At what point do you put your foot down with dr's?

Hi everyone im new to the site and looking for advice from other parents of babies with suspected asthma. My son was diagnosed with suspected asthma in october after 3 months of repeated visits to the GPs over night time coughing and breathing difficulties. Finally one GP suggested asthma and put him on a salbutamol inhaler. In november he developed bronchiolitis and after seeing the GP on monday (who gave antibiotics) he was rushed into resus on the friday and spent the night in intensive care. The consultant said it was due to the underlying asthma why the bronchiloitis affected him so badly. Since then he had an outpatient appointment in december but he had developed another chest infection so the doctor couldn't check how his lungs were properly. He told us to increase his salbutamol to 6 puffs three times a day then bring it down over the next few days. It took us 2 more weeks to bring it down where he wasn't coughing or wheezing which lasted for a week but then he got another cold and we are back up to 6 puffs three times a day. He is really bad in the morning with lots of mucus on his chest and wheezing, using his stomach more when he is breathing and breathing fast. I took him back to the GP yesterday but he said his chest was clear and he had no wheeze so what we were doing is fine. I am just concerned that the doctor only sees him during the day when his symptoms are at their best. He doesn't see the struggle during the night and in the mroning that our son has to go through. He turned 1 last week so I was hoping the doctor might do more to control his asthma as before they said they dont prescribe steroids to under 1 year olds. We came away with the salbutamol staying at 6 puffs and this morning my son was in the same state again. At what point do you stamp your feet with the GP and stop accepting what they say? Is he right and the asthma is controlled at this dose and I am being too optimistic wanting him to be on a lower dose of the salbutamol. 1 inhaler is typically lasting between 2-3 weeks at the moment. Even the receptionist is looking at me like an over protective mum who seems to be never away from the doctors surgery. I just don't feel it is right and from reading some of the other posts on this forum it seems like it takes several visits to get anywhere. His next paediatric appointment is on the 1st March so thats another 6 weeks of struggling to get through. What treatment are other babies aged 1yr (son was literally was 1 last weekend) taking and has it helped? Any advice would be great to stop me feeling like a bad mum! :(

15 Replies

oldestnewest
  • Don't know what has happended to the reply I've already done to you.

    Read the BTS Guidelines (2008). It is the bible for ASthma care in the UK which all Dr's and Nurses should be guided by. Also do the Asthma Contol Test on this website. Also check out the NICE Guidelines for asthma which are based on BTS. Your son's inflammation of his airways needs treatong. You are doing the right thing giving him as much salbutamol as he needs (the nebulisers he will have had would have been 25 x as strong as 1 puff of his inhaler), but it only works for 4-6 hrs and as he has symptoms atleast daily and especially every night and morning he really does need the inflammation trrpeated otherwise he is susceptible to all colds/ infections inflamming his chest further and allowing further infection. See if you can see an asthma nurse at the practice instead, and go armed with the guidelines I have recommended. I am a respiratory practice nurse and I would try a steroid inhaler or Montilukast on him. Good luck!

  • Hi diyos and welcome to the forum. Your story is a familar one I'm afraid. I went through the same with my baby boy and other people on here have said the same. My son also had bronchiliotis (not sure of spelling), croup and everything else going. We were in and out of the surgery like yo-yos - I had to be a bit pushy but I really didnt care. That is what doctors are there for.

    We have often been told our chests are clear (I have asthma too) when we feel rotten. It means there is no infection which is a good thing, but the lungs are still irritated. And an infection can set in quite quickly which is why you should keep going back to the GP if things dont improve, or worsen.

    As EmilyD said, it sounds like your son needs to be on a preventer. I would go back to GP and ask about this. Also, ring up the consultant's secretary and ask if the appointment for March can be brought forward - explain he is having a hard time of it.

  • I've made him another appointment for Tuesday and Im making my husband come along this time so he can back me up with what his symptoms are like. I had a good chat with one of the asthma nurses on this site and she has said the same as you. Your responses and the chat with the nurse has really made me realise that I am going to have to go and stamp my feet and get some action this time. Fingers crossed we can get some preventative medication started.

  • you are never a bad mum taking your child to the doctors or hospital if they are ill, it only shows that you are loving and a caring parents. I have no children but i have seen my 18mth old niece fighting for breath years ago. Personally i would sit on somone until they did somthing and refuse to leave but that is me. I was very ill with a heart complaint when i was little and now suffer from asthma as well, so i know from my parents and how they would see this and i felt then as a child and now as an adult. I would be more concerned if you said you wasn't doing anything.

    good luck i hope it really works out for you and your child

  • well we took him to the gp yesterday and after good advice from people on this site we got a morning appointment so the gp could hear what he is like when his symptoms are there and the wheeze can be heard. It seemed like he still wanted to opt for the safe option and do nothing else so I told him I had been on this site and had advice from asthma and respiratory nurses. I mentioned the BTS guielines and that we wanted him to be put on stage 2 and introduce a preventer. I think he was a bit surprised with my new knowledge! my husband backed up what our son is like during the night so that helped me a lot, having someone else to support what i had been saying all along was fantastic. He has started him on a becotide 100mcg in the morning and evening and said he wants to see him in a weeks time if there was no improvement. I know from the info ive had on here that steroids might take time to start working so Im not expecting much for a while but at least we know that there is potential for improvement which is more than we had before. Thanks to everyone who has responded and helped out, especially Emily D for all the information you messaged me with. Hopefully we can start to help our son more now and he starts to get some control. I'll keep you updated how we get on. I suppose the moral of the story is to not just do what the doctor says and stick with it for you childs sake. Its also made me realise how helpful this site is, i got no counselling at all from the doctor or pharmacy on how to use the inhaler or about steroid inhalers so ive got all my information from here. now i feel more confident about what to do to help him with his medication and his asthma. xx

  • Hey that is great! Well done for what you said to GP about asthma guidelines etc. My son was on Becotide and took it morning and evening - the leaflet inside the box will tell you how to use it. Also the pharmacy label on outside of box should say how many puffs to take. Hope your son picks up soon.

  • your story is the similar to mine and my wifes!

    We have four children, three of them diagnosed with asthma from an early ages as I am.

    Our oldest children are much better now they have hit their teens - same as me when I hit mine.

    Our youngest had problems from age 6 months. Since then we have had so much different advise from different doctors consultants specialists who talk to us sometimes like we are idiots and are wholly responsible for causing our 5 yr old daughter to have to have an emergency admission because we have left it too late before asking for help. My wife and I have literally had hours of appointments where we are told to do this do that, increase the medication / decrease the medication, use the mouthpiece, don't use the mouthpiece, count to 5, count to 10, give salbutamol up to 10 times an hour as it is a small dose, then don't do that, bring her in to hospital, only to be sent away and made to feel over protective.

    The most frustrating thing is this. After being told to bring our girl in to A&E if she seems to be getting poorly, we have twice done this only to be sent away. So we have armed ourselves with a stethascope so we can hear if she has a wheeze. We have a finger oximeter to measure her heart rate and oxygen saturation levels. Using these items and taking regular observations has helped us to manage our precious daughters asthma well over the past two years and prevented emergency admissions - that is until Jan this year when a sudden onset took us and the medical professionals by surprise and our daughter had an emergency admission.

    The doctors and nurses do a fantastic and wonderful job. But they do not know your children like you do. You are right to question, disagree and ultimately ask for the treatment you feel is appropriate. You are right not to want to over medicate your child. The nature of the illness in my experience is that you cannot 2nd guess it. It does what it wants when it wants. You treat it hard and fast when needed and back off to minimal doses when not needed. I am not a doctor, or a health professional. I am a a lifelong asthma sufferer and parent of 3 asthmatic children. I am the one who wakes up every hour through the night when my daughter has a cold to check her sats and give her a puffer if needed. The professionals sometimes know the height, volume and weight of a jam jar - but not how to take the lid off....... My wife and I came away from an appointment only yesterday and were told to stop using the finger oximeter and stethascope. We will not do so because we choose to be proactive an monitor our childs health. We were told to bring her in to a&e early, although no assurance could be given that we will not be sent packing as twice before as our child didn't appear unwell enough. Yes diysos. Put your foot down politely and firmly as you are the person at the coalface dealing with this and no doctor or nurse can possibly understand your unique situation.

    sorry for the long post......

  • Brinchiolitis is horrible for. Children. It can takes several weeks for the lungs to recover and settle down. With the cough lasting long after the infection . If you are have any concerns about your child's long term management you could ask for referral to Paeditrician or respiratory specialist. In the mean time if you have any concerns about current symptoms I would recommend further medical review by gP or a and e ... That way he could be seen when the Problems are more apparent .... take. Care And trust your instincts ....

  • Brinchiolitis is horrible for. Children. It can takes several weeks for the lungs to recover and settle down. With the cough lasting long after the infection . If you are have any concerns about your child's long term management you could ask for referral to Paeditrician or respiratory specialist. In the mean time if you have any concerns about current symptoms I would recommend further medical review by gP or a and e ... That way he could be seen when the Problems are more apparent .... take. Care And trust your instincts ....

  • I know exactly how you feel because we have finally had a small victory with our GP this week after over a year of uncertainty and mixed advice.

    Our son, Leo, aged 3 yrs, has had undiagnosed asthma from 18 months (official diagnosis at 2yrs). We first suspected it after continuous bouts of bronchilitis and three hospital admissions over a period of 6 months. He also dropped 2 percentiles on the weight and height charts and is now only on the 9th for his weight! On all of these occasions our GP had sent us home saying his chest was clear! We visited the out of hours twice, both times they admitted him, the third time I took him straight to A&E and again they admitted him. He was on 4 hourly nebs each time and SATs down to 89-91.

    After the 3rd time and a 6 month course of clarythromiycin ( he had an allergic reaction to amoxicillin, went black from head to toe and swelled up like a balloon, doctors thought he had meningitis) our GP finally diagnosed him as asthmatic. In the last year alone he has had several courses of prednisolone, has 100 mg clenil preventer and of course salbutamol but no referral to a paediatrician as my GP kept saying he could handle it, not even an appointment with the asthma nurse! He also said that when stepping down the clenil that after a week of improvement we should stop giving it altogether until the next attack! He now has attacks every 6 weeks, we can almost time it, but each time our GP just tells us to step up the inhalers etc and leaves us to it. He did put him on Montelukast for a while but it had negative side effects so we stopped it as he wasn't sleeping whilst on it.

    Leo started with an asthma attack again last Sunday, up every 40 mins and inhalers not having much effect. Took him to GP on Monday to be told...you guessed it...his chest was clear! Surely GPs should know there is more to asthma than a crackling or wheezy chest? The fact that my son was recessing heavily at the ribs and throat and that his heart rate, according to the dr, was 160 bpm should have been enough for him to do something, but he simply told us to step up again and sent me on my way.

    I was seething so as soon as I got home I called Asthma UK and spoke to a brilliant asthma nurse. She told me that it was a medical emergency and to either take him to A&E or to the Asthma Nurse at our surgery. I didnt even know if there was one at our surgery as it had never been mentioned me but it is half an hour to A&E so I called the surgery and they made Leo an appointment with one of the three!!! Asthma nurses right away.

    I told her all about the GPs seeming lack of knowledge of Asthma and she checked Leo and said he needed prednisolone and nebulised him and that he needed referring without a doubt. She said if he ddnt improve afterthe first dose of preds that he would probably be admitted again.

    When we got home my husband said that out GP had phoned asking for us to go and see him! We went later that afternoon and he said that Leo's asthmas was badly controlled and he would refer him as a matter of urgency...I couldn't believe it, at last I had got through to him. He also extended his preds to a 7 day course and we have got to go back and see him tomorrow. Luckiy we managed to say out of hospital as the preds have slowly started to work, although tonight is the first night he hasn't coughed once since going to bed and it is now 10pm so fingers crossed...

    So sorry if this is a bit long winded and moaning but I feel it is so important to let people know how long it can take to get the right support and see the right people. GPS are not the be all and end all and as ours has proved, they do not know about every illness In enough detail to always make the right call.

    Good luck with your little girl, I hope you don't go through the same kind of thing.

    Rebecca

  • I know exactly how you feel because we have finally had a small victory with our GP this week after over a year of uncertainty and mixed advice.

    Our son, Leo, aged 3 yrs, has had undiagnosed asthma from 18 months (official diagnosis at 2yrs). We first suspected it after continuous bouts of bronchilitis and three hospital admissions over a period of 6 months. He also dropped 2 percentiles on the weight and height charts and is now only on the 9th for his weight! On all of these occasions our GP had sent us home saying his chest was clear! We visited the out of hours twice, both times they admitted him, the third time I took him straight to A&E and again they admitted him. He was on 4 hourly nebs each time and SATs down to 89-91.

    After the 3rd time and a 6 month course of clarythromiycin ( he had an allergic reaction to amoxicillin, went black from head to toe and swelled up like a balloon, doctors thought he had meningitis) our GP finally diagnosed him as asthmatic. In the last year alone he has had several courses of prednisolone, has 100 mg clenil preventer and of course salbutamol but no referral to a paediatrician as my GP kept saying he could handle it, not even an appointment with the asthma nurse! He also said that when stepping down the clenil that after a week of improvement we should stop giving it altogether until the next attack! He now has attacks every 6 weeks, we can almost time it, but each time our GP just tells us to step up the inhalers etc and leaves us to it. He did put him on Montelukast for a while but it had negative side effects so we stopped it as he wasn't sleeping whilst on it.

    Leo started with an asthma attack again last Sunday, up every 40 mins and inhalers not having much effect. Took him to GP on Monday to be told...you guessed it...his chest was clear! Surely GPs should know there is more to asthma than a crackling or wheezy chest? The fact that my son was recessing heavily at the ribs and throat and that his heart rate, according to the dr, was 160 bpm should have been enough for him to do something, but he simply told us to step up again and sent me on my way.

    I was seething so as soon as I got home I called Asthma UK and spoke to a brilliant asthma nurse. She told me that it was a medical emergency and to either take him to A&E or to the Asthma Nurse at our surgery. I didnt even know if there was one at our surgery as it had never been mentioned me but it is half an hour to A&E so I called the surgery and they made Leo an appointment with one of the three!!! Asthma nurses right away.

    I told her all about the GPs seeming lack of knowledge of Asthma and she checked Leo and said he needed prednisolone and nebulised him and that he needed referring without a doubt. She said if he ddnt improve afterthe first dose of preds that he would probably be admitted again.

    When we got home my husband said that out GP had phoned asking for us to go and see him! We went later that afternoon and he said that Leo's asthmas was badly controlled and he would refer him as a matter of urgency...I couldn't believe it, at last I had got through to him. He also extended his preds to a 7 day course and we have got to go back and see him tomorrow. Luckiy we managed to say out of hospital as the preds have slowly started to work, although tonight is the first night he hasn't coughed once since going to bed and it is now 10pm so fingers crossed...

    So sorry if this is a bit long winded and moaning but I feel it is so important to let people know how long it can take to get the right support and see the right people. GPS are not the be all and end all and as ours has proved, they do not know about every illness In enough detail to always make the right call.

    Good luck with your little boy, I hope you don't go through the same kind of thing.

    Rebecca

  • oh my god becx! i cant believe all what you and your family have had to go through to get your son treated. why dont doctors admit that they dont know everything and ask for help when they know a child is suffering unnecessarily. i cant believe you had 3 asthma nurses at your practice and you never were told or referred to one of them. I think there is a big lack of communication between the doctors and the nurses and its probably mre to do with pride than anything else. If only they would have some sort of system that as soon as the word asthma is recorded in someones notes (most are electrnic nowadays) that an instant alert is sent to the practice asthma nurses who can then contact the patient and make an appointment to see them. If we can have face to face conversations with people on the opposite sides of the world in an instant why can this basic communication in the same building happen when there are such high stakes involved.

    I cant believe the doctor told you to stop the clenil when he improved! that is the preventer and it is called a preventer for a reason, it prevents the asthma going out of control!!! he really should have known that and told you that your son should not stop it unless he was changing him over to something different.

    As a parent I know how scared you must have been for your son...and helpless...and feel like you as his mum should be doing more or be more insistent but at the end of the day we can only do so much and the GP's should be doing the rest. from the replies to my initial post it highlights how hard it is for asthma to be diagnosed and treated properly in babies and toddlers. OK they might grow out of it and hopefully they will but when it is happening to your child when they are so small it is a BIG deal and it is the most frightening thing in the world. Since Riley was treated as having Asthma (still no official diagnosis) it seems to have been trivialised into something not so serious because it is so common. As we have seen from the parents that have posted on here, it is serious and our GPs need to realise what effect it has on our kids lives and that of the rest of the family. Trying to hold down work, family life and sanity on next to no sleep when they are coughing and wheezing and restless night after night, never mind the stress and worry involved. I found Asthma UK to be a god send since I found it. Having other parents share what they are going through and what they have been through has really helped me and my husband deal with what has been happening with our son. The push I got from speaking to the nurses on here has helped me get the treatment I needed for Riley. We have finally had a week of sleep! After him initially getting what seemed to be worse since he was put on the Clenil Beclomethasone inhaler we have now started to see a vast improvement. He has gone from 6 puffs salbutamol 3 times a day and lots in between with wheezing coughing and no sleep to 2 puffs morning and night and the occassional 2 puffs in the daytime. The wet rattle on his chest seems to have gone and he is much more active and alert since he has been sleeping better. I am really feeling the benefit of less stress and more sleep. I need to say a massive thankyou to the people on this site who got him there and set me on the right path armed with information and guidelines for the GP to do something about it. Fingers crossed he will stay on the right tracks and things will keep improving. x

  • Hi, I know what thats like, we went through a ruff few years with my dd when she was little but then after she nearly died and another consultant started to see her things have gotten better. She is on loads of different medications now and still suffers with her asthma but its far better then when she was a baby and up to 5 years old. Its the school that we now have massive issues with and you will find that you will forever more be fighting with one person or another to get the right help. II don't mean to sound negative but I have to be honest with you about it all. You asked when you should put your foot down and I say you should do that now. Don't let them tell you that your wrong etc etc you know your child and know when something isn't right.

    The first few years are the hardest because of many things like the child doesn't yet have a great immune system and needs to build that up and then there is their teeth etc etc and all have an impact on their asthma.

    I rarely now see our GP not because my daughter is well but because if she needs anything I see them on the hospital ward and she has direct access which means we never have to go through A&E and we always see doctors that understand more then the GP.

    take care

    good luck

    lisa

  • Hi, I know what thats like, we went through a ruff few years with my dd when she was little but then after she nearly died and another consultant started to see her things have gotten better. She is on loads of different medications now and still suffers with her asthma but its far better then when she was a baby and up to 5 years old. Its the school that we now have massive issues with and you will find that you will forever more be fighting with one person or another to get the right help. II don't mean to sound negative but I have to be honest with you about it all. You asked when you should put your foot down and I say you should do that now. Don't let them tell you that your wrong etc etc you know your child and know when something isn't right.

    The first few years are the hardest because of many things like the child doesn't yet have a great immune system and needs to build that up and then there is their teeth etc etc and all have an impact on their asthma.

    I rarely now see our GP not because my daughter is well but because if she needs anything I see them on the hospital ward and she has direct access which means we never have to go through A&E and we always see doctors that understand more then the GP.

    take care

    good luck

    lisa

  • It is so annoying to hear that so many people have these ongoing battles with GPs, schools, etc It is never nice to be made to feel stupid or like you are making an unnecessary fuss.

    I totally agree that you should put your foot down with the doctors sooner rather than later because we have finally done that and already things are looking up.

    Leo saw the respiritory paediatric consultant for the first time today and we really felt that it was so worthwhile as he actually listened and understood our concerns and issues about Leo's asthma. He has now moved him from Clenil Modulite 100 twice a day to Seretide 50, two puffs twice a day and given him a stockpile of prednisolone at a higher dose to start at the very beginning of an attack, rather than after 5 days of an attack like our GP did this last time round! He will of course still have his salbutamol as well for when needs it.

    He has also given us direct access to the ward and said that he is considering giving us a nebuliser for home, although this isn't commonly done these days as he says it would make it easier to control his nighttime attacks. He said that he will not do this until he has witnessed his next attack though so next time he gets bad we have to take him straight to the ward. the reason for this he said is that people often think their child is feeling better because the nebuliser has worked but their SATs could still be low and this can lull you into a false sense of security, so he wants to monitor Leo's SATs etc during a typical attack before deciding if it is safe for us to have a nebuliser at home.

    He is also sending him for a chest xray to check there aren't any problems with the lower part of his lungs and he is seeing him again in six weeks.

    He was extremely thorough and for the first time in ages I didn't come away feeling like an idiot!

    None of this would have happened if I hadn't finally taken control and seen the asthma nurse at our surgery and complained about our doctor not doing anything to help Leo..I'm so glad I did it!

    I hope this new inhaler will work, not sure if it means he shouldn't have further asthma attacks? Seems unlikely to me but who knows?

    Wish us luck!

    Rebecca :)

You may also like...