Brittle Asthma - Any advice - tips etc and General Rant!!!

Hi

My son is 2 3/4 he was diagnosed with Asthma when he was 2 1/2 - like many posters he had bronchilitus as a baby and was on inhalers for a while and then he was fine until Oct2006 - since then we've had 5 trips into hospital ranging from 1 night to 6 nights.

We've now been told by two doctors that he probably has 'brittle asthma' as he goes from being fine (we can see the GP in the morning and he'll be ok but having some Asthma symptoms to needing to be hospitalised by the evening).

We've recently written an Asthma plan with our GP (who is fantastic) but it doesn't seem to matter how early we get going with his meds on the first sign of any symptoms - once he's on the slippery slope - a trip to hospital seems to be inevitable!!!!!

He's currently on 2 puffs of Becotide morning and night and Montelukast every day and Salbutamol as needed. He also has Prednisolone as needed (much too often for my liking).

He also appears to have Hayfever (Allergic Rhinitus) which i think has triggered the last two attacks!!! The others have been triggered by viruses.

I'm not happy with the amount of Pred that he's having to take - i can't quite ascertain how much or how often he would have to have it for it to become a problem with regards to his imunity - especially in relation to Chicken Pox (which he hasn't had).

Also we're finding it really hard to keep track of all the different opinions as to how to treat him that we get from the many and varied consultants that we see!!! Every different one seems intent on changing his meds and doses even which spacer to use!!

I'm now in a constant state of worry - which doesn't help any of us - currently it seems that Asthma is ruling our lives (I appreciate that we have to try to get it under control). My little boy is really really good at taking his meds - he even takes Pred without any fuss - but we need to find a balance so that he can be the lovely lively little boy that he wants to be without having to curtail his fun too much and he needs a mum that isn't stressed out worrying.

I appreciate that it's early days and that it takes time to get everything sorted but any advice - tips etc would be greatly appreciated.

Thanks

Claire

4 Replies

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  • Hey,

    So sorry to hear things are so rough for you at the moment. Does your little boy see an asthma consultant or specialist? If he doesn't maybe it needs to be suggested to your GP? A specialist can suggest other treatment that might help you get some control back, which it sounds like you really need at the moment. Sounds as if you do anyway, if so you need to decide on one consultant you want to keep seeing and go along with what he says, makes life so much easier. Although having said that it always helps to keep your options open. Does he have some sort of nasal spray for the Rhinitis? That may help and help with the attacks. Although the side affects of pred are horrible if your sons asthma is bad I'm sure you'll agree, the asthma out weighs the side affects hands down. I'm sure some of the experienced asthmatics will be along to give you some more advice soon.

    Tks xxxx

  • Hi,

    Sorry to hear your having such a tough time with your sons asthma. I would agree with the advice given that you must stand firm and ask to see the same consultant each time. I went through a phase of having my treatment change with each hospital appointment as different Dr's have their own ways to treat things, and it became ridiculous. If you have seen a few at your local hospital think of the one you got on with best and ask to see them at your next appointment, that way you should begin to get more consistent advice and treatment.

    It may also be worth having a word at your GP's to point out firstly that as you are under the hospital you need to be referred for any long term changes of treatment and also as your sons asthma is brittle. they may also be able to make a note on his file about the need for him to be seen urgently, whenever you phone, even if he has already been seen earlier. which helps you feel less silly when you phone for the umpteeth appointment that week, or even that day.

    My GP is brill, he appreciates that I will do anything to avoid being admitted as in the last few years I have never managed to escape in under 3 weeks. however as my asthma is brittle I can get to the point of needing to be admitted from healthy in a few hours. last time, I had an appointment at 9 where the GP agreed I should start my antibiotics and upped my pred to 12 tablets, went home felt a little worse but was just about coping a few hours later, phoned again at 11.37 and they made me an appointment to have my SAT's checked 8 mins later at 11.45. my SAt's had dropped but were stable again so the GP agreed to call by on his way home to check them again.

    The other thing to remember is while it is often the case that if you are going to end up in hospital upping medication at home does not seem to stop the need to end up in hospital, it will help speed recovery even if only by a little bit. the problem with brittle asthma is it takes hold so quick the meds don't have the time to fight anything off, but the sooner they are in your system the sooner they can begin to work and the sooner you will begin to recover. On that note do you have antibiotics to keep on hand at home? I find that having a spare set to start taking before I see the GP can really help.

  • Sorry to hear that you are having such a rough time with your little one.

    I can totally sympathise - my 4 year old has also got brittle asthma and was diagnosed with asthma as a small baby (a result or prematurity and brochiolitis).

    We are on:

    Seretide 125 (2puffs twice a day)

    Salbutamol as required

    montelukast

    Cetirizine

    pred - as necessary

    She sounds similar to your little one with being fine and going downhill rapidly.

    It sounds like you are doing all the right things by having a plan, etc but I think you do need to see a consultant who is a specialist in respiritory disease to come up with a better plan for symptom management.

    It was discovered that Molly suffers a lot with dropping SATs at night due to sleep apnoea so is having surgery in a couple of weeks.

    I hope things settle for you soon.

    Annie x

  • hi there, i also understand where you are coming from, my son has brittla asthma also...he did used to be very well inbetween episodes then crash very suddenly but now, although still classed as brittle, he is symptomatic every day with a few ""attacks"" each day, which are dealt with by using nebulisers etc. he does still go downhill very quickly so from him being well(ie 2 nebs back to back and hes running about like a fly with a blue bum!!) to being completely unresponsive in 10 mins sometimes!!

    he takes a few different meds although to be fair i dont know which ones really are making a difference ( serevent, fluticasone, sodium chromoglycate inhalors and tablets, atrovent, montelukast, cetirizine, azithromycin, and alternate day pred)

    one thing i do suggest is dont wrap him in cotton wool, if he wants to run around mad, let him...hes obviously feeling well enough to do so, just give him a couple of puffs of salbutamol beforehand and encourage him to stop for a rest if he becomes breathless. he will learn to do this himself eventually.

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