When my husband and I brought our Darius into this world, we had the same hopes and dreams that all new parents do. We wanted him to be healthy and happy. We wanted him to achieve his dreams and contribute to society.
Unfortunately, at the age of 17, our son’s physical and mental health were ravaged by taking the prescribed drug Abilify (aripiprazole) for his Tourette syndrome tics. His chance for happiness has been destroyed. Darius lives in our home in tremendous physical and emotional pain. Any dreams he had as a teenager have been dashed. But I do know he will contribute to society. He cares deeply about others. My husband and I have joined his advocacy efforts against the use of Abilify and all other antipsychotics to treat Tourette’s and the symptoms of related disorders.
The early years
At an early age it was clear that Darius was curious, bright and loving. He loved books and showed a strong affinity for music. He was a delight, and no parent could ask for more.
He was about six when we noticed some repetitive eye-blinking. We took him to a conventional allergist, but no allergies were identified. As with most children with tics, though it was a concern, the blinking didn’t hold him back. This was about 15 years ago, when it was not as easy to find information online as it is today. Then, by age eight, we noticed other tics begin, like shrugging his shoulders, tapping his foot, and turning his head to the side as if looking behind him. Vocalizations began too, with little grunts, throat-clearing, and coughing. The tics waxed and waned. Because Darius was a straight-A student and fit in at school, we adjusted as a family. He persevered in all that he wanted. In fact, most of his friends and teachers weren’t even aware he had Tourette’s.
Throughout elementary and middle school, Darius did well despite his Tourette’s. He continued to be an outstanding student, took karate lessons, played trumpet in the band, and later learned the piano. He wrote music and performed at church and in school. In fact, many times he performed in front of a large audience.
We began to notice how stress—whether from a negative or a positive experience—could aggravate the symptoms. We also saw that eating processed sugar increased tics. Sugary foods could send his tics off the charts for a short while. In fact, we used to say “sleep was his best friend, as the tics stopped then, and sugar was poison.” I should mention that our son had no signs of other conditions that often accompany Tourette syndrome, like ADHD or obsessive compulsive disorder (OCD).
Shortly after Darius turned 17, our lives suddenly changed. He went from having several tics at once, to near a hundred! He had so many different types of movements all at once like eye rolling, coughing, swallowing, stomach thrusting, body shaking, neck jerking, etc. He even had body parts with multiple tics going on at the same time. At one point, it looked as if he was having an epileptic seizure. The tics were so severe that he could not function. Frantically, we started taking him to one specialist after another. No one could explain the cause for the severity of his tics. We contacted the National Tourette Syndrome Association (TSA) and they gave us a list of recommended physicians in our area. The neurologist who evaluated Darius was considered the top in her field, so after months of suffering, we thought our son was finally going to get the help he needed. The neurologist prescribed Abilify to treat the tics.
Given how distraught he was, drug therapy would have seemed reasonable. We were never told there was a chance of irreversible, serious side effects with Abilify, or we would have insisted on trying something less dangerous. Everyone around us convinced us it was the right thing to do. The doctor never made it clear that she was prescribing an antipsychotic. If she had, we would have questioned why a teenager with a neurological tic disorder (and no other problem) would be given a medication off-label that was used to treat psychosis and primarily schizophrenia and bipolar disorder. This was the start of what would evolve into a combination of prescribed drugs that would forever ruin his life.
The consequences of Darius taking Abilify for one year
The outcome of his treatment with Abilify was tragic. In brief, our once stable and productive son, who had no signs of mental or emotional instability prior to administration of Abilify, is disabled and homebound. He now exhibits:
- Severe forms of schizophrenia;
- Bipolar disorder;
- Anxiety/panic disorder;
- Body dysmorphic disorder (irrational belief that one’s body is defective);
- Severe obsessive compulsive disorder;
- Attention deficit disorder
- Akathisia (a need to be in constant motion);
- Tardive dyskinesia (involuntary, repetitive movements, which include Dystonia);
- Abnormal bleeding;
- Breathing problems.
Even our son’s original tics became bizarre and complex. The new mental illnesses caused by Abilify “fused” with, and magnified, his Tourette’s. He was then given additional medications to treat the symptoms created by Abilify.
Looking back, Darius had more comprehensive testing done than many other Tourette families typically do, and all this information was given to the neurologist at the beginning of his treatment. We later discovered that there are actual movement disorder medications available, yet the neurologist still chose to prescribe an antipsychotic. She did not take advantage of the information we had given her, and instead did a “cookie cutter” treatment for Darius. We feel in the end, his treatment was a case of her grasping at straws, since the doctors couldn’t figure out what was wrong, other than they knew he had Tourette’s.
The nightmare Darius faces each day
Even years after stopping all medications, Darius is still severely disabled from countless side effects. Whenever we try to seek new help, doctors throw their hands up and say there is nothing they can do and they refer him on. Tourette’s is already a misunderstood disorder, so can you imagine how difficult it is for doctors to understand and treat his new health problems? All the more reason that education and awareness are key!
Our son’s OCD and anxiety affect everything he does. For example, he can’t leave a room without first performing countless exhausting compulsions. And that is just one tiny example. He hears voices in his head that can bully and undermine him, and they never stop talking to him. He has lost all control of his emotions, which have become such a roller coaster for all of us. He experiences hallucinations, including seeing demons lurking around the house, his face changing to an alien when he looks in the mirror, and hearing wicked laughter. His physical movement is nonstop because of the restlessness, and his days are spent pacing and talking to the voices. He can’t sit, so he stands to eat. He can’t lie down in a bed, so he sleeps on the floor. The symptoms force him to live this way. His OCD is so severe that sleeping in a bed with a blanket and pillow would cause him even more compulsions and distress, and further delay his sleep. His whole day is tormented. All of this was brought on by the medication. And these are actually recognized potential side effects of the drug!
Getting the word out on Abilify and Other Antipsychotics: A family effort
One positive thing is that Darius knows his body and understands Tourette syndrome very well. He is, after all, on the inside looking out. He knows firsthand what Abilify did to him, and he is horrified that this antipsychotic drug is increasingly being prescribed to children. He is determined to help find better answers for Tourette’s. In fact, it was Darius who discovered the Latitudes website and their efforts to raise funds for research into safe and effective treatments for tics through StopTicsToday.
Darius is determined to make a difference, and that is why we have joined his efforts to bring awareness of the dangers of Abilify and other antipsychotics to the public and medical community. We have tried without success to get the National Tourette Syndrome Association to listen. And we have written to the FDA, CDC, and National Alliance on Mental Illness to make them more aware of the dangers of antipsychotics, including Abilify.
We cannot bear the thought of another family experiencing the same horror that we continue to endure on a daily basis. We know that many other families dealing with Tourette syndrome have children who have been hurt by antipsychotics, but unfortunately, they may not be well-informed by their doctors about the medications prescribed. Because of this, they may not even realize that the medication could be to blame for physical, emotional, and behavioral changes observed after the drug was started.
In the words of my son, “Abilify is a total nightmare. It is the worst thing to ever happen to someone with Tourette’s. Every day I have to live with the torment of knowing that all of my suffering is now simply because of the harm done to me by something that was supposed to ‘help.’ I have to carry other people’s mistakes around for the rest of my life through my new illnesses.”
In the last decade, the use of antipsychotics has become more common for Tourette’s, OCD, ADHD, and autism—even without adequate studies. We are completely at a loss to understand how this class of medication was chosen as a potential treatment for Tourette’s considering that there is very little scientific evidence to support the use of antipsychotics to begin with.
We were also shocked to discover from the Prescriber’s Guide that Abilify is a powerful mind-altering drug with effects on the brain comparable to hallucinogenic street drugs. Research for Tourette syndrome continues to focus far too much on incredibly dangerous and unreasonable treatment options like Abilify.
We hope that my son’s story will help bring about the change necessary to prevent these medication tragedies from continuing to happen. We are fighting for better treatments for Tourette’s, and it is our mission to help educate the public and medical community about the dangers of antipsychotics. By doing so, it is our goal that Abilify and all other antipsychotics will stop being prescribed for the treatment of Tourette syndrome and its related conditions.
We hope you will share this article. Please scroll down to write your comments.
Editor’s note: The full family name is not being used to protect Darius’ privacy.
See “Darius and Abilify for Tourette’s: A Follow-up Response from his Mother” to view the follow-up to this article.