DD's asthma - I'm out of my depth :-(

[Schulte]

Hoping some of you lovely people can help. DD2 (9yo) was diagnosed with asthma about 2 years ago and I'm still learning. She's got the brown Clenil Modulite 100mcg inhaler and normally takes one puff morning and evening, and barely ever needs the emergency inhaler (maybe once a month while exercising). Two weeks ago she suddenly started needing the emergency inhaler a lot more, at times when she's never needed it before. Twice in the space of a few days she came downstairs after bedtime and said she couldn't breathe properly - she hadn't been running around, just lying in bed.

Took her to the GP who said it was probably a virus, despite the fact the she had no other symptoms at all. GP agreed we could up the brown inhaler to 2 puffs twice a day (which I believe is the maximum dose) and to do that for 10 days or so. It seemed to help but the 10 days are over and we have tried to get her back on her usual dose by reducing to one puff in the morning, two puffs in the evening to start with. Did that on Saturday and Sunday and on Sunday evening she came downstairs again after bedtime saying she couldn't breathe.

I'm a bit freaked out because I don't know what's causing this exacerbation, I don't like that she is having trouble from just lying in bed.
Has anyone else experienced this?

She's been sleeping in my room since it all started. I've upped the brown inhaler again to 2x puffs morning and evening but does that sound like quite a high dose to you? The leaflet says it is the maximum dose a child her age can have. How long can I keep her on that dose for without worrying that she's getting too many steroids? I have an asthma nurse appointment booked for next week but that's still over a week away. Is there anything else I should do?

Any advice would be hugely appreciated. Thanks!

If I were you I'd call and ask for a phone call with the asthma nurse if your surgery offer such a thing? Ours do. I wouldn't take advice on here for such a serious issue if you are concerned about her breathing. Call the surgery. Hope you get the answers you need to help her and see your mind.

That dose will he fine for her to be on, it can actually still go up higher if prescribed by a paediatricitan and the amount of steroid actually kept in the body is actually very low. But if she still struggling with her breathing then you need to go back to the gp for another review. Keep a note of her symptoms and how often youre having to use her blue inhaler and do regular peak flows if you do them so you can show the gp how her symptoms have worsened.

I'd love to talk to the asthma nurse on the phone but the surgery don't offer that - earliest we can talk to her is next week. Asthma UK helpline is closed today too as all the nurses are on training. Believe me I've tried talking to the professionals before I came on here.

So, if anyone can share their own experiences... and perhaps there are others whose children are on the same dose longer term and can reassure me?

Thanks IwillrunIwillfly. Her peak flow has actually gone up and is now higher than it has ever been. We did it just before she went to bed last night and it was absolutely fine and then half an hour later she needed the blue inhaler. It doesn't make any sense to me...?

I always find this is the worse time of year for my asthma so it might just be change of weather thats triggered it. Using the higher dose of preventer will be fine for the extra days and your DD may be permanently put on that dose after your appointment. Is it worth trying to get a telephone appointment with GP?

My ds (6yrs) is on 4 puffs a day of 100mg Clenil.

At his last asthma check up they increased the dose to this, he was on 2 puffs a day before. When he was only on 2 puffs he was needing to use his blue inhaler most days especially in cold weather.

So far so good with the new dose, he had a minor cough/cold last week where we had to go back to daily blue inhaler - 5 puffs - at school but he's over it now so we've stopped that.

This time of year is tricky, cold air affects him more than exercise. Also the sats levels drop when they're asleep & that's normal.

Maybe check the temperature in your dds room in the evening, make sure it's not too cold or too hot & stuffy.

When ds is having a period of asthma he sleeps with an extra pillow which seems to take the pressure off his chest.

Could it be allergy related? Allergies sometimes affect mine in that way. I’ve also had massive issues with bedroom carpets before - 6 months of wheezing until early got rid of a very old carpet

Heating off, window open in his room, double layer of pjs works for ds 4. And have just got him a snood to wear outside. Encourage dd to wear a scarf wrapped over her face in the cold!

My youngest brother since 2 years of age had chronic asthma. It was forever changing too. Allergies are a big issue sometimes. Different times of year. Food can trigger some allergic reactions. My brother would flare up big time by my mum just hoovering or cutting his hair. All hairy animals and birds, especially cats, even if they were not in the same room. I take it you have allergen mattress protector pillows duvet etc. Hoover the mattress etc. My ds only coughs at night, loads....in the day no cough at all usually.

Thanks for all the advice, feeling a bit happier now. I was wondering about dust and have just thrown all her bedding in the wash, again. Is it a bit OTT to have her sleeping in my room for fear that she might have trouble in the night?

If you will worry more with her on her own then no I don't think it's OTT to share with her until you have seen someone. My mum still used to prefer me to sleep in her bed if I'd had a bad attack until I left home.

Yes, we have to avoid cats too. I gave one of DD's friends a lift on Friday and before she jumped in our car, this friend had a big cuddle with a massive cat, which probably left bits of cat fur all over the fleece she was wearing. I nearly told her that she couldn't have a lift after all... do I need to hoover our car now? We did spend quite a lot of time in the car yesterday so perhaps she did shed cat hair on Friday and that's what triggered this particular episode?

Be particularly careful and vigilant if the asthma is triggered by an allergy. It would seem the cat was the trigger and there is still dander in the car. Unfortunately you will have to do your best to avoid these situations. If that means no lifts to anyone with pets so be it. Lifelong asthma/allergy sufferer here.

Thanks all for your help yesterday. Update is that we ended up at the out of hours doc, who was fairly certain DD's problems are caused by a virus . He has put her on a regime of 4 hourly salbutamol, reducing over a few days from 10 puffs each time to 2 on the last day. Assuming this is fairly standard when a cold affects the child badly?

I was also going to suggest possible allergies op , taking an antihistamine along with my blue/brown inhalers is often really helpful.

It sounds like you're beginning to get a handle on what treatment she needs. Learning to manage asthma can take years and changes as the seasons do.

And yes ,what your gp suggested sounds pretty standard when I look back to treatment during my own childhood.

One thing I will suggest is making sure that you involve her in decisions and suggestions when dealing with treatment. Also talk to her about repeat prescriptions, how you get them etc. I know she's young but she'll be able to handle her symptoms better as she grows this way. You probably do all of these things already though

I hope she feels better soon.

Glad you are getting somewhere OP. You could also try raising the head of her bed (I used to have a couple of books under the top legs when I was your daughter's age and this helped with breathing at night, particularly when I had a cold).

Glad your getting somewhere

As a small note though change in preventer inhaler takes a few weeks to be fully effective, for that reason ds specialists have always told me that increasing when ill is no longer reccomend as it’s pointless!

A daily antihistamine could help. What kind of flooring does her room have? Curtains in her bedroom? Do you use anti allergy bedding? My brother has brittle asthma and my parents found it got better after they replaced his bedroom carpet with laminate, his curtains with a blind and bought anti allergy quilt, pillows and mattress cover. He also had a humidifier as dry air made his asthma worse so the central heating in the winter exacerbated it. Ask your GP or asthma nurse if your dd can be referred for allergy tests and yes, hoover the car.

Thanks all. Seeing as she's normally pretty ok and rarely needed her blue inhaler before this started, I don't think it's anything in her bedroom causing this flare-up... we do keep it as allergy friendly as we can but she won't part with her soft toys etc yet. I'm permanently under the bed and on chairs wiping dust off those hard to reach places . Noted re the antihistamines and that the steroid inhaler takes a while to kick in properly, although from her peak flow I can usually see an effect within a few days of starting it.

Hello OP. I don't know how relevant or otherwise this might be for your DD, but is she anxious about her breathing? Apparently, sometimes asthma anxiety can kick off when someone's lying still, because suddenly a person can be very aware of their breathing (not noticed so much when rushing about). Then anxiety can exacerbate, or even cause, breathlessness. May not apply to your DD, and of course important to see to the physical side, but thought might be worth considering.

I was wondering about that and there could be an element of it... she has certainly become more aware of her asthma and what trouble it can cause her

I would definitely take advice from the asthma team rather than on here but I would say that our asthma nurse said that if symptoms are worse after a cold or virus, try giving one puff of the reliever inhaler first, wait a minute or so and then do the two puffs of the preventer. This opens the airways and allows the preventer to do its job.

Also, make sure DD is using a spacer and taking four breaths after each puff to clear the spacer fully.