going in the direction we planned so long ago. We are constantly compromising and planning ahead. Everything that Simon does analyzed carefully. We constantly ask ourselves, is he normal? Does he behave as a typical child? What do other kids think about him?
Our road is still bumpy. We constantly fight allergies, virus, and low white blood cell count. Simon looks and behaves much better than his monthly blood work does. His latest NeuroSPECT is not as good as we had hoped. There is still a lot to be done.
I have only one piece of advice to other parents: Do not be afraid to change your life. Do not be afraid to go to another state to get the best care. Do not be afraid of making your child cry when the nurse has to draw his blood. Do not be afraid to rearrange your life and house. We all have our life planned to a certain extent and we do not like to accept changes.
So, did we successfully come to “Ode to Joy”? Hopefully for us it will end better than for Beethoven. For him “Ode to Joy” was the end. I believe, for us it is just a beginning.
“Kaylie”
Our little girl was diagnosed with PDD at two and a half. Like other parents, we were not given a whole lot of hope. They told us there was no “cure,” it was a “developmental disorder”, and that she would never be like other children. Our best option would be to get her into the best behavioral program we could find. That was it. They did no medical workup whatsoever. These were top Boston doctors in top Boston hospitals. When I asked about special diets or immune system problems or anything that may have been metabolical or biological, they dismissed every bit of it. Pretty soon we dismissed them. We tried a DAN doctor but still didn’t get the answers we were seeking. Other parents around the web were raving about Dr. Goldberg. After poring over his website, I knew he was the one for our Kaylie. His science made a lot of sense. “Are you crazy?” was my husband’s first reaction. “He is in California. We are in Massachusetts. He sounds great, but it’s just not possible.” Then I learned that Dr. Goldberg came to the East Coast a couple times a year. So when Kaylie was in kindergarten and six years old, she met Dr. Goldberg for the first time.
Kaylie was progressing nicely with her behavioral/educational component before she started with Dr. Goldberg. As she started the medications, we noticed her progress markedly sped up. It was easier for her to focus and remain calm. The lingering problem behaviors all went away and she seemed happier. She went on to regular first grade on her own and did great. By the end of grade 1, she no longer qualified for any special education services and was considered a “typical” child. I remember crying a lot that year. It is hard to explain the overwhelming appreciation and joy a parent of a special needs child feels when they see their child accomplish something that once seemed impossible. We of course still saw little things that needed work. And her blood work still showed that there were problems. Over the years, her blood work slowly improved, and Kaylie socially matured.
Today Kay is fourteen and is about to graduate from eighth grade. She is an honor student who is super excited about the big eighth grade dinner dance that’s coming up. She spends a good deal of time either listening to her iPod, texting on her cell phone, or talking to friends on the computer. I guess you could say she is a typical teen. She understands what happened to her and that her body was sick. She hates the “A” word; in fact she leaves the room if it comes on TV. She’s such a good girl. Life has not been easy for her, but she doesn’t complain. Even when she has to endure a painful shot, she doesn’t flinch. When she knows I will be talking to Dr. G, she sometimes asks when he is going to get the medicine that lets her eat pizza and “normal” food. I guess that would be her one complaint. She wants to eat the junk she sees he
r pals eating.
If not for Dr. Goldberg, Kaylie would not be where she is today. What if we had listened to the Boston specialists? They didn’t draw blood. They didn’t look at her brain. How much damage would have been done to my daughter’s brain and body by now if we had done what the Boston doctors recommended? I doubt she would be taking honors algebra right now. It is scary and sad. Those Boston waiting rooms were full of kids just like Kaylie. Not all parents question doctors. How many of those kids could have been with my daughter right now if their parents had been given the right information and the right treatment? We are so appreciative for all Dr. Goldberg has done for Kaylie and how hard he has worked for our kids. We only hope that soon there will be a lot more support for NIDS. In a couple of weeks, we will be attending Kaylie’s eighth grade graduation. We are so proud of Kaylie for all she has overcome, and full of tremendous gratitude for Dr. Goldberg, for giving Kaylie the means to a healthy, normal life. She is on her way to high school and then off to fulfill wherever her dreams take her. She has done all they said could never be done.
“Noah”
“He’s going to be an early talker,” Robyn announced to her husband, Greg, while playing with their four-and-a-half-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 thirteen 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 thirteen 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 twenty two 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 two and a half, their precious baby boy was diagnosed with autism, or what was labeled as autism.
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-totwo 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 antinausea 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 website of Dr. Michael Goldberg.
“When I read the description of neuroimmune dysfunction syndrome 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 website, 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 ten 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.”
APPENDIX C
PATIENT SCREENING/DATA QUESTIONNAIRE FOR AUTISM/PDD/ADHD USED AT DR. GOLDBERG’S PRACTICE
The Myth of Autism Page 23