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To flag this to parents of kids on montelucast for asthma

33 replies

Colourofspring · 04/05/2024 20:18

My son is under the care of a respiratory consultant for his asthma and the consultant has tried to put him
on montelucast a few months ago- I refused as the consultant informed me that it can cause halluncinations and DS is just about to do his GCSEs.

Now this has come out- one 14 year old boy committed suicide and his parents think this drug is to blame- horrendous for them 😢

Its not the first thing I have read about it either but this article was in the paper today:

https://www.theguardian.com/society/article/2024/may/04/warning-over-asthma-drug-after-500-neuropsychiatric-reactions-reported-in-young-children

Warning over asthma drug after 500 neuropsychiatric reactions reported in young children

UK medicines regulator says information on boxes of montelukast will alert users to risk of mood and behaviour changes

https://www.theguardian.com/society/article/2024/may/04/warning-over-asthma-drug-after-500-neuropsychiatric-reactions-reported-in-young-children

OP posts:
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Needanewjobsoon · 05/05/2024 17:09

We didn't report the night terrors or bed wetting (literally every night). We just stopped as we didn't like the side effdcfsm
I wonder if the side effects are much higher than reported then.

Anyone know about fostair then? I'm on that...

Choconuttolata · 05/05/2024 10:49

My child took it as a toddler and I discontinued it because it impacted her behaviour and sleep, it was noticeable, within days of stopping her behaviour improved and the nightmares/night terrors stopped.

I didn't report it and although it is on her GP notes, I doubt a yellow card was completed. No side effects were mentioned to me by the GP, I read the drug information leaflet that came with it otherwise I wouldn't have known.

BlueMoanday · 05/05/2024 10:40

Montelukast is also known as Singulair in the UK.
It absolutely broke my family when my child took it. We had no warnings and as the effects didn't start immediately we didn't associate it with a drug they had started months before.
My DC became extremely anxious, aggressive, had continuous night terrors and bed wetting, awful reactions to food colourings and was violent at home and school. The doctor didn't link the symptoms, nor did CAHMS. It went on for years. The stress on us all was terrible.
I found the cause by accident and joined the Montelukast side effects group on Facebook and had lots of support there.

BlueMoanday · 05/05/2024 10:32

BonzoGates · 05/05/2024 08:12

I think this is being a bit harsh. Toddlerteaplease was trying to indicate that the reaction to Montelukast is relatively rare.

It's not relatively rare though. Studies have shown that 16% of people discontinued the drug because of side effects. That's more frequently than 1 in 10!
Much worse in children (especially as they cannot tell you how miserable they feel)

MoiraRosesRosesGarden · 05/05/2024 10:30

Look up Montelukast (singulair) side effects support and discussion group on fb.

I recently rejoined. I left about 10 years ago as we were trying to put it all behind us and move on.

Lemon8 · 05/05/2024 10:12

@MoiraRosesRosesGarden I know I probably should. Still dealing with an extremely sick child right now.

I have just read your link, very helpful and thanks for sharing. He did also develop gastric symptoms when taking it which are ongoing and getting worse. I have recently been wondering about mast cell activation syndrome which is also mentioned.

I think I need to join this group, would you be able to point me in the right direction?

MoiraRosesRosesGarden · 05/05/2024 10:03

Lemon8 · 05/05/2024 10:01

My son reacted badly to Montelukast, the year he took it was a year of hell. We were not warned about the potential side effects even when discussing his anxiety with the prescibing clinician. He was only taken off it when I discovered the information online myself and I doubt his case was flagged up at all or is part of the statistics. From what I have read online it seems we are not the only people who have had this experience.

You could still fill in a yellow card report.

Lemon8 · 05/05/2024 10:01

My son reacted badly to Montelukast, the year he took it was a year of hell. We were not warned about the potential side effects even when discussing his anxiety with the prescibing clinician. He was only taken off it when I discovered the information online myself and I doubt his case was flagged up at all or is part of the statistics. From what I have read online it seems we are not the only people who have had this experience.

MoiraRosesRosesGarden · 05/05/2024 09:49

A quick google shows the group is still in action (incredible bunch of hard working people), and I spotted this document about withdrawals after coming off monte, which might be of interest to some.

https://www.fda.gov/media/158486/download

MoiraRosesRosesGarden · 05/05/2024 09:40

Ds was put on this 13 years ago.
At the time there were no psychiatric issues listed as side effects.
Ds went from being a happy, confident little boy to being constantly angry, violent and unable to sleep, and it changed all of our lives. He’s an adult now and is still very angry and needs a lot of input and care.
Our GP was puzzled and blamed parenting (which was fun).

After months of searching I stumbled upon a global parent group who had so much research and had found so much information that eventually forced Merck to add psychiatric issues to the side effects. At the time there was evidence found that has since been removed from the internet. A few journalists were interested as it had the potential to be a big scandal 13 years ago (testing trials were pushed through very quickly as the drug promised to be a big money maker), but dropped away as they were warned off. There was also an employee of the pharmaceutical company who joined the group as an insider advisor whose child was affected, but abruptly left after a few months.

Amongst affected children and adults (a tiny number compared to overall numbers taking it, but still in the thousands) the average time for side effects to show up were 9-12 weeks after starting the drug. Normal paediatric drug testing should have covered this, but Monte was pushed through much faster.

Some had MRI scans and found similar structural issues that could potentially have explained it, and there was a very plausible theory of there being a blood/brain barrier issue, mast cell disorder, mitochondrial disorder and connective tissue disorders(I believe those affected by these conditions are more likely to adversely react to other medications and vaccinations, so it would make sense) but there was so much pharmaceutical push back that no one was able to further research who was at risk or why certain children were so profoundly affected.

It’s entirely possible that the huge change in ds was just a coincidence, but given the timeline and the presentation of the change it fits 100% with the change in thousands of other children.
Some adults had side effects to montelukast as well, but they tended to be less severe and went away quickly once off the drug. The children affected seemed to be more severely affected and many permanently. We were largely ignored though, and many of our children were on monte for several months after displaying symptoms as there was literally no evidence to drs that we should take our children off the drug, and it works so well for asthma that taking them off it felt risky. Hopefully now as it’s listed as a side effect it’ll make a difference.

I do hope that at some point there can be more research into this to identify who shouldn’t be on monte, or at least to help some parents claim some sort of compensation for the damage done to their children and families and how they’ve been thoroughly fobbed off. It may be rare, but it’s still life changing for many.

I’m aware that had I not been a part of the parent group 13 years ago, and seen the whitewashing done of the issue, I would believe this was conspiracy nonsense. I was there though, and sadly it’s all true.

On the whole it’s a drug that helps many children, my post is not meant to scare anyone. Ds was one of the unlucky few. In the majority of children monte does its job effectively and without harm.
Just please be aware of the potential side effects, and if a child shows any sign of increased irritability, anger, nightmares, please take them off it immediately.

CornedBeef451 · 05/05/2024 09:31

Thanks for sharing.

DD (15) has taken it for a few years and recently had the dose doubled because of her age.

She said it gives her very vivid dreams but luckily no other side effects.

ilikecatsandponies · 05/05/2024 08:48

IkaBaar · 05/05/2024 08:20

I’m on it and it helps me a bit. Dd1 is on her second try with Montelukast. The first time it gave her nightmares. This time she is older and has had a few nightmares but we are experimenting with taking it in the morning.

Lots of medications have side effects. Is Montelukast worse than oral steroids or theophylline, I’d say not? Is Montelukast worse than uncontrolled asthma, given how many kids and adults die of asthma in this country.

Same, my daughter and I had multiple hospitalisations with uncontrolled asthma last year so montelukast is good for us.
Informed is best.

VerasChips · 05/05/2024 08:21

My ds had this for a short while- he isn’t actually asthmatic. He developed tics and OCD. Luckily they went away once we took him off it.

The GP didn’t warn us of any side effects at all (obviously we read the packaging which is how we realised the behaviour changes were related to the medication).

IkaBaar · 05/05/2024 08:20

I’m on it and it helps me a bit. Dd1 is on her second try with Montelukast. The first time it gave her nightmares. This time she is older and has had a few nightmares but we are experimenting with taking it in the morning.

Lots of medications have side effects. Is Montelukast worse than oral steroids or theophylline, I’d say not? Is Montelukast worse than uncontrolled asthma, given how many kids and adults die of asthma in this country.

BonzoGates · 05/05/2024 08:14

The psychiatric disturbances are listed as a possibility in the drug instructions in the packet.

BonzoGates · 05/05/2024 08:12

qwertyqwertyqwertyqwerty · 05/05/2024 06:26

Good grief.

If you are a paediatric nurse you would understand that your personal experience is not an accurate measure of side effects of a drug.

Did evidence-based practice not feaure in your training?

I think this is being a bit harsh. Toddlerteaplease was trying to indicate that the reaction to Montelukast is relatively rare.

BonzoGates · 05/05/2024 08:10

My son was on this - it was brilliant for his asthma. Obviously people should be made aware of the possible side effects and it is awful about the death of that young man.

Dearg · 05/05/2024 08:05

I have been on montelukast now , as an adult, for 20 years. When I first took it, I had very disturbed sleep and nightmares; as it was benefitting the asthma, the specialist I was seeing suggested taking it in the morning instead. That has worked for me.
But, she was very clear to me on possible side effects and I could well see that these may be heightened in a child. The side effects have been well known for some time.

Creamandtan · 05/05/2024 08:00

I’m on montelukast and am ok with it, I do know that some medication for asthma effects people negatively though, Fostair sent me doo lally, it turned me psychopathic and took quite a few months for me to release this was the cause, thought I was loosing my mind, in the literal sense!

Needanewjobsoon · 05/05/2024 07:59

Gosh my daughter was on this for a bit and we weren't given these warnings

I came to this thread as I thought you were going to warn about the side effect we had - she started wetting the bed most nights. She was about 4 or 5 so reliably dry and we couldn't work it out. We went back to sticker charts and all sorts.

Until we went away for a week l, forgot the medication and she was fine!

So we came off it. It's bizarre what effect drugs have. But this is far more frightening.

Doodahday88 · 05/05/2024 07:58

Poor kids, that’s awful.

We had were prescribed this for our 3 year old a few years ago. But to be fair we were warned strongly by the consultant to discontinue if it caused any mood disturbances or hallucinations. It did, he had night terrors and we stopped it straight away.

Really glad the consultant was on the ball.

DogElephantTigerShark · 05/05/2024 07:55

I took my then eight year old son off Montelukast as we noticed his personality change and he became quite depressed and started making awful comments about himself. I also saw a letter sent by an MP to a young child’s parents who had killed himself while on this drug. Guidance on side effects was updated but the manufacturers/NICE did not make this clear even to GPs whose patients were regularly taking Montelukast. Incidentally, while not explicitly named in the book or TV series, it seems like this is accepted to be the drug referenced in Nine Perfect Strangers. Gives me chills although I do understand not everyone has the same side effects and there is a risk/benefit trade off. I’m very glad we stopped my son taking this, although his viral wheeze is now harder to control unfortunately.

qwertyqwertyqwertyqwerty · 05/05/2024 06:26

Toddlerteaplease · 04/05/2024 21:45

I've been a paediatric nurse for 20 years and never seen anyone react badly to it.

Good grief.

If you are a paediatric nurse you would understand that your personal experience is not an accurate measure of side effects of a drug.

Did evidence-based practice not feaure in your training?

PhuckyNell · 05/05/2024 06:04

as pp have said all drugs have risks and for most people the side effect risk is worth It.

its always been this way

ThisZingyBlueFish · 05/05/2024 05:59

My younger son took montelukast for less than a fortnight - we stopped because it massively affected his behaviour.

He became so miserable and turned into an absolute nightmare, refusing to cooperate with anything, literally tearing his room apart, having night terrors (not his fault I know!), defying teachers.

The change in him was almost instant both in starting and stopping the medication. So much guilt associated with putting him through that. I can't imagine the guilt if something like this story had happened. Poor boy and his family 😒

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