difficulty with determining illnesses with my cf child

My daughter is 11 years old and was diagnosed with CF at 8 years old.  They had a hard time diagnosing her before the CF dianosis, but now they still have trouble.  She has started having tightness in her chest and saying she cant breathe.  We did xrays and cat scans and they came back good.  Still does not answer the question of why she feels like there are bricks sitting on her chest and like she is breathing in glue.  She has had 10 days of oral prednisone, 14 of augmentin and now another 14 of clindamycin.  She stated throwing up yesterday and it was mostly mucus.  Oh and she used to have mucus coming up all the time, the last 3 weeks, when this started, she has had none!!!  Help Please!!!

Hi there Donna, welcome to the forums!!

One thing about CF, is that it never makes any sense (seriously it doesn't make any, lol). Each person with CF has different symptoms and boundaries. This makes diagnosing things in CF difficult. I completely sympathise with you and your daughter, there have been so many times my CF team have got it wrong and left me suffering for months, because their tests don't show anything. My lung function tests will be fine, my xray will be ok, but my chest is just aching from coughing and that feeling of not quite being able to manage a full breathe in. Coughing to the point of throwing up is common for me also, though has a been a lot less since been diagnosed with acid reflux and put on Omeprazole-so that might be something to look into, as it is a common CF problem.
Also is your daughter on any mucus clearing nebulisers? Hypertonic Saline and DNase (Pulmozyme) are common meds for this purpose. Or, long-term antibiotics like Azithromycin- a lot of CF patients now take this daily as it reduces the inflammation and biofilm formation of psuedomonas and on the side also works on Staph A.

Oh, also have checks been done for ABPA? It's an allergy to a fungus called Aspergillus that happily floats about in the air, and generally gets on lungs more in hayfever season. It is regularly tested for at our CF unit, but I know not all do this.

Hope this helps,
Gemma

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I'm from the UK!!!!! If anything I say makes no sense to you, let me know so I know how not to be so English.

Post Edited (Darkies Gem) : 5/5/2010 3:14:56 PM (GMT-6)

Im currently 15 years old and i had the same situation, but then i got put on the vest and it helps break up the mucus so it dosent feel like that to me anymore and im still constaly spiting up muscus but it clears my chest and air ways!