My husband and I were watching TV one evening in April when I received a phone call from a life-long friend. I could tell by the tone of his voice that something was up, and it was confirmed when he asked me if I had time because he had a story to tell me and that it was going to take a while.
I had time and listened for almost an hour while he shared the story of the struggles he and his wife had been having and were still having concerning their daughter’s health.
It was quite a story and my heart hurt for my friend, his wife, and their 10-year-old daughter. Because this story is personal and involves a child, I’m going to leave out their names and their location. I have permission to write it under these conditions.
It Started with Strep Throat
In the summer of 2017, my friend tells me his daughter became ill with strep throat. She went through three rounds of antibiotics before eventually undergoing a tonsillectomy. During her second doctor visit for strep throat, she was also prescribed montelukast, the generic version of Singulair, as she has seasonal allergies.
The bout with strep, including the surgery and recovery, lasted twelve weeks. She recovered just in time for school to start back up in the Fall.
Except she didn’t fully recover.
She seemed to lack energy. She had no interest in jumping on the trampoline or riding her bike or doing other activities she previously enjoyed. Her sleeping and eating habits changed. She had frequent trips to the school office with headaches and stomach aches.
Their happy, bubbly, energetic daughter was tired, listless, and just not herself. But she was also at the age, 5th grade, where adolescence and the changes it brings can begin, so my friend and his wife weren’t terribly concerned. It’s normal for some kids to be distracted and listless at this stage in life.
In the midst of this, she stopped talking altogether. She did not say a single word for 19 days.
Her grades became inconsistent. Their A student started to struggle at the little Christian school where she used to be so happy.
In February, things grew worse. She came home from school complaining of a sore throat. She felt terrible and started missing school due to the illness. After two weeks, she developed an incessant cough that eventually turned into gasping and troubled breathing.
She had two trips to her primary care doctor, another visit to urgent care at the children’s hospital, multiple trips to the emergency room, and even an ambulance call in the middle of the night. She was eventually admitted to the children’s hospital, where a battery of tests was conducted.
Nothing physically could be found wrong with her. She’s diagnosed with General Anxiety Disorder, is prescribed Zoloft, and referred to a psychologist and a speech therapist to help her with her breathing. She was sent home to recover and get back to normal life. She missed a total of six weeks of school.
In the midst of this, she stopped talking altogether. She did not say a single word for 19 days. When she eventually began to speak again, it was only a whisper, and it was one syllable at a time. Additionally, she began to walk with an awkward, halting gait.
Made Worse with Bullying
My friend’s daughter revealed that she was being bullied at school. When she told the teacher what was happening to her, the teacher told her “not to tattle.”
My friend and his wife thought they finally found the source of their daughter’s extreme anxiety.
After trying to work with the school to resolve the bullying issue, (and this is when he called me, we’ve dealt with bullying issues and he wanted our advice) they decide it’s in their daughter’s best interests to switch schools. There is another little Christian school just 20 minutes away and they have relatives who attend there.
While switching schools would normally be a bad idea for a middle-school child suffering from severe anxiety, in this case, they think it’s the answer because she already has friends and relatives there. Their daughter indicated that she’s fine with trying the switch.
In early April, she visits the school for a day and is welcomed warmly by the teachers and the kids. The visit was a success and the switch was made. Things go well and my friend says his daughter is smiling again, but her speech is still one syllable at a time and whispery.
One night, it just dawned on him that he should look into the possible side effects of Singulair.
Even though my friend’s daughter is still struggling with speech and walking, he and his wife are encouraged. They believe it’s going to take some time for her to recover fully. After all, she didn’t get in this condition overnight. At least she can attend school.
Several weeks later, my friend calls me again and says he had been “racking my brain” to try to think of anything different (other than the bullying) that had been introduced into his daughter’s life in the last year that could be the source of her health problems. And one night, it just dawned on him that he should look into the possible side effects of Singulair.
What He Found Blew Him Away
He found on asthma.net an article by John Bottrell, RRT, “Update: Singulair and that Black Box Warning” which discusses Singulair and it’s black box warning about:
“…behavior and mood-related changes…agitation including aggressive behavior or hostility, bad or vivid dreams, depression, disorientation (confusion), feeling anxious, hallucinations (seeing or hearing things that are not really there), irritability, memory problems, restlessness, sleepwalking, suicidal thoughts and actions, including suicide, tremor, trouble sleeping, uncontrolled muscle movements.”
Bottrell’s article discusses concerns the Pediatric Advisory Committee had on September 23, 2014, with removing the black box warning on Singulair because while many people are helped tremendously by taking it, there are still “many reports of patients or parents reporting psychiatric events, such as the ones listed in the black box warning above. While most psychiatric events reported were ‘not serious’, all were reversed after cessation of the product.”
Bottrell also says in his article that he takes Singulair for his allergies and it helps him tremendously. But he and his wife have decided not to give it to their daughter for her allergies due to their concerns about its potential for psychiatric side-effects.
Then my friend found on askapatient.com, a website where people can rate their satisfaction with the medications they are taking and the side effects they experience, quotes from people like this:
Posted on May 14, 2018, by the parent of a 20-month-old female:
Hallucinations, night terrors, aggression, screaming at night.
Posted on March 26, 2018, by a 51-year-old female:
…stomach pains, mild diarrhea, joint pain, headache, chills, flu-like symptoms…
Posted on January 17, 2018, by a 57-year-old female:
Joint pain, bursitis, racing mind, trouble sleeping, extremely racy-spacey dark thoughts…
Posted on October 19, 2017, by a 26-year-old female:
I was on this drug for 18 years. Never had any side-effects until the last two years. I had tremors for 2-3 years and doctors weren’t sure why. Finally, last year, my doctor and I deduced that it might be from Singulair. I decided to stop taking this medication after being on it for 18 years. Within a few days, my tremors subsided. I have been off Singulair for a year now and I haven’t had any tremors ever since.
Posted June 18, 2017, by the parent of a 16-year-old male:
My son started taking Singulair when he was very young. I took him off of it for a while, but his asthma flared up. He started back on it and he began to get depressed, moody and was waking up hearing screams. He also heard someone calling his name and said he felt something touching him. He had anxiety and didn’t understand what was happening to him. I spoke to his doctor and they said to keep giving it to him. Thank goodness I didn’t listen. He has been off of it about one month and the side effects have decreased but aren’t completely gone. I would never use this med. It needs to be taken off the market.
These posts are just 5 of the first 10 out of 1274 as of the writing of this article (May 24, 2018) and all were written in the last 12 months.
After learning about the severe side effects some people taking Singulair experience, my friends immediately took their daughter off of it.
April 30 I received this text from him:
“[My daughter] took off on a bike ride by herself yesterday. Just said she was going and took off. This morning [my wife] said she was singing along with the radio in the car. She hasn’t done that for as long as I can remember. She lost her voice not too long after Feb. 8. Just whispering. Then no talking from March 1 to March 19. Couldn’t even mouth the words or form the shapes. Since March 19, it’s bee one syllable at a time, pretty quiet and whispery. Over the weekend, we started to hear some louder sounds, like her real voice.
This is the sixth day without Singulair.”
On May 16, he sent me the following update by text:
“As of last night, [my daughter] was walking completely normally. All the time. Also talking normally and fluidly, we went out for a hamburger, and when she ordered, she spoke one syllable at a time. But other than that, her speech was normal from the time she got home until I put her to bed.
A friend of mine called a couple of days ago and I told him [my daughter’s] story. When I said the word Singulair he stopped me and said, “Side effects?” He went on to tell me he was on it for about a month but couldn’t take it. It was making him angry and he couldn’t deal with things that would not normally bother him. He also said it made his vocal chords cause him to cough and he eventually felt like he was choking and couldn’t breathe. Um, does this sound a bit familiar?
I’m pretty sure that in [my daughter] it caused: change in eating habits. Wouldn’t eat at school but ate constantly at home. Weight gain. Anxiety/depression. No longer interested in activities she had once enjoyed: trampoline, bike, gymnastics class. Lack of concentration. Frustration. Inconsistent grades. Aches and pains. Headaches, stomach aches. Couldn’t fall asleep. Nightmares. Eventually…vocal chord dysfunction. Stopped talking for 19 days. Vocal tic. Started walking funny. Increased frustration level. Separation anxiety like a toddler.
It’s been three weeks since we took her off Singulair. Major improvements have occurred.”
My friend and I discussed the bullying and whether or not it played a role in his daughter’s symptoms. He thinks it played a big role in her symptoms. While he believes the source of his daughter’s neuropsychological problems is rooted in Singulair, he thinks the bullying exacerbated the symptoms. She was already emotionally and physically struggling. The bullying just made it all worse and his family is still glad they switched schools.
As of this writing, May 24, it looks like his daughter is recovering and is going to be ok.
The Purpose of This Story
I want to be absolutely clear that this story is not intended as a “hit piece” on Singulair. I have no personal experience with this medication. Many people use it and benefit from it with no problems at all.
All medications have side effects.
My purpose in telling this story is to let you know that there are some instances where people taking Singulair experience severe side effects, like my friend’s daughter.
My friend says he’s talked to three adults in his circle of friends and acquaintances who’ve had bad outcomes while taking Singulair.
Make an Informed Decision About Singulair
If you or a loved one is taking Singulair and experiencing similar symptoms for which there is no other explanation, Singulair could be the source of the problem.
Knowing the potential for severe side-effects while taking Singulair could save you months of illness, stress, trips to the doctor or hospital, or the need for a prescription for an antidepressant or anti-anxiety medication. Parents will want to keep a close eye on their children if they choose to use this medication to alleviate their child’s asthma or allergies.
Do your own research. Talk about it with your doctor or your child’s doctor if you’re a parent considering Singulair for your child. Ask some friends if they have experience with Singulair and how they’re doing on it.
I’m not calling for it to be removed from the market.
I just want you to be aware of the potential for severe side effects so you can make an informed decision for yourself and your family.
All the best,
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