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I just want to say how thankful I am for this website!! It has helped me with so many obstacles we have faced with my little angel Mariah. She is only 2, but we have had so many issues and I really don't think I could've coped without this site. The doctors are helpful, but when it comes to the...

This is for all of you out there who used to use Pancrecarb through the gtube with night time feeds or when your children won't take their enzymes like my daughter. I fought and fought with the FDA trying to let us get an extension or a Investigational Drug status with the Pancrecarb, but they...

I have recently purchased a countertop dishwasher that has an Intensive wash cycle that heats up to 158 degrees for 35-40 minutes. I haven't gotten it yet, but I can't wait! It will be so convenient for us to just put them in there and push a button to have the clean and sterile. So my...

My daughter had a culture done in September that showed light growth of Enterobacter and Staph. She had no symptoms though so we did not treat it. Now in November she is showing a heavy growth of Enterobacter and a light growth of Staph. And she has had a cough for a month. At first she had a...

A few questions: Do you do overnight feeds? Do you have a mickey button? What type of formula do you use? How many calories do you get overnight?

My daughter is about to get a pump to do overnight feeds as opposed to daytime boluses. I am concerned though about what enzymes we are going to give her so that we don't have to wake her up. I know that most people right now use Viokase powder or Pancrecarb, but it is being discontinued. A few...

My daughter is about to get a pump to do overnight feeds as opposed to daytime boluses. I am concerned though about what enzymes we are going to give her so that we don't have to wake her up. I know that most people right now use Viokase powder or Pancrecarb, but it is being discontinued. A few...

I met a girl from Huntsville, AR last night and her sister is from Louisiana. Her sister has a little girl that is two years old with CF. She said she is on the forums and I think she said her username was Mandystanton103, but I can't find that name. I know it ends in 103. Thanks

I was blunt with the things I said in this, but I wanted everyone's opinion. Also, if I left anything out let me know because I am not afraid to send it again. Here is her email: theresa.toigo@fda.hhs.gov Please send her an email. I am extremely hopeful, but I really think if we all do this...

I was blunt with the things I said in this, but I wanted everyone's opinion. Also, if I left anything out let me know because I am not afraid to send it again. Here is her email: theresa.toigo@fda.hhs.gov Please send her an email. I am extremely hopeful, but I really think if we all do...

My daughter has needed Prevacid since birth. She had Meconium Ileus and an adhesion so I think this has damaged something obviously. I am wondering if reflux is more common in those who have had meconium ileus at birth or if it is just all Cfers.

What pressure and frequency do you use?? And do you alternate these during a single treatment? My daughter is 23 lbs and received s child's small vest. The machine allows you to program 8 different settings. (I think) Thanks

My daughter is 15 months old and 23lbs. They sent us the child small vest. It allows you to program I think 8 different settings. What settings do you use and do you alternate frequency and pressure during a single treatment? Thanks

My daughter Mariah is solely gtube fed, but does eat some by mouth. I am looking into blending whole foods and putting them through her gtube verus pediasure. My thoughts are that whole foods are a better option than a synthetic formula. Has anyone done this or know anyone who has done this...

Is this a pediatric clinic for routine CF care? What are you opinions of the center?? Thanks in advance

Does anyone currently or in the past have gone to the Oklahoma Cystic Fibrosis Center for Pediatrics and Adults? What are you opinions about the center? Thanks in advance

So I hope this doesn't offend anyone. :-) I have asked my daughter's Dr. in Little Rock, AR about the NAC two different times: 1. The first time I asked about 9 months ago because my daughter's naturopath recommended it, he said he thought that the oral form wouldn't have any benefits. He also...

My daughter just started Pancreacarb 4s and we mix them with applesauce in a 60ml slip tip syringe and put them right through her mickey button. I can't tell you how much better this is. No more fighting. Maybe in six months she will be actually drinking hher formula.

When you start noticing you need more or different enzymes, do you have bulky stools with mucus, constipation, or both? Thanks

I was just wondering who has used this and if it has worked well with absorption. My daughter's dietician told me that it doesn't work very well. Has this been your experience?