Sept. 29, 2008 — -- 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.
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.