Molly

[tce...@cox.net]

Hi everyone,

I just wanted to pop in and let everyone know how things went in CA for us. We went out for a 2 days trip and came home 14 days and a lung surgery later. Molly has been diagnosed with Cystic Fibrosis in addition to her PIDD and it is not good. Her blood was sent to a genetics lab back east to identify the type of CF she has, but her sweat test was positive for CF. On a good not, her Xrays done the day before we came home looked much better. She has a great deal of fibrosing in her lower lobes as they were only able to get a return of 2 cc on a 30cc wash. He PFTs were not terrible....they were not good either and showed obstructive disease. Please keep her in your prayers as this drastically changes the outlook for her and we have no idea how the PIDD will impact her CF. Once the tests are back, we will be taking her to Universty of MN for followup.

Terri

[valarie k]

Im sorry, Terri........has Maggie been tested as well? I know its really hard.......but it will be better to know now, and be able to treat her properly. CF isnt the horrid dx it used to be, though I know its complicated by her PID. They've come a long, long way in treatment.......on a group I moderate, a mom of seven children has three with CF. I know  you'll dig into researching how best to help her and find the best drs and treatment for your little girl. Keep us posted.

valarie

tce...@cox.net wrote:

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[tce...@cox.net]

Maggiie has not been tested.....but definately will be. She does not have the lung issues that Molly has, but has the GI symptoms that COULD go along with it. We are not getting ourselves worked up yet as we want to wait to see how the genetic tests come back.

Thanks
Terri

> ---------------------------------

[Pattie Curran]

Sending lots of prayers. Did they start her on pancreatic enzymes? The
disease my boys have is a lot like CF--- SDS is the second most common cause
of pancreatic insufficiency and CF is the first. Have you contacted the
CF Foundation? They have a lot of great literature. www.cff.org

Peace be with you,
Pattie
Four steps to achievement: Plan purposefully. Prepare prayerfully. Proceed
positively. Pursue persistently. ~William A Ward