Search results

Sounds like he is already on a nasal steroid; Nasonex. If he is coughing and this is not his norm; he may have gotten a cold or virus? Has he had a recent culture? I would call the CF doctor if you are concerned about the cough..Might have picked something up. What is VBS?

Thank you. She did her voice lessons yesterday; but did not sing; they just went over reading music. She is frustrated. She has a very pretty voice , loves to sing and can not. Rest is the best thing. SHe does have nasal polyps; I hope she does not have them on her vocal cords as well:(...

My daughter 10 with CF seems very hoarse/lost voice. She recently got over a cold. Any ideas to help? I've given her honey, losenges, mints. We always encourage fluids. She has voice lessons today; think this would help or hurt? She refuses to cancel them.

Oh, and try not to worry too much; he is only slightly above normal :) My daughter was fine getting her fingerstick done; but she has no fear of needles. The needles are very tiny for fingersticks. Our kids go through so much; I felt so bad to be sticking her 2-3 times a day(I'm not doing...

My daughter had her first GTT this year too. I had suspected she had some blood sugar issues because we have to use prednisone in bursts on occasion when she has an exacerbation. Anyhow, My daughter has "impaired glucose tolerance". Her fasting was 102. She was 87 2 hours AFTER drinking...

I agree with bringing the baby in to see the CF doctor. Are you doing extra Chest PT and breathing treatments?

My daughter had a reaction to the antibiotic she was on; so we had to infuse it slowly; when they tried to have it infuse over one hour she got very flushed. If we infused it slowly over 2 hours; then she did not have a problem. So yes, we did her antibiotic at 6am; 2pm and 10pm. I would try...

I am unconcerned about breathing in my daughter's nebs. I have heard for TOBI at hospitals of them using special filters to prevent the proliferation of hospital aquired resistant bacteria. That's a good protocol in my mind.

It seems like whenever she finishes her antibiotics; then next day she gets yet another cold. We went to her CF appointment last week; had 2 days left of her hard core anti. Her PFT's were great. Lungs clear. Fabulous. Picked up a nasal cold at school. :(....Really? She has 2 days of...

My daughter had a PICC line when she was 2 1/2 over the summer. We did not do water activities with the PICC. She did go to her sing along playgroup(it was a mommy and me type thing). I honestly don't remember exactly what we did. The IV antibiotic tied us down in that it was every 8 hours...

Another thought is; do you live in a location that is hot and humid where you are sweating alot and excreting salt? Our family lives in a relatively cold environment. My daughter w/cf was born in the winter and she was exclusively breastfed. I was told to give her her CF liquid vitamin and...

http://www.cnn.com/video/data/2.0/video/health/2013/06/06/pkg-carroll-lung-transplant-ruling.cnn.html

Heidikk, I have a older teenager with no CF. I use my philosophy of parenting with him a a guideline. If I would let my non CF child do such and such then I will let my CF child do the same...this excludes hot tubs and scuba diving :)...I would not like a stranger to touch my non CF child so...

We went through something similar when my daughter was 2 1/2. She did not have sinus surgery but did have a bronchi and PICC line. It was not necessarily a planned procedure when it happened to us so we just did the best we could. If it makes you feel any better; my daughter does not have bad...

Welcome. Your baby's growth is great. It can be overwhelming. This is a great place for support; someone here has been through the same thing. My daughter is now 10 1/2 years old with CF. Any questions; ask away.

Just want to say, I think she should be in the honors classes as well. You can always back off if it is too much. My son is finishing up his first year of high school and has been in a couple honors classes; and those are his favorites(he does not have CF). He is in with good, smart kids...

I would say they can and should! Jumping up and down in a bounce house is fun and great for the lungs.

I tried to reply to you but my response didn't post, so here goes again! I am so sorry your baby has CF. Cystic Fibrosis treatment has changed over the years due to all the wonderful CF doctors and researchers and us families advocating for our loved ones.. The goal is to keep your baby's...

Thank you for your input. My daughter puts up with alot from her CF so I don't want to overreact. She needs to be respectful to adults, however. I was a terrible preteen. So far she is much better than I was, just want to keep it that way ;) I do think talking to a someone with CF would...

My daughter is 10 and a half with CF. She is fairly mature for her age, since she has been dealing with CF since birth; she is a good kid, smart and handles CF with grace. However, she is developing just a slight attitude. I noticed at her last CF appointment(we saw NOT her usual doc), my...