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2 month old
Cystic Fibrosis
2 Views 0 Answers
My 2 month old grandson is not keeping down his food and gaining weight, like they want him too. If he doesn't gain weight by the end of the week, they say the may want to start tube feeding him. We know nothing about this yet , but have a feeling we're about to find out. My question is, Is there...

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2 month old
Cystic Fibrosis
2 Views 0 Answers
My 2 month old grandson is not keeping down his food and gaining weight, like they want him too. If he doesn't gain weight by the end of the week, they say the may want to start tube feeding him. We know nothing about this yet , but have a feeling we're about to find out. My question is, Is there...

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2 Views 0 Answers
My husband and I have been on a few cruises. There are no heat sources, microwaves, etc available in any state rooms due to the fire hazard these things pose. My son has CF and we'd like to take him on a cruise one day but I wonder how we're supposed to sterilize his nebulizer and PEP after each use...

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795 Views 0 Answers
Hello all, As some of you probably do, I have a lot of sinus-related problems due to my CF. This started as I was around 15-16 and I feel like it's just getting worse. I had an operation 5 years ago to remove polyps, but a recent CT showed I might have some more, and a lot of inflammation obviousl...

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277 Views 0 Answers
https://goo.gl/forms/1u9ydx6qcKQxeIU92 Hi guys! I am doing a research paper on the correlation between chronic illness and risk taking activity in teens, and have a short survey that I need people to take! Everything is completely anonymous and questions are optional, so if anything makes you unc...

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296 Views 0 Answers
Ammonia levels in blood--my son's blood ammonia level is continuing to stay elevated (range goes 13-34) and his is now at 66 and a few months ago it was at 70. He has cirrhosis and has started to develop varices but has not had banding done or any bleeding from it. He is 16. At what point should I b...

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54 Views 0 Answers
Has anyone followed this? http://dutchmagicfactory.blogspot.ie We will be started it in the next few weeks (second time - last time we had difficulty sourcing the correct strenghts) thanks Kate

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Orkambi
Medicines
778 Views 2 Answers
My 7 year old son started taking Orkambi in November. I have to say I have not seen any major changes in him overall. He is a pretty healthy, average 7 year old. His main issue has always been weight gain. I had seen where some had experienced a good weight gain once they started orkambi, but his we...

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418 Views 2 Answers
hey yall. Are there any tricks I should know about when traveling to pack meds/treatments? Also what do y'all do when you fly? Heading to AZ this summer for a vacation and just looking into doing some new things to make airport security not so annoying/easy. Thank you!!

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374 Views 2 Answers
My daughter cultured PA. She is currently on Bethkis, but it has destroyed her voice. She is a singer and had to pull out of a solo at her concert. She was not happy. Has anyone that switched to the Tobi inhaler noticed less issues with your or your child's voice or hoarseness? Any suggestions on h...

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