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,
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Folic Acid, Adcal-D3. I use PEP and Flutter device as my physio as well as the occasional ABC when bored. Had a Port-a-cath fitted on chest wall since Nov 04
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.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)