Why was my post deleted?
Hi, I posted about a research opportunity in Cincinnati, and now my post is gone. Can you tell me why it was removed?
Andrea
35 w CF (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 14, 2015 Category: Respiratory Medicine Authors: Andrea315 Tags: Adults Source Type: forums
Family health care workers involved in ongoing
education to stay abreast of all the latest developments primary care. How does breakthroughs, patients are offered these helpful treatment personal injury by family doctors.To remain certified, you must pass a family physician a written exam every few years, including three hundred hours of continuing education. If you meet a family doctor, you feel sure are aware of the latest and best treatment options in Southern Will County Health them. (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - December 13, 2015 Category: Respiratory Medicine Authors: Alyssaerin Tags: Exercise & Fitness Source Type: forums
Afflovest?
Just wondering if anyone has used the Afflovest? Is there any significant differences between the effectiveness of that versus the Hill-Rom? My doctor won't prescribe it for me since he has read it doesn't work as well as the Hill-Rom, but I need something portable for business trips. Flutter/Aerobika/ACBT is not effective for me without the help of an "external" form of therapy as well. Thanks for any advice. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 11, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums
Trigger: amnio diagnosed cf positive
In 2010 my husband and I found out we were carriers. We were trying to get pregnant and were screened. Because we both screened positive as carriers we were sent to a fertility clinics to get info on ivf/pgd. We didn't know we were already pregnant. Our first son was born after a complicated pregnancy and premature delivery. He tested negative in new born screen for cf and was declared healthy. Fast forward July 2012 we found out we were pregnant again had an amnio at 15 weeks and our second son was also part of the sacred 25% that didn't carry either gene. Now here we are 2015 and pregnant with our third. We found out af...
Source: Cystic Fibrosis Families Forum - December 11, 2015 Category: Respiratory Medicine Authors: lexi0408 Tags: Families Source Type: forums
Pancreatic Sufficient and Kalydeco
Hello,
Well by some miracle (namely our saintly CF doc) my older son got Kalydeco off label despite only having one known CFTR mutation. He starts tomorrow. I was wondering if anyone else like him (Pancreatic Sufficient) has taken Kalydeco? If so, have you found that eating certain foods with it make it more effective? My son does not have a problem keeping on weight (he is on the chubby side) but he does have intestinal issues when he has a high carb, low fiber diet. He has been doing well with a low Glycemic Index diet when he complies with it (when he doesn't he is on the toilet a lot). But I was wondering what k...
Source: Cystic Fibrosis Adults Forum - December 11, 2015 Category: Respiratory Medicine Authors: fel Tags: Adults Source Type: forums
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
