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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask you about my son's montelukast medication?

69 replies

Witsendmummy · 03/08/2018 13:37

DS is 24 months and has been on montelukast to help with reoccurring bronchiolitis since he was around 13 months.
His behaviour is awful, he hurts everyone and other children and gets angry very easily. He's very intelligent and can be very loving and loves to be around other children but lashes out. We've got a new born now and he can't be let near her.
Is anyone's child on or been on montelukast and has it affected behaviour?
His behaviour is really making me feel so down and embarrassed now.
DS was admitted to hospital multiple times before he was on montelukast and last winter was alot better possibly due to him been older and stronger or due to the montelukast.

OP posts:
Fang2468 · 03/08/2018 14:45

My DS (14) takes it for asthma which was becoming worse, he hasn’t had any of the mood side effects or sleep side effects, and it has reduced the amount of times he needs his blue inhaler.

MiniMaxi · 03/08/2018 14:48

DS (nearly 2) takes this sporadically as needed for bronchial hyperreactivity (probably asthma).

I was concerned about side effects but consultant advised it’s well tolerated by most (though not all).

He suggested giving it to DS as needed (starting as soon as he gets a cold and stopping when the cold has gone). Apparently GPs are keen to prescribe it as a daily medication but consultant was of the opinion there isn’t evidence to suggest this is more effective.

So far we have not noticed any negative side effects however he only takes it for 1-2 weeks at a time.

Hard to say if it’s helping as DS also has inhalers and we have Dexamethosone too which he uses more often than I’d like for croup attacks. The Dex makes him wild for about 3 days!

Witsendmummy · 03/08/2018 14:58

Is there an alternative? I can't choose between this anger and behaviour and having him be I'll.

OP posts:
SoyDora · 03/08/2018 15:00

Best to ask your GP re alternatives.

OyWithThePoodles · 03/08/2018 15:04

DD was on it for years. I didn't see any effect on her mood or behaviour at all.

MiniMaxi · 03/08/2018 15:05

Definitely ask GP. Can you also ask for referral to a specialist? They will know best re how to manage the recurrence.

nocoolnamesleft · 03/08/2018 15:41

Is he already on inhaled steroids? If not, that's the main alternative. And as he's older now have more chance of working than they did...

Witsendmummy · 03/08/2018 15:51

No he's just on montelukast everyday and salbutamol inhaler as needed. In going to doctors on Monday. Thankyou all.

OP posts:
IFartGlitter · 03/08/2018 17:42

@Witsendmummy our GP changed his preventer from Becotide to Flixotide and he has been well controlled ever since. Last winter we didn’t need any Prednisolone at all, which was a first for us.

Thebig3 · 03/08/2018 18:23

@witsendmummy he needs to be on a preventer inhaler as well. I would also ask to be referred to discuss with a consultant all the options. Unfortunately we found that GPs aren't always clued up on asthma . It really surprises me that they would give montelukast before trying an preventer inhaler. Good luck, hope you get sorted

Isleepinahedgefund · 03/08/2018 18:45

I had a terrible experience with Montelukast, it caused bad psychiatric side effects and behavioural, sleep disturbances, it was awful. Side effects wore off pretty quickly after I’d stopped (a couple of days)

However, the therapeutic effect is good and if it’s helping where nothing is then I certainly wouldn’t stop it without advice. They are likely to brush off the possibility of these side effects though...... It did really help my asthma. I decided not to take it though because of the other side effects.

nocoolnamesleft · 03/08/2018 18:57

Thebig3

At the age he went on the Montelukast, I would probably try it before inhaled steroids. The problem was that he was so young then that ICS probably wouldn't have worked, and there's a bit more out there (though conflicting) on Montelukast working for recurrent viral induced wheeze at that age.

CantChoose · 03/08/2018 19:00

Aggressive behaviour is a well known side effect I'm afraid.
But as nocoolnamesleft says, now he's a bit older he might have more benefit from an inhaled steroid and he might be able to come off it. Glad you're seeing your GP soon :) they should be able to help.

JoyTheUnicorn · 03/08/2018 19:03

If you google montelukast side effects and look at news articles there are quite a few recent articles there. I would print one or two out to take to the GP, as they can be quite dismissive.

The fight for openness about the effects has been led by parents mainly.

Foodylicious · 03/08/2018 19:09

Can you ask to try Cetirazine instead?

nocoolnamesleft · 03/08/2018 19:26

Cetirizine is an antihistamine, so only works if allergy is the trigger. If he's been diagnosed with recurrent bronchiolitis, then it is most likely that he is reacting to viruses. Unfortunately cetirizine doesn't work for that. (Though it can be a great element of treatment for the slightly older kids who are being triggered by house dust mite allergy, or pollen)

APMom · 03/08/2018 19:41

My son was also severely affected by this drug. The first winter he was fine and his asthma disappeared, took him off it in the April and back on in September. He became totally withdrawn, not even speaking to his sisters, terribly sad and cried asking me why was he sad all the time and became violent. He was only 3 yrs old and depressed from it. I took him off it on December 8th after speaking to our gp and within a few days he was back to being my normal child. His preschool teachers couldn’t get over the difference in him as he had become withdrawn there too. It’s a great drug but if you get dude effects they can be severe.

anyideasonthis · 03/08/2018 19:54

@witsendmummy, same here, GP gave us montelukast before trying brown inhaler. Ds was on it for several months before i thought to read up on side effects. He had terrible behaviour too. Felt like i had gailed him too. Went to gp, asked to come off it. Brown inhaler prescribed instead. Worked much better than montelukast and behaviour back to normal within days.

Meatbadger · 03/08/2018 20:09

Same as a few pps our daughter was prescribed it at 3.5 due to asthma and blue inhaler not helping, recurrent chest infections etc.

Behaviour changes and bed wetting were the first things we noticed and it was only by chance someone else said it had caused similar symptoms in their child.

So we went back to the GP and she was prescribed a brown inhaler which has been brilliant - made me wonder why they hadn’t just done this in the first place.

Obviously this is anecdotal but the behavioural issues and bed wetting stopped when she stopped taking montelukast so I wouldn’t be in a hurry for her to take it in future!

agnurse · 03/08/2018 20:42

Montelukast can affect mood so I'm not surprised it can be causing behavioural problems. Best bet is to talk to your GP.

Thatforagameof · 03/08/2018 20:54

It made my calm, sweet daughter angry and violent and nightmare to be around. She returned to normal once it was stopped. The doctor told us it was a common side effect.

CantChoose · 03/08/2018 21:34

It's listed in the BNF as a side effect so you shouldn't really need to bother printing out articles...

CantChoose · 03/08/2018 21:37

Here, hope it helps...

To ask you about my son's montelukast medication?
10storeylovesong · 03/08/2018 22:08

My DS had it prescribed when he was 10 months for his chronic lung disease. The pharmacist asked me if I’d read up on the side effects before they gave it to me. I went back to his paediatrician and was given Salbutamol instead which seemed to do the trick and he doesn’t use anything now. My friends DS was given it a couple of years later as salbutamol just didn’t cut it and his behaviour changed massively. He can’t seem to come off it without consequences to his physical health, but his mental health is struggling.

anyideasonthis · 04/08/2018 01:10

I also want to say that for us it actually turned out that my son had a hole in the heart and he was misdiagnosed with asthma. It was found at age 6 and although it sounds alarming, it was actually a big relief as the years of breathlessness and recurrent chest infections which caused emergency situations due to struggling to breathe were finally explained. It was easily fixed with an operation and the change in him was immediate. I don't want to alarm anyone but I wish we had known sooner so I am writing this in case it helps anyone. My son's heart murmur was not picked up sooner, despite many hospital stays, as it was very difficult to hear. I always felt it wasn't just asthma ... he would get out of breath quickly, but not wheezing, and even just sitting down he would often breathe quite rapidly and shallowly. A cardiogram revealed the cause of the problem within a minute or two, after 6 years of worry and miltiple ambulance call outs.

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