clairebells
New member
Hi all,
I finally joined after reading here for months....it's a great place to come for info and support, especially if you don't know any other CF families (we don't).
We have a sweet little four year old girl (Chrissy) with CF (diagnosed at 1 month due to severe malabsorption) and a healthy happy 6 year old girl. Chrissy is double deltaF508, pancreatic insufficient, nasal polyps, prone to intestinal blockages, reflux, coughs a lot etc. She has cultured lots of different bugs necessitating antibiotics (no pseudomonas yet). She gets staph aureus infections a LOT - like six times or so a year the last couple of years. And she gets tired with it, coughs a lot, coughs stuff up periodically etc. One of her antibiotics (Septra) no longer works for the staph, so she's on Keflex now.....seemed to work at first, now she's coughing again - aaarrrggghh! The thing is, even if the culture she had done at the CF clinic last week comes back clear (doubt it!), if she gets a cold after finishing these ABs, you can be sure the staph will be back.
So my question to all of you is, Does anyone have a problem like this with chronic staph? I worry that if she is having this much trouble with staph, then I don't want to imagine pseudomonas! Also, I know it's hard to categorize (and I can never get a straight answer from our CF clinic!) but does it sound to you like she is mild, moderate, or severe?? She is on ten different medications. If I had to guess I'd say moderate?
Anyway my best to all of you affected by this devastating disease, and thank you in advance for your input.
Jenny (mom to Chrissy 4 w/CF)
I finally joined after reading here for months....it's a great place to come for info and support, especially if you don't know any other CF families (we don't).
We have a sweet little four year old girl (Chrissy) with CF (diagnosed at 1 month due to severe malabsorption) and a healthy happy 6 year old girl. Chrissy is double deltaF508, pancreatic insufficient, nasal polyps, prone to intestinal blockages, reflux, coughs a lot etc. She has cultured lots of different bugs necessitating antibiotics (no pseudomonas yet). She gets staph aureus infections a LOT - like six times or so a year the last couple of years. And she gets tired with it, coughs a lot, coughs stuff up periodically etc. One of her antibiotics (Septra) no longer works for the staph, so she's on Keflex now.....seemed to work at first, now she's coughing again - aaarrrggghh! The thing is, even if the culture she had done at the CF clinic last week comes back clear (doubt it!), if she gets a cold after finishing these ABs, you can be sure the staph will be back.
So my question to all of you is, Does anyone have a problem like this with chronic staph? I worry that if she is having this much trouble with staph, then I don't want to imagine pseudomonas! Also, I know it's hard to categorize (and I can never get a straight answer from our CF clinic!) but does it sound to you like she is mild, moderate, or severe?? She is on ten different medications. If I had to guess I'd say moderate?
Anyway my best to all of you affected by this devastating disease, and thank you in advance for your input.
Jenny (mom to Chrissy 4 w/CF)