How bad does it get?

Hi

My son has been diagnosed with Brittle Type Asthma. He has progressively got worse since he was around 7, he is 12 now. He is taking Seretetide 125 twice daily, Montelukast and ventolin inhalers as required. He also takes a range of medication for allergies/hayfever.

What I want to know is.................is this classed as severe?, Moderate? or Normal? as far as asthma goes.....I feel very confused when I go to the hospital as one doctor tells me that if Brad is night coughing then it is a symptom of an asthma attack and I should increase his inhalers and then when I see another doctor they say that the cough is a ""throat"" cough and nothing to worry about......He has had this irritating cough since 2 weeks before christmas now!!! I feel like an over anxious parent because thats how the hospital made me feel. Also Brad has regular episodes every 4 - 6 weeks where he is completely knocked off his feet, lethargic, wont speak, no energy.....They have finally done some tests to investigate this but nothing is coming back!!!! Sometimes I know Brad just feels like saying FORGET IT....and he wants to stop all of his medication....obviously I wouldnt let him do that but I can understand his frustration as I feel exactly the same.......oh boy....someone please give me hope!

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Hi my son turns thirteen next week, h he was diagnosed as a baby with chronic asthma. Reading your story, I thought he sounds just like my son , on loads of inhalers and ill every other week with some illness or other. I honestly think that asthma, over the years, causes damage and weakens the system, making it easier for bugs, of any sort.

Like you we are backwards and forwards to gps, only for them to say its not the asthma, its the throat, and hospital they take us off stuff, our asthma nurse puts us back on, so we tend to try and live with it as best we can.

My son also is fed up with all the meds, and we have to spend a lot of time encouraging him to have them when he needs them.

Sorry if this not much help, and does not make you feel much better, but your not the only one, if thats any help that lives like this.

Hope your son gets better soon and you get some answers with tests, feel free to message me any time we can compare notes, lol

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Hi there,

My son who is nearly 16 was also diagnosed as a baby (4 months old) and initially prescribed terbutaline, this was changed to ventolin and very quickly added to with becotide (now discontinued apparently) within a year he was on maximun dose of this and still with poorly controlled asthma, 4-6weekly admissions to hospital, and a mother who didn't know what to do - watching your child fight for virtually every breath is heart breaking and makes you feel very inadequate as i'm sure you know.

Anyway, serevent was added to his list of medications and he was having oral predisolone virtually one week a month to try and prevent hospital trips...

He was tested for cystic fibrosis as there was no clear trigger to his asthma, every thing set him off - running around, swimming, foods, catching a cold, going out in the cold, thunderstorms, pets, smoke. Test for CF came back negative, but he has a bizzarre list of allergies: cats, dogs, rabbits, horses, eggs, cow's milk, banana's, wasp stings (he's anaphylaxic to them, but thats another story!) some soaps but not all.... and most of the eczema creams!

By the time he went to nursery school at 4 he was on or had been on: Terbutaline, Ventolin, becotide, becloforte, flixotide, serevent plus oral steroids and too many to count creams, lotions and potions for eczema... and still had badly controlled asthma!!

We tried throphylline (he turned yellow within 5 hours of his first dose and had to be rushed to hospital and his system flushed.. or something, to this day i am still in shock at that night and can't tell you what happened other then watching my boy turn into a banana!!)

He was prescribed a combination of montelukast (which cleared up his eczema!!) ventolin, serevent and becloforte plus rescue steriods which reduced his hospital visits to every 10-12 weeks.

After 5 years of this when he was 9 he was changed from ventolin to bricanyl and serevent and becloforte to symbicort, also given turbohalers so we could scrap the dreaded spacers finally :o) In all honesty ventolin just doesn't help him, it makes him hyper, he can't sit still, he can't concentrate and he can't breathe!!... Ventolin is now reserved for use in the spacer when we need to give him 20+ puffs on the way to hospital

And now at nearly 16 he is still on max doses of bricanyl and symbicort plus montelukast and prednisolone if required but he hasn't been hospitalised for nearly 2 years (fingers crossed)

He is able to play rugby, is doing a PE gcse, go swimming and everything else... it took a long time to manage his asthma and there were times when his dr's, nurses and myself all thought he would become an asthma death statistic, he still has bad days or even weeks but i don't know how much of this is because teenagers don't seem to like being sensible and taking inhalers... and the more i ask him if he's had his inhalers the more annoyed he gets and the less likely he is to take them!! (hence he has dry, scaly lizard skin because he won't use his eczema creams)

I've been told he has chronic asthma now, but at its peak it was severe asthma.

I had great support from some amazing medical staff and i can't fault anyone i've ever seen for his asthma, but even so it has been the longest, hardest and most frustrating journey of my life and i hope now its to a greater extent over... and it only took nearly 10 years to us get here!!!

On a side note i was told that because of the high dose steroids he has been on all his life his growth had been retarded, they even did xrays and bone scans to assess the damage and it all proved that he would be markedly shorter then he should have been (can't remember the estimated measurement)... My son stands at 6ft 1in in his socks.... thank heavens he's been stunted.... LOL!!

I hope you and your medical team find the balance for your son, it can take time but if you stay strong your son will too. Good luck to you both x

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Hi my Son has brittle asthma, well it's now classed as severe and difficult, does that sound familiar? Been through the same hell as you by the sounds of it. Matty on serevent 125x3 am and pm (this has been reduced from 250x2 am and pm, montelukast 10mg and bricynal and ventolin. Matty only coughs and never wheezes and has been sent home from hospital too many times to mention. Always told it's a little cough, then an hour later at home we are fighting to keep him alive, back in the ambulance for round 2!He coughs at night when asthma is out of control.

My Son feels the same that it's all a waste of time, but we go through it for my sanity really because sometimes I feel nobody believes what we go through. I need to know what to do when it all kicks off.

Brittle asthma can be severe (depends on type and if not in control also if allergies, emotions play a part), I think it means asthma that is difficult to control (someone help me out if I'm wrong!!!)Please don't panic, it sound like you've been through the nightmare of it all already. The asthma line in red at the top is the best place for answers, they are fantastic and will help you out.

Take care

Kate x

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Thank you all for your replies......I have never really been in to joining these help groups but I have to say the help, advice and support you get from other parents on here is great.

Brad has an appointment with a Physio in the Respiratory clinic on Friday and I am going to make an appointment with the Asthma Nurse at my own GP just to voice my concerns.....not sure it will do any good!! Hopefully with the better weather coming, we will be able to get Brad's asthma under control....but then again with the warmer weather comes the hayfever which only adds to his discomfort.

I am also in the process of completing forms for DLA!! thats fun!!

Thanks again everyone for their comments.