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dilemma

GGchar profile image
13 Replies

so continuing on from my last post. My daughter is still suffering with her Asthma. And taking a very large amount of Ventolin over nearly 2 weeks. Every time we see the nurse they listen to her chest and say she’s fine. No wheeze she’s fine! But that’s because she’s just taken her inhaler in a few hours she will need it again!! What should I do stop my daughter taking her inhaler before we go in the room? All she needs is some steriods 2 weeks ago but it’s just going on and on!!! 😫

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GGchar profile image
GGchar
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runcyclexcski profile image
runcyclexcski

Sometimes people with ashtma do not have a wheeze. A letter from her specialist/GP showing that she has been previously diagnosed would help convince the nurse to sign off a pred prescription. The practice can also print out an action plan for her (with the name of the practice, their phone number etc); this also can be shown to the nurse. An asthma action plan explicitly states in what situation to take a prednisone course (mine does). So the nurse can see that you are following specific instructions from a specific particle. Also, you can go to another AE.

GGchar profile image
GGchar in reply to runcyclexcski

Yes but without a wheeze No steriods 🙄

runcyclexcski profile image
runcyclexcski in reply to GGchar

When I faced resistance from them ("no wheeze >>> no steroids"), I would politely tell them that I will keep coming back b.c. the asthma was not controlled. I would just not take a no for an answer until I got what I wanted. It's frustrating. Sometimes I would drive to another AE. One way or another, I always got my preds.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

Will they not let her see someone else? The nurse is being ridiculous denying steroids for no wheeze given that's not necessary for asthma - they are being ridiculous not looking at the big picture or following guidelines!

Can you take it up with someone else in the practice? I think I mentioned before it may be worth calling the asthma nurse helpline if you haven't already, as they can advise practically on what to do when you're not getting anywhere/what to say: 0300 2225800 or WhatsApp 07378 606 728 Monday-Friday 0915-5pm

Troilus profile image
Troilus

Hi GGchar. It might be worth your while booking an appointment with the GP.

In the long term get your daughter to take her peak flow and record it as a graph. I do one line for before meds and another line for after meds, both taken at the same time each day. When I am having problems I show this to the GP. It seems to do the trick as they can see the downward spiral. ( I don’t wheeze either and have been denied treatment in the past.)

GGchar profile image
GGchar in reply to Troilus

Yes we keep a record! The best is 400 and at the mo it’s under 200

Troilus profile image
Troilus in reply to GGchar

Has she got an action plan? For your daughter 200 is near enough her red zone. Did you get to see your GP? If not, you could try 111 it being the weekend.

Birthday60 profile image
Birthday60

I am sorry about your poor experience- I hardly ever have an audible wheeze but have lifelong severe asthma - a new nurse at our practice claimed I was fine as I’d walked in unaided and refused me treatment but 2 days later my regular asthma nurse called me as she was worried I was poorly - I never ask without reason .!

Spikedog66 profile image
Spikedog66

Maybe needs a referral to see a specialist. You don't mention a preventer. I apologise if missed earlier post. How old is she? Paediatric service for asthma is much better than adult services. Some asthmatics don't wheeze. Cough variant asthma no wheeze. I think investigation is needed maybe she takes it due to stress.

watergazer profile image
watergazer

I would see the GP. Does your daughter have a peak flow device as this is an indicator that the asthma is not controlled My asthma is more of a cough than a wheeze I also have a plan in place with regards my peak flow. Hope she gets sorted x

GGchar profile image
GGchar

thank you for your reply’s! She is 17 and unfortunately got discharged form the consultant at age 16 apparently she’s now an adult!! 😡 and needs to be referred again as an ADULT!! Bloody joke. She has finally been given steroids so fingers crossed they work. As she’s been maxing out on her Fostair and salamol for nearly 2 weeks. But going in the right direction 🤞

Homely2 profile image
Homely2Administrator

I have asthma but do not wheeze, my chest just seizes up and will not work.

With a decent asthma nurse the lack of wheeze is no issue, with a bad asthma nurse then you get a problem.

My asthma gets truly bad at 40 percent of peakflow, then it is ambulance time.

You need a referral to a consultant, and explain the problem and get him or her to write a letter for your file setting out what you want, then just wave the letter at anybody who will not help. Similarly wave the asthma plan.

Also get the consultant to give your daughter access to a hospital asthma nurse, who you can ring and leave a message for, mine is brilliant

You will then have a choice of going to your gp asthma nurse or your hospital asthma nurse. This will give you room for manoeuvre. I need this when my gp asthma nurse goes on holiday, her replacement believes no wheeze means no asthma.

GGchar profile image
GGchar in reply to Homely2

Yes we had an amazing asthma nurse at the hospital but they just throw her to the carb when she turned 16! I’m so angry. It’s been 2 years trying to get referred to the adult consultant.

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