Search results

Question: Do they have the results from the Kayldeco trial done in Denver? My son has a mutation on the list (1898+1G>A). I'm very curious on what they found. If you know a link to results, could you please share. Thanks!

We try our best to keep our backyard perfect for our children to play in. Yet, still they find places to dig up "dinosaur fossils" & every kind of creepy crawler. Last year my son & his Kindergarten friends really got into digging at recess. Fossil hunters!! This year his PE teacher had my son...

Hi there, my name is Sarah. I have a little boy named Johnny who has cystic fibrosis. I'd love to chat with you:) When I first found out about our son having CF, my world stopped. I couldn't breathe:( Talking to other CF moms helped. Sarah My best advise is to try and remember who you are...

Hi there, I hope all of you had an awesome Halloween. We sure did. I'm a little worried about my son. We gave mercy on him this morning & let him skip Kindergareten to recover from the madness. Here's what's going on. The last week my son has had the worst stinky-stinky bad smelling gas...

Hi there, My son just turned #6, and is staring full day Kindergarten next week. My son did 2 years at public-elementary based pre-school. So, I've had a few years dealing with the public school system. I found Lisa Greens 504 planning website awesome! I used much of her tips writing my sons...

I hope this was just a fluke too. I'm glad he isn't having any pain & soft tummy. When my son had his complications from his meconium ileus surgery, his tummy hurt so badly:( Keep us posted. I hope he an awesome 1st Day! Big Hugs! Sarah

Hi there, Great news today:) Johnny's recent culture came back with just normal Flora. No pseudomonas!! Thought I'd share:) sarah

Have any of you ever had a pet Taranchula? My lil man is turning #6, next month. I can't believe I'm even considering this:) I've been doing my reading on them. Curious if any of you have had one for a pet. Love any input. I don't see "it" causing a germy nasty issue. If I have "it's" home...

Thanks everyone for calming me down:) I also spoke to a nurse at my sons CF Clinic today. She reassured me they don't normally admit, but if "it" shows up they will throw more Tobi at it. I feel like we can calm down now. The last couple weeks I've been running around getting things prepared...

Hi there, My son is almost done w-his 1st round of Tobi. He also finished Cipro Friday. He cultured Pseudomonas at his last culture. My question is there anything I can do a head to setup home IV nurse care ahead of time? I'm praying like crazy he kicks it, but I always feel better if I have...

Hi there, My son who is almost 6 cultured pseudomonas for the 1st time last week. Adjusting to the extra treatments and tobi is taking some getting use to. My son has also been taking swimming lessons in a public community center pool for the last year. We have made many changes to try to...

Well, my lil man grew Pseudomonas for the first time. I got the massage yesterday. Very tough day:( Johnny also graduated from Pre-School yesterday. Spent the last month working on his IEP. Thats all finally settled. Many emotions running through us. I spent today fighting with our insurance...

Thank you so much for your responses. The doctor told me months ago that they are very aggressive fighting Pseudomonas. Typically one month of Tobi & 3 weeks w-Cipro. Then another culture in a month, and then put inpatient for IV antibotics if it doesn't clear:( I spent the day fighting...

Hi there, Well, Johnny's throat culture came back with Pseudomonas. It's the first time he has cultured it. The doctor left a message on our phone saying a bunch of big words, and then added this strain is the "Good one to get". He sounds confident that we might have a chance on knocking it...

Hi Everyone, Quick question on planning out the upcoming school year. My son may be attending all day Kindergarten, and I have all the literature prepared. Been reading about 504's since the day we brought him has a baby. We have had IEP meetings in the past during PRE K. So, i'm prepared I...

Morning: Source CF Vitamin, 1,200 IU Vitamin D, Prevacid AM Treatment: 2 Puffs of albuterol & Nebulized Hypertonic Saline 7% & 30 mins of Vest, Followed by 2 squirts of Flonase in each nostril. PM: 2 Puffs albuterol & 30 mins of Vest & Nebulized Pulmozyme *We add lots more of Vest during colds...

Hi Guys, I hope all of you had a great Easter. We had a beautiful Easter, I got the honor of hosting both sides of the family again this year. My in laws brought baby chicks:) What a mess!!! LOL The kids enjoyed them though:) The chicks left today to a farm. We had CF clinic yesterday &...

Hi there, I'm a stay at home Mom, and had planned to be long before we knew are child had CF. CF wasn't the reason I chose to stay home. I've met many awesome CF families with both working parents. I give those parents allot of respect. I think it's completely up to you and what's best for...

My #1 Fat Girl Trick this month, is waffles w/peanut butter & butter & syrup. My son also won't go for anything other than Carnation Instant Breakfast w/whole milk. I add some chocolate syrup most the time to boost the calories. I found these crackers he likes & cover them w/cream cheese. I add...

I'm defiantly going to order one for my little Superhero;) Thank You!! sarah mommy to Johnny 5 w/cf & Bailey 3 no cf