ConcernedAunt
New member
I guess I will start by saying hello to everyone I'm new here. Fairly new to the whole CF idea, actually the idea that my 8 week old nephew has CF.
I guess I will start off with a little background. I am the middle child of 3. All of us girls. My older sister has had 2 children and found out that she was a carrier of CF during her 1st pregnancy. None of her children were diganosed with CF. I became pregnant in '04 and found out that I too am a carrier of CF and my daughter was not diagnosed with it either. When my little sister became pregnant in '06 it was no surprise that she too was also a carrier. Being late in her pregnancy she didn't feel the need for the babies father to get tested for we thought there was no big risk.
My nephew Austin is now 8 weeks old. He was born 7lbs. 1.5 oz and hasn't seemed to gained any weight for the last 8 eight weeks. He had Thrush when he was about 1 week old. My sister has made comments about not feeling comfortable with her peditrician (example when he had thrush he was never weighed, nor was the doctor for the last month and a half concerned with the lack of weight gain). My mother is a nurse and though this was very odd. Over the holidays Austin has been continously around all of our kids, who all have had this head cold and cough. Needless to say Saturday of this past weekend Austin got a cough. Thinking it was just a virus like the rest of the kids we figured it would run its course. Anyways it got worse my little sister called her peditrician Tuesday and they were unable to fit him in. (Are you kidding me my peditrician would of gotten my daughter in somehow) Fed up my little sister called and switched his doctor to one that she has gone too all her life (insurance is why she hadn't done this to begin with) Anyways since it was late in the day the new doctor had closed and advised her to take him to the ER which she did. The peditrician in the ER said his lungs were clear and the cough wasn't a major concern at the time but his lack of weight gain was. She informed my sister that she needed to make sure he was draining her so he gets the fatty milk at the back of the breast and that he needed to be weighed everyday. She made sure that the new doctors knew what was going on and set up an appointment for Wednesday. So yesterday my little sister goes to get Austin's records from the old peditrician she takes them to my mom and they find out that Austin has tested positive for CF 2 times. No one told my sister anything, let alone hello he was a high risk patient and they didn't see him for the cough knowingly he tested positive for CF. The new doctor saw him yesturday and is sending them to Johns Hopkins in Baltimore for a sweat test.
Scared, Shocked and Upset is the only way I can described what we all are felling right now. No one can talk about it without crying, my little sister is a wreck and I am looking for answers to everything. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I just want to call he old doctor and scream and yell, How could they keep this from us? Why is this happening? Will he be a normal little boy or will he have to live in a bubble? Could they be wrong? What if the sweat test is negative? is that even possible? I'm so concerned and looking for answers.
Sorry this was so long...
I guess I will start off with a little background. I am the middle child of 3. All of us girls. My older sister has had 2 children and found out that she was a carrier of CF during her 1st pregnancy. None of her children were diganosed with CF. I became pregnant in '04 and found out that I too am a carrier of CF and my daughter was not diagnosed with it either. When my little sister became pregnant in '06 it was no surprise that she too was also a carrier. Being late in her pregnancy she didn't feel the need for the babies father to get tested for we thought there was no big risk.
My nephew Austin is now 8 weeks old. He was born 7lbs. 1.5 oz and hasn't seemed to gained any weight for the last 8 eight weeks. He had Thrush when he was about 1 week old. My sister has made comments about not feeling comfortable with her peditrician (example when he had thrush he was never weighed, nor was the doctor for the last month and a half concerned with the lack of weight gain). My mother is a nurse and though this was very odd. Over the holidays Austin has been continously around all of our kids, who all have had this head cold and cough. Needless to say Saturday of this past weekend Austin got a cough. Thinking it was just a virus like the rest of the kids we figured it would run its course. Anyways it got worse my little sister called her peditrician Tuesday and they were unable to fit him in. (Are you kidding me my peditrician would of gotten my daughter in somehow) Fed up my little sister called and switched his doctor to one that she has gone too all her life (insurance is why she hadn't done this to begin with) Anyways since it was late in the day the new doctor had closed and advised her to take him to the ER which she did. The peditrician in the ER said his lungs were clear and the cough wasn't a major concern at the time but his lack of weight gain was. She informed my sister that she needed to make sure he was draining her so he gets the fatty milk at the back of the breast and that he needed to be weighed everyday. She made sure that the new doctors knew what was going on and set up an appointment for Wednesday. So yesterday my little sister goes to get Austin's records from the old peditrician she takes them to my mom and they find out that Austin has tested positive for CF 2 times. No one told my sister anything, let alone hello he was a high risk patient and they didn't see him for the cough knowingly he tested positive for CF. The new doctor saw him yesturday and is sending them to Johns Hopkins in Baltimore for a sweat test.
Scared, Shocked and Upset is the only way I can described what we all are felling right now. No one can talk about it without crying, my little sister is a wreck and I am looking for answers to everything. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I just want to call he old doctor and scream and yell, How could they keep this from us? Why is this happening? Will he be a normal little boy or will he have to live in a bubble? Could they be wrong? What if the sweat test is negative? is that even possible? I'm so concerned and looking for answers.
Sorry this was so long...