Replies to This Discussion

Permalink Reply by Nancy Hallock on August 23, 2011 at 2:34pm

We have gone to Camp Conrad Chinnock...he went by himself the summer before last but I wasn't able to send him this year. I'm going to make sure I put money aside for this for next summer. Thanks

Permalink Reply by Valerie on August 23, 2011 at 9:01am

have you told him all the consequences of poor control in graphic details? when my boys slip up, I remind them that I really, really would like to have grandchildren one day LOL

Permalink Reply by Jan on August 23, 2011 at 10:20am

I would seek counseling for him because he is understandably burned out; of course he is sick of diabetes. We have never had this problem; usually have to force her to eat but once insulin is given the insulin makes her hungry and she will then eat. I would not restrict food or lock the fridge because that could set him up with an eating disorder but there must be some system whereby you can be alerted when he goes for food (when you are home that is). Maybe a video set up that can be rigged up with some kind of alarm? Must be some kind of electronic warning gadget. I would tell him that he is not free to go into the kitchen and prepare his own food, that he must come to an adult who will prepare it for him and punish him if he does not agree to the rule. I would give him the food, within reason, when he does come to you so he is aware he does not have to sneak, just be accountable for it.

Permalink Reply by Nancy Hallock on August 23, 2011 at 2:36pm

My girlfriend also suggested an alarm for the refrigerator and cabinets....or maybe even an alarm that goes off if someone goes in the kitchen. This might just drive me batty though because I have two teenage girls as well. I decided not to lock up the cabinets because many of you are absolutely right....it will teach him nothing and might make matters worse. I was just feeling desperate because I've talked to him over and over and he still walks in the kitchen and acts like he doesn't have diabetes at all.

Permalink Reply by momwith3 on August 28, 2011 at 10:12am

I understand your problem and sympathize. I have two children with type 1 and have similiar issues with both and unfortunately I don't have a solution. My daughter was diagnosed at 7 and within a year was hiding food in her room and not bolusing for it. This has been a long haul and we still see her doing it at times and she is 12. We have told her we will count it into her meals and now she is on a pump but she hates to test. We have reduced this but there is no one correct answer. of course we were worried about this and I have talked to her many times as we are not super strict with what she eats. I was very worried about her developing food issues and had her going to a social worker at school, but she hated it and so I let her quit. My son was diagnosed at 10 almost a year exactly to the day before my daughter was diagnosed. He eats a lot. He is now 6'2" and so we really had a hard time trying to get him to test everytime he wanted to eat. We tried to add more snacks into his plan, but again they really have a hard time with this. I was at a loss for how to help so we just kept on him: TEST Test Test! We upped his carb allowance for each meal . We also did not want to restrict him too much, because my husband who was diagnosed at 10 missed at least one growth spurt because he was on such a strict regime.Cameron grew 6" one year, so his hormones were probably going crazy as well and he needed the food. Cameron, my son, hates to test also. So it worries me, but he spent the summer away working and proved he could manage his diabetes and tested frequently. But now that he is home he seems to be more lax again. I don't have the right answer, but be aware I think this is a common problem. They do get tired of the disease and the long talks may help for a while but know they will probably rebel again. We have tried reward and punishments and all work for a bit, but nothing for us was or is full proof. I hope this is not too disappointing to you, just know you may have to try many things to find what works and know many of us have dealt with this too. I think your best bet is too just ask him if he took insulin everytime you see him eating and be his reminder. Is he on the pump as this is easier to solve if he is as it only means push a few buttons and not another injection. Take care and I hope you the best.

Permalink Reply by Hockey Mom on August 30, 2011 at 7:50am

We recently changed Certified Diabetes Educators to a younger, cuter, tech savy, more cool person in the same office. I know that sounds so sexist and we resisted it for a while but my son's numbers got so bad we felt we had to try something else or the dr. was going to drop us fro his practice. Our first CDE was great and I really liked her but she was more Mom, Grandmother age and he resisted everything she recommended and hated our visits with her.

The new one is a few years out of college and is also on the Omnipod. He repeats her words of wisdom and she even has him drinking skim milk and taking his healthier lunch to school which he had previously resisted. His A1C numbers have really improved to the low 6s. The rapport is good but she is very good at downloading different sets of numbers and adjusting his pump. She is also very good at calling him out when he did not bolus or changed bolus recommendations. She has even asked him if he was drinking at a party because his numbers dropped so low.

Maybe your son needs a mentor, coach or younger, male CDE who he would care to impress with his maturity due to his diabetes. My son definately did not care whether the dr., me , his Dad or the first CDE were happy with his situation - he wasn't happy either so we could all just share in the misery. But he is now very concerned about the CDE's and his hockey coaches opinions of him. She has also spent a lot of time working with a CGM to show him his BG and insulin needs during games and practices which has improved his play. So important at this age.

Permalink Reply by Nancy Hallock on August 30, 2011 at 1:31pm

That is a great idea! I'm going to see if I can locate a CDE. Where do you find one? We have Kaiser insurance and they don't offer much in care for diabetes. He does need someone to look up to and respect. I have the same issue....I'm mom and that doesn't comfort him anymore. Today I went to his school because his pump was vibrating. He wouldn't even let me talk in the nurses office...kept saying "ssshhhh". He quickly hides his pump and is very concerned about people knowing. This is new....as he's been diagnosed over 7 years. I would appreciate your advice on where to find a CDE.

Permalink Reply by Hockey Mom on August 30, 2011 at 5:10pm

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.

Permalink Reply by Hockey Mom on August 30, 2011 at 5:32pm

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.

Permalink Reply by Jodil on September 2, 2011 at 5:48pm

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 :-)

Permalink Reply by Holly on September 20, 2011 at 8:00am

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.

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