Recent content by CFSanDiego

Hi. My daughter (10) is being treated currently and she has cf as well. You can email me at cfmissouri@gmail.com if you wish.

For what its worth, I have a 7 year old and we live in San Diego. I was not happy with the care here so we have been going via plane every 3 months to Stanford pediatric CF clinic and it is wonderful. My daughter's doctor is Dr. Milla who did indeed come from U of M. He is very well...

Southern California! Millers Long beach is a great clinic and you can get year-round outdoor exercise. Surfing, swimming, running, bicycling, soccer....all great to clear the lungs.

My daughter's doctor put her on nebulized colistin, 75 miligrams. She is on a 6th month straight protocol to try to eradicate. I know of another who alternates tobi/colistin every other month....

My daughter's sweat test was 58. These mutations are both tested for in the 32 mutation panel and are known disease causing mutations. Please join the Facebook group. There are many adults on there who can help you. If you want to pm me your phone number I can call to discuss. Otherwise just...

Hi. My daughter (6) has these mutations. She is pancreatic sufficient. We did not know she had cf until she was 3. The only reason we found out was because we were going to try to have another baby and my new obgyn had us carrier tested. We rushed her in for testing and found out she was...

Thanks for sharing. I hadn't seen this article but our instructions are to mix right before use then throw remainder away. I am a little concerned they didn't further emphasize the risks of this drug, especially after it "cooks" for so long.

Hi. The filter problem was mine, and it was a huge problem. However, I finally contacted the manufacturer and got them to get 10 for me. My advice would be for you to ask the company selling the compressor to you if they have replacements. I found a few companies actually had the filter but...

My daughter just started this for a 6 month eradication protocol of pseudomonas. The gave us the eflow treo nebulizer to go with it. She is prescribed 75 mg/3ml morning and night. She is sooooo picky that if it tasted really bad she would show it. Only takes 4 minutes to nebulize. Super...

Hi. She was diagnosed at 3. No symptoms, clear culture. Long story but we were lucky we found out I guess. I knew something was wrong for 2 months. She ha recurrent ear I devotions that wouldn't clear with antibiotics and then green goo coming out of her eyes. The cf dr didn't take me seriously...

Sorry, wasn't finished. Dr speculated she had reactive airways from all the infections and Flovent relieved the inflammation. Now we only use Flovent when she has a nasty bronchial cold, and her pfts are staying up. Maybe you should give Flovent a try. Do you also use a xopanex or albuterol to...

Hi. So sorry you are going through so much! My daughter (6) is constantly getting viruses. I think she will go a few days between each cold before the next one kicks in. That just seems to be he natural of going to school, all the kids are always sick, but it does take my daughter longer to get...

Hi Nocode. Thanks for your reply. The difference between mucoid and non-mucoid is that mucoid has the biofilm that is harder to penetrate with antibiotics (from what I understand). My daughter's is currently non-mucoid which means anitibiotics can beat it back a little better, but over time...

Aboveallislove, thanks for the suggestion. I have been considering Kalydeco. I need to get her Dr. on board. I really respect him (Dr. Milla, Stanford). Nocode, thanks for responding. I am sorry things have progressed so far for you but glad you are managing ok. Can I ask, how progressed...

Ok, I know pancreatic sufficiency isn't supposed to predict lung involvement, but thought I'd ask anyway, since in theory secretions are at least a little easier to clear due to some cftr function. My daughter (6) has had pa since December and we can't get rid of it, although it has been I was...