British Lung Foundation
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Looking for guidance

I am new to this site and hoping to find some help and advice on how to give my son the best future possible in his circumstances.

He is 13 and has had constant mucus production since he was 7 which became increasingly bad.

At present he is undergoing tests to identify one of 3 possible diagnoses....top of the list is Bronchiectasis followed by Cystic Fibrosis (despite all tests for this so far have come back normal) and finally an immunodeficiency.

He is booked in for a CT scan this week which the doctor says will show a lot more detail than the previous x-ray.

I find it very difficult seeing my son so constantly breathless and lie in bed hearing him cough over and over......

I don’t know how difficult it is to live with this condition.

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Hi Chimai - welcome to our friendly site. A CT scan shiould show up cystic fibrosis or bronchiectasis if they are present but guess the immunodeficiency might need further tests. I have bronchiectasis and asthma but the impact varies a great deal from person to person. Please let us know the outcome and I hope your son will get some reieif from coughing and mucous production as they are so tiring.

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Thankyou for your response. Just chatting on here makes me feel less isolated in this.

They’re going to do more bloods to check his responses to immunisations.

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Just want to welcome you to this great forum and to wish your son well. Do let us know how things go please. Xxxxx

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Thankyou

I will x

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A big Welcome to you,Chimai - its great that you have found us!! A friendly, mixture of experience, illnesses and advice which is genuine- all now at the touch of a few buttons. (U can see I'm of a certain age and still wrestling with the computer /internet.)

Feeling isolated is just the worst feeling and that is why so many of our members originally joined just like you,to have a connection with folk who understand just how hard life can sometimes be. However,you will read that the very same,sometimes very Ill people will answer any questions to try and help,advise or comfort you. Remembering all the time that we dont have "proper" medical answers etc but just a tale to tell of what worked for us and maybe why. The BLF has a superb free helpline so you should call them during office hours. There are nurses who van advise you,plus support is available for financial worries etc etc. Deffo worth a call. Do let us know how things are going for you and your son.

Kind regards.

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Thankyou for your kind words. X

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I know how worrying it so to see your children suffer and how helpless you can feel. But this site is great for support 😀 I think the main thing is once you get a diagnosis to be matched up with a good consultant who specialises in that condition. And that may mean you being very proactive and doing lots of chasing etc. Just a run of the mill paediatrician isn't going to cut it, it needs to be one who fully knows about the exact condition. And then they'll be a wealth of advice to help your son clear the mucus and breathe well.

Also, you may want to suggest they do a CT of the sinuses to see if there's blcokages and mucus there too as if so it can drip into the lungs and cause coughs etc.

Good luck and fingers crossed things get moving for you both xx

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Hi Shancock

It’s funny you should say that.

My son has always been diagnosed with uncontrolled asthma up until he was referred to ENT due to the constant runny nose. He went into surgery last November to have his nose reset and that’s when everything changed....

They found polyps in his sinus cavity plus the anaesthetist struggled due to the quantity of gunk in his lungs..they ended up draining his chest.

Since then he has had 4 courses of antibiotics and 2 of steroids. These seem to hold things at bay whilst he’s on them but within a few days of each course finishing then the mucus production cough and slight temperature come back.

They’ve grown cultures from mucus samples.

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Oh dear it's a shame it didn't totally work. I've recently had a Septoplasty and drainage of sinuses due to chronic infection, it's going well so far. It's really a question of knowing whether the lungs are adding to the mucus or vice versa! A CT scan of both would help I'm sure. Also does he cough after eating? If so he could perhaps have some reflux which causes mucus production too and can easily leak into lungs.

He definitely needs a total check from probably lung specialist and ENT in the first instance then possibly a gastro-doctor too?

But I think it's really a matter of you having to push for these things and not take no for an answer I'm afraid. My son saw a paediatrician for his epilepsy and the guy was lovely but not specialised in that area so really just kept trying meds, when after a year we saw a neurologist she immediately saw the video footage I'd taken and knew exactly what seizures they were and what medication he needed and he's been very well ever since. It's all about seeing the right people.

Good luck, it can be a battle but that's what us mums are there for!

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We’ve got an appointment with ENT on Thursday followed by a CT scan. Unfortunately his follow up appointment with the paediatric chest specialist isn’t until 16th March.

He doesn’t really cough any extra after eating, however he was diagnosed as having IBS when he was 10, bought on by stress during his SAT’s. He would just randomly wake in the night and be sick. That hasn’t happened for a year or so now though although he does get tummy pains sometimes still.

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Hopefully a sinus CT and a chest CT will give them some direction. Good suggestion for an allergy test too.

And I would tell the school you not want him out for PE till it warms up or at least that he wears a tracksuit. Chesty and cold do not mix well and make the cough worse.

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Thanks for all your advice.

I’v Already told the school and he’s on indoor sports only.

He was allergy tested 3 years ago and all were clear but the chest specialist said at our last appointment that they aren’t always accurate.

I’ll let you know how the tests go.

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I do sympathise, Chimai, one of my daughters coughed all through her childhood and she had eczema too, but it was not until much later that she was tested for any allergies ......she was found to be allergic to pets, house dust, grass, some nuts, and other pollen .

Has your son had any allergy tests?

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Hi Chimai and a very warm welcome to you, although I am so sorry to hear of your dear son’s health issues.

It does sound as if, although not before time, they are now being proactive and getting the relevant tests and investigations going.

The ct scan will give them the information and they will then be able to confirm if he has broncheictasis. It is good that they have referred him to an immunologist and I assume the cf test was a sweat test.

On a reassuring note if he is diagnosed with bronchiectasis then they can start to give your son a proper treatment plan and refer him to a respiratory physiotherapist to teach you all how to do lung clearance.

Also tests etc are much less intrusive than they were when I was young. Had bronchiectasis from babyhood in 1948. My poor Mum - I do feel for you. In those days we had penicillin injections and physio and more physio. There is no much more available to help reduce those non stop nightly coughing - proper lung clearance being the best thing we can do. There are more ways for a 10 year old to help with lung clearance. If he hasn’t got an active exacerbation then allow him to run and take part in lots of sport. Don’t clip his wings and he will fly.

There is a recognition that bronchiectasis is more widespread than they once thought and there is renewed interest in research and trials for new drugs. Treatment will be much improved in your Son’s lifetime.

Please let us know the results Chimai.

Love cx

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Thankyou so much for your reply!

You mention about sports....does the cold weather affect his ability to fight infections? It’s football all term and it’s just so cold in shorts...it does worry me xx

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It might be something you might want to talk to your GP or BLF about. BLF are very hepful with regard to paediatric lung conditions along with adult respiratory condition. It may depend on what the results of the ct scan is and how the cold effects his lungs and breathing but if he can run around it might be a balance and more beneficial. I am not qualified to advise on this but for peace of mind I would check it out.

Love cx

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Thankyou sooo much.

I already feel so much better than I did just being able to talk to people who understand!

Xx

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Hello Chimai .

I have nothing to add to the wonderful comments already published above, but want to welcome you to the forum, and say you are not alone. We are so pleased to have you here.

Sending a big hug to you.

Cas xx 🌹

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It is so sad when we see children suffering in this way.

I know a number of people with bronchiectasis, including myself, who lived in a dry climate with very little or no problems with their lungs. All the problems started when they returned to the damp, wet weather here.

So if it is on the cards that you could relocate to a dry climate, take it with both hands. My warmest and best wishes to you and your son.

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Hello and welcome to the group. My mother had uncontrolled asthma and so do.i you have to reassure your son as much as possible. He will feel your concern and fear. Try to do some relaxation together. Exer ise is good for your sons condition even if he cant do as much as other children. Talk to your doctor or specialist about diet. I find that fish will make me chesty. Your son mst have a food intollerance which can be difficult to identify. I hope you are able to help your son improve.

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Hi hopetorun

Thanks so much for taking the time to reply to my post.

My son has been tested for all airborne allergies but never food allergies.

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After CT scan being cancelled by the Beast from the East!! we were given a slot on Sunday. We had the results today.

Ed has Bronchiectasis throughout both his lungs and is being admitted on Monday for a 3 week course of IV antibiotics alongside physio therapy training. He’s going to have bloods to test genetics for Cystic Fibrosis as despite his sweat test and pancreatic test being clear they still haven’t ruled it out.

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Hi Chimai, I am 36 and was diagnosed with moderately severe Bronchiectasis when I was 31 and after 20 years of reasonably successful semi professional sport. Im new to this site and consequently this is my first post. I was struck by your post much as much of it resonates with me. If he is ultimately diagnosed with Bronchiectasis then let me assure you that he can live a normal life. Im a partner in a law firm often working long hours (my choice) I have two little children and use the gym fairly regularly. Save for the regular cough people don't know I have Bronchiectasis unless I tell them so. A normal life is absolutely possible. If anything it has taught me my own mortality and that I need to live life the way I want to.

Since diagnosis, when I was in a fairly poor state physically, and if I'm honest with myself mentally I am now in a stable place and have learnt to manage my condition and symptoms and get on with enjoying life. Yes, I have bad days but generally there are more good than bad and the bad days can be got through with coffee, and antibiotics if necessary.

Even if he hasn't been diagnosed I would suggest he uses mucus clearing equipment as that will immediately make him breath better. I use a Pari Boy Mini nebuliser (its small and discrete) and I watch TV, work or read a book whilst using it. I also use an acapella. The combination seems to work for me and I bring up a lot of mucus at times.

Tell him not to hide away or feel conscious about his cough.....there are lots of us exactly like him. I can send you site details of the company i use for my nebuliser.

If there is anything else I can do then please let me know.

Nick

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Dear Nick

Thankyou so much for taking the time to reply to my post.

My son was discharged from hospital 2 weeks ago now after finishing quite an intense regime of antibiotics nebulisers 4 times a day with the acapella. It was like a new lease of life!!!

Unfortunately within 3 days of stopping the antibiotics (not the nebs and acapella) he started burning up again and became very poorly again very quickly. We sent a sputum sample for testing and he was already reinfected.

He is now one week into another two week course of antibiotics to which he responds very quickly.

Speaking to his specialist yesterday it seems that his immune system is very low and the results to his immune response tests were also very low.

I think from what was discussed that it may be a sign of a immunodeficiency disorder.

I have been trying very hard to stay positive but it just seems to be a journey of negatives. :-(

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