Please help! I'm at my wits end!

HELP! My 2year old daughter has recently been diagnosed with asthma and been prescribed sulbatomol inhaler and Montelukast Singulair 4mg granules. The Granules have greatly improved her asthma but I becoming increasingly concerned about her behaviour and mood. She is normally a loving but typical 2year old who has normal temper tantrums that I can control! In the last week she has become increasingly clingy, very tired but is frightened of her bedroom, she has tantrums over really small things but once in the tantrum we cannot get her out of it; she gets angry, violent, destructive, frightened, wants us near her but not touched or talked too. Weve tried ignoring her incase it is terrible twos but I really don't think it is. I have researched other forums and a lot of them are American and children experience similar problems. Unfortunately a lot of the children are older than mine so their symptoms seem slightly different like depression and sad thoughts. Can anyone help who has got a similar age child to mine? I'm speaking to my gp later but worried he will say she is just naughty! I know my daughter and this isn't normal naughty behaviour! We have stopped her taking the granules to see if it improves her behaviour. It has helped the asthma but the side effects outweigh the benefits! Please please help from a desperate mummy!

36 Replies

  • Im not a parent, but i'm an aunt to a four and two year old. I guess that if its only lasted a week or so the GP may suggest its just a phase, however the ""fear of her bedroom"" suggests she's possibly experiencing nightmares (as i know a few on here find with montelukast) and if thats disrupting her sleep badly it couldmake her temper pretty awful. one possible solution to this is to discuss taking the montelukast in the this can reduce nighttime side effects and so may improve her quality of sleep and therefore behaviour.

    Its possible that the GP will suggest stopping the montelukast and moving her over onto an inhaled corticosteroid (ICS) instead. I suspect he put her on montelukast first as generally the side effects are pretty mild and some people are reluctant when they hear the word steroid. ICSs are pretty good in that they directly treat the underlying infection and as delivery is direct to the lungs it imits systemic side effects (altough as with any medication there are side effects).

    If you are going to the GP today then i guess its less of a concern, however i would really advice against stopping meds without discussing it. It may give your GP a wrong impression of what does or doesnt work for your daughter (if he think shes on meds which she isnt). It also means that there is nothing to treat the underlying causes of inflammation in the lungs making her more vulnerable to a severe attack. I assume that you would choose breathing over good behaviour!!

    I wouldn't expect the doctor to be dissmissive of your concerns. Behavioural changes in children are a known side effect of singulair and the timing suggests this is a cause and so i'm sure he will take it seriously.

    Hope it goes well, and that aome of this advice is helpful (its always hardover the internet as obvs i dont know what you know and what you have already tried!!)

    soph :-)

  • Hi Evie's mum - I replied on Mat's thread, but just thought of something else.

    Soph has it pretty much covered, but I just wanted to add that when I started montelukast, and when I doubled the dose a few months later, I had pretty bad headaches for a few weeks, and some sleep disturbance. Both of these have now worn off fortunately.

    Your GP might want you to persist for another week or two to see if it settles, but I wondered whether you need to explore whether she's getting headaches - which might not be something she's able to articulate or identify easily? I know they make me pretty grumpy! It might be that some regular calpol is needed until you're through the adjustment phase.

    As Soph says, I'd be shocked if your GP didn't take you seriously. He might also be better equipped to find out whether she's getting physical symptoms too.

    Good luck!


  • Hi

    I stopped my 3 year old sons montelukast because of his behaviour. While he was on it he was violent, bad tempered and like a mini Jekyll and Hyde you never knew quite what was coming next. Since stopping the montelukast he has gone back to how he was before, he is no angel but a million times better than he was on that stuff. I am seeing his consultant tomorrow so will tell him I've stopped it (he said I could if his behaviour continued), he still takes all his other meds and to be honest stopping the montelukast hasn't made any obvious difference. But he is on quite a few other medications.

    What did your doctor say?

    Jenny x

  • Hi everyone! Thank-you for all of your replies and apologies for the delayed response in replying!

    We visited the dr after taking Evie off the Montelukast and her dr had done some research into the ""devil medicine"" and was very pleased that we had stopped her taking it! Even though her asthma returned as soon as she came off it! Once I had described all the awful things she had been doing such as being violent, temper tantrums, nightmares he agreed that she had an adverse reaction to the medication and if we hadn't of stopped it then her problems would have persisted and could have caused ADHD, Depression and all other sorts of horrible behavioural issues. I am soooooo glad I took her off of it when I did.

    He has now prescribed the brown inhaler and while it took a little longer to get into her system and get the asthma back under control I am pleased to say she is a lot better, hardly coughs, don't use blue inhaler and behaviour all normal!

    She now sleeps in her own room during the day and night and we have our happy gorgeous girl back (of course she is occasionally naughty but what 2 year old isn't?!)

    She has been using brown inhaler for a month now so had a check up with GP today; all her wheezes have gone so inhaler is doing its job; yay!

    Since I last saw the GP though he has been on an asthma course and asked a top dr about Montelukast and children. He was told that he hears these awful stories about children all the time; and if she hadn't stopped taking it then her behavioural problems would have been lifelong and she must never take it again as it will always cause this reaction in her. It even makes children suicidal!

    So my advice to all parents; get your kids off this medication! There has to be alternative to help asthma rather than this awful medicine! Don't get me wrong I can handle naughty behaviour and of course would rather she was breathing and being naughty but she was out of control. It scares and upsets me too imagine what was going on in her head!

    We have an appt with her consultant soon so I will be telling her all this! I firmly believe this medicine needs to be banned!

    I am so pleased to have had replies and support; I find it asthma and treatments a bit overwhelming and just want the best for my daughter. So thank-you everyone xx

  • I am glad things are getting more sorted with your little girl and sorry that she didn't get on with montelukast.

    As with all medication, montelukast can effect everyone differently. I personally benefit from it and while I have no control over my asthma I feel the difference when I haven't taken it. I'm just saying don't let a personal bad experience take away from the positive experiences both children and adults who the benefits far outweigh the side effects with this drug.

    Hope the consultant is good :-) x

  • I am pleased it has no bad side effects for you and I agree that yes it probably does work for some people. It just seems that the drs I have spoken too or have been consulted for me have only heard bad things too. So I know it's not just my daughter who is affected in this way. This was an awful experience for my family and daughter and I needed to speak to some people who had experience it with their children and help me find some alternatives.

    At least she has no long term effects and we finally have some meds to help her asthma too :-) .

    Now I just have to hope she grows out of the asthma too. Xx

  • I am an adult who has been taking Montelukast for several years' and have found it to be very helpful as part of my asthma treatment.

    I am sorry that you and your little girl had so many problems whilst taking that medication, it is strange how some medications work fine for some people and not for others isn't it. I am allergic to Salbutamol therefore I have to use Bricanyl as my reliever medication.

  • My daughter was on montelukast for a short while, it sorted her nighttime cough and had no obvious side effects. She is 6 so could have easily articulated to me if she'd have felt odd/had bad dreams etc. I also use it personally and can't say as I have any negative side effects from it aside from the odd vivid dream but I quite like my wierd dreams and used to have them before anyway.

    I'm sorry to hear your daughter had a bad experience but calling it an evil drug and advising against considering it for children is maybe a little harsh! The reason you and your doctors have only heard bad reports is because those having positive results from it, just get on and take it and have no cause to highlight the fact. You always hear bad reports about things before you hear good reports. Just wanted to make this comment for future users who may be researching montelukast on the forum, so they have both opinions.

  • Thank-you for your comment Butterfly and for your best wishes for my daughter. I apologise if my comments offended you in anyway, it's very difficult to articulate in words what a terrifying experience my family went through seeing our daughter go through such an awful experience.

    Hence why I turned to the drs and the Internet for help. Unfortunately English dr's particularly in the area I live in do not seem to have much knowledge of Montelukast and its side effects. (The dr that prescribed it to my daughter explained that it is a relatively new medicine for them to be using to treat asthma) so I did a lot of research on the Internet. As I'm sure you are aware it is a medicine that has come from America and is widely used there; however not so much in children now as it has become known as the ""devil medicine"" when used in children as it has caused awful effects for children. (Not all I must stress and I am very aware that it must be very helpful for some people like you and your daughter).

    Unfortunately my daughter is very young so couldn't tell me how she was feeling but luckily we are a very close family so we noticed the changes very quickly; to read some of the things that I have of how older children have also reacted to it (7 years old telling their parents they want to die) is also frightening and it scares me that a medicine can do this to anyone.

    Well I am aware that my daughters reaction was an extremely adverse one and doesn't happen to everyone I feel it is necessary that English parents/potential receivers of this medicine and English Drs are made more aware of these reactions. After reading a lot of the leaflets enclosed with this medication not one of them list any of the side effects I and many other on the Internet have described! All the leaflet tells you is to expect nightmares, sleepwalking or over excited younger children! I am just trying to gather as much information as I can about asthma and its medications so I can help my daughter while at the same time highlighting the problems we have had! Xx

  • Like any medicines what works for one may not work for another, in the same way some people get side effects others may not. Unfortunately, my son was one of those who got side effects and I have to agree they were awful. But given the choice we had I would try it again because the difference it can make to the control of asthma. Until you try something you never know and I don't regret trying my son on montelukast I just wish things could have been different for him.

  • Thanks Jenny and I'm sorry to hear your son suffered as well. It can be any medicine that we react too, for example I am allergic to penicillin!

    I agree that it absolutely controlled Evie's asthma but because of her reaction to it we have been advised by a consultant that even if she is advised to go back on it then we have to say no because she will never grow out of the reaction and it will cause life long behavioural problems so for that reason Evie will never take Montelukast again and we will find other medication to help control her asthma.

  • Oh no I would never put Thomas back on it now either! Thomas is also on Seretide 125, Flixonase, Nedocromil along with his salbutamol so they seem to be doing a pretty good job of controlling things at the moment. I am a little worried as his consultant said at the last appointment that at his next one they may look to start reducing some of his meds that is a scary thought especially as we are heading into the period where his breathing seems to have been worse for the last 2 years. I am just pleased we dont see the consultant again until November now.

  • Are all of those medications an inhaler? I am so new to this it's confusing! Evie has Clenil twice a day and we have Salbutamol as well but we've been told to only use this if she has an attack!

    Evie saw the GP yesterday and I was worried that he was going to tell us to reduce her Clenil as her asthma is currently under control but thankfully he has told us to keep it the same as it is under control and wait until we see our consultant in September. We've just got back from clinic as we were advised to get her height and weight checked and that all seems good at the moment too. We have to have that checked every 3mths while she is on the Clenil.

    I hope your consultant gives you the answers that you want; probably not the best idea to reduce in November as that's the time of year when coughs and colds are out in force again! Evie is obviously always worse when she gets a cold!

  • The Seretide and Nedocromil are inhalers, the flixonase is nasal spray.

    Currently Thomas is under 3 different consultants 1 for asthma, 1 for primary polydipsia and growth problems and 1 for ENT issues and also sees the dietician. I think sometimes opinions between the asthma consultant and the ENT conflict a bit as his asthma consultant still belives his adenoids should have been removed yet ENT say they didnt need to be but the theory is they have flare ups which then trigger his asthma.

    Thomas was only diagnosed last August so it hasnt been that long for us either. It has been a very steep learning curve over the last autumn/winter when he was frequently admitted and at times became pretty scary, I am just pleased over the last 5 months we have avoided any admissions and managed to control any attacks at home. Between July 2012 and January 2013 we had 8 admissions, one of those times he needed IV treatment and I hope I never have to see him like that again it is so hard to see your child ill.

  • Thank-you again; there are so many different medications to learn about very quickly! It certainly is a steep learning curve!

    Evie is currently seen by our GP and 1 consultant. I am sorry to hear about the other problems your son has. I've always found that the medical professionals like to contradict each other! Health visitors are the worst at it!

    Evie was diagnosed in January of this year but we've been taking her to the GP with a recurrent cough since she was 3mths old and always got told that it was a throaty cough not chesty and sent home! We went to hospital on a blue light when she was 1 as she went blue from coughing so much but again got told it wasn't on her chest! It wasn't until December 2012 when she caught croup that the dr finally paid attention to me! She was treated for croup but the cough didn't go and then a week later she ended up on a nebuliser and sent down to hospital again where she was finally diagnosed.

    Her last attack was when she came off Montelukast and was only on salbutamol before the Clenil was prescribed! I'm keeping my fingers crossed that the Clenil keeps it under control. I'm interested to see what happens next time she catches a cold now that we have the medication for her asthma; hopefully we can keep it under control.

    It is so awful to see your children suffer and have to be in hospital; I just wish I could have it instead of her. I hope Evie doesn't get any worse as it is the scariest thing to see and horrible that you can't help them. Xx

  • Jenny and eviesmummy are you both in England?

    I'm so jealous that virtually every parent that posts here, their child is under consultant care and has regular consultant appointments.

    What was the reasoning behind regular growth checks whilst on clenil ? My daughter was on it for a while and never had as much as a check to see how she was doing on it. She's now just started seretide and again no follow up checks or anything. An asthma nurse asked me a few weeks ago when my daughter last saw a paediatrician, she's never seen one yet she's had 4 different inhalers over the past 2.5+ years. ""Here's an inhaler, off you go""

    The nurse has referred us but it's a 7 week minimum wait, meanwhile my daughter is having 1 or more severe attacks every night. (sorry I ranted in your thread!)

  • Yes, I am in England. Thomas has been under the asthma consultant since August last year and in that time he had had 7 appointments so far. His last appointment was in May and this time was the first time we have a 6 month follow up, previously it has been approximately every 6 weeks or so. He is also under consultant only care which is reassuring and nice to see the same person every time. I think we just happened to be on the ward at the right time as when Thomas was on the ward on his 3rd admission in a week, the Respiratory Consultant happened to be on ward rounds and decided Thomas should be seen by him in clinic from then onwards. We didnt have a referral from the GP.

    Do you take your daughter to hospital if she is having severe attacks? Surely, if she is repeatedly being seen in A&E and admitted the hospital should be rushing through a consultant appointment?

    Thomas doesnt have growth checks as such but he is measured and weighed at every consultant appointment. His growth problems are separate to the asthma problems, he has recently dropped off the bottom of the centile chart for his height and it has been noted that he may need growth hormones but this is down to a problem with his pituitary gland rather than the inhalers.

  • Eviesmummy - It is probably best not to worry too much about the different medications as the consultant will advise what is best for your child. So far I haven't come across another child on these forums who is on the Nedocromil and infact my pharmacist said Thomas is the only one who gets it from him he said its quite unusual these days. Thomas doesnt have the cough varient he has what his consultant says is difficult to control asthma he rarely wheezes and sometimes the only way to tell how bad he actually is, is by the intercostal recessions and tracheal tug around his neck. I am still learning!

    You would never know Thomas has any other problems he deals with it all so well considering he is only 3. We dont tend to bother with the HV anymore too much lack of understanding!

  • Hi FionaM-

    Yes I live in England aswell.

    The reason behind the growth checks while taking Clenil is because it is a steroid drug and even though the dr has said they are being over cautious because she is a child obviously steroids can affect their growth; such as weight gain or stop their bones from developing properly. Evie has been checked twice now and so far we haven't seen any difference on her centile lines which is great! The drs just like to be over cautious sometimes.

    I'm sorry to hear you and your daughter aren't receiving the care you feel you need.

    I'm not worried about the medications; if she needs then she will have them! I just wanted some understanding while talking to people on here so I don't sound so clueless!

    I tend not to listen to HV about anything anymore; they all contradict each other! I just needed Evie checked today as she hadn't been checked since she last saw the consultant! She won't get checked again until she sees consultant!

  • Haha I can relate to that one when Thomas was first put on the Nedocromil I tried on here as had never even heard of it and wanted someone elses view on it but not one person replied to say they or their child were on it. I feel clueless every time we see the consultant and left in tears after one appointment where they suggested I was making up how bad he had been!

    It has been mentioned that some of Thomas's growth issues could potentially be down to the inhalers and number of courses of pred he has had. He has dropped from just below the 25th centile to almost below the 0.4th now.

    May sound a bit of a random question but do you find the weather changes and humidity affect things?

  • It's ridiculous having to fight to get help for a child with breathing difficulties. I'm really struggling with it just now. I just feel like no one will help or is trying to help. Not one single medical person has witnessed my daughter's asthma because it always happens through the night and when we phone for help, it takes them so long to ""give us an appointment"" and to see her, that the attack has passed and we're sent home to ""put her to bed"". Guaranteed, the same thing happens a few hours later, another attack by which point we think ""it's pointless calling nhs24"" so we struggle through it with her.

    The only thing we could think of as a trigger recently was the weather - but it's very much a guessing game for us because no one seems to know. Jenny, my daughter sounds like your Thomas - she doesn't wheeze, she is a cougher/gagger. OOH doctors wont listen to me because her ""chest is clear"".

    I'm really really sorry for posting so much on your thread Eviesmummy. I don't mean to butt in, it's just nice to see people posting here as it's been so quiet - and truth be told - I'm feeling really desperate just now. My hubby & I feel so darn alone and that no one will listen to us or help us. I could cry so easily when I think about how alone we feel and how ""at risk"" I feel my little girl is because of how we are made to feel. When I say at risk, I mean, we are judged when we ask for help from OOH, and they don't help, so we then feel it's a waste of time to try them the next time. I feel this puts her at risk - god forbid, but what if her condition got very very serious and we didn't get help? Doesn't bare thinking about.

  • Ahhh the amount of times I have heard the ""chest is clear"" statement. This even happened one time when Thomas saw the consultant at 10am by 3.30pm that afternoon i had called an ambulance. It is so frustrating, I knew he wasnt quite right but when we saw the consultant I told him I had seen him worse there is sometimes no predicting what will happen.

    We sometimes get some night time coughing with Thomas but when he is bad there is no obvious symptoms he can still be running around until he is quite ill, the only signs I can check for are the pulling in between his ribs and around his neck.

    FionaM - its times like this I wish they had the PM system :( What about just taking her to A&E next time? If you are giving 10 puffs of the salbutamol and its not making any difference I would be going to the hospital. How old is your daughter? I only ask because with Thomas we were told as he is under 4 only a consultant would prescribe Seretide as it is not licenced for under 4s?

  • Evie has been taking the medication throughout the summer so I haven't noticed that the weather has affected her asthma at all. Her asthma again always seemed to flare up at night time so only me and my husband ever witnessed it or after a long amount of exercise or after an illness.

    FionaM it sounds awful what you are going through: I know it sounds a bit drastic but next time why don't you call an ambulance and get taken into hospital that way? At least then you might get listened too!

    When we got sent to hospital to see the Paed our GP avoided sending us to A&E and referred us straight to the Children's Ward which is how we came to have a consultant. If the GP hadn't have done this I'm sure we would still be being fobbed off!

    Maybe ask your GP to do this!

    My theory with Drs is if you keep complaining for long enough they will eventually get fed up and will refer to someone else!!

    If salbutamol doesn't give her any relief then I would call an ambulance or drive straight to hospital.

    Please don't apologise for joining the chat; it's nice to hear other people's experiences as we are new to it and hopefully along the way we can help each other!

  • She was 4 in Feb. Some nights we can be 20+ puffs of ventolin and she's still coughing her wee lungs out. Reason we haven't used A&E or 999 is because we don't know what is ""sick enough"" to phone - please don't judge me! The treatment we've gotten from OOH has made us think like this :(

    We def have a cold-virus cough going as I'm coughing too just now, but it is def her asthma that is the nighttime coughing and not ""just a cough"".

    Jenny do you have facebook? I would love to be able to chat more to you without taking over poor eviesmummy's thread any further!

  • Oh gosh I am not judging you in anyway! Believe me I have had a battle getting the right care for Evie aswell and I totally sympathise with you as we shouldn't have to battle.

    Your poor little girl must feel awful bless her, I really hope that she improves soon as it horrible for her and such a worry for you as parents. I always think that ""mums know best"" so if you feel like she needs 999 or hospital then absolutely go for it. 9 times out of 10 you will be right.

    I've got my fingers crossed for you to find a solution for you all.

  • It's a wee bit outdated (hopefully it's ok to post links) but I just been reading this which I found quite informative - it's doctor info but it did help a little with ""what & when""

  • Thank you - I've been asking friends what they would do if it was their child - though none of their kids have asthma so they haven;'t experienced what you & I have - and they all say go to hospital. And I feel judged like ""why would you NOT go?"" but it's hard when you have had such rubbish treatment and when you get told something often enough, you begin to doubt yourself - ""am I causing a fuss over nothing""?

  • Oh my gosh that is a lot of ventolin! I would def be calling an ambulance or taking her to A&E, we go as soon as we have done 10 puffs and its made no difference. Just editing to say I am not judging you in any way as any parent with a child with asthma will know it is difficult when placed in that situation to make a decision on what to do.

  • I know you girls wouldn't judge, and I am thankful that I can be truthful with you!

    When you have done 10 puffs and it's not helped what do you usually do? 999 or A&E?

  • Oh Fiona, this sounds so awful for you and your family. As I said you know your little girl better than anyone so never doubt yourself and always go with your instinct. Being a parent is hard enough as it is without people judging or criticising us! We all raise our children differently but that doesn't make what we do wrong, we all do what works for our families. Xx

  • Thankfully we haven't had that situation yet but if we did I think my reaction would be 999 purely because if you drive yourself to hospital you can be waiting for hours to be seen, at least with ambulance they get you straight in! Especially if their breathing is really bad. Xx

  • If I have some one with me who can drive me while I look after Thomas, I tend to take that option. If I am on my own I always call 999.

    If you add me on FB I am happy to chat that way too x

  • I would prefer 999 - my feeling is the ambulance would get to use faster than we could drive to the hospital as it's in the next village over, it's a new & confusing hospital and that the ambulance people would be more likely to see my girl in an asthma attack than a doctor would if I lift her & go to A&E. I swear every time I have to take her to OOH she's fine by the time we get there!

    You have reassured me that I'm not out of my mind or overreacting (even though I don't feel I am overreacting or overprotective!)

  • I can't see you but feel free to add me - eviesmummy you too if you are on FB: ....(I'll edit & remove that after you've seen lol)

  • I've just sent a friend request to Fiona! I am Melanie Metcalfe!

    We've used both methods to get Evie to hospital unfortunately! We had to call an ambulance when she was a year old as her hands, arms and mouth went blue, she was rushed to A&E but sent home with no diagnosis even though she was clearly poorly. We ended up back in our local hospital 2days later as she was being violently sick and high temp; she was diagnosed with a hypoxia attack and tonsillitis but the cough got ignored as her ""chest was clear""!

    When she was put on nebuliser at the GPs in January she was then referred to the children's ward we drove her ourselves as the nebuliser had helped her and eased the wheeze until we got to hospital.

    Unfortunately our nearest hospital is a 15mile drive away and on the wrong side of the city for us to get through the traffic so an ambulance would get her there a lot quicker than we could!

    I've also found that A&E drs aren't always that helpful with children as they don't specialise in children's illnesses! Evie's consultant informed us that her asthma probably went unnoticed for so long as in small children they very rarely get a ""wheeze"" they tend to get a choking cough more often as they aren't developed enough.

  • I got you thanks ladies.

    Melanie, that is exactly Kirsty! No wheeze, just a choking cough, she gags horrendously bless her heart.

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