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Quick Question; was your daughter specifically genetically blood tested for the CF mutations and if so do you know how many CF mutations were screened?

I hear this on the radio today. So I thought I'ld post this. I have no affiliation with them. Thought if it could help someone it would be useful. http://www.uhccf.org/apply/learn-more-about-medical-grants/grant-application-criteria/

My son is preparing to apply for college soon. He is sorting out what to write for his college essay. He has decided this year that he wants to focus on science; likely start as a Biology major. He said for his essay he wanted to write about his sister with CF; brainstorming last night. He...

Carol, Connor sounds like a wonderful,sweet little boy. So happy for you and your beautiful grandchildren. They are blessed to have you in their life...

I've struggled with this; however I know that i am very fortunate and try to instill this in our family. It could always be worse..There are kids whose parents don't love them or live in poverty etc. I did have a "down" day last week. It usually happens when my daughter health is very good...

Hi Cam, I don't know too much about culturing b.cepacia and pseudo but for MRSA there is also a drug called Zyvox which can be effective against MRSA. Just thought I would throw that out there because I did not see you mention it. Hope things get better.

Gammaw, Your post is very informative. Thank you! I had something come up recently in regard to a mouthguard for soccer. How do I clean that? It can only be be boiled for a few seconds or it will melt. I am thinking wash with soap and water and soak in alcohol. When my son without CF had...

The way our pulmonologist explained it is that they use a lot of medications they use for asthma for CF but for a different purpose. We use albuterol for a bronchodilator(i.e. pre treat before Hypersal/pulmozyme) to get it deeper in the lungs. The respiratory tract in lined with cilia which...

Vitalitymedical.com. I did not notice any smell. when our old one burned out there was an electrical smell; like burned rubber.

Yes, We have the new one. Filled out a claims reimbursement form; I've have spoken to a total of 3 reps now they are waiting on codes from the doc. We are seeing the doc 2 morrow...Just silly; her meds are thousand of dollars but they fight over a $270 machine? It's the principal...

We have the Mobilaire. I just replaced one we had for the last 4 years. It is loud but so efficient. I was on the phone for an hour the other day with our insurance co trying to get them to cover the new Mobilaire...it was quite a circular conversation. anyway never got resolved. I will...

I am looking for a few photos to download for our CF walk. In the past, to promote awareness I would use a photo of my daughter. I think she would prefer a generic photo of a logo from the CF foundation or purple ribbon and I am having trouble finding something. Help?

We do my daughter's VEST on the couch on a daily basis. I recently replaced our old couches but not for any VEST issues. She has done her VEST in all sorts of places. Airports, school, other peoples houses, hotels...Even in our truck and car.I never thought about it breaking / damaging the...

Picking up my daughter's meds @ the pharmacy today and they were asking about flu shots. At the pharmacy, they do have the some quad vaccine. My daughter is scheduled for a CF appointment next week so I was going to ask about it. For where we live regionally, I thought it was early for a flu...

:) Ah the joys of flying...Our flight got canceled(of course after we showed up after waking up at 4am)...Rescheduled for later today....Oy...I just threw the stethoscope in her med bag. I realize it does seem ridiculous. She will tell me when she it tight and wheezy...Once when she was...

So we are going on a trip to across the country . Getting ready packing, daughter with CF has a slight cold. Few coughs, did complain of a sore throat this am, went away with drinking fluids. If we were staying home I would not be concerned at all; would just keep an eye on her. But; we will...

Hi Stacey, Is that your son's only symptom?

Technically, I think you can mix Albuterol and Pulmicort to save time. We used to do that. But a pulmonologist suggested doing Pulmicort separately last after her VEST or CPT so the Pulmicort could sit in her lungs and not get coughed/beat out of her. Pulmicort helps with the inflammation so...

I would not mix Hypertonic saline in with those meds. My daughter is also on Albuterol, Pulmicort and Hypersal. We do Albuterol first; then hypersal, then VEST then Pulmicort last...time consuming yes.

We've had our Mobilaire compressor for nebs for 4 years. This morning it would not shut off. The switch on the back would not shut the machine off when switched in the off position. Anyone had this happen before? I unplugged it to shut it off. The motor is completely fine. Shows how well...