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Our RT has come in and "quizzed" my daughter on her nebulized meds; the order they are given, names, and what they do and are for. He did that a few years ago and was very impressed she knew them all and what they do. He encourages my daughter to do her nebs herself instead of ME doing...

Small medicine cups to open enzyme capsules into(I had to give half a cap for each feeding) Little percussor cups for chest pt(more than one) All the usual baby stuff; cloth diapers for spit up I had a hospital grade breast pump I bought(helpful as my daughter had 2 serious situations as a...

Sputum Culture results do not come back the same day. It takes at least 48 hours for the preliminary report; for example gram negative or gram positive bacteria. Then up to 5-7 days for the type of bacteria and sensitivities.. For example, sputum culture shows staph aureus and what...

It never fails that this time of year is hard. Too many germs. My daughter had a dry cough last week(I was hoping it would go away, trying to ignore)..She had a routine CF appointment last week. This week she started feeling more yucky, tired increase in cough(really dry and irritated cough...

Above, I tried PM you but my message did not go though:(. Anyway, a genetic counselor is helpful. We met with a CF doctor while I was still pregnant for a one hour consult. This was covered by insurance..It was for us to ask questions and learn what Cf was. I was followed with ultrasounds...

I went through this. Mine started because I had a routine 20 week ultrasound which showed an echogenic bowel and an echogenic foci in the left ventricle of her heart. This was the starting point. From there the OB/GYN had us do bloodwork for lots of stuff(we were clueless about the CF thing)...

Hi there, It's been a while since my daughter was a baby, she's almost 12 now but she does have GI issues so I'll take a stab. I would definitely call the CF clinic as Aboveallislove stated. They may want to do an X-ray. I breastfed my CF daughter(I have never formula fed so someone else...

Jeannie85. No fever No cough. That's good! Her appetite is good. When my daughter was a toddler and had a cold I would also give her a warm bath; kind of helps the boogers flow. Make sure she gets rest/naps. Warm salty soup is good. Keep up with extra breathing treatments and VEST. I...

It is hard not to worry isn't it? One doctor told me your child has CF; they will get CF related things as well as just regular kid stuff related things like colds, strep throat, perhaps even appendicitis. Great! My personal opinion is to avoid the ER unless it is a true emergency. ER's...

Lauryn, Alot of CF does have to do with prevention. All the questions you asked are valid and I would absolutely discuss your questions with your daughter's CF doctor. Are you going to an accredidated CF center? Has your daughter had a sweat test? At any rate, treating pseudomonas...

When you get really excited that Miralax is on sale(that stuff isn't cheap)..I stocked up bought 3 huge bottles of Miralax and realized I had coupons as well; Figure I could't only but Miralax at the drug store so threw in 2 bags of Rold Gold Pretzels and I'm good to go. I always wonder what...

http://www.cff.org/aboutCFFoundation/NewsEvents/12-4-Recall-Probiotic-ABC-Dophilus-Powder.cfm

Hope I can post this. You can get an Amazon gift card for the survey. If you say I referred you so will I. I cam PM my info. Thanks for being a member of Rare Patient Voice. We have been asked to invite Cystic Fibrosis patients in the United Kingdom to participate in a survey. Most of...

They repeated a belly X-ray about 9 days into the flagyl rx and her belly xray looked better. Flagyl itself made her nauseous. Still on Miralax 2 times a day, GI increased the dose to 25grams 2xday. Hoping the Holiday food doesn't mess with things too much.

The GI thought that Flagyl has alot of side effects and if we could use this Probiotic instead it would be so much better for my daughter's health. I agree.. And while Yes this Probiotic is expensive it truly is nothing compared to a hospital stay with NGT and golytely so that could be our ammo.

We went for a GI consult and this was part of her recommendation to try this probiotic. She did say it was expensive and gave us a few samples to try. If we like it she is going to try to write a script to run through insurance. We'll see; she thought it was much stronger than Culturelle by...

Anyone use it? Thoughts? It is very expensive. Anyone able to get insurance to cover? It is being prescribed by our GI doc. Thanks

Anyway, I'll try again, I breastfed my CF daughter until she was 3 so any questions with that part I can help:). My daughter is now almost 12! She would throw up the salt as well, she did not want to take a bottle and I told the CF clinic and I stopped giving it to her. She as a toddler and...

Ugh I typed up a long response and it disappeared!

http://thedianerehmshow.org/shows/2014-11-20/the_cystic_fibrosis_foundation_new_opportunities_new_questions_for_nonprofits