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My daughter wasn't diagnosed until she was 8, so I don't know at what age they normally start. She does her PFT's in the exam room. The RT has a handheld device and the test is given without bronchodilators. She normally does 3 blows, but if there was a problem with one she may have to do an...

My daughter has been on Pulmozyme twice daily for about 2 years. She had a rough year, dropping from over 110%PFT to PFTs in the 80%'s. She started inhaled Vanco and later her doctor increased Pulmozyme to twice a day. It has taken a while but her PFT's are now over 100% and she is no longer...

My heart aches for Jane and her family. Sending my prayers.

You probably only had a screening of the most common genes, not a full genetic test. So it is possible that you are actually a carrier. There are nearly 2000 mutations and most screening test only screen for 25-100 of the most common ones. But you are correct, you would need to be a carrier for...

I used this product http://www.rei.com/product/736217/buff-high-uv-protection-buff when I was undergoing radiation treatment and needed to protect my face/neck area. In case the link doesn't work it is a Buff from REI, you can do a search and find it. It has UV protection in the cloth. I tried...

You fought a good fight, rest with Jesus now Rami.

You should contact the CF Legal Hotline about the Social Security. I don't know if they deal with trusts. http://www.cff.org/livingwithcf/assistanceresources/cflegalhotline/

So sorry to hear what you have been going through. But to answer your question, people have "passed" the sweat test and then it is later confirmed through DNA that they do have CF. Hopefully someone else will chime in here about other disorders to check out. I know some have been mentioned on...

And to block someone... Click on setting on the top right of the page. Click on edit ignore list on the left hand side of the page Type in use name you want to ignore then click Okay

Sorry I can't remember your first post so don't quite know the whole story. My daughter has had one bronch. She did well for many years (not hospitalized until she was 14) but then her lung function dropped ended up inpatient lung function came again and then dropped later that same year. 2nd...

So sorry for your loss. I can't imagine the heartbreak you are going through. You and your family will be in my prayers.

2roses, Thanks for thinking about that but we have checked into that. We would have to sign up during the open enrollment period, and we can get coverage but we would not qualify for any subsidies (even if income is within the limit). So my daughter and I signed up for it starting this January...

I don't have any personal experience with this but remember something from a different thread regarding this. Make a daily log of everything you have to do to maintain your health. Include treatment times, how long it takes for cleaning and sterilizing equipment, how often you have dr visits...

Sarah, glad you have some doctors that are taking this seriously. Hopefully they will find out what is really going on and that your son will get the treatments he needs.

fel, I think there are more bizarre situation out there than most doctors are willing to acknowledge. I don't think it would be odd for you to be diagnosed late with mild symptoms. We went down that road with my husband after my daughters diagnosis. He had been through the allergy/asthma...

Wow this is a strange situation. Each of your sons has a CF mutation (2 different mutations) and then an unknown mutation. That would mean 3 different mutations in the family, which would mean that either you or your husband also has 2 CF mutations! Do either of you have any symptoms? It is...

Have you tried to CF legal hotline? http://www.cff.org/livingwithcf/assistanceresources/cflegalhotline/ And I copied this information from a different thread. The number for the CF Legal Information Hotline is 1-800-622-0385. Or email CFLegal@sufianpassamano.com All contacts are free and...

Tacos (or taco salad), spaghetti, chicken with stuffing bake, crock pot roast... Even when we are not sick we get tired of the same old things. I'm not much of a cook so this will be interesting. My girls have varying tastes so it is hard to find something everyone enjoys.

I looked on these sites (linked below), I did not see your daughters 1st mutation (thus it not being known previously). http://www.genet.sickkids.on.ca/cftr/app http://www.hopkinsmedicine.org/cfgenotyping/database.htm http://www.cftr2.org/faq.php I probably won't be much help and this will be...

Nikole, I don't mind at all. She actually is double Df508. Looking back, she always did show symptoms but they didn't trigger any concerns because she just took after her dad. Round body, skinny arms...my husband's brother called him an olive with 4 toothpicks sticking. He was always the...