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My 8 year old told me he doesn't understand why everything has to be for cancer. ( At his school all year they raise money for relay for life). He went to the nurse and asked why wasn't there more for CF. I was proud of him for speaking up. The nurse started doing research to get more awareness...

My 4 year old has had the same problem since 2010. We have been the ENT and ID doctors. Our CF doctor has seen him go from being completely fine to sick in a matter of minutes. No one has any answers for us. Not only does he get the fevers he doesn't sleep very well. Reading this today does make...

I have 3 kids and they all have variants. My oldest son has 5t 7t and the older he gets the more lung issues he has. My middle child also has 5t 7t she has respitory problems and takes creon. She was admitted for the first time last year and was in for 5 days and on home ivs for 3 weeks. My...

Thank you everyone. You have made me feel better, I was begining to feel crazy. I only want to help everyone in a bad situation. I was told the same thing about the water fountains that people have other bacteria that I don't know about. It makes me so angery that people don't care. I am getting...

Thank you. Tonya that is exactly what I told the school I wanted to protect all parties invovled . Not that you wouls ever know but I would feel awful if one of my kids got the other child sick. We all do go to the same clinic, I found all of this out through a friend who also goes to the...

What wold you do if you found out that there was another cfer on your childs school, in the same hall and they had cepacia? This has happened to me and it has turned into a fight with the school.I found out and asked the school nurse to make sure they didn't sit next to each other in assemblies...

Thank you all for everything you have said. I do know that he is am idiot I just wish he knew. He had promised that he would go to the doctors and get a full work up.... that was until today when the STUPID doctor he went to for a follow up from last week told him he has nothing to worry about...

Hi I need help, my husband has never diagnosed with CF because he is scared to know the answer. He had 2 sisters that have passed away and we have been told our 3 kids have a typical. With that being said he had to have a physical done for work he has been healthy lately he has changed his diet...

Bill yes we do see a CF Specialist at Childerns. I am taking him to the doctors today he had another episode last night of getting sick. Thank you and I will keep you updated.

Thank you everyone. We go to Childerns Hospital in Wash. D.C. I wil be calling the Doctor in the next day or so if he doesn't seem to be getting any better. Thank you again.

I have a quick question... My 6 year old had gentic testing done in Dec.and it came back that he had 5t 7t. He has had respitory problems and family history that was the reason for the testing. He has never had a problem with his weight, he did have problems with constipation when he was a...

Dragonlady I feel the same way we are going through the same thing right now. My 4 yr old just spent a week in the hospital and came home with her first picc. Parents in her class sent their childern to school sick with the stomachbug. She had a respitory infection on top of not being able to...

Dragonlady I feel the same way we are going through the same thing right now. My 4 yr old just spent a week in the hospital and came home with her first picc. Parents in her class sent their childern to school sick with the stomachbug. She had a respitory infection on top of not being able to...

This is what I know just from what I have gone through with my kids.... 6 yr old 5t 7t respitory problems 4 yr old respitory allergies and is on creon, 3 yr old respitory problems, creon, and in the hospital 7 times in less than 2 years 3 picclines and has tested positive for 2 cf bacterias

This is what I know just from what I have gone through with my kids.... 6 yr old 5t 7t respitory problems 4 yr old respitory allergies and is on creon, 3 yr old respitory problems, creon, and in the hospital 7 times in less than 2 years 3 picclines and has tested positive for 2 cf bacterias

Its not your fault I feel the same way.We have had 6 hospital stays in less than 2 years and on our thrid picc line. I have 3 kids that have to do the treatments but my youngest is the one that we have the problems with. I am sure you are overwhelmed with it all. Take a walk and get some fresh...

Its not your fault I feel the same way.We have had 6 hospital stays in less than 2 years and on our thrid picc line. I have 3 kids that have to do the treatments but my youngest is the one that we have the problems with. I am sure you are overwhelmed with it all. Take a walk and get some fresh...

Hi Steve I have 3 childern my 6 year old was just had the Ambrey test done because of family history and chronic broncitis which he was just recently on 3 rounds of antiboitic and oral steroids. His test came back 5t 7t . My 4 year old was tested 2 1/2 years ago came back the same 5t 7t and she...

I have three kids 2 with a typical and waiting on test for the other one. My youngest has been hospitalized 5 times in less than 2 yrs. He is just 3 yrs old. We are very lucky we have both sets of parents nearby, my in laws are the primary caregivers when we are in the hospital. We let the...

I have three kids 2 with a typical and waiting on test for the other one. My youngest has been hospitalized 5 times in less than 2 yrs. He is just 3 yrs old. We are very lucky we have both sets of parents nearby, my in laws are the primary caregivers when we are in the hospital. We let the...