Our story is like so many of yours…My son, 7, started Singulair at 2 ½ after a hospital visit and too many rounds of oral steroids. When he started Kindergarten at age 5 his behavior became increasingly problematic. It was hard for him to meet new people - something we had noticed at birthday parties in preschool, where he clung to me the whole time. He became more and more anxious, ran out of the class, didn’t really socialize, chewed his shirt, wouldn’t talk to people he didn’t know (or even look at people). I thought - he’ll adjust, he’ll be ok - he did well in preschool (although looking back, there were some repeated behavior problems there as well). By November the teacher told me she was really starting to worry about him - that he was depressed. I took him to a psychologist and he was diagnosed with anxiety.
In the summer I tried to enroll him in an art camp - but he ran around like a chicken with its head cut off and they kicked him out. In first grade he hid in the back of the room for the first few weeks. More shirt chewing, wouldn’t take off his coat, threw things, hit kids. At home he was capable of acting normal, but then every so often would act - well, psychotic. Mumbling to himself, overreacting to everything, screaming. Meals were hard, bedtimes were hard, getting dressed was hard. I had him evaluated and he was put on an IEP for behavior/emotional issues. More and more he was talking about death - wanting to die, wishing he was dead, saying that he hated himself.
Throughout all this time, I wondered, could it be the Singulair? I asked the doctor, the allergist, the psychiatrist - have you heard that this medicine could cause this? No, no, no- they all said after looking it up.
Finally, I looked on the web and found this site back in January, 2007. I read enough postings to recognize that other people were having similar issues. I told my doctor I was taking him off. She tried to get me to wait until after winter, but I didn’t. I just stocked up on pulmacort and albuterol and figured I would be ready with the nebulizer.
I watched my son carefully that first week, and it seemed like a cloud had lifted from him. He did not instantly change all of his troubling behavior, but as time passed it became less severe and more manageable. He became capable of things that he couldn’t have handled in the past. Almost immediately he learned to read. He had been almost reading for so long, but was so self-conscious about reading aloud to anyone. He took swimming lessons without a problem - it had been impossible to take him to any new class or camp where he didn’t know anyone before.
During this time, he also got lots of support at school and I enrolled him in group therapy. But I know that he would not have made as much progress as he has if I had kept him on the Singulair. Back at his worst he was like another child - haunted, crippled by intense anxiety and self-hatred. We wondered - what could be the cause - abuse? - but it just didn’t make sense - there were no other signs. I have an older son - who never went on Singulair - who has the sunniest disposition. Yes we have some history of mental illness in our family - but most people start showing signs either from birth or in their teens. My son was a happy baby, a friendly toddler, and all along, was very loving in his good moments to his close family members. Things just weren’t making sense. We were looking all over for an explanation. Now that we have it, even though we feel relief, we also feel tremendously sad.
I wonder - how many kids out there with crazy behavior are getting punished, are falling behind in school, are being institutionalized? I will be writing my senators, congressman, state and federal, as well as notifying the FDA.
This is what bothers me the most - all of us across the country go to our doctors and ask about these side effects. But (except for those who posted here) we don’t report the side effects, because everyone tells us they are not caused by the medicine. So our individual reports were never taken seriously because it never got past the doctor’s office.
I feel bad I didn’t post earlier, but I was intimidated, and almost embarrassed to “blame” my son’s behavior on the medicine, rather than taking responsibility for it as a parent. Thank you to all the parents who had the guts to post, and especially to the parents of Cody Miller who brought this to the public. I am so sorry for your loss - and I am so sorry for all the parents and children and teens and adult Singulair users who have suffered. I feel like we should form support groups because we have all been through a terrible trauma. I live in Massachusetts and would love to hear from those who live near me.