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British Lung Foundation
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Follow up appointment seven year old son 20+ admissions repeated pneumonia

I wrote a post earlier about my sons hospital admissions, we had our follow up yesterday, I don't know anything about X-rays but his chest look terrible. We have been referred to a specialist children's hospital. The white marks on his lungs surrounding and behind heart are getting more pronounced. I asked what the consultant thought was wrong with my so. And he said looking at his X-rays he would say chronic lung disease, but my son is above average weight and height and has no clubbing so he said it wouldn't be that so could be fibrosis and he said a few other things I didn't understand... has anyone else had lung problems from such a young age? His first bronchitis was at 3 months then pneumonias and chest problems intermittent since. I'm so scared, he's an anxious child and doc said he will need a ct scan and bronchoscope which will be terrible because of his general anxiety, I'm worried how to explain things to him... thanks for listening x

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I really feel for you, the only thing I can suggest is to call the British Lung Foundation help line 0300 030555. They have trained people to give you guidance & advice working UK office hours.

You can also email them - check the address from the help button on right - copy and paste your above post to them.

All the very best to you and your son, the sooner he is diagnosed the sooner you will be able to manage whatever condition it is. The CT scan is a brilliant diagnostic tool so he may end up not needing the bronchoscope.

The ct staff are trained to deal with high anxiety too - plenty of extremely anxious adults about!

My daughter gives her daughter high levels of probiotic to help replace all the good bacteria antibiotics kill off, this enables the immune system to rebuild too. You can get them in sachets of powder that can go in their food or chewable tablets. There's also organic, live yogurt.

Thinking of you. P

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Thank you I will look into probiotics xxx

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How very worrying for you. But I am confident that all tests will be done by professionals who are fully aware of his age and problems. Specialist children's hospitals are brilliant at dealing with children. It's why they exist.

I am sure he (and you) are in safe hands. This is probably the scariest part of the process: waiting and watching and not knowing. Once things are clearer you will know what you are dealing with.

All the best and let us know what happens.

K x

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Thanks I hope so xxx

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Thinking of your son and hoping he gets all the help he needs and a diagnosis soon.

Take heart and be assured he will be well cared for. Xxx

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Thanks for your kind words xxx

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Hi Rorojackson, I believe that we have spoken before. To answer your question. I was diagnosed with extensive bronchiectasis at the age of three after pneumonias from 18 months. I am now 68. I had a good education, travelled the world, had and raised two children, went to uni in my 40s and have an active social life whilst volunteering two days at a local heritage attraction.

There is life with these conditions once you know how to manage them

The doctor/s you have been seeing seems to be way out of his depth and just throwing out things to you, both in a possible diagnosis and procedures which he imagines may need to be done. This is worrying for you whilst not helping at all.

It is good that your son is going to a specialised children's hospital. They are experts in handling children's needs and anxieties. Hopefully you will also see an expert in lung conditions who can get to the route of your son's problems and give you a proper diagnosis. Most conditions can be diagnosed by ct scan which is quick and non invasive - like an xray. Bronchoscopes are not the first line of diagnosis for symptoms like those which your son has.

Then with the help and support of the consultant there your son should get the right treatment and you will both be taught how to manage the condition. This will give you both a future. Believe me, there is one.

Once you have someone you can rely on I am sure that things will get better for you.

do let us all know how you get on.

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Thanks for your kind response and wise advice xxxx

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Hello again Rorojackson. No wonder you are so scared and worried - it must be so hard having a child who is sick and waiting for a diagnosis must be the worst. Once you have a proper diagnosis, I feel you will feel relief in a strange way, as you will then know exactly what you are dealing with and proper management can commence.

You ask if anyone has had these problems from a young age - there are some lovely members on here who do. I am one of them. I had double pneumonia and whooping cough at the age of 5 months old at the start of the NHS in 1948. In those days I was 'lucky' as we had the first paediatrician in the city (not respiratory), but a fine dedicated man who diagnosed bronchiectasis. I don't know how they diagnosed it in those days but he was right. The only treatment then was penicillin injections and physio physio physio. My poor Mum. I give you more detail than I should in your post but what I want to get across is how long ago this was and we did ok with very little. So much has changed in respiratory medicine, especially in paediatrics. I believe there will be many more improved and brilliant things happening both in tests, research and treatments in your Son'slifetime.

I am so glad the consultant you saw has referred your Son on to a sepcialist children's hospital. I would just say if there is anything you don't understand in consultation, please ask them to explain again. They don't mind at all and it is obviously best you all understand.

Although you son won't stop getting anxious, you could explain the ct scan is like a big donut. It is not enclosed. He will just have to lay on it and they will ask him to breath in and out. He will be in for a very short period of time. You might want to 'phone them when you get the appointment and explain how anxious he is (they will be so used to it, especially with children). Some of the time on a scan is taken up with them putting admin stuff in and if could be they do all that before he even climbs onto the scan. If they talk to him all the time, it will lessen his anxiety.

As for bronchoscopy, I believe they give a short term GA for children, but I am not certain about that and BLF would be able to give you correct information. You might want to explain your Son's anxiety to them too. If they don't give GA they will sedate him which will calm him and he probably won't remember anything about it.

There will probably be specialist nurses who can help you to explain. He already knows he has a poorly chest, so he needs to know the tests he is having are to help doctors to help to make him feel better.

I hope you don't have to wait too long for your appointment. You may want to write down any questions. I do this in bullet point form as it's easier to follow during a consultation. The consultant will cover some of the questions you have before you ask but you need to come out having all your quetions answered and understandidng what's happening.

Please let us know how you both get on.

Love and hugs to you both.

cx

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I'm blown away by your reply, how kind and lovely of you . You made me cry but gave me hope and wonderful advice so thanks again xxx

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You're welcome but we really didn't mean to make you cry.

Love and hugs.

cx

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This is always a worrying time for parents, but the paediatric consultants at a children's hospital are usually brilliant, both with the children and the parents. As others have said, the staff are well trained and will reassure you. I am sure you will get the correct diagnosis and help in managing it. Many blessings xx

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I do feel reassured by all of your kind responses. What an amazing group of people you all are, thank goodness for you all, I feel like a different person reading all of this , feeling hopeful instead of lost xxx

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My mother was told at 14 that her lungs were so bad she would never do anything. Well 3 children . Cycling to work. Gardening. Dancing and bellringing. A full and busy life died at the age of 76.

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