Lastest on Paige

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Registered: 10-12-2010
Lastest on Paige
Tue, 04-16-2013 - 5:13pm

Sorry I don't get on here much any more.  I'm sad to see that this board isn't getting more use.  It was so helpful to me when Paige was little, and as we're moving into new territories I'd like some advice from BTDT moms.

Anyway...Paige is almost 12 and finishing the 6th grade, where she is doing very well.  She's getting all A's and has a nice group of friends and loves her teachers.  On the health front, she's been doing great.  We are sticking hard with the twice a day nebulizing and vest treatments and her numbers are really reflecting that.  At her April 2 clinic visit she was at the 46th percentile on her BMI, and her weight is just under the 50th percentile.  We upped her enzymes to 4 with meals and we'll see if that helps her absorb more calories and gain some weight.  Her PFT numbers were GREAT for a change!  For the past 2 or 3 years we've been in a cycle where she has low numbers at her clinic visit, she takes antibiotics for 3 weeks, she has a PFT re-check and her numbers are up, we go back to clinic 2 months later and they're down again.  So at her December visit, her numbers weren't super low, but she did need an antibiotic.  The re-check in January had higher numbers and her April 2 numbers were higher than January!  Her FEV/FVC number was 127!

So that's the good news.  But we do have a couple of not-so-good, wait-and-see things too.  One is whether or not she cultures pseudomonas this month.  She cultured it last June and December but NOT September.  So she was on TOBI in June, and then in December her doctor talked to me about just starting the 28-days-on/28-days-off permanent cycle.  But TOBI adds an hour/day to her treatments so I'd really like to put that off as long as possible, so her dr agreed to just do one 28-day cycle and then see if she cultures it again at the next appt (which was April).  So far we haven't heard anything, so we're still hoping.

The second thing is that Paige had her first glucose tolerance test.  Her number was high -- 171 -- although luckily not high enough to be considered diabetes yet.  I'm sure she'll end up with CFRD one day but I'm really hoping she can get out of her teenage years first.  She hates needles so much and she hates all the CF treatments she has to go through already, I really don't want to add blood draws and insulin shots to her day.

I'm hopeful about the new Kalydeco trial, but does anyone know whether or not it would treat everything or if it just helps with lung function?



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Registered: 09-09-2000
Tue, 04-16-2013 - 8:06pm

My understanding of Kalydeco is that it helps with lung function and with weight gain. If anything is touted as a possible "cure" you would think it would address everything. The thing that makes me wonder about CFRD, however, is that CFRD is due to long-term stress on the pancreas, which something like Kalydeco wouldn't address. Just a guess, though.