Mom in need of advice!

My son is currently 22 months old. He was born with ASD and VSD, an ear tag and a hyperplastic L thumb. He had recurrent lung infections accompanied by hospitalizations. He was tested for cystic fibrosis and ciliac disease via a blood sample and we were told the tests were negative. There has been no sweat test performed as of yet. In October following a CT scan, he was diagnosed by a well-respected hospital with a birth defect which caused the bottom lobe of his right lung to be cystic. In November, he had the bottom portion of his lung removed. This portion was almost double the size of what it shuld have been. After that, he recovered well and began to grow again. However, in mid-February, he came down with another respiratory infection which has since landed him in the hospital. His appetite is once again poor and I am at my wits end! My guts tell me there is more to this than they have found. My doctor has been very dilligent; however, my personal strength is wearing incredibly thin. I'm scared that they are missing something that could otherwise be prevented and/or treated. If anyone has anything they can share to help guide me in my decisions with my son's situation, it would be greatly appreciated. I am unsure what my next step should be. Thanks to all who respond.

Well sweat test are not a good way to tell if your kid has C.F. Because they have been wroug alot you need to get a blood test for the gene that is always right but you must test for all the diffrent kinds of genes in C.F. there are over 150 diffrent kinds.

It cost alot but that could help you to get to the bottom of it. My daughter has C.F. and has the most common gene f-508 that the one that effect every thing but the brain. there are ones that only mess up the liver and  or just the lungs or the bowels. So good luck and my daughter was in the hospitl almost for the first 2 years of her life. I can you it will not last forever it will get better lean on God alot to get thur this . God did not give your kid this thing there is a devil out there and he can mess thing up but you must not let him win. I will pray for you. my daughter is nom 14 years old.

Thanks to those who responded. You gave me some insite that I hadn't found on my own.

Though they did do some gentic testing a the hospital I mentioned, I don't think they tested specifically for CF. They were looking for  a diagnosis for the all of the birth defects.

My doctor tells me that my son must be older to do a sweat test for reliable results. So, we are still waiting. He goes for a re-check in June to the hospital in IA City. Maybe we'll get a few answers there.

Thanks again!