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My husband (no CF) needs to see an ENT and I trust this community for providing feedback on docs. The recommended doc can not see my husband for 4-6 wks and we do not want to wait. Husband has been losing his hearing and is relatively young and the doc want to rule out anything structural or...

Mom2girls, The sequencing is wonderful news. Dry cough for my daughter can be inflammation; she is on inhaled steroids. If it gets bad enough with wheezes, tightness, shortness of breath we do oral steroids and may need antibiotics depending on the severity of symptoms cough and culture results.

Wow. I heard on a local radio show this morning that Mark Zuckerberg plans to donate 3 billion dollars over the next 10 years to cure disease. His wife is a pediatrician.

She is a perfectionist. So I am keeping an eye on her. however, she is also a leader so I hope that I can use this to her advantage. In the past, kids were always jealous of her lunchbox. Now she wants"healthy items" Key is for us to just get creative; nutrient dense health foods...Dried...

As my daughter gets older and is independent in her care; her backpack has a pocket full of CF health items. Albuterol inhaler, cough drops, Flutter valve.sometimes small thing of tums. Lunch box carries enzymes, sodium bicarb and salt packets, G2 and bottled water. Once cold flu season...

Great advice everyone. Quick review of her labs were ok. I think she gets conflicting advice from friends and general public about what is the healthy thing to eat. She did say she was tired of eating so much all the time. I did reiterate that because of her CF that she requires more...

Sometimes, people with CF just need a "tune-up". A more aggressive treatment to knock back the bacteria and mobilize their secretions. Hopefully the IV antibiotics do their job. Increasing CPT or Vest is good and can keep things at bay. I too tend to think of the worst case scenario, it's...

13 years ago I was in a similar situation. My daughter was prenatally diagnosed with CF via amniocentesis. We already had one child non CF a boy(4 years old). My husband said to me"This is not how we envisioned our daughter's life; but seeing how much we love our son; we will love her too...

Hmm. My daughter swallows her pills(takes 4 VSL#3) at a time. No port though. Wouldn't think it a problem if it's pill form?

I have never heard of this. Is is possible for you to request the literature sited? I don't understand how one could put Culturelle in a port.

mamahollie, how long does it typically take for the rash to go away?

It sounds like your CF docs are taking your daughter's issues seriously; by having an admission, PICC and Bronchoscopy. This will help figure out a good treatment plan for your daughter. I guess some advice would be; take a deep breath and try not to make too many assumptions about what may...

Does the Selsun Blue burn or irritate the skin? This is happening to my daughter and I am going to try it.

I would speak to the CF doc to double check with him/her before initiating a new treatment. The reasoning is to make sure you are all on the same page. Also, as long as my daughter is stable we will add in one thing at a time to see if it makes a difference. My daughter does her pulmozyme...

Does she do Pulmozyme?

Sounds like you are doing things right. Has your daughter's CF doc ever suggested doing her VEST or CPT twice a day? We actually do my daughter's VEST 3 times a day. Before school, after school, before bed, but 20 min session. We started doing this when she was 2 1/2 because she was having...

I do not know the answer to your question. I have seen the Vibralung online at the price you stated. I was going to mention about another device that is alot cheaper called the Aerobika. http://www.aerobika-therapy.com/aerobika-pep-therapy/ I was going to ask our CF clinic about it at my...

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Has he had genetic blood work looking for CF mutations? Any doctor could order it, even his GI doctor. There is something going on with your son and you and your son need answers. There are over 1000 known mutations for CF. You son needs to have 2 in order to have CF. I would request the...

Alot of scripts I do use the automated refill; sometimes they don't work or the prescription expires so I thought I'ld teach her all the ways to refill a script:) I'll give the pharmacist a head up when I get her script tomorrow. They know us well. I could hear the smile in the pharmacist's...