meteoras69
New member
Hello,
My son, Aidan, now age 15 months, was diagnosed with CF via newborn screening. He struggled with weight gain a great deal during his first six months, usually hanging around weight-for-length percentile of about 15% or so. During the second half of his first year, his weight-for-length percentile climbed to around 25-30%. His CF center treatment team began commenting at around one year that they thought he needed a G-tube. Over the next couple of months, his weight-for-length percentile moved up to around 40%. The treatment team kept stating that he needed a G-tube, and that he would do very poorly in the future if he did not get one. At 14 months, his weight-for-length ratio was 42%, and his CF center team recommended he be scheduled for a G-tube in about one month. In addition to all of this, I felt the nutritionist at the CF center would offer not suggestions about how to help Aidan gain weight, and brushed off many of my questions about the process. My husband and I scheduled for Aidan to be seen at another CF center a few hours away for a second opinion. The staff there felt he did not need a G-tube, and told us that according to their calculations, his weight-for-length ratio was 50%, which was right on target. They also said that looking over his growth chart from birth until now, they did not see any pattern that would cause them to recommend a G-tube. In addition, they noted that Aidan was doing well in other ways in terms of his health (no hospitalizations, no positive cultures, a bronch at 8 months that showed no secretions, clear chest X-rays, etc) and so they were really mystified as to why a G-tube was being talked about.....When we returned to his most recent clinic appt., his treatment team at our "home" CF center also found he was at 50% weight-for-length and stated he didn't need the surgery at this time. I guess I am wondering if his CF treatment team that was pushing the G-tube was recommending something unnecessary. From the reading I have done, it seems most children who get a G-tube have either been struggling with weight loss and/or have much lower BMIs or length-to-weight rations than Aidan. Is a G-tube really a good idea when a child has been steadily gaining weight and is in the low 40% weight-for-length? This experience makes me question a lot of my interactions with our CF Center Team. Have you heard of an infant in similar circumstances getting a G-tube? Comments? Advice? Resources I could consult about this?
My son, Aidan, now age 15 months, was diagnosed with CF via newborn screening. He struggled with weight gain a great deal during his first six months, usually hanging around weight-for-length percentile of about 15% or so. During the second half of his first year, his weight-for-length percentile climbed to around 25-30%. His CF center treatment team began commenting at around one year that they thought he needed a G-tube. Over the next couple of months, his weight-for-length percentile moved up to around 40%. The treatment team kept stating that he needed a G-tube, and that he would do very poorly in the future if he did not get one. At 14 months, his weight-for-length ratio was 42%, and his CF center team recommended he be scheduled for a G-tube in about one month. In addition to all of this, I felt the nutritionist at the CF center would offer not suggestions about how to help Aidan gain weight, and brushed off many of my questions about the process. My husband and I scheduled for Aidan to be seen at another CF center a few hours away for a second opinion. The staff there felt he did not need a G-tube, and told us that according to their calculations, his weight-for-length ratio was 50%, which was right on target. They also said that looking over his growth chart from birth until now, they did not see any pattern that would cause them to recommend a G-tube. In addition, they noted that Aidan was doing well in other ways in terms of his health (no hospitalizations, no positive cultures, a bronch at 8 months that showed no secretions, clear chest X-rays, etc) and so they were really mystified as to why a G-tube was being talked about.....When we returned to his most recent clinic appt., his treatment team at our "home" CF center also found he was at 50% weight-for-length and stated he didn't need the surgery at this time. I guess I am wondering if his CF treatment team that was pushing the G-tube was recommending something unnecessary. From the reading I have done, it seems most children who get a G-tube have either been struggling with weight loss and/or have much lower BMIs or length-to-weight rations than Aidan. Is a G-tube really a good idea when a child has been steadily gaining weight and is in the low 40% weight-for-length? This experience makes me question a lot of my interactions with our CF Center Team. Have you heard of an infant in similar circumstances getting a G-tube? Comments? Advice? Resources I could consult about this?