Nichole,
My 2 1/2 year old son was diagnosed two months ago. It is an extremely difficult time for you right now, however, it will get better. These words may not be reassuring to you now, I know whenever I heard this, I was very skeptical, but going through it myself, I can assure you it really will get better. I found that writing about what I was going through helped me a lot. That is one reason I joined this site. Even if no one reads what you have written, it still will help to get some emotions off of your chest. I also found that researching T1 diabetes helped a lot. Before my son was diagnosed, I knew a few people who had T1 Diabetes, but I really didn’t have a great knowledge of it. The internet is a great resource to find out what T1 diabetes really means and more about treatment options. You also might want to go to the JDRF website and find out if your local chapter offers any type of support group. Where I live, our chapter has a meeting once every other month and it is fun for the kids (of all ages) as they do crafts and play games and even have snacks. Meanwhile the parents get together in another room to discuss how things are going and sometimes listen to guest speakers talk about their experiences with diabetes. (www.jdrf.org) Also the jdrf offers a “bag of hope” for kids who have recently been diagnosed. It has a lot of information in it about diabetes that might be helpful to you. It is also great to use to carry your supplies in as it is backpack style and even has an isulated pocket in case you had a need to carry unused insulin in it. The ADA also has a “Everyday Wisdom Kit”. I think you can specify age range of the child getting this. It was also very helpful to me it had things such as a dvd, calorie king book, game etc. about diabetes. You can get ADA’s Everyday Wisdom Kit at http://www.diabetes.org/living-with-diabetes/parents-and-kids/everyday-wisdom-kit.html, or by calling 1-800-DIABETES
(1-800-342-2383); the JDRF “Bag of Hope” backpack, you can get here: http://www.jdrf.org/index.cfm?page_id=110888. Hope this helps! I know it is overwhelming right now. If you need anything feel free to send me an e-mail on tu-diabetes and I will do my best to help.
My 17-yr old son was diagnosed with T1 almost a year ago. My advice is like some of the others… let him be a kid and don’t worry about what your family and friends think. As much as I try to educate my family, I have come to the realization that they will forever look at this like he has type 2. sigh
Also, be sensitive to his privacy around others. My son is still very self-conscious about testing his BG and giving himself insulin in public – or letting me give him a shot. When we go to a restaurant he will usually test his BG in the car before we go inside. When the food arrives he usually goes to the restroom to take his insulin shot.
Good luck!
It was always be a learning experience…at least for a few months. It does get easier but don’t let your guard down thinking you know all about how to handle it. I have had many times where I thought we did the right thing for our 11 yr old son (T-1) and it didn’t go the way I expected. Blood sugars can be very hard to predict sometimes…I hope you and your son can work together as a team until he’s ready to take care of himself completely on his own. It’s important to have support from others. I have a heart for newly diagnosed diabetics because our experience was so scary…John had DKA and was nearly in a coma.
IT is great that you have found this forum. There are also forums for teens through American Diabeteis Association. If you ask your diabetes team if there is someone your son’t age who is doing well managing his diabetes that he could connect with that might be helpful to him. You are right in that it is overwhelming for parents and the teen. I believe that you need to accept that it will be a lifelong learning process for your son and your teen. My son has had diabetes for almost 4 years and I am learning new things about how to manage it every day. I believe that our job as parents is to help make sure that our kids with diabetes are able to independently manage it by the time they grow up and to support them in living a healthy lifestyle so that they can fulfill their dreams. Try to get him on the insulin pump as soon as possible as it gives him flexibiltiy in when and what he eats. You will need to monitor things ore closeley but as much as possible do it as a team with him not a nag. Involve other family in this because they need to understand that you can’t do it all. Good luck,
Nichole,
Hope things are going well with your son. I just got my “back to school packet” for our high school and wondered if you had any questions about school since your son was diagnosed so late in the school year.
Some of the things that we do are required and some are just nice. Our school requires a Glucagon Pen that is kept by the nurse’s door in an bag in case one of the teachers call with an emergency. 911 is called but since it will take them a few minutes to get to the school and find the room ,our nurses will go to the room and administer usgar or glucagon for extreme lows. It also requires that every teacher on my son’s schedule be notified by them that my son is diabetic and the actions to be taken. My son also has a pass to leave class early before lunch to test his BG and will not be penalized for leaving for any medical need. He has access to juice in the nurse’s office and has a place to store his extra supplies. He is allowed to test BG anywhere on campus that he feels comfortable but can test or change his pump in the nurse’s office if he wants.
We experimented with taking a lunch late in the last school year because after lunch numbers were his worst of the day. He finally admitted (after extreme interrogation by a CDE, lab assistant and nurse) that he was bolusing at the end of the lunch period so his friends wouldn’t see him testing. Leaving class early to test and an accurate/consistent carb count for lunch had corrected that by the end of last year.
We do not have a formal plan for assigments in class. His biggest problem is making up work after spending 22 days out of class the first year for illness and dr. appointments with specialists which take a large part of the day. Last year was better with no illness days but still many dr. appointments. We go to the dr. every 3 months and CDE in between those appointments. Now that growth and hormones are more stable, I hope we can go to a longer schedule.
We did go through the lengthy process (5 months - start early! ) to get an medical accomodation for SAT testing. It has to be the same as he has in class - extra time equal to the time he is out of the classroom for medical need. It is very hard to get extended time on the SAT because any student would do so much better with unlimited time.
Good luck on the new school year.