Hello my name is Linda. I’m from Massachusetts. In October my daughter was diagnosed with T1D. She is only 5 years old. We have been at this for 2 months now and it is still hard. My daughter tells me all the time Mommy I hate this i wish I never had diabetes. She tells me all the time i wish you had it. Everyone says it gets easier but when she says things like that how can you have hope? She is so little and has to grow fast. what advise dose anyone have to help my daughter. I know she does not understand whats going on yet but hoping for any input to help her the best that I can.
@Gcrepeau2012 hi Linda, my heart goes out to you. yes she’s too young to understand but I am 52 and I still don’t always understand either. I won’t tell you it gets easier. as you become expert in developing your “sugar” senses, this will definitely get more routine.
please check out the resources tab at the top of the page, there are tools and online resources, bag of hope, and fundraisers where you can meet other parents with the same struggles as you.
I hope you have access to a CDE and medical help as well. this first year will seem like it’s never going to end but with the right folks on your team it can help.
Her words may break your heart now but I believe she’s testing you (they’re brilliant at 5 aren’t they?) to see if you are going to break. She needs an emotional rock right now. this is scary for both of you.
there are a lot of us here that have had diabetes a long time, have had kids, have made the “manual transmission” pancreas work for them. the new equipment including the feedback pump with CGM may be of great benefit to your daughter in the near future - but I can assure you it is a million times better than what it was like in the 1970’s. please reach out for help when you need it and know we are all rooting for you and your daughter.
I was diagnosed in 1945. when I was 6. Very little was known about diabetes back then. I managed to avoid serious complications, and now I have been type 1 for 72 years. It certainly takes a lot of time to adjust to diabetes when you are newly diagnosed, but things are so much better now, and there are better insulins and meters to measure your blood sugar at home. Insulin pumps and CGM’s are wonderful. In the 21’st century a newly diagnosed type 1 person has an excellent chance of living a long and healthy life, without any serious complications. The life expectancy of a newly diagnosed type 1 is almost as good as it is for non diabetics.
My daughter was diagnosed three years ago, aged 11. I didn’t really believe people when they said it would get easier - I was just in coping mode for the first six months. But it really did get slightly better after the first year. Or at least more manageable. It is good that she talks to you about diabetes, even if it is hard for you to hear. Best wishes to both of you.
It’s very hard. Unfourtently even my daughter has problems after 4 years. She sometimes breaks down and tells me how much she hates life and she wishes she never had it. It’s hard being the parent because you can’t cure it for them. I try to find others who have T1D and have them talk to her so she understands that it sucks, but you can still have a normal life. Maybe you can have family friends tell her how they are so proud of her and how she’s a Big girl. Also see if there is a local JDRF that may do meetings where she can meet others and learn she isn’t the only one.
I am a grandfather of a 10-year-old who was diagnosed when he was 7. It has been hard, but he marches on. He has had several things that has hit him in the past few years, including loosing his father shortly before he was diagnosed, a grandmother and a great-grandmother with whom he was very close. He is now wearing a CGM and a pump to manage his sugar, but it is still challenging to accurately identify the carbs for each meal. He is a sweet, happy child, and has been open about his situation. The kids at his school have been very supportive. He was talking with another child who had hemophilia and who was struggling with it, very reluctant to talk about it. When he heard my grandson talk openly, this child began talking about his situation, much to the relief of his mother. I’m sure it is more difficult for teenagers. That is a tough time for everyone trying to find themselves and also fit in.
Hi Jimmy @papajimmy,
It sounds as if both you and your grandson have positive attitudes about living with diabetes - it is so wonderful to see. Managing his glucose level will probably get easier for him as he gets older and is able to recognize patterns in his BGL and associate the many CGM readings with his activities, food and pump settings. Keep in mind that his body, like every one else, is changing constantly so settings on his pump will possibly need to be changing, especially as you and he identify what his body is doing.
I’m still thrown a curve ball when carb counting - especially when eating out or when my wife serves one of her extraordinary concoctions [even when she tells me the ingredients]. And I began “carb counting” for MDI in the early 1970’s.
It is suspected that the onset of T1D is triggered by a virus or trauma - physical or emotional. The events in his life prior to his diagnosis may have forced onset. Learn what you can and continue visiting here and be there for him when he has questions and needs a “rock”.
Thank you so much for your response and thoughts. I agree with you
about changing through time. We see huge changes other than when he is
sick or very active. His body creates different scenarios. I am a
retired engineer, and have a hard time not being able to pin down his
sensitivity factors for insulin and carbs. I generated a method using
bi-variate linear regression in Microsoft Excel spreadsheet to assist in
tracking these parameters that I would be happy to share with you. It
is easy, but requires good data logging. Let me know, and I will send
you a little report that I generated that explains everything. But,
it’s still not easy because of the changes.
Jimmy, I know exactly what you are saying. Just when I think I’ve gotten it nailed, something will change everything. Many an evening I’ve said to my wife during dinner that I think I got everything set perfectly and she will reply “yes, but just wait another couple of days and you’ll find you need changes”; we’ve been married over 50 years and she has seen it all before. Bottom line - stay flexible and don’t over react.
For instance just this week, a cold snap hit and all my settings weren’t working - I’ve been running 125% temporary basal to compensate. For years I [snow] skied at least two days a week and the cold didn’t affect me but in the recent 18 years living in Florida a 10 degree drop tenses my body and slows down insulin absorption.
I know this is a bit off topic, but I have always wondered about T1 being triggered by physical and/or emotional trauma (as you described.) Kate’s endo asked her about the time before diagnosis, wanting to know if she had broken any bones or if we had moved house etc, to look for causes. Do you know why there is that link and can you point me to any studies I can read up on? Thanks and regards
Hi Wendy @francesjean
This is a subject I first heard in a lecture at Joslin about 50 years ago - actually it was the first time I had any inkling that TypeOne is most likely triggered by a virus. I’ve read a few papers over the years that have either stated or implied that physical trauma could also be the trigger.
Unfortunately right now I don’t have links to formal studies; a few years ago members of the Joslin Medalist Group [PWD for 50 years or longer] conducted an informal, non-scientific poll among ourselves and noticed the consistency of the association between trauma and onset. Personally, about a year before my diagnosis I had a head injury, probably concussed, that required stitches while horsing around with the guys - you know teen boys. There were many tales of trauma of different types, notable from children diagnosed who were in areas being bombed [1940’s] almost every night.
I’ll look around and see what I can find for you.
Thanks very much Dennis - I really want to understand this better.
Would you be interested in the Report?
I am being nosey lol but I’d like the report! I have been looking for different things to try when it comes to logging for my son, he is 10 and was diagnosed May of this year.
I would be happy to send it to you. Please send me your email address. After you read the report, I would be happy to assist with any questions.
I should have tried this first. Please see attached.
Could you swnd me the report I would love to see what you do for logging. What ever resorces i can get I would love
Please see attached Report. If you decide to try this approach, I would
be happy to set up the spreadsheet for you. Just send me data
Time of Day (I find the ratios/parameters change with time of day;
i.e., morning, midday, evening, late night/early morning)
Blood Glucose Reading at time of Dose (mg/dL)
Carbohydrate intake at dose (g)
Blood Glucose Reading 3 hours after Dose, or 4 hours after Dose if
insulin is still active (mg/dL)
You can then add/delete data as changes occur over time.
Hi Linda. I’m in Rhode Island. I was diagnosed with type 1 diabetes back in 1986, when I was 7 years old. I’ve gone through lots of emotional ups and downs with this disease, but even though it can be a tough road at times, life is still amazing.
I’ve been using an insulin pump since 2004 and that’s been easier than injections, for me. I also use a Dexcom CGM to help keep track of my numbers. Technology has come a long way, which gives me hope. I also find a lot of inspiration and community in organizations like JDRF and also through online communities (like blogs, Twitter, Facebook connections, etc). There’s someone online, at all times, to listen. Knowing I’m not alone with diabetes helps it feel less overwhelming.
All my best to you and your daughter. I hope you guys are doing okay!
I’ve had t1d for over 12 years. Check out the for families tab at JumoHealth.com. The content to help kids (and parents) make sense of it all is incredible. All the best!