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This made me think of something I had read on these boards before. Dump the contents of her diaper in the toilet. If it floats, it may mean that there is a high fat content... if it sinks, the fat is likely being absorbed. My daughter has to describe to the doctor what her poops have been like...

My husband had to have the DNA sequencing done several years ago, and I believe the cost would have been about $3000 if insurance had not covered it.

I'm sorry the doctor even mentioned CF if they were not at the point to actually test for it! Who wants to hear, "your child might have CF, let's wait and see"? I thought the doctor was already pursuing testing. But yes, sweat testing can produce a false negative. And without significant...

I am not totally familiar with newborn screening, but this is my understanding. It varies by state in how they screen for CF. Some screen for a certain enzyme in the blood that can be elevated that triggers a DNA screening, and some states go straight to the DNA screening. This means they test...

Has he had IgE levels tested recently? Our daughters is checked annually and they did come back elevated. This indicates that she is having an allergic reaction to something, but we have not noticed any other allergy symptoms. So now we are in the process of further testing. Her highest FEV1...

I must be blind. I never noticed the thumbs up before. I guess I speed read too much. I was even reading a post the other day and thought, "I wish there was a like button"...lol. I tried to give a thumbs up too, and it turned into a red thumbs down. Great idea! The one concern I would have is...

Stanford University Medical Center Stanford University (ADULT) Palo Alto, CA 94305 Appointments: (650) 723-6381 Director(s): Paul Mohabir, M.D. Stanford University Medical Center (PEDIATRIC) Palo Alto, CA 94304 Appointments: (650) 497-8845 Director(s): Carlos E. Milla, M.D., Richard Moss...

What state do you live in? What major city is near you? http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/ You can go to the above link for the Cystic Fibrosis Care Center Network and find the centers closest to you.

I did a quick search on eBay and found used vest machines listed from $1100 to $3000

I totally understand about the privacy! Hopefully it is just a misunderstanding and it can be worked out. Especially since she doesn't need to do "medication" out side of the nurses office.

For some reason I can't get on the CF Foundation website to verify if this is current information (edit...was able to verify this is correct) Cystic Fibrosis Legal Information Hotline (800) 622-0385 CFLegal@cff.org link to the web page...

Not sure about that. But it would sadden me if something could not be worked out with no cost. Is your child old enough to set-up and do her treatment on her own? Or are they going to want a nurse there to do the medical stuff? Surely there could be an administrator, secretary...that could sit...

Unless they receive federal funding, I do not believe that 504 regulation applies to them. As far as the cost, unless they receive federal/state funding to cover specific accommodations, I would think that the parents would be responsible. What kind of accommodations are you seeking? In a...

It is currently on Netflix in the USA. I don't know if you have netflix in the UK, or if they would even have the same content. But, it might be worth looking into.

We have the Electro Flo Percussor 5000 by Med Systems. We were able to have a free trial before we purchased it. It is not used everyday (both my daughter and my husband use the vest daily), but it is used when we know there is an specific area we want to target or when we go on trips (so we...

I just received an email from CFRI today about scholarships. Here is a link... http://www.cfri.org/scholarship.shtml Hope it helps.

We don't use cayston, so I don't know if these would work. https://www.vialcrimper.com/Vial_Decapper_Pliers_20mm.html I use this type of plier to remove the metal ring off of vanco bottles. But the vanco bottles have a solid ring, what you guys seems to be describing is a metal ring with a pull...

Great, thanks. I'll email you right now.

I wouldn't mind getting one for Sarah. We had one years ago, but it stopped working. Happy New Year!

Yes, our cycle is always around 20 minutes because I add more water than the instructions say. Since it steams until the water is gone, the more water you add the longer the cycle. I'm not sure what model but it is a couple years old. It is round and tall (has 2 "layers").