AIBU to think that Montelukast / Singulair is poisen!

[Hmmmmminteresting]

I posted here around a month ago asking how / why my 1 year old had had a personality transplant in the space of 2 months. I was at my wits end. During the thread I mentioned that he was on asthma medication and straight away a few picked up and asked if it was Montelukast.

What followed was hell. He was admitted to hospital on the back of gp concerns due to his very sudden change in behaviour. He would scream day and night, refused to eat, was losing weight, wouldnt sleep, wouldnt interact at nursery anymore etc.

The pediatricians dealing with him knew instantly this was all down to the awful side effects of this drug, something we had not even considered. He was taken off it immediately and one paediatrician said he hopes it will be banned soon.

The long term side effects can be life changing.

There is a Facebook group all about it (link below) which has taught me so much and I wish I had never exposed my son to this drug.

m.facebook.com/groups/40378158644/?ref=group_header&view=group

Gps surgeries have now started sending out letters to those on it warning them of the side effects since the government recently published the below, but in my opinion none of this is happening fast enough and gps are not even obliged to tell!

www.gov.uk/drug-safety-update/montelukast-singulair-reminder-of-the-risk-of-neuropsychiatric-reactions

I cant believe that these pharmaceutical companies can play with ours and our dcs lives. We were never warned of the side effects!

I'm still so cross but thankfully dc is almost totally back to his old self. It could have been a different story if it wasnt for those on Mumsnet who pointed it out.

I'm currently giving this to my DD for her undiagnosed asthma. Its worked amazingly over the summer and is currently keeping a cough at bay. No terrible side effects that I can see. I was also warned about the side effects at the gp.

@sinister there are many drugs that cause me side effects also.
I'm not on about general side effects or other drugs. I'm on about the permanent damage this drug does to people especially children.
I guess what you dont know cant hurt you! Self obsessed really...

Surely the self obsessed is declaring it poison because of your own bad experience.

I react badly to both tetanus and flu jabs. However it would be self obsessed of me to declare them both as poison as a result even if it has landed me in hospital. Instead I am mature enough to accept that all drugs have side effects that effect a small amount of people and to react makes you one of the unlucky minority. Ds will still be having his flu jab next week even if I can’t have it

Asthma can and does kill people. If this drug works wonders for many people it will prevent lives. Even if it has some pretty serious side effects for some people the benefits (ie being alive!) will outweigh those risks for some people. We’re not talking about whether someone opts to take a paracetamol or not. For many people this drug is their last resort in a battle with uncontrollable asthma.

I’m sorry your child had a bad reaction to this or any other drug. It must have been very frightening.

However YABU to start such a thread about a topic you seemingly know such a small amount about.

If anyone who is prescribed this drug or has DC:dependents taking it has any concerns please contact your GP, asthma nurse, chest clinic or appropriate consultant. Do not stop any medication without first discussing this with a medical professional.
Other than that, no one should be giving medical advice of any kind online unless in a telehealth setting.

YABU.

So you would prefer my daughter to be in A&E on a monthly basis and admitted to paeds more often than not? This medication has been a lifeline for her and she’s a happy energetic 2.5 year old instead of a child that would out of breathe and worn out getting out of bed.
I really am sorry that you’ve had a bad experience but maybe do a little more research before trying to scare the crap out of parents and therefore putting children at risk. Suddenly stopping any medication can be dangerous and detrimental

Like I said, even if one person reading this makes the link or gains more knowledge then that's all I care about.
I'm glad it helps your child!
And I'm glad that you were fully aware of the risks and haven't experienced any!
Unfortunately not everyone is so lucky. If you join the fb group you will find many many people who's teens have attempted suicide after their child has been on it for years.
They wish greatly that someone made them aware a decade ago.
Thats all im here for, literally couldn't care less about the insults.
Unless your child is affected I guess your within your rights to not give a shit

I've take it for a very long time as well as my son it works for us

DSD used to bite her arms in her sleep while taking this, and had panic attacks. It is a wonder drug for asthma but the side effects can be rough. The GP claimed she'd never heard of any side effects from it.

I read (and possibly posted on) your previous thread and I’m glad you were able to get to the bottom of your child’s problems in time.

My son started montelukast when he was 5 and we were warned at the time to monitor him for any changes in behaviour. He didn’t have any side effects, luckily for us, and his life threatening asthma is now controlled. It must be fucking awful to experience those side effects, especially when you’ve had no warnings and no idea what’s causing it.

I personally didn’t like it, from day 1 I had Terrible awful stomach pains and had to stop taking it after 2 weeks

OP
YANBU to point out that, for some children this drug has very serious side effects and parents should be told what to look for.

YABU to label the drug poison and suggest it shouldn’t be available when it works well for some people.

"l cant believe that they're not putting explicit warnings out with this medication."

That's because there are explicit warnings in the medication - it's clear and mentioned in threee places in the pack information insert, which also says you need to read it and keep it so you can refer to it later. There is also recently strengthened information on the NHS website.

I think people tend to be a little dismissive of the information given with both prescribed and OTC medicines, and perhaps don't read the information it is supplied with. That's a pity.

Agree that doctors can vary in how clearly they describe side effects, and that any training in patient interaction should make sure it covers the importance of good standards on this. Plus complaints system should catch those who do not explain well, so that improvements can be made.

OP I read your other thread and by pure coincidence my son was given this drug as a treatment option for an allergy 2 weeks later. All the doctor wrote on the info sheet was "Montelukast - may affect behaviour". As soon as I saw it I said absolutely not, and think the doctor should give a clearer idea of the possible side effects.

YANBU to draw attention to it's side effects.

However YABU to say it is poison - for me it is an absolute lifesaver. I know as soon as I have forgotten a dose as my inhaler is out that day and I am coughing and struggling. It turned my asthma around.

We were warned about the side effects and advised to read the leaflet. The sleep problems outweighed any benefits for our DS’s asthma so he stopped taking it.
I agree everyone should be made aware of potential side effects including the more rare and serious ones but it has a positive impact on prevention of acute asthma attacks so I disagree it is ‘poison’ for everyone.

My son was put on this medication. The GP didn't say anything, just wrote the prescription.

I started giving it to him and the side effects were almost instant so I immediately thought it must be the drug, did some research and took him off it about 4 days later!

I went to see a pharmacist who told me that the side effects were very common and then contacted our doctor and recommended that our son be given a preventer inhaler instead