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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...
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...
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...
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...
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...
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...
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...
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...
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.
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...
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...
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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