brittle asthmatic?

hi,

my son (now 7) has been moved from clenil to seretide as asthma nurse said he is a brittle asthmatic. 90% of the time he has a major cough and can go from controlled to not as quick as a light switch being turned on/off.

at the moment everything is under control (yay!!!), he's on seretide, ventolin and singulair. just wondering if there is anything i need to do with regards the brittle asthma or do i continue doing what we doing as its ok? nurse did say i can make an appointment if i have any concerns about his asthma, but i'm not concerned about him at the moment - just looking for info.

we have a full action plan at home and at school. at home we have a special bag (has sons name, dob and ""asthma bag"" with pic of inhalers/peak flow etc on it - i had it printed) by the door with all medicine boxes, action plan, peak flow charts etc so it can be grabbed on route out if we need to.

anyone with experience of a brittle asthmatic - i would be gratful of ideas etc.

[yaf_user681_15459]

Sorry to hear your son has a diagnosis of brittle asthma. Who diagnosed him?? I'm guessing he has a hospital team on board?? If I was you, I'd give them a call and ask for support and advice as to emergency plans etc for his treatment.

My daughter has Brittle Asthma. She is on maintenance pred daily, 4 inhalers, montelukast and nebs. We also do physio daily. I have to say that the latter seems to be working better than anything. It's a very scary place to be having a child with brittle asthma. Maddies has now resulted in Adrenal Insufficiency too so we now have a whole new ball game.

I'm so sorry but I don't have much advice to be honest. We spend our life bouncing from crisis to crisis. Like I said, all I can say is give your sons consultant a call and run things through with him/her.

Hope he stays well for as long as can be. Xxxx

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Interesting... it was my understanding that to be diagnosed as having 'brittle' asthma, you would need to have gone through the process of consultant led care from a paediatric respiratory specialist or adult respiratory specialist. It seems rather odd that the asthma nurse would be diagnosing brittle asthma.. its great to hear that you have a sound management plan in place, but if indeed the asthma is that severe, I would really be asking for hospital consultant led treatment.

Emily, sorry you're dealing with adrenal insufficiency too, that must be tough going on all of you.

Though Im obv not a child, I have very severe asthma, and am seen at a specialist respiratory hospital, on average monthly.

Lynda x

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thank you for your replies.

yes it is the asthma nurse that has said he is a brittle asthmatic following his last trip to a&e and ending up on prednisolone (spelling). the only docotors/consultants he has seen have been in a&e.

I think i will need to be making an appointment with asthma nurse to see if hes as bad as she said why hes not been referred to the hospital etc.

[Thomass_mum]

Hi

I would def ask for a referral to a specialist respiratory consultant. I can't imagine where we would be without the expertise of my sons consultant who we see every 4-8 weeks. My son hasn't been diagnosed as a brittle asthmatic despite the term being used to describe him on several times by nurses and doctors. We are now waiting for a referral to RBH so we can hopefully get more answers, as despite multiple medications his asthma is still not well controlled.

Hopefully the nurse will be able to get you that referral ASAP.

Jenny x

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I will second what others have said about being seen by a chest consultant at the hospital. After my daughters severe attack and admission she was referred to outpatients through the hospital and is seen there every few weeks. She is not a brittle asthmatic but will be under the hospital for the foreseeable future and I'd be lost without her Dr as he is fabulous with her and me!!

I am a brittle asthmatic but it took many admissions a few weeks apart and respiratory arrests and close calls to ITU before I was labeled.

I am very surprised that an asthma nurse can make such a diagnosis and think you should definately get hospital care because if your son is a brittle he will need the help and support of chest specialists.

Hope you get the help/support you will both need x