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Thank you again and sorry for the confulsion. Yes, Justin has been on the vest for over a year now. The problem was that he could feel the mucus but not clear it. We are now doing the same schedule Aboveall mentioned, without the Pulmozyme and with Symbicort instead of QVar. We do it in that...

Hi, Thanks for all of the advice. We saw the CF clinic last Friday (new doctor). He was having bronchospasms. Apparently, the thick mucus is clogging his small airways along with inflamation. His 25/75 is the only thing that is low (still somewhat low on the 75 side after 1 week of oral...

Hi Abovelallislove and Ratotosk, Thank you both for responding. Ratatosk, could you tell me a little more about the Steno Malto? Did your son have more cough on exertion? I am starting to worry because Justin is still coughing 30 hours after the first dose of steroids. I hope and pray...

Hi, My son Justin (8) was diagnosed last year. We have had a relativly calm 6 months, other than a couple of respiratory viral infections that lasted about a month total. Starting last week, Justin developed a non-productive cough that gets worse with exercise. He would cough up to 30 times...

We were told the only pancreatic disorders that affect the pancreas are CF and SDS (Swachman Diamond) which is pancreatic and bone marrow failure. My son was tested for both because of some blood issues, but does not have it. I think you would have a good idea if your child had this. If the...

Sorry for the complaining last night. I try not to do that much. As all of you, I hate seeing him not feel well. Sometimes gets me down. Today will be better. Thanks for your patience.

We have a 504, a health plan and a GIEP. Apparently the 504 means they have to let us know if an "epidemic" hits his class (I think they only called me becaue the Dept. of Health was called in with almost 40% absent) but does not really give us any rights to choose if it is safe to send him...

So has your child missed to avoid catching something that the other kids in the class had? What percent of the class is reasonable do you think? Thanks for your thoughts.

Hi, My 8 year old son is new to his public school this year. We have an agreement with the school under his 504 (or at least I thought we did) that if a flu epidemic hits his school we would be made aware and (my understanding) that he would be out until it passes. Justin can not have the flu...

Justin has now been on the antibiotic for 13 of 14 days. He started sounding junky again yesterday, and is feeling bad today. He has been on the couch all day with a fever of around 100.5. He has a cough (his baseline is none) and complain of some pain in the lower right part of his chest...

My 8 year old son LOVED IT!!!! We hope she knows she is a real super hero!!!!!

Hi, Sorry you are still going through this. When we had our stool samples done 2 years ago, we expected to find a high calpro number, but ours was normal. It was our elastase that was low and got the the point of where it could not be detected within 6 months. It is good that yours is...

What a blessing that these are the "issues" with your children. I hope when my now 8 and 10 year old are that age, this is the worst I have to complain about. You can tell they are girls though, my absent minded professor (10 year old) boy's list would include 1. we put clean clothes on after...

Okay, got off the bus and he was not feeling well. Would not eat a snack and wanted to skip violin and basketball. Started to get a fever that is now between 100-101. My mommy radar was right, something is going on. Glad we are on the antibiotic. May have caught it early enough . . . sure...

Thanks everyone!!! I took him to the ped's office yesterday. He did not really seem bad at all, no fever, but did not want to take any chances. His PFT's were quite a bit lower in the 25/75 from 93% to 59%, and FEV 1 from 104% to 88. So.... we are on an antibiotic for 14 days, Symbicort...

Hi, This is our first full winter with Justin's (8) cf diagnosis. I do not remember (or know for sure) when to call the doctor with a "cold". Everytime Justin has been sick in the past, it went from one or two coughs to a fever and clearly sick within 24 hours. This time, he has had a cough...

Lisa, Thank you so much for your positive message. You definately remind us that the glass is more than half full!! God bless you and your children.

Hi Colleen, My question, because I still do not completely understand some of this, is what is the difference between CRMS and CF? Our CF doctor said the only reason to do further testing to find my son's 2nd mutation would be to "satisfy doctors (I knew she meant one of the GI's we have seen)...

Hi, Justin's numbers were both under 20. Don't remember the exact (maybe 14 and 19) but much lower than 44. His F1052V is known for passing the newborn screening AND giving a negative sweat test. My prayers are with your friend.

Bill, Glad we got that cleared up. We will continue to be your biggest cheerleader. Keep yourself healthy because I want to be able to tell my son "I know a man with CF that lived to be over 100 years old". Superheros come in all forms!!!!