Hypoglycemia/Hyperinsulinimia

[musyaka]

Hi, everybody!

My first and only son was born with hypoglycemia/hyperinsulinimia and is currently 6 mo. of age. He's been on diazoxide all this time, and it seems to work for him. We still have to monitor his blood sugar, but it has been pretty stable. I am looking for a family that is experiencing the same or similar situation, mainly for reciprical support. My husband and I went through some really tough times with our  baby, and the battle is not over yet. He also has some developmental delays.
Please, respond! We have never come across any children with the same problem.

Thank you

[JDRF-Team-wak]

I am not a physician, but the mom of a type one and the daughter of a type 2 diabetic.  I unfortunately do not have any experience with this, but I was able to find some websites for you.  You might also want to ask your doctor or hospital if they can put you in tough with others in your situation,  Unfortunately do to the new HIPPA  privacy laws, some  doctors are reluctant to do  this as they need to speak to all parties and get permission to give out names and numbers.  If you live near a major medical center they might be of some help.


http://www.joslin.org/1083_2022.asp

Sorry that I could not be of more help.

[mom_of_4]

Hi musyaka,

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)