My son was gasping for air and in my attempt to help, I poisoned him. There was no skull and crossbones symbol on the bottle like one would expect for such a potent substance, but rather, the name “Montelukast.” This small, pink, chewable tablet that is deemed a wonder drug by millions suffering from asthma and allergies reduced my full-of life, passionate eleven year old to a crippled, lifeless shell.
I have been clawing my way up a mountain, desperately searching for the reason why my son Nicholas experienced such an extreme adverse reaction to this commonly prescribed medicine Montelukast (a generic for Singulair). Exhausted and bruised, I am now standing at the top screaming our story to make sure no parent ever has to endure the same torturous climb.
After 9 months, we stopped giving Nicholas his asthma medicine, Montelukast, because we discovered that the side effects included neuropsychiatric symptoms. We were hopeful this was the reason Nicholas had been getting bouts of sadness for the past few weeks. Stop the medicine, stop his sadness. Easy enough, right? Little did we know our worlds were about to be turned upside down. Within days, Nicholas became so depressed he was no longer able to function: he could not eat, he could not sleep, he could not go to school, just cried for hours. Then the panic attacks started. For hours, Nicholas would get lost in his own world of screaming and thrashing with the only escape being sheer exhaustion and sleep. But sleep brought horrific nightmares. How such an innocent mind can create such terrifying dreams is beyond my comprehension and his descriptions will haunt me for the rest of my life. Even worse, Nicholas started to have hallucinations: both auditory and visual. We quickly realized that we could not protect him from his own mind. We were powerless and it was suffocating.
We brought him to the emergency room for a psychological evaluation, then to psychiatrist, psychologist, social workers, pediatrician, rheumatologist, immunologist, pulmonologist, chiropractor, and genetic doctor. ALL assured us this was NOT an adverse side effect of Montelukast, since it should only take 5 days to be out of his system. After other possibilities were explored (i.e. infections, trauma, abuse, autoimmune disease, sleep apnea, family history) and no viable answer was uncovered, the solution was to start psychotropic drugs. But we didn’t want to mask the symptoms; we wanted to uncover the root cause and fix it! We realized we were on our own. Scared and desperate, we spent every waking and what-should-have-been sleeping hours trying to figure out what happened to Nicholas.
We found a Facebook support group with nearly 4,500 members describing their adverse side effects of Montelukast. Tears poured from my eyes as I read about nearly identical reactions to Nicholas’ including depression, anxiety, night terrors, aggression, hallucinations, insomnia, paranoia, panic attacks, and sadly, several accounts of suicide. We also discovered that Nicholas has a variation on two genes (CYP2C9 and CYP2C8) that are needed to properly metabolize this medicine. The pharmacogenomic team at Boston Children’s Hospital believes these genetic variations played a part in Nicholas’ adverse reaction to Montelukast.
Sadly, nothing will change until scientific studies are initiated to identify the mechanism for the neuropsychiatric side effects and their long-term implications. This will never happen unless every sufferer files an adverse event report with the FDA.
In the meantime, we continue treatment with a Functional Medicine doctor that used a full-body detox program to remove the toxins from his system and supplements to help restore the neurotransmitters in his brain. We still have a long road ahead but are seeing our son slowly come back to us.
The memory of Nicholas suffering from these debilitating side effects is seared into our minds forever. We cannot go back to change the beginning of our story but we can change the ending. Our hope is to not only spread awareness to Montelukast users but to ignite change to warning labels and to scientific research. Please help us spread awareness by sharing our story.