Why does no one know whats wrong?

Sorry but I feel a rant coming on. I have 3 boys all with asthma. The eldest, 11, is luckily very mild. Then I have twin boys who are almost 4 who have a number of admissions between them, along with various allergies. They were also prem.

Oliver, one of my twins, had a very bad attack August of last year but had no hospital admissions since them till 2 weeks ago.

We went to the gp on the friday morning who said they were both starting chest infections and prescribed amoxicyllin. By lunchtime I was at A & E with Oliver. Sats 95%, so given neb. no improvement so given prednisolone plus more nebs, plus oxygen. Kept in overnight and released next day. Childrens ward said he did not have a chest infection but to carry on with anti b's as he had to finish the course.

Finished the course last sat, after a good week. Sunday we were at a & e as 10 puffs were only lasting 2 hours. Sats were 100% but wheezy so said to give 10 puffs ventolin 4 hourly (said it wasn't lasting but no other advice). Back to GP tues am, told him was now giving ventolin 2 hourly. Finds he has a significant chest infection and prescribes new anti b's.

Wednesday shows massive improvement. Friday back to GP as cough awful again, who says chest infection is clearing and cough should clear up in a few days.

Fast forward to today. He is in the exact same condition as he has been in every time I have taken him to gp - coughing continually, noisy breathing, but no difficulty and good colour. Chest infection has gone but asthma is bad. so prescibed pred. but only 2.5 mg 1 tablet 3 times a day, but wouldn't let him have soluble so i'm trying to get a 3 yr old to swallow a tablet. If he worsens I am told to go straight to casualty, or if no improvement by friday to go back to gp.

we have a wonderful asthma nurse who I can phone but I can't get hold of her today so am hoping she isn't off for half term. Our consultant appt has been brought froward but is still 2 weeks away. Am now at the point where I feel we are being fobbed off and we just want someone to do something! We still don't know if the hospital missed the chest infection, or if this has all been caused by a chest infection which is now affecting the asthma, or if it has been his asthma all along.

Whichever way he can't go on like this. In between inhalers he's fine, but that period is relatively short some days, but yesterday he was fine most of the day. It doesn't seem to make sense. Plus to top it all he's almost at the end of a 10 day course of anti b's which have made him feel dreadful.

I'm hoping our saint of an asthma nurse will pick up my message tomorrow. Sorry this is long but does anyone else ever feel like they are banging their head up against a brick wall just to get someone to listen and do something?

5 Replies

  • Ended up in a & e at 5 am today. He had a neb and they gave him more pred, soluble this time and a larger dose. That was all over 4 hours ago and ok at the mo.

    The asthma nurse is on annual leave til next weds :( so have to go it alone til then!

  • i went through the same think with my (then)2 yr old until i changed gps.it is hard just hang in there it will get better soon.

  • Hi we have been through the same problem for years with my son's asthma and especially the last week.

    Matty's peak flow started dropping and he has had severe chest pain, hes been off school two weeks and a really high temperature. Chest is always lovely and clear!.One doc we saw said his peak flow is higher than it should be for his age and hes fine, nothing wrong, can't be asthmatic.Matty is athletic when well and lung function is 30% higher than a normal 8 year old but it drops quickly and doesn't come back up for months.grrrrrr. He had shooting pains down into his lungs, we still don't know what happened.

    Matty was ill in for three months last year and in January called out an ambulance as his breathing went seriously weird and nebuliser didn't touch it. Paramedic heard moist sounds on his lungs and rushed us into hospital, when we got there it took hours to see a doc and she said all well you can go home now.Luckily our magic letter from the consultant did the trick.it took 18 hours to get a chest xray then all hell let loose as they realised he had double pnuemonia and was going downhill fast.

    If you feel at all worried either go to a + e or call an ambulance, trust your instincts as you will find they are probably right, you know your boys better than anyone. It is so bloody frustrating I know, also asthma uk advice line is fab, I've called in tears loads of times when I'm on my own and just feel so low that I can't bother a doc again, I lose my confidence and feel the docs are right, thank God I come to my senses quickly with the help of a phone call. We are seeing the consultant next week so may have some answers. I hope you get answers soon, chest infections do get missed as we found out.

    Matty is nearly 9 and has the pink fizzy steroids as his throat hurts too much from coughing to take the ones you have to swallow,also he has 8 a day (would take too long). We found our local doc would give Matty 4 tabs 20mg a day where we have been told it's not enough, they often need a good dose to work. When he's really bad consultant puts him on 12 60mg a day. Maybe worth asking asthma uk, they tell you the amount needed for age and weight, I then go back to our doc and tell him whats been recommended and he usually listens

    Good luck

    take care

  • Thanks that is really helpful. Our Gps are usually fantastic but i'm starting to realise they're not at all clued up on asthma. They do the same checks every time and unless they're have a full blown text book asthma attack right there in the surgery, we get sent awaty. If its that they are just going downhill, they don't do anything.

    Last year Oliver has a full cardiac / respiratory which was horrific so we are now determined that we will get treatment as soon as things start, we completely missed all the signs as we had no idea what we were looking for. Thankfully, I had just arrived at the hospital. But we follow the advice about if they start to need more ventolin, or more coughing and no one listens.

    When we were sent home yesterday from a & e after the nebuliser it was along the lines of go home and get on with it (in a nice way).

    I now feel I need to know exactly what should be happening in each scenario so that I can almost tell the GP what to do.

    I will definetely phone the asthma line if I need help again before our asthma nurse returns. I have looked up the dose of prednisoline the GP gave and its less than would be given to a 1 year old.

    Thanks again

    Take care

  • .. yes we are always told chest is clear too, so must be viral. I'm now starting to realise this is probably wrong and the boys have been battling their asthma all along.

    I think it's a really bad week at the moment for it. Lets hope they all pick up soon x

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