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Thanks so much for sharing! Very exciting stuff! maybe we should let them know to instruct the video guys to focus on the slide shows more and speaker less...;)

Put your mind at rest and push for thorough testing. There are people with CF who had *normal* sweat tests, and I can say, my daughter had a *positive* sweat test & she isn't even a carrier! The sweat test isn't everything. I would find a doctor who would recommend a complete genetic screening test.

Very pricey, but very effective and fantastically fast is the eflow. http://www.cffatboy.com/2010/04/why-you-need-an-eflow-a-k-a-trio-and-altera/ It is quiet, light weight and runs on batteries (can also be plugged in). Get it insured and you'll be so happy. MUCH less treatment time. Maybe your...

The biggest thing is finding something he enjoys. My sons enjoy cycling. One works out with weights, also. I try to get my 9 yr old to jump on the trampoline for a while. We watched these videos (just kept going down the you tube list) and they have inspired the kids to jump rope more...

Have the doctors ever cultured their sputum? It might be worth pushing for that. It can be very revealing.

Have they tested your kids' pancreas funtions? It is possible to have CF with a neg. sweat test result. (My kids are "pancreatic sufficient".) Your baby sounds too sick to just leave it at that. I'm all for second opinions. Can you get to a proper CFF accredited CF center? "Heterozygous"...

Why is the 2nd gene mysterious? Can you do a full genetic screening? You may qualify for some amazing new drugs available to almost "cure" CF. It is worth digging deeper. My son, aged 21, was only diagnosed (last year) because of his sister. He has awesome lung functions and is in great shape...

good referenced:http://www.cfmedicine.com/history/topics/sweattest.htm

Our dietician said it's very important to add salt, especially in the summer. Dehydration is a big concern along with loss of electrolytes/salt. She said it could lead to a blockage. I checked my kids salt level in their blood test and it was in the low normal. It definitely needs monitering.

I would love an explanation also. I tested positive as well as one of my kids with "my" mutation and one of my kids with *no* CF mutation. All of us were over 70. I have hypothyroidism, but they are normal. The one with no mutations coughed this entire winter and apparantly has asthma. (we...

My kids have W1282X and 3849+10kbC>T and they are all over 100% pred FEV1 (technically this is "normal", but they all have brochiectasis). My 16 year old daughter got the mumps at 14 and shortly afterwards started coughing. It took us a year to get the CF diagnosis and her FEV1 was around 75%...

nebbing with a mask I just wanted to mention that the staff at my clinic encourage using the mouth piece to get the max amount of medicine to the lungs. Our doctor recommended having the child breathe OUT through his nose when using the mouthpiece. That sounds ideal because then everything is...

I just wanted to add that here in Israel the standard genetic test is for 14 mutations. There are over 1900. In such a case, it is possible to get back a false negative because 14 is so few. If your health plan won't cover a full sequencing, and you get back a negative result, it would be worth...

I hope you continue to feel well. CF is a sneaky disease and you can feel great while all kinds of distructive things are going on inside. Please talk to your doctors and CF team, that is what they are there for. Be open and straight. My 21 yr old son is doing great with PFT's around 130%. My...

I am in Israel. I know of someone who sent their blood sample overseas for the full sequencing. don't know how you would do it there. It must be quite expensive. The bottom line is you have to treat those ugly bugs in your lungs and it is worth going to the best specialist (ideally, a CF...

I don't have CF but I have been through a lot of pregnancies. I always joked that I didn't need a blood test because I have my sofa! I struggled with exhaustion and didn't have too many issues with nausea. Never threw up. It is hard work making a human being, but certainly worth it! Good luck!

Our nurse explained to us that PA likes water, so it is often found around the faucets, showers, just water sitting around... When my kids were first diagnosed last year, the 2 older ones had staph, but the 8 yr old had staph AND PA. We did what they called the "elimination protocol" and, thank...

I have been afraid to put mine in our sterilizer (it's the kind that goes into the microwave). The instructions seemed to rule it out as an option. Has anyone used this kind of sterilizer and is it really OK? I put the mask in a sealed container that is filled with 70% alcohol and leave it...

From what I understand, vinegar doesn't kill enough bugs. We use a baby bottle sterilizer and it is really no big deal. After we wash and rinse the nebulizers, they get put in the sterilizer (mine is made for the microwave) and they are *sterile* after 8 minutes. Now that I have an e flow, I...

I ask the secretary at our clinic to e mail me the lab results. That seems to be working. I just have to remember to call and ask. As far as lab stuff, the doctor explained to me that they process the sputum cultures in a special way that the regular labs don't do. Are you sure your lab is...