MEDICAL MANDATES IN AIDS

salon.com—December 7, 1999

Breast intentions

When others make comments about your breast-feeding ...

A Canadian court must decide whether Sophie Brassard must give her children a drug cocktail or lose them to a foster home.

By Alyson Mead

12/07/99

Sophie's choice A Canadian court will decide whether Sophie Brassard must give her children a drug cocktail or lose them to a foster home. By Alyson Mead Sophie Brassard, a 37-year-old single mother in Canada, is scheduled to fight in a Montreal court today for the custody of her two children, 4 and 8. She wants them back. The state wants them placed in permanent foster care. The reason: Brassard, who is HIV positive, has refused her doctor's advice to treat her children, both of them HIV positive, with the drug AZT. She believes it will kill them.

Though the Canadian government has not formally charged Brassard with any crime, it removed the children from her care in July, when she was detained at the Montreal airport while trying to leave the country with her kids. In the course of her custody hearing, the court is expected to decide, for the first time in Canada, whether the state has the power to mandate medical care.

The decision, even though it will come from a Canadian court, is expected to have significant impact in the U.S., where parents who withhold medical treatment from their children, often for religious reasons, have found themselves in court with no legal precedent to guide their arguments. Their opponents struggle in the same void, as decisions tend to vacillate on a state-by-state, case-by-case basis.

Dr. Seth Asser, an associate clinical professor of pediatrics at the University of California at San Diego's School of Medicine, finds the overall emphasis of court rulings in the United States to be "consistent" with his opinion. As a board member of Children's Healthcare Is a Legal Duty (CHILD), his mission, and that of the group, is to "protect children from abusive religious and cultural practices."

"Sometimes the parents have religious reasons, or an adherence to folk medicine to prevent medical care for diseases with viable treatments," says Asser. "But when the reasons are capricious, like wanting to use herbs that haven’t been scientifically tested, the courts generally say that the parents are free to make martyrs of themselves, but not their children."

But more and more often, these battles specifically involve HIV and treatment with antiretroviral drugs -- in utero, in breastfeeding and later in a child's life. Religion, folklore and herbs don't often figure into these arguments and the outcomes have been as unpredictable as the effects of the disease and its still-controversial treatments.

In a custody hearing held in April in Eugene, Oregon, an HIV-positive mother was told by the court that she could not breastfeed her son, who is HIV negative. She was allowed to keep the baby in her home, but he is technically in the state’s custody. In a mildly farcical arrangement, a social worker visits once a week to make sure the child is not breastfed.

Meanwhile, in a case last year that is likely to be cited in Brassard's hearing, Valerie Emerson, a mother in Bangor, Maine, won the right to withhold AZT from her second child after her firstborn, who had been on the drug, died just before her 4th birthday. Though no formal ruling was made about whether the drug killed the girl, Emerson believes that it did and she prevailed in the hearing. (Her son, who still has not taken AZT, is currently healthy.)

The relative merits of AZT, a drug developed 30 years ago as a form of chemotherapy and later found to be potentially effective against the spread of AIDS, will be on trial in Brassard's hearing. But so will her rights as a parent of a sick child. The issue of parental prerogative when a child is gravely ill has fueled years of impassioned and confusing debate in Canada and the U.S. In Brassard's hearing, as in every trial that has pitted parents against doctors and child advocates, each side will claim the same motivation -- saving the lives of ailing children.

"Mentally, I was preparing myself to go to my children’s funerals," says Brassard. "There were times when I wanted to kill myself, but then I realized I had to keep fighting, for the sake of their health."

Ridiculous, says Dr. Mark Wainberg, president of the International AIDS Society in Canada and the inventor of antiretroviral drug 3TC. He maintains that Brassard and other "AIDS dissidents" are comparable to Holocaust deniers. They are, he says, "ill-informed, confused individuals who either do not or cannot understand the issues involved."

Brassard, who found out she was HIV positive in 1989, says that she was both healthy and well-informed when she became pregnant in 1992. She was aware that the chance her infant would be HIV positive was roughly 25 percent in a vaginal birth and 10 percent if a Cesarean was performed. She decided to have the baby.

She also wanted to give birth with the assistance of a midwife. But when her sister found out that Sophie was not planning to have a doctor present, she called Youth Protective Services. Brassard was in the middle of labor when five men -- a social worker, a Youth Protective Services administrator, a doctor and two police -- entered her apartment and forced her to go to the hospital.

Immediately after the birth, a pediatrician came into the room and took the baby away from Brassard for its first formula feeding. When Brassard said she wanted to breastfeed, her physician protested; but Brassard was permitted to nurse the baby for a year and a half.

Brassard avoided the first battle -- over breastfeeding -- primarily because her child was already HIV positive. It is generally believed that HIV can be transmitted to an infant through breastfeeding, and mothers who are HIV positive are advised not to nurse. But not all studies have supported this notion. Brassard and her supporters point to the results of a recent South African study, published in the Lancet in August, which concluded that HIV was not necessarily passed through breast milk. Researchers from the Department of Pediatrics and Child Health at the University of Natal hypothesized that the immune factors inherent in breast milk can work to "neutralize" HIV.

When Brassard’s first child began losing weight at 18 months, her social worker insisted that she take him to a doctor who would prescribe treatment with AZT. But Brassard, who favors homeopathic treatment and believes in self-healing, said no. Ultimately, she compromised with the social worker by taking her son to a homeopathic doctor.

That doctor saw her son once a month for close to a year, but when the child developed a fungus in his mouth, the doctor gave her an ultimatum: Take the child to a specialist or get reported to Youth Protective Services. Brassard panicked. Firm in her belief that people who are HIV positive can live long, healthy lives without drugs, she was terrified that a doctor's intervention would harm her child. If she stayed in Canada, the doctors would give her son AZT, a drug she believed would kill him. So Brassard bought two tickets to Italy and, without telling anyone where she was going, left the following morning. She went underground.

Despite its widespread use and apparent efficacy against the symptoms of AIDS, AZT has remained a controversial treatment that is routinely rejected by those who choose alternative treatments for AIDS. They cite a 1993 Concorde study, the results of which were subsequently printed in the Lancet, in which patients who took AZT died sooner than those who took a placebo. They also point out that AZT is acknowledged, even by doctors who prescribe it, as having side effects that include anemia, muscle wasting, hair loss, neuropathy, dementia, nausea, diarrhea and other digestive problems.

Perhaps the strongest statement against AZT comes from Dr. David Rasnick, a developer of protease inhibitors at the University of California at Berkeley and the president of the Group for the Scientific Reappraisal of the HIV/AIDS Hypothesis.

Asked about the Brassard case he said, "AZT is a DNA-chain terminator. That means it terminates a person's DNA, which stops cell division, which stops growth and, eventually, all life. If her children are forced to take the drug," he says, "they won’t last two years."

But proponents of AZT say the drug has become more effective in "cocktails" mixed with protease inhibitors. David Winslow, who represented the Maine Department of Human Services in the case of Valerie Emerson, told the court that AZT had reduced AIDS deaths nationwide by 47 percent last year.

And in Toronto, Dr. Philip Berger unequivocally recommends antiretroviral drug treatment for patients who are HIV positive, especially the young. "If the drugs are given to a baby within hours of birth, the odds of it developing HIV can be significantly reduced," he says. "The odds are even better if the mother also takes the drugs during pregnancy."

Doctors have to be the absolute custodians of children's care, he says. "Once the child is born," he says, "I think the state has a duty to protect the child from any disease for which a parent is refusing treatment where the benefits are clear."

Brassard says she was aware of all the arguments when she left the country. Using the Internet for much of her research, she found organizations like H.E.A.L. and Alive and Well, two support groups dedicated to sharing information about living healthy, HIV positive lifestyles. She also read articles by Dr. Kary Mullis, a Nobel Prize winner, for his discovery of the polymerase chain reaction, and Dr. Peter Duesberg, who was the first man to map the genetic structure of retroviruses. Both men actively challenge the common thinking that drugs are the best way to treat HIV and AIDS.

"I thought I was the only sane person in an insane world," she says. "But then I found people with Ph.D.s who believed in the same things I did."

Brassard and her son lived outside Rome for two years. She worked odd jobs and says that her 2-year-old boy was happy and healthy. She took him to a doctor only once during that time, for a routine check-up; Brassard herself visited a homeopath as needed. She fell in love and became pregnant again, this time buoyed by the fact that she and her son were both maintaining good health. Eventually, however, her relationship became violent, and she moved back to Canada in 1996.

Brassard’s second child was born at home under the supervision of a midwife. He tested positive for HIV. Brassard breastfed him and things went smoothly for the next year. After a brief stay in Mexico, to escape the scrutiny of Youth Protective Services, she returned to Canada. Shortly after she arrived, she was turned in to Youth Protective Services by a neighbor. Brassard and her children took mandatory blood tests and her doctor again urged her to put the children on the antiretroviral drugs.

Brassard refused to give her children the drugs and took them back to Italy, hoping to resurrect the relationship with her second child's father. It didn't work out and she returned to Canada in 1998. This time, Brassard’s father called Youth Protective Services, after her eldest son, who was 7, developed an ear infection.

The child was hospitalized and put on antibiotics for the first time in his life. The pressure on Brassard from doctors, nurses and her social worker to put both children on drug cocktails, which included AZT, increased. So Brassard made a decision to leave the country for good.

Slowly and discreetly, she sold all of her possessions and sublet her apartment, making sure that her father would not find out. The buyers of her belongings came to collect their purchases the night before Brassard was supposed to depart for Italy. The next day, her apartment was completely empty.

Friends had agreed to help Brassard find schools for her kids in Italy and a job that could support all of them. The trio made it to the airport and past the metal detectors without incident. "I remember thinking, whew, we made it," Brassard says. They were approaching the boarding area when a police officer asked for her ticket. She was detained there until an emergency court could be assembled. Her two children were remanded into the custody of Brassard’s parents.

Brassard went online and found the International Coalition for Medical Justice, a nonprofit organization created to support victims’ rights in cases where they believe coercive medical treatments have been employed. They helped her to find and pay for a lawyer.

Meanwhile, Brassard’s older child developed pneumonia. He was hospitalized and given intravenous antibiotics, but his condition worsened. The doctors prescribed AZT, 3TC and a protease inhibitor. Brassard’s parents raised their concern that the drugs would be too strong for a young child. Brassard’s mother, who is a nurse, thought her opinion would carry weight with the medical staff. But in October, after a flurry of court activity, the children were removed from their grandparents’ care because they, too, had refused to allow the antiretroviral treatment.

Both children, now in foster care, are being treated with a drug cocktail, which includes AZT. Brassard has been allowed one supervised visit each week, in the social worker’s office. She is not permitted to speak with the children by phone anymore, since the social worker overheard her telling one of them to flush the medication down the toilet. (He had complained to his mother that he kept throwing up when he took the medicine, only to be given another dose.) Brassard does not know where the children live. She says that during visits, they tell her they want to come home. Since she was caught at the airport, Brassard has lost her apartment and her job. At the moment she lives on public support in Montreal while she takes college classes in international commerce at College LaSalle. She says, "The horror of this is that my kids are now on one of the most toxic drugs in existence. I have to get them back before any permanent damage is done."

salon.com—December 7, 1999

ABOUT THE WRITER

Alyson Mead is a freelance writer who lives in Los Angeles.

related story:

FORMULA FOR DISASTER

Thanks to aggressive marketing by the companies that produce artificial baby milk, many new parents think infant formula is the next best thing to Mom -- but nothing could be further from the truth.

By Katie Allison Granju

07/18/99

Get out of my bedroom!

The editor of Mothering magazine denounces a new warning against the family bed as the drivel of government terrorists.

By Peggy O'Mara

09/30/99

=================================

=====================================================

==================================

==============================

===============================

===================================

==============================================

=================================================

URGENT ALERT

To: All Physicians who have prescribed Secretin, and

All parents whose children have received Secretin

From: Susan Cislo, D.O.

Date: April 6, 2000

In the State of Florida, if you are a physician who has prescribed or administered Secretin for the treatment of Autism you may be arrested and charged with child abuse. If you are a parent that allowed your child to receive Secretin in an attempt to fight their Autism, you could have your child taken out of your custody and charged with child abuse. The authorities could prevent you from seeing your child. They could also prevent you or the child grandparents from talking with your child. I know. This is what is currently happening to me.

I am a pediatrician licensed and practicing in Florida. I am also the mother of a nine year old boy with Asperger syndrome, Bi-polar Disorder, ADHD, and anxiety disorder. The Asperger syndrome keeps him from correctly interpreting social cues, such as facial expression, tone of voice, and body language. Because of the Bi-polar disorder, he interprets confusing signals as a threat, and responds with inappropriate violence and anger. He has been violent to other children, adults, to me, and to himself.

Due to the severity of my son illness, in July of 1999 I had to place him in a group home for intense therapy and behavior modification training. The program was helping, but unfortunately that program was closed down in September of 1999 by the State of Florida due to a lack of funding. There was no other community program, and my child behavior made it not safe to him and others to keep him at home. With no where else to go, after a couple of weeks at home a state senator got my child admitted into another program, Kids in Distress. However, this program is aimed at abused and abandoned children.

The staff of Kids in Distress was uncomfortable with my son because he was the only child there on a voluntary basis. They are not used to parents who still retain a interest in their children or who still have custody of their children. I insisted on being included in decisions concerning my son treatment. They felt resentment at having to answer to me, especially when I disagreed with them. They behaved as though they believed my son could not possibly be so ill unless I had abused him or neglected him. Whenever I complained of their treatment of my son or myself, they told me to take my son out of there (knowing there were no other programs to treat him).

Sometime in November, 1999, my son’s psychiatrist at Kids in Distress spoke with me about Secretin, to possibly improve his Asperger Syndrome. The psychiatrist told me she wasn’t that knowledgeable about Secretin. However, she gave me the names of several people to talk to who were familiar with its use in Autism. Over the next five months I researched Secretin. I obtained the Autism Research Institute booklet by Bernard Rimland, Ph.D. I have spent hours researching Secretin on the Internet. I spoke to practitioners and parents with experience with Secretin. I brought my son to a local physician with experience with Secretin who would have administered it to my son, but had used up his supply. The only question was if my son would be one of the hundreds of children who responded to Secretin and improved.

Everyone I conferred with agreed that there was nothing to lose and everything to gain, and that I should try Secretin with my son. All the physicians felt that Secretin had been used for years with safety and that it wouldn’t hurt my son. After all, there are no side effects or drug interactions. I was able to obtain a dose of Secretin. Since my son was home every weekend, I decided to administer it on A Friday evening, so I could watch him closely over 48 hours to make certain there were no adverse reactions. On March 17, 2000, I gave the Secretin to him following the published protocol. He did fine, with no apparent ill effects. On March 20, 2000, at our regular session of family therapy at Kids in Distress, my son told the therapist about receiving the Secretin. His therapist reported me for child abuse. The Department of Children and Family Services took my son into protective custody two days later. They have not allowed me to see my son or speak with him, despite the court order permitting visitation. They are playing games with my sons mental health.

Kids in Distress refused to coordinate a visit with my son, stating it was the responsibility of the Department on Children and Family Services. After their legal representatives originally said this should be no problem, they later said a visit couldn’t be arranged because there wasn’t anyone available from Kids in Distress to monitor me. This happened despite the fact that this weekend was my birthday and my son had expressed how important it was to him to be with me for my birthday. If there is no one there to monitor me, who is watching the children?

I believe the timing was deliberate because the staff of Kids in Distress knew I was required to go out of town on Wednesday, March 22, 2000 for a seminar. They knew even if he went home for the weekend he would not be seeing me as my parents were flying down from New Jersey to care for him. In fact, they beeped me as I was boarding the plane. When I answered the page, an investigator from the Broward County Sheriffs Department informed me that my son had been taken from my custody because I gave him Secretin, and there would be a shelter hearing the following afternoon. Although the petition was filed two hours before the hearing, they would not give the petition until after the hearing was over. The judge hearing the case on an emergency basis would not grant a continuance (even though my son wasn’t in any imminent danger). The judge also stated that she didn’t have time to accept any evidence in my defense (which violates Florida statutes) and told my attorney to instead file a motion requesting a rehearing.

The judge temporarily took custody of my son away from me. The judge also ordered I could have supervised visitation with my son. The petition alleges that Secretin may cause a chemical reaction. The psychiatrist at Kids in Distress has my son on five other drugs (none of which interact with Secretin--but interestingly enough dangerously interact with each other, and exacerbated different symptoms of my son’s illnesses). The petition falsely alleges that doctors have advised me that the child does not need the secretin medication and also that I have been administering secretin to the child against his doctors orders. This is outrageous in several ways. First, when I voluntarily placed my son in residence at Kids in Distress, I never surrendered custody, the right to make decisions as his mother, or the right to be my sons primary doctor and oversee his care. Second, as a pediatrician licensed in Florida, I do not need another doctors permission or approval to give my son Secretin. Despite this, as a precaution, I sought other opinions that were more objective. No doctor has ever told me not to administer Secretin to my son. Quite the opposite is true.

On March 22, 2000 the psychiatrist at Kids in Distress wrote a letter admitting that she suggested I research Secretin for use on my son, but she couldn’t recommend it (of course not, she wasn’t familiar with Secretin). It was mailed March 27, 2000 (four days after the hearing) and wasn’t given to my attorney until after the hearing. This was the State’s evidence that Secretin should not have been given. We had the good fortune of having Dr. Sidney Baker (who is associated with The Autism Research Institute) come to Florida and volunteer for deposition on my behalf while he was on vacation. He was appalled and disgusted with these court proceedings against me. He thought my approach had been extremely conservative, and that I did much more than was necessary to safeguard my son before, during and after the infusion. Unfortunately, the State may file an objection to this deposition they refused to attend and I may not get a chance to use it.

More important than the threat of prison for child abuse or losing my license (which is my sole way of supporting my son), the actions of Kids in Distress and the Department of Children and Family Services may have permanent effects on my son. One of my sons greatest fears is that he may be abandoned while in a group home. He also suffers from severe separation anxiety from me. They have made his worst nightmares come true. It will probably take years to undo the damage they have done to my son in the guise of helping him. They also will not let my parents (who live in New Jersey). My parents have not been charged with anything. Nor will the staff at Kids in Distress tell me how my son is doing or what he has been told. I have learned from his school that he has started deteriorating psychologically when he found out that he was taken away from me.

This situation is a potential threat to every physician who has or will administer Secretin to treat Autism. It is also a threat to every parent who has allowed Secretin to be administered to their child. My attorney tells me that to successfully prove their claim of child abuse against me, they must show the Court that Secretin is a dangerous drug. Accordingly, I need your help. Please send letters, faxes, postcards, telephone calls, or whatever you feel is appropriate to anyone you can from Florida Governor Jeb Bush to the Judge:

Hon. John A Frusciante, Broward County Courthouse, 201 S.E. Sixth Street, Room 910 B, Ft. Lauderdale, Florida 33301.

If the state decides to proceed forward, I will be arraigned on May 3, 2000 at 4:30 P.M. in room 910 B of the Broward County Courthouse. I would appreciate any and all protest of this outrageous behavior to appear. I will notify you prior to that date if sanity should return to this world and these proceedings are dismissed. If you have any questions, please don’t hesitate to contact my attorney, Morrie I. Levine, Esq., at 2450 Hollywood Blvd., Suite 100, Hollywood, Florida, 33020, tel.:954-925-9000, fax:954-925-9008.

I thank everyone in advance for any and all assistance you might provide us. Below are some addresses, phone numbers and e-mail.

Sincerely. Susan Cislo, D.O.

Hon. Kathleen Kearney, Dept. of Children and Family Services, 1317 Winewood Blvd., Tallahassee, FL32399-0700, 850-487-1111 Hon. Jeb Bush. The Capitol, Tallahassee, Florida, 32399-0001 fl government@eog.state.fl.us

-----Original Message----- From: NLeGendre@AOL.com <NLeGendre@AOL.com To: TGuppy@lgc.com <TGuppy@lgc.com Date: Friday, April 28, 2000 2:42 PM Subject: [Hear-Their-Silence] URGENT IN FL

Dear concerned autism parents,

I want to update you all on a surprising twist to the Susan Cislo case presently in the FL courts concerning the mom/ doctor who infused her Asperger’s son with secretin. Many of you are aware that Susan has been denied visitation rights with her son, effectively loosing custody of Andrew because she chose to administer secretin upon her own authority. Because a physician can choose to administer any FDA approved, "off label" drug at their discretion and because secretin is, in fact, a legal, FDA approved drug for GI diagnostic purposes, her actions are entirely legal.

An arraignment will take place in the FL courts on Wed., May 3rd (details below). In the meantime, staff members at Andrew’s school have filed an additional complaint. They are now claiming that they can’t keep Andrew in his present placement, specifically because they can’t work with his mother, Susan Cislo. Effective in 30 days, a new placement must be made for Andrew. If Susan wins her case on 5-3, Andrew goes home. If Susan loses, then Andrew must be placed in foster care.

Susan’s son, Andrew, has a co-diagnosis of Bi-polar Disorder, ADHD, and anxiety disorder. The mix with Asperger’s is highly complex. This is a child for whom unpredictable change is very definitely a stressor of huge magnitude.

Susan writes, <<The staff of Kids in Distress was uncomfortable with my son because he was the only child there on a voluntary basis. They are not used to parents who still retain a interest in their children or who still have custody of their children. I insisted on being included in decisions concerning my son’s treatment. They felt resentment at having to answer to me, especially when I disagreed with them. They behaved as though they believed my son could not possibly be so ill unless I had abused him or neglected him.

For complete details search: http://www.feat.org/search/news.htm for April 10th

Another name/address to include in your letter writing efforts:

Judge Kathleen A. Kearney Secretary Florida Department of Children and Families 1317 Winewood Boulevard Tallahassee, Florida 32399-0700

RE: In the Interest of Andrew Stevenson, d/o/b 2/15/91, In the Circuit Court of the 17th Judicial Circuit in and for Broward County, Florida, Case No. 2000 CJ-DP

Legislature’s Website: http//www.leg.state.fl.us Please send letters, faxes, postcards, telephone calls, or whatever you feel is appropriate to Florida Governor, Jeb Bush and the presiding judge in this case:

Judge: Hon. John A Frusciante, Broward County Courthouse, 201 S.E. Sixth Street, Room 910 B, Ft. Lauderdale, Florida 33301. ***Susan Cislo will be arraigned on May 3, 2000 at 4:30 P.M. in room 910 B of the Broward County Courthouse.

Money to cover legal fees can be sent to Dr. Cislo’s attorney: Morrie I. Levine, Esq., 2450 Hollywood Blvd., Suite 100, Hollywood, Florida, 33020 tel: 954-925-9000, fax: 954-925-9008.

-----Original Message----- From: CTigyrlily@cs.com [mailto:CTigyrlily@cs.com] Sent: Friday, April 28, 2000 8:01 PM To: denisek1@ispchannel.com Subject: (no subject)

Dear Denise,

I understand the reason there has not been an outcry from the parents in Florida is because they are afraid they will be next. What they don’t understand is that this is being decided in the Florida courts Wednesday 5/3 at 4:30. IT WILL SET LEGAL PRECEDENT FOR THE USE OF SECRETIN IN FLORIDA.

If I lose, secretin will legally be child abuse. The doctors who advertise on the net that they give secretin can be gone after and then their records can be subpoenaed. The state has filed a petition for permanent custody. And the group home is discharging Andrew because "they can’t work with me" Therefore, if I lose on 5/3, my son goes to a foster home, and secretin may be unusable for autism in Florida. Silence is a vote for them. My attorney wants protesters--anyone who can come outside the Broward County courthouse Wednesday afternoon. If no one is there, then they can also keep quiet when they have to go out of state to get secretin. Thanks for any help you can give to pass this along. Susan Cislo

Arraignment of Fla. Doctor Mom who Gave Son Secretin, From NLeGendre@aol.com

Dear concerned autism parents,

I want to update you all on a surprising twist to the Susan Cislo case presently in the FL courts concerning the mom/ doctor who infused her Asperger’s son with secretin. Many of you are aware that Susan has been denied visitation rights with her son, effectively loosing custody of Andrew because she chose to administer secretin upon her own authority. Because a physician can choose to administer any FDA approved, "off label" drug at their discretion and because secretin is, in fact, a legal, FDA approved drug for GI diagnostic purposes, her actions are entirely legal. An arraignment will take place in the FL courts on Wed., May 3rd (details below). In the meantime, staff members at Andrew’s school have filed an additional complaint. They are now claiming that they can’t keep Andrew in his present placement, specifically because they can’t work with his mother, Susan Cislo. Effective in 30 days, a new placement must be made for Andrew. If Susan wins her case on 5-3, Andrew goes home. If Susan loses, then Andrew must be placed in foster care.

Susan’s son, Andrew, has a co-diagnosis of Bi-polar Disorder, ADHD, and anxiety disorder. The mix with Asperger’s is highly complex. This is a child for whom unpredictable change is very definitely a stressor of huge magnitude.

Susan writes,

"The staff of Kids in Distress was uncomfortable with my son because he was the only child there on a voluntary basis. They are not used to parents who still retain a interest in their children or who still have custody of their children. I insisted on being included in decisions concerning my son’s treatment. They felt resentment at having to answer to me, especially when I disagreed with them. They behaved as though they believed my son could not possibly be so ill unless I had abused him or neglected him.

"I understand the reason there has not been an outcry from the parents in Florida is because they are afraid they will be next. This is being decided in the Florida courts Wednesday 5/3 at 4:30. It Will Set Legal Precedent For The Use Of Secretin In Florida. If I lose, secretin will legally be child abuse.

The doctors who advertise on the net that they give secretin can be gone after and then their records can be subpoenaed. The state has filed a petition for permanent custody. And the group home is discharging Andrew because ‘they can’t work with me’ Therefore, if I lose on 5/3, my son goes to a foster home, and secretin may be unusable for autism in Florida. Silence is a vote for them. We need protesters--anyone who can come outside the Broward County courthouse Wednesday afternoon." Outside Florida: For complete details search: http://www.feat.org/search/news.htm for April 10th

Another name/address to include in your letter writing efforts: Judge Kathleen A. Kearney Secretary Florida Department of Children and Families 1317 Winewood Boulevard Tallahassee, Florida 32399-0700 RE: In the Interest of Andrew Stevenson, d/o/b 2/15/91, In the Circuit Court of the 17th Judicial Circuit in and for Broward County, Florida, Case No. 2000 CJ-DP

Legislature’s Website: http//www.leg.state.fl.us Please send letters, faxes, postcards, telephone calls, or whatever you feel is appropriate to Florida Governor, Jeb Bush and the presiding judge in this case: Judge: Hon. John A Frusciante, Broward County Courthouse, 201 S.E. Sixth Street, Room 910 B, Ft. Lauderdale, Florida 33301.

***Susan Cislo will be arraigned on May 3, 2000 at 4:30 P.M. in room 910 B of the Broward County Courthouse.

Money to cover legal fees can be sent to Dr. Cislo’s attorney: Morrie I. Levine, Esq., 2450 Hollywood Blvd., Suite 100, Hollywood, Florida, 33020 tel: 954-925-9000, fax: 954-925-9008.

—End Note: Susan Cislo had subsequently been acquited and obtained custody of her son.

================================================

===========================================

====================================================

=================================================

—————————————————————————————————

=========================================

============================================

May 2000

Alexander Cockburn’s chilling description of the militarization of American law enforcement ("Waking Up To a Police State," 5/3), warranted by the "war against drugs," brings to mind another war, a war that Bill Clinton assigned last week to the National Security Council, a war against women and children, a war of drugs, one in which the state has been given free rein even by observers as astute as Cockburn.

In November of 1998, in Maine, Valerie Emerson–having watched her "HIV positive" daughter die from AZT poisoning–won a unanimous ruling from the state Supreme Court granting her the right to raise her son free from the same toxin, mandated by state health officials. Last year, in Oregon, Kathleen Tyson was commanded by a court to cease breastfeeding her son. State agents regularly visited her home to monitor the baby for deviant behavior, such as the desire to suckle.

A mother in London recently went "underground" to raise her infant free of state poisoning. All this warranted by the "war" against AIDS, a war that the Clinton administration declared two weeks ago in response to a threat to U.S. "National Security," not only domestically, but in India, China and virtually all the African states. Thus the 15-year "drugs into bodies" onslaught that has been waged against gay men in the West has under Clinton become a campaign against women and their infants across the globe.

The president of South Africa, Thabo Mbeki, has convened a panel of dozens of scientists from around the world to examine the definition and causation of AIDS and the toxicity of AIDS medications. In a recent letter addressed to President Clinton and other world leaders, Mbeki said what long ago should have been shouted by progressives everywhere: "People who otherwise would fight very hard to defend the critically important rights of freedom of thought and speech occupy, with regard to the HIV/AIDS issue, the frontline in the campaign of intellectual intimidation and terrorism which argues that the only freedom we have is to agree with what they decree to be established scientific truths."

Health, too, is being militarized, with a corps of university-credentialed psy-ops spreading fear and an arsenal of toxic and lucrative drugs–and with the critics of state power, both left and right, AWOL.

Frank Lusardi, Manhattan

http://www.nypress.com/content.cfm?content_id=1942&now=05/16/2000&content_section=1

==============================

Date: Sun, 04 Mar 2001

"Public school administrators, long the enthusiastic adherents of a "Just Say No!" policy on drug use, appear to have a new motto for the parents of certain tiny soldiers in the war on drugs: "Medicate or Else!" It is a new and troubling twist in the psychiatric drugs saga, in which public schools have begun to issue ultimatums to parents of hard-to-handle kids, saying they will not allow students to attend conventional classes unless they are medicated.

IN THE MOST extreme cases, parents unwilling to give their kids drugs are being reported by their schools to local offices of Child Protective Services, the implication being that by withholding drugs, the parents are guilty of neglect."

http://www.msnbc.com/news/534034.asp?bt=msn

Just say yes to Ritalin!

Are parents being pressured to medicate their kids?

Jean Mayes describes how life is while her son, Alex takes the medication

Ritalin.

By Lawrence H. Diller, M.D.

SPECIAL TO MSNBC

Feb. 27 — Public school administrators, long the enthusiastic adherents of a "Just Say No!" policy on drug use, appear to have a new motto for the parents of certain tiny soldiers in the war on drugs: "Medicate or Else!" It is a new and troubling twist in the psychiatric drugs saga, in which public schools have begun to issue ultimatums to parents of hard-to-handle kids, saying they will not allow students to attend conventional classes unless they are medicated.

With a 700 percent increase in the use of Ritalin since 1990, parents have been repeatedly told that their kids probably have ADHD and that Ritalin is the treatment of choice.

IN THE MOST extreme cases, parents unwilling to give their kids drugs are being reported by their schools to local offices of Child Protective Services, the implication being that by withholding drugs, the parents are guilty of neglect.

At least two families with children in schools near Albany, N.Y., were reported by school officials to local CPS offices when the parents decided, independently, to stop giving their children medication for attention-deficit hyperactivity disorder. (The parents of one student pulled him from school; the others decided to put their boy back on medication so that he could continue at his school.)

Meanwhile, class-action lawsuits were filed in federal courts in California and New Jersey, alleging that Novartis Pharmaceuticals Corp., the manufacturer of Ritalin, and the American Psychiatric Association had conspired to create and expand the market for the drug, the best known of the stimulant medications that include the amphetamines Adderall and Dexedrine. The suit appears to be much like another lawsuit brought against Novartis in Texas earlier this year.

As a doctor with a practice in behavioral pediatrics — and one who prescribes Ritalin for children — I am alarmed by the widespread and knee-jerk reliance on pharmaceuticals by educators, who do not always explore fully the other options available to deal with learning and behavioral problems in their classrooms. Issues of medicine aside, these cases represent a direct challenge to the rights of parents to make choices for their children and still enjoy access to the public education they want for them — without medication. These policies also demonstrate a disquieting belief on the part of educated adults that bad behavior and underperformance in school should be interpreted as medical disorders that must be treated with drugs.

Unfortunately, I know from the experience of evaluating and treating more than 2,500 children for problems of behavior and school performance that these cases represent only a handful of the millions of Americans who have received pressure from school personnel to seek a "medical evaluation" for a child — teacher-speak for "Get your kid on Ritalin."

Most often, evaluations are driven by genuine concerns first raised by a teacher or school psychologist. But too frequently the children are sent to me without even a cursory educational screening for learning problems. With a 700 percent increase in the use of Ritalin since 1990, parents have been repeatedly told that their kids probably have ADHD and that Ritalin is the treatment of choice. More and more often, the parents who buck this trend are being told they must put their children in special restricted classrooms or teach them at home.

Patrick and Sarah McCormack (not their real names) came to my office in a panic last year because a school wanted them to medicate their 7-year-old son. Sarah tearfully explained that the principal and psychologist at Sammy’s school in an upscale Bay Area town were absolutely clear that the first-grader should be on Ritalin. An outside private psychologist who had previously tested Sammy did not find any learning problems but concluded that he had ADHD and was defiant of authority. She suggested medication. The school psychologist, in his report on Sammy, was straightforward in recommending "psychopharmacological therapy" for the child.

The McCormacks were told, in no uncertain terms, that unless Sammy’s behavior changed, he would be transferred to a special class for behavior-problem children at another school or the McCormacks would have to consider alternatives to public education like home schooling.

Pro: Effective treatment of ADHD

Patrick and Sarah had few problems with their son at home, though they conceded he was a "handful" and sometimes had problems getting along with other children. They deeply valued his outgoing personality and feared that Ritalin would change him. They also worried about the immediate and long-term side effects of the drug. They acknowledged that Sammy struggled at school but felt school personnel had not done enough and were using the wrong approaches with their kid. They hoped he could continue at the neighborhood school where he had made friends despite his problems. They wanted my opinion and support for their point of view at the school.

When I met Sammy in my office, he was full of life and reasonably focused, chatting at length about activities at home and at school. Though he was in first grade, he could read at a fourth-grade level. I got a better picture of his problems when I met him with his parents. When they were there he acted impulsively, getting up and down from his seat and moving about the room when we tried to have a family conversation. Sammy regularly interrupted his parents and bossed them around, especially Sarah.

His lack of respect troubled me, but I felt optimistic that Sammy could be successful without medication, especially after I spoke with his teacher. She was more positive about him than others who had reported on his conduct at school. She felt he had made progress in her classroom but still wondered how she could help him better stay on task. She was open to ideas. I suggested that Sammy be immediately rewarded for good behavior and given chips for finished work that could be exchanged for prizes at the end of the day. She was comfortable with giving him tangible consequences for not meeting her expectations. Health Library: Children’s health

I suspected that medication would probably help with Sammy’s self-control, but, as I told the McCormacks, it was not absolutely necessary. I told them that children of Sammy’s age never become addicted and that the drug’s effects on his behavior would last only four hours per dose. But it was more important that they work on their parenting, and I referred them to a counselor. I couldn’t say for sure whether changes at home and school would make the difference for Sammy, but I certainly felt it was up to the parents to decide on the medication. I said I would support their decision either way.

A year later the McCormacks returned, frustrated and embittered. Sammy had a very good end to first grade, but second grade with an unsympathetic, unyielding teacher had been disastrous. The principal and school district were now insisting that Sammy be on medication if he was to stay in a regular third-grade classroom. The school said it "could not meet the child’s needs within the regular classroom setting without medication." He was disrupting the classroom. Other parents had complained about his behavior. A one-on-one aide assigned to Sammy had not worked. Sarah thought the aide was nothing more than a snitch who regularly recorded Sammy’s misdeeds for the principal.

If the family refused to give Sammy medication, the boy would be transferred to a different school, a bus ride from their home, to be in a special class with four other "disturbed" children. They could also home-school him or challenge the school’s decision in a hearing. Ultimately they could go to court, but a final decision could take years — by then Sammy might be in middle school. The parents were loath to move Sammy to a new school. However, they still were against using medication with their son.

Families like the McCormacks, who reject medication and face a loss of access to conventional public school classrooms, are increasing in numbers. In May, I testified before a congressional subcommittee hearing on ADHD and Ritalin organized by several congressmen who had received letters from distressed parents pressured by their local schools to medicate their children. The pressure has become so intense in some areas that resolutions urging teachers to restrain from recommending medical evaluations and Ritalin for students are under consideration in several states. One passed recently in Colorado.

Yet even as the issue of parents’ rights is being considered in some areas, the stakes have dramatically increased in others, where schools are seeking the intervention of CPS to get parents to medicate their kids. It is no longer simply an issue of which school or which class a child will attend. Instead, some parents are being threatened with the possibility of losing custody of their children if they refuse to comply with suggested treatment for an alleged medical condition.

Many doctors and educators would agree that withholding medication can be viewed as a form of child abuse or neglect. Dr. Harold Koplewicz, vice chairman of the New York University Child Study Center, said on "Good Morning America" last month that he felt a CPS referral was justified when a family refused to medicate a child for whom a diagnosis of ADHD had been made by an experienced evaluator. "Ritalin is simply the best treatment for this disorder," he said.

I can’t agree. It is true that the courts have ordered medical intervention when a child’s life is threatened. Judges have overruled the wishes of Christian Scientist parents not to give antibiotics to children who face life-threatening infection. Similarly, blood products have been given to children in surgery over the objections of Jehovah’s Witnesses. But those situations are quite different from ones in which ADHD is diagnosed and Ritalin is prescribed, according to Dolores Sargent, a former special education teacher now practicing family law in Danville, Calif.

"ADHD children and families do not face immediate life-threatening situations," she says, "and ADHD continues to be a ‘disease’ with multiple causes and no definitive markers. It’s unlikely any decision that insists on the use of Ritalin for ADHD could withstand a court challenge."

The existence of effective alternative treatments makes any forced decision to medicate children against parents’ wishes both legally and ethically shaky. Yet, the willingness of some CPS workers to pursue families unwilling to dose their children shows how strongly entrenched medication for behavior problems in children has become in our country.

A local CPS office cannot demand that a child be medicated — yet — but it can ascertain whether a child is safe in his or her parents’ home. Legally, CPS can alert parents that their child’s uncontrollable behavior, which puts the child at significant risk of abuse at home, must change. If they feel this advice is not being taken, the agency can remove children from their homes.

What seems to be overlooked in this simplistic, and seemingly convenient, way of dealing with hard-to-handle kids is that alternative strategies to medication exist, from family counseling to short-term respite care. The perceived superiority, rapid onset and inexpensive nature of Ritalin make it a very attractive choice for school administrators, who may pressure parents of students who threaten to drain their beleaguered schools of time or money. As more and more families opt for the Ritalin fix, it becomes easier to insist that other families in similar situations try the drug, even though these families may not want their kids to take stimulants.

I still prescribe Ritalin, but only after assessing a child’s school learning environment and family dynamics, especially the parents’ style of discipline. But I continue to ask questions about Ritalin in a country where we use 80 percent of the world’s stimulants. I have no doubt that Ritalin "works" to improve short-term behavior and school performance in children with ADHD; however, it is not an equivalent to or substitute for better parenting and schools for our children.

I was surprised to see Surgeon General David Satcher quoted recently as saying that he believes Ritalin is under-prescribed in our country. I participated in last week’s Conference on Children’s Mental Health sponsored by his office and found that Ritalin is thought to be both under-prescribed and over-prescribed, depending upon the community being assessed and its specific threshold for ADHD diagnosis and Ritalin treatment.

Data shows, for example, that African-American families use Ritalin at rates one-half to one-quarter of their white, socioeconomic peers. Asian-American youth are virtually absent in statistics for Ritalin use. I happen to believe that Satcher’s comments were intended for these communities and, ironically, will not have any impact on them. Instead, I think, his statement will have perverse impact on white middle- and upper-middle-class families. In some communities, Ritalin use among boys in this group is as high as one in five.

After much agonizing, Sammy’s parents decided to put him in a special education class rather than give him Ritalin and, for the moment, things are going well for him. But they plan to move from the Bay Area, largely because of Sammy’s school experience.

With 4 million children taking Ritalin in America today, there are undoubtedly millions of other parents struggling with the decision of whether to medicate their children. The McCormacks’ story demonstrates the dilemmas and pressures many of these families face. Proponents of drug treatment for children’s behavior problems applaud those parents who choose Ritalin to improve their children’s learning experience. But civil libertarians — and doctors like me — worry about the specter of more families being forced against their will to put their children on psychiatric medication. These families, and their right to make choices for their children, deserve our support and protection.

————— "Just say yes to Ritalin!" by Lawrence H. Diller, M.D. first appeared in Salon.Com on September 25, 2000.

=====================================================================

 

 

==============================

From: "Julie Abbott" <JulieAbbott@msn.com>

>Date: Wed, 28 Mar 2001 20:16:18 -0600

I just now have the time to tell you a little about my problem.

I had a premature infant, 30wks 2lbs 61/2oz. Everything was fine til a week after we got home. We went to the dr on a mon for a well baby visit (2 mth) and had 3 (DTaP, HIB, Prevnar) of the 5 (IPV, Hep B). That wed we ended up in the hospital, respiratory distress. They said he refluxed at got aspiration pneumonia.

Got synagis shots, still got RSV.

(4mth well check 1-3-01) received 4 shots (DTaP, HIB, IPV Prevnar) on 1-7-01 took him in to the hospital for what was a lump on the side of his head. After CT scan they said he had bleeding. Later said he had subdural hemmorages and retinal bleeding, and skull fracture. How? we asked ourselves. They said the only way this is possible is from SBS (Shaken Baby Syndrome). Wrong!!! From what I have read under retinal bleeding court cases after searching for answers, because there is NOOOOOO way we would even think of doing this, I found that vaccines can cause reactions similar to that of SBS.

After reading the story of Alan R Yurko, he mentioned lot #’s for vaccines (HOT lot). How do you find out these #’s.

Any help or insite. We are going through a similar court battle over this, and any information that can be provided that might help would be appreciated as well as the prayers.