gene c.3140-26a
I just found out the other mutated gene that my 2 month old son has. He has the deltaF508 and gene c.3140-26a. I think this gene falls into the Class V cartegory but I am not positive. I am wondering if anyone else has experienced this combination or can help shed some light on what Class V is. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 29, 2015 Category: Respiratory Medicine Authors: iwuvwoo Tags: Newly Diagnosed Source Type: forums
Toothpaste brands?
So been researching toothpaste brands and wonder if anyone had any input from the dentist or CF doctor related to CF issues? For instance the ingredient triclosan which inhibits bacterial growth but some studies indicate could make resistant to bacteria? What about baking soda once (for a natural anti-bactrerial impact?) Thoughts??? Thanks in advance! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 28, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
CFTR nonsense w-1204, nonsense w-1143
Chr7: 117,267,718 G>A
Pathogenic
Zygosity: Homozygous
dbSNP ID: rs121908764
Population Allele Frequency: 0.00%
Gene Impact: CFTR NONSENSE W-1204-* NONSENSE W-1143-*
Gene Impact: AC000111.6 INTRON
Hello all,
I'm a 42 year old male and I had all kinds of problems with my lungs all my life (Pneumonia half a dozen times, Bronchitis more times than I can count, and asthma. A few months ago I ordered an Asthma Peak Flow Meter and my air flow is much worse than it should be even when I do not have any asthma symptoms.
For the past several weeks I have had Bronchitis. I didn't bother going to the doctor because this typ...
Source: Cystic Fibrosis DNA and Mutations Forum - October 28, 2015 Category: Respiratory Medicine Authors: oaktree Tags: DNA and Mutations Source Type: forums
Opinions on Florida and living with CF; Doctors, Clinics, Medicaid, etc.
My daughter is almost 18 and has CF. She has been on disability for almost a year. I am considering moving to Florida from Ohio. She is trying to decide whether or not to come. I believe the more stable weather will be a benefit to her. She has been seen at Rainbow in Cleveland her entire life. I need info on the clinics in Florida. How they stand up if a lung transplant is ever required. And insurance matters. She is currently covered under her Dad's private insurance (but not sure how long) and medicaid because of her disability. This is a scary move and decision to change providers after all this time so any i...
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: 65RosesMomof2 Tags: Adults Source Type: forums
Getting fat on Orkambi
Has anyone else been gaining weight like crazy on Orkambi? I know weight gain is one of the positives of Orkambi, and I was looking forward to hopefully gaining a few pounds. I have been on Orkambi for about 2 months now, and I have gained about 13 lbs. I don't want to gain any more weight! Right now it is a little funny that I am having this problem, but I may need to get myself on a diet soon! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: liveitup Tags: Adults Source Type: forums
New collaboration for gene splicing
http://investors.vrtx.com/releasedet...leaseID=938302
this is huge! I've mentioned before out crisp and gene splicing and that they are working with vertex will get t den much faster I think because vertex knows the gene aspect and has the assay to test...likely ten years out but closer and faster every day. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
How positive have the tests been?
My son is 7 weeks old. He had a sweat test two weeks ago and it came back at 81. since then, his other tests results have been as follows:
Throat culture - normal
pancreas - well above normal and dont need to give him the creon anymore
live level - normal
white blood cells - normal
chest x-ray - clear
all other blood levels - normal.
we are waiting for them to finish the genealogy on his blood to find the other mutation and go back on wed for another sweat test.
how likely is it that he doesn't have CF or is just borderline????? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 23, 2015 Category: Respiratory Medicine Authors: iwuvwoo Tags: Newly Diagnosed Source Type: forums
Hill-rom vest for sale
Yes I completely own it. It was for my son, he passed away four years ago and now I'm strong enough to start removing the things that's no longer needed. It's in good shape and works really good. It is an older model and I'm only asking $500 + s&h so that I can put a proper headstone on my son's grave. Contact me at somonemiller@gmail.com 20140507_094206.jpg20140507_094105.jpg
Attached Images
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(90.0 KB) (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - October 23, 2015 Category: Respiratory Medicine Authors: Stmiller Tags: Airway Clearance Techniques Source Type: forums
Help I Need Advice ASAP!
I just moved and have been trying to get an appointment with the center in New Orleans but it's been a headache. They told me they needed a demographic page plus last clinic notes before they could give me an appointment. I called them to see if they got them in the middle of September because she said she'd call me with an appointment once she got that information. They hadn't received that info yet so I called medical records from my old center but they told me they faced the info on September 3rd so I had them fax it again. I waited and I didn't hear anything so I called Tulane back and they got the info but all they s...
Source: Cystic Fibrosis Adults Forum - October 22, 2015 Category: Respiratory Medicine Authors: leothelioness34 Tags: Adults Source Type: forums
Pilots with CF
New to the forum and was diagnosed a year and a half ago with CF at the age of 33. I used the search fuction and found only a few people who have become successful as a pilot. Does anyone have first hand knowledge of the trials and tribulations? After one year of fighting the FAA I was awarded a class three exemption on the medical. I'm currently finishing my hours and should be done in the next month or two. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 22, 2015 Category: Respiratory Medicine Authors: Dsnow1332 Tags: Adults Source Type: forums
Could it be CF in my 14 yo?
My son is 14 years old, weighs 78 lbs and is 4'10". He has had a cough for 2 years now and asthma among other things have been ruled out. He has had pneumonia twice and bronchitis once in this time. He is currently under the care of an endocrinologist because of his growth issues. He is falling farther and farther behind. His latest labs show his FSH to be very low and his LH to be low but not out of range. His vitamin D level continues to stay low despite supplements for the last year. It is currently at 21. He has always struggled with constipation and very large BM's. As an infant he had the same cough he has now ...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 21, 2015 Category: Respiratory Medicine Authors: snowborden1 Tags: Newly Diagnosed Source Type: forums
Fish oil
Do you take? What brand do you take? I do give fish oil daily to my daughter. In the past I had bought Nordic Naturals. last time I just got what was at the drug store. Thinking of going back to Nordic Naturals...What types do you use? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 21, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums
Qvar 1 or 2 a day?
So DS doctor wants to up his qvar or rather has. She gave us the choice of a higher dose 1 a day or same dose 2 a day. I asked adv and disadvantages and whether better to do 2 a day which seems intuitively like t would be better but she said it s no different. Bu what I wonder is is that a clinical test no different like the albuterol inhaler versus nebulizers which studies show no different but cfers in practice will say the nebulized version works better? Or is it truly no different? We've been doing 2 a day because I have the meds left but in the evening DS is already exhausted and bouncing off the walls as am I so ...
Source: Cystic Fibrosis Adults Forum - October 20, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
IV ball options?
Hi,
I was just curious, are there any of those IV balls (eclipse?) available for PA medicines? Specifically meropenem? Just wondering for next time I need IV's. I'd really like to be able to work during the day next time without much interruption, so I'm hoping there are options for the portable IV meds rather than the standard IV bag/pole.
Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 20, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums
question about sweat test results
Hello everyone, my 11 week old daughter was recently diagnosed with c.f. and I had a question about the sweat test.
First a little background - at 2 1/2 weeks old our ped gave us the news that our daughter's prenatal screening had found she had 2 gene mutations (the d508 one and another that only one other person has ever been diagnosed with 1331n). They then made us wait til she was 12 pounds to get the sweat test. So earlier this week we had the test done and her levels were at 102, which the doctor said was very high and definitely positive. He said that the levels don't necessarily determine how severe a person's symp...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 16, 2015 Category: Respiratory Medicine Authors: Martina Banks Tags: Newly Diagnosed Source Type: forums
