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Anyone have a vest machine get a layer of soot from a house fire. We had a small fire and no one was injured, but the vest machine happened to be in the family room attached to the kitchen and has a layer of grey soot on it. The fire clean up team came out that the home insurance company sent...

My daughter, currently in 8th grade, wants to join the band for high school and this will require her to go to overnight band camp. I was not in the band and so I know nothing about the overnight camp. What should I know to be prepared? Did anyone of you or your children take a vest and...

How does a person get DNA sequencing done? My understanding is this tests for all mutations even if the consequence of the mutation is unknown. Is this what the full Quest testing including duplications and deletions does? Is this what Ambry's full testing including deletions and duplications...

I think my hearing has gotten worse recently. What are the causes of hearing loss with CF? I know certain antibiotics are ototoxic. What about Azythromycin 3 days weekly can that cause hearing loss? Can sinus infections cause hearing loss without ear pain or ear infection? Is it likely...

I was recently diagnosed with CF as an adult and I have seen ENTs over the years for chronic sinusitis and repeats infections. My Cf pulmonologist referred me to the ENT that many of the other CF patients see. What should expect at this appointment. I have a horrible fear of the unknown. Is...

Anyone using Tricare military insurance? We have had Tricare Prime and will be required to switch to Tricare Reserve Select. Anyone buy a supplemental insurance? What is the catch regarding supplemental insurance? Does the supplemental insurance you have cover Durable Medical Equipment. We...

When you or your child is sick who do you call? Do you call your pediatrician? Do you call the CF pulmonologist? What about ENT? I am diagnosed with CF my daughter age 13 remains in diagnostic limbo. For myself I just Email my CF team any questions and they are always helpful. For my...

I have a diferent question. How do you know you are each carriers and that neither of you have CF. I found out I have CF because both of my children had genetic testing due to illness. They both came back with 1 genetic mutation that causes CF. However, since they each have different...

I am going to endocrinology tomorrow. My CF pulmonologist sent me to the endocrinologist who sees CF patients at the same hospital (CFF accredited center). I have a rare thyroid condition that can affect blood sugar. I was wondering if my blood sugar may also be affected by my CF. I am...

My daughter is 12 and in CF diagnostic limbo for 18 months. I have CF. Her PFTs 18 months ago were FEV1 55% and FEF 25-75 was 28%. A year later her FEV1 was 111% and her FEF 25-75 was 115% thanks to teh best doctor and to her vest and hypersal and antibiotics. However, at her clinic appointment...

I am 36 years old and I was diagnosed with CF yesterday. It explains all of my symptoms. Has anyone else been diagnosed because of their children's testing. each of my children have a different mutation and apparently they both came from me verses my husband.

Looking at my insurance website I read adult women's sweat test results can varry greatly depending on the time of the month compared to her menstrual cycle. Has anyone heard of this? Have you redone sweat tests with very different results? Do clinical trials consider this for before and after...

I read on my insurance website about adult women's sweat test results changing greatly depending ont the time of the month compared to her menstrual cycle. does anyone know about this?

So in my family we have hada shocking turn of events. My daughter 12 is still in Cf diagnostic limbo. She is treated for CF. In an attempt to get our insurance to pay for an Ambry genetic test for my daughter I asked my doctor to put in for the Ambry test for me. My thought was my daughter's...

Many of you may have noticed I have been posting on here for over a year. My 12 year old has been in CF diagnostic limbo since Christmas 2010. Does anyone have any ideas what else she should be tested for. She is negative for PCD, immunology is perfect, and no allergies at all. She does have...

I have seen a few different posts recently about toddlers and improving cooperation for treatments. I cleaned out the medical cabinet and found 3 dinosaur masks in their original sealed bags. If these would help anyone with a toddler you are welcome to have them. Send me a PM if you are interested.

I have been trying to become a more knowledgable advocate for my daughter and came across this website. It is not a .edu .gov etc. website. Can anyone with a better understanding of PFTs tell me if this worksheet makes sense to them? <a...

We have traveled within the United States with my daughter's Hill Rom 105 vest and we want to travel to Japan for Spring break. I read many of the travel postings and I am confident that the vest will fit on the plane. Has anyone taken the Hill Rom 105 vest on a bullet train in Japan. I read...

I have seen many posts regarding unexplianed (CF-related) joint pain. As some of you know my 12 year old has remaned in Cf diagnostic limbo for over a year now. Meanwhile, she was was recently diagnosed with Ehlers Dianlos Syndrome-Hypermobile Type III. This does not explain her lung symptoms...

I am wondering after a child is diagnosed with CF did any of the parents then find out that they too had CF. I think I have read at least one story on the forum like this. I have one child with G542X and one child with a 5T variant. After reading the carriers with symptoms posting recently I...