Infection and lung function??

Hi Sabrina,
Sorry for the late reply, been busy.

It could be that the pseudo isn't gone in the first place and is still hanging around in the lungs. It normally takes 3 clear sputum results over a year before they can really declare you free of it.

I've not heard of small people with CF being oxygen reliant. Oxygen is only need in cases where saturated blood oxygen levels drop below a certain level.

Is he on nebulisers to help open his airways and antibiotics? My understanding is they usually treat CF infections quite aggressively while children are young to help make their lungs stronger when they're older. IF there are recurrent episodes of pseudomonas infections it may be that he needs constant antibiotic treatment rather than just hitting it with IV antibitoics everytime it shows up.

At 18 months old your son will be having swabs taken for sputum I'm guessing, which aren't as accurate as coughing up a sputum sample like you can as an adult.

It must be horrible to see your little one suffering. I hope they find some treatment for him that helps him.

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Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 29 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Proximal Myositis, Polyarthralgia

sorry for late reply.

In my country, I mean Malaysia, we do not have a CF Centre. My son only referred to General Hospital under this Respiratory Specialist team.

For now, my son only take :

5x creon a day
2x CPT & 3-4X CPT when not well
5ml multivitamin
2ml vitamin K
2x Flixotide inhaler
2x Ventolin inhaler


is it ok? Is it enough? I know it sounds stupid but if I compared what he took now with what other Cfers in UK & US take, it totally differ.

His Dr do not recommend for nebuliser.
But I will give him 3% hypertonic saline 2x a day when he has cold & chesty cough ( I bought from Pharmacy)
Is it safe for 18 months baby?
I'm quit worry about him but I don't know to whom should i refer. We do not have any support group here and the Dr keep saying that inhaler is enough for him. But base on my reading I can see most of CF baby will take nebuliser.

Pls correct me if Im wrong.
I am really needs your opinion on his meds

Hi.

We do not have TOBO in my country.
For now, he only take 4x oral antibiotics and 2x hypertonic saline.
He's getting better as no chesty cough.
On top of that i gave him Pure honey to boost his immune.

Thanks for the advise.