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Clenil steroid inhaler dosing - agitation.

1 reply

jellycrowpigs · 31/05/2025 08:13

Our 2yo has been ‘off’ for a while, she has become increasingly anxious/scared (won’t go into my mums house if other relatives are there scared), anxious, angry etc. She was also increasingly tired.

she has also complained of some neck/mouth pain and some days won’t eat, and doesn’t want to move her mouth to the point where she just won’t talk.

we were concerned so took her to the gp. The gp looked in her ears and she had a meltdown , and we got sent to the hospital as ‘this behaviour isn’t normal. She’s slow to warm at the best of times, but she’s mega anxious lately.

we got to the hospital, she napped for 5min in the car and then we woke her (argh) she hadn’t napped, and she didn’t get time to calm down so had a meltdown again when they tried to do obs. I have a lot of concerns around the approach, because as soon as the play therapist arrived to engage, she was right as rain.

anyway, she was called psychotic and aggressive and we spent all day and all night there and nobody actually looked at her mouth or anything, just concerns over behaviour (and opened a safeguarding without our consent but lied and said we consented) but…

on discussion with my health visitor family members, we figured out this ‘behaviour’ has been going on as long as she’s been on clenil preventer inhalers.

it was assumed she may have asthma when a nurse on a routine visit noted she had mild eczema so we were referred to the asthma nurse. The asthma nurse prescribed clenil 100ml, 4 accutations a day so 400mg.

she never had a wheeze, we barely ever considered asthma besides some coughing after running around, is there any reason why she’d have been put straight on the maximum dose?

has anyone else had experience of behaviour changes in this medication? Just wondering why the hospital wouldn’t have flagged it knowing what meds she was on, if it’s a side effect?

OP posts:
mumofonedaughter · 03/11/2025 10:18

I think they must be incentivised in some way. I was put on it as an adult. It affected my sleep and I came off it gradually. During my withdrawal I experienced the worst asthma I have ever had, it felt like the front of my chest had been stapled to the back. I got through it and now take Salmeterol which is classified as a long acting preventer. But I still need to be quite forceful that I am not going on another steroid inhaler. By the way - is your daughter on Montelukast? I had the most awful nightmares on that. Thankfully I realised quite quickly what it was, but I have since discovered that it is often given to children?

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