RaisingJordan

Just a Mother Sharing How Autism & Mental Illness has Imapcted our Family

The Medication Conundrum

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“That is where we stand as a nation today. Twenty years ago, our society began regularly prescribing psychiatric drugs to children and adolescents, and now one out of every fifteen Americans enters adulthood with a “serious mental illness.” That is proof of the most tragic sort that our drug-based paradigm of care is doing a great deal more harm than good. The medicating of children and youth became commonplace only a short time ago, and already it has put millions onto a path of lifelong illness. (246)” 
~Robert Whitaker
Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mentalillness in America

drugs

 

Are psychiatric medications doing more harm than good?

When my son was just six years old he began having severe meltdowns which would last over five hours. These meltdowns could be caused by something as simple as not being able to eat a doughnut when he wanted to and no matter how you logically tried to break it down for him, he wasn’t having any of t.

We now know that my son has a severe receptive/expressive language processing disorder that went undiagnosed until just last year. The catalyst for the meltdowns was more than likely his inability to cognitively process what was being communicated to him and his frustrations in regards to that.

I feel it’s why school was and is a source of constant aggravation for him as well, because he’s unable to process the information the way a typical student is. That inability leads to feelings of embarrassment. Feeling as though he’s not as bright as other students, and he adapted by having meltdowns so he would no longer be forced to be in an environment that caused him severe anxiety.

When the meltdowns began we were naive, we looked to professionals for answers, we looked to the school for answers, and we believed and trusted in the advice we were given in regards to treatment.

The first medication my son was prescribed was Concerta. His family physician felt it would help in resolving the severe meltdowns. At first I was hesitant, because I didn’t believe in medicating children. As a young girl I had friends who had been put on medications like Ritalin and I saw how it had changed their personalities, and not for the better. I didn’t want to do that to my own child.

I felt backed into a corner when my child had to be taken to the E.R more than once because we couldn’t manage to help him calm down, so I relented and tried the Concerta. Not thirty minutes after taking the medication, my son became lethargic, vomited, complained of chest pains and nausea. Forty minutes after taking the medication he was being rushed to the E.R and then transferred to The Children’s Hospital where he remained for the next two days.

I was a complete wreck and felt responsible for having given him the medication. I wish I could say that was the end of our bad luck where medications were concerned, but it was just the first in a long line of negative or adverse reactions to medication.

The next medication was Risperdal. This medication seemed like a miracle drug, at first. When my son continued to have the meltdowns at school and at home his doctor prescribed the Risperdal and literally the next day the meltdowns stopped. I was relived but not for long.

Risperdal came with its own negative side effects. First, it made my son eat non-stop and then gain massive weight in his face and waist area. If that wasn’t bad enough, about six months into the medication he began growing breasts.

What the doctors forgot to mention when they prescribed the medication was that Risperdal causes the prolactin levels to increase and can cause lactation and breast growth in boys and men. It was during the Risperdal era that he began to talk about seeing shadows and colors.

Once my son began developing breasts, his psychiatrist switched his medication to Abilify. At first, we didn’t see any significant changes or adverse reactions, but as his doctor slowly raised his dosage to a therapeutic level we started noticing more aggression and then outright violent behavior. The meltdowns were back, albeit not as severe or as lengthy, but still, they had made a comeback.

He stayed on the Abilfy for about a year before his psychiatrist decided to switch him to Seroquel seeing how they couldn’t raise the Abilfy past 5mg without my son becoming overly agitated and violent.

Seoquel turned out to be the second worst medication doctors had ever prescribed for my son. It was an absolute nightmare of epic proportion. Seoquel caused him to perpetuate extreme violent behavior that was so out of control at just eight years old that he began threatening me with knives, punching me, kicking me, and destroying our home. It was non-stop every single day.

I communicated to his psychiatrist at the time that it was the medication that escalated his level of aggression and violence and she kept telling me that “We just needed to increase the dose so that his body would adjust and the behaviors would stop.” What a load of crap that was. The higher the dosage the worse the behavior was until finally, I insisted he be taken off the medication and put back on Abilify, the lesser of the two evils.

It was about this time that my son was diagnosed with schizophrenia and we moved to Colorado. There, his new doctor took him off Abilify and prescribed Prozac and Depakote. She was questioning the diagnosis of schizophrenia and wanted to address the anxiety piece of his diagnosis.

The Prozac seemed to work much as the Risperdal had in the first few months and we saw amazing changes for the better. I felt more hopeful than I had in years. In fact, we saw positive pieces of his personality emerge for the first time in ages. He was such a pleasure to be around and was doing an incredible job at school and seemed to be feeling better about himself. Unfortunately, this honeymoon effect was to be short lived and after a few weeks he became manic and had to be hospitalized.

In the hospital, they weaned him off all medications and took him to baseline. He seemed to do well off medication for some time and I felt that I wanted to leave him off all medications, but my son said he felt angry all the time and was having difficulty functioning. We spoke to his doctor and they put him back on the Depakote as well as Risperdal. His doctor felt that since he was older, the Risperdal may have a different effect and be beneficial in stabilizing his mood.

I agreed to try it because he had been in the hospital three times in three months, the police had been to our home at least five times, and once he tried grabbing the steering wheel while I was driving and tried to maneuver my vehicle into oncoming traffic. I admittedly was beyond desperate and honestly willing to try anything to bring some semblance of peace into our lives, even if it was just for a week or two.

When we arrived at NIMH, my son was on the Risperdal and the Depakote. He was again brought down to baseline and was observed without medication for a few weeks. When we left NIMH they prescribed Prozac, again, even though I had thoroughly explained his last reaction to this medication.

The doctors felt that maybe this time would be different and they felt they needed to address the severe anxiety. They felt that if they could address the anxiety, everything else would fall in place. And it did, for a while, that is until he began suffering from medication induced psychosis.

Since then, doctors have tried Zoloft, Lithium. Larazepam , Depakote & Rispredal, (yes, again), and every medication caused him to become more violent or tempered the violence but caused him to have some form of thought disorder or psychosis.

Currently, my son is on the lithium and tomorrow we meet with doctors to inform him that the medication has caused insomnia and subtle thought disorder. The lithium was the last effort in a long line of ineffective medications that have caused more harm to my son, then in relieving him of the symptoms in which he began medication for in the first place.

Recently I read a book entitled “Anatomy of an Epidemic, Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America.” In the book the author, Robert Whitaker, states, “With psychiatric medications, you solve one problem for a period of time, but the next thing you know you end up with two problems. The treatment turns a period of crisis into a chronic mental illness.”

I now have to question whether or not the medications have been the root cause of the continued mental health crisis my child has been experiencing.  What if I had just waited it out for a bit longer? Would the initial behaviors ceased to exist with extensive therapy and support?

My son has been in extensive therapy since he was six along with the medication, but has the medication prevented the therapies from being effective? Whitaker writes in his book that, “The off-drug patients also suffered less from depression, blunted emotions, and retarded movements. Indeed, they told Carpenter and McGlashan that they had found it “gratifying and informative” to have gone through their psychotic episodes without having their feelings numbed by the drugs. Medicated patients didn’t have that same learning experience, and as a result Carpenter and McGlashan concluded, over the long term they “are less able to cope with subsequent life stresses.”

If we currently lived in a State that allowed us to hospitalize our child during a medication taper, we would have him taken back to baseline and work with therapists to help him adjust and function to everyday life without meds. For at least the next six months, we do not reside in such a State and bringing him to baseline in our home would be just plain hazardous to our safety as well as his.

My son needs to be in a safe environment with trained professionals who can manage the violence and aggression he’s prone to having while tapering off powerful psychiatric medications. We are in no way capable of handling those types of reactions from medication withdraw in our home. Inevitably he would meltdown, have a violent outbursts and we’d have to call 911 for help in transporting him to the E.R. Those are risks I’m just not willing to take right now.

So for now we’re stuck, trapped in a cycle of medicating my child with drugs that seem to be causing significant harm and I don’t know what to do about that.

It was suggested to me today that I have my son genetically tested. Apparently, a test can analyze the genes that may affect a person’s response to anti-psychotics and antidepressants. Insurance companies won’t pay for the testing currently, but it may be worth the out of pocket expense if we can determine an appropriate medication that will help stabilize my son’s mood without harming him in any way. I have a meeting next week to discuss it, so we’ll see.

Until then, we just have to take things one day at a time and hope for the best until we can sort this all out. It’s cliche I know, but for now that cliche is the mantra of our life.

“…and she no longer is having her emotional responses to…stress numbed by medication. “I’ve been off the drugs for two years, and sometimes I find it very, very difficult to deal with my emotions. I tend to have these rages of anger. Did the drugs bring such a cloud over my mind, make me so comatose, that I never gained skills on how to deal with my emotions? Now I’m finding myself getting angrier than ever and getting happier than ever too. The circle with my emotions is getting wider. And yes, it’s easy to deal with when you’re happy, but how do you deal with it when you’re mad? I’m working on not getting overly defensive, and trying to take things in stride.”
Robert Whitaker,

Author: angeliamarie44

This blog was created to share our experiences and the impact of mental illness and Autism. I believe in the importance of erasing the stigma of mental illness and for that to happen, families such as mine need to speak out, advocate, and provide the real story of what we endure daily. That includes, the struggles and the successes of our daily life and interactions with the health care system, schools, police, and society in general. Mental illness, just like cancer, diabetes, or even the flu is a medical illness and it's past time that we treat it as such. I feel our societies failure to provide treatment and support services for mentally ill individuals and denying hospital care to the mentally ill is setting a separate and unequal standard in our country that the mentally ill are somehow less deserving of medical care and being treated with the same dignity and quality care that any other person facing a medical crisis has the right too. They too have a right to a successful life free from pain and without proper care and understanding their illness could have life threatening consequences. As a mother with a child who has struggled for years with mental illness and Autism, I feel it is my path in life to raise awareness so that we might create the much needed change in this country and end the discrimination facing the millions of mentally ill. "Mental illness is an equal-opportunity illness. Every one of us is impacted by mental illness. One in five adults are dealing with this illness, and many are not seeking help because the stigma prevents that." ~Margaret Larson

3 thoughts on “The Medication Conundrum

  1. I am so sorry to hear of your son’s struggles.

    I used to work with three clients who had various behavioral disorders and mild mental retardation. All of these medications are familiar to me for my clients were on most of them at one time or another. Doctors would tweak and adjust largely based on guesswork. The adjustment of one client’s medications increased aggressive behavior and hallucinations.

    Sadly, few admit that psychiatric treatments are still in their infancy and are based on very little hard science. As a result, I’m keenly interested in neuroscience, epigenetics, and other areas of study that will hopefully shed more light in the coming years on how and why people behave as they do.

    • Thank you, and you are absolutely correct. Medication is not an exact science in treating mental illness. Sadly, many patients are treated as guinea pigs and finding an effective medication that does not worsen symptoms can be difficult.

      I’m glad to hear you’re working in a field that may provide solutions and more effective treatments in the future.

  2. Thank you so much for visiting and following my blog. I appreciate it very much. I’m impressed by your strenght as a mother and as a mother myself, I know how horrible it is when your child is feeling bad and you don’t now how to help. Kudos to you and your son and family/Lotta

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