This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!
I have a 13 year old and a 7 year old, both boys, both with CF and g-buttons. We have struggled with weight gain from the start with both of them. We pushed the extra calories because they were both picky eaters also. We tried extra butter, etc and it seemed to maybe help a little but then they...
The only thing to keep in mind is if you have medicaid or government funded insurance you don't qualify for the Creon/Pediasure/Vitamax program. My kids both have medicaid secondary and since part is paid by them we are no longer able to do this. I am glad though that I have insurance thru my...
When our oldest got his about 8 years ago he got the Stamm I believe. When our 7 year old got his this past July he got it lapriscropically. They said it is much less abrasive and the recovery time was less than when our oldest got his. I would do it the easiest way and once you meet with the...
We were the same way when our now 13 year old was born with CF and meconium ileas. We had never heard of CF and had no clue that we were carriers either. We when we found out we were pregnant with our now 7 year old we chose not to get the amnio b/c of the risk and it wasn't going to change...
My oldest son who is 13 has one as well as my 7 year old son. My oldest is very self concious about it b/c he is in middle school, etc. He has the mini-one button which I believes has the smallest profile and he wears the big band-aids over it to keep it close to his skin. He will even wear an...
I have "gotten in trouble" from the CF Clinic for calling our Pediatrician for a cough, etc. Our pediatrician is in our home town and she is very familiar with our 2 boys and their CF. She does cross check her thoughts with our CF clinic to make sure they are okay with it, etc. It is easier to...
LeChampion so you are doing the trial for the mutations doubel DF508? What is the name of the med that is in the pipeline? That is exciting, please keep us posted.
Just to clarify we aren't in any of the studies I was just looking for people who possibly are and could maybe let us know how the experience is going; is it helping, have your PFT's gone up, side effects, etc. It is pretty exciting news that they are working on this particular gene mutation.
My husband and I are both carriers and we knew there was a chance that she would have CF also like our boys. We wouldn't have done anything differently if we would have found out early that she did have it. They watched her growth and the coloring of her bowel on the ultrasounds for the...
I am just wondering if anyone with the double D508 have been in any of the trials with Kalydeco or any other pipeline drugs like Kalydeco. My two boys, 13 & 7 have this mutation and I am just wondering what people's experiences have been. Thanks,
I am just wondering if anyone with the double D508 have been in any of the trials with Kalydeco or any other pipeline drugs like Kalydeco. My two boys, 13 & 7 have this mutation and I am just wondering what people's experiences have been. Thanks,
I am just wondering if anyone with the double D508 have been in any of the trials with Kalydeco or any other pipeline drugs like Kalydeco. My two boys, 13 & 7 have this mutation and I am just wondering what people's experiences have been. Thanks,
One thing to always watch for when they are having a harder time breathing is if they are retracting. Retracting is when they are laboring so hard that their belly sucks in just under their ribs or in front of their neck. I am sending good vibes to you and your little one and I am sure it will...
Our 7 year old goes to the nurses office to get/take his enzymes for lunch and snack if the snack is somethinghe wants. Our 13 year old still goes to the nurses office which is right across the hallway from the cafeteria. I know he is responsible for his age but I also see how he doesnt like...
Merry Christmas from Nebraska
Just wanted to wish everyone a Merry Christmas and a Happy New Year. Everyone on here has been so helpful since I started coming here when our oldest who is now 13 was diagnosed. I am now able to come here and be one of those helpful people to the parents that are...
Just wanted to wish everyone a Merry Christmas and a Happy New Year. Everyone on here has been so helpful since I started coming here when our oldest who is now 13 was diagnosed. I am now able to come here and be one of those helpful people to the parents that are going thru what we went thru 13...
My 7 year old cultured it this time of year about 2 years ago. We did the Tobi and an oral antibotic for 2 weeks and he still cultured it. We ended up having to go on IV antibotics for 2 weeks and he hasnt cultured it since. With the IV's he was only admitted for 2 days while they got the dose...
Congrats on your new beautiful bundle of joy. I am glad that things are going so smoothly for you and your family. I was in your spot 13 years ago but my son was born with meconium ileus and required surgery 4 hours after birth, etc. He is now 13 and very healthy, he plays soccer and basketball...
This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
By continuing to use this site, you are consenting to our use of cookies.