By Teresa Conrick
On Monday, 4/28/09 at 8:49 a.m. Central Time, I became a member of a group that I hoped I would never have to join, the "parent of an autistic child with seizures" group.
I was at my desk preparing for the day when the phone rang. It was Meg's teacher who spoke quietly as he said those words any parent would doubt, would hope was wrong -- he said, "Meg's having a seizure." My shocked response was ,"Oh no..are you sure?..she was just fine...?" But she was not fine now as he described a vivid picture of my sweet, 16-year-old, hunched over in her seat on the little yellow school bus, drool coming from her mouth and not responding to her name. I would find out later from the bus aide that before I had even received the call, Meg's eyes rolled back, the universal sign that this is a SEIZURE and has the ability to damage or kill its victim. To describe all that happened from that moment forward is a blur of actions and feelings: fear - driving - crying - bargaining - fear - anger - questioning - fear - hoping.....
We called the ambulance when I finally made it to her as Megan's eyes and body were still not her own. She looked scared, confused and unable to move well. It was all a bad dream and soon I would wake up to Meg laughing and running to me. But I never woke up. Our four hour odyssey in the ER included blood work, a cat scan, EKG, and an anti-nausea IV. There was nothing abnormal in the results -- nothing that would explain why a 16-year-old with an autism diagnosis, who had never had a seizure, would have one now, at this age, and with such intensity.
The ER nurses were great and didn't question my concerns with red dye #40 in their popsicles or sugar-free, Nutrasweet treats that they gave to kids like Megan. It was a nice idea but the lack of knowledge about basic neuro-chemical consequences seemed absurd in the present surroundings.
The doctor on duty was young and a bit arrogant. He kept asking if she had a fever or infection and if her behavior was “as good as it gets." I attempted to explain to him that Megan rarely had fevers and that her immune system did not work properly. He looked at me like I had broken the unspoken ER rule of not kissing his feet and saying, "YES", she did have a fever and how brilliant he was for figuring it out.
Instead I explained that she was nonverbal and her stimming on the rubber bands in her hands was not abnormal for her. That was his signal to say, "goodbye and good-luck," as he handed me a prescription for an anti-seizure medication with a referral to a neurologist and then fled for the safety of the nurses' station. It was eerily familiar.
The drive home gave me some time to digest this new incident and its meaning to our understanding of Megan and her autism. Her diagnosis of autism was over a decade ago and the word on the report then was "Idiopathic", meaning, "of unknown cause." I peeked at the discharge papers from the ER and sure enough, the "I" word was there, too. In actuality, these doctors did not want to search for Meg. They did not want to delve into the "why" she has so many abnormal labs of metals, bacteria, and viruses or the myriad effects they produced. They also did not seem to care or wonder if something in puberty is sparking a reaction and causing sick children to become sicker, especially seizures.
I have often looked to the past to explain the present. In 1943, Dr. Leo Kanner wrote his historical paper, "Autistic Disturbance of Affective Contact", in which he described
"a number of children whose condition differs so markedly and uniquely from anything reported so far." One of those children, Elaine, reminds me of Megan. They both were born healthy and walked before 12 months. Speech and language issues began and deafness was suspected but then ruled out. Both had fears of loud noises and ran when the vacuum cleaner came out of the closet, covering their ears. Meg's is so bad still that she chooses construction headphones instead of an Ipod. Both girls had normal EEGs in their younger years.
In his follow-up paper on these children in 1971, Elaine had sadly, spent most of her life thus far in state hospitals. What stood out is this statement by Kanner, "She has epileptic seizures occasionally of grand mal type and is receiving antiepileptics and tranquilizers." That sounds familiar - not having seizures as a child and then developing them post-puberty. Why has no large, ivy-covered institution or large autism organization investigated this? It has become an increasing incidence that children with autism are developing seizures. How is it possible that the medical symptoms observed in children of the 1930's are still occurring today, yet major medical organizations and federal health agencies are not examining them, nor are they examining the actual children in the trenches of the autism epidemic?
Why is Dr. Paul Offit and his newly formed autism organization not looking into the issue of the immune system, fevers, and seizures in autism especially since he is Chief of Infectious Diseases at Children’s Hospital of Philadelphia? Why is he and many others hunting for a gene(s) (HERE) to blame for this epidemic of cases? For years the search has been empty yet that theme continues. Why is he saying,” 'The natural history of mild to moderate autism is that it does get better over time. You're worse between 2 and 5, and you tend to get better between 5 and 10. You mature, and you get better.” Developing seizures as a teen or older is not getting better. Is it because it will avoid the vaccine issue, provide money for marketing prescription medications or worse, a "screening" tool? Many of the children have lessening of their "autism" symptoms as they develop a fever. Why isn't Dr. Offit exploring why this is as it is part of the bacteria-virus-metal (mercury & aluminum)-infection-inflammation-gut-brain issues that many of the children have? Why does my daughter rarely run a fever and could this dysfunctional suppression of fevers cause seizures? Where do mitochondria issues figure into all of this?
I believe that the warning signs in the children, observable on labs, in blood, urine, and stool, represent the suspect in this man-made illness, and Dr. Offit has not investigated why as it brings us all back to the scene of the crime -- vaccines. Fortunately, history also shows us that often times a suspect protests too much and attempts made to obstruct the solving of the crime often indicate that the suspect is no longer a suspect, but a guilty party.
Teresa Conrick has two beautiful daughters. When she is not teaching, she is researching the biomedical implications of autism, both past and present.