By Teresa Conrick
My daughter, Megan, diagnosed sixteen years ago with Autism, has had an intense twelve months of.medical symptoms. I call them "symptoms" but they really are clues as to the true nature of her diagnosis of autism. It began last Fall with seizures, unusual, hormone-related, monthly ones, that had progressed into episodes of behavioral concern. An earlier EEG had showed no seizures but instead, a pervasive and ominous diffuse slowing of the brain waves. Excessive estrogen can trigger mania, agitation and seizures in a typical female, so combine that with a diagnosis of autism and you get a full blown detour into an abyss, frighteningly far, far away from normalcy. More testing had shown "estrogen dominance," another "symptom" in Meg's body. Hormone therapy has not yet stopped the behaviors. Anti-seizure medication has not yet stopped the seizures. An autoimmune diagnosis also has now surfaced, which helped make sense of the increasing irritability, enuresis, plus motor and vocal tics, often screamed out of my lovely daughter's mouth. Her sister, two years younger, has lived in a path of bewilderment, fear and I am quite sure, shame, as the odd and erratic behaviors of her "older", yet really "younger" sister infiltrated our house. No friends or family have been in our home for so long as we have been living a nightmare. The behaviors were not a choice made by Megan, but instead have been a "symptom" of her immune system kidnapping her. For me, it has been a painful reminder of how sinister Autism can be, especially when bacterial and viral infections seem to trigger Meg's body into a twilight zone in which I can't reach her. Was this STILL autism or were we in a new place, like P.A.N.D.A.S. (Pediatric autoimmune neuropsychiatric disorders associated with Streptococci)? It is like watching her regress again, as she did sixteen years ago. Her recent years have been positive for numerous Strep, candida, clostridia, and other viral infections.
It was decided that Meg needed an MRI and a 24-hour, closed circuit televised, EEG. Her neurologist, new since Summer for us, saw how my daughter's behaviors were concerning and listened to my description of aggressions, involuntary movements and vocal tics/yells that I am sure the neighbors down the block could hear. I am thankful that he didn't just see an eighteen year old, severely affected "with autism," and just needing something for the behavioral "symptoms." Going into a hospital with Meg, overnight and away from the safety of home, took my breath away with fear as I thought about it. Meg had a 24 hour EEG at age six but the electrodes were fastened to her head at the hospital, yet we were able to go home with a fanny pack monitor. Other EEGs had been just a few hours long. This EEG was to be video monitored, an important addition as that 24 hour EEG twelve years ago was normal, yet she had just developed generalized tonic clonic seizures at age seventeen. The video would be able to help us determine if there were subclinical seizures causing these scary behaviors.
There were many departments that we had to pass through in our journey. Admissions, Ambulatory Services and then MRI, all before noon. Others were to follow later. More than one (in fact 6 people that day) asked if Meg needed, or if I wanted her to get a flu shot. October in a hospital is a continuous infomercial for Flu and Pneumonia vaccines. I politely declined and wondered if our record had now been flagged, similar to Elaine's from Seinfeld, where it labeled her as a “difficult” patient. I wasn't trying to be difficult but Meg's decline in health started with mercury-containing vaccines and then the fever and full body rash after her MMR significantly hastened that decline with loss of speech, loss of eye contact and loss of relating to us.
Cases: "A" was an 8-year-old boy with attention deficit and chronic tic disorder who developed obsessive-compulsive symptoms within 2 weeks of starting risperidone. When the dose of 0.5 mg tid was discontinued, the obsessive-compulsive symptoms resolved with no return over 8 months of follow-up.
"B" was an 11-year-old girl with mild mental retardation and aggression who was treated with risperidone 1 mg per day. Obsessive-compulsive symptoms suddenly emerged 10 days after starting risperidone and resolved within 3 days of discontinuation. In both cases, streptococcal pharyngitis was ruled out.
Conclusion: Although the mechanism is not clear, these cases add to several other reports concerning the sudden emergence of obsessive-compulsive symptoms and anxiety symptoms in children treated with atypical antipsychotics. Clinicians should be alert to the possibility of these adverse effects in children treated with these drugs"
Being a parent of a child with an autism diagnosis, I have to be ever vigilant on her true medical issues as they explain her behaviors. Risperdal can be used as a band-aid and a bad one at that. We went into the hospital to determine if there was a specific reason, a MEDICAL reason that correlated with Meg's "symptoms." It was found and I pray that the anti seizure medicine will help. The Resident was able to leave as Meg's Neurologist said no other medications would be necessary as the seizures explained what had been happening.
Much to my amazement, as we waited the hours for our discharge, the head of Psychiatry, came into our music-filled room. By then, Meg was done with the hospital and as our nurses, aides and environmental service people had said good bye hours earlier, she was not keen on the wait for the golden ticket out of the medical kingdom. This doctor stared at Meg, and Meg jumped out of the bed, wires finally out after 24 hours. The doctor jumped back, astonished at my daughter's energy and primitive reflexes. She began her well rehearsed speech about how behaviors in autism, and especially Megan, could be alleviated and did I know that? I honestly told her that I was uncertain why she had felt the need to come visit us as our doctor had made it clear to the Resident that Psychiatry was not needed as the EEG told the tale of Meg's behaviors. She looked a bit uncomfortable and eyed Meg as a lost soul that she wanted to capture in some big DSM net, up on the 4th floor. I went on telling her how I had worked in Psych for about twenty years and that I was aware of the many medications. I then couldn't stop myself and went into Meg's medical history, beginning with health complications after vaccines, then an autism diagnosis, immune abnormalities throughout the years, including Strep and viral induced P.A.N.D.A.S., Meg's recent autoimmune diagnosis and some similarities to Lupus and Arthritis. She seemed to change in front of me, especially as I explained Meg's current vocal tics in the bathroom and her grunts from anesthesia-induced gas and constipation. I assured her if I ever felt the need for their assistance, I would seek them out, but my daughter's medical issues explained her behaviors and her attending doctor had also made that clear. I offered my opinion that the many side effects from those psychiatric meds were concerning to me. She knew I was not going to change my mind so she said her good byes and actually seemed to be ok with my decision.
Before we finally left, a well meaning Nutritionist showed up as Meg's blood test showed a lower level of calcium. I wasn't quite sure why she came in to talk menu as we were leaving but then she explained how Meg needed more calcium and that the gluten/casein diet was not offering her enough. I assured her that we knew the levels went up and down based on Meg's food intake and that she had been so sick and really barely eating. She could not tolerate supplemental calcium as it seemed to worsen her behaviors and since calcium, seizures, autism and the brain were all connected, we tried to balance different supplements and foods to give her calcium. I ended with the plan that I would talk with her doctor that treats her immune issues.
Our stay at the hospital was helped much by those people who were kind and really listened to what truly is happening to Megan. Our Neurologist and those who, like him, saw a beautiful girl, unable to talk, with brain abnormalities, pain and confusion, and who needed real medical help. I was disappointed that on our discharge summary there was no mention of Meg's history of adverse vaccine reactions, immune abnormalities and infections, and two, recent, positive antinuclear antibody (ANA) tests showing an Autoimmune process.
I am hopeful that there will be more people, good and honest medical professionals, who will listen and help our fragile canaries.
Teresa Conrick is Contributing Editor for Age of Autism.