Desperately seeking help for my 8 year old

Hi I am new tonight and am in desperate need of some advise and help for my 8 year old. To cut the story short she was diagnosed as an asthmatic quite early and has had years of inhalers etc, about 2 years ago our hospital consultant concluded after a chest x.ray, no wheezing and monitoring she didn't have asthma and to stop all meds (Ventolin, Clenil and MOntelukast). During the winter months she gets quite poorly with a barking sounding cough, breathlessness, struggles to breath and the only thing that will get her better is Prednisolone, now my GP said he wants her on inhalers and disagrees with the hospital. Again hospital say as she never wheezes just coughs she doesn't meet the asthma diagnosis.

Now since Sunday she has been bad with 'the cough' she will continue until she is sick and sounds and looks awful, puffy black eyes, sounds like something is stuck in her throat, no sleep as I find she's worse at night, being pulled out of school lessons and assemblies due to excess coughing.. she also drinks gallons of juice/water a day. I took her to the doctors last night who said she has an infection prescribed Prednisolone for 6 days and said she must take her inhalers.

I have tried to contact the hospital today but as yet no reply. I am at my wits end, people say it sounds like whooping cough and she's even asked me if she's going to die as it hurts. I have just taken 5 sound recordings on my phone in the last 7minutes of her coughing. My other issue is as she's not defined as an asthmatic the school wont keep inhalers for her.

Can anyone help please

thanks

16 Replies

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  • If you are breathless then you have Asthma. How can a chest x-ray show wheezing it does not show up on an x-ray. Asthma means the air ways are contracting and those are not in the lungs. Anyone struggling to breath is in need of permanent medication. Cant believe you and you daughter are having to struggle like this. She needs to be on a preventive steroid and a reliever inhaler. Go onto the NHS website and see what they have to say and also show you how to use inhalers in the correct way. Good luck.

  • Hi,

    Gosh...this is a really difficult situation. If you think that your daughter has whooping cough then surely the gp can diagnose this. I'm not sure what the treatment is for that tho? Maybe you should go to another gp and ask them outright if they think she could have whooping cough.

    I know when I have a cough its usually terrible and I cough so much that it hurts....I am asthmatic also.

    Do you have a SATs monitor to check her oxygen levels to hand and a thermometer.... If not I would get these straight away and monitor your daughter. It doesn't seem right that she should be suffering like this.

    A chest xray and lack of wheeze would certainly not exclude asthma...did they check her peak flows as well?

    I'm sure you are really frustrated but if you're not happy you need to make regular visits to your gp and I think you need a second opinion from the hospital regarding the asthma.

    My question would be that if she doesn't have asthma then what's wrong with her?

    I hope you can get some answers

    HC

  • thank you both, we have had an awful night, got to sleep about 5 and I'm due in work at 9 shes got up coughing and have more sound recordings on my phone of her at 3am, will try and upload later if I can, I'm so worn out its not fair on her, at the mo the prednisolone doesn't seem to have helped, I have nothing bar a thermometer and inhalers

  • Go to A&E if you are concerned its a serious condition and the sooner she gets the help and right medication the better.

  • This is awful! How can a hospital tell you that it's only asthma if she wheezes? I can't believe in 2016 that a hospital wouldn't know that cough is also a symptom, especially in children. My own daughter has severe asthma and she doesn't wheeze; neither do I, for that matter.

    Your GP sounds sensible at least. Ask him/her for a referral to a paediatric respiratory specialist. Your daughter needs allergy tests, lung function tests, etc to determine an exact diagnosis. Good luck.

  • Hi,

    Sometimes the worst Asthma has no wheeze and definitely coughing may be an indication of Asthma. Has the consultant seen your daughter in this condition or only when she was doing alright

    If you think she needs help do not be intimidated by the people at the hospital - take her and demand help. Come back the next night if what they give you doesn't help. Teachers can also write a note of their observations eg coughing which may make the doctors realise that your daughter is having a hell of a time. Writing down the amount of sleep your daughter has lost and her fear during this time and playing the recording of her coughing may all help. While trying their best, doctors and nurses can make mistakes and do not always have all the answers.

    Good Luck and keep strong.

  • Thanks again to everyone I have taken the day off work and am awaiting a call from the hospital she is still bad has tears coming down hwer face saying it hurts will try and upload sound recording

  • I'm so sorry to hear of your daughters ill health and how worrying it is for you. Did your GP or hospital do blood tests on your daughter? This would indicate whether she is asthmatic - iie increased levels of white blood cells indicate (eosinophilic asthma) or IgE blood tests indicates an asthmatic allergic response. Some asthmatics can have one or both of the above at varying levels.

    I deleveloped late onset adult asthma.

    I had a terrible cough and high chest infection rate. Because I wasn't wheezing my Dr said he didn't think I was asthmatic - even though he told me my blood tests indicated I was !

    Not all asthmatics wheeze - I had a cough. But later diagnosed with brittle asthma and understand how frightening this can be. When she uses ithe inhaler does this help?

    Get a second opinion.

    The Prednisolone will reduce inflammation in her lungs and help breathing and antibiotics will clear her infection but ask that she has her peak flow measured - the Dr/ asthma nurse can give you a spirometer. I didn't get this checked for ages - and my readings were very low when I eventually was given this. It can be used each day to check her readings and indicate her breathing has not deteriorated. it will also give you peace of mind. She could also be referred to an asthma nurse who can monitor your daughter's progress. Particularly when she come off the Prednisolone and antibiotics.

    I hope your daughter will feel better soon🌸

    Kind regards

    Pip

  • We ate at the assessment unit of my hospital first thoughts are whooping cough

  • Hi there, welcome to a great site where we all share what we can. Poor girl it sounds really rough for her. I had childhood asthma and it was no fun. The diagnosis of no wheezing but coughing makes me wonder if it's an allergy at work? I couldn't stop coughing events untill I gave up all dairy for example. Also if it's wintertime based mould can be an issue. We put our heating on an more allergens thrive such as in bed pillows and mattresses.

    I hope you find the cause soon for her.

    All the best,

    Gino

  • Absolutely support the posts here - no wheeze does NOT mean no asthma. My mother fought the NHS and won when I was a child fifty years ago and it seems nothing has changed. The sites that asthma suffers use are full of protest about the no wheeze issue so get angry with the people who either tell you she doesn't have asthma or "it's only asthma". You have to fight ignorance in medical circles: seems impossible but it is so. Refuse to be fobbed off. Make a fuss. Demand action. It's wearing, but sometimes it is the only way. Your child deserves to be well and you must not give up the fight.

  • I love the way you worded this. I have had asthma since I was 3, and after almost 11 years I started wheezing. Before that I was coughing and had major breathing issues. Still, people tell me "It's just asthma" like it's no big deal, but in reality, it controls my life! 

  • Hi just got home, chest x ray was normal, docs says its a viral cough and I need to let time take its time, they did take a nose swab to rule out whooping cough which I get back on Friday, they says don't use inhalers as no need

    so still at a loss :(

  • Hi

    Just seen you're post and wanted to mention that my son often presented with a whooping cough/croup cough. I was told many times he had croup because he wasn't wheezy, when I knew it wasn't because of earlier symptoms etc..

    We were even sent away from the hospital once as they said it was a viral croup only to return an hour later in a bad way and it was clear it wasn't now croup. Eventually I saw a different consultant & I told her his cough starts off as a typical (not sure there is a typical, but a typical cough for him) asthma cough but then it changes and I'm often told its croup when it isn't she said straight away without any tests that what I had described is a floppy airway & what happens is the cough changes the more he is struggling!

    I don't know if this info is of any help but I just wanted to mention it.

    It is so frustrating & upsetting to hear your child struggling and no one listens to you.

    I hope things improve for you and your daughter.

    Clare x

  • I'm so sorry for your situation and I know I'd be struggling if it were my child. It's awful that you are getting such an inconsistent response from your HCPs as that makes everything seem more difficult.

    I wanted to let you know that I have also recently been told at a new practice (after 17-odd years with an asthma diagnosis) that it can't be asthma as I rarely wheeze and have high peak flow compared to expected values. For years GPs have treated me based on my regular chest infections and increased inhalers etc to keep up. The only bright side is that I'm now on Montelukast and expecting to see a consultant (who I hope is better than yours).

    I always thought it was cough variant asthma, but now I have read about eosinophilic bronchitis I want the consultant to comment on that as a possible diagnosis for me.

    I think it is worth you demanding the tests for that (they need to check sputum for something called eosinophils I believe -- but I'm only just beginning to learn about this).

    It seems I can't post links to information on here but an internet search leads you to some medical journal publications describing the condition.

    By the way you are absolutely right to keep fighting. I know you are faced with these scary symptoms and you know that anyway, but it's so hard when HCPs are telling you something different. (My mother had undiagnosed bronchiectasis for years and would probably have stayed undiagnosed if she hadn't left the UK).

  • Hi Mommy, I am so sorry your little girl is ill and your not getting any real help. 3 of my 4 children are asthmatics and have been since they were under a year. My doctor told me they had to have symptoms for 1 year before they could be called asthmatics but I got all the inhalers etc for them. If your daughter is coughing and breathless then she obviously has a problem with her chest. If she gets better after steroids and inhalers then I would keep giving them to her until the hospital can offer you practical help. As for the school just bring in the inhaler and tell them to keep it in school. They will be scared not to in case anything happens. Your daughter will be fine because she has a very good mum. You need to make sure you get through to someone at hospital even the secretary of your doctor can pass on information. And if your daughter gets worse just take her to A & E. They will sort her out straight away and also refer her to relevant clinic. I wish you both the best of luck and health xx

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