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Interesting. DS was on TPN for about 5 weeks - absolutely fried his little liver. He jaundiced rapidly after release and became very very sick. He was readmitted for surgery to flush his liver of the clogged sticky mucous and the TPN. Makes me wonder if they suspect CF at birth, isn't there...
My child had his gallbladder removed at 3 MONTHS old - he already had gallstones! Incredible, but the surgeon said he figured he might as well take his gallbladder out while he was in there flushing his clogged liver since it would doubtlessly wind up giving him pain and need to be removed...
Cam, every exacerbation feels like a threat to your life expectancy, doesn't it. Only your docs can help you determine the extent to which you can bounce back from this hospitalization. And sometimes they just can't tell either. Hopefully your PFTs are improving, but I've always found that...
Hi Cam. I'm sorry sinus surgery has been so difficult for you before. We've had three on this end already at 10 years of age, but none of them sound as bad as you experienced. However, the first one was the worst for bleeding. So hopefully if you need another, it will be a lot simpler and...
Ok guys. I have a 10 year old who would eat nothing but bacon, pancakes and biscuits bathed in honey if he could And as many Boosts he could get his hands on. Chocolate flavored of course. Tell me what you eat in a day!
Hi Twist. You lost me. Processed sugars - bad. Understood. Processed fats - bad, and natural fats and sugars - good. I get that too. I also understand the type 1 diabetes like process that can result in CFRD - that's it's not so much the diet but the CF pancreas malfunctioning. However I...
I asked our nutritionist once if eating all this high calorie, high fat junk wouldn't make CFRD more likely. She said No. She explained that CFRD is more like Type 1 diabetes, rather than diet induced Type 2. Interesting. Maybe others can explain this for us all a little better.
As for weight loss Cam, everytime my little guy gets sick, his appetite goes down and he loses weight - unless they put him on prednisone in which case I have to serve food with a shovel! So I keep his weight a little high anymore, which thankfully has become possible. The docs call his extra...
Hi Cam. We're praying for your quick recovery. I haven't experienced pleurisy in connection with CF, but I had it myself around your age. It's a painful inflammation of the membrane surrounding the lungs. It can cause sharp pains when breathing. I believe it's usually caused by viral or...
Hi Benthyr123. The Vibralung was approved by the FDA last year. There was a thread at that time you might find interesting that discussed the mechanism and benefits including responses by a manufacturer's representative...
What great feedback you're getting Dot! I have to say that I watch the RT's every move with my little guy. It seems that most of them are not from the same RT group that does the testing/vest fitting/ etc during CF Clinic days. Instead they seem to be a group of RT's that work with all the...
This is a recurrent question. The most clearly dangerous source appears to be hot tubs and spas - the higher temperature makes for a perfect petri dish. Other water sources are pretty universally recognized as posing a risk - including showers (especially the shower heads), tubs and sinks...
Our school system will not allow children to carry their meds with them, including enzymes. So ever since daycare, I either go on the field trip, or give a bottle directly to the teacher with a reminder. If I don't personally drop off, I will send a prescription bottle with the packed lunch...
Angela - prayer said for you! I don't know anyone who hasn't suffered the pain of a breakup. It doesn't make it better but it is understood and felt by all. It flat out hurts! But I will say this - he not only left your relationship, which can happen without fault on anyone's part. But he...
AboveAll - thanks for the helpful OSHA link. I hope you don't mind me posting some of the details here, for ease of reading. The OSHA summary distinguishes between "respirators" (those hard mask coverings for the nose and mouth) and "surgical masks" (the masks we don at the CF Clinics). It...
Lisa - I am so shocked and sad. I can only imagine how devastated you all are. You and your children have always been such an inspiration and help to our family. God Bless You and fill you all with the peace that only the Holy Spirit can give. May you feel the arms of our Lord around you and...
Hi Dot. Here's the link to this forum's discussion on the effectiveness of baby bottle sterilizers. I hope we've helped!
http://forum.cysticfibrosis.com/threads/67666-Sterilizing-with-an-Avent-steam-sterilizer
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