Just wanted to share our stoty so far. Already it has been a rough road. We are very confused and looking for some insight from people that have been there.
Our son, who is 7, has been sick off and on since he was born. We spent a few extra days in the hospital when he was born because his lungs were'nt working quite right. At six weeks he got the first of multiple ear infections. It seemed as though every time he would get over an ear infection with in a week or two he would get another one. The ped we had at the time didn't seem to care and told us he had to have so many close together before she would refer him to an ENT.
At 8 months we had our first hospital stay with RSV. The ear infections continued, and he started getting sinus infections to. He is one of those kids that either has a runny nose or a cough or both.
He has since been hospitalized 3 more times for pneumonia. The last hospital stay in February of 2009 (7 day stay) and a few peds later, they decide that something is not right.
They did a sweat test while he was there and the results were 58. They are not an accreditted test facility so they sent us to a cf center to have the test repeated. We got very confusing results. They did both arms the first time and the results were 25 and 26. We thought that those numbers were good but his pulm wanted to repeat just to be sure. This time they tested his arm and his leg (his other arm is in a cast) and the results were 50 and 51. We are now waiting on the genetic testing to come back. It has been two weeks so any day.
He is 50 inches tall and weighs 52lbs. BMI is 14.6. This kid eats like a grown man and doesn't gain weight. His bowel movements are very large and foul smelling, although I have not noticed anything oily( although they always float). He goes to the bathroom immediately after eating, sometimes in the middle of dinner. When he cries his tears dry very white on his face. He has a constant cough. He just got over a double ear infection and within a week we are back on anbx for a sinus infection. His PFT's are at 89%.
I am sorry that I am rambling. I am just very worried. Any thoughts or information would be greatly appreciated.
Our son, who is 7, has been sick off and on since he was born. We spent a few extra days in the hospital when he was born because his lungs were'nt working quite right. At six weeks he got the first of multiple ear infections. It seemed as though every time he would get over an ear infection with in a week or two he would get another one. The ped we had at the time didn't seem to care and told us he had to have so many close together before she would refer him to an ENT.
At 8 months we had our first hospital stay with RSV. The ear infections continued, and he started getting sinus infections to. He is one of those kids that either has a runny nose or a cough or both.
He has since been hospitalized 3 more times for pneumonia. The last hospital stay in February of 2009 (7 day stay) and a few peds later, they decide that something is not right.
They did a sweat test while he was there and the results were 58. They are not an accreditted test facility so they sent us to a cf center to have the test repeated. We got very confusing results. They did both arms the first time and the results were 25 and 26. We thought that those numbers were good but his pulm wanted to repeat just to be sure. This time they tested his arm and his leg (his other arm is in a cast) and the results were 50 and 51. We are now waiting on the genetic testing to come back. It has been two weeks so any day.
He is 50 inches tall and weighs 52lbs. BMI is 14.6. This kid eats like a grown man and doesn't gain weight. His bowel movements are very large and foul smelling, although I have not noticed anything oily( although they always float). He goes to the bathroom immediately after eating, sometimes in the middle of dinner. When he cries his tears dry very white on his face. He has a constant cough. He just got over a double ear infection and within a week we are back on anbx for a sinus infection. His PFT's are at 89%.
I am sorry that I am rambling. I am just very worried. Any thoughts or information would be greatly appreciated.