tag:blogger.com,1999:blog-7157112514969734133.post799485780972362545..comments2023-06-27T03:22:12.461-07:00Comments on Allie's Abnormal Appetite: Doing AmazingJodihttp://www.blogger.com/profile/08333868934527759664noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-7157112514969734133.post-64746742954426156332013-06-21T06:55:02.944-07:002013-06-21T06:55:02.944-07:00How are things going? I just found your blog and ...How are things going? I just found your blog and find it inspiring. Our son has hypotonia and cannot eat high enough volumes to support his required calorie intake. He was diagnosed as failure to thrive at 3 months and received a g-tube at 6 months. Shame on the doctors for giving us the runaround for this 3 month period while they tried to figure out what was wrong. It was a disgrace. Our son was wasting away in front of us. We eventually changed hospitals and they found out he was aspirating withing 24 hours. <br /><br />He's now 13 months old and has the MIC-KEY. We still do not have a diagnosis. All metabolic & genetic testing has come negative. The doctors suspect his problem is neurological in nature, but the MRI, spinal tap etc, revealed nothing. We are left in the dark.<br /><br />Our son continues to make progress with his milestones and is only slightly delayed. But he wont eat more than a few pieces of food at any given time. Our first weaning failed and we are now still 100% tube feeding.<br /><br />Even with our feeding therapist, there is little to no support structure for parents with kids that have feeding tubes. Keep up the good work on the blog and thank you. It helps us realize we're not alone.Anonymousnoreply@blogger.com