Hi everyone.. We are not positive that my son has cf.. He was just born just about a month ago on May 14th. ( I have to admit I dont know much about CF except what I have read in the last day. ) I got a call from my sons pediatrician yesterday afternoon that his newborn screening test came back positive for CF. We are going for a sweat test on the 23rd of June.. I guess my question would be if the newborn screening test came back positive, does that mean he has CF, or could the test be wrong? Would he be showing some symptoms at his age if he was positive? I know that we will know more with the rest of the tests. I guess I am just looking for answers, and trying to educate myself as much as possible. Thank you for your time and helpTammyAlex - 31/2 weeksEmmalyn 21/2 years
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question newborn screening??
- Thread starter anonymous
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Hi Tammy,Unfortunatly it sounds like the test may be right. Here in Texas they do not have a newborn screening for cf but they have a prenatal blood test which screens for cf gene carriers~ which both my husband and i are. I am due July 11th with a baby that was diagnosed invetro with cf. I also have a little girl who is two and a half who does not carry the cf gene and does not have cf. My suggestion would be to contact your local cf clinic and and meet with them to have Alex examined. I am trying to learn as much as i can about cf before my little girl arrives as well, i do know cf really affects everyone very differently! Some of the signs to watch for in a newborn are loss of weight(failure to thrive), loose greasy fowl smelling stools, taste of salt on skin and reflux(projectile voimiting). If he does have cf he may need enzymes,lots of vitamins and breathing treatments for his lungs.I hope this helps a bit, and i hope the test is wrong -but if he in fact has cf and you would like to share newborn experiences, please feel free to email me directly at blythe.weston@comcast.net. It would be nice to help and have someone else who is going thru the same cf expereinces with a new baby.CONGRATULATIONS on your new bundle of love!!Let us know the outcome!~Blythe
thank you for replying.. On June 23rd we are going to the closest CF clinic to have his tests done and to speak with a genetic counselor. I chose not to have the prenatal blood test done, so i dont know if I or my Husband are carriers. We are in NY, unfortunately a lot of insurances dont cover the test here, and i was told by my OB that is was an expesive test.. they also told me that if there was no family history than the chances are very low... apparently they were wrong! I guess we will just wait and see what happens, and we will learn as we go.We will update as soon as we know anything!Congratulations on your new babyTammy
I was just reading an article about this because I was puzzeled that so few states actually do newborn screening for cf.Anyways this particular artical said that for every 21 babies identified through this screen as possibly having cf only 1 actually ends up having it. Did I phrase that right? That seems to be the reason that they are using for not making this a standard test, because so many babies are identified for further testing that don't end up having it. So it sounds like he has a better chance of not having it than of having it. But I don't really know any more than what I have just read in the last few days. I am just so frustrated with what we are going through right now with our child and feel like some of this could have been avoided if we had a newborn screening, we are also in Texas, where they don't do it. Definatly let us know how everything comes out, and know that this is a really good sight. We too are new to all of this and this has been one of the most helpful places that I have found.
Tammy,I hope that your baby doesn't have CF. My daughter didn't really show symptoms until she was about 6 months old, but some babies are born with cf related health problems. It just depends on the child. If the baby has CF than both you AND your hubby would have to be carriers. (except for extrememly rare cases when a gene from one parent knocks the other parent's gene out) I have a lot of basic info about genetics and CF stuff on my site if you want to check it out. go to http://groups.msn.com/TeamRachelJane I hope it all works out that he doesn't have CF.Andrea
My understanding has been that the screening will identify if the newborn is either a CARRIER of one CF gene or has two CF genes, therefore having CF... But that the newborn screening (a simple "prick" blood test that screens for a number of different things) does NOT distinguish between them. Hence the requirement for the second full testing (e.g. sweat test) to determien if the child is a carrier or has CF.If this is correct, then the chances are NOT higher that your baby has CF--- there's a pretty good chance that he or she is a carrier rather than having two CF genes.Good luck with the testing!
We found ourselves in the same situation 2 years ago. In may of 2002 I delivered my third child. The hospital asked if we would enter in a newborn screening study not yet mandated by our state. It was testing for cf and some metibolical disorders. we agreed and totaly forgot about it. A few weeks later the pediatrician called they picked up 1 gene for cf and needed a sweat test to rule out cf. He was sure he would just be a carrier. There is no family history and I had 2 healthy children. Well at 7 weeks my son was diagnosed with cf he scored 65 on his sweat test and the cf clinic ran more test to find the 2nd gene. It was found in september and the rest has been a complete rollercoaster ride. On a positive side My son is 2 and has shown NO signs of CF yet. We visit the Cf clinic every 3 months he has blood work and a chest xray 1xyear. We are trying chest p.t. to get him use to it. My husband and I have been through many emotions since he has been born. I am just able to tell people about him and his disease now 2 years later. I am a little angry that I've missed out on enjoying his infancy. I was always so worried for tomorrow. Now after 2 years I look at it as who knows what tomorrow will bring. So I try not to think about it. Stay strong and try not to miss out on the small things you can never get them back. We will pray for you and your child. I do a lot of that now!!!