My daughter who is 15 was diagnosed with T1D in January of this year and the honeymoon phase seems to be over and now it seems like a struggle to get her numbers under control. I cannot say i understand since it was not me that was diagnosed. As a parent I feel helpless that i cannot help her. She continues to be active in school and sports but her attitude and joyful self seems to have taken a hit. I do not want to keep harping on taking shots and watch what you eat since she lives this everyday. Any advise would be greatly appreciated. Thanks!
@bunbun01 Welcome Eric to the TypeOneNation JDRF Forum! I trust that you will find community here among people trying to live well when affected by T1D and members here will freely offer you tips to make the diabetes life more more understandable for you, especially your daughter, and your entire family.
Effective diabetes management, whether in a “honeymoon phase” or not, remains the same - a balance, often a very delicate balance, between food, activity and insulin. That means that management of diabetes for your daughter is and will be a 24/L event - L=Lifetime. It really is great to hear that your daughter has remained active in school and sports and that she will always be that way; there really isn’t anything a person with diabetes [PWD] can not do or achieve. Staying busy and involved fully in life will help her maintain a positive attitude and life will be better as she feels better about herself and her accomplishments. As time goes on, diabetes will become an automatic “background” thing for her - liken this to when you watched her take her first steps, all her concentration was on not falling and taking the next step. Now you watch her race down the field, swim across the pond and smile - you will always have some worry but that worry will lessen as you see her conquer this diabetes thing.
I am NOT a medical doctor so my suggestions and tips come from my experience living actively with diabetes now into my seventh decade. I suggest that you learn ALL that you can so that you can offer her helpful hints when she asks [directly or indirectly] for your advice or assistance. Be observant! Know how different foods affect her BGL [Body Glucose Level] and the affect caused by exercise. Exercise can be difficult so we’ll talk about that later, or you can use the search button at top right to read some extensive postings on that subject.
Most importantly, don’t hesitate to ask questions. Diabetes affects each of us differently - what works for me may not work for your daughter.
I felt alone growing up with diabetes. My siblings did not have it and only my friends knew I had it but they still could not relate to struggles. I felt different and on the outside, spent more time trying to “fit in” with everyone around me. My parents were good supporters but never spoke to me about how I was dealing with a chronic disease or how they themselves felt lost because they did not know what to do or say to help me. I suggest start a conversation with her and sharing how you feeling/dealing with this major change in her life. Let her know it hurts you to see her living with the daily challenges, want to help her but do not know how or what you can help her with. She have some thoughts to share with you. Remind her that all of have a “normal” life and each differs in many ways. One last thought, my friends who knew I was a diabetic, have helped others, strangers or family, because the recognized the signs of a low glucose. Let her know she can bring more awareness and teach others about diabetes. You and your daughter will have your own up and downs living with diabetes. Best wishes to you both.
From my son (13yo, 2y T1D):
Adjusting to this new life will take time. Conversations that help her share her feelings (making sure you listen without trying to fix her), and understanding how different she feels physically when she’s managing well vs not so well, will help her. All the things that you’re trying to get through to her about managing her diabetes, they’re getting through, but it will take time for her to realize how they impact her, for her to make them part of her daily life in a seamless way.
From me (the nurse/dad):
The teenage years are about self-identity, strengthening friendships, and moving towards independence. By this age, kids pretty well know the right thing from the wrong thing, but making the right choice can be difficult.
Girls tend to be more thoughtful and emotionally self-aware. This is going to help. They’re also under a significantly greater amount of psychosocial pressure, which makes having to manage life harder, and probably complicate things for your daughter.
Keep up the conversation and the encouragement, let her know every day that you love her, will always support her in dealing with this, and listen, ask questions to help you understand what she’s going through and what she needs from you.
I am not a parent, but there is a great podcast I think you will find really useful and supportive too. It is called Juicebox Podcast. It is presented by a father who has a teenage daughter with type one diabetes. In each podcast there are different speakers that he interviews and many parents like himself. Absolutely recommend it.
@bunbun01, I hope your daughter will get to know some other teens who are type 1. Having type 1 friends who are type 1 can make a really big difference. There are summer camps for type 1 teens, or adults, that are well organized, and very helpful.
I was diagnosed in 1945 when I was 6 years old. I did not know another person who had diabetes. That made it very difficult for me. I started joining online type 1 groups in 2006. That was my first contact with other type 1 people. It has made a big difference in my life. I have met many of my friends at type 1 conferences, and local meetings.
I have been type 1 for 73 years, and I do not have any serious diabetes related complications. It can be the same for your daughter. Living long, healthy and happy lives with type 1 diabetes is very likely in the 21’st century.
Welcome to TypeOneNation! I’m so glad you’ve found this website. I’m Abby; I’m 17 years old and I’ve had T1D since I was 7.
You probably already know this, but I’ll say it anyway: being a teenager with T1D is super hard. That said, it does get easier, even if it doesn’t feel like it will. Here’s a few tips that I’ve learned from my decade with T1D.
First of all: If your goal is perfection, things will be very difficult for you. Make sure your daughter knows that it’s okay, and ultimately inevitable, to make mistakes. The important thing is to learn from them and move on. I recommend keeping a log of some sort–when I was first diagnosed, my parents wrong down all my blood sugar numbers and insulin doses; that’s probably overkill and I’m not suggesting that but it does help to keep track of overall trends so it’s easier to adjust insulin doses if needed.
You didn’t mention what technology/devices your daughter is using to manage her T1D–I used a manual glucometer for the first 8 years after my diagnosis, and when I switched to a Dexcom CGM, it completely changed the way I manage my condition. Make sure your daughter is aware of the many CGMs and pumps on the market, and help her choose the tech that best suits her needs. It makes a huge difference!
One last thing–encourage your daughter to find friends with T1D. Of course non-PWD friends are super awesome, but it does make a difference to be able to talk to people who know firsthand what it’s like to live with this condition, especially if she can find people her own age. I don’t know anyone with T1D in my community, so I’ve created several group chats (email, text, and Snapchat) for T1 Teens to chat about our common struggles! I’d love to chat with your daughter if she’s open to it.
Wow, that was a long message! Hope that helped a little–please feel free to pm me, and post on here if you have any questions. Best of luck!
I got got at the same age , well I’m 53 now with not one complication, she should look into a insulin pump and a cgm, dexcom 6 with a tandem pump , get educated!! The key is knowledge and self control, DISCIPLINE !! IT UP TO HER IF SHE WANTS TO CONTROL HER DIABETES !! NOT A doctor or nurse or endocrinologist, she has to do it !! , I’ve had a great life , diabetes never stopped me from anything
Hi. My dd just turned 11 in July. She was dx 03/09/18. So we are about a year and half in. The numbers are going to be a constant struggle. From our experiences and from what I understand from our Endo and other T1 Moms… for my dd she just started her period, that effects numbers, if she gets stressed out about school or anything, that effects the numbers… honestly all you can do, is eat as best as possible (we don’t hound our daughter and she is really pretty good with her choices) but we count every carb and dose accordingly. She just started a CGM, she was very against any technology in the beginning… I am hoping within the next year she will be willing to do a pump. Try to not be so sensitive to the numbers, I watch my daughters emotions get controlled by what the cgm says and I hate it. I try to tell her as long as she knows she is counting her carbs and dosing for them, her numbers are what they are. All I can say, is that your feelings are valid, you are not alone, I would give anything to take this disease away from my child. I don’t know if you are on Facebook, but I am in a group called T1D Moms, it is a great resource for us moms.