A MadMother: We Have a Duty To Protect Children

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The recent reports by ABC News and the Senate Hearing on December 1, 2011, which was presided over by Senator Tom Carper, are the latest of many investigations and hearings into psychiatric drugs being used on foster children.  But the fact is that the indiscriminate use of psychotropic drugs prescribed off-label is widespread, and not limited to children in foster care. Children who live with their parents often have the same safety and protection issues as children in foster care and experience equally harmful effects from the drugs.

When children are harmed instead of helped with psychiatric drugs it is always tragic. When the child lives with his or her parents, the parents can’t understand why the help—the medication—is not helping, but hurting.

My son was diagnosed with temporal lobe epilepsy the month he turned seven years old. It is a neurological condition known to be caused by a brain injury, and can cause the same symptoms as schizophrenia.  When he was diagnosed with temporal lobe epilepsy, he also had been getting mental health treatment services for over three years and had a diagnosis of PTSD. He had this diagnosis because he had been the victim of violent assault when he was three years old and in foster care.

My children were in foster care due to my own failure to deal with the effects of my own traumatic childhood.   I placed my sons in foster care, when I became unable to care for them.   My youngest son was placed in a home that had twelve reports filed with Child Protective Services.  After he was victimized, I believe that the State of Washington attempted to cover it up, with little regard for how this would cause my son further harm. I was not informed of the trauma my son had experienced.

I brought my son home with a recommendation that intensive in-home services were needed.  For years this recommendation was never followed, and my son continued to struggle without the help he needed.   He got med management from the public mental health system.   

The drugs prescribed included neuroleptics that have been prescribed to children off-label for decades. My son was first given Risperdal when he was seven years old in 1995 to “treat” his aggression.  The betrayal of trust I felt when I learned about what this class of drug does to the human body is overwhelming.  I am outraged to know that none of the things that I should have been told before giving consent were told to me by the psychiatrist who prescribed them.

The claim that my son’s condition psychiatric diagnosis was caused by a genetic or an inherited biological defect is not supported by any available scientific evidence. Psychiatrists have been claiming that they are “medically treating” unidentified diseases without ever discovering a biological dysfunction or disease process that causes a single one of the psychiatric diagnoses.

My youngest son is one of the many children who have been seriously harmed by the bio-medical paradigm of psychiatric care that permeates the public mental health system.  I am his mother and I am painfully aware that I was misled by professionals about my son from the beginning.  The services were never based on my son’s actual needs; and they were never “family directed/child centered” as Medicaid Guidelines required.  We were given ‘help” which hurt, and were always based on the system’s needs, never on my son’s needs.  The fact that the services were not therapeutic and were in fact detrimental was never a concern.  The only concerns were the fact that the services were expensive and that my son did not improve.  The lack of improvement was his and my fault.

After five years of such treatment, which involved repeated hospitalizations and discharges recommending the same intensive services which were then never provided, the state Division of Children and Family Services claimed that my son must become a ward of the State in order to have his mental health services covered.  He, in fact, was already on Medicaid and he did not need to become a ward of the state in order to continue to be eligible. I believe the reason for this action on the State’s part was motivated by the fact that a larger percentage of my son’s care would be paid by the federal government once he was a ward of the state.

It was during this period of time that my son sustained serious injuries from the massive amounts of drugs prescribed to him, over my vehement protests. He has suffered from akathesia and tardive dyskinesia since he was 13 years old.

I have learned much about “the system,” “the drugs” and “psychiatry” from our experiences.  I have learned, much to my horror, that the same drugs that disabled my son are now being given to countless thousands of children.  I have learned that parents are still not being given accurate, unbiased information to make an informed decision and so in reality, cannot provide informed consent for treatment using psychiatric drugs.

As such, parents are being deprived their Constitutional Rights, which is their right to perform a basic moral duty for their own children.   It is a parental right to protect one’s children from grievous harm due to any cause.  Not informing parents of the well-known risks of taking neuroleptics and other psychiatric drugs prevents them from even knowing that the drugs can cause serious iatrogenic, or “physician caused,” injuries that can be disabling and even fatal.  This deprivation of their parental rights is occurring as a matter of course.

Significantly, these parents and their children are being deprived of their Human Rights to Informed Consent in compliance with the Nuremberg Code, which according to U.S. law and international Law, is the minimum standard to be met when human subjects are involved in medical research.   I state this because off-label prescribing of psychiatric drugs to children is experimental, as it is done in the absence of valid scientific supporting evidence.

I have yet to meet a parent of a child prescribed a neuroleptic or other psychiatric drugs who was given accurate information about the risks. I have met many parents who voiced concerns about their child’s deteriorating healthy once they were put on neuroleptics, but who were totally unaware that the drugs could be causing these problems. In one case, the child became obese, diabetic, had high cholesterol, suffered heart damage and became aggressive. All are well-known adverse effects of neuroleptics. But neither the 14-year-old nor his mother was told that these problems might be caused by the drug.

My research over the last dozen years has been driven by my desperate desire to find out how to effectively help my traumatized son, and my advocacy is driven by an overwhelming sense of duty to share what I have learned, and hopefully prevent another child and family from similar experiences.  No parent should be lied to or misled by mental health professionals.

A psychiatrist told me last year that any parent who objects to giving psychiatric drugs to their child would, at best, be perceived as ill-informed, and at worst, as being impaired themselves.  Implicit in this statement is a belief that no one has a right to NOT consent to psychiatric drugs being given to their children.

It is heartbreaking as a mother to know that the treatment my son received caused further trauma and disability.  It was traumatizing for his older brother and myself as well.  I know my eldest son has a burden that is not his, and so do I.  The fact that Isaac was so harmed and so traumatized—he is now disabled—leaves us feeling guilty for not being able to stop it.

I have no small amount of sorrow that the reason my son experienced what he did was the result of my own problems, which caused me to place my children in foster care in the first place.  Not a day has gone by that I don’t remember that it was my own failure as a mother that led to my son being placed in the care of someone who victimized him. It is more than a little unfortunate that my deficits which caused me to place him in foster care were the lens through which his ongoing need for treatment were viewed.   

There are times I am haunted by memories. I can remember when my eight-year-old child suddenly claimed that his eyes didn’t work, and that I was the only one who believed him. Imagine finding out a decade later that one of the known effects of neuroleptics is on eye function, and how even adults complain that the drugs make it difficult to read. My son was in third grade and could read only with extreme difficulty, and no one but his mother believed him that there was a problem with his eyes. My son was then given another diagnostic label, as his psychiatrist determined that his refusal to read and do schoolwork was because he had Oppositional Defiant Disorder.  His behaviors were then seen as further evidence of his having a genetic or biological defect in need of a psychiatric label and a psychiatric drug.  This is only one of many painful experiences that I cannot remember without crying.

 

I cannot change the past, and the only way I think that I will have any peace is if I share what happened, and share what I’ve learned.  My hope is someone else will be helped instead of hurt.

 

Some of what I have learned in my research:  

 

Schizophrenia is a diagnosis of exclusion; which means conditions that are known to cause the very same symptoms, must not be present, or else they cannot be excluded. Temporal lobe epilepsy is thought to be caused by brain trauma.  My son was brutally assaulted in foster care.  This is acknowledged in my son’s medical record in his first hospitalization, and it was at that time that Temporal Lobe Epilepsy was diagnosed by EEG. His medical record notes that Child Protective Services were notified.     

 

When a doctor diagnosed my son with schizophrenia, I asked him whether it was necessary to rule out the neurological condition he was diagnosed with, perhaps by performing another EEG. The psychiatrist said that it was not necessary.  I later discovered that temporal lobe epilepsy was apparently ruled out by removing the diagnosis from my son’s medical record.  

 

My son was prescribed Ativan/lorazepam to “control impulses,” which is not an approved use of this drug to this day.  Lorazepam is a benzodiazepine that is highly addictive, and according to the manufacturer, is meant for short-term use only. After a decade on the drug, my son was finally slowly weaned off it. The withdrawal was horrible. My son was then put back on the drug at twice the dose, and this by a doctor who did not know my son and did not speak to anyone who did, including his primary care doctor and the mental health provider who had tapered him off the drugs in the first place. The reason that he was tapered from the drug in the first place was that my son had cardiac damage from the drug, and this was an attempt to minimize further damage.

 

My son was prescribed Divalproex ER, known as Depakote, “for aggression.” This was another drug prescribed “off-label” and one that is contraindicated for concomitant use with the neuroleptic drug, clozapine, which was also prescribed off-label to my son. Clozapine is still not approved for pediatric use, more than a decade after it was first given to my son.  Both clozapine and Divalproex ER are also not recommended for people with a diagnosis of epilepsy, and/or a history of brain trauma.

 

My memories of this time in our lives are still a wound that has yet to heal.  I thought my son was going to die.  I used to dream of hiring mercenary Marines to rescue him.   

 

America’s children need us to stop investigating how bad the over-drugging of children is.  Each new investigation is a little more horrifying than the one before. Instead, we need to act. The lives of America’s children depend on us doing something about what we have found, and acting on the information we have.

 

We Americans pay the doctors who prescribe these dangerous drugs to children.  We have an ethical and moral duty to ensure that we are not paying for children on Medicaid to be mistreated and harmed by programs we pay for.  When one is aware of this sort of injustice and of harm being done, failure to act and to protect children makes one complicit.  We, as a society, must act without delay to help children in need of our care, compassion, and protection.

 

I need to know that what was done to my son isn’t going to keep being done to other children.  The children whose lives have been lost altogether—like Rebecca Riley and Gabriel Meyers–deserve to have their memories honored.   

 

My son needs a fair amount of assistance and he needs protection to this day, even though he is now grown.  I protect him out of necessity because of the serious damage the drugs have done to his brain and his central nervous system.  My son is terrified of clinics, doctors’ offices and hospitals. But I have hope, and believe recovery is possible. I have to work hard not to dwell on all that my son has lost, and know it serves no useful purpose to think of what could have been.  I love who he is, and what matters most is being present and aware of what is.

 

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5 COMMENTS

  1. Becky, I am so sorry to hear about your struggles to protect and find healing for your family and your youngest son. Unfortunately, as you know, your family’s story is not uncommon.

    There are so many places to fall through the cracks in our traditional biologically based model of mental health care, a model which itself is in need of much more scientific rigor.

    You note the lack of data to support the use of many psychoactive medications and medication protocols with children. Which points to more general deficit of information about the potential risks and benefits of various pharmaceutical treatments and a compounding lack of general information about effective alternative approaches that promote healing resiliency in our children.

    Perhaps the greatest lack of support families face is a lack of support, period. A community where families can learn about emotional distress, the real possibility of recovery, and the many options for achieving mental wellness. No family should have to face mental health challenges alone (like it sounds like you did). If there is any guilt to be had, we all share it as a society, for not supporting our families better.

    Thank you for speaking out and reaching out to other families.

    If you haven’t already, please visit our blog on this Mad in America website. Bringing Hope Home, by Lisbeth Riis Cooper, is one way our newly formed Mother Bear Community Action Network is reaching out to support families in finding real and lasting recovery for themselves and their family members. You can also visit us on Facebook at https://www.facebook.com/MotherBearCAN. We hope you will join us and that you find hope and healing for your family and your son.

  2. If there is anyone I know who lives up to the statement, “It’s better to light a candle than curse the darkness”, it is you.

    I have a tremendous amount of admiration for the dedication and commitment you have as an advocate, a parent, and as a Christian.

    I recognize the great efforts you have made to educate yourself and empower others.

    Your contributions to the International Society for Ethical Psychology and Psychiatry (ISEPP) blog continue to attract readers each week.

    I love your writing style and the way that you are able to craft such a strong and valid position.

    I was amazed at how quickly and effectively you took action in a situation that was obviously promoting the stigma of “mental illness” and false information among nursing students in your state.

    If I had a “Better to Light a Candle Award” to give, I would give it to you.

    You are incredible!

    God Bless you and your family,
    Maria