Paging Dr. Gupta
May 13, 2008
Posted: 10:48 AM ET

By Dr. Sanjay Gupta
CNN Chief Medical Correspondent

Last week, I sat down with Dr. Bernadine Healy at CNN’s Women’s Health Summit in New York City. She is a remarkable person who has been the “first” at many things, including the first woman to head the National Institutes of Health. We talked about many things, including the persistent brain fog patients and their doctors have when it comes to heart disease and women. Everyone should know that heart disease is the biggest killer of women; in fact heart disease kills ten times as many women as breast cancer.

What I wanted to blog about today, though, is her response to a question I asked about autism. She had written a column about the topic in U.S. News and World Report and told me she believes the link between vaccines and autism is “biologically plausible.” Of course, that spurred several more questions from me (click here to watch). Healy went on to say that many in the scientific world have been quick to dismiss the concerns of parents and have not conducted the necessary studies of causation to definitively rule out a vaccine/autism link.  Healy’s comments have become a lightning rod in the medical community - with an infectious disease expert with the American Academy of Pediatrics calling CNN twice yesterday to express concern parents will misconstrue Healy’s comments and stop get their kids vaccinated - and that vaccines save lives.

Wow. We had to take a moment at the summit, where I reminded the doctor that her comments seemed to fly in the face of most of her former colleagues at the NIH, and the CDC, FDA, and AAP for that matter. She is sticking to her guns, as is the neurologist father of Hannah Poling, who believes when the vaccine court awarded his daughter Hannah compensation, it was a milestone in this debate. Neither are anti-vaccine, and both are arguably legitimate scientists.

I have said over and over again that I was going to keep digging into this issue. What is happening here? For the record, I have had both my girls vaccinated on schedule, but I am curious - what do comments like Healy’s say to parents and scientists?

Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.

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April 2, 2008
Posted: 01:26 PM ET

By Dr. Sanjay Gupta
Chief Medical Correspondent 

All day long, you have most likely been hearing and reading about autism on CNN and CNN.com. The numbers, the costs and even the cultural impact. But, what do you really know about it? Have you ever met someone with autism, and would you even know what to look for? These were things I had been thinking about for some time. In our documentary tonight, I will take you on a journey I found remarkable. Straight into the life of someone who has autism.

ALT TEXT

Dr. Sanjay Gupta with Amanda Baggs

Amanda Baggs is 27, super-intelligent and witty. She lives on a beautiful lake in Vermont and is very skilled at shooting and editing videos. In fact, it was one of her videos on YouTube that first caught the attention of CNN. If I had met her only through e-mails and the Internet, I’d be telling you a very different story. But I was able to visit her in person. Tonight, you will see what I saw and hear some of my first impressions.

Despite the friendly invitations and our lively e-mail banter, Amanda would not look at me when I walked in the room and during my time with her. She wore sunglasses and sat in a wheelchair.  She could make some noises, but she did not speak. If it were not for a device that synthesizes words as she types on a keyboard, we would not have been able to communicate with her at all.

To be clear, Amanda is not typical of people with autism. At a young age she went to school and was considered gifted.  At age 14 her autism was diagnosed.  The diagnosis came late, though her parents and doctors say in retrospect, the signs were almost always there. She rarely made eye contact; she was sensitive to sound and never socialized well with children.  It was only after a child psychiatrist recognized it, that she got the diagnosis.  During Amanda’s teenage years, doctors, social workers and Social Security services who would provide her benefits analyzed her case and confirmed her diagnosis.

She taught me a lot over the few days we spent with her. She told me that looking into someone’s eyes felt threatening, which is why she looked at me through the corner of her eye. Amanda also told me that, like many people with autism, she wanted to interact with the entire world around her. While she could read Homer, she also wanted to rub the papers across her face and smell the ink. If she saw a flag blowing in the wind, she might start to wave her hand like a flag.  She rides in a wheelchair because she has a diagnosed problem with her motor skills. But she also says balancing herself while walking takes up too much energy for her to also type and communicate. To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense.

In case you were curious, there is no possible way that I was being fooled. I checked what Amanda was writing and saying over and over again. I spent time alone with her, so she could not get any visual cues from other people in the room. It was Amanda, herself, communicating with me through this technology.

It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

I am a neurosurgeon, who has spent a large portion of my life working in the field of brain disease and disorders, and Amanda Baggs opened my eyes about the world of autism.

Programming Note: Watch “Finding Amanda” an Anderson Cooper 360 special report with Dr. Sanjay Gupta, at 11 p.m. ET.

Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation. 

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Posted: 11:43 AM ET

By Dr. Sanjay Gupta
Chief Medical Correspondent
 

Today is the first World Autism Awareness Day as designated by the United Nations.  First off, let me say that at CNN we have been preparing for this day for months, and have covered autism stories for years. Since I have been at CNN, I have been covering autism and I have committed myself to this area of reporting and investigation. If you ask most medical reporters, they will tell you the autism beat is sort of the third rail of journalism. It is so rife with controversy and passionate people on different sides of the issue. If you do stories on this topic, you will get criticized. Period.

ALT TEXT

Still, perhaps because I am a neurosurgeon, I have been fascinated with the new brain imaging that allows us to peer deep inside the brain of a child or adult with autism and see the changes that may explain the mysterious symptoms. I will continue covering these stories. Maybe it is because I am a relatively new parent of two gorgeous little girls who jumps for joy every time they pass a milestone and grows a little concerned if they seem to be a little behind compared with their friends. Maybe it is because families from all over the world have sent their stories to me about their own family members with autism.

I have spent a lot of time as a doctor and a journalist with children that have autism. I have walked into those meetings with an open mind devoid of any preconceived notions about what type of person I was likely to meet and what may have caused his or her autism in the first place. As an individual, I find myself less dogmatic and more willing to listen to all sides. I have taken the time to read in detail the 16 best epidemiological studies that exist, as well as the more limited toxicity studies. I have researched studies from as far away as Portugal looking at the incidence of mitochondrial disease and its possible association with autism. I am a better journalist because of it and a better doctor as well.

 Truth of the matter, autism is a spectrum. It is hard to say for sure that someone has “serious” autism or “mild” autism. And, I hate those scales anyway. Truth is, I am not sure my daughter smiled socially at 3 months or she was just happy that I fed her. I am also not sure that her first word came right on schedule. I thought she said “daddy,” my wife said it was “cat.” We don’t even have a cat. Every parent has likely thought about these same things at one point or another.

 As a journalist, especially one with my medical background, I feel responsible to keep the attention focused on this topic. I am delighted that CNN is presenting a worldwide investigation today. Besides the medical aspects, we will discuss the financial, the emotional (did you know the divorce rate has been estimated at 80 percent among parents of children with autism?) and the cultural aspects of autism as you see stories from South Africa, Qatar and many other countries. It is called Autism: Unraveling the Mystery, and I know we won’t answer all the questions, but we will make a dogged effort to get at some of the answers - again, with an open mind and with the single purpose of finding the truth.

 We would like your help.

 Post a note here with your thoughts about how CNN should continue the worldwide investigation.

Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.

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April 1, 2008
Posted: 08:37 AM ET

By Phil Riley
CNN Senior Writer

My cellphone rings and I know it’s bad news.

Only 8 a.m., but the school nurse needs me to take Emma home.

She’s biting and scratching herself, and it’s taking two adults to restrain her.

I can’t ask Emma why she’s so upset. She can’t tell me.

ALT TEXT

Emma Riley and her family have been struggling with autism

Emma is 11 years old. She has suffered from autism for a decade. Her family has, too.

It started in the 1990s, still the dark ages for autism.

The pediatrician said not to worry about Emma’s development.

The psychologist who diagnosed her said to my wife and me, “Read this book.”

It confused and scared us even more.

We’ve come a long way since then.

So has Emma.

She’s more affectionate toward her family, more tolerant of changes in routine.

But challenges continue.

My wife and I’ve had to fight to get Emma in classrooms where we hoped she would thrive.

It’s not always worked out.

Just like social interactions.

Typical kids don’t want to hang out with a girl who doesn’t share their interests or can’t have a conversation.

No going out to a restaurant or church as a family.

Spouses spelling each other is good. Less time together as a couple, not good.

Guilt when you’re not there for her brother.

Sleep deprivation.

But what most concerns my wife and me is this: How will Emma get along when she’s an adult… or when we are no longer physically able to care for her… or after we’re dead?

Recently I took our 14-year-old son, Conor, to a school admissions interview.

Later, he told me they had talked about Emma and he had said, “I’ve had to help watch out for her.”

And Conor was asked how he felt about that.

His answer: “You learn to serve others and not just yourself.”

Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation. 

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Posted: 08:22 AM ET

By John Dear

CNN Media Operations, Sr. Media Producer

I remember distinctly it was December 2006. My entire family became sick at the same time. Our two boys, my pregnant wife and I had projectile vomiting. It was unusual not because we were miserable simultaneously, but because Jonas (18 months at that time) never seemed like himself after everyone else got over it. He no longer wanted to cuddle with us and would not respond to us when called. The eye contact disappeared, and he started tapping with his fingertips on anything he could find. We bought a set of drums and a keyboard thinking he’d be this great musician with his new obsession. Up until that point he had been developing normally, but now the few words he knew were no longer there and he was completely non-verbal.

We approached our pediatrician with these concerns several times over the next six months while bringing Jonas in for various ear infections and tantrums that would wake us in the middle of the night. We were told that he was just like other boys who may be a little slower in developing and a hearing test might give us some answers to his indifference to his environment and his numerous ear infections.

ALT TEXT

Jonas Dear developed signs of autism after his family was ill.

We started doing our own research after Jonas’ refusal to cooperate with the hearing test. We quickly discovered that all the signs pointed to autism.  (Learn more about the Dear family by watching this video)

We were somewhat prepared for the diagnosis by the child neurologist our pediatrician referred us to. It took him minutes to confirm our worst fears. It was not the official diagnosis or the fact that our former pediatrician missed these early signs that shocked us most. It was the single Post-it note that contained all the information we left his office with that day. In barely legible penmanship it listed the Web sites of a few treatment facilities and a suggested book in response to our question about where we could get help and treatment for our autistic son. We quickly learned in our mad dash after the diagnosis that the treatment needed to possibly mainstream Jonas would cost tens of thousands of dollars a year. Insurance would not pay for applied behavioral analysis, or ABA, which, from what we were reading, appeared to be the most successful and costly treatment. It was a no-brainer that we would spend every last resource available to see that Jonas would get the early Intervention that he desperately needed. The clock seemed to be ticking faster as we kept hearing from top institutes and centers: There was a six-to-twelve month waiting list just for evaluations.

We felt as if we’d won the lottery when Emory Autism Center said it had a spot just open in its toddler program, even though the neurologist had told us that was improbable. That was eight months ago. Jonas has now been enrolled at the center for nearly seven months.

About a month ago we had one of those moments that would make any parent melt. We always give our kids hugs and kisses right before they go to bed and tell them “I love you. “. Jonas as usual hugged us, but this time he looked straight into our eyes and said in a soft voice “I wuv you.” He’s done this every night since. Priceless.

Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.

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March 31, 2008
Posted: 11:31 AM ET

By John Dear

CNN Media Operations, Sr. Media Producer

I remember distinctly it was December 2006. My entire family became sick at the same time. Our two boys, my pregnant wife and I had projectile vomiting. It was unusual not because we were miserable simultaneously, but because Jonas (18 months at that time) never seemed like himself after everyone else got over it. He no longer wanted to cuddle with us and would not respond to us when called. The eye contact disappeared, and he started tapping with his fingertips on anything he could find. We bought a set of drums and a keyboard thinking he’d be this great musician with his new obsession. Up until that point he had been developing normally, but now the few words he knew were no longer there and he was completely non-verbal.

We approached our pediatrician with these concerns several times over the next six months while bringing Jonas in for various ear infections and tantrums that would wake us in the middle of the night. We were told that he was just like other boys who may be a little slower in developing and a hearing test might give us some answers to his indifference to his environment and his numerous ear infections.

ALT TEXT

Jonas Dear developed signs of autism after his family was ill.

We started doing our own research after Jonas’ refusal to cooperate with the hearing test. We quickly discovered that all the signs pointed to autism.

We were somewhat prepared for the diagnosis by the child neurologist our pediatrician referred us to. It took him minutes to confirm our worst fears. It was not the official diagnosis or the fact that our former pediatrician missed these early signs that shocked us most. It was the single Post-it note that contained all the information we left his office with that day. In barely legible penmanship it listed the Web sites of a few treatment facilities and a suggested book in response to our question about where we could get help and treatment for our autistic son.

We quickly learned in our mad dash after the diagnosis that the treatment needed to possibly mainstream Jonas would cost tens of thousands of dollars a year. Insurance would not pay for applied behavioral analysis, or ABA, which, from what we were reading, appeared to be the most successful and costly treatment. It was a no-brainer that we would spend every last resource available to see that Jonas would get the early Intervention that he desperately needed. The clock seemed to be ticking faster as we kept hearing from top institutes and centers: There was a six-to-twelve month waiting list just for evaluations.

We felt as if we’d won the lottery when Emory Autism Center said it had a spot just open in its toddler program, even though the neurologist had told us that was improbable. That was eight months ago. Jonas has now been enrolled at the center for nearly seven months.

About a month ago we had one of those moments that would make any parent melt. We always give our kids hugs and kisses right before they go to bed and tell them “I love you. “. Jonas as usual hugged us, but this time he looked straight into our eyes and said in a soft voice “I wuv you.” He’s done this every night since. Priceless.

Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.

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Get a behind-the-scenes look at the latest stories from CNN's chief medical correspondent, Dr. Sanjay Gupta, and the CNN Medical Unit producers. They'll share news and views on health and medical trends -- info that will help you take better care of yourself and the people you love.

Editor's Note

Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.

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