Our Endo has three in his office. We see the CDE about every three months and the Endo about every four months. Since my son is more under control, we may not see them quite as often and may actually see a Physician’s Assistant every other Doctor’s Visit which will help with the waiting in the office time.
The CDE works off of his pump downloads and a CGM at times (we don’t have one yet. The actual bloodwork is done at the dr. appointments. Our insurance pays for both types of visits unless they are on the same day - we are blessed with a large company that has good insurance.
If your endo doesn’t have them, I’m not sure where you would find one. I’d start with your local Juvenille Diabetes Chapter.
I think that it is kind of natural for them to not want to be different in any way starting at this age. It is just hard because they obviously have to do things differently because they have diabetes and they want so badly to fit in.
My son’s CDE has convinced him recently that literally everyone has something that they don’t like about themselves at this age and even later. Some people have big feet or noses, some are shy, some have skin problems, some stutter, some can’t play sports because they are so awkward, and diabetes is just his thing.
He still keeps it a secret but after being a hermit his first year, last year he found a small group of friends that he shares this with. Some are in the Sports Medicine program at school and some have known him since elementarty school or are on his hockey team. He tests and eats in front of them and his lunch friends at school. He still thinks most people, especially girls, will be “grossed out” by the blood. He may be right. There is no need for the world to know his medical history but I do insist that coaches and teachers be advised just in case.
Hi Nancy, I am sorry your son is having such a hard time. I have been a Type 1 diabetic for 10 years and I am sick of it too so it’s understandable that your son has had enough. My son also developed Type 1 diabetes last year at 8 and sometimes he is hungry and only wants carbs. I can only tell you that after years of running my sugars high I developed gastroparesis in where my stomach no longer works and I have to eat an all liquid diet. If someone had told me about this I would have maybe taken better care of myself. That being said, most kids I am sure sometimes get fed up and frustrated since diabetes is 24/7. I cannot imagine living (basically) my whole life (like your son, my father -was 1 years old and is now 71 or my son) so give yourself and your son a break and just do your best. I would try to explain to him that there are serious side effects and you could tell him how I have to eat all my food from a blender and can no longer eat in restaurants, with my friends, etc… Maybe you can sit down and talked to him about “no carb” snacks and let him eat those freely such as cheese, cold cuts, carb free veggies, sugar free drinks, Good luck
I read something somewhere that a parent having the same problems as you was doing whatever they could about their child. They would tell them 100 times a day about the problems they could face and what could happen if they don’t take care of themselves. The story was actually from the child (who was now an adult) and their response was to withdraw and he said that he thought well all of these bad things are going to happen why even try. He ended up at a function and spoke with a man who was in his 80’s who had diabetes since he was very young and had a family and had done sports all his life and was in great health. The child said he finally realized that if he took care of himself he could actually have all of those things with diabetes too. He did say that every once in a while his parents would have to take over simply because he needed a break but he was able to do everything that he wanted to. Maybe like someone else said he just needs a younger adult to help him see. If you can’t find a CDE ask your endo. Tell them what you would like to do and ask them if there is a family in their practice that they could possibly ask if they would be willing to contact you and help out. This way your insurance wouldn’t even be an issue. Just a thought.
