Help

Since moving house 3 months ago my 3 year old son has had multiple bouts of breathing difficulties resulting in hospital stays, steroids, inhalers.

We can't get his inhalers right and are really worried we are making him sick. The doctor tells us to increase his brown inhaler as appropriate (what does this mean?) and to increase his blue inhaler the same (!?!)

We are obviously getting it wrong and he has moved up a strength with his brown (100) and besides what are the side effects of all these steroids?

We have no experience of Asthma (though they seem to think we can treat him and know the warning signs) and at our wits end. Has anyone any practicle experience of what to look for to see what inhaler need using..... and please don't tell me each child is different :-(

29 Replies

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  • hi,

    Best thing is read up on this website it might tell you or ring the asthma nurse on here the number is on the top of this page,are you using a spacer? xxx

  • hi,

    usually when your son gets ill, and asthma symptoms become worse, the action plan you have for your son will state that you double up the dose of inhaled steroids for a certain period of time, but if you don't have an action plan, then please do get one drawn up.

  • Agreeing with Glynis please give the asthma nurse advice line a ring and they will be able to give you advice and if you need they will tell you to go back to your GP. Please read mods message as we are not allowed to give medical help only support and friendship.

  • Hi welcome to the site. I'm afraid I must echo what the others have said. We can only give support/friendship not medical advice.

    Having said that, my advice to you would be to ask your GP/practice nurse for an urgent asthma review for your son. It would be a good idea to explain your anxieties and feeling that you need much more support and help in managing your sons condition. I'm sure they will be able to help you and will be able to give specific advice and information tailored to you and your sons needs as they know you and will be able to see your son.

    Good luck with it all, don't be afraid to ask your medical team at GP for help.

    Feejay

  • thanks

    cheers all, was really just moaning, just got fed up of the doctor telling us we need to manage it better like it's our fault. i mean he was explaining about looking for the warning signs but that is pretty meaningless, arty has a constantly streaming nose, do we up the puffer then? I don't want him to have to much medicine but i don't want him to fall ill

    he is using a baby inhaler, is on the brown 100 puffer 4 times in morning and 4 times in evening and on 10 puffs every 4 hours at the moment. We started to to lower to 5 but he started to get bad again. Have been googling these steroids (the pink ones) and am worried as to whether they are really good for, he has had 9 courses in last 3 months.

    this is all quite depressing.

    another question.... is there a possibility to go private rather than nhs? has anyone done this?

  • ps

    is an action plan something the doctors should give me or is it something i am supposed to develop?

    great website by the way, am making myself feel better by reading previous posts

  • Hi sorry to hear your little one is struggling with his asthma. Is he under a hospital consultant at the moment? 4 puffs of 100mcg is quite a high dose for a 3 year old and those on that amount should be under hospital care. If he isn't he may benefit from seeing one especially as he has had numerous steroid courses recently. Ask your gp to refer you to a paediatric respiratory doctor as there are are other medications you can give children to help them control his asthma like montelucast.

    Hope this helps and good luck with your little one.

  • There's a template for an Under Fives Asthma Action Plan on the Asthma UK site - every child is different though so ask your doctor or asthma nurse to fill in the blank boxes as appropriate.

    asthma.org.uk/document.rm?i...

  • As for going private this is possible but it is usually the same consultants who work locally who see private cases.

  • Help

    Hi,

    I am sorry that your son is so ill. I cant help you with advice about medication but you say , since you moved house! Is there anything different there that could be causing these attacks?

    Hope things will get better soon.

    Carole

  • Hi,

    Sorry but I would re-iterate what I said before. I'm not sure about going private. What I would say is that you need to go back to your Doctor and keep going back until you feel you understand what you need to know and what your son needs.

    You mentioned going to the hospital quite a bit recently, if your son is seeing a paediatrician I would ring up and ask for an emergency appointment with them as well.

    Please do consult a medical practitioner as soon as possible, it does seem your son is on a lot of inhaler medication, but that is just my opinion.

  • I don't think it sounds like you are ""obviously getting it wrong"", it just sounds like you haven't really been given the information and understanding you need to be able to manage your son's asthma correctly.

    I agree with what others have said, give the AUK asthma nurses a ring, they are very helpful and a good starting point. Then perhaps go back to your GP armed with your new information and keep asking questions until you understand fully what you're doing and how to do it. If necessary, you might need to ask for referral to a paediatrician, but see how the first couple of steps go first.

    Good luck!

  • thanks

    well we spoke to the asthma nurse earlier, this was helpful. we have made big list and will bring to the doctors tomorrow, we will get in asap tomorrow morning. he is up stairs at the moment, we think he is on cusp of needing to go back to hospital, will persevere as don't want to go back in, we all find it stressful.

    should have mentioned earlier we have a hospital paedetrician for Arty (keeps telling us we should be self managing) and another who we were originally referred to. i don't really understand what we are doing wrong as in hospital he gets better much quicker (nebuliser and steroids) but at home it doesn't seem to work as well

    sorry to grumble and sound you guys out, it makes me feel better as my wife is pretty upset and we have a 6 week old baby which she needs to focus on. otherwise we just talk non stop about it.

    ps could it really be the house? what do you mean by this? i think the previous owner had a cat, could he be reacting to this?

  • Hi there, Just a quick hello.

    Things to do with the house can be a bit difficult to pinpoint. Might be due to previous owners cat but then again might not. I hope you get some better answers from the GP. Feel free to come on here and moan or just lean on our shoulders. We have many broad shoulders here on AUK.

    GrannyMo xx

  • Hi,

    Me again! As Granny says please feel free to come on here and rant or whatever.

    Just a note of caution - please don't leave it too long if you feel your son might need to go back to hospital...please don't delay because you feel you ""should"" be managing better. I do know it's terribly stressful to have a hospital visit/attendance but don't hesitate to call an ambulance or seek other medical help if you feel it is needed.

    Sounds like you are having a pretty stressful time all round at present with moving house, new baby and health worries for your son.

    I hope things improve for you all, might be worth mentioning to the doctor when you see them that the previous house owners had a cat as it may possibly be a factor, certainly worth letting the doctor know anyway.

    Take care

    Feejay

  • Hi,

    good news on the appointment, and second the idea about mentioning the cat. Difficult to control asthma, usually has an allergic factor, and I know 3 people with asthma who have an allergy to cats, so maybe, that is the factor. However, do not assume that, and let the doctors explore all options.

    Don't feel that you are at anyway to blame for not being able to control your sons asthma, as cathbear has said, you haven't been given the information in a way that you can understand. Making a list, and ask the questions and make sure you get answers that you understand is vital, and it'd the medical staff who have the responsibility to do that. Get that action plan that Ginny linked to filled out, understand and use it, but the most critical piece of advice, if ever your son is in distress, do not hesitate to call 999.

  • update

    we never made it to the doctors, took arthur into hospital early this morning...

    he has developed pneumonia which as I understand can cause bad Asthma attacks. He hasn't noticably had a cold but was diagnosed with a chest infection a week ago and as the doctor explained pneumonia develops slowly. So treat the pneumonia and asthma and hopefully once the pneumonia is better the asthma will beome less severe. I don't know what this means in the long term as he was having bad bouts of Asthma for at least the last 3/4 months.

    poor lad is currently in hospital with his mum whilst i look after our other little one. they have put him on the swine flu ward as he is running a fever and they are testing him now. this means we can't take our other son in.

    feels completely out of control. have booked visit with gp for tomorrow to fill in the plan so i can take into hospital for meeting with his consultant in the afternoon... fingers crossed...

  • wishing him a speedy recovery and lots of love to you all ,Love Glynis xxxx

  • wishing Arthur a speedy recovery and lots of love to you all ,Love Glynis xxxx

  • You poor souls. I really feel for you all. I hope all goes well and Arthur recovers quickly.

    One step at a time.....hopefully you will be able to chat to the respiratory nurse whilst in hospital which may help the overall situation for the future a little easier.

    Please do ask questions of the staff and keep on asking, if things aren't clear then let the doctors and nurses know. I have found staff to be very willing to take some extra time to explain things as hopefully this will increase the control you and your son have over the asthma so that you control it and it doesn't control you.

    Best wishes to the whole family

    Feejay

  • hope all is well

    gosh, am just reading the string of emails - you guys are really going through it.

    i'm concerned by the actions and advice of your gp. they are the prescriber - they have the responsibility to monitor your son for efficacy and safety. they should be dosing your son - not you. am i the only person in the world to have great gps?? ours immediately referred us to a respiratory nurse when it was clear that our son's asthma attack was not a one off. and they have been responsible for his dosing and drug changes ever since. yes, we regularly feedback, and they embrace the fact that we are the expert about our son - but ultimately they tell us what to do. and if i forget anything or am even just slightly unsure, then i'm straight back on the phone to them. and they want me to be on the phone to them! they encourage me to - and my son only has mild asthma symptoms at the mo. hopefully you'll get better care after you get your boy back from hospital. and if I were you - if i were even slightly unsure about my son's health and i felt as though i was banging my head against a brick wall - then i would not hesitate to go to a&e. i wouldn't bat an eyelid - i'd just keep turning up until someone listened to me. things accelerate quickly, and children do not express themselves like we do. trust your instincts.

    re the cat thing - one of my son's biggest triggers is animal dander - my son's asthma attack that landed him in hospital was due to horse hair at a friend's house.

    i really hope that things are ok for you soon. will be thinking of you. xx

  • where we are at

    Hi, hope you don't mind me keeping this updated, helps me keep it clear

    Arthur is spending his second night in hospital, on the mend am pleased to say. We have moved from the Baby inhaler to a spacer and it currently on 10 puffs x 10 breathes every 3 hours, so thats good. Saw the GP this afternoon and have an up to date plan, which talked through with the consultant at end of day rounds.

    Antibiotics for his pneumonia and still continuing with 4 puffs of the preventer day and night.

    Wheels, I read your reply interestingly. My wife and I are not confident people and the fact is we don't believe we do know our son's condition best and are desperate for someone to help us understand what we need to do. The consultant is still implying that we need to manage it better which pretty much destroys my wifes and mine connfidence that we can.

    I really appreciate the replies from people and hope it doesn't look like I am making bit deal out of this, have read some of the other stories and know I should feel pleased as it is not as bad as it could be.

    I really could never have thought that this was going to have such a big impact on our lives!

  • help

    You are wonderful parents taking the best care of your son and sibling. As you get more informed your knowledge will increase in this area of asthma. Make use of all the doctors/nurses who take care of your son. Ask questions they can provide the answers. Your Gp is there to help you too. Make use of this forum too and the asthma nurses on it. I can already notice how informed you are becoming.

    God bless you all gill

  • Adviceline

    As Gillcanlaugh has mentioned, the nurses on the Asthma UK adviceline are a good resource. If you havent spoken to them already, you can call free from a landline, Mon-Fri 9am-5pm - 0800 121 62 44. More about the adviceline here: asthma.org.uk/how_we_help/a...

    ""...You can contact the Adviceline with any concerns you may have about asthma. We receive queries about what asthma is and what causes it, triggers, symptoms, treatments and inhaler devices. We’re also often asked about allergies, exercise, diet, housing location and many other concerns that people have about asthma.

    We provide a friendly service, and can give you as much time as you need to listen to your concerns, answer your queries and offer a sympathetic ear...

  • aaargh sorry!

    Am really sorry avb123 if I offended you. I truly meant that you are the expert about your son - in everyday terms, not about his asthma. I hope I didn't sound crass or glibb? And I certainly wasn't to imply anything - I was infact hoping to inspire you to be confident about telling people that you don't feel confident about making the judgements that they're asking you to make. You and your wife have so much on and it's a really stressful time for you, I don't want to make it more difficult for you! Sorry if I miscommunicated all of this. I feel awful now.

    Wheels x

    ps - am very happy to hear that your boy's on the mend.

  • Very confusing!

    Why as parents do we always blame ourselves!!I was wondering whether your g.p surgery has a asthmas nurse? The asthmas nurse could go through it with you? Has anyone gone through your inhaler technique? The other people to phone are the asthmas nurses on this website.

    I was wondering whether there is something in the house that mightbe setting in off as you have just moved and it has got worse? The blue inhaler is the one that needs to be used if he is getting more short of breath than usual. The brown is the one that trys to keep the inflammation at bay on a daily basis. hope this helps

  • A bit of knowledge

    Hey all, much happier family today!

    Arthur is out of hospital, looking a bit skinny but looking much better. 2 days of prednisolone (am learning!) tablets left, and hopefully by end of week off the antibiotics for the pneumonia / chest infection.

    Using the information on the site (thanks!) could talk a lot more knowledgbly to the doctor, asked about asthma nurses (in southampton they only travel south of m27 - we live 1 mile the other side!). A bit of begging and offering to pay they agreed that somebody would pay us a visit. Also the consultant has advised us to go straight on the Prednisolone tablets next time, got letter for gp.

    We have plan in action - brown inhaler by the toothbrush... blue inhaler, various stashed in cars / change bags :-) APpointment with GP so they are aware / on same page on Monday.

    Wish I had spent the time researching this after first breathing problem arose.

    Fingers crossed!

  • Glad to here Arthur is home and your getting the help you need.

    love Glynis xxx

  • Hi I just wondered whether your Son has started preschool or maybe the move made him poorly. My Son was really ill for the 1st six months when we moved to our new house (been here nearly 9 years now) He was 18 months old and we had just put him in a proper bed. He was just so excited with the move and Bob the builder bedroom (would be mortified now!!)and the new paint (new build nearly killed him, remember an argument with bt trying to explain we needed phone for severe asthmatic in house and laughing when engineer said just call on a neighbour, at 5 in morning we would be popular!!)We have just redecorated wood with breath easy paint no probs now. Also starting preschool was a challenge and caused all sort of problems.

    Like you we feel very alone with Our Son's asthma. We have 2 asthmatic boys. Ben's is really mild and easy to control but get lots of chest infections and Matty who has severe and difficult to control asthma which is a real challenge. Matty had double pneumonia 18 months ago and we couldn't even stay in hospital for more than 3 days because of the superbug. We had to wake every 3 hours to give him treatment and we didn't really know what we were doing.Since this we have a respiratory specialist now but he's is 80 miles away. Like you we need an asthma nurse but we use the helpline when we feel alone, we do know how you feel. It does get easier when they are older as Matty tells us how he feels on a scale of 1 to 10 and where his lungs hurt and uses his treatment himself.

    I really hope you can get the support you need locally

    Take care

    Kate x

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