Jenny, in your book Louder than Words, you describe Evan's first and subsequent seizures. Summarize that episode, when he began having seizures.
One of the first signs when I knew something was wrong was one morning he slept in late. So I opened the door and just saw Evan struggling to breathe, and pasty white, blue lips, and shaking. I picked him up and just started screaming at the top of my lungs, ran down the hallway, called 911, and it took them about 20 minutes to stop what they were calling a seizure.
We went to the hospital. They blew it off as a febrile seizure -- seizures that you can get if you have a fever. And considering Evan did not have a fever, I was a little concerned.
Three weeks later we went down to Palm Springs to visit Grandma, and when I pulled Evan out of the car, he had this stoned look on his face. And shortly thereafter, his eyes rolled back, and I laid him down, and he was hardly taking in air, just turning blue. I called the paramedics. By the time they got there, he had gone into cardiac arrest. Halfway to the hospital, they gave me the thumbs up that they got him back.
When we got to the hospital he seized again, and he seized on and off for the next seven hours. We stayed in the hospital for a few days, where they diagnosed him with epilepsy. And I left the hospital going, "Where did this come from?" They kept asking me: "Do you have a history of epilepsy? Does anybody have a history of epilepsy in the family?" No. And I left the hospital with just a diagnosis of epilepsy. And then I knew -- that mommy instinct -- there was something more to the story. So I kept looking for a neurologist to give me the answer I was looking for.
Describe his behavior before he started having seizures.
Looking at milestones, he hit pretty much every milestone. It wasn't until after the MMR [measles, mumps and rubella vaccine] he started showing some regression -- meaning not talking as much as he used to. In playgroup, he was more by himself. Kids would steal toys from him, and he didn't even know they stole the toy. And I would think I just had the most polite little boy in the world who didn't mind people that stole toys from him. Really, those were the first kind of behaviors that I look back now noticing.
Then he started to develop blue circles under his eyes, bloated belly, gas, constipation, eczema, yeast. And these are all -- now I know -- comorbid conditions that go with autism. But at the time I just didn't know why Evan was becoming so sick all of a sudden. What was going on? I was feeding him healthy foods. And that's when the first seizure happened.
How long after the MMR was that first seizure?
You know, a lot of people think, and probably from me saying in some interviews, that it was after the MMR I noticed changes.
I don't think it was just the MMR shot that caused any kind of trigger with autism. I think it was a compilation of so many shots to a kid that obviously had some autoimmune disorders. So I would say maybe a couple of months, a month or so after the MMR, I started to notice some physical ailments such as constipation, rashes, eczema. That was like the first little sign. And then the train just kind of descended from there.
How was the diagnosis of autism determined? Was it by more than one doctor?
I found the best neurologist in the world and pulled some strings to try to get in there. I was praying he would just say, "Yes, it's epilepsy." But after his eval, he canceled all the rest of his clients the rest of the day. And I just thought I was getting VIP treatment, but he sat me down and said, "I'm sorry, but Evan has autism."
And in that moment I died, but I also knew he was right. That was that mommy scary instinct going, "Yes, this is part of my journey, and this man is telling me the truth, and I need to do something," which was pretty much cry in a ball, because he had no direction for me. It was just: "I'm sorry, he has autism, and there's not a lot you can do. There's some therapies, behavior therapies, but I'm sorry."
So I left that office devastated, hopeless, cried in my bed, and maybe it was even that night went on Google and typed in "autism." And on the corner of the screen, in the sponsored links, it said, "Generation Rescue." And I decided to click on it, because right underneath it, it said, "Autism is reversible." And I thought to myself, well, this must be a load of crap, because if it was true, why didn't the best neurologist in the world tell me there's something I could do to reverse autism?
So I clicked on Generation Rescue, and I found not just a guy who made the Web site, but this whole community of thousands of parents that were actually healing their child, recovering them from autism.
So I read everything on that Web site and took a leap of faith and said: "I'm going to follow the path of hope, because the medical community is offering none. I think I'm going to go this way."
And I decided to try the first thing that they recommended in our community, which is the gluten-free, casein-free [GFCF] diet. I thought to myself, you know what? It's just wheat, and it's just dairy. I'd called my pediatrician at the time, and he said: "It's a load of garbage. It's not real. It hasn't been studied. It's a waste of time. Why would you do that? It could have nutritional deficiency issues." And I still said to myself: "Well, that sounds like no hope. I think I'll try this way."
And I removed wheat and dairy, and within two weeks, Evan had better eye contact, and he doubled his language. He was saying about two words per sentence, like "Juice, Mama," and he went to "I want juice, Mama," which is huge in our community. It's like we count the words they say in a sentence. So within two weeks I saw a jump. And I went, "Oh, this is the path I'm supposed to be on."
So I followed the next step from the parents, which is vitamins. To me, again, harmless, in a parent's point of view. Gave him cod liver oil. Boom. His stimming got better; stimming is like flapping hands or looking at objects out of the corner of his eyes. Seemed to dissipate. He started sleeping really well. His temper tantrums went down through the course of doing vitamins, and that's when I said, "OK, now I'm really onto something."
And I looked into the community of DAN! [Defeat Autism Now!] doctors, which are doctors that specifically treat these comorbid conditions that come with autism, such as constipation and eczema and things like that.
So I found Dr. Jerry Kartzinel, who started treating these conditions. And I noticed that when I treated the eczema and the fungus in his gut, words just started coming out of his mouth. I mean, he started getting jokes. It was almost like someone turned the light switch back on, because I saw this kid in the first year of his life, and then the lights went out. And it was in this moment now the lights came back on, and I saw this beautiful soul that was just struggling for so long.
I remember calling my mom -- it was during one of the times when Evan was watching SpongeBob -- just bawling my eyes out, going: "Mom, he laughed at a joke! He gets it. He's coming back!" And I remember thinking to myself and praying to God, saying, "If you just continue to teach me how to heal my son, I promise I will show the world how to do it."
And the state [of California] had come back to re-evaluate Evan to continue [special needs assistance] services, and they discontinued the services after six months because they saw he didn't need them. The recovery was fast for Evan, although I pushed really hard. But it worked. And not only for me -- I followed the path of all these other moms.
People say: "Well, for you to just go out and preach this story about Evan, don't you think that's kind of bad? It's just your son." Well, it wouldn't be everywhere! It wouldn't be on the nightly news! It's because [of] all of these parents' firsthand accounts of witnessing their child getting better that it's in the news, that you're doing a story on it.
You couldn't have found that information without the Internet. What is the "University of Google"?
I get criticized a lot from "the other side," -- I hate having to say that -- but the neuroscience world [for] using Google. To me, Google is one of the most incredible breakthroughs that we have today. Yes, it can scare a lot of patients, thinking we're all dying because we look up something on Google. But there's also a lot of anecdotal information from parents, firsthand accounts of what they did for their own child. And I'm so grateful, because like I said, if I didn't click on Generation Rescue's Web site, I never would have found how to help heal Evan. ...
Can you talk about the link between the immune system, the gut, and how it relates to vaccines?
One thing I've noticed talking to all the other parents is that when the gut becomes disrupted -- you know, yeast grows, any type of inflammation -- it causes a neurological reaction. A lot of people didn't understand there was a gut and brain connection, and I would tell them: "Let's go try that theory out in a bar. Go have a drink, and see how it affects your brain."
To us, it's the exact same thing. We saw a gut connection. Our babies all have these Buddha bellies. If you talk to parents who have children with autism, they have little Buddha bellies. Their guts are inflamed. When that happens, we see a difference in their behavior. I don't know where that connection is, but there's enough evidence for us to go, "There is a connection."
When did you first think there might be a connection between vaccines and autism?
The first time I heard about the vaccine and autism connection was a month before Evan received his MMR shot. And I walked into my pediatrician's office during the MMR time and said: "I don't want Evan to have this shot. I'm really scared. It was in Time magazine. Parents are really concerned that this is the autism shot."
And he got very angry at me -- very, very angry -- and swore at me and said: "It's just parents' desperate attempt to blame something. Has nothing to do with it." My instinct was screaming, "No," yet my husband, who was with me, wanted it. So he signed the paperwork to get the MMR. I couldn't even do it. And that's when the train kind of started to regress with Evan.
You write that [you want] the government to come up with a test for immunity or enzyme vulnerability to see if a child would be predisposed. ... What would you like to see in the meantime, in this phase of research?
I would love for a pediatrician to sit down and take family history and say: "All right, let's talk about your health. Do you have autoimmune issues? Do you have diabetes? Do you have bipolar disorder?" There's this whole methylation tree I talk about, which is the depression, bipolar. Then there's this autoimmune tree of Crohn's disease, celiac disease.
If you have these traits, I think the pediatrician should then look at that as a little bit of a red flag to say: "This child might be genetically vulnerable to having an autoimmune disorder, might not be able to detox the 36 shots that are coming, so let's take this into consideration and maybe space out the shots. How does that sound?" To me, that would be a huge breakthrough -- taking some family history.
Talk about finding a cure and link what you say to vaccines and the epidemic.
Right now people ask me, "You cured Evan?" And I say: "No, there is no cure for autism as far as I've seen right now. I recovered him."
And the reason why I say "recover" is because we're looking at this like an injury. You can't become cured from getting hit by a bus, but you can recover from getting hit by a bus, because it's an injury. So we're looking at autism like an injury. And when you do, then you can go in and go: "OK, let's fix the parts that are injured. Let's go to the gut."
And when we go in and we examine parts that were damaged à la the immune system, and we go in and fix that, and they recover and get better, we start to look for causes. What happened that caused, that triggered this dysfunction, these comorbid conditions? Hmm, could it be toxins? Could it be a toxin overload with metals or viruses that triggered this autoimmune response?
In our community we say, "Yeah." We firmly believe the cause of the epidemic of autism is due to a vaccine injury and/or other environmental exposures -- pesticides also. But what on this earth we all kind of share the most is vaccines. This consensus report that just came out, we feel in our community somewhat excited about, because they're acknowledging that there are GI [gastrointestinal] issues associated with autism.
And can I tell you, for years the autism community has been begging and pleading with the medical community that these children with autism have gut issues. And they would turn the parents away in the office saying: "It's just autism. It's just autism. It's just autism. There's no problem. Don't worry. That diarrhea that's happening for six months all day long, that's just autism." They wouldn't connect the dots. And so finally we're going: "OK, see? Once again the parents are right. Listen to us. We're not making this up."
What was your experience of going to the pediatrician so frequently like?
We don't like to see our kids in pain is the problem. To someone who doesn't know bad autism is, [it's] a child that's screaming, tantrums, smearing poop on the wall, up all night, never being able to be touched by Mom.
For a child that you once had, and was saying "Mama" and looking at you, and then to have a child screaming in pain all day long? We're going to get to the bottom of what's wrong. And when we go into the pediatrician's office and we're turned away, and [we're told] that we're crazy, there's nothing wrong with him, it's so frustrating. So my point being, the anecdotal evidence of parents needs to be more respected.
After you found Generation Rescue, did you immediately see yourself in an advocacy role?
The moment that I went online and researched about autism and saw and learned about a vaccine connection, I felt this kind of jolt, honestly, physically throughout my whole body, and said, "Oh." It was almost like I got on the right train right now for my life's purpose. That's exactly what it felt like. I knew that I couldn't do anything about it in terms of being activist quite yet, because my energy was going to be focused on healing my son. So I had no intention of making plans to be an activist for autism until I felt like I got my boy back.
Once I did, the first thing I did was pick up the phone and say, "I'm writing a book." And it was hard, because we already get stared at as celebrities going out, and then to have someone look at your child and judge them? I could have slipped into this world of no one ever knowing Evan had autism.
So I had to take that leap of faith, knowing that Evan will forgive me and knowing it was for the greater good, because I had to share this information. And once I did, I just felt the feedback from thousands and thousands of parents who had the exact same story as I did.
It was their information that first helped you, the ferocity and determination of "mother warriors"?
I'm only standing on the shoulders of those who have come before me, and those thousands and thousands of parents who have experimented on their own children to get to where we are today, so I can give them that information.
I hate that it has to come from me. It shouldn't have to come from what they call a "Playboy playmate." It shouldn't. This information on how to heal autism and how to possibly delay vaccines or prevent autism shouldn't come from me. It should come from the medical establishment. And it takes a group of warrior moms to be able to stand up against any government, so to speak, and say, "Hey, there's something going on here."
And looking at the numbers -- you know, in some states autism has increased 97 percent in four years; on average, 57 percent in four years. Those are huge numbers. And I don't know what number it's going to take for people to wake up and start really listening to what these parents are saying, which is, "We vaccinated our baby and something happened." And when I say "something," I mean a behavior, a trigger. Something different happened to our children, which then led to autism.
Do I know that exact link? No. I don't have that proof. But I've got evidence in Evan. And I've got evidence in thousands and hundreds of thousands of parents all over the world. And these are the mommy warriors that will make change because we have to.
You didn't come after this, but it came after you?
I wanted to be in Jim Carrey comedy movies before I met him. I wanted to be a comedian on Stage 19, yukking it up. I did not want to be fighting the medical establishment. But here I am.
You're the face of Generation Rescue. ... Talk about that responsibility.
The responsibility I feel being the head of Generation Rescue and the face and the activist for autism, I feel like I need to continue to educate moms on how to prevent autism, which we believe is taking into account your family history, educating them on vaccines, which ones might be really smart to do if you're going to travel, which ones might be really smart to wait until they're 11, like a hepatitis B shot; also, going around the country, which I do every year and speak to thousands of moms about how to heal autism. So my purpose, I feel, is just a constant educator to parents on how to heal and prevent autism.
What is your responsibility to the downside of not vaccinating?
You mean a parent who chooses to not vaccinate their child and they get measles? Is that what you're asking?
Or getting any vaccine-preventable illness.
If you ask 99.9 percent of parents who have children with autism if we'd rather have the measles versus autism, we'd sign up for the measles.
I'm not for starting an epidemic of another disease. We just want there to be some type of conversation, once. Sit down with our side, with our doctors and scientists, to take a look at what we're talking about. We're not an anti-vaccine movement. We're pro-safe-vaccine schedule. Until we have that conversation, people are going to think it's an anti- and pro- side.
What about risk analysis, weighing the benefits versus risks?
Look at the stats for some of the diseases versus the stats for autism.
A public health officer told me we can't see diphtheria anymore, but everyone sees autism. What is your reaction?
And you know what? That completely discredits what we're saying, because she's going on the notion that we're saying, "Don't vaccinate at all." And we're saying: "Delay them. Delay them till age 2. Skip some that you might not need."
I think I would have skipped the chicken pox. I had it when I was little. To me, I'm not too worried about Evan dying from chicken pox. There should be some vaccines that we can go, "Hmm, maybe not."
If a parent decides not to vaccinate or to delay a vaccination, it can pose a risk to another child with a low immune system. It must frustrate you to hear that.
It doesn't frustrate me. I can understand where people think it compromises other children who have weak immune systems. I do feel like parents that don't vaccinate should communicate to their playgroups, to their schools, that "My child is not vaccinated, and that's what I believe in," and be sure that a child who is on chemotherapy is not sitting next to a child who's not vaccinated.
What concerns you about private industry working with public health?
Way too much conflict of interest. Like Paul Offit, who profits off of the vaccine he invented [Offit is a co-inventor of the rotavirus vaccine RotaTeq], is the expert on television and on boards to say which vaccines are safe and which vaccines belong on the schedule, including his own. So for us parents, we say: "Can we have an honest board here? Who's policing us and our child's safety when a profiteer is on the board, judging which vaccines should be on the schedule?" To me, that's bullshit.
What are you doing to plant the seed of doubt or ask the questions?
I don't want to plant a seed of doubt. To me, that's not my intention. I want to just have everyone wake up and just have a conversation and look and be open-minded as to what we're saying.
To me, planting seeds of doubt would be exhausting, to try to show the bad guys. If you just simply look at our truth, I think people will see the light of day and see what we're talking about as the truth. But to go around and plant seeds of doubt, to me, is a dead end.
One of the things that I try to do is make people start asking questions, at least to their pediatricians: "What is Jenny talking about? Can you please spend more than seven minutes with me to talk about these adverse effects? And by the way, what is in this shot? Is there mercury still in the shot? You said the raw mercury's removed out of all the shots, but there's a little mercury in this."
People need to have that conversation, and I'm hoping that I can teach parents to know that it's OK to ask these questions, and hopefully my face did allow them to at least bring it up in the room.
Tell me about "Green Our Vaccines" and what you want to happen.
I don't think there is a green vaccine. The purpose in our statement of Green Our Vaccines really is: Let's take a look at our environment. Let's take a look at some of these toxic ingredients and pull them out. Let's take a look at a safer schedule. I mean, our motto was "Too many, too soon" with the Green Our Vaccines march. And like I said, it's not like I'm looking for a Whole Foods version of a shot. We're looking for just a smarter and safer one in that title of Green Our Vaccines.
Some critics say there is no epidemic of autism; it's the definition of autism that has expanded, which increases the number of diagnoses.
First off, in sort of layman's terms, I usually tell people, "Go ask a schoolteacher." I have asked many teachers who have been in the classroom 30 years, and [they] say: "I've never seen anything like it in my life. I have two shadows per class in my school." Shadows are therapists that have to accompany a child who has autism in a typical classroom.
We didn't have that, growing up. I was born in 1972. We had one ADD [attention deficit disorder] kid in a school of 2,000. I didn't see anyone doing this. Why don't we have 1 in 100 men spinning in circles and flapping their arms if the rates didn't go up? I don't see autistic men walking around, but I see plenty of autistic children in the grocery store. So that's my layman's terms for "I see an increase."
Science has looked at mercury, the MMR, and has not been able to prove a link between these and autism. Now we're looking at the combination or the schedule. Why is the target moving? Today it's the schedule of vaccinations.
When I began my crusade for autism, one of the first speeches I gave was: "Is it mercury? Is it the schedule? Is there just too many?" My answer to people and what I've been telling them is, "It's all of the above." We don't know for sure, which is why we keep saying, "Study it." But they won't.
Some parents saw their child only get a flu shot, which has mercury in it, and boom, fall off the wagon -- meaning loss of the ability of eye contact, no more babbling. And this is after one shot.
We've seen children like Evan, who have this, what I believe, the whole schedule we're looking at that caused his regression. We get phone calls from farmers who have children who -- they just sprayed their fields, and their child regressed into autism.
So is it one thing? No. But what is a common factor? It's a toxic overload. And that's why we're kind of screaming, "Study it!" There's never been any study for combination of vaccines, ever. So when I see the experts go on TV and say, "It's safe, it's safe, it's safe," how can you possibly say that? Thirty-six shots on the schedule, none of which have been ever studied for combination.
Are you looking at aluminum, too?
Of course. Aluminum is the other devil, so to speak. It's a heavy metal that's in vaccines much more, I believe, than mercury ever was.
Do you follow Dr. [Bob] Sears' schedule, or are you off vaccines altogether for Evan?
Evan is now 7 years old, so the only shots I think that he would possibly ever require by a school would be what? Now, I would be part of that personal reasons that I would exempt Evan from getting vaccinated. He doesn't receive any flu shots of any sort. And if I had another child, would I vaccinate? No, based on the family history of myself, my ex-husband now, and my son, Evan, that we have autoimmune disorders in our family.
Do you have any?
Oh, yes. After learning so much about Evan's immune dysregulation due to vaccines, looking at my ex-husband's family history and my own, we would be absolute red flags to a doctor that is up to date on the latest research in our community as to say: "You know what, Jenny? Your child should delay vaccines."
Jenny, living in this globalized world, with international travel, having undervaccinated children, how do you weigh the risk analysis?
Evan received the majority of his vaccines. As far as traveling internationally, he won't be going to Africa probably in his whole life, so that's how I kind of decipher his future, telling him kind of what he can and can't do.
What about viruses coming into our communities?
My concern is not so much about any viruses, honestly, Evan will acquire. My major concern is the fevers that he might get from the regular flu. That is much more common and scary to me, because Evan still has his seizure disorder. The last one was over six hours. We had to put him in a phenobarbital coma for three days in order to make him brain-dead so he wouldn't go into cardiac arrest. To me, the common fever scares me.
I'm not so much concerned about taking him overseas and flying him to certain places. My concern is as scary as a sneeze from someone else. That's due to his injury. So my concern lies elsewhere other than diseases.
Can you speak to the risk of viruses coming in and affecting an un- or undervaccinated population?
Obviously, if polio came back with a vengeance, I think the unvaccinated children should get a polio vaccine. But until then, I don't see the harm in skipping maybe a chicken pox or delaying hepatitis B. Or parents, like I said, who have children with autism might take their chances on the measles after witnessing their children regress with autism. ... It's a fear monster, and it's brilliantly played.
What's the top question you'd want to ask the CDC [Centers for Disease Control and Prevention]?
... I've called the CDC myself. I've called [former head of the CDC and now president of Merck's vaccine division] Julie Gerberding -- and to no avail -- [for] her response.
But we want answers to our questions, and they refuse to talk to us. I've tried to talk to the AAP [American Academy of Pediatrics]. I've sat down with one woman and said: "Please come look at our science. Come talk to our doctors and see what we're doing. Take a look at our hyperbaric chamber treatments and our diet and our vitamins." And she basically said to me, "No." So here we are.
It really reminds me of the generation of Lorenzo's Oil. It took a parent to take medicine into their own hands, so to speak, to save their child. And that's what we're doing in this community. I just find it ironic that if you look at something like the swine flu shot -- where they didn't study; they just gave it to the children and said, "We'll look at it afterward to look at adverse effects" -- why are we then criticized in our community for trying the diet without having studies done?
We're doing the exact same thing they are, yet we are so criticized for something we believe is way less dangerous than injecting children. We're taking away milk and wheat, yet we're criticized for it.