My very active 17 yo daughter was diagnosed Type 1 in February. She has been a real champ and I consider myself incredibly lucky that she is managing her care as well as she is. She has been experiencing a “robust honeymoon period” which is resulting in frequent lows. She is currently taking just one unit of lantis and using a carb to insulin ratio of 40 to 1. There are days when she doesn’t take any insulin other than the lantis. Couple this with her going off to college in August, and I am a nervous wreck. Has anyone else experienced this extreme honeymoon period? I am terrified that her honeymoon period will end during her first semester freshman year, while she is away at school (1 1/2 hours away).
Secondly, she is starting to have days when she gets angry and is questioning how/ why this happened to her- especially at her age.
Does anyone have any words of wisdom/ comfort for this worried mom?
Hi @mrsflagg3. Congratulations that your daughter is doing so well managing her care. I am envious of her carb ratio - which I imagine is due to her body making its own insulin, along with her hard work.
I have seen on the forum postings from people who went to college shortly after diagnosis, or were diagnosed after starting. It’s a scary thought that your child won’t be with you should something happen, but we do need to learn to love with diabetes wherever “our world” may be, be it the sweet comfort of home, school, or work.
I would suggest you look into getting a continuous glucose monitor, or CGM. Some transmit data to your cell phone and can be shared with a parent, or the person of your choice. As I understand it (I don’t use the share option myself) it’s a matter of pairing the transmitter with the device the other person uses, so both your daughter and the other person can see what’s going on. For children through high school age I think the school nurse may be on the receiving end, but IMHO this would not be appropriate for a person branching out into independence with college. Please keep in mind many of us on the forum went to college with diabetes and without technology (get this - BG meters did not exist in our college days!!) and we managed.
I let new roommates know about my diabetes, and what an “insulin reaction” - what we now refer to more often as “low blood sugar” looked like in me, and what to do. I also said I was willing to share my belongings, but not to touch my food and juices as needed them for snacks and blood sugar.
I hear that many colleges have groups/support groups for students with diabetes, so she might check into them if she wants or needs friendship and support from others who are walking the same walk. You/she might look into putting a 504 plan into place which would allow her to keep food in her room or of medical necessity of its not otherwise permitted, and handle other needs. She should also let the school nurse know. Glucagon kids have been around for ages, for those hopefully rate instances when we are not able to take in carbs on our own. They can be intimidating for some but there is now a nasal spray that does the she thing and is easy for anyone to use.
I’m sure my parents were nervous about me leaving for college but lots of us made it through.
Many of not most people get angry at and about diabetes. Type 1 is an autoimmune disease, meaning the body turns on itself for reasons we don’t understand. It’s maddening and unfair and the question is understandable. I don’t have an answer but can only encourage her that she can enjoy a good long life with diabetes, especially with the technology we have now. And yes, it is a lifelong commitment. But people make long term commitments - some lifelong - to a career; to marriage; and to their health, whether a medical condition is involved or not. You can look online and find famous people with Type 1 - musicians, actors, professional and Olympic athletes, and a Supreme Court Justice.
Like anything new, thus phase of diabetes is a huge pain. It may continue to be one but to a lesser degree as managing it becomes more natural over time. Like driving a car, where you have to consciously think through every step in the beginning but gain “muscle memory,” with time things will come more naturally.
@mrsflagg3 Hi Janet and welcome to the JDRF TypeOneNation Forum! I hope that you find good support on this Forum.
Personally, I do not remember any “honeymoon period” after I was diagnosed but, retrospectively, knowing what I was feeling, and symptoms that weren’t recognized, I suspect that my diabetes onset was six months before my diagnosis. I went through periods where I was constantly thirsty, always hungry and eating, and urinating almost constantly - and then I’d go through month-long times when I felt great and lived happily. What I do have in common with your daughter is age - I was diagnosed on my 16th birthday in 1957 and will get to celebrate mu successful life living with diabetes
What I’m really concerned about is how she can actually have autoimmune diabetes and maintain “normal” body glucose levels with so little help from insulin. Four months is a long time, and probably very soon her bubble will burst - worst case scenario for her is if that happens just as she is on her move for school. I’m not a medical doctor so I can’t tell her what to do, so I will urge that she discuss with her doctor and put together a Plan A, and a Plan B.
Keep in mind, that your daughter is an adult, or very soon will be, and it is she that will become her own “primary care physician” [for living with diabetes] for the rest of her life. It may be good timing that her insulin needs will be changing just as she is getting accustomed to living on her own. Yes, as a mother, like me as a father, want to be there to help, be a listener and offer support, but managing her, diabetes is something she needs to be able to do on her own. My personal survival strategy. It will help her if she has someone with whom she can “talk diabetes”; her college my have a diabetes support group, and there probably is someone in the medical clinic who knows diabetes. For me, it was 20 years before I met another person with our type diabetes.
As for the “why me”. From time-to-time, I go through that stage - been there so many times that I cant count - thankfully that bit has stopped hitting me in the last decade or two. What you can do, is find a way to tell her that the diabetes came to her NOT for anything that she did, or that she didn’t do. It was just her luck that she was chosen. Also, after I look back many years and decades, I believe that my “luck” at being “chosen” for autoimmune diabetes was Good Luck. Diabetes has caused me to acept diabetes, and overcome; a basis for my lifetime of success.
Janet, I’m sorry to hear about your daughter’s diagnosis. One resource that I’ve found helpful even after many years with diabetes, is JDRF.org. They have articles and connections to individuals and groups who can help newly diagnosed individuals. The link here, https://collegediabetesnetwork.org/content/college-materials-and-events#resources is from their website and is for college students. It is just one of many resources available.
To echo Dennis and Dorie, many of us feel anger about this disease from time to time. Many other times, we do just fine. But it’s hard for a parent to watch, and I’ve often thanked my mom for her courage and patience and love. I trust that you and your daughter will do well.
I’m 17 and I was just diagnosed with T1D in August. I get really sad, confused, and upset sometimes because I was literally the healthiest and most active person ever. I never thought I would ever have any kind of health problems. I always watched what I ate and I played soccer along with running cross country and track. My doctors have always praised me for how great I was doing. I can understand and relate to how your daughter feels, and I’ve been staying at home since I graduated a year early. I’m nervous for college too. I hope things get better!
Thanks so much for sharing you story with me. My daughter also played soccer, ran XC and track- you two have so much in common!
She has been living on campus for almost a month, and while we have had some challenges, having Dexcom as a tool has been amazing.
Her struggles have been with the food offerings (pasta, pasta, and more pasta) as well as the typical experimenting with adult beverages. Overall, she has had a positive experience and hope you are able to do the same next semester.