Lynn & everyone,

I agree with Lynn and everyone of you!!!!!!!!!!!!!!!!!! Diabetics our so open and involved!!!!!!!!!!!! They get free blood monitors, syringes, needles etc......... They started the pump, etc.  They have so many fund raisers and events its amazing. NO ONE KNOWS ABOUT CAH!!!!!!!!!!!!!!!!!! No one has ever tried to do something about it. Everyone wants to keep it quiet. Your right we need standards, new types of ways to administer meds etc.  Patches, time released, pumps how ever we can get it. My grandson is only 7 yrs old with SWCAH. He tells me hey grandma did you remember my meds?????? He is so on it. He has been doing this since 2 wks old. We go in for labs and its like a normal routine. Doesn’t mind a bit. He even asked the Endo about everything shes doing. When he is very sick he will let me know & tell me he needs to go to hospital or needs a shot. He is very smart. He understands about it all. His teacher is a diabetic and wears a pump. Cody and his teacher have discussed this. He even knows how it works and if it needs refilled.  I believe the pump is a good thing!!!!!!!!!!!!!!!!!!! I will help in anyway I can. I will get info from my endo, research etc. I believe the patch is good. I think we need to all get together with our concerns and the way we think it should be and should not be and work together. We need to help raise money for the Cares Foundation to get these top Dr.’s to work on this or as Lynn has it her connections. I believe however or whatever it takes to make a change. Look at the newborn screening. That is wonderful. My grandson almost died because they had no idea what was wrong. Everyone got toghether to make this happen. Sorry I just want it to be so much easier for our children.

Jenny