Fecal elastase test vs pancreatic stimulation ???
I am the mom of a 4.5 years old child in limbo who may or may not have CF. Briefly: several negative sweat tests, 2 genetic tests that both came back with a variant that's known to be related to pancreatic problems but nothing else.
And 5 fecal elastase tests over the years that came back ranging from 150 to 87 (last one recently), done at least in 2 different labs, collected by either my husband or I. Had been diagnosed as PI. And one pancreatic stimulation test recently that came back all fine, the GI doctor told us: he has no pancreatic problems, give him immodium when he has diarrheas.
He has had diarrheas problems...
Source: Cystic Fibrosis Families Forum - March 7, 2015 Category: Respiratory Medicine Authors: sanfloraine Tags: Families Source Type: forums
Vest & Neb Storage
I'm looking for advice in regards to how and where families are storing their vest/neb/medical equipment when not in use. Currently, my daughter's vest is in the living room. She gets treatments twice a day regularly and sometimes 4 times when she's sick. Because of how often she uses it, it doesn't make sense for our family to put it "away" every time. Unfortunately, it gets mess-ily shoved in a corner of the living room with cords and tubes everywhere. I have been looking for a small hutch or side table with doors to store it. I was also thinking my husband could drill a hole in the back for the electrical c...
Source: Cystic Fibrosis Families Forum - March 2, 2015 Category: Respiratory Medicine Authors: aimeeinman10 Tags: Families Source Type: forums
ANTIBIOTICS: How much is too much?
My 10-year old and my 4-year old both do great when they are on antibiotics such as Bactrim or Zyvox. Their coughs almost disappear. However, 24 to 48 hours after they get off the antibiotics, their coughs return. They both only culture MRSA. What I want to know is what issues are caused by just putting them on these antibiotics every couple of weeks and are these issues bigger than not putting them on these antibiotics every two weeks. Thoughts? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - February 13, 2015 Category: Respiratory Medicine Authors: Ryan Tags: Families Source Type: forums
Sinus Surgery in 4 Year Old- Looking for Information
Hi everyone! My son is 4 years old (DDF508) and it looks like sinus surgery might be happenning in the next few months. From Sept-December he was on sick plan almost non stop (3 weeks to get rid of the illness, 1 week off, repeat)-- no huge illnesses but a very insistent cough that kept coming back. He also had sinusitis that whole time as well. He's been healthy since the end of December after a round of bactrim, luckily, but they had him do a CT scan to get a better idea of why he had a hard time staying healthy. Not surprisingly the CT scan showed his sinuses completely blocked up with mucus. They said he's too you...
Source: Cystic Fibrosis Families Forum - February 5, 2015 Category: Respiratory Medicine Authors: CCyr Tags: Families Source Type: forums
Atypical CF? Mild? Or maybe not?
Does anyone have of know what could possibly be synptoms of atypical or mild CF? My oldest son, who is about to be 7, has for all his life had repeats respitory infections. He has severe bronchitis at least two to three times a year, and always has a nasal infection. My other 4 never catch it either. He also has chronic constapation that he has had since a baby. It has gotten to the point where he has tears that bleed. He's also has really bad tooth decay, and has needed lots of cavities filled. Our pediatrician doesn't seem to be too concerned. My son was never tested for CF as a newborn because they didn't donthe testing...
Source: Cystic Fibrosis Families Forum - February 4, 2015 Category: Respiratory Medicine Authors: GertA~mom~of~5 Tags: Families Source Type: forums
homage to my beloved son died after 28 years of fight
https://www.youtube.com/watch?v=Ord9...ture=autoshare (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - February 4, 2015 Category: Respiratory Medicine Authors: jpt Tags: Families Source Type: forums
R117h
My son is almost 3 and was found to have the mutant R117H 7t/9t in his newborn screen (kansas does the most common 40). We did a sweat test at 3-4wks old and it was negative. Since then we have struggled acid reflux as a baby and ongoing diarrhea. And frequently episodes of croup as well as him throwing up mucus. He snores as an infant. I do feel like he tastes salty now. At least compared to his sister's. After reading up on this particular mutation I wasn't sure if it would be worth pushing for full DNA testing to see if he has a rarer gene. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - February 2, 2015 Category: Respiratory Medicine Authors: aphillips Tags: Families Source Type: forums
Question for quantity of defecation
Hello everyone,
My daughter, nearly 5 years old, were defecating once daily, but since last moth she began to do it once in 2 or 3 days. But she does not have any stomach aches or other sympthoms,also she does not have any difficulty to defecate. Is that something that i should be doubtful? Is it a matter of pancreatic insufficiency which will cause an ileus? Any experiences please??
Thanks a lot (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - January 22, 2015 Category: Respiratory Medicine Authors: kguben Tags: Families Source Type: forums
Salty Kisses--is it really an indicator?
I've read that it can go either way--that some people with CF taste salty, while others don't.
What has been your experience when it comes to salty forehead kisses?
Today I was holding my 4 month old, and she got slightly sweaty from sleeping against my chest. I kissed her forehead and licked my lips, and they tasted salty (I do this often, it's not the first time I've "checked" her saltiness this way). But then I started thinking about it, and it's a pretty normal thing for sweat to taste salty...right? When you're working up a sweat and it drips in your mouth, it usually tastes salty...at least in my exper...
Source: Cystic Fibrosis Families Forum - January 5, 2015 Category: Respiratory Medicine Authors: Mama2Five Tags: Families Source Type: forums
International Conference on Pediatric Chronic Diseases, Disability &Human Development
International Conference on Pediatric Chronic Diseases, Disability and Human Development will be held in Jerusalem on 20-23 January, 2015.
I just wanted to share this with anyone who might be interested in attending or who might know someone that would like to go. It sounds quite interesting!
http://www.pedchron.com/ (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - January 3, 2015 Category: Respiratory Medicine Authors: JustaCFmom Tags: Families Source Type: forums
REGISTER NOW FOR NEW PARENTING TELECLASS: Winning with CF
REGISTER NOW FOR NEW TELECLASS: Winning with CF: Tools, Tips, and Tactics for Raising Healthier Kids
Dear Parents and Guardians ofKids with CF,
Wouldn't it be nice to knowabout the parenting potholes in the road of life with cystic fibrosis so youcan avoid them? A new parentingteleclass (by phone on Sunday evenings) starts on January 18 which will help youalong the way. Discover how to:
·Motivate children to make wise choicesabout food and medication.
·Put an end to power struggles, arguing,whining, and complaining.
·Promote responsibility without nagging,lecturing, yelling, or bribing.
·Recognize and avoid c...
Source: Cystic Fibrosis Families Forum - January 2, 2015 Category: Respiratory Medicine Authors: LisaGreene Tags: Families Source Type: forums
Christmas cough
It never fails that this time of year is hard. Too many germs. My daughter had a dry cough last week(I was hoping it would go away, trying to ignore)..She had a routine CF appointment last week. This week she started feeling more yucky, tired increase in cough(really dry and irritated cough, yesterday she had a fever:( called the clinic and sure enough she grew some staph. She's on high dose Bactrim started that yesterday...We are planning on going to visit family at the end of the week. Today her lungs had a few squeaks which cleared....Not sure if this trip will happen...Feel like we are always disappointing our f...
Source: Cystic Fibrosis Families Forum - December 23, 2014 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums
Are you a parent who has lost a child to CF and has another still living with CF
My DD 20 passed away on 2/08/2013, her 13 YO sis doesn't have any confidence in our CF Clinic bc of mistakes made. Other clinics are at least 3 hours away. Any advice from parents/ siblings on how to encourage 13 YO to continue treatments ? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - December 22, 2014 Category: Respiratory Medicine Authors: heather1 Tags: Families Source Type: forums
