Am I over reacting???????

Hi I'm new to the site and have a 14 year old daughter who was diagnosed with brittle asthma when she was 6. This involved the occasional hospital visit when she had a chest infection but was otherwise well managed. Gradually over 12 months or so (probably coinciding with puberty) she has become increasingly symptomatic having been into hospital 5 times this year despite increasing and adding to her meds. Obviously this is a cause of concern to both my daughter and me but when we went to see the consultant he informed us that because my daughters lung function had responded well to oral steroids we shouldn't be too concerned and that she wouldn't always be this symptomatic (it took 4 weeks of oral steroids to get the function back to 100% which suggests all is not well) Despite repeated requests the consultant refuses to refer my daughter to a clinic for 'difficult asthma' or allergy testing and is reluctant to actually do anything. Am I missing something here? My daughter continues to be symptomatic despite taking 8 Steroid tablets a day plus various inhalers yet the consultant keeps telling me we need do no more (he actually suggested I take a step back and let my daughter manage her asthma which surprises me as she is a little tinker for lying about her symptoms in case it gets in the way of her social life!) Anyway sorry to go on just wondered if anyone had any thoughts because we feel we are totally in the dark and unsure what to do?

6 Replies

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  • Hi,

    The fact that it took 4 weeks of steroids to return her lung function back to 100% is not in itself a problem, When she comes off the steroids, what happens then ? If she has symptoms, and has them for more than a few days continuously, then that is not a sign of well controlled asthma. One option would be to email the asthma advice team, and then take the email reply from them to your GP, but don't show it to him unless you have to, just tell him you have had advice from them, and that usually works, after all, the team on the advice line are excellent, and thats all they deal with and know far more than most GP's regarding asthma.

  • hey,

    I'm really sorry to hear your daughters not very well atm, after 5 addmissions to hospital this year, I agree your daughter should be being seen by a hospital that specia;ises in difficult asthma, if your consultant wont refer you, you could go to your GP and ask him/her to refer you?

    The other thing is about your daughter managing her asthma herself; I'm now 18, but at the age of 14 I was managing my asthma myself, my parents looked at my peek flow charts and asked me how I was and came with me to the doctors/hospital ect, but i was 'incharged' as such. On here there is a message board for young people its under kick asthma on the homepage, perhaps your daughter could take a look.

    Another suggestion is ringing the asthma nurses on here (the numbers on the top right hand corner) they are great and should be able to provide you with some advice, on getting refferals and other things.

    I hope your daughters on the mend

    ally x

  • Hi Seany,

    Sorry to hear that you feel your daughter's asthma is not being managed adequately by the consultant. Like woody says I suggest you email the asthma advice team. If your daughter has been diagnosed with Brittle asthma, perhaps doing a difficult asthma protocol at a difficult asthma clinic might be a good idea to see if there are any other conditions at play, to determine actually how severe her asthma is and to see if any changes need to be made to her treatment. If after speaking to the asthma advice team you still feel your daughter needs to see a specialist, speak to your GP and ask if it would be possible giving the reasons you feel she should be referred to one.

    I agree with Ally perhaps the suggestion from your consultant is a good one to allow your daughter to take her own medication, I am now 20 and I have managed my own asthma medication since I was about 4 years old (just the inhalers though) and tablets etc as I got a bit more older. The fact that your daughter has had 5 admissions this year, might mean she will be a bit more responsible about her treatment because it isnt nice being in hospital especially for a teenager and their social life, school and exams.

    Hope your daughter and yourself are doing ok.

    Simi.

  • hi there

    i'm 17 and thought that i would give you some advice personally on how i feel about the situation

    i agree with the other replies in that you should definatley push for a referal, hopefully you will get there , you sometimes just have to push an push an push

    also i think that by giving your daughter the independance to mange her own asthma is good but i have some advice for you : definatley let your daughter take her own inhalers but maek sure you check up on her occasionally and do it suprisingly! . make sure they are working and as you say ""not interveening with her socail life !""

    as a 17yr old i no what its like i could have done with being checked on when my parents made me independant because of the way things started to slip an the problems i had at school ( i posted my story on the thread - multiple puffs and dont be put off by it ) ITS GOOD TO HAVE THE INDEPENDANCE JUST KEEP A CHECK ON HER NOW AND AGAIN

    GOOD LUCK

    XX

  • Thanks for the advice guys - there's plenty there for me to try so I'll contact the good people at Asthma UK to start with and see how we go. You're good people. Thanks again.

  • I second what everyone else says!!

    would your daughter consider going on a Kick asthma holiday as here they learn all about self management as well as having a fab time - often doing things they thought they wouldnt be able to do because of their asthma.

    My daughter is 12 and she has taken on most of the responsibility for her meds for about 2- 3 yrs now - i ,keep an eye and often need to give the odd nudge but she has learnt the hard way that when she doest take her meds she suffers (not to the level of an attack though!) eg she is a keen singer and she wasnt taking her piriton regularly and due the high pollen she got a sore throat which caused her singing to lose its quality and she had entered a talent show but didnt get into the final because she was a bit croaky and chesty. - she was upset but lesson learnt.

    what i have also found is nagging can also lead to a bit of a revolt but it is hard to find a happy medium - keep trying and good luck.

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