Hi,
I started reading this site tonight and felt such a conncetion that I decided to post. I have a 6 month old boy who was diagnosed with CF at 1 week old when his newborn screening came back positive. My husband and I new, before we even had a sweat test that he had CF. His newborn screening was postived for the gene mutation I carry Delta F508 and the one my husband carried 3659delC. For us, the sweat test was just a formality. We knew our son has CF. At two weeks he had a positive sweat test at a CF center in Boston.
After suffering terrible post partum depression and going through what I think is very similar to the stages of grief, I am finally to the point that I am ready to discuss it and get educated. His diagnosis was devasting. We knew we were carriers and had gone through PGD to get pregnant. So the postive newborn screening was a complete shock.
We have formed a walk team for Great Strides and may. We have started volunteering for our local CF chapter.
My son is doing very well. He takes Creon 5 and is growing very well. Once he finally started gaining weight at 3 weeks of age, he has been between the 75-90th percentiles at his check-ups. Although at his six month one last week he had dropped to 50-75%. He had been sick two weesk before and I think actually lost a little weight. He had put on 8 oz since his sick visit, so I think he will get back on track.
He has had three colds, one required a course of antibiotics. He gets synagis to prevent RSV.
He is such a happy baby, we are lucky that he has had no reflux issue. Our other son who is 3.5 (no cf) was a preemie. In many ways caring for him as a babu was harder then getting used to CF routine has been.
I hope to get to know you all well and best wishes for the future.
I started reading this site tonight and felt such a conncetion that I decided to post. I have a 6 month old boy who was diagnosed with CF at 1 week old when his newborn screening came back positive. My husband and I new, before we even had a sweat test that he had CF. His newborn screening was postived for the gene mutation I carry Delta F508 and the one my husband carried 3659delC. For us, the sweat test was just a formality. We knew our son has CF. At two weeks he had a positive sweat test at a CF center in Boston.
After suffering terrible post partum depression and going through what I think is very similar to the stages of grief, I am finally to the point that I am ready to discuss it and get educated. His diagnosis was devasting. We knew we were carriers and had gone through PGD to get pregnant. So the postive newborn screening was a complete shock.
We have formed a walk team for Great Strides and may. We have started volunteering for our local CF chapter.
My son is doing very well. He takes Creon 5 and is growing very well. Once he finally started gaining weight at 3 weeks of age, he has been between the 75-90th percentiles at his check-ups. Although at his six month one last week he had dropped to 50-75%. He had been sick two weesk before and I think actually lost a little weight. He had put on 8 oz since his sick visit, so I think he will get back on track.
He has had three colds, one required a course of antibiotics. He gets synagis to prevent RSV.
He is such a happy baby, we are lucky that he has had no reflux issue. Our other son who is 3.5 (no cf) was a preemie. In many ways caring for him as a babu was harder then getting used to CF routine has been.
I hope to get to know you all well and best wishes for the future.