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    5 year old Daughter MIGHT have CF

    Hi Diana, My Daughter was diagnosed at 4 years old. The newborn screening can yield both false positive and false negative results. In my daughter's case, she had a positive result on the first test, and a negative result on the second. Almost always, they will throw out a positive result if...
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    Workplace Discrimination

    Get fmla. Does your contract prevent that?
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    Sterilizing with an Avent steam sterilizer

    Why do i find out stuff like this here, and not from my clinic??
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    feeling sorry for ourselves...

    Disclaimer... I am going to be very honest with this because i need to right now. If you don't agree or have anything positive/helpful to say, kindly ignore me. And please respect my choice of atheism and spare any religious talk because it does not help me. my daughter is almost 6. She was...
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    how long do you give oral antibiotics before you give up?

    So my question was not should i stop giving her the cipro... I know better than that. i was just trying to decide if i should wait until the 24th for pfts or call sooner. they usually want to do 3 weeks of ivs with her. It would be nice if those 3 weeks didn't fall in during her last weeks of...
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    how long do you give oral antibiotics before you give up?

    Cultures not back yet, but typically she grows multiple strains of pa, achromobacter, and sometimes staph. I forgot to mention the cough is piggy backing off a virus, so I'm pretty sure it's her bacteria running wild. This pattern is normal for her, but the cipro usually works within a few days...
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    how long do you give oral antibiotics before you give up?

    I appreciate the bluntness. Would you expect to see improvement after a week of oral antibiotics?
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    how long do you give oral antibiotics before you give up?

    Hi everyone.. I need some advice. My daughters pfts were down to about 75 from her normal 100 last week in clinic. She's had a productive cough for about 2 weeks now. They started her on cipro on Tuesday which normally kicks her cough within a few days, but here we are on Saturday and i don't...
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    Bowel Obstruction Aftermath

    Hi my friends, Saw the GI today. He was somewhat helpful. Suggested that we test for celiac due to DD's bloated tummy and cramping. Apparently there is some evidance that it is more prevalant amoung the CF population. We shall see... He basically said that due to her having dios, we should...
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    Bowel Obstruction Aftermath

    The GI doc I met once in her clinic. He was newly hired and was doing a orientation with the CF clinic. He is a GI, but was introduced to me as a GI doc with lots of experiance treating CF. We are in Seattle WA, but his name is Jeff Fahl. One thing I learned, is that I will NEVER allow them...
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    Bowel Obstruction Aftermath

    I'm so glad I found this post! Just wanted to chime in with DD's story. She's been complaining of stomach aches, especially in the morning for a few months. I talked to her doctors, and we all thought it was acid reflux. We increased her PPI. A few weeks later with no improvement, we...
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    Bad breath

    I think it can be an indicator of acid reflux and/or indigestion, especially if it is more prominant in the morning. Also the CF diet is not good for anyone's teeth. This is why oral hygine is very important with cfers.
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    Blocked Plumbing and Funny Stories......

    Unfortunately, it's not a toilet story, but I have horrible poop story. I went to visit family that I hadn't seen since I was a kid with my daughter. She was about 1.5 and hadn't been diagnosed yet. We were in Florida and she was wearing a swim diaper and running around drinking juice boxes...
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    Insurance Tips Please!!

    I'm a fellow washingtonian. If the coverage is for your kid(s), medicaid should pick them up. I was told that if there was no employer sponcered health plan, they would cover my daughter. Also, you can talk to the financial assistance department at your clinic. They usually have local...
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    Fistula? (sp?) anyone heard of it for ivs?

    People usually have a fistula placed for hemodialysis. No, I've never heard of it being used for IVs, but I suppose it makes since. It's an implanted devise, larger than a port. I beleive it has a motor or something that keeps blood circulating constantly. This prevents the blood from...
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    Himalayan Salt lamps

    Hi all, Has anyone ever used these? My dad just got back from Australia, and heard about this treatment there. Apparently, it's pretty widely accepted there. I am a bit hesitant to try treatments that haven't been studied extensively... Don't want my baby to be the guinea pig I guess. This...
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    Experience with IV antibiotic Meropenem

    Daughter had Flu symptoms after being on it for 4 or 5 days. Damn doctor wouldn't admit it was caused by the antibiotic until she got a severe rash after day 6-7. Sometimes they are so stubborn. She's also allergic to chloraprep and most tapes. BTW, Anyone hear any news about new...
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    pancreatitis in kids?

    Sounds like some poop tests are in order. I would also suggest asking for nutrition labs if they haven't been done recently. good luck!
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    What song do you relate your CF fight to

    Queens of the Stone Age- No One Knows We get some rules to follow That and this These and those No one knows We get these pills to swallow How they stick In your throat Tastes like gold Oh, what you do to me No one knows And I realize you�re mine Indeed a fool am I And I realize you�re mine...
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    Eflow-Cayston-almost 4 year old?

    Starting cayston for my 5 year old as soon as insurance approves it. She started doing nebs with a mouthpiece at 4 1/2. One thing that worked well was counting every breath... So every time I'd say a number she'd take a deap breath and then wait until I said the next number. Lots of counting...
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