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Sierra, I have to ask. When you were giving them to her in applesauce or baby food, did she see you put the beads in the food? Or did you do it out of her sight? If she saw you do it, did you ever take a bite of them yourself in front of her and did you tell her what they are for? I can't...

That's right . . . I haven't been outright refused the basic data in written form as long as I want to wait a couple of months and pay for them. It definitely discourages it. It just really seems rather silly since the doc shows me the sheet when I'm there and discusses some of the results...

I really appreciate all the responses. It tempts me to ask if anyone has been REFUSED a copy of their PFTs at the time of testing or their clinic visit, since so far no one else appears to currently be experiencing the same difficulty that I am. To those who have asked, I have spoken to...

I just went thru all that myself. We had a pari vios that kept dying. We finally discovered that it was not designed for "heavy use," and even twice a day was considered heavy. We replaced it thru a script from our doc indicated we needed 50psi to avoid back flow problems. The 50 psi refers...

Well heck. I've never thought of that either. I would love to have that but it would be so helpful! Our clinic doesn't even call with results anymore unless it's something new or dire and they are giving a new prescription. I just get a handwritten form with a check box for labs. And I...

Stephen, can u share which clinics gave you the reports? And I've never considered asking for a printout of the CTs, xrays, labs, etc before - altho I'm not sure why! Do they give them to u automatically or do u ask for them? Most of those are generated long after u leave, so how do u get...

So far then 4 out of 5 clinics provide. Wonder if I could take a poll! How can UNC and Riley think they shouldn't give them out? But so many others do? U of M, Pittsburgh, Mass General, and wherever CFMom goes seems to treat it as a significant piece of info for the patient to have. That's...

Jshet, thanks for answering. This seems to be trending that way - giving copies to the parents as a matter of course. I thought my clinic was being ridiculous, but . . . . Would you mind telling me how it's used in discussions and how you use it?

CFMom your clinic policy sounds great. I would love to see a printout like that. Can you tell me how you personally use it? What do you find useful about it? I'm trying to build my case even beyond what I see. And yes, AboveAll, I have asked the nurses, the docs, everyone. I have suggested...

Every clinic visit for my 9 year old starts with a visit to the lab for PfTs. They print out a copy of the report with all parameters and graphs. They won't let me see it or give it to me, but they then hand carry it to the doc. The doc then shows it to me briefly if I ask for it and he does...

I just called Pari. The Vios is 32 psi and the Vios Pro is 46 psi. That's "without anything hooked up to it"! Once you hook up the Nebulizer cups, the Vios is 18 and the Pro is 23 psi. I think I remembered the numbers correctly. The warranty on both is 5 years. The Pro has a "slightly...

How funny. I've been having those same conversations this week with the Respiratory Therapist and with Pari. We've been through three or four compressors - all Pari Vios - the past 6 months. Ridiculous. But whenever I called Pari they would send out a new one overnight, then send me a prepaid...

We have seen similar Fev1 variations without intervention over a 3 month period. The pulmonologist is seeing a pattern though depending on the seasons and attributes it to an asthma/allergy type response.

How about "Inspire" for your book's title.

Gorgeous Ian. Amazing. Real people. Beautifully done. Your message about CF could be incredibly powerful. I wish you were local so I could get you to photograph my own little CFer. Don't rule out a book of littler ones.

I will send it as soon as I get home.

oh yes! It did just come through. Thank you!

Oops no. I didn't receive it!

Thank you so much! That was definitely a "duh" moment for me - I didnt consider contacting the library. I figure I won't be able to access through the library until actual publication, even though the full text copy is available online. I feel a little pressed for time to get it, since the...

I just posted this in another threat too - but thought it would be useful here: Aha! Interesting article about to be published in the Journal of Cystic Fibrosis. It appears they have documented a correlation between lung pathogens and those found in the sinuses. And have experimented with...