Can Singulair cause insomnia?

I've just been told Singulair / Montelukast can cause sleeplessness and that there is another similar drug called Zafirilukast that could be worth trying instead. I've just googled it and it seems to say it's not for children under 12 years and my son is only 6? It also says it can cause sleeplessness too and is taken twice a day so taken nearer bedtime?

I'm really not sure what to do and whether it's worth continuing with this drug?  We are being prescribed it to prevent asthma (they say our son is high risk) rather than treat current asthma so i have no way of measuring if it's working, and therefore worth giving!

I'd appreciate any advice.

Kitty

 Hi Kitty, 

Our 2 year old son is on Montelukast and has been for quite a while now.  I don't think it has this effect upon him, but then he has always been a bad sleeper as he gets hungry and has to have Neocate every night.  He takes him in the morning- not sure when your son has it?  I don't think it affects his sleep, but I also have no idea if it does anything as it is also to help prevent asthma.  

Sorry I can't help anymore.

Paula

Hi  Paula

Thanks for replying to me. I was giving the Montelukast in the morning to try to reduce the effect on his sleep but he's become distressed this week about terrible nightmares. Teh last 3 nights he's also been waking loads with pain in his hands and feet. I've stopped the Montelukast and will give it a week to see if the sleep improves. If it doesn't then it can't be that and i'll put him back on it.

The nightmares have been really bothering him and he now won't go upstairs on in another room without me. Him and his brother want to know where i am all the time and i have to go with them to the loo or upstairs and they are now more fearful of the dark.

Does your son take Ketotifen?  I noticed that says it can affect sleep too so wasn't sure if i should move that to the morning instead of evening but i don't want it to affect him at school.

What i find hard about EGID is there are so many symptoms and i never know what is the EGID and what is something else. The sleep issue is so difficult and they get so tired that their behaviour can be tricky.  Do you find this with your son?

I always wish i understood more so I knew how to help them. I hope new research being done at Great Ormond Street might give us some more answers!

How are things with you at the moment?

Thanks,

Kitty

 Hi Kitty, 

No our son does not take Ketotifen as that made he so sleepy that he couldn't wake up at all.  

We are having a hard time at the moment as our son can only eat potato and we have not been able to find any other food that doesn't make him ill.  He is now 2 and is becoming so upset that he cannot have anything else at all.  He spend half the day having tantrums because he wants other things.  He has two siblings who are fine, but they are very good and don't eat anything in front of him which we know he would want.  We don't eat in front of him if we can help it at all as it is too upsetting.  I can't even take him to the supermarket anymore as he just goes mad, screaming for things- chocolate and sweets (even though he has never had them!) that in the end I have to leave. He gets in such a state that there is nothing you can do to stop him.  We keep trying foods reccomended by our lovely dietician Rosan, but we are really struggling as even if he seems reasonably okay to start with, things make him ill the longer he is on them.  

One of the hardest things is people say to me that he looks so well so they can't see he is ill.  He actually looks terrible  think as he has greyish skin and dark circles around his eyes and gets rashes and sores on his face and bottom.  

We were up again today at 4 am as he was being sick and so were watching Fireman Sam from then until it was time to get up.  If he is sick once there is no way that he can lie down again as he has reflux and will just be sick again and again, so I end up sitting up with him.  He now has diarrhoea and is feeling pretty poorly.  I just feel like all we do is fill him full of medicines and have no idea when he will be able to eat anything else.  I am dreading Christmas as so much of it is about food.

Sorry to go on, but there are so few people who understand what this is like.

I hope you figure out your son's medicines soon.

Paula

 Hi Kitty, 

No our son does not take Ketotifen as that made he so sleepy that he couldn't wake up at all.  

We are having a hard time at the moment as our son can only eat potato and we have not been able to find any other food that doesn't make him ill.  He is now 2 and is becoming so upset that he cannot have anything else at all.  He spend half the day having tantrums because he wants other things.  He has two siblings who are fine, but they are very good and don't eat anything in front of him which we know he would want.  We don't eat in front of him if we can help it at all as it is too upsetting.  I can't even take him to the supermarket anymore as he just goes mad, screaming for things- chocolate and sweets (even though he has never had them!) that in the end I have to leave. He gets in such a state that there is nothing you can do to stop him.  We keep trying foods reccomended by our lovely dietician Rosan, but we are really struggling as even if he seems reasonably okay to start with, things make him ill the longer he is on them.  

One of the hardest things is people say to me that he looks so well so they can't see he is ill.  He actually looks terrible  think as he has greyish skin and dark circles around his eyes and gets rashes and sores on his face and bottom.  

We were up again today at 4 am as he was being sick and so were watching Fireman Sam from then until it was time to get up.  If he is sick once there is no way that he can lie down again as he has reflux and will just be sick again and again, so I end up sitting up with him.  He now has diarrhoea and is feeling pretty poorly.  I just feel like all we do is fill him full of medicines and have no idea when he will be able to eat anything else.  I am dreading Christmas as so much of it is about food.

Sorry to go on, but there are so few people who understand what this is like.

I hope you figure out your son's medicines soon.

Paula

Hi Paula

I'm so sorry to hear how bad things are at the moment. It must be awful for you all, and like you said, Christmas is even harder. My children are lucky they can eat more foods but even they get upset that they cannot eat all the goodies on the shop shelves. A few months ago our 6 year old sat on a shop floor and cried because he said he just wanted to be like everyone else. I really felt for him and wished I could change things.

I think people don't realise how hard it is psychologically and emotionally for our children. Our sons school said to me a few weeks ago that it wouldn't matter if our son couldn't eat the food at the xmas party as it was just after lunch so he wouldn't be hungry! They couldnt understand that it didn't matter if he was hungry, it would really upset him to be sat there watching the others eating party food if he had nothing! I sent in a plate of his own food for him but wished they had understood.

I know that 'they look fine' statement - i get it lots too and when they were young i don't think people believed me sometimes how bad things were. That really hurt me. I think we notice the skin colour and dark eyes more than others do - it's like we get used to the changes in them when their guts are flaring.

I remember both of mine at about 2 years old, it was hell - one vomiting and in pain and the other diarrhoea and in pain. Neither sleeping for more than an hour or so at a time.  If it gives you any hope then mine have improved since then and although it's a slow path we are heading in the right direction. I really hope your son improves too.

When are you next at Great Ormond Street? Are you seeing Dr Shah again?  Have they got a plan for your son? Will they be trying any new drugs if things don't improve? Did you say they had him on Neocate now?  We are next at GOS in February.

I hope you have a nice Christmas and that your son copes  with it. I am praying for a pain free Christmas for my boys too.

Take care,

Kitty

 Thanks Kitty, it is good to speak to someone else who understands. I agree, it is the psychological stuff that is the hardest.  I can see him thinking already, wondering why he can't have the same as other children.  We were at a friend's to play the other day and she gave her child a chocolate biscuit and Harry was just beside himself. She told her daughter not to give him any but really didn't seem to appreciate how mentally hard it is for him. 

That is heartbreaking about your son and I know exactly how you feel.  I don't think I ever realised how much life seems to revolve around food in so many situations until I had a child like this.

My son is currently on Azithromycin which is helping I think, although he has still be pretty poorly and is having steroids every few weeks.  I need to contact Neil Shah actually as he asked us to keep him updated.  We have been seeing him at Viveka recently and so are also due to see him around Feb / March too.  Dr Shah said that there are a few more drugs that we can try Harry on if the ones he is on don't keep him stable enough.  It is a tricky one though ins't it as the next couple of drugs apparently as so strong that the side effects are very bad. 

Well hopefully Harry will sleep better tonight.  He has been so tired and clingy all day, with a sore tummy. I just hope the research that Neil is doing at the moment helps them come up with some more ideas about this.

Hope you have a good Christmas too.

Thanks a lot Kitty, it really does help talking to another mum.

Paula x

Hi Paula

We've been told the same thing - that a step up in drugs will bring lots of unpleasant side effects and risks. Whilst we are coping we are sticking where we are but i do worry sometimes that we aren't doing enough to ease his discomfort and his bowel problems. This is still having an effect on his eating and he often refused food. He starts school soon - that is my biggest worry. How will he manage? I worry that we should be doing more exclusions with his diet (he currently only avoids dairy, egg, soya) but i know if we do then that may stop him eating the few foods he will eat (mainly dry snacks so contain wheat/gluten) and we really don't want him to be reliant on liquid feeds.  It's difficult choices. I'm sure its the same for most EGID families.

I find it helps talking to other mums too as i often feel other people really don't understand- only a family in the same situation can understand.

I hope Harry, and you, have a nice Xmas.

Kitty

Hi Paula

I really feel for you and Kitty with it all.  I have 2 children and my daughter is on an egg, wheat, dairy and soya free diet and it is hard work.  She has now become fairly accepting of it to a point but it is still tough.  Kitty has loads of recipes on here for really great alternatives.  I always try to have things Izzy really likes with me.

If she goes to a party we take her own things - easier that way but I try to send her with similar things like free from cakes or sweets so she isn't too different.  I cjeck with the mum o if there are sausages, I do her free from ones etc..  I also find that cooked meals like at soft play places are good as you can just substitute the free from main thing like fish fingers.  I do find it hard being free of all 4 things as a lot of free from food has 1 of the 4 in it.

I got the day of our schools christmas lunch wrong and had filled my daughters lunchbox with every treat I could.  She was very pleased as she got the same two days running!

My son is completely nil by mouth as he is on parenteral nutrition (fed via the vein into his heart).  It is so awful for him.  he constantly wants to smell peoples food which drives our daughter mad.  During our evening meal we will take our plates to him to smell anything up to 10 times.  i think it is harder at this time of year as so much of xmas centres on food and food is so much part of our culture.

My son is on a hell of a lot of medication.  i would be more than happy to advise you on anything else suggested.  There are a lot of potential side effects as you progress through the different drugs but there are benefits too.

Really hope you are able to have a good xmas.

Helen

 Thanks ladies, it really does help to speak to other mums.  Helen, your poor son! I thought my little one was bad being only on potato and Neocate but at least he can eat potato.  

Kitty I too worry about my son going to school.  He could start nursery next September but I am going to keep him at home for another year I think as he just can't eat anything apart from crisps and chips.  He hates mashed potato and boiled potatoes and I don't think I would eat them dry either.  

Hope you all have a lovely Christmas

Paula

Hi Helen

I do the same as you and take things to parties and try to match up food where i can. I can't imagine how hard it is for Ben being nil by mouth. When you have feeding problems within the family you do realise how much of our day is centred around food and i find myself thinking about food and eating a lot of the time because it's such an issue!  Really nice of you to offer advice on the medication. I read your other post about elemental 028 and i will raise it with Dr Shah in March. Do you think it may be worth trying my son on it as he has had more flare ups lately and more swinging between diarrhoea and constipation and they changed the neocate to lcp earlier this year didn't they? 

Have a lovely Christmas,

Kitty