Newborn with Del F508 and 5-T 12 TG...anyone else with these?

J

julieta79

Guest
My newborn baby boy was screened and showed Del F508 and 5-T 12 TG, no other mutation is present. His initial sweat test is 20. Doctors can not tell me what happens next, as this combination could produce mild symptoms or none. Please share if you have a child or you are an adult with this. When were you diagnozed and what kind of symptoms did you have? Any info is GREATLY appreciated(VEST)
 
N

noahmygiftfromgod

New member
I believe this is the mutation strand that my son has. I would have to double check when I get home, think it is. He is a very light case, he can get sick easily though, he's kinda like a kid with bad asthma. I've had some really rough times with him being sick, but didn't help that he was born in the winter. He's been doing great now though. He's 2 yrs old and hasn't been back into the hospital in about 10 months. Its much easier to contact me if you have any questions for me on my email, which is melwilson78@gmail.com. I know it really sucks not having someone to talk to that can relate with what you are going through. If you would like email me and we can chat about any questions that you may have. Take care, Melissa.
 
J

Julie7

New member
Julie, my son has 5T 12 TG but not the Delta F508. He's in diagnosis limbo, 9 years old. You can see my older threads to read whole story. Stay strong and congratulations on your new baby!
 
Z

zinnia

Guest
hello julieta79, my son is 22 month old, he is Del F508 and 5-T 12 TG, dx by screnning, he has noT clinical symptomatology, no, it has not coughed in his whole life, we do not make any prophylactic treatment, none, their sweat tests were normal, never been in a hospital, he is a healthy baby, we've practiced ray x of lungs, coprological tests, everything went normally, my advice is to do all the necessary tests, but genetics is not destiny, very many factors involved beyond just two genes, factors such as breastfeeding, food, environment, and the rest of genes.
I wish with all my heart that you have a healthy baby.
 
J

julieta79

Guest
Hi zinnia
Yes, you are right...I got contacted by many people with the same genes, adults and older children...seems like the doctors don't really know how this will turn out, but I have hope...please email me if possible julietast@yahoo.com
 
R

Rita Tyeptanar

New member
Julieta79 I was just looking at these posts because my son has just been diagnosed with this mutation.. Been going thru the whole CF thing tho since birth his sweat test was 59.. But I was just wondering if your child has had any CF related symptoms I know every kid is different but I'm just kind of curious of what maybe to expect. This whole thing has been a bit frustrating with the bidet line sweat test and everything and he does experience some mild congestion at times but other then that he's doing good. He just turned 7 months old. Thanks a lot for your time! Feel free to email at rmyszkowski@hotmail.com
 
You must log in or register to reply here.
Top