This patient support community is for questions related to juvenile diabetes including
Celiac disease,
depression, diabetic complications, hyperglycemia /
diabetic keto-acidosis,
hypoglycemia, islet cell transplantation,
nutrition, parenting a diabetic child, pregnancy, pump therapy, school issues, and teens with
diabetes.
Unfortunately, I dont know very much about these disorders myself... I am just another mom whose still in the very early learning stages of type 1 diabetes. After a load of tests were done on my daughter the past month or so, it would appear she may be in the early stages of T1. I can certainly relate to your desire of needing to reach out and be near others who share what you are feeling right now. I have come to medhelp for the very same reasons and I must say, the warmth I have felt here is simply amazing! Your post touched me deeply and even if my link below is not very helpful to you, I just wanted to reach out and send empathetic hugs to you and your precious baby!
I am not sure how much help this will be to you, if any, but I felt I had to try. My daughter is under the care of doctors at the Childrens Hospital of Philadelphia. From what I understand, after having had these tests run on my daughter... CHOP has outstanding resources in the area of hyperinsulinism and specializes in that area of research. Please forgive me if your babys condition is different, I lack the understanding with all the different disorders.
I thought maybe, at the very least, these links might help lead you to people who can further lead you... Below is a page off CHOP's website where they offer Networking to link families by way of forums, discussion groups etc. Maybe one of the forums could even lead you further.
http://www.chop.edu/consumer/jsp/division/service.jsp?id=47690
(Hyperinsulinism Homepage)
http://www.chop.edu/consumer/jsp/division/generic.jsp
(You will find many other resource links on this page)