These are not my words but were our thoughts in 2001 and so I asked point blank if Janssen and Janssen, makers of Risperdal, was a big donor for the group home because every autistic I knew was on Risperdal and diagnosed "psychotic", its executive director who is a psychologist, very quickly said "no", of course.....
This is the third part of Ann Bauer's story, and those words were her own words between quotations marks.
"In addition, they all warned -- each and every journal article, white paper and scientific treatise -- that the one thing practitioners should never do is prescribe antipsychotic medications, such as Abilify and Geodon, because they will make the symptoms of autistic catatonia much worse. And it might cause permanent damage."
To those two drugs, in my opinion, we should add the rest of their cousins, atypical anti psychotics like Risperdal, Zyprexa, Seroquel, etc., older neuroleptics, anticonvulsants like Valproic acid and Tegretol and the new AEDs like Keppra described as the "rage med", antihypertensives like Propranolol, SSRIs like Prozac and many, many, other drugs some sold over the counter. Lorna Wing and Amita Shah, said if drugs were needed to choose one without parkinsonism adverse effects, but I found such drug is hard to find, even I doubt it exists. Many autistics and NT children are chemical sensitive and dying from an overdose is a possibility, not to mention the unforeseeable brain damage of long-term use of those drugs.
The next question was, if Lorna and Shah recognize drug-induced catatonia in Danny without seeing him, would doctors in Toronto on "seeing" Danny do the same? From all those I went only one approach Danny, moved one his arms and said: "It's not rigid", the rest care little to even look at him. One was so scare of Danny that didn't want him in his office. No help from them.
So, perhaps we thought we are using the wrong word, let's try "Tardive dyskinesia". Is Danny suffering from TD? was the question asked to doctors. Again, confusion, one wrote of "late onset of extrapyramidal side effects". The rest attribute his problems to his "condition".
Then came the episode of June 5th, 1999, in which Danny couldn't stop moving for almost 24 hrs. The answer was "Chinese food syndrome" from MSG. Still that was not a satisfactory answer and we look into another word "dystonia", we sent pictures to several websites describing dystonia and apparently that was it, an acute episode of dystonia brought by Risperdal.
Ann Bauer continues:
"The third thing I found was a Web site that described neuroleptic malignant syndrome, a slow poisoning by prescription that lasts (and this is the part that caught my attention) even after the drug is stopped."
Understanding that I asked the group home physician if Danny was showing symptoms of NMS, he said no. Some doctors believed that NMS is catatonia. NMS shows like fever, muscle pain like having a bad case of the flu and can be fatal if not recognize and treated timely. The average doctor is not familiar with NMS, which is scary.
A study done by the University of Toronto found that these drugs (Risperdal and Zyprexa) "linger in the brain". For how long? "As long as the person has been on them", a friend familiar with drugs told us.
So Ann Bauer found out the "lingering" part of these drugs and the meaning of "tardive" or "late onset".
"Finally, believe or not, we've reached the hopeful, lucky part. Only I didn't know that yet."
"I was crazed. Throughout the early morning hours, I e-mailed people. The retired doctor from Stony Brook, N.Y., who had authored original work on autistic catatonia; a therapists from the Netherlands who claimed to have anew method for treating it; researchers at our local university. Then I went to bed and slept fitfully for exactly one hour and 40 minutes."
"When I awoke, at 7:30, my email was full. The most helpful response came from the gentleman once of Stony Brook, now professor emeritus of both psychiatry and neurology, a genuine mensch, living on Long Island with his wife. "Dear Mrs. Bauer", he'd written at 6:48 a.m., "I know of no one in Minneapolis who understands the connection between autism and catatonia. But the clinicians at Mayo are very knowledgeable. Would you like me to make a referral?" Other messages simply advised me to seek medical attention for my son immediately, to flush the medications from his system. "It sounds as if your son is, indeed, suffering from autistic catatonia," one doctor wrote. "But I believe most of the symptoms you describe are related to the inappropriate use of neuroleptics."
In the year 2000 we also sent emails to doctors describing Danny's "behaviours" or symptoms. Lorna Wing and Amita Shah sent us by snail mail a yet to be published article linking autism and catatonia, in it they described catatonia. Their description fitted Danny's problems in eerie detail. Others recommended Clozapine or Benzodiazepines together with Electroconvulsive therapy ECT.
Ann Bauer continues:
"How lucky can you get? Not only did the world's top expert reach across electronic airspace to help diagnose and refer a perfect stranger, but we happen to live just one hour and 15 minutes from Mayo Clinic, one of three places on earth where autistic catatonia is truly understood. And it's that rare healthcare organization where doctors are not allowed to take kickbacks from the drugs companies. But I'm getting ahead of myself."
"On April 30, my ex-husband and his wife put our son in the back seat of their car and drove like hell the 72 miles to Rochester, Minn. Exhausted after the 90 minutes trip, the three hour wait to check in, the half-year of tracking a drug-addled boy, they walked across the street to a hotel room after checking him into the hospital and had their first uninterrupted night's sleep in weeks."
"Then we drove to Rochester to meet with nine practitioners who'd been called to assess our son. It was an interesting case, they told us -- and instructive. Within three days, they had performed a series of medical tests and evaluations, determining that our son was neither schizophrenic nor psychotic. He was autistic, exhausted, improperly medicated, borderline diabetic, and simple stuck. It would take them perhaps a month to detox his body of all the drugs and treat the underlying catatonia that had dogged him for more than a year."
"This occurs in about 15 percent of all young people with autism," the team told us."We don't know yet why it happens, but we treat it."
Here I interrupt, wondering, what is the percentage of people with autism having a "paradoxical response" to drugs?.... that besides developing catatonia. Specialists that we went to, hoping to help us to reverse the effects of Risperdal and treat its induced catatonia didn't even bother to look at Danny. We find out why soon enough. We told the group home of our intentions, we told the doctors names and dates of the appointments. The group home had been sending ahead the diagnoses made by its physician (and, big mistake, Danny's family doctor until 1999), despite being told to stop it. Told a second time and asked why it continued doing it, a member of administration, simple answered: "we have to". To that I asked: "Even if it's done by a general practitioner... in base of a faulty data?".
This use of "data" to make "psychiatric diagnosis" confirmed what we were told by a caring caregiver, "Anybody can say anything of the autistic and do whatever they want to them and get away with murder".
Later several specialists, psychiatrists not related to the group home, found Danny autistic, just autistic.....
Ann Bauer continues:
"And then they did. Magically, it seemed. On the morning after they began their regimen -- a combination of therapies that they orchestrated like a carefully choreographed dance -- our son awoke and stretched, clear-eyed, to ask us if we'd like to play a game of hearts. And after a slightly shaky start, he shot the moon, gathering all the tricks with controlled sweeps of his right hand, flashing us a shy but satisfied smile."
"Five days later, the New York Times ran a front-page story about psychiatrists in Minnesota who were collecting money from drug manufacturers for prescribing atypical antipsychotics, including Abilify and Geodon. According to the Times, "Atypicals have side effects that are not easy to predict in any one patient. These include rapid weight gain and blood sugar problems, both risks factors for diabetes; disfiguring tics, dystonia and in rare cases heart attacks and sudden death in the elderly."
And, I have to add.....paradoxical reaction, self-injurious behaviour or suicidal thoughts, violence, altered states of consciousness, seizures, abnormal movements, bizarre impulses, incontinence.....before Diabetes Risperdal causes hyperglycemia....muscle spasms so forceful they were like receiving sudden electric shocks throwing Danny's head backwards hard, or sharp pain in the neck while bending down to pull up his underwear or putting his socks. Getting frozen in postures or repetitive movements, interrupted could head butt you and head bang screaming......
Ann Bauer's story continues:
"Side effects like our son's -- almost certainly caused by a unique combination of the drugs and autistic catatonia -- were not explicitly cited. These facts, however were:"
"In Minnesota, psychiatrists collected more money from drug makers from 2000 to 2005 than doctors in any other specialty," the Times reported. "Total payments to individual psychiatrists ranged from $51 to more than $689,000. with a median of $1,750. Since the records are incomplete, these figures probably underestimate doctors' actual incomes."
"By this time, we four parents had resumed our life in Minnesota and were trading visiting days."
"After work on the night the Times article came out, my husband and I got on his motorcycle, puttered through rush hour traffic, then sped down Highway 52, arriving after dinner hour to find our son sitting at the table, playing chess with a nurse. She was hunched over the board, muttering; he was lounging in his chair, leaning back to watch television while he waited for her to make her move. There was a small crowd gathered around watching."
"He's killing her!" a patient named Richard crowed. "He beat her the first time in seven moves and the second time in four."
"The nurse raised her head and grimaced."
"Did you tell her you used to be a tournament player?" I asked, bending to kiss my son's woolly hair."
"Oh, no, I guess I forgot," he said vaguely and slid his eyes at me in a way I recognized from years ago, that quirky boy from long ago."
"After the visit, riding home through rolling farmlands and a scarlet sunset that was cracked with gold, I counted the ways we were lucky. The doctors at Mayo had assured us that our son's prognosis was very good: Even after the treatment was done, he probably would continue to improve and regain most of the ground he'd lost by summer's end. My son's supervisor -- a wise and gentle woman who'd never flinched, even when he was at his craziest -- had called to say that she was holding his job for him, maintaining his health insurance, and hoping for a swift recovery. My husband and my former husband's new wife had parented stalwartly through the very worst of times."
"And there was that one moment, as we leaving, when my son had put his hand on my arm and told me he missed us. He also missed going to Starbucks and walking in the sunshine and he wanted, more than anything, to go outside for just an hour or so. 'You could just lead me out of here,' he said, his face sober as a Lutheran minister's. 'If I walked past the desk with you they wouldn't even see me.' I looked straight up to him, this bearded man who, at 250 pounds is exactly twice my size, and started to tell him I thought the nurses probably would notice. But he reached out and touched my arm, gently, wrapping his fingers all the way around. 'I would only go out for a little while, you know. And later, I could come back. Don't worry, Mom. I can find my way.' "
Next "Autistic Catatonia and ECT" and "The Body Electric" by the same author.
