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I was wondering if any of you have organized a support group or advisory board for your cf clinic? I have been talking to our social worker lately about getting a group together and she wrote 2 sentences in a newsletter asking if anyone was interested and didn't get too much response. I think...

my 4 year old has been having stomach issues for the last month and a half. constant stomachaches....etc. weird appetite...back and forth on wanting to eat like crazy, not wanting to eat at all. His last stool elastase was 270 a year ago. He's had no drop in weight but hasn't grown or gained any...

After reading some old posts about carpet and the gross stuff it can keep on it... i've been thinking about purchasing a carpet cleaner as my baby is right at the verge of crawling. Right now, I lay out a clean comforter on the ground for him to play and roll around on when he's not in a...

Thought this was kinda intersting and didn't even think of it when I created my signature on this site. I listed the boys mutations orinally. The other day, I was in the mood to read some case studies in medical journals etc, so I googled the mutations. Lo and behold, my boys names pop up! The...

well, i'm in the hosptial with my son, and he is on tobramycin and fortaz. Last time he got c.diff so this time i asked for florastor (a probiotic) before we started ivs. Despite me trying to be preventative he ended up with it again! does this happen every single time you get admitted? or is...

I don't know if anybody else has this problem, but it drives me crazy! my mother, despite being a source of support since dianosis, is always understating the boys cf. They are pancreatic sufficient... so she is always referring to them as a "mild case". I am constantly hearing...things like...

well, i'm in the hospital again with my son, was in for 2 weeks in december, now we're in for sepsis. Anyhow, they are going to do an infant pft on monday. I am in california and treated at miller children's hosptial in long beach. I guess it involves sedation, and putting the babies in this...

i have an ultrasound scheduled for my son on monday. apparently labs came back abnormal for liver function. It's like quadruple the number it's supposed to be. anybody have any experience with this. my son is pancreatic sufficient...just respitory issues at this time.. (or so i thought.) i just...

do you know where i can find some case studies on mutation d1152h with delf508? how common is that combination?

i'm a mother of 3 children with cf. anyone have more than 1 child? how do you cope?

anybody have mrsa? is it as resistent as they say? can my kids give it non cf'ers?

This week has been crazy for me. I just found out Oct 30th that my baby boy Diego has CF, through newborn screening. due to change of insurance since his birth, i didn't find out that he had it till 3 months later. now, on December 2nd, i got back the dna results, and my other two boys have it...

Was wondering who takes care of your kids with cf? I have been taking mine to work with me, he's 4 months old. I am co-owner in a company, and everybody has been sympathetic to my situation. however, I'm afraid to put him in daycare. My other kids are preschool and kindergarten age and bring...

my name is Andrea and my son Diego was diagnosed through newborn screening. He has mutattions DELf508 and d1152h. anybody have or have kids with these? He's 4 months old...so far, pancreatic sufficient, but has respitory issues...wheezing and crackling....thought he had rsv but that came neg...