Advice please on cf

[Becki2271]

Hi, I'm new to this just joined tonight. Wondering if anyone can give any advice ect. I have a 15 month old son who was born with pneumonia and was ventalated at birth, since then he's been suffering with recurrent chest infections, wheeze. Had a few hospital admissions and required oxygen. He suffers from a wet cough and can hear and feel mucas all the time it never leaves him. This past week the hospital have psuedomonas in his sputem sample and he's being tested in a week for cf via the sweat test. Really nervous and worried by this would just like to see if anyone has had or having similar experience ect. Thanks in advance x

[cofdrop-UK]

Dear Becki

A very warm welcome to you, although I am so sorry to hear of your little ones health issues. It must be unbelievably difficult for you both.

As an aside I would just tell you that I empathise with you both, as I was diagnosed with bronchiectasis following double pneumonia and whooping cough as a 5 month old baby and my dear late Mum was in the position you are and I feel deeply for you both.

I believe now babies are tested for cf when they have the heel prick test and I therefore feel your doctors are being very proctive in testing your little one with a sweat test, which may be something to do with finding the bug pseudomonas in your Son's sputum.

They didn't have sweat tests when I was little but I did have a sweat test when I was 60 following a consultation with my present consultant, who is a respiratory consultant with a special interest in cf/bronchiectasis.

I did find it upsetting but only because the unit where I had it was kitted out for babies and children.

I do hope I can ease you mind though about the sweat test itself. It is not invasive or painful in any way. An arm is simply wrapped in a type of 'cling film. If I remember rightly there was a machine involved but only to warm up your arm - not painful in any way. It is to make you sweat so they can assess the salt content in the skin. This was 9 years ago, so if anything the test would be easier still.

You could also telephone BLF but they will not now be there until Monday.

Would you please let us know the results and know we are always here to support you.

Thinking of you and sending gentle hugs to you both.

With love

cx

[Becki2271 in reply to cofdrop-UK]

Thankyou very much. I'm just trying to think of anything possible that it could be or what's causing all the mucus ect. Say if it wasn't cf what else could it be with him having psuedomonas in the sputem sample? I'm not very educated on this bacteria and the consultant hasn't said anything in detail. He's currently taking co-omoxiclav antibiotics for 4 weeks and I have to advise the consultant how he is after w weeks. Of course I will let you know the out come just all very daunting at the moment. Thankyou for your reply x

[cofdrop-UK in reply to Becki2271]

My heart goes out to you Becki. I understand how daunting all this must be for you.

You don't say when your little ones' sweat test is. I hope you don't have to wait long. Pseudomonas can be eradicated but frequently, adults can become colonised. This means the pseudomonas bacteria lays dormant in the lungs but comes out to party and cause problems some of the time. In adults people often take prophtlactic drugs eith oral or nebulised or both. Pseuo is what they call a graam negative bacteria, ie it has a biofilm surrounding it, which is the reason you need an ab suitable to kill gram neg bugs.

I am saying 'adults' because, although I had respiratory problems from such a young age, treatments have improved so much from those days and paediatric respiratory treatments are a speciality within themselves.

When you have a diagnosis I would definitely make sure you are referred to a paediatric respiratory consultant who has a special interest in that praticular condition.

I would advise you to telephone the BLF helpline in the meantime 0300 030 555. They have excellent nurses and are very knowledgeable in both adult and paediatric respiratory conditions.

Please keep in touch with us.

cx

[dogcyrus]

Where do live? If in Sydney Australia I can try to point you in the right direction

[Hidden]

My daughter was born early and small and spent 5 weeks in special care. She had various problems, none serious, but was sent for a sweat test when old enough just to rule out CF. Also had hearing test. I believe the sweat test is done if baby has any issues which could be CF related. She had various chest problems and infections over the 1st few years but has grown out of most of them and now (late 20's) only has mild asthma. Would advise not worrying about what might be but deal with the here and now and adapt to changing circumstances when you need to. Cuddles help.

[Shancock]

Hi, I'm so sorry for what your going through. My son has disabilities and medical issues, also epilepsy so I understand the constant worry you face. You just want to make them feel better and you can't take the problems away so it's heart breaking. I am sure whatever the outcome you will all cope and get through it, it's what we do I guess.

Good luck and I'm sure you have some answers soon xxx