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Okay we have a 13 year old son with CF who has mild lung disease that has a cough. We have brought this problem up to the pulmonary clinic when it started out of the blue about 3 years ago. He doesn't cough all of the time but when he is doing soccer or basketball, running or rough housing he...
Okay we have a 13 year old son with CF who has mild lung disease that has a cough. We have brought this problem up to the pulmonary clinic when it started out of the blue about 3 years ago. He doesn't cough all of the time but when he is doing soccer or basketball, running or rough housing he...
I have 34 each 24" right angle feeding set with y-port and 3 each 12" bolus feeding set with single port. These are the extension lines that hook from the tubing from the feeding bag into the g-button during feeds. These are for the AMT Mini button not the Mini One button. These aren't...
I have 34 each 24" right angle feeding set with y-port and 3 each 12" bolus feeding set with single port. These are the extension lines that hook from the tubing from the feeding bag into the g-button during feeds. These are for the AMT Mini button not the Mini One button. These aren't...
I have 34 each 24" right angle feeding set with y-port and 3 each 12" bolus feeding set with single port. These are the extension lines that hook from the tubing from the feeding bag into the g-button during feeds. These are for the AMT Mini button not the Mini One button. These aren't...
I have 34 each 24" right angle feeding set with y-port and 3 each 12" bolus feeding set with single port. These are the extension lines that hook from the tubing from the feeding bag into the g-button during feeds. These are for the AMT Mini button not the Mini One button. These aren't...
I am not a stay at home mom. I have a 13 year old and a 7 year old both with CF and my husband and I both work full-time. My husband is self employed so he is flexible but *knock on wood* neither of my boys have been admitted for a clean out. My youngest got pseudomonas about 3 years ago and he...
Nutella is a higher calorie spread for small serving size. My kids just eat it out of the jar with a spoon like peanut butter. Obviously extra butter, whipping cream in place of milk, etc. Have you thought about a g-button? How is your BMI and weight? How are your PFT's? Just curious
Look on Pinterest for good natural ways to help the whitening process as well as whitening toothpastes. I heard rubbing the inside of a banana peel on your teeth works as well as putting peroxide on them for 30 seconds before brushing your teeth.
My oldest is 13 and he has been on Pulmozyme for about 7 years and he has never had this issue. My 7 year old has been on it for about 8 months and he hasnt had this issue also. They both use a both note a mouh piece. I am curious to know what is the true cause of this...
It is a case by case basis. I would talk to the dietician and let her know your thoughts and how you want to give the girls a shot to hold their own by eating their calories. You are their mother and if you think that they can keep up with eating the high amount of calories they need on a daily...
Phase 3 of 809 and it is the Nebraska Medical Center and Children's Speciality Clinic in Omaha as well. I am not sure where they are in recruiting but he was going to let us know what the qualifications are for our son to be in the study. I belive he said the youngest now is 12 years old and our...
We had our visit to our CF center that is taking place in this trial and the dr. that we saw explained all of the trials, etc. and my son may actually qualify to be in this study. He said that they are recruiting or gets all of their ducks in a row to recruit. It sounds very exciting how he...
Those symptoms sound just like it. I would maybe have them re-test and maybe even call a CF clinic and talk to one of the nurses. I cant think of anything else that would have those same "CF" symptoms. I would go for a second opinion.
In our state CF testing is part of the newborn screening. There were signs like runny stools, stinky gas, and no weight gain. I would ask them to test him.
My boys both have the Hill Rom #105 and we love it. It seems to do good and it seems easier compared to some of the other ones I have seen at our annual CF meeting. It comes with a nice big, tough bag with each thing having it's own spot and even room for a compressor. Good luck finding the...
We have appointment times and they normally do a 1 hour block so the boys can go together. We check in and get a buzzer that will light up when they are ready. There is a whole huge waiting room so we go and sit by ourselves until our buzzer goes off which usually is within 5-10 mins. We go back...
Our oldest son is 13 and has had a g-button since he was 5. I can say that we waited too long before he got it b/c he ended up getting sick and couldn't fight the infection due to no reserve. It was a great decision for us and for him as well. No one wants their child to have to go thru surgery...
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