Hypertonic saline mixed with other medications in the same neb session
Is it ok to mix hypertonic saline with other medications in the same neb session? My DD is on Combivent (Ipratropium bromide + albuterol sulphate) and pulmicort (Budesonide) and I was wondering if we can mix the HS with them or should we do it seperately? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - July 25, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums
Anyone started IV antibiotics instead of orals for their first ever infection?
I was wondering if any of you were ever put on IV antibiotics for your first infection?
My daughter is 4 years old, was diagnosed with CF at birth by newborn screening and has been very healthy since. She recently started coughing (about a month ago) and her doctor insisted on doing a sputum culture before prescribing her anything. It was a very hard couple of weeks trying to teach her how to cough sputum and then finally we were able to do it. She cultured Hemophilus Influenzae and her doctor immediately wanted to admit her and give her IV's for 10-14 days (she also developed a low grade fever 2 days prior to the culture...
Source: Cystic Fibrosis Families Forum - July 23, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums
CRMS and Culture results
My 1 year old son has a CRMS dx. He just had a clinic appointment a week and a half ago which resulted in a second negative sweat. Our pulm said at the appt that he appears to be healthy - clear lungs etc. She called yesterday to tell me that his culture results came back positive for staph, Chryseobacterium Indologenes, and Acinetobacter Baumannii but that because he is appearing healthy and has a negative sweat that they are nothing to be concerned about.
Today he started having a running nose. He's 12.5 months so my first thought was teething. But as the night has progressed he has been seeming to be having some resp...
Source: Cystic Fibrosis Families Forum - July 19, 2015 Category: Respiratory Medicine Authors: emason Tags: Families Source Type: forums
For those with kids taking Orkambi
Hi All,
I am the mother of an 8yr old with CF. She is DDF508 and is in a trial for Orkambi now. I know 100% she is on the drug but I don't know the dosage. Her health is great right now (knock on wood). She is gaining weight, her activity level is great, and no coughing at all. While I want to believe Orkambi is having an impact it could also be due to the fact that she is out of school and away from sick kids and is swimming every day.
If your kids are on the drug what are you seeing in terms of impact?
Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - July 16, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums
Just found out daughter has Mycobacterium Abscessus
We just found out my daughter 11 has mycobacterium Abscesses (not MAC which she has also cultured in past but now apparently clear) and will start the treatment process soon.
right now they r recommending IV Amikacin, IV imipenem, and azithromycin for at least 5 weeks (up to 3months) until cultures clear. Her pfts are still in the 80s/ low 90s, but it's still a drop from her baseline of over 100 last year. Do you have any advice as we start this journey? We are thinking of doing a port instead of PICC due to the potential length of time. I am starting my research on treatments and these medicines.... Seems like they wa...
Source: Cystic Fibrosis Families Forum - July 16, 2015 Category: Respiratory Medicine Authors: mep65 Tags: Families Source Type: forums
Saw this and I had to share. People experience running like they have CF
https://youtu.be/8OALfJWS8jE (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - July 15, 2015 Category: Respiratory Medicine Authors: kenna2 Tags: Families Source Type: forums
best friend of over a decade is declining...
Hi all. I guess this is the kind of place to talk to people about this. Even a month ago I would never have thought about looking for resources like this forum.
My very closest friend of the last decade, who I consider a sibling, has CF. She is 100% my family and I love her dearly. We met in 5th grade and I'm now a junior in college. Even though my college is two hours away we text pretty much every day. Every one at my university knows who she is.(L)
She, however, has stalled out at home and stopped doing her treatments. Throughout our friendship she has gone in the hospital about twice a year, once if it's a great year...
Source: Cystic Fibrosis Families Forum - July 14, 2015 Category: Respiratory Medicine Authors: xenadog Tags: Families Source Type: forums
Mac
I am a long time viewer, but first time writer on this site. My daughter- age 12, who has CF, just cultured positive for M. Avium complex (MAC) NTM for the third time in 12 months. I was told by the doctor two months ago, that if she cultured positive again that we could have a discussion on a way forward. Until last year, her PFTs were above 100%. 6 months ago, they went down to 80% and last month they were 90% -- better, but not back at her baseline. She is an active girl - swims and plays tennis competitively year round and generally feels very good. She has only been hospitalized once for pseudomonas, also in the l...
Source: Cystic Fibrosis Families Forum - July 1, 2015 Category: Respiratory Medicine Authors: mep65 Tags: Families Source Type: forums
ANy parents with feeding tips and tricks?
Our dietitian recomended getting some avacados into our lil ones diet. It has all that good fat, high calorie, and vitamin and minerals that could be so benifical to her diet and well being. So I gave it to her and she gulfed down half of it. I also let it ripen a lil more. Since then she wants nothing to do with it. Loved it and now hates it. I don't get it. Lol. I've tried mixing it with other things. Has anyone gone through this and any recipes for what there lil ones liked? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 27, 2015 Category: Respiratory Medicine Authors: lrs2015 Tags: Families Source Type: forums
Vest For Donation
I know someone who has a barely used vest to donate. Her mother passed away about a month ago from a non-CF lung condition, it was her vest. It hasn't been used in over a year and her mother only used it for about 2 weeks so it is in excellent condition. She would like to donate the vest to someone with CF.
It is made by RespirTech and purchased in March 2011. Here is the information she provided:
Item 500008-000/HFCWO Air-pulse Generator System. Serial No. UD03M12. InCourage System Jacket kit size 40. Everything is included in kit - Filter, fuse, cord hose and case. Boxed and ready to go. The website is:
inCourage® ...
Source: Cystic Fibrosis Families Forum - June 27, 2015 Category: Respiratory Medicine Authors: Rosie55 Tags: Families Source Type: forums
Which air compressor do you use in the United States? Travelling there- need help!
We are coming to the United States (NY) for a couple of months and haven't been able to find an adaptor or transformer for our daughter's PARIBOY SX, so are wondering if we need to buy something over there to fit her LC Sprint nebuliser (we currently use hypertonic saline only). Any ideas? Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 22, 2015 Category: Respiratory Medicine Authors: Helenlight Tags: Families Source Type: forums
Having another baby- how was your journey?
So I'm interested to know what people's experiences are with deciding to have more children after you've had one diagnosed with CF. I always thought we'd try naturally knowing that there was a possibility of having another with CF, but I've recently changed my mind to thinking IVF with PGD is probably the more sensible option. Our daughter (DDF508) is 3.5 now, and though I wouldn't change her or our journey so far, I think having any more children with CF would stretch us too far and impact what we are capable of giving to our children, to each other, and to our lives in general. Another option that my SO has put on the ta...
Source: Cystic Fibrosis Families Forum - June 18, 2015 Category: Respiratory Medicine Authors: Helenlight Tags: Families Source Type: forums
IVS changed every 24hrs??
So my friend has cf and has been in hospital since last week. She has a port, but lately hasn't been working. They gave up on port & put in IV, but changing it every 24hrs...is that normal? I thougt IVs were good for few days. She's just miserable & wondered if this was normal to happen. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 15, 2015 Category: Respiratory Medicine Authors: Ryan_cfsupporter Tags: Families Source Type: forums
Anyone using alternatives to the vest in young kids?
Hi all. We travel a lot and are looking for alternatives to the vest for our little one (3years). when it's both my husband and I travellibg its not such a problem but if I travel alone it me, two kids (twins) a stroller, 2x car seats, back pack of stuff and a 28lb compressor!!!!! Not a lot of fun! Anyway cups are a bit of a non starter as its like wrestling a small alligator and think I get more of a work out than his lungs do!!! Any thoughts greatly appreciated (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 12, 2015 Category: Respiratory Medicine Authors: lovemyboy507 Tags: Families Source Type: forums
Mother's Day
This is an interview my daughter Sarah did many years ago...with Lisa Greene. Lisa is a most amazing MOM of two children with CF! Days must be challenging for Lisa as her husband surprisingly died a few weeks ago.
https://www.youtube.com/watch?v=c5hRLWgPLaM
May God give her strength and peace as she continues to inspire us all!
Happy Mother's Day!
Salt and Light,
Jeanne (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - May 10, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Families Source Type: forums
