Has your child ever had a change in personality or behavior overnight, and you can’t pinpoint the cause? This happened to one of my kids when his asthma inhaler was changed. It took years, multiple specialists, and lots of research by us to finally figure out the cause. 

singulair (montelukast)

Our oldest has suffered from eczema, asthma, and various other allergy symptoms since he was a baby. When he was around 18 months old, he was put on his first corticosteroid inhaler. A few months later, he was also put on Singulair (generic: Montelukast). At the time, we were told by the doctor that Singulair was one of the safest drugs on the market to treat asthma. We were even told that this would be the last medicine that they would try to wean him off of. 

His behavior immediately began to change. He couldn’t sleep through the night and would have some of the worst night terrors I have ever seen. We started talking to friends about the symptoms that he was having and that’s when someone mentioned they had seen reports of this medicine causing mental disorders in adults. Since our child was under three at the time, it was difficult to determine his mental state, but we knew something wasn’t right. We brought our concerns to the doctor and decided to stop the medicine. Within a month the night terrors stopped and his behavior went back to normal. 

We later found out that Singulair (generic: Montelukast) has a black box warning by the FDA. The black box warning pictured below is taken from a New York Times article about other children that were prescribed singulair. You can view the full article here.

inhaled corticosteroids

Everything was great for several years until his inhaled corticosteroid was changed. The design of the inhaler he had been on since he was 18 months old was changed, and he wasn’t able to continue using it. It took a couple of different inhalers before we found one that seemed to be the best fit to control his asthma. It took years for us to realize the toll it was taking on his personality and behavior. 

Our sweet child who was never physical and wouldn’t hurt a soul suddenly started having very violent outbursts towards his siblings. The strangest thing is immediately after one of his outbursts he would pass out and his body would shake violently like he was seizing. We rushed him to the Children’s ER where they ran a variety of tests and everything came back normal. He would go months where his behavior was completely normal and then out of nowhere it would change.

a march of specialists

After the second time that he passed out, the pediatrician began sending us to multiple specialists trying to find answers. We saw neurologists, neurosurgeons, endocrinologists, and cardiologists. He had multiple MRIs, EKGs, EEGs, echocardiograms, and bloodwork. Everything was coming back normal. We were sent to specialists at two hospitals in Tennessee and a Children’s Hospital out of state. No one could give us any answers. 

One of the pediatricians that had been trying to help us find answers from the beginning suggested that I start a folder with a copy of all his medical records. She was hoping that I would find something that everyone was missing. I gathered all of his records and got started. After countless hours of combing through his medical record I was able to put together that the only change had been to his inhaler just a few months before this started.

I spoke to the nurse practitioner at the allergist about it, and she thought that it could be a possibility that it was his inhaler due to his history with other medicines. She was hesitant to change his inhaler because his asthma was controlled better than it had been in years. The insurance wouldn’t approve any of the other inhalers that she wanted to try. While she was battling the insurance, she asked me to keep him on the inhaler for a while longer. 

the worst was yet to come

A few weeks later, he had his worst outburst and syncope episode of all. This was our breaking point. My husband and I talked and decided to try stopping his inhaler to see what would happen. We talked it over with our son and explained to him what we wanted to try. He was eager to stop and hopeful that our theory was right. Since the insurance still wasn’t approving any of the other medicines, we stopped the inhaler cold turkey.

This isn’t recommended and can cause asthma symptoms to return. We explained to him that he needed to let us know every step of the way how he was feeling so we could make sure and keep his asthma under control. Luckily, he only had a few minor asthma flare-ups that we were able to control with albuterol. You could immediately see his personality begin to change as the medicine wore off. It’s been two years since he came off his inhaler. He hasn’t had any other violent outbursts or syncope episodes since he stopped the inhaler.

I learned not to blindly trust the medications that doctors prescribe. I think that doctors mean well but not all medications are right for everyone. We found a pediatrician that is ok with me questioning everything and doing my own research. I read all the pamphlets that come with the medicine so that I know what side effects to watch for. I have found that if one medication affects someone in our family it will most likely affect siblings in a similar manner. 

If you think your child may have food allergies, you can read more about our food allergy journey here.

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