a child with Bronchiectasis

Hello firefly

I am a patient with bronchiectasis not a mum but I just wanted to send you my support. I have had the complaint since I was about 13 months old and I am now 61 so I have a long life-time's experience.

Your daughter is a brave little soul with all that she has to put up with. And it must be very hard for you, as her mum to watch her as she struggles.

I can't offer you any practical help because it sounds as if she is getting excellent care. The only comfort I can offer you is that the drug treatment she is getting was not always available. When I was a child there was no drug help at all, except for antibiotics when you had an infection. The main treatment was an operation to remove the affected part of the lung. It was very primitive and didn't always solve the problem.

The side effects of her drugs will make her feel ghastly. I have my off days with my drug treatment and it must be so much worse for a little one.

Just take my loving thoughts and I hope that you and she will continue in your brave journey and that her health, like mine, will improve as she gets older.

Lyn

I too do not have a child with Bronchiectasis. I have had it for 4 years and Augmentin is now part of my diet. 2 weeks on and 2 weeks off.

I know how distressing it is to watch your little girl go through all this and I send lots of love to you both.

As Operalyn said, she is getting the care she needs and there is research going on to find a better way of helping Bronch patients.

Hang on in there firefly.

Warmest regards

Tessa

I also have a child with the disease. Diagnosed 3 years ago. She is now 11. She had a partial lobectomy - upper left lobe last year. We thought this would improve her condition considerably but this has not been the case. She has had an infection since the beginning of this year which no amount of antibiotics, physio, nebs etc can get rid of. She has been also coughing up blood periodically which is always very alarming. We are also at our wits end watching her suffer. She will be starting senior school in September which is stressful for any child but an extra load for our daughter as she is worried about what school she will miss if she has to go into hospital again.

Hi I'm new,

I have a 4 yr old daughter with bronchiectasis, she has been very unwell the past 2 years with constant chest infections & pneumonia twice , I honestly thought that her life would be spent in hospital every other week......until she was referred to the royal brompton hospital in London for investigation.....while all these test were taking place she was put on a prophylactic antibiotic called AZITHROMYCEN I can honestly say she has never ever been so well, in the 4 months she has been on it she has only had 1 chest infection and it was very mild, I cant tell you how happy I am & how happy and healthy she looks now

I was told last week that my daughter has a very rare gene mutation for cystic fibrosis, she had had 4 negative sweat tests in the past & I was told there was no way she could have cystic fibrosis...but professor bush from the royal brompton decided to peruse it none the less (thank god) and after the genetic blood tests came back normal he sent for extended genectic testing & thats where the genes were found!!!

At first my daughter was on 5 mls of azithromycen on a mon, tues & wed every other week but towards the end of the 2 weeks she was slipping so they changed it to mon, wed, fri every week & its working a treat

strangely I my self suffer from severe geographic tounge, It was most bizzare when the dr told me what it was 3 years ago as id never heard of it & couldnt find any reason anywhere for why people get it but I know its more common in kids.....when i get it (every month) i get very bad headaches and feel very tired just before it comes but my dr just laughed at me and told me there were no syptoms to it!!

xxx

Hi, I have a three yr old granddaughter who has been diagnosed with Bronchiectasis. This has resulted in hher spending more time in hospital than at home having to have I V antibiotic treatment. I understand that it is more common in adults than children. Our concern of another factor does not seem to be common with most sufferers as our little one also has episodes where she goes into respitory arrest and these come in batches and Doctors cant seem to find a connection between the two. has anyone else came across this? any suggestions or advice will be truelly welcome.

It is such a pity that there really is little help for bronchiectasis sufferers other than antibiotics and puffers. I have not found puffers particularly helpful in my case but singulair has transformed my life. Which is strange because it is an asthma treatment and I am not diagnosed as asthmatic. I think the two (asthma and bronchietasis) often run together.

Bronchiectasis used to be much more common than it is because it often develops as a result of another condition such a measles or whooping cough. When these diseases became rarer so the levels of bronchiectasis fell - or so they tell me.

The side effects like geographic tongue are quite common - I have them - its because of the drugs and puffers I think but I have never had that confirmed. I know that not rinsing your mouth out properly after using your inhaler can give you oral thrush - as can long-term antibiotics.

I spent half my life in hospital as a child and you should see me now! I am an old biddy who lives a very full life and has been married for 40 years and worked since I was 16 (admittedly mostly part-time). I wish that for your lovely grandchildren and children and more. I don't know of any miracles but there is so much more help and support than when I was a child with bronchiectasis. It is so awful for you to watch them suffer and I hope that new cures and treatments are on their way. Keep them warm and rested and make sure they do their physio (postural drainage) is my best advice.

My very best wishes to you anne marie and all the others who love their little ones suffering from this filthy complaint.

Hi, I am 34 years old have had asthma since very young, lots of pneumonia through childhood, chest infections galore. Then in 2003 I had a Spontaneous Pneumothorax followed by Vats Pleuradesis operation, followed by another Pneumothorax which needed drainage.

Since having my 3 children I again have had chest infection after chest infection.. quite a few times having to be in hospital for a while, but now after having a High Res CT scan have since been diagnosed with Bronchiectasis but also I have got lots of cysts on my lungs!

This is a new diagnosis & unsure on what is going to happen now. My consultant has begun the process of being referred to the Royal Brompton Hospital in London.

Has anyone had similar problems & if so what was the next step after being refered?

Any medication that people have found that works really well to control syptoms?

Does anyone know if Bronchiectasis is hereditory? Im worried my children will end up having to go through this. Does anyone else have Cysts on their lungs? What does this mean? Can they pop?

Many thanks. C.

Hi C. My 4 yr old granddaughter has Bronchiectasis and is on Azithromycin and singular, this along with Physiotherapy. Twice daily is all the treatment she receives at present. She has now had a Porta-cathl put in for intravenous antibiotics when she is having problems. She also goes into Respitory arrest as a result of the coughing fits she goes into but they can't pinpoint why this happens, on her scan that was done there was a cyst but we were told that was not too much of a concern to them. Unfortunately she spends more time in hospital than she does at home and has to be kept back from starting school. This year. I hope you get some respite and if you hear of anything other than the treatment above please pass it on. Thanks x

The trouble with bronchiectasis is that it is damage to the lungs so there are not many drugs available to control the symptoms - the best treatment is the physio and the puffers. Antibiotics to cure the infections - all the things you know about.

The Brompton is THE place to go - the expertise there is second to none. They will advise on the best treatments and the lifestyle that will help. I have had to do physiotherapy every day of my life to keep the sputum at a good level and to help with breathing. My mother helped with this all through my childhood. I am much better now I am old! And I find singulair helps too. I hope sincerely that new treatments will be found for these little people. Rest and good diets help too of course. Keep your spirits up and keep their's up too if you can. And if I could add a little teeny bit of extra advice - when they are well, make sure they have a normal life and don't wrap them up in cotton wool too much. When they are poorly, then is the time to lay on the TLC. My very best to you both and to the children too.