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Posted By : sabrina1983 - 6/26/2015 2:04 AM
Hi all.

My son growth pseudo 2nd time within 6 months. He detected earlier after 2 days fever. At first doctor see pneumonia after did an x-ray. But after sputum test come out, it showed pseudo.
My question is, is it normal for 18 months baby to have such a frequent infection? Is it becoz he is still small or his immune system not strong like adult? It will effect his lung function?

I'm stressed out!! I do anything to protect him and end up this infection happened again.
Is it possible he will need oxygen support because of this recurrent infection? Im afraid because he is too small to rely on oxygen. Based on my reading, it is rare small cfers to rely on oxygen. Is it true?

To cf mothers outhere, adult cf..pls share me your experience when you was small. What should i take to make sure he stay healthy. I crying all night evertime i saw him suffer with all the suction and needles. This year we already done 2 admission with 14 days of iv each. Its stressed out. Help me pls confused

Posted By : Gemsi - 6/30/2015 4:59 PM
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.
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

Posted By : Wiley Coyote - 7/12/2015 6:20 PM
Is your son being treated at an accredited CF center?
2X-3X daily CPT and nebbies? Digestive enzymes if he's PI?
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos

Posted By : sabrina1983 - 7/20/2015 1:18 AM
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



confused confused confused confused

Posted By : Wiley Coyote - 7/21/2015 7:19 AM
It is my understanding that 3% hypertonic saline is safe in infants and toddlers. It may need to be mixed with something like albuterol though, a bronchodialator. Pulmozyme is also used in infants, since I have heard of children as young as 1 month being started on both. If your son is already culturing Pseudomonas, I would try and start him on the preventive nebbies as soon as possible. You also might want to think about starting TOBO with him, it is an inhaled antibiotic that fights Pseudo. I know kids as young as a year old have been on that too.

Please keep in mind you should have your doctor check on all of these meds. I am NOT a doctor. I am just going by what I know other children have been prescribed in the USA.

Posted By : sabrina1983 - 7/21/2015 11:12 PM
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.

Posted By : Wiley Coyote - 7/22/2015 4:54 AM
Sabrina, that was a typo, it is TOBI.
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos

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