How on earth do they have ds marked down as brittle asthma when he's never a consultant?

[Morrigu]

Ds was dx with asthma two years ago after persistent coughs from birth, leading to hospital admissions as he gets older because of low oxygen, infections etc.

He hasn't been well for months now getting one cough after another and ending on up pred, antibs and nebs. From last night he went downhill and my local surgery took a look at him this morning and told me to go to hospital for further monitoring. Reading the sheet the gp gave me I see they have him marked down as brittle asthma.

I shouldn't have googled really as it's terrified me but also some things don't add up. Although ds can go down-hill fast it's not like it happens in a matter of minutes. I'm confused as he's never seen a respiratory consultant, has been referred to one after today, so I don't know where they got that diagnosis from. I do know his inhalors don't work very well on him and the doctor has recommended Singulair. Does it really help with managing asthma? I am getting worried as they older he gets the worse he seems to get. Sorry a bit of a muddle but anyone experience?

Should be seen a consultant? Running on no sleep.

Thanks Hothead was it a consultant that first diagnosed your ds?Should know better not to consult Dr Google :) He's six now. Worries me sick tbh as the reliever doesn't seem to do much good when he's bad. Good to hear the montelukast worked well for him.

Starting to pant and cough badly again tonight as I think the back to back nebs he had at the hospital earlier have worn off :( May be another hospital run tonight.

What inhalers is he on?

DS is a brittle asthmatic, under consultant care who he sees every 3 months but he diagnosis came as no suprise to us because his asthma is pretty much impossible to control even on very high doses of drugs he still has daily problems.

I have found gps are pretty rubbish at asthma so I would be asking for a refferal to help find the drugs which will control him

Who has seen him on consultant ward round during his admissions? It's likely that he has seen a consultant but you may want to ask about ongoing follow up.

He should have been seen by a consultant at some point if he's been admitted to hospital and they may have sent that on some discharge paperwork to your GP? That's all I can think, do you have regular appointments with an asthma nurse? If you do get admitted again you should try and make sure there is some regular contact in place with a health proffesional for seeing your son when he's well, checking peak flows etc.

He is only on the blue and brown inhaler Sirzy, although ends up on pred quite a lot over the winter months. Ds has been sent for a referral now as the A&E doc agreed with me yesterday they obviously aren't enough for him. He has scared his teacher in recent weeks too when his reliever doesn't appear to be working, cue panicked phone calls to me (I luckily live just round the corner). He gave the reason ds has obviously been missed in the loop as the hospital we attend when he's bad doesn't do the area where live so he has now made a referral to the other hospital that covers our area, that I hate.

I never even thought about seeing the consultant with the hospital rounds. Duh!

They have sent discharge papers to the gp as he attended the asthma nurse for the first time last year and she mentioned it. He has another appointment with her in about a week. He really can't do peak flows. They've tried with him and he doesn't get it.

I suppose I'm actually hoping it isn't brittle asthma. I feel a bit stupid after seeing him sick for so many years I haven't got how dangerous asthma is, brittle or not. Does that sound ridiculous? I've only really thought it would effect people when they get a cold or something and a hospital stay will sort it out. In my defence none of my family have it, although we do suffer allergies and hayfever and ds has had a lot of on-going issues from birth that I've been more worried about. Glad his asthma review is so soon as I have a lot of questions.

Thank for the replies to a clueless poster.

Don't feel too scared about a diagnosis. It can be a really positive step to getting onto the right treatment to keep everything more stable. Try not to google as it tends to be the more extreme stories that end up on the internet. Asthma uk has a good website if you can't bear not to use the internet for info. Definitely write down your questions for your consultant appointment as then you can be sure that you've asked about everything you need to know at the moment. Hope everything turns out well.

Thank you Iamrandom. I am trying to look at it that way as these past few months have been awful and it's very obvious his asthma is not in control. I'd looked at that website earlier and ordered a booklet, downloaded action plan etc as I now plan to be more proactive, informing myself so I can keep the likes of his school up-to-date.

Do you know if they do allergy testing with the consultant? Doctors keep asking me about pets and we do have a dog but we've had her for years. I've noticed this year she is shedding far more than she used to which makes me wonder.

Yes Hothead the doc spoke very highly of that med so fingers crossed. Thanks that makes me feel a bit better that I wasn't the only one about not realising how bad things can get. That sounds very scary having to call an ambulance and I'm glad your ds is ok. Was feeling guilty at how calm I've always been about him being in hospital but then with him being a very tiny prem baby I was used to monitors bleeping madly. Maybe it's worse now as I'll be stressing finally realising how serious it can be.

I've been thinking a lot about his triggers today and realising I should be giving him blasts of ventolin before the likes of cold rather than after when he starts to cough/wheeze (I do make him wear a scarf over his nose and mouth) and exercise after reading the asthma uk website. I feel a bit let down by the asthma clinic at the gps for not informing me of this sort of thing or mentioning an action plan tbh. Not much point in getting annoyed about it however and thinking forward I'll be the one saying to them now I know more.

I'm very allergic to cats myself and had slight allergic reaction to my dog when I first got her but then I think exposure kicked in.

I have really appreciated all the comments so thanks.

He does sound quite brittle. It sounds like they are on the ball with it.

There are different types of brittle asthma so not all mean fast deterioration.

Really giraffe as everything I've read keeps saying brittle is sudden onset deterioration, is that not in all cases? I'm all new to there being different types of asthma so don't have a clue. I know docs know best and I'm not trying to diagnose him myself but thinking the more I know, the more I will be able to ask about come his consultant appointment.

No, there are so many different types and forms of asthma it is very confusing. nettosuperstar on here and I both have brittle asthma and have very different types. (search her asthma posts if you like she won;t mind) She is bad all the time and tends to gradually go down hill to become worse. I tend to go from being fine to bad very quickly.

We are both seen at the difficult/brittle asthma clinic at same hosp and same consultant.

It is good in a way that they have identified he needs extra help when he presents with asthma. :)

People use brittle to mean different things too.

Happy to help with anything if I can. I got diagnosed 3 years ago from having never ever had asthma before! It has just got worse and worse, now on a drug for COPD - although I do not have COPD and that seems to be helping. Steep learning curve!

Oh and I see you have been on asthma uk - did you know you can order lots of great stuff for free on there? Lots of specific resources for kids - stickery type things I think. They ask for a donation if you can but it is all there and avaliable. I have a wee card with details on it and have used it before at hosp when struggling to talk.

Cheers giraffes I did have a quick nosey at asthma and superstar history, even though I hate doing that cos I always feel like I'm looking through a diary or something :) Interesting how symptoms are different and now I am thinking that yes he's bad near enough consistently, but only through the winter, with the odd good days, possibly a week in-between where the only occasional cough but when he goes downhill it's quick but hard to distinguish because he has been sick a lot.

I did order loads of stuff from the asthma uk and downloaded as I am now on a mission to educate myself and ds's caregivers.

Bloody hell that is freaky giraffe I hope your meds work out for you and how scary for you developing a serious asthma through no reason. Ta muchly for the offer and I may pm one day after the docs if you don't mind?

Re allergy testing, the consultant will ask about any allergy symptoms. Unsure about exactly when the decision is made to do allergy testing as I don't work directly in asthma but with a different respiratory condition. I suspect that it will vary according to the history the consultant gets from you and how well ds responds to changes to treatment. The nhs website has a section on allergy testing which describes the different tests.

Glad you've also got responses from people who know about asthma first hand. Hope you feel more in control with the info you've found.

I honestly don't think he has any allergy symptoms Iamrandom . I'm clutching at straws really, but that's going by myself and the different symptoms I have to my allergens.

Thanks I do feel much more in control now and more proactive about it all.