...to tell you this about Montelukast (Singulair)

[Hmmmmminteresting]

I've posted on here before about this drug (used to treat Asthma and allergies predominantly). We have had a very bad experience with it and I wanted to raise awareness of the awful side effects.
I got a lot of the "well I'm alright Jack" type comments. But I also got a lot of "Oh my god. Everything has just suddenly made sense" messages as people were realising that their / their childs mental health, anxiety, depression etc was potentially down to this. That's all I wanted to do.
Well good news, in the USA today the FDA have announced they're going to be putting a black box warning on the outer packet to warn of the side effects, since their studies on rats have realised that this medicine does actually cross into the brain, therefore almost having the ability to 'rewire' certain parts. The damage it does is often irreversible.

Here is hoping the UK follow suit very soon.

www.fda.gov/drugs/drug-safety-and-availability/fda-requires-boxed-warning-about-serious-mental-health-side-effects-asthma-and-allergy-drug?fbclid=IwAR1h6IhdVXz0SffV95dNyms5RE-Az9UIAXk-MuRDEBXN3vLtRRGYnBLAls4

My DS was put on this at 1 as an “atopic child”. I was told at the time that a side effect could be night terrors and to swap his dose to the morning rather than evening if that happened. He seemed fine for a good few months, perhaps six, and it improved his wheeze and his eczema. But then he started getting night terrors - screaming for hours in the night, totally uncontrollably. So we swapped it to the morning, but it made no difference so I just stopped the medication. And within a few nights the screaming stopped, gradually went back to his normal self.

I felt a bit embarrassed at his next consultant apt (only a few weeks later) telling her, but she didn’t reprimand me at all! I think they do know the side effects can be pretty extreme.

That’s fine @OP

That’s not what I’m debating. Clearly, there does need to be more awareness about the extent and number of people experiencing side effects, and the severity.

What I have pointed out, is that the side effects are in the leaflet. And that anyone prescribed a medication should be reading the leaflet before taking it.

Dd developed horrific anxiety on singulair. Once we stopped it, she improved dramatically, but we are still dealing with the aftermath a year later.

We were advised again and again to watch for signs of depression. None of the doctors we took our dd to see for anxiety flagged the singulair as the problem. It was finally caught by an observant pharmacist who put two and two together when her prescription for anxiety medication came to him.

@BalanchineBallet and others who have said it - I wouldn't stop medication without a doctor's advice ever, but in our case we have been given Montelukast to use when we feel our son needs it. We have been discharged from the consultant and GP on the matter. He currently has a cough and we use it for about a week to reduce coughing at night and hopefully dry it up. But the crying out and dreams get worse so we stop as soon as we feel it's made a difference. Fortunately for us / him bad asthma has not been an issue, I have asthma i am aware of the problems! We all have different curcumstances!

Quite a lot of people here saying they will stop giving children their prescribed Montelukast immediately. While I understand concerns please talk to doctors first and remember we are at the start of a pandemic of a severe chest virus and kids with wheeze may not be best served by losing an effective anti wheeze medication right now.

Whilst I am sorry for your experience OP my son had been in this for Scott 6-8 months a year for Scott 7 years and has been absolutely fine. No noticeable mental symptoms at all. Just to show that it doesn't always cause reactions like you are describing.

I've been on it for 18 months or so and haven't noticed any side effects.

Hopefully people will be more aware of possible issues though

Humans aren't rats.

I didn’t read the leaflet as it was prescribed to my child by a consultant paediatrician at a time when my child was struggling with worsening asthma. I had a face to face consultation in which I was not warned about side effects. I would presume that with a medication capable of causing such severe side effects we would have been pre-warned. My son is due for a review shortly and he will be coming off this as he is suffering with some of the side effects. Thank you to the op for sharing. I will not take for granted that severe side effects will be communicated at the time of prescribing in the future

@Vittoriosa

The top of the leaflet, and all other leaflets tells you to read before taking. That’s on you.

My 13 DD has had asthma her whole life and was getting to very dangerous stage, she was prescribed this last year and it has been amazing for her, but not all medicines work for everyone

It’s incredibly irresponsible to stop your child’s medication based on a post on Mumsnet rather than a discussion with your clinician.

You sound lovely

I would plead with any parents whose children are taking Montelukast to speak to your child's specialist before you withdraw your child's medication.
The OP though well meaning is not a medical professional and is not qualified in anyway to suggest a change to your child's drug regime.
Doing research on the internet is not in anyway at all the same as being a qualified specialist for respiratory disease.

My 3 year old suffers from viral wheeze requiring days in hospital, after 2 attacks close together last year the paediatrician mentioned starting him on a preventer either montelukast or a steroid inhaler, I pushed for the inhaler as I’d read so much bad stuff about montelukast and thankfully since he’s been on the brown inhaler (4 months) he’s not had a single episode of the wheezing.
So many people/children seem to have suffered on this medication

That's great for you howodd21 however when my ds was small he was so ill with asthma constantly that his consultant put him on Steroid preventer inhalers and Montelukast.

Now at 13 he's really well (still takes both and his strength of Montelukast as been increased as he's got bigger).

I realise fir some people this has had awful side effects but as I said earlier, this drug has been a life saver for us. Let's not do a blanket - "This drug should never even be considered by anyone" way of thinking.

We just wanted to reiterate the advice given by many MNers on this thread and add our standard notice here, which is to urge people to please seek professional medical advice if you have concerns about any medication your child is taking.

Please don't withdraw your child's medication unless advised to do so by a HCP.

I have been on Montelukast for almost two years. Diagnosed with asthma two years ago, although my asthma nurse suspects it started in childhood - as a child I had issues with shortness of breath and recurrent chest infections and coughs. In 1999 my then GP said I was borderline asthmatic but didn't need meds as I don't wheeze. Almost had an asthma attack in 2018 and finally got a diagnosis after more GPs saying you can't have asthma without a wheeze

It's made a huge difference to my asthma. It means I've been able to stay on my Fostair preventer inhaler, rather than moving up to stage 3 of 4 asthma management plans.

Not had any side effects fortunately.

My 6yo gets nightmares on it but that is outweighed by his numerous hospital stays via 999. For him it's worth taking.

Thank you for this. My DD (15) was prescribed this about a year ago. Thankfully it didn’t suit her as it gave her stomach pains so she stopped taking it after only a few weeks.

Please don't withdraw your child's medication unless advised to do so by a HCP

I'm still waiting for a call back from DC asthma nurse, I only called in October!

I have just recently started this. And am so relieved to read this as I thought I was going crazy. I have been so low and tearful.

Despite the very severe problems it was causing, We stopped giving our dd montelukast only after consulting with her asthma specialist. Please, please don’t mess around with this. My dd absolutely had to stop this med, but we did it with careful medical supervision.

I can’t even say I regret her taking it. We were struggling to find a way to keep her breathing. We tried lots of meds with various degrees of success. I can’t really say I would go back and change anything I did because without that awful med, maybe one of the asthma attacks she had while on it would have had a much worse outcome.

@SquashedFlyBiscuit - my son was prescribed montelukast after having horrendous anxiety and depression caused by a beclometasone inhaler. Problems going to sleep, sadness, anxiety about death, uncontrollable at school. ...
Funnily enough, we stopped his montelukast recently as he's not been coughing as much and he does seem happier....