It seems like it’s all happening in Wales at the moment. Wales Online last week reported on two children who developed suicidal behaviour and change of personalities on montelukast – Singulair.
It was two mother who pieced the story together in the case of their children and confirmed the link to the drug by getting it stopped and seeing the problem clear up. See below and at the attached link for the online complete with video and photographs.
See here Wales Online.
Two Welsh mothers of children with asthma have raised concerns about a drug that is being used to combat the condition. The children had been prescribed a drug called montelukast, but they are worried it has caused their children to have suicidal thoughts and suffer nightmares and hallucinations. The drug can reduce the number and severity of asthma attacks, potentially even saving lives, but some medics have become concerned by its effects on mental health, with parents reporting worrying side effects.
Campaigners across the country are now calling for better warnings of the side effects to be written on the products.
Kayleigh Hodge, from St Julians, Newport, said her eight-year-old daughter Lily tried twice run out into traffic and had extreme nightmares after being given the drug.
“Lily had been in and out of a hospital from an early age because of her asthma,” explained her mum. On an appointment for a review in 2016, the doctor suggested we try this drug. They said that Lily could be a guinea pig. I thought it was great, anything to help my little girl and keep her out of hospital. It was in the form of granules. It was alright to start with and helped with the asthma, but then she started having these terrible nightmares. I thought it might be just a stage she was going through. I brought it up at her next appointment but was told that extreme side effects were very rare.”
But Kayleigh said her daughter started becoming obsessed with death and stopped wanting to go out. Her worried mum said: “She used to love going out every day, but then she started getting really worried about it and one day she had a complete meltdown in the middle of the street. She said she could hear people in her head calling her names and kept saying that her brain felt weird.”
Worried Kayleigh searched online for montelukast side effects and found other parents who had concerns about the drug.
In 2017, the decision was taken to bring Lily off the drug and after an initial ‘flare-up’ when she ran into the road for a second time, her symptoms have since reduced.
Kayleigh said: “I feel really guilty that I allowed her to go on the drug. Every child is different and will have a different reaction, but I just want to warn other parents to be careful.”
Kayleigh’s not the only Welsh mum to raise concerns.
Rachel Masterman, 45, from Caldicot, said her son Robbie began having nightmares after being put on the drug when he was two. She said: “Robbie developed these dreadful night terrors. He would wake up screaming like he was being murdered. He could see things coming out of the walls, spiders, men coming to get him.”
He was also aggressive, but his behaviour improved when he was taken off the drug when he was four. Rachel added: “It took me two years to realise that it could be linked to the prescription. I looked it up on the internet and the side effects he had been suffering were there in black and white. He is still not his normal self. This drug has changed him.”
Official information from the National Institute for Health and Care Excellence describes such side effects as being ‘uncommon’ or ‘rare’.
But a recent study in the European Respiratory Journal found one in eight children developed ‘neuropsychiatric adverse drug reactions’ which were ‘definitely or probably related’ to the drug.
The drug montelukast, sometimes branded as Singulair, is made by pharmaceutical firm MSD. A spokeswoman for the company said: “For the millions of people suffering with asthma or allergic rhinitis, Singulair has been an important treatment option for appropriate patients, including children, for over 20 years. “As with all medications, there can be side effects and these are outlined in the accompanying patient information leaflet. The safety and efficacy of our products is paramount to MSD and we continually collaborate with all relevant authorities on any reviews and promptly implement relevant regulatory recommendations or actions.”
Mothers as Sleuths
The respiratory journal article these mothers found is Here. It’s an extraordinary article. Extraordinary in the sense that this drug has been clearly causing so many problems but yet these reactions are not common knowledge. It has somehow flown beneath the radar.
Extraordinary in the sense that the journal published it. They do provide an editorial aimed at toning down the explosive message – Here. This is standard journal practice but to give them credit the editorial does not say these difficulties are not happening.
A few years before, the team at QuarterWatch had produced a bulletin on the top 10 drugs causing side effects in children in the United States. Montelukast causing suicidal ideation in children featured at number 2 on the list. So the European Respiratory Journal is really just reporting something that we might have expected anyway – which adds to the surprise.
Why is this drug and related drugs like Zafirlukast – Accolate and pranlukast – Onon remained off radar?
Its not because these are wonderful drugs for asthma. They aren’t. Somehow though they seem to be seen as innocuous – like pain-killers or antibiotics.
There have been very few reports of problems on any drugs from this leukotriene antagonist group to RxISK but we have had prior awareness of problems in that hugely convincing cases of gross behavioural change have come our way leading to criminal charges, which RxISK was able to mitigate.
We would like to get far more reports of all kinds of problems from all ages linked to drugs from this group.