newborn with CF

[Brianne120]

My sons newborn screening came back abnormal/positive for CF. So when he was almost 1 month old he had a sweat test done. It came back on one arm at 102 and on the other arm 98. His pulm doc says he has CF. But every medicine, even the enzymes they put him on my sons body is rejecting. He grunts like hes in pain for hours, vomits and has dark green runny poop from the enzymes. When he passes gas he poops. I told them I am not giving him the enzymes anymore. He was born 7 lbs 15 ounces. and without the enzymes he is now 6 weeks old and weighs 11 pounds 9 ounces. I tried the enzymes for about 5 days.. the doctos said up the dosage of the enzymes, it made it worse. change his formula to pregestimil. My son wont drink..I forced 2 ounces down him and he vomitted it right back up and just screamed and cried the whole time the bottle was in his mouth.. So finally I told them enough is enough.. unless they are going to come to my house and be up with him all night and making him drink something he will not. They said they sent away for blood work but did not specify what kind.. the doctor agreed with me that something isnt right and has called in a gas doctor to check my son out. our appt is on december 28th. So as of now I am having a very had time accepting that my son has CF. He has not one symptom. Im causing him problems by giving him what the doctors ask me to give him. Without it, he is great. not one single sign of CF. I guess my question is has anyone ever been told their child has it and it not be true. False positive newborn screenings, then a false positive sweat test?? I am hoping the blood test can prove to me that their is a mutation there and he has CF. Not that I wanthim to have it, I just want answers! I want a 100 percent yes he has CF or no he doesnt.Also my son is being seen by Arnold Palmer doctors in Orlando Florida and more then one doctor has told me at their practice that they have never ever seen or heard of the enzymes doing this to a child. But I read the side effects on the packages ( because they have tried more than one brand on my son) and side effects are vomiting and diaherra (spelling?).. So if thats the case the docs have never heard or seen this before and they are a special CF practice, I am hoping my son has something else that they no nothing of that isnt a fatal lung disease.

 

[Brianne120]

My sons newborn screening came back abnormal/positive for CF. So when he was almost 1 month old he had a sweat test done. It came back on one arm at 102 and on the other arm 98. His pulm doc says he has CF. But every medicine, even the enzymes they put him on my sons body is rejecting. He grunts like hes in pain for hours, vomits and has dark green runny poop from the enzymes. When he passes gas he poops. I told them I am not giving him the enzymes anymore. He was born 7 lbs 15 ounces. and without the enzymes he is now 6 weeks old and weighs 11 pounds 9 ounces. I tried the enzymes for about 5 days.. the doctos said up the dosage of the enzymes, it made it worse. change his formula to pregestimil. My son wont drink..I forced 2 ounces down him and he vomitted it right back up and just screamed and cried the whole time the bottle was in his mouth.. So finally I told them enough is enough.. unless they are going to come to my house and be up with him all night and making him drink something he will not. They said they sent away for blood work but did not specify what kind.. the doctor agreed with me that something isnt right and has called in a gas doctor to check my son out. our appt is on december 28th. So as of now I am having a very had time accepting that my son has CF. He has not one symptom. Im causing him problems by giving him what the doctors ask me to give him. Without it, he is great. not one single sign of CF. I guess my question is has anyone ever been told their child has it and it not be true. False positive newborn screenings, then a false positive sweat test?? I am hoping the blood test can prove to me that their is a mutation there and he has CF. Not that I wanthim to have it, I just want answers! I want a 100 percent yes he has CF or no he doesnt.Also my son is being seen by Arnold Palmer doctors in Orlando Florida and more then one doctor has told me at their practice that they have never ever seen or heard of the enzymes doing this to a child. But I read the side effects on the packages ( because they have tried more than one brand on my son) and side effects are vomiting and diaherra (spelling?).. So if thats the case the docs have never heard or seen this before and they are a special CF practice, I am hoping my son has something else that they no nothing of that isnt a fatal lung disease.

 

[imported_Momto2]

Your son may have a variant of CF that is NOT pancreatic insufficient. So he wouldnt need enzymes. If he is doing well without enzymes, gaining weight normally, I would personally forgo them until a genetype test comes back. However, I am not an MD. There are many types of CF where people's digestion is fine. The lung complications from CF can also not necessarily start at birth and can be very mild. If you arent at an approved CF center, please find one.

 

[imported_Momto2]

Your son may have a variant of CF that is NOT pancreatic insufficient. So he wouldnt need enzymes. If he is doing well without enzymes, gaining weight normally, I would personally forgo them until a genetype test comes back. However, I am not an MD. There are many types of CF where people's digestion is fine. The lung complications from CF can also not necessarily start at birth and can be very mild. If you arent at an approved CF center, please find one.