Port infections--probiotics may cause
Had quarterly CF appointment a week ago and after reviewing DS's meds which included Culturelle, the dietitian asked if DS had a port. I said no and she explained at the recent CF conference they discussed CFers getting port infections from adding probiotic powder into the port (if I understood correctly). So if you or your little one has a port and uses probiotics you might want to discuss with clinic. fwiw (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 10, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
ISO hillrom vest 104
My nephew in Peru has the hillrom vest 104, and his machine broke! We need to get a replacement ASAP. The universal healthcare there doesn't cover the DME and there are no vest companies near them. In seeking out a 104 or 104 part compatible machine! TIA (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - December 10, 2015 Category: Respiratory Medicine Authors: Denise Pattison Tags: Airway Clearance Techniques Source Type: forums
Losing the Battle on Sinus Infections
Please help. We are losing the battle on sinus infections. Sam had his second sinus surgery in October and he has already had two sinus infections. We are in a vicious cycle of three weeks of abx, followed by two weeks of good health, followed by sinus infections, and repeat. We do sinus rinses twice a day with saline and budesonide (sp?). We do hypertonic saline through the neb cubs twice a day. Sam just keeps a sinus infection. I am worried that I am going to have to quit work becuase he stays sick. I say sinus infection but they always start with some kind of virus or cold, then immediately go to an infection. ...
Source: Cystic Fibrosis Families Forum - December 9, 2015 Category: Respiratory Medicine Authors: rosesixtyfive Tags: Families Source Type: forums
Do you change neb cups?
Someone in one of my other threads (sorry for hogging) mentioned changing neb cups for different neb meds. I had no idea. My daughter is 8 and has been using the same neb cup for two meds for years. I also only change the cup every 6 months. Does this sound right? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - December 7, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums
Crowdfunding for Cystic Fibrosis and Other Pediatric Rare Diseases Research Projects
Hi Everyone,
I represent a small pharmaceutical company located in Barcelona, Spain, called SOM Biotech. We are a very young company dedicated to drug repostioning. Drug repositioning is the process of applying therapeutics, which already exist, towards new diseases. In our case, we are focused on drug repositioning for rare diseases.
At the very present we are running a crowdfunding campaign to raise funds to start new scientific research projects in 5 pediatric rare diseases (diseases which affect a small portion of children worldwide). Cystic fibrosis is one of the projects included in our new initiative, which we ar...
Source: Cystic Fibrosis Community Initiatives Forum - December 7, 2015 Category: Respiratory Medicine Authors: SOM_Biotech Tags: Community Initiatives Source Type: forums
Help in testing
So my daughter is 3 almost 4 months. I did the testing and so did my oldest daughter, dont have or carry CF but my infant does carry with a low sweat test under 60 and has symptoms. I was told its possible for that to happen. Now! My daughters father will NOT get tested. His family refuses as well. I recently learned he has another daughter around 1 and I cannot find her (cue random lump sums of missing money from account). They said they need him or his brother or a child of his to get a full testing to narrow down what may affect her and what we can do now. I have more testing on the 14th so i dont know much. Can someone...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 6, 2015 Category: Respiratory Medicine Authors: Kayla Rudder Tags: Newly Diagnosed Source Type: forums
Cayston's Horrible Packaging
cayston.jpg
I've never liked cayston's packaging, but this is new, and seems to be worse than ever! they give no email address on their website, i'm not going to call them, and i'm also not going to send them a letter through snail mail. I just wanted to rant!!
If anyone has any special connections to the cayston people, feel free to show them this. Tell them that i didnt throw those first five away, but that i'm gonna hafta go buy a tiny pair of needle-nose pliers before i can open them! (slightly joking, but not really)
And you only hafta make the mistake once (or in my case, like... 5 times) of using a knife to pry th...
Source: Cystic Fibrosis Adults Forum - December 5, 2015 Category: Respiratory Medicine Authors: DjFunkyFife Tags: Adults Source Type: forums
PCD panel results....more testing
As we wait to see a new doctor at Riley Hosp, we got results from the PCD panel. This is what my message said: results show that she is heterozygous (has one change) for a variant of uncertain significance in the DNAH11 gene, which is a dynein gene.
The change found through testing is a variant of uncertain significance, which means that there is not enough evidence to know for certain if the change is benign or if it is associated with PCD. Because Claire has symptoms that are suggestive of PCD, we are somewhat suspicious that this variant could be significant, and we will request insurance authorization for dele...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 5, 2015 Category: Respiratory Medicine Authors: mom2girls Tags: Newly Diagnosed Source Type: forums
Moving to another state
My husband and I are considering moving from nj to sc. I have some concerns about the move now that i have been diagnosed with cf. I am worried about changing health insurance. Will insurance from a new ins company cover my cf needs or will they call it a "preexisting condition"? Will I be able to continue on kalydeco since i am currently on it off label? What are the adult cf drs like in the charleston area? I'd love to hear if anyone else has had experience with this and how it turned out for them. Thanks for your input in advance. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 4, 2015 Category: Respiratory Medicine Authors: alikat0079 Tags: Adults Source Type: forums
Educate me about Pseudonomas please
Hi All,
My daughter is preparing to go to the hospital next week for a PICC line and IV antibiotics. She is 8 and has never cultures pseudomonas. However, her CT scan shows some infection and blockage deep down in her lungs. While she is getting the PICC she will have a bronchioscope and they will suck out some of the gunk that is way down deep and they will culture it. I will be shocked if it is not growing pseudonamas. This scares me as I have heard that it is really hard to get rid of and always comes back. I feel like her culturing it is the beginning of a very long losing battle.
She will receive antibiotics b...
Source: Cystic Fibrosis Families Forum - December 3, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums
Which is the best Ambry Genzyme quest or someone else?
Just got back results from Ambry . Had cftr full gene and cftr del/duo done on my husband. Came back in11 days with nothing found not even the M47OV which my daughter has and I don't . I am not happy with this Ambry testing since we have hers and mine and we're trying to find what she hot from him (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - December 3, 2015 Category: Respiratory Medicine Authors: aqua8522 Tags: DNA and Mutations Source Type: forums
Support for genetic testing with negative sweat test
I know we often say you can have a negative sweat test and still have cf and have noted several here have had that happen and have recommended posters to push doctors for genetic tests when cf symptoms but negative sweat test. But it sounds like the doctors don't buy it...well in searching for something else I found this from cff.org
https://www.cff.org/PDF-Archive/Diag...trics-2007.pdf
Guideline 16 summarizes this point with a reference to a journal article. So those pushing for genetic testing based on symptoms this might help. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 3, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
should I push for testing?
Ok, I have never done this before, but I need some advice. A little bit of history-my husband(27) had very frequent lung infections as a child. His bedsheets always had a salt residue on them from his night sweats(which he still has). They had him tested for cf, but his results were borderline, & he was never retested. The summer before we got married(he was 20 years old), he ended up in the ER for diagnosed pleurisy. From that point on, he has had a chronic cough, & allergy symptoms that don't ever go away. Fast forward to current. He is exhausted. He can't sleep at night, & his sinus infections will not go aw...
Source: Cystic Fibrosis Adults Forum - December 2, 2015 Category: Respiratory Medicine Authors: themrsstacey Tags: Adults Source Type: forums
Need advice from more experienced parents
Hi All,
My daughter has been doing really well up until a couple of months ago. Her PFTs started dropping. She just finished a course of Augmentin as she was culturing an abundance of staph. PFTs stayed the same. Had a CT scan which shows loss of elasticity and some scarring in the lower lobes. Is going in next week for a PICC and IV antibiotics and intense chest therapy. She is in the Orkambi trial and, thankfully, I believe it has helped her maintain a healthy weight. She was in hospital two years ago at this time and she looked very sick. Today she is pink, active, has a healthy BMI, o2 at 98%.
My fear is tha...
Source: Cystic Fibrosis Families Forum - December 2, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums
Diagnosed at 36
Hi everybody,
I joined the forum when i was diagnosed with cystic fibrosis this summer, but for some reason I couldn't post under my old screen name.
I was diagnosed in July after my pulmonologist did a full panel of bloodwork. I had previously passed 2 sweat tests. I have moderate bronchiectasis and am culturing m. absessus. I spent 4 weeks on iv antibiotics this summer and got pancreatitus as a side effect. This was my drs big hint.
As i said in the title i am 36yo. I had no idea anything was wrong with my lungs till i got pregnant with my now 4yo son(carrier-d1125h). At 5 weeks pregnant i had my first and only re...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 2, 2015 Category: Respiratory Medicine Authors: alikat0079 Tags: Newly Diagnosed Source Type: forums
