Desperate for help

[Lou0312]

Hello everyone,

I’m praying someone could share light on this for me as I’m really starting to give up hope in finding and answers or solutions!

I have a 5 year old child, both mum and dad asthmatic so he is treated for asthma with both brown and blue inhaler but not fully diagnosed yet.

For the past 12-18 months he has suffered around 12 bouts of croup maybe more due to asthma night time cough constantly developing regularly.

It used to be only now and again but I would say he is coughing/choking for about 4 hours of the night sat upright trying to calm down with a spacer about every 2 weeks now maybe even more. End result is always having to go to hospital for steroids to relieve him.

The episodes are getting more frequent now so much so that as soon as I hear one cough at night time I know what’s coming.. 3+ days of no sleep and him suffering so bad. Also this is getting to the point where he is having emergency prednisolone or dexamethasone (steroids) almost twice a month.

I’ve also phoned an ambulance 4 times in the past 6 months because of the extreme it’s got to..

I have tried EVERYTHING, he has a cold mist humidifier that I am using regularly, we have tried antihistamines, acid relief treatments incase it’s Reflux, steam, medicines, cold air, vicks..

I’ve been pushing and pushing the docs for someone to help but they just keep fobbing me off everytime and I’m almost at breaking point as to how to help him as it’s just progressively getting worse!!

Please could someone advise?!

Thank you so much

[EmmaF91 Community Ambassador]

Hi

Sorry to hear this. If you’re not getting anywhere with your GP ask for a referral to a paediatric respiratory consultant. Also ask if there’s any add on medications he can have such as montelukast or maybe a different preventer. If the GP doesn’t want to point out how many trips to hosp he has had and how many courses of steroids he’s been on recently and point how that’s going to cause long term issues in your child, even if you ignore the risk he’s in atm with the frequent attacks.

I hope this helps and a solution to help you boy comes about quickly

[Poobah]

Hello Lou, that is so distressing for you. Emma is bang on point about going to GP and asking for a referral to address this issue. It is very disruptive to your son's health and wellbeing to have so many night exacerbations. Responding with short term meds repeatedly suggests that a proper and thorough review is now required in order to get a stable treatment package in place that will bring things back to normal.

I know that when I started school at 5 my asthma took to being more brittle and many a night my poor mum would sit with me and give me physio and meds. I didn't get Ventolin until I was 7. I had to take prednisone. I hated it.

One thing that only became clear later on was my intolerance to aspirin. I was using wet inhalers and they were making my asthma worse (intolerance to the propelent). It took the Drs years to twig and it was only because I mentioned that I had had two bad reactions when taking aspirin for pain. I was so cross as it was something that they knew was a problem for some asthmatics but chose not to screen patients. The moral? We have to take the initiative.

Good luck with your referral request.

[ChrissieMons]

I assume that with mum & dad having asthma, you’ve eliminated all the usual suspects like pets, flowers and so on. You must see a specialist as soon as possible so you have time to talk about these issues- you can’t do it in the rush and worry of A&E . You need a long term plan, not panic management which is what your GP seems to be going with at present. Good luck!

[Cross-fit]

Hi Lou. You poor thing. That sounds dreadful and you have to get this sorted. My poor parents had a very similar experience with me when I was a little girl. The turning point for them was when I was put on a powder preventor called Intal. Don’t think they use it anymore, but my point is that the brown preventor has NEVER worked for me. I believe having a good preventor that works is the key to preventing these acute flare ups your poor boy is experiencing. I use Symbicort now which works well plus Montelukast which is a tablet I take at night. I used to have awful allergy triggered asthma until I started taking that. Now I can go near any animal with no wheeze!! If you have private insurance I’d go to a Respiratory consultant and get this sorted. The GP’s are so pushed for time. Your son needs proper care.

I bought my asthmatic son all anti allergy bedding and that helped his chest enormously as dust mite allergies can also trigger bad asthma at night. We went to Dr Adam Fox at Great Ormond Street and he helped us so much. Message me if you want his secretary’s number. The company I use for bedding is ‘Allersafe’.

All best wishes to you and your boy.