Looking for some advice and help for my 5yo son (long)

My son was born at 37 weeks. He was seemingly healthy at the hospital. By 3 weeks old he developed what I thought was a cold ...it was a loud mucussy rumbly cough that also led to wheezing and resp distress. We started hin on breathing treatments and prednisone.  The wheezing comes and goes but the mucus wasthere to stay.  He was tested for an esophageal fistula - came back neg and then a sweat test during his 1st year of life - came back neg.  He has no GI problems other then serious constipation but I attribute it to his medications.  He is on Xopenex twice a day by nebulizer and flovent as well as singulair.  He suffers with chronic mucus but is hardly ever "sick".

He is dx'd with asthma and he lives with the mucus.  recently he was dx'd with pneumonia when I brought him to urgent care for a fever of 104.2. They did a CXR and determined it was Pneumonia....I really didnt believe them because I said...he always sounds like this so I FINALLY brought him to the pulmo after 2 years withiout. She sched an upper GI (normal) and a bronchoscopy.  She said what she found surprised her.  She said deep in his lungs they are clogged with very sticky thick mucus - so thick she could hardly get any for testing.  What she did get came back positive for several bacterias including staph.  We are set to have another sweat test done Monday.

She said the mucus was cloudy - not green or yellow - but she said there was so much and it was so thick - she said it was bubbling up.

He is relatively "typical" sized - no other "markers" - he does have clubbing of the fingertips but as I said he is asthmatic.

My question - how often is a sweat test neg and a child comes back to test positive?  What "else" could cause thick sticky mucus in the lower part of the lungswith no sign of illness? 

Is this CF?

Thank you

Amy

Hi there Amy, I'm glad you have found healingwell, and hope we can provide you with any help and support you may need.

Wow, can understand why you're scared.
Every new parent of a child diagnosed with anything has a lot of fear. To not know what is making your child so ill, with no known ways to treat it must be very frightening.

It is possible for a borderline sweat test, to then be tested positive. I don't think it likely for a negative test too come back as positive. Though a negative test depends on what a doctor has believed too be negative in the frst place. Some will say negative, but it is what many believe to be a borderline test. If that all makes sense so far.

CF has many problems and symptoms. The CFTR protein can cause fault in many different parts of the body, which is why everyone with CF is so different and why there is so many problems the gene can cause.
Low weight is a typical early sign of CF, but not a definate one. Depending on the mutation of the gene, and whether any other genes cancel it out, depends on whether CF affects enzyme production. I have friends who don't have a problem with their digestive system at all, and are over weight with CF.
Another thing about CF, is not many people actually look ill with it. Curse and blessing at the same time. A LOT of people with CF look normal, and a lot of the time, doctors will have too treat patients not on what they look like, but how they say they feel, and sometimes on figures such as lung function etc. CF usually involves a lot of guesswork.

White blood cells-I'm not very up on tbh. The other day, when testing my kidneys, they said my white blood cells were up, and said this is a sign of inflamation and infection. Also before deciding on treatment, they always test my inflammation markers. Though don't know excatly what it is they test, or figures etc. If your son has had a lot of infections then it's likely to be causing inflammation in his lungs. I am guessing that this is why his white blood cells will be high.

Really thick sticky brown/green mucous can be down to ABPA. This is like an allergy to something called asperigillus. It can be known to cause hard sticky plugs too form in the lungs. However, if this isn't one of the things they have found in the tests, it is unlikely too be this. It is a fungus though, and it's not often people think too test for it.

Here is a link for an article that explains about Brochiectasis:
http://stanford.wellsphere.com/cystic-fibrosis-article/what-is-bronchiectasis?/213874

This lists a couple of things which may be helpful too you, however it is very hard too understand fully. I just thouht I'd pass this on as a useful piece of info, even if you cannot use it.

Unfortunately, the only way of diagnosing CF is by testing the sweat or testing for the gene itself. I hope the results come back quickly, and that your son recovers quickly from whatever it is causing the problem, and most importantly that it's something easily treatable and not CF.
If you need help on anything please post, just please be aware that any answers you get are probably going too be very CF specific, and therefore maybe not 100% correct as too your sons condition. You are always best asking your sons doctor in cases like these.

All the best
Gem

Thanks for your reply - I saw the note about your friend(which doesnt make me feel too good either) and I wondered if she had the thick mucus as well.  The thing that the pulmo said was the thick sticky mucus clogging his lower airway - she said it was the thickest she's seen. Is there anything else that causes such mucus?  He's had it since he was born?  He's almost 6?  Does Asthma cause this mucus that never goes away? 

I guess i'll know soon - we have our sweat test tomorrow.  I am also going to ask for his numbers from the 1st one.  I never got them.

Thanks

Amy