Television personality, author, and activist Jenny McCarthy shares her experience of raising an autistic child in her fifth book, "Mother Warriors: A Nation of Parents Healing Autism Against All Odds."
In the follow-up to her New York Times best-seller, "Louder Than Words," McCarthy shares recovery stories from parents across the nation, and how they worked to find their own treatment for their children.
In addition, McCarthy continues the next chapter of her and her autistic son Evan's story, and describes her experience as an autism activist.
To visit Jenny McCarthy's autism Web site, go to www.generationrescue.org
Read an excerpt below and check out other selections featured on "Good Morning America" by clicking here.
Gina Tembenis: Mother Warrior to son Elias
Stan Kurtz had called me in tears one day to tell me about a family he knew of who had gone through hell. When he told me their story I couldn't believe it. I was with Jim at the time and I had to run away while Stan retold me their heart-wrenching story. I didn't want Jim to see me fall apart, yet again. I closed the door to my bathroom and crunched my body into the corner of the room while I pressed the phone even closer to my ear. I finally told Stan that I couldn't take it anymore. I knew I had to set up an interview with this family. There is a reason why Gina is the final warrior in this book and you are about to understand why. ***
My husband Harry and I brought our son Elias in for his four-month wellness appointment. It was December 26, the day after Christmas. My husband was holding him when he got the shots. When the nurse stuck him with the needle my son just stiffened up like a board and screamed. My husband asked, "What did you give him?" and they ran down the list, four shots for nine different diseases. My husband said, halfheartedly joking, "You know what? That would kill an elephant, let alone an infant." Boy, did he hit the nail on the head because when we brought him home, the beginning of the worst had begun.
They gave us the precautionary, "He might run a fever…a little swelling," the usual "blah blah blah" spiel they give.
So the fact that he was fussy when we put him to bed didn't seem so out of the ordinary. He kept waking up. So I kept going in, and checking on him but he was fine. My husband had to go to work in the morning and asked me if we could turn the monitor off. I said, "No, no, no, don't turn it off. Let's just turn it down low so at least I can still hear him." So, Elias finally fell asleep but then I heard him make this weird noise so I got up and started walking towards his room. When I walked in, I saw my boy convulsing in his crib. He was having a full-blown seizure.
I started screaming to my husband and he jumped out of bed and we put a blanket around him and ran out of the house. There was an ice storm happening but we lived really close to a hospital so we didn't even think to call an ambulance. We just grabbed him and jumped into the car. But when we got into the car, it was frozen. This whole time he was still seizing in my arms. I started freaking out and both of us ran to our other car and were desperately trying to get into it.
We finally got in, and foam was coming out of his mouth. I just kept saying to him, "stay with me, stay with me, stay with me."
When we pulled up to the hospital there was a police officer standing outside. We opened the car door and started screaming "Our baby's seizing!" The police officer took him, and we ran in.
I shouted to them, "I think he's having a reaction to the shots, to the vaccines. He got them today." So they brought me over to the nurse and she asked me what the situation was and I said again, "I think he's having a reaction to the vaccines. He got them today."
He had now been seizing 40 minutes.
My husband and I were just freaking out. We were like, "oh my god, can't you get him to stop?" There was a wall of people around him working on him. Harry and I were so scared. They kept saying, "His heart's doing ok, though, he's fine. His heart's doing ok." And we're like, "Make the seizures stop!"
They finally got it to stop, but then he had partial paralysis. Half of his face looked like he had a stroke; his eye, mouth, and whole muscle structure of his face were drooped and the other half was fine. I thought at this point he was dead, I hate to say it. Because everyone just kind of stepped back, walking away, and I'm thinking, "this is not good," especially seeing him in that condition. Then this one nurse went over and moved his thumb, and it's almost as if it pulled the life back into him because all of a sudden his face corrected itself from the paralysis.
I had never been so scared to death. I've never been that scared in my life.
We were in the ICU for 2 or 3 days and when we finally left what I stated to the police officer, to the people registering, to the emergency room staff about the vaccine injury, never showed up in any paperwork.
Nowhere was it noted that it was a vaccine reaction. When we went back to his pediatrician and told him that we believed it was because of the shots Elias received that same day he told us there was in no way a correlation at all between the seizures and his vaccines. He went on and on and told us not to worry and he did such a good job convincing us that we actually believed him. Then it happened again. We vaccinated and he seized and seized. He seized forty five times within this first year. It was during this time my husband stared researching on The University of Google.
We hadn't gotten to the autism point yet but my husband Harry was coming across things such as B vitamin deficiencies and diet and we wanted to present this to our pediatrician because all that is happening at this point is more seizures and all they're doing is either adding in drugs or bumping up the dosages of drugs he's already on.
Elias at this point was reaching certain milestones. He could sit up when he was supposed to, he could walk when he was supposed to but then around this time he couldn't point, couldn't wave, and he was non verbal.
He looked right through us as if we were ghosts. He wouldn't respond to his name being called so we started questioning, could this be autism? With the research we started on Google the signs started pointing in that direction.
We kept saying to each other please don't let it be the "A" word. That's what we called it. The "A" word. We were so scared of it because at that point, everything we read made it seem like it was over. If it was autism, then it's over and done. So we called the children's hospital in Boston because it's one of the leading hospitals. They picked a neurologist for us and we went out there. She examined him and I watched him fail tests and kept doing what we moms do which is defend our children, "Oh, he's just having a bad day today. Maybe that's what it is…because you know, he'll say moo, square, rectangle. He knows all his colors."
The neurologist candy coated her results until my husband asked her to just spill it. "PDDNOS," she said.
We were confused for a second and then Harry asked, "Is PDD autism?" She said, "yes, it is. Here's a folder with info that you might want to read."
We went back to the car and I took the folder and I said, "I'm not looking at that. She's nuts. No way." I went into denial.
A month later Elias had five more seizures, one of which required an ambulance because he kept having seizure after seizure. So we decided to concentrate on getting the seizures to stop rather than deal with the whole "A" word right away.
He ended up with a lot of seizure medication. He was taking four at one time, and could barely walk. He stopped seizing but he was a train wreck. He got to the point where he couldn't move.
I felt so helpless. The whole thing was just so stressful all the time. If he got sick, I would freak out because if he got a fever, boom, he ends up having a seizure [fevers can induce seizures].
He now moved past PDDNOS into the full autism diagnosis.
We started to question everything because nothing they were doing was working. There was only so much we could take watching our son suffer so much. So, we started to take matters into our own hands.
January 2004 was when we found our DAN! doctor, Doctor Lacava. He said to start the diet. The gluten-free, casein-free diet. Then, he ran the battery of tests that we always wanted but were told no by our pediatrician. The heavy metals test, the food allergies, yeast, nutritional, everything, the whole nine yards.
It turned out he had yeast, his zinc level was extremely low and he was deficient in B vitamins and minerals such as magnesium, manganese, chromium. So, we started Super Nu Thera and cod liver oil, eventually an anti fungal to kill yeast, Methyl B12 shots and glutathione.
The first improvement we saw was sleep. I went through hell for almost four years with him being up every night. Then his focus got better and the best part of it all was his seizure count went down. He went from forty-five seizures a year to maybe one or two now.
Then we started him on an anti-viral, Valtrex. When we started him on Valtrex, speech started pouring out of him. We were blown away. Even his teacher at school asked us what we did to him, because he was totally different. He still had processing problems but the improvement with speech was amazing. He was also becoming a real ham. It was this really great comedic charm that he had, a sense of humor. Things were looking up but five months later a mother's worst nightmare unfolded.
He woke up on Thursday morning and he had a sore throat and his voice was hoarse. He didn't have a fever but he sounded hoarse. But then later on in the day, he started to get a fever. And of course I went into panic mode, and jumped on the Motrin. Then his breathing was starting to sound funny. So the next day, I called Harry to tell him to come home because I want to take Elias to the hospital just to make sure he's not getting an infection or anything.
So we went to the hospital and checked in. We went into the waiting room, and he's having a blast, banging on the tables, running around, watching cartoons, playing with stuff. Harry showed up just as we were going into the examining room. They wanted to swab his throat to do a culture so Harry had to hold him to restrain him a bit. After they swabbed him the nurse walked out of the room and Elias started having a seizure in Harry's arms.
So I'm like, "oh shit" and run out to tell them he's seizing. He seizes for thirty seconds and stops. Then he has another one for thirty seconds and stops. Now he kicks into this full-blown thing. They're pulling him off the table and people were all going crazy and swarming the room trying to get the seizure to stop. Fifteen minutes of seizing had gone by and they are pumping in a kitchen sink full of drugs and I'm watching this, shaking, terrified. Then someone called the grief counselors for us and I start freaking out.
They had the respiratory guys in there bagging him, assisting his breathing. He was breathing on his own but he had a lot of the foam and they were suctioning it. And they just kept giving him all of these things.
I leaned down and kept talking to him. I tried my best to hold it together and kept saying to him, "Ok honey, stop, Mommy's here, stop." And they kept giving him stuff and it just wasn't working.
I'm looking at the clock thinking, "ok, it's been 45 minutes," and I'm screaming, "Do something! Come on! What's next?"
They're saying, "Okay we're doing this, we're doing that." Then they hooked him up with Phenobarbital and if this didn't work they were going to have to put him in a coma. So, they gave him the Phenobarbital, and his heart rate continued to be really really really high the whole time. Really high.
So they gave him the second Phenobarbital to induce coma and you could see his seizures start to slow down. Then all of a sudden they look at his heart rate and it comes flying down. The nurse shouted at my husband and me to get out! They literally kicked us out of the room. As we staggered out, we saw the crash cart being wheeled in.
I went numb. We could hear what they're saying about his blood pressure and everything else because we're standing right outside of the room. It was at that moment I had a feeling he wasn't going to make it.
We then heard them shout, "He went into cardiac arrest." Everyone began to frantically work on him to resuscitate him. I couldn't believe this was happening. Then they got him back, but then he crashed again, and they got him back, and he crashed again.
My husband and I stood outside the room in shock at what was unfolding in front of us. People were walking by staring at the room as they passed us like they were all stopping to watch a car accident on the side of the road. It bothered me so much. I was in so much pain.
I closed my eyes and thought, "He's gone now." I brought him in for a stupid sore throat, and here he is, having cardiac arrest, major cardiac arrest. As I looked into the room I saw crush of people and you could read the body language and the facial expressions. I looked at my husband and we both stood there numb. Then, they got him back. They stabilized him. But by the time they rushed him up to ICU they said that he was no longer stabilized. They walked over to us and said, "Do you want to call anyone? We think it's time you started to call your family." The worst thing a mother could hear. I stood at his bedside and looked at my boy. He was on a respirator and tubes were everywhere. All I could think was, "This can't be happening. This can't be happening."
The EEG results came back and they said he was almost brain dead. They said the only hope was that the Phenobarbital, which puts someone in a temporary coma, could cause almost a flat line so to wait and see.
And so we waited and waited and just waited and he never moved. He couldn't hold his own blood pressure anymore so they started giving him all these blood pressure meds and had to keep upping the doses because every time he'd start to fail they would have to up the amount a little more, and a little more every time. Then he couldn't hold his own body temperature and had to have a heat blanket.
He didn't open his eyes, he didn't move, he couldn't pee. He wasn't outputting any urine, which was bad because it means your kidneys are going. So, they called a family conference, and said let's give it twenty-four hours and watch.
Then the other most painful words a mother could ever hear… the nurse said, "And you might want to consider a do not resuscitate." The world stopped. I didn't know what to do with myself. I couldn't take this much pain.
They said within twenty-four hours they were going to do a second EEG and see where he was, but if nothing changed, they were considering him brain dead.
So my husband made them bring in a TV so we could play all of his favorite videos, his favorite music, any books, just to try to stimulate anything.
One of the residents in the neurology department came in the next morning, and she's talking to him like, "Hi, little guy," and he never moved. Then the nurse came in an hour later and checked him out and looked at me and said, "I wish we could do more."
That was when, if we had any hope at all, we lost all hope. She then said, "They don't ever come out of this."
I looked at my boy with a million wires and tubes coming out of him and had them move them all so I could crawl up next to him. I held him for eight hours and I stayed with him until he died. I felt an energy pass through me that made my heart skip a beat. It was an orange energy. I knew it was him.
He was pronounced dead at 12:26. My husband Harry had pointed out to me the significance of that time. We believe all of this happened because of the vaccinations he received at his four-month wellness check up. That date was the day after Christmas… 12/26. Elias died at 12:26. On that vaccination day my husband joked to the doctor that Elias was given enough shots to kill an elephant. Instead it killed a beautiful boy named Elias.
He will forever be in our hearts.
Excerpt from MOTHER WARRIORS by Jenny McCarthy © 2008. Published with permission from Dutton, A member of Penguin Group (USA) Inc. All Rights Reserved.